The A-Word

Mornings are Hell

2012-02-01T21:46:00.000-05:00

The crazy thing is is that I am a morning person. I have an internal clock that never lets me sleep in and I generally wake up full of energy and ready to go. Especially since Brian has been back on a normal sleeping routine for about two weeks now (KNOCK ON WOOD).

Yet, mornings are hell. I effin' hate them.

It doesn't matter how early I get up, how prepared I am before I even wake the boys, we are always rushing last minute.

No matter how much planning goes into getting out the door, the morning will entail one or more of the following:

The realization that there was homework to be done, that didn't get done
I look and realize Corbin has put on his clothes for the day OVER his pajamas and he is completely oblivious to the fact
Corbin's ski pants just got up and walked away some time during the middle of the night
Brian has decided his pants, underwear, and/or socks are just not going to satisfy his sensory needs for the day so he must change
Corbin has a meltdown because he realizes he doesn't have any more gum and he's going to be an anxious mess if he doesn't get that oral stim during his school day
Just as we're going out the door one of them sneezes and gets boogers all over my clothes so I have to change
A huge tantrum because someone can't watch Mr. Popper say "Stay focused!" over and over and over again
Always cleaning up some sort of spill from the morning- usually juice since Brian likes to go in and drink straight out of the bottle
Reminding Corbin twenty times that he can't play legos until he is fully ready for school
A long talk with Brian about why he must put up the toilet seat when he pees

You May Be Obsessive-Compulsive If...

2012-01-30T09:04:00.000-05:00

My little man woke up this morning completely unable to bear weight on his leg or to bend it at the hip. It's like a remake of 2009 when he had transient synovitis. Which is why I'm trying not to freak out too much as we wait around for his appointment to see the doctor.

In the meantime, we'll kill time by watching train videos on youtube. And laugh at the absurdities that autism brings into our lives, even when you find yourself immobile.

For instance after resting in my bed this morning he decided he wanted to watch a movie downstairs. I struggled to pick him out of the bed as he can't bend his right leg without crying out in pain. So I'm carrying him under his armpits with his body just dangling down. His toes are almost touching the floor. I'm already panting and huffing and I haven't even got out of my bedroom.

Then his arm shoots out and grabs the wall and he won't let me progress any further towards the stairs. I look at his face, grimaced in pain, and ask him what is wrong. He points to the bathroom and shouts, "LIGHTS!". I had to backtrack so he could shut the light off in the bathroom and close the bathroom door.

I again try to go towards the stairs and he again starts crying, not just from pain but from agitation. I do the guessing game and realize we have to go turn off his humidifier and plasma ball in his room before he'll allow the descent.

Finally everything is in it's place and I carry him down the stairs.

He asks for Peter Pan and I prop him up all comfortable on the couch and put in his movie.

I go off to start getting things ready so I could get Corbin off to school when I heard crying in the livingroom.

Brian had tried to hobble to the television because he just NEEDS to watch the same scene over and over again. He didn't make it far and was crumpled up on the floor next to the couch.

I scooped him up and carried him back to the couch.

Repeat several times, until he figured out he could still efficiently army crawl. And until I figured out it made way more sense to just put the beanbag and a few blankets right next to the television so he could happily rewind the parts he needed to watch over and over again.

And that folks is when you know that you are obsessive-compulsive. When no amount of physical pain is more painful than not being able to stick to your routines.

Here's to the hope that this is what it was last time and it heals up as quickly as it did last time. Because carrying around a child his size to placate his every obsession is going to be a challenge.

It Could Be YOUR Child: #TeamAmelia

2012-01-16T12:24:00.000-05:00

A few years ago I read a really great book, Second Glance, by Jodi Picoult. I found it riveting, suspenseful, and I couldn’t put it down.

After I read it, I realized that part of the story was based around actual events and it made me sick to my stomach. An integral part of the story was the inclusion of the Vermont Eugenics Project in the 1920s and 30s. In 1931 Vermont passed a sterilization law. It was titled that it was voluntary but there are doubts how voluntary it really was. Evidence shows that sterilization could occur simply if two doctors signed off on it. Thirty-three states enacted a sterilization law. During the war crimes trials after WW2, Nazi scientists cited AMERICAN eugenics programs as their foundation for their plans of “racial hygiene”.

If you’re still following along let me make it clear on who was “voluntarily” sterilized: “degenerate” families who were a drain on the economy, people who were in the poorhouses, mental institutions, or prisons. People who were of different races were largely targeted- Abenaki Indians and French Canadians.

Where am I going with this?

Recently, a story of a little girl, Amelia Rivera, with Wolf-Hirschhorn Syndrome, was told she could not receive a life-saving kidney transplant because she was “mentally retarded” and had “brain damage”. On top of that, her family isn’t even asking to take an organ from a waiting list (though even if they were I still find this completely appalling). They have a ton of family members all waiting and willing to donate a kidney. Without this transplant Amelia will only live 6-12 more months.

Who is to decide who is the most deserving to live? Are we going back to the Eugenics Project of the 20s/30s (which was only 80 years ago!)? Has this world grown any in tolerance? Who gets to play God (or whatever higher-power you believe in) and point their finger at our vulnerable children, and say you don't get a chance to live?

Brian is considered “mentally retarded”. You all know I have a problem with that and don’t fully agree with it. But it’s in his records and the medical community would see him that way. If, god forbid, something happened to my baby and he needed a transplant could we be turned away? Would someone look at me and tell me that my baby was undeserving of a transplant because his IQ was less than other’s?

I couldn’t imagine someone telling me my baby wasn’t worth saving.

Someone telling me this boy, this boy right here, wasn’t worth their time.

This boy who has single-handedly shaped me into a strong, smart, patient, and compassionate person.

This little boy who can melt any person's heart.

This person who is the best snuggler in the world.

This person who rubs my cheek and says "I yuv you."

CHOP probably didn’t realize how strong the special needs community is. How big even just the blogging portion of that community is. I’m amazed and proud to be “friends” with so many of the bloggers who have started a petition, been blogging, and spreading the word about this. Most of us have never actually met each other but we have helped each other raise funds for therapeutic dogs, have sent gifts to families who have hit hard times, and are always there to be a shoulder to cry on.

And we're taking this on. Because it could be our children.

Here is Amelia's mothers original account of the story. The blog post that started it all: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/

Here is the petition started by Sunday Stilwell, of Extreme Parenthood, started: http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive

PLEASE take the time to sign the petition and share it with everyone you know. Do it for Amelia. Do it for Brian. Do it for all of the children who have cognitive limitations.

School District Adds Half A Million to Special Education

2012-01-15T10:02:00.000-05:00

There was recently an article run in our local newspaper about a school district that is expected to overspend their special education budget by more than $525,000.

The article goes on to explain that the school says it's in response to a result of demand for services.

It then goes on to say that, "The announcement of the added costs, however, followed complaints from some parents that the district was not meeting the mandatory recommendations of the individual education plan meetings."

As you continue to read they quote one parent, some irate mother who I think sounds much smarter in person than she does in print, talking about how IEPS need to be legally upheld. She also mentions that not only was the academic piece in need of help but the safety of the children was a huge concern. Yeah, that parent was me.

This article has been getting a lot of hoopla in the circles I run in.

I had a case manager tell me that the IEPs she has been going to since then have been so much easier and cooperative. She actually thanked me.

I had a nurse at the ER congratulating me on sticking up for the kids and opening my big mouth.

My father keeps laughing and saying, "That article makes it sound like you single-handedly made that budget increase." And at the same time bragging about it to anyone who will listen.

Well, I didn't do it single-handedly. But I do know for a fact that after getting Disability of Rights involved (thank you!) and our last IEP the school had to add in several consultants from private practices to work with Brian as well as more training and new curriculum. I'm guessing just his changes could make up that half million. Ongoing consultation for a whole year isn't cheap.

We asked for those specialists and changes and they're happening. What makes it really worth it, is all the children in the autism classroom are getting the benefits. The specialists are coming in and looking at the program and showing them how it can be changed for all of them, not just Brian.

And that makes me feel really good.

Artistic Interpretation

2012-01-14T16:43:00.000-05:00

Brian is becoming quite the artist, don't you think?

This came home in his backpack last week. I don't always know how much is completely Brian's work or when he has had a little help but I think this one is probably 90% of his own talent.

I asked who the lady was with the fabulous hourglass figure and he proudly said, "MAMA!". I see he gave me tentacle arms, so I can catch him when he's trying to run away.

I asked him who was in the bed and he said, "SLEEP!". No amount of prodding could get another answer. I'm guessing it's him because the tiny little bit of hair he gave that person is orange, just like his.

I asked him what was in the window and he said, "TREES!". The curtains he cut out are the same color as our curtains in our livingroom. But why is there a bed in our livingroom?

And is that a "DQ" painted on the wall in the left hand corner? Was he dreaming of ice cream this day in art class?

Not really sure what the story is in this picture, but I like it. It's getting framed.

Successful Reasoning

2012-01-13T13:28:00.000-05:00

Brian has refused to take a bath or shower since his fall last Saturday.

Gross, huh?

But honestly, I felt this was a positive step. He correlated his injury to the bath and he remembered it, therefore finally putting something into his brain under the category of "danger". This kid still has no fear of vehicles, heights, or strangers.

Today, after him being sick all last night, I kept asking, "Are you ready for a bath?". And I kept getting him screaming "NO" at me.

We were lying in bed and I whispered the request to him again. He answered negatively and I watched his hand go up and faintly touch his stitches.

I kept my voice low and calm and said, "Brian you know it was slippery in the bathroom because you dumped shampoo & conditioner all over the floor, right? When you dump out all the bottles onto the floor it makes it really slippery and that's why you fell. If you go in and take a bath and don't dump the bottles out it won't be slippery."

He was quiet and I allowed the pause.

I then asked, "Do you understand what Mama said?"

And he said, as clear as day, "Yes".

I asked again, "Are you ready for a bath?".

He replied, "Yes."

And off he went to the bathroom.

Thank god, because he was starting to really stink.

I'm still amazed at what he does understand receptively when at other times he just seems to not understand a single word. It's simple moments like these that make me push his educators and therapists. He understands a whole lot more than he lets on.

Just Another Side Effect

2012-01-11T20:24:00.000-05:00

Every so often I check my blog stats. When I do this I can see which posts are getting the most views, where in the world my readers are located, and I can even see what search terms people type into Google that bring them to my page.

Usually that last section gives me a few laughs, however today I froze. I reread it again. I couldn't believe the sudden onset of emotions I felt.

I had read...

i hate being autistic i don't want to go on any more

People who know me know that I struggle with this so much. I hate autism. I hate it. I hate it. I hate it. People look down on me for saying it. They think because I say it I don't cherish and value my son. This is so far from the truth. I love my little boy more than I can even fathom. I will always love him with this immensity and intensity regardless of his functioning level. But do I wish more for him? Of course I do.

I can see autism as a separate entity from my son. It is not who he is- it's a roadblock that is making his life harder than others'. It effects him medically, cognitively, socially, emotionally, neurologically, etc., etc.

I watched him the other morning throw himself on the ground in the middle of the playground screaming and banging his fists on the ground when it was drop off time. Did I know why? Nope. And I spent the rest of the day wondering what was going on with my little guy. How unhappy is my little boy? How confusing is the world around him? How frustrating is it for him to not be able to tell me what's wrong?

I hope with all my might my son will be able to navigate Google when he's older but I certainly hope that at that point we have eradicated autism as much as possible from his life. I hope autism isn't making him feel so much of an outcast that he one day feels that he can no longer go on.

Just another side-effect of autism. Again, I hate autism.

By the way, is there any way to figure out where that specific searcher is from? I wish I could give him/her a hug and talk with them. I wish there was a way to show them their own self-worth.

I Wanna Be Sedated.

2012-01-08T10:43:00.000-05:00

Yesterday we spent eight hours in our local ER so Brian could get stitches.

A lot of our friends and family called to check on us and again and again I heard myself saying, "It's not a big deal, autism just turns it into one."

Sure getting stitches is hard for any child but have that child have autism, a language barrier, sensory dysfunction, and just a general confusion of what exactly is going on and it becomes a nightmare.

When we first arrived at the ER Brian was still in shock. I had to carry him in, he wasn't making any vocalizations, and was limp. His lethargy scared the hell out of me. My little boy is never still for more than a minute.

The nurses fussed over him and looked at me like I was just trying to blow things out of proportion when I told them upfront he had autism and this was going to be a difficult visit. He allowed them to take his blood pressure and temperature without even moving on my lap. They continued to roll their eyes at me.

We finally got back to a room where it took forever for a doctor to come in. When she finally did she started drilling him on how he got the gash on his forehead even though I had already told her he had fallen in the bath. For a few minutes I thought she was just being friendly and then I realized she really didn't know he couldn't talk...wasn't that the whole point of telling the nurses up front so it could be carried along? I said, "He is functionally non-verbal." The doctor looked at me and said, "Really? Do they know why?". So I took another fifteen minutes explaining he had autism and what that meant as it related to our ER visit.

After my long explanation she told me her plan was to put on numbing cream, wait 25 minutes for that to work, then do a numbing injection, and then the stitches.

I laughed. Seriously, laughed out loud.

As soon as they tried to get the numbing cream on the gash my boy finally came out of his shocked stage.

The young doctor looked at me and I swear her eyes had tripled in size while it took three professionals to apply the cream.

Waiting around for stitches.

She left, shocked, not saying a word.

She returned another twenty minutes later asking me to sign a release for him to be sedated.

We waited for hours to be sedated.

And my boy ran around, laughing, skipping, and yelling "I'M HERE!".

He was an angel. He had much more patience and cheer than I did.

Finally it was time for his injection. I watched as the blue scrubs filled the room. They were prepared this time.

Five adults to hold him down and he still managed to break free and grab the gauze off the injection site. My eyes welled up as I watched his eyes roll in the back of his head.

I swallowed hard because there was no way I was falling apart at that point. I was going to hold his little hand through the stitches. I would not leave my baby on that table all by himself.

The stitches were quick, only five of them, but even so he started to stir out of the sedation before it was even done. His arm, that I wasn't holding, reached up to push the doctor's hand away as she worked. The doctor's eyes again grew as she exclaimed she had never seen anyone come out of it so soon.

We spent another lifetime waiting for the effects to wear off as his stomach did not agree with it. Vomiting over and over again despite the anti-nausea medicine they gave him. However he kept smiling and rubbing my cheek and saying "Home".

And finally we left- leaving a trail of vomit behind us even in the waiting room. 8 hours and 5 stitches later.

Now the real adventure begins of trying to have him keep a bandage on for at least a week and no picking for three weeks.

All of that for this little scar.

What Did You Do On Your Christmas Vacation?

2012-01-03T18:48:00.000-05:00

Today was the boys' first day back to school.

As I drove away after dropping them off I started thinking about all the kids sharing what they got for Christmas and the fun ways they had spent their vacation.

And I wondered what Brian would say if he could.

I think it would go something like this,

"For my Christmas vacation I wanted to have a marathon movie watching day every single day but my mom just wouldn't allow it. However I did become a bit attached to a new movie, Peter Pan, and have acquired some great scripts from it. My mom just LOVES when I yell "I CAN FLY!" and I jump off any surface I can find onto her back. She makes a funny snapping sound when I do it. My other favorite script is "FIRE AWAY!!".

One morning when I was taking a bath I decided to do a science expirement. I only had five minutes of unsupervised time but I managed to dump out three bottles of lotion, a bottle of hair gel, a bottle of conditioner, another of shampoo, and spray a lot of the hairspray right into my tub. It smelled great! My Mom wasn't pleased....maybe, she didn't like the smell?

Yesterday I really wanted to look pretty so I opened up my Mom's body shimmer. I dropped it by accident and now our WHOLE livingroom is sparkling! It wasn't my intended outcome, but I like it!

Oh, I also broke my second pair of $150 therapeutic listening headphones. Same way. I propped them up and then stepped on top of them and snap. Again, for some reason, Mom wasn't too happy.

I had a great Christmas. I got THREE new Thomas engines!!! Yes, I opened a dozen other presents but I forgot what those were. Can you believe I got THREE NEW THOMAS ENGINES?!?!?!

I got to sleep in my Mom's bed a few nights during vacation and I just love when she lets me do that. I love to sleep sprawled right across my Mom and moving every five minutes. Mom complains but she's always smiling and continues to snuggle with me so I don't think she really minds.

So those were my highlights. Bet you can't beat that!!"

Just Imagine.

2011-12-29T17:47:00.000-05:00

Corbin had narrowed his lunch choice down to pizza or macaroni and cheese.

Corbin turned to Brian to ask him what he thought about it.

Brian ignored the question. I tried to repeat it but it was obvious that the words were just not registering for Brian. Mainly because we were in the dreaded grocery store. You know the one. With all the smells, the flickering/humming lights, and people everywhere!

So I directed the boys to the frozen aisle and pulled out a package of Udi's pizza crusts and Amy's mac and cheese and asked Brian again, "Pizza or Mac and Cheese?".

Brian's face lit up and instantly pointed to the pizza crusts and yelled "PIZZA!".

Then Brian's face immediately fell as I put the crusts back into the freezer.

I tried to explain to him as much as I could that we had several packages of them already in our own freezer at home and I was on a budget and I didn't want to buy products we already had. Yeah, like that lengthy one was going anywhere near his frontal lobe.

He seemed okay, a little whiny, but perked back up when I told him to grab a package of pepperonis to put on his pizza.

I thought the crisis was averted until we pulled into the checkout lane. All of a sudden a floodgate opened and Brian just started crying. Tears running down his face, screaming cries, and jumping up and down for me to hold him. I pick him up briefly and I see the older man ahead of me shake his head as he looks at Brian's feet dangling down past my knees and my frame almost snapping backwards in the effort to pick him up. I look him directly in the eyes and his stare falters.

After a few minutes of holding Brian I have to put him down. He's heavy in his own right but add the winter coat and the boots and he just becomes even more awkward to hold. As soon as his feet hit the floor he starts crying again and this time starts yelling, "Pizza!".

If I hadn't been next in line I would've run and got the crusts at this point but once again I stooped over and heaved his bulky frame up into my arms. Once again I see people looking.

Honestly, if I knew it wouldn't send my child into even more of a meltdown I would've started screaming at the onlookers.

Really, all I wanted to say to them was, "Imagine struggling everyday to tell people around you what you want or need. Imagine it being a real challenge to get those neurons to talk to each other and finally succeeding in getting ONE word out that makes sense to those around you. Imagine then not having the auditory processing ability to always understand how the people you love respond to that word. Imagine feeling quite successful in the fact that you could say what you wanted for lunch and then thinking people around you didn't understand. Imagine having the full IQ capability locked up in that beautiful brain of yours but not being able to access it at will. Imagine having language, that thing we all take for granted, taken away from you. Then tell me you wouldn't feel like screaming."

We finally made it out of the store thanks to Corbin. Who loaded the conveyor belt, pushed the cart, and even ran the debit card. My nine year old son had more compassion in his pinky than most of the onlookers at the grocery store that day.

Once we got home I ran in, pulled the Udi's crust out of the freezer, and handed it to Brian. And finally Brian smiled. He knew his request had been heard.

I'm A Believer.

2011-12-11T14:53:00.001-05:00

Over the past couple of weeks both boys have been to a homeopathic doctor, the pediatrician, a psychologist, an AAC expert, and of course our regular weekly visits with the occupational therapist and speech therapist.

Within the next month or two we're planning on seeing a neurodevelopmental therapist, a developmental pediatrician, a behavioralist, and a neuropsychologist.

It's a lot. And sometimes I just wonder why am I doing this? Sometimes I think I'm wasting a lot of money, energy, and time.

However, it's not in my nature to just sit and continue on our current path if there are avenues we haven't explored. If there are new concerns that are popping up I'm not going to just sit still and not try to figure out what we can do about it.

I'm not a skeptic, obviously. I'm a believer. I hold on to hope that there are keys to each one of my children that if we find it we'll see changes. I am a believer because we have found those keys for certain areas like gut issues and self-injurious behaviors. I am a believer for my own children and for all the children that I work with.

"Someone" asked me today how I was making all this money to pay for it all. I just simply answered, "I find the money. If there is a door that opens for us and the only block is a financial one, then I'll cut something else out from our expenses. We don't have to go to the movies or have the newest gaming system out there."

Tomorrow we drive two hours to see a neurodevelopmental therapist that is trained and certified in everything: Bal-A-Vis-X, Brain Gym, Rhythmic Movements, Masgutova, Jin Shin Jyutsu, Craniosacral, and a ton more. She's only here in the state for one day to do consulting and I feel very blessed to have both my boys being able to be seen by her.

So while that "someone" grumbles at me for spending my money (and where it's his place, I'm not sure), I can only look at it with my optimistic eyes that maybe she'll help us move our current therapies in a new direction and we'll see even more growth.

I look at it as I'm giving my two boys the best Christmas present I can- another chance to ensure their future is as bright as possible.

Continuing the Fight

2011-12-01T21:26:00.000-05:00

If you've been following along at all on this blog then I'm sure you are familiar with our struggle with our local school district.

In the past few months I have obtained legal advocacy, evaluations, and had some very interesting IEP meetings.

Today was another one.

Three hours long.

The longest IEP meeting I think I have ever participated in as a parent or as a practitioner.

In the middle of the meeting I took the moment to address the team and tell them that everything they were laying out on the table sounded wonderful.

Sounded.

And I emphasized the word. Because I feel like I've been hearing about these changes but not seeing them.

I reminded them that we are nearing halfway through the school year and the ENTIRE school year thus far has been a waste of my son's time.

My son is not there to be taken care of as if he's in daycare. He is there to learn. It may be harder to teach him and to figure him out but that is their responsibility. He has a right to an education.

The feeling of the room was somber and there were a lot of nodding heads around the room. I, honestly, think they all agree with me, yet because everything is so fragmented and there is no background, experience, education, or training going on they do not know how to do it. Again, not Brian's problem. It's their problem. They have a real problem on their hands.

Agreed upon today was training (who would've thought it? autism training for an autism program? huh?), hiring an autism specialist consultant to be used on a continuous basis, weekly 30 minute meetings for his entire team to get together and discuss him, adding TouchMath and Project Read to his curriculum, lunch bunches, increased time in Special Education, hiring an AAC consultant for continuous use (monthly), an individualized structured sensory diet with regular sensory breaks every 30 minutes, and new data sheets to track his engagement.

I'm again feeling a range of emotions. I'm feeling sad for the time that has been wasted and the growth that we could have seen if his programming had been up to par to begin with. I can't believe how much easier it is to get what I want when I have an advocate in the room. Unbelievable because I have asked for some of these things in the past and always been told it wasn't possible.

I'm feeling proud for not giving up and continuing to push. I'm really being positive that because of this whole situation all of the kids on the spectrum at Brian's school will benefit. I'm hoping I'm shaping a program for all of them.

When I left the school today a staff member that I don't even know other than seeing her in the hallways stopped me and asked how my meeting went. I told her it went well. She asked if it was done. I told her that we had some more evaluations and consultations so we would be meeting again shortly. She shook her head in disbelief over the time we've put in so far and she said, "We've all been rooting for you Heather. We think it's amazing what you're doing to make sure Brian's rights are being met."

And with that I smiled. It's nice to be acknowledged for the fight that many of us parents of kids with disabilities have to do all the time. It's hard work, but we do it because we have to.

We do it because they are so darn cute. ;)

Vindication & Sadness

2011-11-29T21:46:00.001-05:00

The district's psychologist called me this afternoon to discuss what he was going to say at our upcoming IEP meeting.

He cut right to the chase and said Brian's entire program needs to be rebuilt.

He started to spout off a bunch of different things and then he paused and asked "Well what do you think of his program? "

I also paused wondering just how blunt I should be. Then I said it.

"I often feel I'm just sending my child to a daycare all day long. "

It was a conversation marked with pauses as he took another minute. I started to think I had been too rash and had maybe lost one of my allies.

"I actually wrote the word 'daycare' during one of my observations," he said.

He then said, "Brian deserves an education just as much as all of the other students in that school and I don't see that happening."

Two feelings washed over me: vindication and sadness. I felt vindicated because here was a professional the school hired that agreed with everything I've been saying. Sadness because everything I had been saying and assuming was true.

Dear Santa.

2011-11-27T18:03:00.003-05:00

"Brian, want to write a letter to Santa?"

"Santa."

"Okay, well what do you want for Christmas?"

"Christmas!"

"Do you want trains?"

"Trains!"

"I want..."

"I want more trains!"

Perhaps the most simple letter Santa has ever received, but actually the first one I've tried to get Brian to write. Prior to this year I always just had Corbin write a line in his letter for his brother.

After sealing and delivering the Santa letters I started to think about what Brian would really ask for if he could and I think it would go something like this.

Dear Santa,

I have tried my hardest to be on my best behavior this year. My sensory difficulties and lack of verbal skills really get in the way sometimes Santa but I really do try!

Speaking of which Santa, it would be killer if you could make the connections in my brain work easier so I could find the words I want to say when I want to say them. It really blows when I can't tell people that I want to listen to the Bee Gees or can't tell them that I'm hungry or that I just need to use the bathroom.

Also if it isn't too much could you make the bathroom more sensory tolerable? And maybe just take away all the anxiety I have around going to the bathroom. You see, I'm often constipated (sorry for TMI Santa!), and because of the years of being constipated I've developed some REAL anxiety around the bathroom.

Could you take away my intolerances and heal my gut-brain connection too? I really hate having to always watch what I eat and then being sick for days because I climbed the counters and ate something I wasn't suppose to. I'd really like to be able to eat apples again- they are my favorite- but I break out into rashes and become SUPER hyper (more like manic but I try not to use that word) every time I try to eat one.

I'd like for clothes to not bother me so much. I'm seven now Santa and I know it's funny for me to only want to wear pajamas but really they are the most comfortable thing out there! You could just buy me a whole wardrobe from Soft! Their clothes rock but my Mom doesn't have the money to replace my whole wardrobe.

Something like this would work, Santa.

I'd like to have a sensory room Santa! Complete with mats, huge beanbag chairs, tube lighting, a ball pit, a squeeze machine, a variety of swings, scooter boards, and a huge boatload of fidget toys. Some tunnels, body socks, and weighted blankets too! I'd love to have a room to escape to when I'm feeling overwhelmed!

Could you open a school in the area that gives kids of ALL abilities an equal playing field? Using an alternative way to teach kids like me who aren't very strong in the language area. I'm very smart Santa but sometimes people have a hard time figuring out how to unlock that.

Santa, I'd really like to make some friends. Kids at school are very nice to me but I have a hard time making real friendships because of my language (refer back to my first wish please) and I have a hard time reading social cues (in fact, I'm not even sure what that means I just hear the grown ups around me saying it). Sometimes I try to get close to other kids but I guess I get too close and they also don't seem to like it when I pick the lint and hair off of them. I could really use some help in this area!

Santa could you somehow spread a bit more compassion into the world? My big brother has had kids tease him for having a brother with autism, my mother has had strangers advise her on what bad parenting skills she must have because her child is throwing a fit in the grocery store (sensory overload!), and I get stares every time we go out to eat. The stares don't bother me too much Santa but I see the pain on my Mom's face. They bother her no matter how strong she pretends to be.

And last but not least Santa, I would really love some more trains.

Love, Brian

I Got It From My Mama

2011-11-15T20:55:00.000-05:00

No words needed. Just sit back and enjoy.

Overdid the Therapy.

2011-11-14T10:00:00.008-05:00

Corbin: "Mom when did I start speech therapy?"

Me: "A little before you were two."

Corbin: "Wow, you knew that I couldn't pronounce my Rs way back then."

Me: "No Corbin at that point you weren't talking at all. Not a single word. You had speech therapy so you would start talking."

Corbin: "I think you overdid the therapy Mom, now I can't stop talking!"

Ain't that the truth.

The Next Zoolander.

Trains! Trains! And More Trains!

2011-11-13T12:47:00.001-05:00

Corbin got a new Harry Potter Lego game for the Wii.

Brian has been eagerly anticipating his turn to play it.

I watched him as he rushed through the different playing scenes, paying no attention to doing any of the side missions.

He was always in a hurry and became exasperated when he couldn't quickly get to the next scene, throwing the controller at me, yelling "HELP ME!"

Until that is.....

He gets to Platform 9 3/4. For all you Muggles out there, that is where the Hogwarts Train comes to pick up the students.

Yes, a train.

He then stopped and jumped and flapped while yelling, "A train! A train! A train!"

He made his character get on the train where they then get let off at Hogwarts and the train disappears.

Hanging out.
Waiting for a train.

Brian WOULD NOT move his character to the next scene. He kept them on the platform.

At this point, Corbin (who is watching his brother play) becomes very distraught.

I remind Corbin that this is Brian's 1/2 hour of video games and he can play it however he wants.

After five minutes of Brian walking his character up and down the platform while smiling and flapping....

the TRAIN COMES BACK!

Brian was so excited! Corbin and I were astonished, after we had just spent the last five minutes telling Brian that the train wasn't going to come back. We watched Brian load his characters on and off the train about ten times between Platform 9 3/4 and Hogwarts (after that first initial wait period the train is always there for him to ride).

It never ceases to amaze me how many video games and movies have trains in them and my child's memory for knowing EXACTLY where in those games and movies the trains appear. One day I watched him put in The Aristocats, Iron Giant, Dumbo, Anastasia, and Bolt one right after the other- going straight to the train scene, watching it, then putting in the next movie and doing the same.

Trains are everywhere! And because of that Brian is one happy boy!

And the Winner Is....

2011-11-13T11:14:00.000-05:00

I'm in a giving mood so I decided to pick TWO winners!

Congratulations to both Kathy Sima and Megan Watts!

I'll get your autographed copies out this week.

Thanks to everyone for following our adventures and for entering the contest!

Again and Again and Again...

2011-11-12T21:53:00.000-05:00

Brian was doing his manic thing on my bed, rolling around, hiding under pillows, kicking the blankets around, making lots of repetitive screechy sounds when he stopped, looked at me and said, "You okay?"

We play this game a lot and I replied my usual answer, "I'm okay. Are you okay?"

He laughs and goes back to his thing.

Stops and says, "You okay?"

I answer, "I"m okay. Are you okay?"

He giggles and starts rolling and kicking and screeching again.

He stops, "You okay?"

This time I say, "Yup."

He stares at me confused, "You okay?"

I try another answer, "I'm good."

His grin is slowly starting to disappear, "You okay?"

I decide to push it a bit further, "I'm fine, thanks."

He goes to very serious mode as he reiterates, "You okay?"

Sigh. "I'm okay. Are you okay?"

Instant facial expression change from serious to silly, manic-giggling boy.

Ten seconds later...."You okay?"

And so goes the life of repetition.

10 Things I Actually Retained

2011-11-10T22:00:00.000-05:00

Today I completed nine hours of work, attended three parent/teacher conferences, had a 1/2 hour phone appointment with the school's psychologist, and spent an hour at the doctors office with the boys.

So I'm going to word-vomit here and see what I actually did retain from today.

1. Corbin rocks at math. Corbin's teacher flat-out said he was the best in the class at math. The psychologist said Corbin just talked and talked and talked about how much he loves math. Corbin exclaims, "I want to be just like Mom and travel all over the country and win math trophies."

2. Corbin struggles with absolutely every other subject in school. When asked by the psychologist what he would rate school on a scale of 1 to 10 if there was no math he says he'd give it a measly "3". This worries me to no end.

3. Corbin's special education teacher says Corbin isn't spelling words because he is rushing. I'm not saying that he doesn't rush through things but three words for all of you teachers at his school: AUDITORY PROCESSING DISORDER.

4. I'm on a mission to decide what is the best possible math curriculum for a non-verbal autistic child. Input would be appreciated.

5. Doctor appointment for Corbin because I thought he had a urinary tract infection. Turns out he's probably constipated (oh the things my kids are going to hate me for posting when they are older). However, we end up staying at the doctor's office for 45 more minutes discussing Brian.

6. Tomorrow I get to bring Brian in for a chest X-ray. Doctors are all still on the fence with this asthma thing even though we did get that diagnosis at one point. X-Rays are always a blast. Rolling my eyes.

7. Our wonderful pediatrician is getting us hooked up with a developmental pediatrician and putting in a call to the school to see if they will consult with a certain ABA specialist that we just adore and have been pushing for him to consult with our school for years now.

8. Corbin has a high IQ, not new news. Yet some subtests are as low as the 2% while others are in the 95%, Again, not new news. But like every time I hear it I get so frustrated with figuring out how to help him learn and achieve that potential I know he has.

9. Brian's IQ scores come out pitiful. Not new news. The new news this time? This psychologist actually AGREES that there are no IQ tests out there that can really capture a functionally non-verbal child's capabilities. Instead of concentrating on scores he's researching programs that he thinks will work for Brian's style of learning and going to be pushing for them to be used at the school (think lots of electronic modalities).

10. Right in the middle of Brian's parent/teacher conference he plopped himself in front of me and said "BOO!" and waited for me to act scared. He then did it to Corbin and to his teacher. Too cute!!

Making Our Way: Autism

2011-11-08T20:09:00.000-05:00

Brian is famous.

For many reasons, in my mind.

But really he was on TV the other night.

In a documentary about autism.

Yes, it was mostly about another Maine family and about first responder training....but there was some clips from the last walk we participated in.

There's me, introducing Brian, and then I prompt him to say hi and he does.

Such a tiny moment but gosh, that kid is cute.

I'm not biased or anything.

Watch Making Our Way: Autism on PBS. See more from Making Our Way: Autism.

We're right around the 53 minute mark...you know, if you're interested.

CONTEST! GIVEAWAY! WOOHOO!

2011-11-06T08:00:00.004-05:00

In honor of my oldest son's birthday I'm going to do my first-ever giveaway!

What is it, you ask?

You'll never guess!

It's a copy of Wit and Wisdom from the Parents of Special Needs Kids!

And it will be autographed by Brian himself!

This cool widget is kind of self-explanatory but you "earn" entries by following me on twitter, on The A-Word's facebook page, by tweeting about the giveaway, and/or by leaving a comment below!

Good luck!

**EDITED TO ADD: I noticed when I was viewing my blog that the widget doesn't always show up on the main page- please press the link that says "Read More" and then the widget will show up with all the buttons that allows you to put in entries to win the book! Don't forget you can tweet about the contest every day and get a different entry for each tweet! ALSO, if you already "like" the facebook page or follow me on twitter please know you can still get an entry for that! You don't need to be a new follower :)**

Sleep is for the Weak

2011-11-05T11:48:00.000-04:00

Brian decided sleep was for the weak.

Woke up for the day at 2:15 on Thursday morning.

Fell asleep around 4 Thursday afternoon and couldn't be woken up no matter the amount of jostling.

Then was awake again, for the day, at 1:30 AM on Friday morning.

I, on the other hand, require sleep. A lot of it.

And it makes me grumpy to not be well-rested.

However, when I'm done pretending I'm still asleep, I turn on my bedroom light.

He immediately bounds over from his room with a little skip in his step and stops in my doorway.

He tilts his head, gives me the cutest grin, clasps his hands in front of his chest and says, "Mom! Hi Mom! It Mom! A Mom! Mom!"

He stays right there, grinning, until I say, "Hi Brian!"

He repeats, "Mom! Hi Mom! It Mom! A Mom! Mom!"

I laugh as he continues to stay glued to one spot.

"Do you want to come in Brian?"

He then sprints in and jumps on my bed and gets under the cover and starts squeezing my cheeks and playing with my hair while repeating, "Mom! Hi Mom! It Mom! A Mom! Mom!"

And no matter how sleep-deprived I am, I just can't stop squeezing him and being astonished at how much I love that little boy.

Sleep is for the weak.

Does the diet really work?

2011-11-05T10:15:00.000-04:00

I get this question a lot.

At first I took it with stride. And really even still I'm usually excited to share our successes.

But when it's asked with that incredulous tone and that mocking look, sometimes I just wanna answer with something like this...

"No, I just love spending seven dollars on four bagels."

"I just do it because it's fun to limit our restaurant choices when we want a family night out. "

"No, I just like to devise another way to make Brian feel different."

OMG! Daiya is on sale for $4.99! That's right! 8 oz of fake cheese could be yours for that steal!

Okay. End of snarkiness.

Surviving Another Halloween

2011-10-31T21:56:00.001-04:00

"Brian are you ready for trick or treating? "

One simple question that brought on a tantrum like no other.

He threw himself on the floor as I held his Scooby Doo costume that he picked out and repeated, "Remember you get candy! ".

Twenty minutes elapse and nothing has changed except I have an anxious Corbin at the door waiting for his brother.

Finally Brian rips the costume out of my hands and throws it on,though still screaming through the whole ordeal.

He runs outside still crying and howling. Imagine how much louder he gets when I approach him with a hat and mittens.

I'm wishing, at this point, we could just skip the whole tradition. However, I have another child who had been waiting for this night to arrive for weeks.

We drive to our usual Halloween neighborhood and Brian immediately jumps out of the car still screaming.

I'm starting to wish I brought noise-cancelling headphones for myself.

Instead of saying "Trick or Treat" at the doors he just cries obnoxiously and knocks over any children in his way.

Six houses later I realize he has stopped crying.

Is that a smile?

Now he's leading the group of kids we're with.

When I ask him to wait for the other kids he does all while saying "Gotta gotta gotta walk! ".

He never once tried to go into a stranger's home. That's huge progress from previous years.

He always took just one piece of candy and always grabbed something he knew he could have (lots of lollipops).

It was a rocky start for sure but we persevered and conquered another holiday.

The Next Tim Gunn

2011-10-30T20:01:00.000-04:00

I had the pleasure and privilege to go to the Bare Truth Project gala this past week. It was a gala celebrating the work of three photographers who decided to do a collection of breast cancer survivors and their scars to raise awareness. My friend Amy was one of the beautiful models and I wanted to support her however I could.

But....

There was the issue of what to wear.

I'm very indecisive. Just putting that out there.

I sent pictures of different outfits to probably no less than 15 close friends asking for their advice until I finally had it narrowed down to two dresses.

The night before the event I was once again trying on both dresses and trying to make a decision.

Corbin came into my bedroom and looked at both dresses and pointed to the black-and-white one and said "Mom, that's just a regular dress." He then started stroking the sparkly-neutral dress and said, "But this one. This one is like gold. It's something special."

I laughed...but he was right. He knew what he was talking about.

Corbins' Pick.

I told my Aunt the story the next day and she said, "Corbin's the Tim Gunn of the next generation."

And she's so right.

The kid knows fashion. I'm not saying that he really cares about what he looks like every single day but when he wants to look good he does it. He puts together combinations I wouldn't even think about.

He loves fedoras and ties and popping his collar.

He notices when I have new shoes and always comments on them.

He's definitely been brought up by a single mother.

Just another reason I love that kid.

October 24.

2011-10-24T07:30:00.001-04:00

Every year I do a similar post and I may be running out of things to say about it.

However, every year I wake up and look at the calendar and a big rush of emotions come out when I realize it's October 24th.

October 24th was Corbin's duedate 9 years ago. I'm not sure why his due date always sticks out to me so much but I have a feeling it's because he made me wait TWO WEEKS to meet him.

He doesn't like to do things the easy way, never has, and I cherish him teaching me all of these lessons while I wait for him to reach goals in his own way. The first gift he gave me was patience.

Love that boy.

Finding That Balance

2011-10-22T20:15:00.000-04:00

Lately I have been submerging myself in work. I'm so excited about all of the new learning I've been doing that I can feel my neurons doing the happy dance. The world is starting to make sense to me, I'm starting to make sense to myself, my clients are starting to make sense to me, and most importantly my children are starting to make sense to me.

I feel blessed that I'm working in a position that allows that carryover to happen right here in my very own home. It makes me ecstatic to think about all of the new things I can try with the boys and I feel refreshed when I can let go of baggage and go at a difficult situation (example: studying spelling words with Corbin) with a whole new outlook.

However, as excited as I am and as much as I feel like I'm going to burst at the seams with happiness over this new knowledge, I'm finding it hard to keep my energy level going all day with my clients and come home and have that same energy level for the most two important children in my life.

It's about finding that balance and I'm still searching for it right now.

I come home from work, most nights after 6:00, and I'm tired. The kids are tired too after a full day of school (where they're being slaughtered with executive higher-learning functions when they aren't ready for it- but that's a whole other post), then they have therapy, or an after-school sport, or if they are lucky just an afternoon at the pond looking at the natural habitat and trading praying mantises for tadpoles.

Then I come home and I have to make dinner. Then we have to do homework. Then baths. Then supplements. Then bedtime. Bedtime would be the time that I try to sneak in a little bit of reflex integration...but some nights I'm even too tired for that- because I'm thinking about the dishes I've left in the sink or the group I have to do in the morning or the fact that if I don't do laundry I might not have a clean towel after my shower in the morning.

I know this is still new for me- the working full-time bit and the not-having-another-adult-in-the-house bit- and it will take patience and shifting of our routines to feel really comfortable.

Despite the difficulties it has added to our lives and our routines I don't feel that guilt piece at all. And that makes me know that I'm doing the right thing. I know that everything I'm doing is making a better life for all three of us. I know that everything I'm learning, with the purpose of learning to be a better occupational therapy practitioner, is in turn making us into a better family. What more could you ask for in a job?

Now that I've rambled, are you a working parent? How do you make it work for your family?

The Inside Scoop with Corbin

2011-10-21T20:47:00.000-04:00

I'm slow. And I'm busy. But I finally got around to posting this interview I did with Corbin after being hit up with a meme from Karen over at Solodialogue.

You know how memes work- they have rules- you HAVE to follow them or you will be stuck with bad luck for seven years (okay, not really, but it does kind of remind me of those chain letters) and then you pass it on to some other lucky bloggers to carry it out.

This one was fun and I'm sure Karen was hoping I would interview Brian but I'm just going to admit that this blog post wouldn't have happened until like December if I had to make up all the communication boards for him to answer each question...unfortunately he's not at the stage where he can verbally answer any question other than how to spell things. Even "yes" and "no" questions have proven to be difficult as of late.

I took the questions directly from her blog and asked my oldest boy, who of course loves to be included in these things. Without further ado....(and with no correction of syntax)....

What do you want to do when you grow up? I will want to be a scientist.
Favorite holiday? Christmas. What makes it best? Because you get too much toys.
If you could live anywhere, where would move? Somewhere that do not have too much kids.
Who is your best friend? Jacob. What do you like about him? He's so tough.
What toy would you buy for your best friend’s birthday? Whatever he likes.
What do you want for your own birthday? I want a pet.
What family rule do you think is the most unfair? No playing DSi until your room is clean. Why? Because I love playing my DSi.

Now who would like to join in on the bandwagon? I'm not going to link to anyone...I'm such a party pooper aren't I? I'm exhausted after a 9 hour conference today. Excuses, excuses, right? Please feel free to interview your little one and leave a link in my comments because I'd love to read them!

Playground Education

2011-10-12T20:19:00.000-04:00

From the backseat Corbin’s voice rose, “Mom, when soccer is done will you please sign me up for karate classes?”

We had been talking about doing so for a while so I replied, “Yes, I told you we would look into it after soccer.”

A moment of hesitation and his voice rose again. “I really need to know karate Mom.” Pause. “For the big kids on the playground who make fun of Brian.”

I tried to keep the van on the road as I quickly went through the emotions of surprised, shocked, sad, and angry.

After I had myself in check I calmly asked him to explain what the kids were saying and why they were saying it.

Corbin went on to tell me that he likes to tell people about autism. He said, “I want Brian’s autism to be gone Mom, I really do. But autism is also cool sometimes. It’s hard to understand so I want the other kids to know about it.” A month or so ago I told Corbin that people’s hate usually stems from ignorance and I think the kid took it to heart and wants to educate the world.

I told him I completely agreed and that Brian’s autism has taught both of us a lot of things and made us really great people because we are tolerant of differences and we even embrace differences. I told him that sometimes autism made for really fun things for us to do like jumping on couches, having a swing in our kitchen, and going to really fun ASM retreats.

He told me that the kids he’s been growing up with since Kindergarten seem to really like to hear about it, but the bigger boys on the playground repeatedly say things like “Autism is stupid”, “Brian can’t talk because he is dumb”, and even remarks such as “Brian has to have cold lunch every day because he is stupid.” (Really guys? Cold lunch means he’s stupid? Really grasping for some straws there.)

Why are people so mean? I was going to ask why are kids so mean? But it’s not just kids. Kids learn it from their parents, other significant adults, and of course media. It broke my heart for Brian and for the challenges I’m sure he’s going to continue to face as he grows older. However, I think it broke my heart even more for Corbin who is such an amazing older brother that just wants to educate the playground. He is proud of his brother and he is proud about his own knowledge about autism and to have a “bigger boy” or group of them to challenge it right to your face and call your little brother “stupid” is heartbreaking. It’s heartbreaking for me, how does it feel to my 8-year-old son?

Every year I’ve done a small awareness project for Brian’s classmates. Sometimes I talk to them a little bit about it and sometimes I just send home kid-friendly brochures on autism. I think it might be time for a school-wide awareness project especially since this school is housing “The Autism Program” in our district (whole other joke- believe me, we’re still heavily working on that one).

I need to take my own advice and hope that knowledge will eradicate ignorance and bullying and just plain mean spirits. And I think Corbin is going to be my co-partner on this one- he clearly knows what he is doing. Absolutely love that kid.

Oh and the conversation on karate and how it can’t be used on bullies will have to take place on another day when I am over feeling immensely proud of my son for talking about autism on the playground.

Goosebumps.

2011-10-11T18:58:00.002-04:00

Tonight Corbin brought me the book, Wit and Wisdom from the Parents of Special Needs Kids, (by the way, have you heard of it?) and asked me to read the section that I wrote.

I started to read, while editing the few parts I didn't want him to hear (late night margarita anyone?). Corbin sat near me intently listening. Brian jumped around the room unaware of what was going on.

As I finished Corbin looked up at me and said, "Good job Mom".

Brian stopped flapping and jumping and walked over to me. He PATTED MY ARM and said "Good job" while looking me in the eye. Yes the "good job" was probably in imitation but he added the pat all by himself.

Go ahead, reread that part.

Patted my arm, said "Good job", and looked me in the eye.

Goosebumps. I've still got them.

Thoughtful Recap

2011-10-06T20:46:00.000-04:00

On Tuesday I had the last phone appointment covered under the Bright Eyes grant with The Johnson Center (formally known as The Thoughtful House).

Just like every appointment I've had with them- whether it be by phone or in person- it lifted me up just when I was starting to feel very "stuck" and in a place of losing motivation.

It was bittersweet, to say the least.

I entered our family into the grant application process without ever really thinking we stood a chance. And when Brian was one of fifty children picked out of a pool of FIVE HUNDRED, I could hardly believe it.

When I look back over the year I am amazed at how much we've been able to change and implement and how much progress Brian has made.

Talking to the nutritionist this time I was feeling down about how much Brian's diet is lacking in minerals and vitamins and she told me to stop and then she started to recite where his levels were a year ago. And it blew my mind at how much better his diet is now.

I think about where he was academically and how much progress he has made.

I think about how when we first went down to Texas Brian never slept. And now a night with any waking is the exception.

I think about the unexplained tantrums he was having and how they were explained by realizing his gut situation and how repairing that took away the tantrums.

I think about how much pleasure it brought me to hear family members exclaim over how well he was tolerating family events.

Some days are hard for sure. Yet when I put it into perspective and can really think back to where we were a year ago....well, it brings me to tears.

The Johnson Center isn't going to get rid of us that easily as we will be staying on as clients, only now we'll be scraping by and having to be a bit more choosier on the tests we choose to do. But with the gifts they gave us over this year there is no way we could leave their family. They have given us hope, happiness, and knowledge. They have opened a door in Brian that some professionals would have us believe he didn't have.

Thank you to the Johnson Center and of course to the anonymous donor who made the Bright Eyes Grant available in the first place. You really have changed my little boy's life.

Teeny-Tiny Moments

2011-10-01T17:21:00.000-04:00

For some reason our pediatrician's fax machine does not like our pharmacist's fax machine.

Everytime we need something filled he faxes it over and we go to pick it up to find out that they never got his fax.

Today we went to try to pick up a new allergy medication that we are going to give a shot for Brian's chronic, going-on-five-weeks cough. Only to be told they hadn't recieved the script. This was actually the second time we had gone to pick it up to not find it there.

We left the pharmacy, left a message at the pediatricians and went home.

Not too soon after the nurse gave me a call apologizing profusely. She told me she had given up on the fax machine and had called it in and that we could go back out and pick it up.

Yeah. Okay.

Brian had just had a full day of school, gone to the pharmacy and to the grocery store. We were home and he was in his pajamas within two minutes of walking through the door. One could not expect me to get him to go back out in public without crying and public displays of tantrumming (PDTs).

Sometimes, it's those teeny-tiny moments, that make me realize how different our lives are. No, not the fact that I just listened to the same line in Aristocats 378 times in a row or that I have a crash pad and swing set up in my kitchen. Nope, just that nonchalant comment that I could just go back out in public, like it's the easiest thing in the world.

Unbelievably Smart

2011-09-27T07:37:00.000-04:00

I dug out the window crayons last night.

Brian works best with novel ideas.

He's not a sit at a desk kind of learner (like 90% of children).

Look at our art work.

Yes, that is my handwriting on Ratatouille and Dreamworks, but he told me how to spell them, letter by letter.

Then he wrote "MCR" on the bottom.

That's where his sitter does her figure skating and has brought Brian to once.

My child is not a phonological speller and may never be. But that kid has got memory skills like no one has realized. I know it. They haven't tapped into it yet and I'm determined to. That's how he is going to learn.

Furthermore, look at his trains. I have never seen him independently draw trains. The one on the right has a tiny "1" on it under the smokestack and he told me it was "Tommy". He then went and put a "5" on the other and said it was "James". He also wrote "T"s by both of them for "train".

He is so smart.

Unbelievably smart.

And I wish EVERYONE would see that.

Pronoun Confusion

2011-09-26T10:15:00.000-04:00

I try to be "real" on my blog.

And lately I think I have been real depressing.

However, you have to laugh about things.

Or else life just sucks.

And sometimes I wonder what I would laugh about if my kids didn't have their quirks.

Take for instance, Corbin's newest addition to his bedroom door:

Love it! Pronoun confusion and all!

I Won't Allow It.

2011-09-24T10:19:00.000-04:00

This was my son when he came home from school on Wednesday.

First of all, let's ignore the fact that he does not have self-injurious behaviors at home. And hasn't for a long time. That's not to say that in frustration he won't sometimes bang his head on the couch cushion- but I have not seen him hit his head on the floor in years.

The fact that I am NOT going to ignore is this happened when he was in a room with four other spectrummy kids. Him and one of those other boys require 1:1 support in all locations and times of the day. There were two ed techs in the room. And neither of them have worked with Brian one-on-one. And I still don't have a clear explanation of how it was handled when he threw himself into a tantrum.

The fact of the matter is I wrote the school on Monday- two days prior to this incident- with concerns about staffing and his LEGAL IEP not being met. And heard no response.

Needless to say Brian has not been back to school since Wednesday. And he will not go back until I am told his IEP is being met and I do not have to be concerned about his safety.

It's ridiculous that I am getting absolutely zero communication from the principal, the district's special education director, or our superintendent. It's crazy that I had to take the step to call Disability Rights of Maine. It's insane that I now have other parents of children in the program calling me with concerns. It's a huge red-flag that our special education teacher is resigning a month into the school year. Things are happening. There's going to be change.

It is what you have to do as a parent of a child on the spectrum. As a parent of a child who can't tell me what happens during his day. A child that is not going to be just swept through the school system. This parent won't allow it.

I Want to Take Care of Him.

2011-09-20T20:50:00.000-04:00

"Mom, when I'm grown up will I have to carry Brian to his bed sometimes since he'll be living with me?"

"Why do you think Brian will be living with you?"

"Because of his autism. If he still has it as a grown-up I want him to live with me so I can take care of him."

Stick a dagger through my heart.

"Corbin, I love that you love your brother like that but I want nothing more than for you to live your own life and fill your own dreams when you're a grown-up."

"Mom, that is what I want. Brian's autism makes him so much of a wonko (okay, though I was almost in tears that line made me want to giggle) that I'll worry about him. I want to take care of him!"

No matter how hard it is for Corbin to have a sibling with autism- and I'm not down-playing it- I know it's hard- he loves that brother of his so immensely. There's a bond there that is undeniably strong.

Corbin already supporting his "wonko" brother.

Wait For It....

2011-09-20T08:07:00.000-04:00

The day you all have been waiting for is here.

No, it's not Christmas.

No, skinnygirl margaritas are not on sale.

No, I haven't invented calorie-free chocolate.

Okay- I'll just tell you.

Wit and Wisdom from the Parents of Special Needs Kids has been released! (Say that title three times fast.)

And I'm honored to be one of those parents that wrote for it! Even more honored since the description says (and I quote):

Wit and Wisdom From The Parents of Special Needs Kids brings together dozens of the best writers in the blogosphere...

and it goes on to say a lot more. I'm just stoked that some one (thanks Lynn!) thinks I'm one of the best writers. Or at least they had to say that so they could sell some books.

But all kidding aside this is going to be one awesome book that you will want to have on your bookshelf! It'll be like having a friend that says "I get it" when you open it up and read it.

Want to buy it? I have a button over on the right side of my blog that is a direct link to it on Amazon.com. Enjoy!

Too much to ask?!??

2011-09-19T09:48:00.000-04:00

What is an IEP?

IEP: Short for Individualized Education Program, an IEP is the legal document that defines a child's special education program. An IEP includes the disability under which the child qualifies for Special Education Services, the services the team has determined the school will provide, his yearly goals and objectives and any accommodations that must be made to assist his learning. (copied & pasted from about.com)

See those words I made larger and bolder? LEGAL DOCUMENT.

I'm at my wits end once again and September isn't even over.

I've been sitting on this for a little bit because I wanted to talk to people. Get other side of the story. See what my rights are.

pretty accurate description of what i look like right now.

Last week I went in to observe my child on his lunch break to find him in the self-contained autism classroom with four of his peers and one teacher.

My child has ON HIS IEP one-on-one support for every minute he is at school. And I'm pretty sure that some of those other kids have the same.

These are kids that are prone to eloping, tantrums, and self-injurious behaviors. How is my child, and the other boys, safe in that environment with only one adult?

All because it was someone's bright idea to give the ed techs that are assigned to my son and other children like him "duties"- you know monitoring lunch, recesses, etc. And I know FOR A FACT that this has been asked about by parents AND teachers to have this changed because of safety concerns and it has NOT happened.

This ON TOP of already concerns about his educational goals being met. About the training the ed techs are getting on giving ABA instruction. This is after me going in two weeks ago to go over his program and ME having to explain to the person doing his instruction what the difference was between him knowing his sight words expressively and receptively.

If the person giving him his instruction didn't know the difference, how the heck am I suppose to put faith into the data she is taking? The data that shapes his programming and his IEP?

I feel like I have to be in school ALL the time to make sure things are going the way they are suppose to. It's like a full-time job. I can't do it. I have a full-time job already! I shouldn't have to do it. I should have a school and professionals that I can put my trust and faith in that my son receives the top-notch education he deserves. And that he's freaking safe in his school environment. Is that too much to ask?!?

This is our third year now in school and I keep trying to be optimistic that this time they've got it figured out. But they don't. I'm done. Done, done, done.

Worry.

2011-09-17T16:32:00.000-04:00

My nephew's birthday party was winding down and the kids had all gone inside my stepbrother's house while the adults soaked up probably one of the last warm days outside. I watched Brian follow the kids in and part of me wanted to go in with him but I resisted the urge. He was having a great day and it was just Corbin and their cousins- all whom are familiar with Brian. I wanted to let him go play and I wanted to relax.

Five minutes later I heard his screams coming from the upstairs bedroom. I ran into the house- you never know with his yells. He has the same scream for falling down a flight of stairs that he uses for not being able to close a door (because not being able to follow one of his OCD routines is, in my opinion, actually physically painful to him).

His scream of death was the product of not being able to watch a part in a movie over and over and over again.

I carried him downstairs while he kicked and yelled while all the kids followed me. They wanted to know why he was crying. I tried to explain the best I could about how he needs to have stuff done in certain ways. At that point Brian's screams were just escalating.

I carried him out of the house and tried to gather our stuff. My father came over and asked Brian if he could hold him. Brian went to him for two seconds until he jumped out of his arms back into mine screaming. My father walked us to the car, patting my back, telling me I need to take care of myself and that Brian is getting too heavy to carry.

I buckled Brian in the car. I did some deep breathing with him while giving joint compressions and he slowly started to come down. The screams had stopped and the tears were much slower. I turned to find my father still standing there.

The look in his eyes killed me.

I think he wanted to cry. I wouldn't say it was pity in his eyes, because that would've made me mad. But it was definitely worry in his eyes. He worries about me a lot. I know he does. He worries about how I will take care of Brian on my own as he continues to grow. He worries about the fact that when Brian gets upset like that the only way to calm him is for me to hold him in my arms. And he's already more than a third of my own weight. I can't do it for much longer. And how am I going to calm him when I can't? He worries about my future all the time. He's my Dad, that's what Dads do...but with autism in the mix, it's a whole other story.

My Dad is so unbelievably proud of me and what I've done with Brian thus far. And what I've done for myself while being a single mom. And he wants the best for me.

So he worries.

After I gave him a hug and drove off I started to cry.

I pretend I don't worry. However my father's look seemed to make a direct connection to these inner thoughts that I push down inside so I don't have to face them.

I cried because I worry too.

Anything You Can Do, I Can Do Better

2011-09-14T21:23:00.000-04:00

Corbin loves to brag about the things he does well. And sometimes he likes to brag about how much "better" he is at things than Brian. He can read better, he can add better, he can play sports better, etc., etc. Now, Corbin isn't a brat (most of the time)- it's just him making observations. It's his way of questioning me about autism and why Brian can't do those things.

I like to try to respond with things Brian can do better. And honestly sometimes I struggle.

However, this week we found out that Brian can rollerblade better than Corbin. Yup, you heard it here first. Brian just has that balance thing going for him- you can see it when he climbs across the top of the couch or up on the counters. Corbin...well that poor kid is awkward as hell.

Secondly, Brian is a WAY better hiker than Corbin. This past weekend we hiked Bald Mountain, which is the fifth highest point on the eastern coast. Brian loves hiking. He goes for it- there's a path and he is ready to follow it. He doesn't ever stop until he gets to the final destination (and if it's not marked well he'll keep on going). He doesn't tire.

Brian: "Don't stop, c'mon guys"

Corbin, with his low muscle tone, requires frequent rest breaks and complains the entire time.

Corbin on one of his many breaks.

So when Brian starts talking he can stick his tongue out at Corbin and say, "I'm better than you!"

My two boys that love each other VERY much, despite all this stuff I write about! :)

I Can't Fight It Every Time

2011-09-11T19:57:00.000-04:00

Brian takes the "Be Kind, Rewind"
slogan a bit too seriously.

Brian is the most obnoxious person to watch a movie with.

I'm not even talking about the fact that he can't sit still and will often run in front of the TV repeatedly while jumping, flapping, and squealing.

He's now decided that he has to watch sections of movies over and over and over and over again....

That one phrase he thinks is funny, the one time the character falls down, or when they sneeze- he'll watch it for five seconds, rewind, watch the five seconds over again....it's ridiculous really.

It drives me bonkers and I don't even stay in there to watch it. I usually allow him to do it while I'm doing chores or catching up on daily notes for work. However, as much as it drives me insane, multiple that by 100 for Corbin.

Friday morning I was rushing around as usual, still with a towel on my head, packing lunches, with only about ten minutes left to go before we should be out the door (should being the operative word). I hear Brian doing his thing on the television. We have a house rule that there are no electronics before school, yet I was pretending like I didn't know it was going on because I was running behind and frankly I didn't have time for a tantrum.

Enter Corbin. He starts covering the buttons on the VCR and pushing Brian away so Brian can't keep rewinding the part. I yell out from the kitchen, "Just let him be Corbin!". Corbin responds, "But I want to watch the movie without him stopping it!!" I reply, "Please!!! You can pick a movie after school. Just let him do it!"

Corbin stops, I run upstairs to run a brush through my hair. Next thing I know Brian is screaming like someone is putting burning daggers into his eyes. I fly down the stairs to find Corbin tackling Brian to the ground to keep him from pressing the buttons.

And I lose it.

I yell, with that scary-mommy-look in my eyes.

"CORBIN!! JUST LET HIM DO IT!!!"

Corbin is staring at me with his lip quivering, just about in tears.

I think I'm losing my mind. Okay, maybe not my mind, but my patience. I have been working full-time, not getting home until around 6 most evenings, doing all the chores and homework, getting the boys up and going in the morning...you know, typical working-single-mom stuff- but then throw in the autism. I don't want to have that fight anymore. I don't want to have to either fight a tantrum every minute or bend my own rules to avoid a tantrum.

I don't want Corbin to have to deal with crap because I'm too lazy and rushed and strung-out to face that autism head-on. But I can't do it. I can't do it every time. And sometimes I just need him to let his brother watch the same five seconds of a movie over and over and over and over again.

I'm sorry, Corbin. I really am.

I Hate Spelling.

2011-09-07T21:02:00.001-04:00

Wasn't it just a week or two ago I wrote an "I Hate Autism" post. Damn, I got some really negative vibes going on lately.

Corbin, you are not alone!

Anyhow, I don't really hate spelling. I kind of enjoy it and I think I'm alright at it (no, you do not need to point out any mistakes I've made previously). However, I do hate spelling for Corbin's sake.

Tonight was the first night we sat down to practice a spelling list. I say the words and he tries to spell them back to me. Should be easy enough? Wrong.

First of all, he doesn't hear the word I'm saying.

Me: "Stand."
Corbin: "Stamp?"
Me: "Sssttttaaaannnndddd"
Corbin: "Stan?"
Me: "SSSSSSSSSSSSSSSTTTTTTTTTTTAAAAAAAAAAAANNNNNNNNNNNNNNNDDDDDDD."
Corbin: "Supercalifragilisticexpialidocious?"
(Okay may have exaggerated with that last one just a bit)

Once he does understand what word I'm saying, if he does at all, he'll then try to spell the word. However, he still isn't consistent with knowing what sounds certain letters make- ESPECIALLY vowels. Then if by some miracle he has figured out all of the letters, you better believe his dyslexia will get in there and transpose at least two of them.

Tonight after some drilling he just threw himself on my bed and exclaimed, "I don't get why this is so hard for me! I can't even seem to hear what it is you are saying!"

I answered back completely nonchalantly, "Well kid throw in some phonological awareness issues, auditory processing deficits, dyslexia, articulation delays, and poor memory skills...it's no wonder it's a challenge."

He looked up at me with a smile and responded "I have no idea what any of that means but okay, guess I just have to work harder."

Seriously, I am so much in love with this kid. So many struggles (this doesn't even get into bilateral coordination, muscle tone, sensory issues, possible facial agnosia, and reflex integration) and he just keeps trucking through it all while smiling and making jokes. Love him.

Autism is Not the Wingman I Envisioned

2011-09-07T11:55:00.000-04:00

Recently I decided to stop having my blog automatically syndicated to my own personal facebook page. I made a little announcement so people would know they had to either "like" the page or connect via blogger to keep up with it.

For the most part, I think people didn't care or notice. However I did have a few inquiries on why I wasn't going to post them anymore.

Turns out you can share TMI online. Who knew?

My answer?

I'm dating.

Yup, I'm dating.

In 2011 when you date, right after a guy asks for your digits, he'll ask if you have a facebook. I'm cool with that. Until I started to realize these guys that I had newly become "friends" with were now seeing my blog posts go up every day. They were seeing it all: autism, bowel movements, tantrums, special diets, supplements, money, my tears, my joys, my fears, my cursing. It's too much to share with someone that you're just getting to know!

Yes, I realize they can probably just google our names and find my blog but in my pretend world I'll pretend they won't do that. Yes, if any of those friends turn into something more serious they're going to have to learn about autism and all the wonderful things that go along with it. And all of the not-so-wonderful things too. And it will be the real test on if they are even relationship-material. But for now, I'd like to have the chance to scare them away with my own quirks before I add autism into the mix.

Obsessive Compulsive

2011-09-06T12:31:00.001-04:00

Brian lives here and he has OCD (on top of many other things).

Here are a few tell-tale signs that he rules this home.

DVDs can not stay in the player when the TV is turned off.
However, they also can't go back into their cases.

Open doors? Not around here. Ever.

If one switch is on, the other must be too. They have to be in the same direction.
This one drives me nuts. I have auditory defensiveness issues and hate having the bathroom
fan on. Yet, he'll barge in whenever I'm using the bathroom to make sure the switches are lined up.

For some reason he doesn't like any of his bureau drawers to have knobs on them.

Just a taste of Brian's quirks.

That's What I Needed

2011-09-01T09:20:00.000-04:00

I had a chance to stay for an extra twenty minutes or so after dropping the boys off to school this morning.

I watched Brian on the playground for a little bit. He likes to sequester himself to the corner of the playground where he leans against the fence and glues his eyes to a distant street across from the road. Why? Because there are train tracks on that road and there's always a very slim possibility he might get to see a train.

What caught my eye was two little girls in pink came over and stood next to him and were trying to converse with him. He wasn't answering but they didn't give up and they ended up staying there next to him until the bell rang.

I sneaked inside and took the time to track down his special education teacher to see how the last two days have gone. She's still getting to know Brian but she's definitely on top of things. I like that she seems to be getting a good handle on his skills and is already thinking of ways to push him.

After I let her go so she could see to the rest of her students I decided to go see if I could peek into his regular ed room where he starts his mornings off at. I wanted to be conspicuous but I really wanted to see how he was adjusting to first grade after two years of kindergarten.

There was my little boy sitting at his table with five peers. They each had their book boxes in front of them and they were all reading. All of the other tables were doing the same thing. There was barely any noise. Brian wasn't looking around or flapping- he was sitting there reading his book to his one-on-one. If she wasn't sitting next to him, there is no way you would've picked him out of the crowd.

Wow, I'm so glad I got to witness those five minutes. I just feel like it released so much of my tension and anxiety. That's my boy. My brilliant, sweet, full-of-potential little boy.

Not a picture from today. But cute nonetheless.

I Wish I Didn't Care.

2011-08-31T17:00:00.000-04:00

Last night I was exhausted.

Yet, I was sitting on my bed with both of my boys' binders open in front of me. You know those binders? The ones that you keep all of the IEPs, evaluations, medical records, etc. in? The boys actually have several binders each.

I wanted to sleep more than anything but instead I was pouring myself into their IEPs....because yesterday was their first day of school. And everything didn't go as planned. And I'm tired of being so unsure and apprehensive about their school placement every single year.

I sat there and the thought crossed my mind..."I wish I didn't care". Sometimes, I really wish I didn't. Do you know how much easier life would be? Yet, do you know how much crappier my kids' lives would be?

Well besides some problems with Brian's placement (it seemed as if they wanted to exclude him a bit more than I had planned, but it's fixed) and Corbin's utter dislike for his new classroom.....I guess it was a good day. Well at least they looked good doing it, right?

Hurricane Irene Meets Brian

2011-08-29T08:21:00.000-04:00

Hurricane Irene knocked out our power for about three hours yesterday. Really the only damage done.

Not that big of a deal....unless you have autism.

Brian was running all around the house, trying every switch, every electronic. Each try met with a bellowing "OH NO!!!! BROKE!!!!" This went on for about the first hour until he finally gave up.

And try explaining to him not to flush the toilet after using it. Yeah, that goes over REAL well with the OCD tendencies he has in the bathroom.

Thank you Central Maine Power for getting our power on before it got too dark. Not sure what he would've done if he couldn't do the mandatory light flicking of the hallway before bedtime.

Secret Super Powers

2011-08-25T09:14:00.001-04:00

I realized something the other day.

I make professionals working with Brian like me. I don't know if they realize I'm doing it, but I seriously force them to become my best friend.

I'm not sure how I do it, maybe it's my secret super-power. I always wished I could fly or be invisible, but I could settle for this.

I did it to my boys' SLP and OT. Hence, why I had a job secured before I even graduated. Hence, why I got our SLP to collaborate with the school SLP.

I did it to Corbin's first teacher. Which is why when she knew Brian and I were coming to a classroom event she always made sure to provide allergen-free snacks.

I did it to Brian's first teacher. It helped that her and her husband had been friends of my father's for a while too. That was why she met with him several times during the summer prior to his second year. It's why she came on her own time to his horse show. It's why she had tears in her eyes when we finished up the year with her last year.

I did it to our special education teacher last year. We are now seriously best friends. We hang out all the time, call each other to complain about everything from men to NCLB, and I love her to pieces.

People like me and then Brian gets the services he needs.

Okay, now that I'm done trying to pretend it's me...

It's really this boy I have. You can't help but love him, squeeze him, kiss those cheeks. He is so unbelievably charming for a child that doesn't speak. I have not met a professional that has not fallen in love with him. Our new special education teacher has already been warned that she won't be able to help but fall in love with him.

He is so lovable. And it's such a gift for him.

Well maybe he did get it from me (insert winky face).

Wasn't All Bad.

2011-08-24T18:53:00.000-04:00

So on top of our trip to Funtown Splashtown, we also went camping. I know. I shouldn't even complain about any tantrums, right? I just threw every single routine we had out of the window for three days....it was like I was asking for him to have a meltdown. And then of course add in that the kid refuses to have a bowel movement away from home. No wonder by the time we were in Funtown he was miserable.

However, now that I've had a few days to think it over. I think it was a somewhat successful family weekend.

Low Points:

FOUR AM. NO JOKE.

Thought we lost Brian a couple times. Mix him having an excellent sense of direction and a distaste for communicating and we found him just going to the restrooms by himself without telling anyone on several occasions.
The first night we camped out, he woke up at 4 am. Him and I actually climbed into the minivan and watched movies on the iPad as to not wake up the entire campground.
I finally released him from said minivan at 6:20 am....only about five minutes later we had one of our "neighbors" screaming "STOP!!!" from her camper. He's loud in the morning.
We're pretty sure he peed sometime during the night. Sleeping bag was dry, pajamas were dry, but there was a definite scent of urine. Still trying to figure that one out.
The campground deciding that the outside family-movie was going to be "The Little Fockers." We thought it was going to be The Last Airbender. When the movie started Corbin looked at me and said, "Am I suppose to be watching this?"

High Points:

The neighbor that we pissed off? Well her and her boyfriend and friends were up drinking and being loud until midnight or so the night before. So really that above bullet up there...not even a low point. I find it HILARIOUS that we woke her up the next morning.
Building a fire. He really got into helping out and he was able to behave really safely around the campfire.
Hanging out at the beach on Saturday. Brian LOVED the waves. It was a great morning.
Sumo-wrestling with Corbin.
Sneaking away with my sisters to celebrate my little sister turning 21. Having such a great Mom that she stayed at the campground with all three of her grandchildren so we could go act as if we didn't have any responsibilities.
Smores!!

Bwahahahaha.

2011-08-23T08:51:00.000-04:00

Does it make me an evil mother that I can not stop laughing at my kids' expression on these rides?

I seriously didn't force them to go on them.

Brian even asked to go on the log flume again and again.

My stomach is seriously hurting from laughing so hard.

I hate autism.

2011-08-22T16:24:00.000-04:00

"I hate autism. I effin' hate it."

I said these words to my sister as I watched my son play in the kiddie pool at Funtown Splashtown.

He's seven years old and he was sequestered to the kiddie pool with all of the toddlers.

We tried to play in the Pirates Paradise. A play structure with squirt guns, slides, rope ladders, a pirate head that dumps 500 gallons of water every two minutes ....every kids dream. It really was Brian's dream too. It would've been perfect....if he was the only kid playing on it.

He loved it. Loved it so much that he couldn't wait in line or share it. I followed him through the structure as he flapped and laughed. I grabbed his hand when he started to shove. I had to pick him up as he kicked and screamed. I had to chase him down as he ran in the "no running" zone. I witnessed three adults try to hold him back from cutting in line after he had got away from me.

I could not handle it anymore. Maybe it was the fact that I had only got 8 hours of sleep in the last 48 hours...but I did not have the patience to continue to pick him up, have him kick, have people stare, have him yell. I couldn't do it.

I carried him, while he screamed at the top of his lungs, and put him in the kiddie pool.

It took a little while but he stopped crying and he did enjoy himself in the pool. But that's all we could do. He could not go to any attraction that required waiting in a line and taking turns.

Poor Corbin had to go play in the big-kid pool by himself. Then he went on some slides by himself. Having a sibling with a disability really makes one grow up fast. Later I was able to accompany him on a few rides as my sister was able to watch Brian in the kiddie pool.

I finally understood why some families will take their other kids on vacation without their ASD child. Horrible to say, right? And I really hate the thought of it, because I don't want to alienate Brian. I just want to alienate his autism. I want to kick it in the ass and make it leave our lives.

Someone told me it gets better. Really? Because I took Brian there two years ago and he did better at that point then he did yesterday. Maybe it was a bad day. Maybe it was because we had been camping and his routine had been off. Who knows? All I know is that if he didn't have autism, we wouldn't have had those issues.

Yup, I hate autism. End of story.

Corbinisms: Drama

2011-08-18T15:00:00.000-04:00

There is a reason one of Corbin's earliest nicknames was DK (Drama King).

Corbin: "Mom, I've been noticing something a lot. Everything is made in China. Everything I tell you!"

Corbin: "I curse you!!" {Said all the time. When he realizes only grape popsicles are left. When it's Brian's turn to pick a movie. When it's time to brush his teeth. When he realizes it's been a minute since he said it last.}

Corbin: "I'm pretty much a man now, Mom." {Because when we were out to eat he ordered his own dinner and then asked for a glass of water when he finished his lemonade.}

Corbin: "You did it Mom! You are now the best OT in the world! It's like a dream it's so great! I can't even believe you are my Mom! You are so awesome Mom!!" {Yelled, while jumping up and down, after he heard I passed my boards.}

Adventures with Fairies and Thomas

2011-08-18T06:50:00.000-04:00

A couple of weeks ago (and yes I'm just posting about it now) my sister and I decided to take our kids to a fairy festival at the Coastal Maine Botanical Gardens.

Was really looking forward to a chill day in an awesome environment.

What kind of horrible luck do I have to drive right past the annual Day Out With Thomas event that is held not too far from the botanical gardens?

I swear it was just a distant image when Brian starts hand flapping in the back. The hand flapping intensifies as we get closer. And then the howling begins as we drive right on by.

I'm looking at my sister with major trepidation in my eyes. I'm not sure if she realizes the seriousness of the situation. If she knows that my boy will not, absolutely will not, get over this.

She gets it though. She tells me to call to see when the last ride is.

We placate Brian by telling him "First fairies. Then Thomas." We repeat it as a mantra as his sobs become less and less.

It seems like he gets it as we park and walk towards the festival. But as soon as we are inside the gardens he just starts screaming again.

At this point I'm holding him. It's the easiest way to really quiet him, yet I know we must look ridiculous. My seven-year-old is really getting too big to be carried. I'm kind of petite and his feet now hang pass my knees when I carry him around.

Oh rocks with built-in sprinklers. How I love thee.

He cried in the bathrooms. He cried through the parade. He cried while we walked. And then, by the grace of the Goddess, there were spraying rocks at the entrance of the children's gardens. They were our savior, because they snapped him out of his funk.

We enjoyed our time at the gardens, though we did have to rush it more than we wanted, to make sure we made the last ride offered at the railways.

Though Brian did end up having fun, there was nothing like the smile on his face when we said, "Okay, all done fairies. Time for Thomas."

When we arrived back at the railways he was so ecstatic he couldn't hold it in. Seriously, he couldn't: hand flaps and happy squeals abounded.

The event had a movie screening area, story time, a bounce house, a hay maze, a tiny tractor/"train" ride, temporary tattoos station, a railway museum, and a tent to play with toy trains. All Brian wanted to do was play with the trains. The trains that we have in an abundance right here at home. I watched him closely as he tried to dictate the train table.

"Excuse me. Clarabel does not come after Annie. Annie always goes first. Everyone knows that."

"You can't have two engines attached to each other! You can put one at the end of the train to help it up the hill if you want."

"Colors people! Look at the colors!! You don't put a red tender with a yellow engine! Amateurs!!"

Of course he wasn't saying these things, but it was implied.

He started screaming when I took him away from the toys so we could ride on the real thing.

I love how Brian refers to Thomas as "Tommy".
They go way back.

He calmed down when he saw the life-size Thomas and thoroughly enjoyed the ride.

Yet, after the ride it was right back to the toys.

When we left not only was he screaming at the top of his lungs but my four-year-old neice decided she didn't want to be outdone and joined in. We made quite the grand exit....we heard the comment, "Well you look like a happy bunch."

All I could do at that point was laugh. Because I was exhausted, hot, and sweaty and was really ready to scream right along with the two of them.

Magical day? I don't really know about that. More like magical moments. But we tried.

Want to see more? Check out our album.

Homonym Confusion

2011-08-10T12:42:00.000-04:00

As usual Brian was screaming and crying while getting dressed.

It's the source of most of his tantrums lately: transitioning out of the house. And that stems from the fact that he needs to change out of his pajamas or underwear, whichever one he has decided to don.

He needed help, but he was refusing to ask, so I was waiting him out. My own anxiety level climbing, as we had an appointment to make, so I'm sure it was feeding into his escalating crying.

Finally he realized I wasn't backing down and he asked, "Help?". I started to pull on his shorts to realize they were too small for him. He started to whimper again as I pulled the shorts off over his feet, because of course now, we were backtracking.

I threw the shorts onto the table and said, "Those are too small. Can you go get another pair?".

He cried a few more tears and looked at me with a look of confusion.

He walked over to the fruit bowl, grabbed a pear, held it up to me and said "Pear!". He smiled and happily took a bite.

I let him enjoy his pear while I went and got him another pair of shorts.

A Break in the Clouds

2011-08-09T16:46:00.000-04:00

In the midst of clouds, the appearance of the sun, no matter how brief, is so treasured, isn't it?

That's me being metaphorical.

Today Brian and I were hanging outside the clinic while Corbin was in speech. We've had a lot of trouble with transitions, tantrums, and behaviors lately.

Yet outside, he was happy.

He was sitting on a rock and he started waving his fingers in front of him. It wasn't the typical flapping that I see, but it seemed to have a real purpose. I asked him if he was playing the piano, as that is what it looked like. He looked at me and smiled and said, "No, 'puter". Oh you are playing the computer!!

He laughed and smiled when I understood what he was doing. I always think it is so amazing when I'm able to converse to him, but imagine what it must feel like to him when someone understands him!

A few seconds later he started to pretend to eat something out of thin air. I asked him what he was eating. He responded, "Chips!". I asked if I could have some and he fed me some invisible chips.

Un-freakin'-believable!

He then spied some blackberry bushes. He started picking them and eating them. Amazing in it's own as he has never ate them before when I have offered them to him.

While picking the berries he scratched himself on the bushes. He held his hand up to me and asked, "Are you okay?". I replied, "I'm okay. Are you okay?". He pointed to his hand and said, "Look! Abadabadaba boo-boo!". I kissed the scratches and asked again, "Are you okay?". He replied, "Are you okay? See! Boo-boo!".

All of this- pretend play, smiles, reciprocal conversation, eating new foods- in the span of about twenty minutes.

We're home now and he's already had three crying spells for reasons unbeknownst to me, but I'm still flying high on those twenty minutes. I love those glimpses of what my boy's true abilities are.

Another Year Older

2011-08-08T07:22:00.000-04:00

Every year at my birthday I write a post about myself.

Two years ago I wrote about the materialistic things in my life that kept me happy.

Last year I may have tooted my own horn a little bit.

This year I just want to say, "I have no clue what I'm doing."

Honestly, every year I get a year older. I should get a year closer to knowing where the heck my life is going, right? I should have some kind of clue.

This past year has been wonderful. I graduated and started my new career, which you know unless you were hiding under a rock, because I put it out there a lot (it's the Leo in me). What you may not know because I've never addressed it on here, is that I also became single again. I think that's what is putting me into this mode of discovering what it is I want out of life. And wondering if I'll ever meet "the one", settle down, have 1.5 children (oh wait, I screwed that one over already), and a white picket fence.

Yet, looking and questioning what my future will be would only hinder me from seeing the beauty that is now. The beauty that is my present. Beauty like this:

"Yesterday is history. Tomorrow is a mystery. And today?

Today is a gift.

That's why we call it the present."

~Babatunde Olatunji

Back to School Prep Work

2011-08-07T07:37:00.000-04:00

August is here.

That means it's time to start squeaking that wheel as the school year quickly approaches.

Don't you ever wish you could just sit back and only worry about finding the perfect sneakers for your son to start school with? Not that that isn't an issue, as anyone who knows about the Buzz Lightyear shoes would know.

However, more pressing is contacting individuals in the school system while they are on vacation. Hounding them is more like it. To make sure your child can get into the school and visit with his new teachers, new classrooms, and new supporting staff prior to the school year starting. To make sure that they have an acceptable program set up and in place for your child. To remind them they need to provide new testing before November so I hope they are already scheduling it. To make sure the new dedicated autism program that they promised is really going to happen and it's really going to UNDERSTAND autism and your child. To make sure his backjack chair, visual schedule, and fidget toys are all ready in his new classroom.

Then on top of that I have the list I need to do- new social story about 1st grade, updating his communication journal (his version of PECS but we call it a communication journal), updating the "Unlocking the Puzzle of Brian" book I give the school each year, making a new communication journal for the teacher & I to write back and forth in...on top of the school shopping I have to do for both boys.

Ahhh, the joys of school. Wish it was as simple as buying sneakers and notebooks.

Tree-Hugger

2011-08-02T17:40:00.000-04:00

A trip to the park.

As told in pictures and as few words as possible.

Brian insisted on being spun on the merry-go-round over and over and over again. And yes, the thumb still stays in even for that.

He then decided we should follow him on an adventure over the bridge.

We hadn't been to this particular park in over a year.

And though there are many trails he seemed to remember the one that he wanted.

He led us right to his favorite spot, where we decided to dip our toes.

He loves this spot because there is a current that goes over a little bit of a rapid just down the river.

He throws in sticks and watches them go.

On the walk back he decided he wanted to be a treehugger.

Literally.

The End.

Deal With It

2011-07-30T08:05:00.000-04:00

The boys left again for their second one-week stay at their fathers.

I always feel a bit depressed when they leave but I try to focus on what I can do when they are gone. I can focus on myself and get myself back into a better place. I can sleep. I can go to the gym whenever I want. I can go out with friends. I can study (yuck- boards on the 4th though). I can recharge my battery.

So last night it was nice to be invited to a lobster dinner at my friend Amy's home. A relaxing evening of lobsters, wine, and good people.

Until my phone rings.

And it's my ex.

And he knows I had dinner plans this evening.

"Do you know Brian is still doing the shitting thing?"

What "shitting thing"? Do you mean he still needs help in the bathroom when he has a bowel movement? Do you think I don't realize how anxiety-inducing the whole BM thing is for him? Considering I have him the majority of the time, I hope I realize what his needs in the bathroom are..but do please, inform me.

"He just made a mess everywhere!"

Story of my life. Do you see me calling you every single time I have an incident that requires clean-up? Do you see me calling you every time he tantrums in a store and I have to leave my cart there? Do I call you up when I can't even leave the house because every time we leave he just screams and cry?

I don't know what my ex wants of me when he makes these type of calls. And he does it often. Does he want me to swim the fifteen miles out to the island where he lives and clean the mess for him? Because that sure as hell isn't happening. I don't have help cleaning up the mess when it happens here. If he wants to have this time with him, like I know he does, he has to accept the bad with the great that is our son.

"Well what can we do to make him stop doing this?"

Find that magic pill everyone is searching for so he doesn't have autism anymore, I guess. I mean other than the fifty million times I've told you to be consistent, stay in the bathroom with him, use positive reinforcement, and don't feed him crap that makes him shit all over the place. Other than those pieces of advice (that you continually refuse to use), I've got nothing.

And that's all. Let me enjoy my evening please.

*Disclaimer: Yes, those are his exact words in the italics. No, I don't talk like this back to my ex. This is how I want to talk back to him. And I'm sure someone will send this along to him and he'll call me today to yell at me about it. That's when you wish you were more anonymous on your blog.*

Reading Interventions

2011-07-27T20:45:00.001-04:00

I'm not sure if I've mentioned it before or not but I love the fact that one of my dear friends is a special education teacher. Though she has the summer off from kids she is busy taking a lot of courses for her continuing education credits. One of the courses she is taking is on reading interventions for children with moderate-to-severe disabilities.

One of her assignments was to video herself giving a lesson to a child. She asked me if she could use Brian and then continued to thank me profusely. Hey, don't thank me! We got free intervention out of the deal! I was super excited!

This video is longer than those that I typically post on the blog. Yet, I wanted to share it for many reasons.

One- maybe it will give other parents ideas of how to approach the literacy piece with their children.

Two- I love sharing what Brian can do.

Three- I love to show what autism really is.

If you don't have fifteen minutes to watch, I've listed the highlights under the video.

1:13: Brian is suppose to be saying the sounds each letter makes. Yet, when the "Z" card comes out all he will say is "zebra". I find it cute. Maybe, it's just because I love him so much.

2:55: When the song comes on the computer you see Brian hide under the table and then hide his eyes. He does this a lot with favorite parts in movies too. It's like it's going to excite him too much so he needs to filter it.

5:24: I swear he says "Look at that. Oh geesh."

6:17: Brian accidently uses a "U" instead of a "Y" in "my" and Amy doesn't catch it and says "Good job"- he then exchanges it so it's right and does this laugh like, "Oh you silly adult, you don't even know how to spell 'my'".

7:28-10:49: Just skip right through this part, if you want. It's pretty much dead air as we try to get starfall.com to load!!

12:16: A teeny glimpse of a tantrum- thankfully not a full-blown one.

12:25: After he's done with his tantrum he starts to growl. Yes, growl. That was a new one.

12:33: Finished growling and you can see him look at me (I'm filming) and smile. He thinks he's pretty funny.

How I'm Like An Elephant

2011-07-26T17:01:00.000-04:00

The other day Corbin told me I reminded him of an elephant.

I see the resemblance.

Yup, an elephant.

Kid knows how to play dirty.

After I cried some tears (not really, I promise I held them back) and explained to him that most women don't want to be called an elephant he explained his reasoning.

"Mom, I just mean you are faithful. Elephants are faithful 100%- they say what they mean and mean what they say. And you always do that! If you say it- you mean it! I like that about you!"

Okay, that kid knows how to win over hearts. And is obviously a big fan of the Horton books by Dr. Seuss.

The Terrible Three Stage at Seven

2011-07-24T14:24:00.000-04:00

By now everyone knows that Brian has had a hard couple of days.

Public temper tantrums.

Throwing items when he's mad.

Destroying Corbin's lego city.

Erasing data on Corbin's DSi.

Coloring on walls.

The last big screening Brian had done he came out about an 18 to 24 month old level developmentally.

My explanation for the new behavior is there has been growth. I remember Corbin at three. I remember always saying, "Why the hell is it called Terrible Twos? Three's are SOOOOO much worse!" So that's it.....developmentally Brian is now three. So there...how's that for a positive spin on a hard couple of days with new negative behaviors?

He never drew on walls like most preschoolers...now he is! Yay! And look at those ABCs and 123s!!

Hey, just go along with me here...I like this theory and it makes for a happier mom, hence a happier home.

Autism: Not As Glamorous As You May Think

2011-07-22T14:53:00.000-04:00

I sprained my foot the other day. Don't even have a cool story to go with it. Needless to say, I am on orders to take it easy. The doctor even suggested crutches for a couple days. Like that's gonna happen.

Unfortunately, being a single mom, if I need something at the store I have to go to the store. Today I had to go to two stores. I laid out the plan to Brian like I do every time we go out. There were no surprises.

In Wal-Mart I picked up the cleaning supplies and toiletries I needed and even threw in some nice window markers for the boys. We did a toy aisle sweep-through, like we do EVERY time we go. Brian actually does really well with it and it's one area that we have seen great improvements in.

Today, he spotted the Harry Potter Lego train set. Yeah, much like the Toy Story Lego train set from the other day. We looked at it, we talked about it, and then I said, "Okay, bye train." The same line we use every time we leave the train aisle. The same line that he always repeats and then walks off calmly. Yeah, not today.

Cue tantrum. Screaming and crying at full throttle. I tried to ignore him and kept walking. He turned around, ran back to the boxed train set and hit it with his hand and yelled some more. I picked him up and put him into the cart. I quickly navigated towards the checkout, blocking out the ensuing screaming and staring glances from neighbors.

All while hobbling.

Once in the car he seemed to be okay but as soon as I pulled into the grocery store parking lot he just starts screaming again. I need groceries. I also need to not chase after a bolting boy which is exactly what this kid is going to do in this frame of mind.

So I leave. I don't even attempt it. I'm at the end of my rope. And no not just from this one incident but because yesterday this was his behavior all day long too. And he's not sleeping again. And when we got home he decided to throw a DVD case against the wall when I told him he wasn't watching a movie. And it's reaching 100 degrees on the coast of Maine (unheard of). And I know he can't handle the heat. And I can't bring them to the beach to cool off because I'm suppose to be resting my foot.

Now imagine me doing all that while trying to figure out crutches. I'm not that graceful. It's why I have this sprained foot in the first place.

Word Retrieval with Corbin

2011-07-21T20:15:00.000-04:00

Corbin: "Mom, you know that person that supposedly made all the animals?"

Me: "Umm....God?" (fingers crossed this isn't going to be a religious type of conversation)

Corbin: "No...it starts with an "M"."

Me: "Moses?" (spitting out the first biblical name I could think of)

Corbin: "No, Mom. It's like Mama something or other."

awkward silence

Me: "Oh! Do you mean Mother Nature?" (trying hard not to laugh)

Corbin: "Yes! That's it! Oh...I don't remember what I was gonna say."

Corbin: The Autism Whisperer

2011-07-20T21:37:00.000-04:00

The Autism-Whisperer

Sometimes when I can't get Brian to answer me or even acknowledge that I exist I'll absentmindedly mutter something along the lines of, "I guess you're in your own world today."

Corbin heard me say this under my breath the other day and answered, "Yes Mom. He is in his own world. He likes to go there because he is King of that world. He likes being King and he doesn't have to figure everything out in that world. He already knows it all. Nothing is confusing there."

Corbin had said something along these lines before as I mentioned in a post in 2010 but at that time he wasn't able to elaborate on what he meant.

I get it now and I really like thinking of it that way. Honestly, it makes perfect sense to me when he put it into those terms. If I were Brian and the world was so overwhelming and confusing I would want to go where it was more calming too. I think Corbin is on to something....

Our One Way Ticket to the Cool Club

2011-07-19T17:57:00.000-04:00

Have you seen this: The Autism Generation.? I saw someone link to it on facebook and then jillsmo wrote a fantastically snarky post about it. Haven't read it? Well let me just copy & paste the one line that is having a lot of parents in an uproar.

The most likely cause of the autism epidemic is that autism has become fashionable – a popular fad diagnosis.

Fashionable? Give me an effin' break.

Brian's stimming, flapping, screaming, not-talking, tapping, OCDness, night wakings, bolting, and everything else that goes with it is definitely starting a fad around here. He's got kids lining up to ask him for playdates. Other parents can't stop asking me how to get their kids to be so freakin' fashionable. Kids want to be like him and parents wish they could have my anxiety level and dark under-eye circles.

This just deserves a good old fashioned eye roll....

Did We Just Become Best Friends?

2011-07-12T14:12:00.000-04:00

You know how they say a way to a man's heart is through his stomach? Do you know how archaic I find that?

Well, that's beside the point.

Let me tell you, the easiest way to make me fall in love with you.

We saw our new speech therapist last week for the first time.

Our regular therapist is gone on a summer RV-trip with her family.

This woman played with Brian and had him saying all kinds of words.

I was appreciative of how quickly she seemed to make a relationship with Brian.

But it wasn't that, that made me fall in love with her.

It was as we were getting ready to leave and she said to me...

"Heather, I know I just met him. Yet, I have to be perfectly honest. I don't see an MR piece at all."

At that point I grovelled at her feet and told her how much I loved her.

Seriously, she's not the first professional to say it. However, it never gets old to hear.

I know my son and I believe what I believe about him but it's always nice to hear it confirmed from others.

YUP!!

All For You

2011-07-09T16:11:00.000-04:00

I sat in the movie theater staring at my little boy with his eyes glued to every move of Tow Mater's.

I looked around and saw the families scattered around the movie theater- I saw familiar hand flaps, I saw Mom's arms around their child, I saw headphones, chewies, and fidget toys.

It was perfect.

I thought about how far I've come in my life.

I set up our first local sensory-friendly movie. Who would've thought five years ago that I would be doing things like this?

Life is hard with autism. I'm not going to sugar-coat it. Yet on the positive side, I have grown so much as a person by having Brian and autism in my life. I have become more compassionate, responsible, and mature. He really has shaped me into a better person, as corny as it sounds.

It made me so proud and so happy to hear other parents tell me it was their child's FIRST movie experience. It warmed my heart to see kids sitting through an entire movie (including MINE!) because of the changes I asked the movie theater to make for our private screening.

I looked around the room and thought, "This is for all of you. Even though it's just a two-hour movie. Just two hours of your life. I hope I gave you an experience that you couldn't have had otherwise."

I looked back at my little boy and thought to myself, "This is all for you. I would give you the world if I could."

A simple morning at the movie theater....life couldn't get much better than that.

Fireworks: Friend or Foe?

2011-07-06T10:00:00.000-04:00

Fireworks? Every autistic child's worst nightmare?

Apparently not.

And I'm serious in saying we were standing right underneath where they were setting them off.

Couldn't have picked a louder spot.

This kid just laughed, flapped, yelled, and smiled the entire time.

This kid, on the other hand, started off enjoying them.

Then quickly dug out the headphones.

And told me that the fireworks were giving him a headache and were probably going to make him go blind.

How Many Wheels are in a Parade?

2011-07-05T13:42:00.000-04:00

Another holiday come and gone.

We celebrated the fourth by attending our local parade.

We were ready with noise-cancelling headphones in hand.

Surprisingly Brian didn't require them once.

In fact if he could speak to me functionally and in sentences I am pretty sure he would've said, "I've said no to the headphones ten times already lady. Leave me alone!"

I marveled over his growth in being able to handle auditory input and measured the success of the parade in hand flaps. There were a lot.

Hand Flap #1

Umm hello? Train? Responsible for Hand Flaps 28-97

I then realized hand flaps were in direct correlation to wheels. And there are an awful lot of wheels in a parade if you've ever noticed.

Happy Fourth of July!

So really, now that we seem to not have auditory difficulties (haha, I know my boy and his cycles- tomorrow the sound of the blender will send him over the edge), a parade seems to be the perfect source of entertainment for Brian.

I Need to Brag.

2011-07-01T17:31:00.000-04:00

Corbin and I were working on a mural. We decided to do a jungle theme. I drew a "jungle man" as Corbin called him. Brian was just doing his own thing (running around in aimless circles) during our arts & crafts time. I then made the little gorilla from the Disney Tarzan movie.

Then all of a sudden Brian stopped. Picked up a red colored pencil. And..

TARZAN

Can I just say the first words to cross my mind were, "HOLY SHIT!!".

Effin' genius!

Problem-Solving Skills

2011-07-01T16:10:00.000-04:00

Today we went to visit our favorite toy store. They had been closed for most of the winter and spring for renovations.

I told Brian where we were going and he just lit up. He hopped out of the van faster than I've ever seen when we arrived in the parking lot. He skipped all the way in. He let go of my hand and ran into the store.

He stopped dead in his tracks.

"Oh noooo. Trains! Broke!"

Yes, the beloved train table was gone. Yes, the beloved electric model train in the window was gone. Yes, I had one disappointed boy on my hands.

He seemed to get over it quickly but I watched him as he started to scan every single shelf looking for trains. Finally his eyes found the Toy Story 3 Lego train set. He has the Duplo model of it with the bigger blocks but he really has no interest of putting regular sized Lego pieces together. Yet his heart was set on this train.

I had told the boys they could each pick a toy going in. It's easy to explain to Corbin about a certain price range he needs to stay in. Brian, on the other hand, could not for the life of him really get why I wasn't going to buy him a Lego set that was priced at $105.00.

So the crying started.

I turned him down over and over again sternly.

Corbin showed him some metal trains and he grabbed one but not happily.

We checked out and were starting to leave when Brian just threw his hands up in the air and yelled, "OHH NOOO!". Here we go. I thought we would leave without too much of a show. Before I could grab him he was running back to the shelf with the Lego train set. As I'm racing after him I watch him grab two other toys and put them in front of the box to hide the train set.

He steps back to look. To see if other potential buyers will be able to find his treasure that he has hidden. He seems satisfied as he sighs, turns around, and walks to the door with his new train in his hand.

He just baffles me everyday with problem-solving skills that I'm not always sure he has.

However, I am scared to bring him back in there again. I hate to see what happens when he realizes he didn't hide it well enough and someone has bought it.

He Didn't Strip in Applebees: Progress!

2011-06-30T15:10:00.000-04:00

Wednesdays are my long day at work. I work between 9 1/2 to 10 hours. The last thing I want to do when I get home is make dinner.

So last night I took the boys out to Applebees.

Everything was going fairly well. When all of a sudden Brian stands up in the booth and says quietly, "Ohno, ohno, ohno, ohno. Imma imma imma wet!" I look down and there is a tiny spot of liquid on his shorts. He didn't spill anything, just the condensation on the outside of his cup had rubbed against the fabric.

Trying to use my calmest voice I reassure him, "Oh it is a little wet. It's fine though Brian." Inside my head I'm thinking, "Once again I didn't pack extra clothes. The kid is going to strip and I'm going to have to take off my cardigan and figure out how to make shorts with it." (True story, actually it's happened quite a few times.)

Brian's voice becomes a bit louder, "Imma Wet!!"

A couple of minutes pass and he yells it really loud, "IMMA WET!!"

People are starting to look over at us as I'm trying to blot the nonexistent-wet spot and my seven-year-old child is jumping on the seat and flapping his hands and repeating, "IMMA WET! IMMA WET!"

I place my hands on his cheeks, pull his face to mine, and say, "I know you're wet but we're inside and you need to use an inside voice. It's all dry now. You need to sit down."

He smiles at me, like a laughing smile, and whispers, "Imma wet", and then sits back down. He sits down and just starts giggling.

I think he got a kick out of his little show he put on.

I want to celebrate that he didn't strip in public. However, I'm a tad fearful that he is starting to find his public outbursts humorous.

The Never-Empty Nest.

2011-06-28T19:08:00.000-04:00

Tuesdays Corbin has speech therapy. Brian and I go and we stay in the waiting room (though now we get to hang out in the office since I'm an employee there). He packs his iPad and is giddy with excitement that he gets to watch a movie on it for an hour. I cherish the time to just read a magazine. Just relax and fill my head with nonsense.

Usually I make mental lists of things I want to buy, but then never buy. Or make notes of an easy exercise routine that I also never do. Today was another story.

I picked up a copy of a happy looking Good Housekeeping and ended up being sucked into a story about a family with two adult children with Fragile-X syndrome. My hour a week that I cherish to not think about anything too important turned into a sob-fest. For real, I had tears in my eyes. I was very thankful I was tucked away in the office away from the prying eyes of other parents.

The Never-Empty Nest. That's what the title of the story was. That should give you an idea right there of why I was crying. Yes, the story was beautiful in a way. The love the mother has for her children is so touching and so real, especially the part of the story where she says that she'll listen to the same verse in a song 87 times back-to-back because she wants to give them happiness while she knows she can. She doesn't know if their future will be happy, when she is gone or unable to care for them, so she wants to make sure their present is as great as it can be. I warned you- tearjerker!

It's nice to see stories like this popping up, even if it makes me face my own demons and fears. I really am frightened about the future of our children (not just mine) as the numbers continue to climb for those who have disabilities, not just autism. For parents like the mother in this story, and for myself, there are no acceptable placements for our children. It's immensely scary.

But for now I will take advice from the mother in the story and steal her mantra- "I never think past dinner time."

Our New Babysitter

2011-06-27T21:38:00.000-04:00

Today marked another first for our family.

It was the first day with our new babysitter.

We've never used an outside babysitter. I've always just had family or close friends do the job for me.

I found a wonderful girl who has just finished up her teaching degree in three years. She's the oldest of six children who were all home-schooled. She is a volunteer with the adult literacy program at the library. And she's going back to school in the fall to get her Masters in Special Education.

Could she be any more perfect?

Today was only half-a-day of work and when I came home she was building a train track with Brian. She told me that he gave her a hug during the day and even did some foot-tapping to her. (Foot-tapping: one of Brian's OCD behaviors where he needs to tap both of your feet with his own feet.) I think that's a good sign.

Then she tells me, "Corbin discovered one of my little quirks."

I stand there, waiting, thinking to myself: I knew she couldn't be perfect.

"He found out how much I like picking up rooms and finding homes for all the toys."

Sweet. Jackpot. She can clean any room in the house if she really wants to.

Seriously, I really like this girl. She gives off such a great vibe. She is certainly making this transition easier for the person who was having the hardest time with this change....ME.

I Don't Always Think Things Through.

2011-06-26T08:12:00.000-04:00

Who was the genius that told her sister she should buy Brian balls that we could put inside of his BodySox for some sensory-type activities?

Yup, that was me.

Doh.

Absence

2011-06-25T08:48:00.000-04:00

They say absence makes the heart grow fonder.

Not that I was ever at any loss for love for my two boys.

But seeing them yesterday after seven days of them being gone was surreal.

A grin spread from ear to ear that I couldn't lose no matter how I tried.

I hugged them so hard that I heard Brian gasp for air.

I didn't want to let them go.

Corbin kept repeating, "I've missed you so much Mom. I've missed you so much Mom.", while snuggling into the familiar crook of my arm.

Brian kept doing his OCD routine of touching both arms, both cheeks, both feet. Then starting all over again. Checking to see if it was really me.

My babies are back home and everything seems right in the world again.

How Good is Your A-dar?

2011-06-21T16:35:00.000-04:00

Would you know he has autism?

If you are not familiar with autism, I don't think you would.

I think if you are a parent of a child with autism, you might.

Just look at the position of those hands.

Really that's the only thing that gives it away.

But to me, that is a real telltale sign.

What do you think?

I mean, besides the fact that you think he is the most adorable little boy on the planet.

Strange Places.

2011-06-17T07:35:00.000-04:00

For a boy who demands comfort in so many things...

Comfort in clothing....

Comfort in routines....

Comfort with thumb-sucking.....

You sure do pick the STRANGEST places to lie down and relax.

Our new kitchen table has become a favorite resting spot.

Hanging out inside the van during one of Corbin's rainy baseball games...
Brian decided to lie across the top of the seat for a lengthy period of time.

The Post-It Game

2011-06-16T09:39:00.000-04:00

One of Brian's new games.

Remove each single piece of paper from a pad of post-its.

Fun.

End of School Year Chaos

2011-06-15T11:13:00.000-04:00

Just when you think the going is good, take away all forms of routine and see how your child cooperates.

The end of the school year is suppose to be a time of fun and excitement for most kids. For a child with autism, it's hell. All of the routines that made them feel safe and successful are taken away for fun things like field day, concerts, BBQs, parties, and award assemblies.

Yesterday I went to Brian's classroom's party. He was not having it. He did participate in making his own snack- cutting up strawberries and well that was it since he didn't want any bananas or blueberries and he couldn't have the yogurt.

Then you were suppose to move around the stations with your parents and make fun crafts. Brian instantly tried to isolate himself at the sand table.

Watching the wheels turn as the sand sifted down was so much more calming and soothing than the twenty extra bodies in the room and all the noise.

His wonderful one-on-one got him to participate in two of the crafts, but it's evident by the thumb that he's still in major need of self-soothing.

Finally, I told him we could go for a walk. Finally, meaning I think we lasted seven minutes in to the party. As soon as we were out of that atmosphere he was smiling and not crying. Things like that are still really hard for him. Generally I don't try to let him get out of things...but I didn't feel it was an academic thing- it was suppose to be a fun thing. And if he wasn't having fun, what was the point?

Luckily we ran into our special ed teacher as well as some other kids having a movement break in the multi-purpose room. He jumped right in...it was much more conducive to his idea of a party.

Him not wanting to have a real part of parties and things that aren't a normal part of his routine doesn't bother me. There are some things that I feel we need to adapt to him and there are other things that he needs to adapt to. It's not something I'm gonna push at this point.

Attention Hog

2011-06-14T17:49:00.000-04:00

My boys are only 18 months apart.

Everyone use to ask, "How do you do it?" when they were little. I, honestly, thought it was easy. Both of my boys were such good babies and toddlers. Never fussy unless there was a reason to be fussy. Slept alright. Smiled and cooed at everyone. Hit all their milestones early. Really, it was good.

Ask me that question today though and I'd look at you with a crazy look in my eye.

You know what is the hardest? Corbin needs attention, all the time. It's who he is. He's an extrovert. He wants to talk to you every second. And when Brian is having a meltdown Corbin doesn't put it down a notch, in fact he ups it. I swear.

This morning it was time to leave for school. For some reason this upset Brian. He started crying. He wouldn't tell me why he was upset (not that he ever does) and Corbin decided it was a great time to take pictures. Here I am sitting on the stairs with a crying Brian on my lap, trying to calm him down, so we can get out the door and not be late for school and Corbin keeps yelling, "Show me your face Mom! Show me your face Brian! One of you show me your face- I need to take a picture!". The last thing Brian needs when he's trying to come down from a tantrum/crying fit is increased noise. Corbin hasn't seemed to figure that out yet, no matter how many reminders I give him.

Then....

This afternoon we're leaving the grocery store where Brian decides he's just going to bolt out of the store to our van without holding my hand. I'm chasing him with the bag of groceries in one hand and Corbin yelling, "Mom, Mom, Mom, want a Naruto massage? Mom, Mom, Mom! I'm talking to you Mom!!". I'm trying to talk to Brian to reprimand him and be firm about the hand-rule in parking lots. "Mom! I'm asking you a question Mom!!"

I whip my head around, "NO! I do not want a massage right now Corbin!! Can't you see I'm busy?"

Plus how do you give a massage while we're walking in a parking lot? And what the hell is a Naruto massage? He's just making up something to get the attention back on him.

I feel bad that sometimes I need to block out Corbin so I can deal with the tantrum or behavior of the moment but it has to happen. But honestly, when he does it, it really irks me! Probably because Brian's moment is already putting me over the edge and then add on the constant nagging....really, can you blame me?

He Wasn't So Lucky.

2011-06-13T20:02:00.000-04:00

As I was walking by with a pile of towels I heard Corbin's friend asking Brian which costume he wanted to wear. I heard Brian respond, "Cossum". Corbin's friend repeated the question and Brian echoed it back to him again.

It was then that I heard Corbin pipe up, "He doesn't speak English."

I quickly grabbed a nearby notebook (Big Daddy style) to jot down what I was going to hear. I wanted to remember where this was going to go and I just knew it would be a bloggable moment.

Friend: "Why?"
Corbin: "I don't know. (pause) Because he has autism."
Friend: "What? What is autism?"
Corbin: "Peoples just have it sometimes."
Friend: "How did he get it?"
Corbin: "Sometimes you just grow up with it. We're lucky we did not grow up with autism. Brian wasn't so lucky."

Several thoughts have been running through my head since this conversation.

How abruptly it ended. They started talking about English and what other languages they knew. Then five seconds later they were back on the costume subject.
That our friend had never questioned this before. He has been to our house a dozen times and he goes to the same school as the boys, but he's never realized Brian was "different" before today. I like that.
Corbin's blase attitude about autism. Yup he's got it. Not a big deal.
That last line. Honestly I didn't think it was going to take that turn when I grabbed the notebook. I thought Corbin would do the routine of "Our brains just work a little differently" that I have been feeding him for years now. I have NEVER referred to having autism as being "unlucky". But that's how he sees it, and I completely get it.

Superman, Education, and Statistics

2011-06-12T08:34:00.000-04:00

Have you watched Waiting For Superman yet?

I know, I'm way behind the ball on this but just got it on my Netflix a few weeks ago.

Sad stuff. And it doesn't even look into the special education part of these schools. Scary.

Honestly, I knew it would be a thought-provoking and anger-inducing movie. I did not, however, know it was going to make me cry (okay I might be a bit of a sap).

Even sadder because my school district is looking more and more like the ones portrayed. Exactly TWO days after I watched the documentary a newspaper article was released that said our high school's graduating class has lost 40% of it's members since their freshman year. Sure maybe a few students have moved away but really we're looking at our school district failing dozens of kids.

I know I talk a lot about the people that are responsible for my children's education and I usually have very warm feelings for them. I think they are great people, great educators, and great compromisers (with crazy parents like myself). Yet, you can only do so much with what you are given. Our school is overrun with disabilities and poverty. Our school budget is suffering. Things get cut when things need to be added.

Even before the boys started school I wanted to look into our neighboring district. Amazing what one town over can offer. When I ended up doing my second internship in that district I really started itching to move there. They have an OT room! Actually they have TWO! They consult with our favorite ABA professional! They have a different math curriculum they can offer when their regular math becomes overrun with language! They have enrichment programs up the wazoo! They have a dedicated autism program!

I'm still not sure if and when we'll move (of course housing is much more expensive and limited on the other side of the tracks) but it's our goal.

That being said.....on Friday as I picked up my boys after school the principal came rushing out of the school in a direct line towards me. He wanted to tell me that finally, FINALLY, our school district will have a dedicated autism program in the fall. Up until now they have had one teacher, one poor soul, to work both the autism program and the behavioral program out of ONE room. It was too much for anyone and probably part of the turn-around rate that I spoke of. One dedicated program for five children with autism out of it's own room and with iPads for the students (okay iPads weren't promised but he said he was putting in the proposal).

Sounds promising, right? Sounds exciting. And it does make me feel a bit more positive if my goal of moving this summer doesn't happen. But not promising enough for me to completely ditch my idea of moving. It will be a first-year program. Do I really want to waste another year letting my child be a guinea pig and perhaps lose a valuable year? And it's not just Brian I'm worried about- Corbin has his own academic needs that are becoming increasingly more pronounced and it's really him that I worry about falling into that 40%.

The school doesn't know that we've been trying to finagle our way into another school district (They do now! Hi guys!) and it's silly because I feel like I'm going against their loyalty a little. It's like I'm in a relationship and I think it's time to move on but I don't want to hurt anyone's feelings. However, you wouldn't bring your car to a mechanic that only fixes it 60% of the time and fails the other 40% would you? I don't want either of my children to become a statistic.

Unfortunately we can't wait around for Superman to fix everything, I like the direction the school is going in, but I'm going to keep sending out those rental applications.

Another Reason We'll Miss Her

2011-06-08T19:25:00.000-04:00

This afternoon I watched Brian exit his school while holding a plastic bag in his hands.

Right then I knew something was up. Brian doesn't carry things. Brian is above that....okay, I don't think he thinks that, but he hates to use his hands for anything other than flapping. If you see Brian carrying his backpack or a bag of groceries that I force onto him, his face will usually be in a grimace and he'll be dragging it around as if it is half of his body weight.

Today was different because he was grinning from ear-to-ear and had this little happy skip going on.

Inside the bag was a game called Color Train. Oh yes, it's a train game. That explains the smile.

I thought it was something we got to play with for the night, like some of the projects/kits that had been handed out during the year. Then his ed tech explained to me that Brian's teacher gave it to him. To keep. Have I mentioned how much I'm going to miss her next year?

It's Too Quiet Around Here...

2011-06-06T10:30:00.000-04:00

I just got off the phone with my sister bragging about how much I had accomplished.

I had completely cleaned and reorganized the laundry/storage room. I had also done the same to our outside "shed" and had moved the furniture around in the livingroom.

All the while Brian was hanging out in my room watching a movie he had picked out.

Or so I thought.

I had hung up the phone and decided to go check on my little angel.

As I climbed the stairs I heard the fan in the bathroom and assumed he was going to the bathroom (if the light is on the fan needs to be on according to Brian).

I open the bathroom door and instantly inhale a thick cloud of something....

Brian is trying to stand up on the floor but is slipping and sliding everywhere.

There is a white film hanging in the air and on the floor, toilet, sink, mirror, radio, toiletries, EVERYTHING.

That's a red hair dryer- it's not meant to have white speckles.

And lying on the shelf is the culprit- a bottle of spray-on sunscreen.

I keep my ancient CD player in the bathroom- it's still working
even after this sunscreen bath. It's a keeper.

The very same sunscreen I had tried to find in the morning and couldn't. The little bugger was probably hiding it for the opportune moment.

A Common Theme

2011-06-04T13:23:00.000-04:00

Look at all these pictures.

Do you see a common theme?

Whenever I see pictures of myself with the boys in public I notice that I always have at least one hand resting on Brian somehow.

I have tons more pictures like this.

Sure part of it is because I want him to actually stay in the picture.

But another huge part is that being in busy public places scares the hell out of me.

I'm afraid Brian will see something he likes and bolt for it.

I'm afraid I won't see him leave and then when I do and start to yell his name I'll be overwhelmed realizing Brian doesn't respond to his name.

I'm afraid he'll realize he's lost but not be able to tell anyone his name, age, or where he lives.

I'm afraid he'll go to any adult that offers him a smile and a hand to hold on to.

Just one of the many reasons studies have shown parents of children with autism have stress similar to soldiers who have been in combat.

Marching to His Own Beat...as always

2011-06-02T10:29:00.000-04:00

When school musical time comes around I always have the same goal for Brian: "Please just stay on the stage. Stay on the stage and don't cry."

I've given up on hoping he'll sing with his class or do any of the movements- even though he'll burst into song at home all the time- he hasn't generalized it to school yet.

So he met his goal. And even though he's doing his own thing I still think he was the cutest one up there. Of course I'm kinda partial to his cuteness.

A Sign of Real Comfort

2011-05-27T09:50:00.000-04:00

After graduation last weekend my family was kind enough to throw me not only one, but two, celebrations. The second one was organized by my mother and was over an hour away at my Uncle and Aunt’s home. The boys and I do not get up there enough, even though a vast majority of our family lives in that area, and hadn’t visited there in about 10 months.

As soon as we pulled in Brian jumped out of the van, I swear before I even had it turn off, and ran to the trampoline. He loves trampolines. He really was content to play between there, their camper, and my cousin’s playhouse with all of the other kids. Their piece of land is nice and secluded and I really didn’t need to keep that close of an eye on him with so much family around.

I was enjoying the grown-up company when I saw my Uncle approach my Mom and whisper something to her. My Mom hurried next to me and leaned into my ear and whispered, “Billy just told me Brian is in the bathroom and he might need some help.”

I’m instantly up and moving as fast I can without making too much of a scene. All I can picture is walking into their bathroom and seeing crap wiped all over the place or a complete roll of toilet paper clogging up their toilet.

I go into their house to find one of my distant third or fourth or fifth cousin standing in the hallway with a bewildered look on his face. He’s only seven, and Brian makes me look bewildered most of the time, so I knew something was up.

I turned into the bathroom to find Brian…….completely naked.

Turns out he did need to go number 2 and he did it. I couldn’t find any evidence anywhere in the bathroom. He just always thinks he needs to get completely naked when he does a bowel movement. Doesn’t do it when it’s just number 1, but always does with BMs.

The problem was his pants and socks were damp from playing in the wet yard. Brian will deal with wet clothing, but once it’s off he will in no way put them back on…even if the spot is just a millimeter wide.

Of course, I didn’t pack any extras. Why would I? That would mean I actually plan ahead and am prepared. Thankfully it was a quick fix as my Aunt threw his clothes in the dryer and went through her daughter’s clothes to find something we could use. I had to turn down the blue sweatpants with “Justice” on the butt in rhinestones, but we found some black leggings with just a little bit of lace on the bottom that we could hide in the socks.

Thank goodness for family.

Really out of the whole ordeal, the only thing that stuck with me is the fact that Brian had a bowel movement in a strange bathroom! That’s a big deal!

Despite not seeing our extended family that often I guess he feels comfortable there. I think my Uncle and Aunt should feel privileged that he let loose in their bathroom. He doesn't bestow that honor in just any old place.

Rotating Teachers

2011-05-26T09:22:00.000-04:00

Brian’s IEP was moving along so nicely. We talked about ESY- not completely crazy about the amount of time our district is providing but it’s better than last year, next year’s teacher, and how well he’s doing. I saw his Kindergarten teacher hold back tears as she tried to convince me to let him do a third year in her classroom (oh I kind of want to but I know we need those extra years for life skills when he’s a teenager/young adult- I really just want her to move along with him each year!).

Everything seemed to be going fine as we talked about increasing direct instruction next year, communication boards, and adaptive PE.

Then as the meeting was drawn to a close the principal dismissed everyone except for myself and Brian’s case manager to tell us that Brian’s special education teacher would be leaving.

I’m angry about having it spilled upon me like that. I felt like the entire meeting I based around the fact that I’m completely confident with her skills and her relationship with Brian. Now I just increased his direct instruction time to be with a person that I don’t even know.

I know each new school year for a child with autism is a transition but my poor child has had it amplified every year.

When we had our spring IEP before he was slated to start Kindergarten we met a very nice special education teacher and he seemed so innovative with his ideas and I was very excited for Brian to start his public school education with him.

We were told near the end of the summer he moved to a principal position elsewhere and we then had to meet a new special education teacher…who was a joke and was “let go” after Brian’s first year. I’m not the only cynical parent that would attest to that statement- I know many who had to complain about her and her “expertise”.

Then we did summer school last year and were introduced to a wonderful woman who we were told was going to be Brian’s special education teacher. We were so excited he got to work one-on-one with her during the summer school session as he would be comfortable with her when fall came.

A few weeks before school started we were told she was moved to another special education slot in the district and we now had a new teacher.

Ms. M turned out to be the special education teacher. She came from a background with working at a residential home with children with autism. She was knowledgeable about Brian’s diet (her mother actually bakes and sells allergen-free goodies). We loved her. She was great with Brian and an integral part of Brian’s success this year.

So if you are counting that is four special education teachers we’ve been introduced to in the two years of public school that Brian has done.

I hope the next one can fill Ms. M’s shoes! And that s/he sticks around for a while!

Do You Know What Time It Is?

2011-05-24T09:44:00.001-04:00

Peanut butter jelly time?

Nope, unfortunately.

It's IEP time.

Again. Already.

Brian's IEP is this afternoon. For some reason I am feeling totally unprepared. I kept digging trying to figure out why this year seemed so different than other years. I've been doing this IEP thing for six years now between him and his brother (though of course in the beginning stages they are called IFSP here in Maine- or is that a global name?).

Corbin's is Thursday and I feel super prepared for his. I'm gonna go in there and take some names and demand all kinds of things.

Then I realized that was it. Brian has had such a great year compared to all the other years. I think this might be his most improved year yet. I'm not use to going to an IEP meeting and not having a list of things I want changed. I guess I feel more confident going in there with things I want changed than not having that list!

Not to say I don't have major concerns. First grade is much more different than kindergarten. I know we will be making a lot of changes, including a lot more time in the resource room getting the academic work in there. There won't be all that great free play or quiet time like they get in kindergarten.

Hopefully it will all work out okay.

I'd much rather just be wasting my brain cells watching this...

Looking Towards Our Future

2011-05-20T10:28:00.001-04:00

Tomorrow I graduate.

I graduate with honors with my first degree of three (I hope). Sure, my children will probably have families of their own (god-willing) by the time I receive my Masters, but that's what I'm shooting for.

I am damn proud of this accomplishment. The past two years were hard. It was hard doing this as a mom, especially as a mom with a child on the spectrum. It's hard for me to make sure I take time for myself and probably the reason I really pushed myself to succeed was because I looked at this whole pathway as a choice for not only myself, but for my children as well.

They were "my reasons", as I have said time and time again. I want to do better for them and provide them with more. I want them to be proud of me and to know how important education is. I want them to know that no matter how hard things seem in the future, they can push and persevere through it.

I'm so proud of myself that I didn't just allow myself to be a college drop-out. I dropped out of college when I was 18 because I thought I had this rosy life in front of me. I was told I would always be taken care of and that if I stayed in college that certain "caregiver" wouldn't be able to be faithful to me (I know- I should have started running right then and there). I thought I would get to be a stay-at-home mommy and wife. Well, that didn't happen.

But we all learn from our mistakes. Life is good now. Though things in the past have been far from perfect it all led me to where I am now.

It's onwards to a brighter future at this point. I couldn't be more excited. And though I often say I do things "backwards", it's exciting to share this very important day with the two people that mean the most to me.

March to Your Own Beat.

2011-05-18T11:19:00.000-04:00

Some things just aren't worth fighting.

Like this day for instant.

It was time to go to Corbin's baseball game. Though Brian had been properly dressed for school, as soon as he had come home he had put on these Red Sox pajama pants- not only are they about two inches too short for him but he also had them on backwards. He was wearing blue-striped socks and a Merry Madagascar pajama top (which was thankfully hidden under his coat).

I don't really care that he wants to wear pajamas, backwards or in the right direction. If it makes him happy and comfortable I'm just gonna go with it until I can afford to buy him an entire wardrobe from soft!

Those Buzz Lightyear shoes he's wearing, do you remember those (if not, click there!)? He asked for them, using his words, and he has worn them every. single. day. since he got them. The result? They now have a hole in the bottom of them. Am I throwing them away? Nope.

I think it might be because I'm kind of a slacker, but I just don't feel like fighting with him to put on a new pair of shoes. He owns five other pairs of shoes- some of them have never been worn, two of them have been worn on special occasions. He hates them. I can't force him to wear them. Would you like to be forced to wear shoes that you don't want to wear? That's my argument anyway, when I get reprimanded by my ex for not supplying him with adequate footwear (yes, I acknowledge that shoes with holes in the bottom aren't exactly the best footwear for my children).

So to make him happy, make me happy, and make Brian happy....I'm off to do some internet shopping for identical shoes. Wish me luck!

To the Best Mommies I Know...

2011-05-15T15:06:00.000-04:00

I love holidays. I love the traditions, the time spent with family, and I also love that they give me a chance to clearly see the gains Brian makes from year-to-year. For example I can think about how he was actually engaged in dying eggs this year and did as many as his brother did compared to last year when he just did a couple and he mostly just threw them into the cups of dye.

Holidays can also be hard and lonely. Lonely in the fact that kids with autism may not understand what the holiday is, what it consists of, or what the meaning of it is. I sometimes find Mothers Day kind of hard. Call me selfish, but I wish Brian would wake up and say “Happy Mothers Day!” and shower me with kisses and eagerly anticipate giving me whatever handmade treasures he has come up with. I know he loves me and I hope he is grateful for all that I do, but that acknowledgment would be nice. I don’t feel too bad for myself because I do have an older child who does all of those things to the umpteenth degree. Corbin blessed me with jumping on me in the early hours with lots of hugs and kisses. He had wrapped a half-dozen handmade gifts as well as a cookbook that he had spent his piggybank money on at his school’s book fair.

Looking at the cookbook Corbin bought. I had no idea he had bought this.
It was completely on his own. Love that kid.

I’m not saying Brian didn’t proudly hand me the flower he had planted for me after he watched Corbin give me his gifts but the connection between the flower and the holiday was not there.

Brian handing over the flower...in his underwear. This shouldn't shock anyone by now.

But it makes me wonder about families who have just the one child that is on the spectrum. It especially makes my heart go out to those single mamas with that one child. Did they have someone tell them what a great job they are doing? Because in my mind Mothers Day is a very special day. It’s a day to honor Moms everywhere. And no one deserves that honor more than Mothers who have children on the spectrum.

So even though this is a week late, let me tell all of you out there what a great job you are doing. Let me tell you I know and I appreciate all of the sacrifices you make for your children. I want to tell you I know the heartbreaks and the hardships you endure and that I fully recognize the blessings and the joys that you incur from the simplest things in life. There is no finer mother out there, than those who give it their all when it comes to their children with special needs. Happy belated Mothers Day to you all!

Kite-Flying Fun!

2011-05-15T14:47:00.000-04:00

I had the brilliant idea of having a kite-flying party for Brian's seventh birthday. Seriously, I take party planning pretty seriously- ask my family- they hate me for it. I get all stressed out about stupid little details.

This was the first time we invited classmates. First time ever. I was so stressed out about that as well- because no one RSVPed (such a thing of the past, I guess). Not that Brian would've noticed if no classmates showed up, but I would've. However, in the end, we did have classmates show up. Phew, I didn't have to send out any hate mail ;).

I made a cute cake with a kite-flying scene on it. It was gluten, casein, and soy-free. But not sugar and food dye free. And my little boy sat on the toilet about five times that evening. Was it worth it? I'm not sure. He sure lit up to see that cake and he loved every single bite of it.

The kites were a great idea. No, Brian doesn't like to fly kites. He likes to watch them. His classmates and cousins enjoyed flying kites (and adults too). It turned out to be VERY windy that day and we had a lot of exciting, nose-diving kite- moments.

Brian still hates the Happy Birthday song for some reason. He seemed to hate it even more so this year than last.

Brian's big present from us was a new bike. He was very excited!

Overall it was a wonderful seventh birthday for my little man. I saw a lot of smiles and that's all that really counts. I can not believe it's been seven years. Happy Birthday Brian!

Special Olympics

2011-05-12T10:00:00.000-04:00

This was our first ever Special Olympics event and it was a blast.

It wasn't without it's hitches, but overall it was a wonderful day.

Him and his team all looked so adorable in their little wind suits.

Can't tell which one is mine? He's the one giving the crowd the middle finger.

He competed in all three events that he signed up for. He seemed to like all of the events....except for maybe the standing long jump. Though I'm not sure if it was the event he was crying about or the fact he had to *gasp* wait his turn and/or that he had to do it three times (repetition is great when it's on his terms).

His ed tech was all ready to run the 50m dash with him but he took off and did it independently. He actually even took his thumb out of his mouth for the 50m dash. Josh and I stood at the finish line with popcorn and his Woody doll. Yet when he crossed the line he just went over to a stranger and gave them high five.

Brian's regular-ed class skipped classes to come over to cheer him on. He certainly has quite the growing fan base.

I really value the idea of Special Olympics and how cool and important it was for Brian to have a day that his skills (whatever they may be) were celebrated. We'll definitely stay a part of this organization so there will be many more proud and funny posts regarding our foray into athletics with Brian.

Dark Confessions

2011-05-10T15:17:00.000-04:00

I'm behind on blogging. Really behind. I've had birthday parties, random stuff, and Special Olympics to blog about.

A couple of weeks ago I wrote this post though. It's outdated now as Brian's birthday has passed but I still want to share it. I didn't know if I was going to share it, I just saved it as a draft. I was scared to be judged or looked upon badly because I had these feelings. Then last night I was reading Kim Rossi Stagliano's book (which I love!) and she said in one of the chapters that sometimes her daughters' birthdays can depress her. It made me think I wasn't alone and to put on my big girl panties and just post this damn thing already.

So here you go- a week too late. And I'll try to get those happy posts out soon!

Brian's birthday is coming up.

Most of the time I get really mushy about these things.

However, there is this one thing that pops up every once in a while.

I don't say it out loud because it's depressing. I usually don't even let myself finish the sentence when it's in my own head. Yet, I think I try to be honest here. This is a place for me to let it all out. My place to confront the thoughts I don't want to admit I have. I confront them, then I move on and enjoy the positive things.

So here it is. I'm putting it out there.

Brian's birthday sometimes depresses me.

I feel like another year has gone by and he's still so behind. I feel like we just lost another year where no big gains have been made. Maybe there were things I should have been doing but wasn't. Another year of so many steps back and not enough forward. Another year of "what ifs?".

I know this probably makes no sense since this past year really has been successful for him. And I know I can look back at my hundreds of posts and see that he has made gains. Yet, he is still years behind developmentally.

And it breaks my heart.

I know I talk about acceptance a lot. Yet, I do, honestly, struggle with it. It is effin' hard for me to accept that my little boy may never catch up to his peers. It is so effin' hard for me to accept that his life as an adult may be nothing like I had hoped it to be. It is so freakin' hard for me to accept that he may not be able to experience the joys of life that we all take for granted. It effin' kills me to think that instead of looking at jobs and colleges and girlfriends and traveling when he turns 18, we may instead be looking at group home choices.

So another year has gone by and we're still kicking. We're still fighting to get my little boy's future as bright as it can be.

And he's still here reminding me of how perfect he is, no matter what. That smile of his really can bring me back down to earth and help me put things into perspective.

I'll get over this wall, like I do every time I run into it.

Future Tycoon

2011-05-02T21:19:00.000-04:00

I know I often brag about how wonderful, generous, empathetic, sensitive, honest, etc., etc. my older son, Corbin is.

Most of it is true.

But lately his businessman (step-on-anyone-to-get-what-I-need) ways have been coming out.

First it started with him asking me why I helped an elderly woman in the grocery store parking lot find her car. Sure, he might have had a point because if she was so confused that she couldn't find her car (which ended up being right where we started) there may have been a possibility she shouldn't have been driving. I told Corbin I helped her because it was the right thing to do and it makes me feel good to help others. He replied, "Yeah me too, if I get paid."

Over vacation he started to write a story- I wanted to work with him on handwriting so I encouraged him to write a story about catching the Loch Ness monster (his newest obsession). He told me he wanted to sell copies of the book and he was so ecstatic when a few friends and family members said they would purchase a copy when it was done. When a friend asked if she could have hers autographed he said, "Yeah, for another dollar."

Then to top it all off, tonight he asked if he could make up a story to tell me at bedtime. It went something like this:

"One day I was going for a walk when oh my goodness I saw a pile of ones on the road. I picked them up and yelled out "Whose money is this??". No one answered. I thought, "Okay it's my birthday, I guess I can keep this money". I walked further up the street and there was a pile of fives! I yelled, "Yoohoo!! Anybody out there?" No one answered, I thought it was my lucky day!! I looked up the street and there was a stack of tens! Again I yelled but no one was around. And you won't believe this- there was a pile of hundreds! Hundreds, Mom, can you believe it??? I suddenly had to go to the bathroom and I stopped at a store where there was a bathroom and opened the door and SURPRISE!!!! My family was in there and said, "Happy Birthday! All that money is for you!!" And we had cake and ice cream. The end."

Complete surprise ending, huh? Celebrating a birthday in a public restroom. Love it.

I use to hope Corbin would stay on his chosen career path of being a scientist, but I think he's gonna be happy being a businessman with his shrewd sense of business and obvious love for money.