Wednesday, December 30, 2009

Corbin's First Tooth!

Corbin was quite upset when his baby brother lost his first tooth before him. Now he has officially caught up by losing his first one!

Unfortunately, he has no clue when or where he lost it. So just like Brian's first tooth, I don't have it to save it.

He wrote a letter to the Tooth Fairy tonight to explain the situation.

Dear Tooth Fairy,
I lost my tooth and I can not find it but I still want money. So just put it on my hand or my belly or anywhere on my body. Or you can put it anywhere you want, just not in a hard spot. Okay, tooth fairy?
I think I lost it at my Dad's, so look there first, then look at my Mom's. You might need to look everywhere outside. Please.

Good night, Corbin

P.S. I said good night because you sleep during the day because you are awake at night.


Time for a Change...

Every once in a while I get an urge that things in my life need to be changed. And when I get that urge I always want to do something completely different with my hair. May seem insignificant to some, but it always seems to get me feeling like I can take on anything.

Don't worry, Mom, I'm not going to dye my hair black again (remember it came out purple?).

I have decided to get a body wave perm done to my hair.

I have a slight wave in my hair and the only way I'll wear my hair down is if I curl it or gel up the waves- so why not get it permanently that way so I won't have to mess with it.

Hoping I come out looking somewhat like this....






And not like this....

Saturday, December 26, 2009

Christmas 2009

Do you ever have those mornings, that within just a few minutes of the day, you look at your child and say, "This is going to be an autistic day?".

That's what happened to us on Christmas morning.

Don't get me wrong. We had a wonderful day, but I couldn't help to notice that Brian was off in so many ways and I believe he would've appreciated the day and had more fun if he wasn't having an "autistic day".

We awoke and decided to check NORAD to make sure Santa had come to Maine before we went downstairs. When we got to the site it said that Santa had finished his entire 2009 trip and Corbin hurriedly ran down the stairs while I followed behind carrying his cuddly little brother.

Corbin started to dance as he saw the piles of presents and the set-up toys. Not sure how Santa does it at your house, but he always sets up one big present for each of the boys so they can immediately start playing. For Corbin, Santa had built two Lego Indiana Jone airplanes, and for Brian, Mickey Mouse Clubhouse Raceway.

Corbin started to fly his airplanes all around and after just a few examples Brian figured out every aspect of the raceway.

This was the first year that Brian really got the idea of ripping the presents open but just didn't seem to care about the contents,which is kind of normal for him. It's aggravating though, holiday after holiday, to really believe you found just the right gifts to really get no reaction.

Corbin's big gifts of the day were a few science themed presents (as he has decided he will be a scientist when he is older), including a microscope and a telescope from my mother. He also got a few movies he's been wanting, a robot, legos, spy gear (his other career choice), a woodworking set, and so much more.

Christmas is so magical for Corbin. I love this age. Every gift, right down to the new toothbrush, got a huge smile and a "Wow!". He truly loved the whole experience of Christmas and I truly cherished sharing it with him.

Brian's theme this year was definitely cars. On top of the Mickey Mouse Raceway he also got a Disney Cars spiral race track, an electronic race track, a parking garage, and a Hot Wheels race track. He got his own digital camera and toy laptop as he's obsessed with my adult version of them.

After opening presents, Brian took the one new train he got, that came with a Thomas video, and disappeared into his playroom to play trains. He didn't touch any other new toy for the rest of the day.

Later in the afternoon we went to my fathers to open more gifts with our family. He immediately remembered Grammie's ceramic Christmas train that sits on a high shelf and started pointing and saying "choo choo" obsessively. He would climb to whatever relative he thought didn't know he couldn't have it, and hug them, then pull them to the shelf and say, "choo choo". He did finally give up on it after a short tantrum.

He opened his presents from his family and just threw them aside. Though I know my family understands Brian better and better every year I still feel bad that he does not show appreciation for the presents that they spend time picking out for him.

Then, after not really showing a care in the world for any one present he had opened that day, he eyed his younger cousin's gift- a Fisher-Price Play N Go School House- and decided that was what he wanted. Who would've ever thought he would have any care at all about such a toy. But he did and he put his blinders on and went after that present. He wasn't having it that he had to share it, especially since it wasn't even his gift. It took several trips to my parents bedroom and rubbing his back, giving deep-compressions, practically sitting on him to give him the pressure he was seeking, and singing little lullabies to him to make him finally give it up. I said to him, "We can go back out and play but no more yelling, it's time to be happy. Happy boy. Are you ready to be happy?" and he said, "Happy, yes I do". And we walked out hand-in-hand and he did a wonderful job.

He makes me so proud.

I hope everyone had a wonderful Christmas!

Wednesday, December 23, 2009

Eddie.


Anyone who has known our family personally probably remembers Eddie.

Eddie was the only doll/stuffed animal that Brian has ever had an attachment to. Eddie use to go EVERYWHERE with Brian- it was a nightmare if we ever misplaced him. I even made a scrapbook page dedicated to Eddie. Eddie was a welcome addition to our family at the time because he seemed to help him get over the stage of pulling his own hair out, he'd just twist his fingers up in Eddie's instead.

Then we lost Eddie. I still have no idea where he went. We went without an Eddie for about five months. The first three weeks were awful then he slowly forgot about his Eddie and I decided to not replace it.

Then a donation came into the school where I work and in the pile of toys was an Eddie doll. I remembered the love Brian had for Eddie, and though his attachment to it at times was annoying, I loved that he was attached to anything besides trains at that moment. So I took the new Eddie home with me.

This time Eddie TRIGGERED a new hair-pulling stage. Excited to see Eddie, running his fingers through his hair, somehow made him decide it would be great fun to start pulling his own hair out once again. After I started to see that familiar patch of baldness at the back of Brian's head I took Eddie and stored him away.

We've been cleaning the house, a deep-cleaning, because I have the boys believing Santa doesn't like coming to messy/unorganized homes. We found Eddie tucked way back in the closet. Brian saw him. He hugged him. He's carried him around everywhere today.

I'm sure I'm just asking for trouble but once again my heart just grew watching him love an object and I think I'll allow him to stick around one more time. Hopefully Eddie learned his lesson the last time I took him away and he won't remind Brian of their time spent together pulling hair.

Monday, December 21, 2009

Holiday Montage

The Holidays have been fast approaching and our lives have been direct reflections of that.

First we started off the holiday by visiting Santa and taking a horse-drawn carriage ride through Rockland.

Then we took an entire evening trying to get just the right photo for our Christmas card.
















Corbin put on a personal holiday concert for his grandparents.

















We enjoyed the boys' Holiday Fair at their school.


A day was spent at "Grammie & Grandpa On The Hill" making cookies with our cousins.















And another day exchanging presents, eating yummy food, and decorating snowmen cakes with even more family.





Wednesday, December 16, 2009

[I’m not sorry.]


 


 

I was told recently that I can be selfish because I act as if I don't realize there is anyone but Brian and I. That I act as if we are in our own little world.


 

My. Child. Has. Autism.


I don't think this is something I'm going to apologize for.


 

Let's look at my life.

Every interaction I have with my child takes ten times longer than a normal interaction because I need to wait for him to actually look at me. I need to repeat the question up to fifteen times before I get a correct answer and not just a repetition of whatever I have asked.

Having a child like Brian adds tons of extra housework. Every day I'm cleaning up some kind of mess I probably wouldn't have if my five-year-old didn't have autism. I have to clean up poop smeared on the bathroom wall, a flooded bathroom floor, or chewed-up, spit-out crayons in the corner of the playroom. Brian generally gets a bath at least twice a day, depending on what kind of mischief he has decided to get into.

My dishes are usually doubled, because I work hard to follow a special diet for my child. Most meals are made from scratch and I sometimes have to make double dishes because not everyone in my family is a gluten-free/casein-free/phenol-limited fan. I also have to make homemade bread at least once a week. If Brian's teacher is planning a "cooking" activity, I need to make sure I have a similar substitution so Brian can participate.

I can't go and do the things I'd like to do because Brian doesn't have the attention span to attend. Things like basketball games, plays, going to the museum, or a movie theater. Not that we don't attempt those things but I generally have to leave early and walk around in the lobby or outside surroundings to let Brian get movement and have no noise restrictions. It's not fun for me and it's not a wonder that I sometimes just opt out of those things and stay home with Brian.

Any new situation requires planning. We can't just jump into things, even things as simple as adding snow pants to our outside apparel. That requires me making social stories or picture schedules, using those implementations, waiting out tantrums, and practice, practice, practice.

My day requires dealing with at least one tantrum every day. It requires doing oral-motor exercises every day. Sitting through the same movie day after day. Learning how to block out that high-pitched happy squeal that accompanies Brian wherever he goes. Searching the entire playroom for the correct caboose that goes with that certain engine. Sitting at a table with a very unwilling child to work on letters, numbers, colors, shapes, and whatever else we need to work on, because school and the normal learning through play method doesn't work for him. It requires learning different joint-compression, musgatova methods, and brain gym so I can help him calm his body when needed. I have to learn about adaptive equipment and choose what is the best for him. I've had to learn a whole new way of thinking and a whole new vocabulary just to keep up with the specialists in the field. On a regular basis, I have to find new ways to trick my child into taking vitamins and supplements that I am giving a try to see if they help my baby. I have binders I keep that are four-six inches thick of not only every single evaluation and progress note Brian has ever had but every research paper that I have found that I find some truth in.

Almost every day Brian breaks out in some new kind of rash or his bowel movements change color or consistency. Fun, right? That leads to me needing to figure out what he ate new or was in contact with that caused a reaction. It leads to me having to do a little bit more research and maybe tweaking his diet one more time.

Brian doesn't sleep through the night. I am sometimes up with him three-five different times a night. I often feel like I haven't slept in the seven years I've been a Mom. I'm exhausted.

My schedule has so many added things to it that "typical" parents don't have. Speech appointments, occupational therapy appointments, naturopaths, chiropractors, therapeutic horseback riding, evaluations, case management meetings and pediatricians appointments, sedated dentistry appointments, allergy testing, eye check-ups, hearing evaluations, and lab visits. I have to stay at the school for an extra hour or two at least once a week to answer any questions they have about Brian and to show them the appropriate way to approach some issues, because I am the only one that knows him that well.

I have twenty-four hours a day, just like every other person. I go to school full-time. I have another child that I certainly do not ignore! Is there any wonder that I don't have any extra time? I wonder if ANY Mom, let alone a Mom with a child with special-needs, ever thinks they have enough time to give to everyone.

None of that even includes the emotional part of being a mother to a child with autism.

You don't understand the feelings involved of having a child developing typically, saying words, interacting, so happy all the time suddenly regress to a child who didn't even notice when you came home from work. Unless you've lived it you can't understand the importance of waiting for your child to call you "Mama" and having to wait until he was four years old to do so. You don't have to ignore the stares or have to educate complete strangers why your child, who looks like a big boy, just threw a toddler-sized tantrum in the middle of the grocery store. Or how just the simple touch of his hand to your cheek to show his affection can make your heart jump in your chest.

I do all these things with determination and hope that I am somehow shaping a better life for my child. I have spent so much time these past three years of diagnosis with tears in my eyes. Do you understand that these things are not an option for me? Do you understand that there is no choice in my mind? If there is ANYTHING I can do to help him grow and to perhaps secure the fact that he'll be able to hold down a job, even if it is bagging groceries, I will do it. Everything I do revolves around helping my child reach the quality of life that every individual has a right to. There are plenty of days that I question everything I do, especially when I haven't seen the progress that I want to see, but hope and love keeps me going.

Would I consider what I do, selfish? Never. I have given everything I have to my two boys and I don't regret a second of it. The only thing I'm going to say sorry to is that you don't understand why I do this.


 

{P.S. I have written over 1200 words in this blog and I know other Moms in my position would agree that I really only touched on the tip of the iceberg in all that we do!}

Monday, December 14, 2009

Emotional Intelligence

Today my five-year-old son with autism caught me crying. If Corbin had caught me I knew I would get a hug and a meaningful talk as that kid is so tuned in to my emotions it's scary.

Wasn't expecting much from Brian catching me.

I quickly dried my tears and said, "Hi Brian."

He was looking at me so intently and then appropriately used his new phrase that he's been repeating for a month or so now.

He put one hand on my shoulder and said, "You okay?"

Friday, December 11, 2009

Preventing Harmful Restraint and Seclusion in Schools Act

On December 9th, the Preventing Harmful Restraint and Seclusion in Schools Act, HR 4247 was introduced to legislation. A companion bill was also introduced in the Senate (S 2860).

It's sad to know that such an act doesn't already exist and that one is needed. But it is. Disabled children are being mistreated every day in schools.

This act is the product of a Government Accountability Office report on restraints and seclusions released last spring. The report found hundreds of cases of alleged abuse and death related to the use of three methods on school children during the past two decades. The majority of these cases involved students with disabilities. Still, this report surely doesn't cover the full extent of the problem. Many cases often go unreported and some states don't even keep track of such incidents.

The proposed legislation includes:

• Establish important minimum federal safety standards in schools, similar to the protections already in place in hospitals and other non-medical community based facilities;
• Limit physical restraint and locked seclusion, allowing these interventions only when there is imminent danger of injury, and only when imposed by trained staff;
• Outlaw mechanical restraints, such as strapping kids to chairs, and prohibit restraints that restrict breathing;
• Require schools to notify parents after incidents when restraint or seclusion was used;
• Call on states, within two years of enactment, to establish their own policies, procedures, monitoring and enforcement systems to meet these minimum standards;
• Encourage states to provide support and training to better protect students and prevent the need for emergency behavioral interventions; and
• Increase transparency, oversight and enforcement tools to prevent future abuse.

Please take just a few minutes of your day to ask your elected officials to cosponsor this bill! So many families and children will thank you!

Tuesday, December 8, 2009

Dreaded Dinner Time

I don't know if it's just my imagination but I feel as if Brian's self-limiting himself more and more when it comes to food lately. This has always been an issue, as it is with most individuals on the spectrum, but it's actually been a few days now that he hasn't eaten anything at dinner.
Sure he's eating breakfast- though the only things he eats at that meal is a banana, waffles, scrambled eggs (in a perfect circle only), or Erewhon's rice cereal.
He eats lunch and snacks everyday- again has to be a PB&J sandwich, mac n cheese, a banana, raisins, carrots, and/or a fruit leather.
So there isn't much variation in either meal.
Dinner time I try to only make one meal. You always hear to do that as a parent- I'm not a short-order cook and I don't really want to be treated like one. It's a good exposure to your child to eat/try different foods. I'm not sure though if I'm correct in following this rule with Brian, a child with autism.
Though I only make one meal I do sometimes make two variations of it. For instance last night we grilled up kielbasa, carrots, and potatoes. Josh & I eat it all mixed up together- but I separate it for the boys. Brian would only eat his kielbasa, even though he loves carrots! After I took some raw carrots out, he ate those, just wouldn't eat the ones that had been grilled a little.
Tonight we had pasta. I'm not a huge fan of GF pasta so I made two pastas, but the same topping- broccoli, cheese, chicken brothe, and a little lemon juice. I had a feeling Brian wouldn't touch the broccoli but he likes pasta, sometimes. He wouldnt' touch a thing.
I tried the old trick of "You eat one noodle you get one cracker" which has worked on occasion. Not tonight.
I tried making the pasta be a train, rarely works, but not tonight.
We took the noodles out and counted them and said their colors (they were tri-color noodles). I did this for close to half an hour. Then we started licking pieces. "Just put it on your tongue, like this". He did that. "Now let's bite it like a bear". Not at first, but after a few attempts, he ate one noodle!
We took the broccoli out and, as weird as this sounds, I got him to eat one little nibble by holding the stalk of the broccoli in between my teeth and he bit the other end. The things you will do for your children.
So for dinner my five-year-old son ate one noodle and one bite of broccoli. I don't know how he maintains his high energy level sometimes. Yet at the same time I am extremely proud and ecstatic over those two little morsels.

Saturday, December 5, 2009

I Believe!

Today I told the boys we were going to visit Santa at his workshop and then go see some horses to go for a carriage ride. For all those in the area, every Saturday in December they are giving free horse-drawn carriage rides in the afternoon at Key Bank. Anyways, I stressed the horse part to Brian as in years past Santa hasn't been a very big motivator.
When it was time to get dressed to brave the outdoors I reminded Brian we were going to see horses. The boys got their gear on and I look down at Brian's feet to see he had dug out his horse-riding boots from the back of the closet. I laughed at how observant he can be when he wants to be but also was a bit worried about how he might react when we didn't go to Freedom Riders- the only place he ever wears his boots to.

When we arrived at the Workshop Corbin went right up to Santa and was delighted to hear Santa say, "I bet you want Legos!" and Corbin had just, minutes before, delivered his letter to the north pole that asked for that very thing! Brian wasn't really paying any attention and Santa and Mrs. Claus kept calling his name. I told them that Brian has autism and doesn't always respond to his name. Santa nodded his head as if he understood and stopped calling Brian's name and instead said, "Hey can I get a high five?"- another thing I can't believe Santa knew. High fives are never denied by Brian. He's practically OCD about "high fives".
Brian stopped his circle-walking and went over and gave Santa a high-five. While doing so Brian noticed Santa's black boots that very much reminded him of his horse boots. He stuck his own foot and placed it next to Santa's and said, "Boots!" He kept his foot there for a little while looking at his boot next to Santa, then ran off laughing and walking in circles again.

A few minutes later Santa asked him if he wanted to have his picture taken and Brian walked over and posed for a picture.


That is why I still believe in Santa!

(Oh and the carriage ride was a success after- either Freedom Riders didn't cross his mind or he decided our plans were just as fun)

Wednesday, December 2, 2009

Just Put It Into Gear...



As it was quite chilly this morning I decided to drive our van down to the bus stop instead of walking down. Once I was parked I allowed Brian to unbuckle himself and climb into the front to sit on my lap. He was excited as he doesn't usually get that view and started immediately yanking the wheel back and forth. I laughed, and looked back at Corbin and said, "Brian is going to drive us to school." No sooner that the words escaped my lips, my van lurched forward.
I quickly turn back to Brian to see his hand on the shifter and his little foot stretching down so the tip of his shoe is just barely pushing the gas pedal. My reflexes luckily were on and I quickly braked and put the van back into park.
This is not the first time my little man has surprised me with his knowledge of how things work. Like the time he took apart a whole shelf in a short period of time that really required a screwdriver to remove the screws (still wondering how he did that one). Or how he figures out how to use all electronics before I even do.
Even though I've been living in this "autistic world" for a few years now I still find it interesting how so many of our kiddos with autism seem to not soak anything in yet can figure out the parts to a whole and how things work without ever being formally taught it.
As we all like to say, I have a little engineer on my hands.

Friday, November 20, 2009

Floam Activity


    INGREDIENTS


*Floam- and lots of it!
*A small plastic container (I used the one that is the right size for a pair of shoes)
*Small toys
*Pictures of those small toys


Mix all of the floam you have into the container. Bury the objects/toys into the floam. That's it for the set-up!


Give your child one picture at a time and see if he can find it in the floam.


This activity helps with tactile issues, stereognosis (being able to feel for objects without looking), fine motor skills, and cognitive skills like matching. Plus it's one learning activity that Brian really enjoys! If you want to work on receptive language skills you could eliminate the pictures and just ask your child to find whatever object you have in mind.


My professor actually gave each of us a small package of floam to make into a stress ball of sorts. You can squish it over and over and over again. That's actually what prompted me to write about this activity we have been doing for about a year now.


Oh, and a word of reassurance- floam is not as messy as pictured. I'm assuming they must've changed the makeup of the product because now the colors stay in the floam and they are not sticky at all! Though this picture made it look incredibly messy, I included it because it really speaks to sensory awareness!

Tuesday, November 17, 2009

Green Our Vaccines Initiative

This could really be history in the making! A ballot initiative regarding the safety of our current vaccines and vaccination schedule will hopefully be introduced to Oregon next year! Of course it is an expensive process and all donations are welcomed. For a lot more information and to be able to read the proposed bill go to Age of Autism.

Monday, November 16, 2009

Corbin's Strong Heart


Corbin had his annual cardioligist appointment this past Friday and it was completely unremarkable. Which is great news. The arc in his aorta looks very smooth- as if there was never any surgical repairs to it. Our doctor did mention the blood flow through it looked rough so you can tell there is scar tissue there but it's not to the point to stress his heart. The thickness on the heart is completely normal, nothing like what it use to be thankfully. Same rules as usual- annual checkups, watch out for blue fingers & toes, complaining of chest pain, and/or tiring quicker than his peers when playing and there will be a follow-up procedure at some point, which we've always known, but for now it all looks great!

Sunday, November 15, 2009

Phenols Strike Again

I can't believe that I didn't mention this in my blog about Brian having a meltdown like I've never seen before at Corbin's birthday party. Maybe I did it subconciously because I knew it deserved it's own post.

On the ride up to Jokers, Brian drank a whole bottle of apple juice.

We stopped at a convenience store on the way up to get all the boys something to drink. I pumped the gas and Josh went in and bought juices. When I got back in the van I noticed he had bought them all apple juice. I mentioned it and he apologized, couldn't believe he didn't even really think about it. For those who haven't followed we have stopped giving Brian items that contain phenols in them- one being apples. Brian was already laughing and drinking and just so excited about his apple juice, I just decided I didn't want the tantrum that would ensue when I took the juice away. Corbin had two friends with us in the van and I didn't want Brian to be "weird" in their eyes.

So we had the huge tantrum at Jokers. Really, it wasn't something like I've seen since he was probably two. He was kicking, screaming, crying huge tears, and didn't even want me to comfort him- which is definitely not like him. He just could NOT come back down.

Not only did he have that tantrum but on the long drive home he fell asleep and then woke up screaming and I couldn't get him to calm down then either. I ended up climbing in the back and holding him on my lap for a little while. (I know not exactly legal but it was the only way we could get him to stop).

It wasn't until the next day when I was talking to Josh about it and it just hit me. He drank all that apple juice!! The first time he had anything apple since our trip to the apple orchard in September. I think we are really on to something here. It's amazing how food can affect people and how individual every single person is.

Monday, November 9, 2009

The Positive Side of the Party

I don't want to linger on the difficulties when it was really a wonderful day for the boy that it was all planned for- Corbin! He had so much fun and it was great seeing him interact with his new friends from school. He recieved a bunch of Bakugan toys, legos, science stuff, and learning books (all things he asked for) as well as some other great gifts! I think everyone agreed that laser tag was the most fun activity- as the grown-ups also played with the kids. One might argue that the grown-ups had more fun actually lol.

Some pictures to share Corbin's SEVENTH birthday!



{{socializing with friends.}}















{{bri stuffing his mouth with cupcake.}} {{spinning the wheel.}}














{{checking out his cake.}}















{{blowing out the candles.}} {{kung-fu fighting card.}}












{{bakugans and lego star wars video game. perfect.}}

Sunday, November 8, 2009

Brian and Jokers Do Not Mix
















It's been awhile since I've worried about bringing Brian to a crowded event. Sure he doesn't do wonderful at most events but he does okay, he's able to hold it together for quite a while.
Yesterday we went to Jokers for Corbin's birthday party. Jokers is like a Chuck E. Cheese only bigger and better. There is laser tag, a HUGE playhouse, a ferris wheel, bounce house, arcade games, and more. And it was crowded. Extremely crowded and extremely noisy.
First thing Brian ran into the playhouse. He really enjoyed it and was able to maneuver through even the trickiest areas. After a half hour in the playhouse our hostess brought the pizza. Getting Brian out of the playhouse was a struggle, but still not a meltdown. Everyone ate pizza and then Corbin started to open his presents. That was when the meltdown started. He was done eating pizza, he wanted to back in the playhouse. It was a full angry meltdown. Screaming and I couldn't get him to calm down. Usually I can squeeze him, sing to him, rub his back, something to calm him down. It wasn't happening. Josh's neice offered to bring him back in the playhouse and then he was good.
They came back just in time for the cake. Brian stuffed in one of his cupcakes I brought for him and then again just started screaming because I wanted him to wait for everyone. I again couldn't get him to calm down. I looked around and thought, the bathroom is probably the quietest place. I bring him in and he is still screaming and wriggling out of my arms like I'm abusing him. He gets away from me and runs full speed into a stall that was occupied. I pulled him out, apologizing to the occupant. I sit on the floor and finally get him to calm and ask him if he is ready to go back, he replies, "Ready".
We go back out and he waits with me nicely for me to hand out tickets and tokens to all of the kids. I then let him go into the playhouse again. While he is in there I decide maybe I'll go around and try to play some games. I just put in my first token into a game and I see Brian running around the grounds of the building SCREAMING, tears running down his cheeks, and holding his hands over his ears.
I run after him and he doesn't even want me to touch him. I am trying and trying to calm him and he is not having it. Everyone is staring. I carry him over to the bounce house and the attendant is trying to stop him from just running in and he isn't having it. I let her know that he has autism and he is extremely overwhelmed, she immediately steps away and lets me take over. We both climb into the bounce house.
Luckily, it was empty- so it was just the two of us. He threw himself onto the floor and started rolling around, kicking his feet, and just crying, not letting go of his ears. I actually lay on top of him and whisper in his ear. I could feel the tension start to leave his body. I rolled off of him and laid next to him and we just laid there in silence for a few minutes.
We got out and held hands and walked out. He was able to hold it together for the last 45 minutes of the party, after he got over that hump, but it was definitely not a place that I plan on bringing him to again any time soon.

Friday, November 6, 2009

Seven Years of Being A Mom


Today my oldest child turns seven. How does time fly? I ask him over and over to please stop growing but he is not heeding my advice. He tells me he loves to learn and learning makes him grow and he just can't stop learning. He is such a smart, sensitive, personable, funny, kind little boy. I am so proud of his growth and even though I ask him to stop growing I am looking forward to watching how he changes and grows.
Is a sad moment for me as we always have birthday breakfasts with blowing out candles and opening one of your presents. I had an anatomy and physiology lab this morning and had to leave my home around six am. Josh is under strict directions to follow through with our routine and take a lot of pictures. Hopefully he had a great morning!

Sunday, November 1, 2009

Halloween Snacks




I made these delicious Halloween snacks for Brian's party at school. By the way, his teacher asked all the parents to bring in gluten-free/dairy-free food. I was impressed!
I melted down Enjoy Life chocolate chips and dipped Ener G sesame seed pretzel rings into the chocolate. I then covered them with Halloween themed candy sprinkles- Betty Crocker brand.
Simple, easy, and very yummy!

Saturday, October 31, 2009

Help Me With My Research?



This is a call going out to all my fellow parents whom believe, actually who know, that vaccinations played a part in their child's autism. I have decided to do my big end-of-the-year paper for my English class to be based on the hypothesis, "Our current vaccination schedule is unsafe for some children and that it has played a part in the rise of autism".

For a good research paper I need to have resources that are unbiased- I'm going to be using fourteenstudies.org, which we all know is biased BUT they provide all of the key studies that researchers keep claiming show that there is no link between vaccinations and autism. So where the site is biased the information provided is not, in my opinion.

I'm also using the book, Healing the New Childhood Epidemics, by Dr. Kenneth Bock. Again, this book is biased as Dr. Bock truly believes in what we all believe. But he gives his information in the book very scientifically and matter-of-fact.

I really need one more good resource- that can't be contrived as biased at all. I've been searching the web but it is sometimes so hard to sort through the millions of sites there are. If anyone knows of a really good site please comment or email- hstclair@kvcc.me.edu.

Thanks!

Thursday, October 29, 2009

Sensitive Soul/Sensitive Stomach

I woke up this morning to hearing someone in the bathroom. I could hear Brian laughing in his bedroom so I knew it was Corbin. After quite a while I went in to check on him and I asked him what he was doing. He replied he was throwing up- I looked into the toilet and really only saw what I thought looked like spit. I told him to go lie down in my bed. I laid down with him and cuddled and said the line, "What's up kid?"

He was quiet and said, "I don't want to tell you this." I reiterated to him that he can tell me anything. He then told me that no one wanted to play with him yesterday at the afternoon recess. I asked him if he thought he was throwing up because he was sick or because he was worried no one would want to play with him today. He said, "Because of recess". I then thought- okay he's making himself throw up. This is not good. I mean, I remember pretending to be sick, but I was a tween/teen with all those hormones going on and my boyfriend of a day broke up with me or something ridiculous like that. But not when I was seven.

Later, when we decided he would go to school, he threw up again. He turned around and said, "This is so weird Mom. I usually throw up when I see something disgusting but I don't see anything disgusting, I just feel upset." I saw him throw up this time- sure, it was just the water that he had drank but it really didn't seem like he was forcing it to come up- that it just did. Corbin has always had an extremely immature gag reflex- he's thrown up at seeing smashed pumpkins outside, from driving past the town dump on a really hot, stinky day, from mixed up food scraped off into the garbage. And Corbin is also very sensitive. Words don't bounce off of him- he's too much like his Mama, I'm afraid.

Later when we were walking out the door Corbin looked up at me and said, "Mom, I think I need to go see a scientist." I asked why and he replied, "Maybe they can figure out why I throw up?" Poor thing. So, I'm hoping today goes better for him.

Thursday, October 22, 2009

What about the lasts?

As parents, we can't wait for all those firsts with our children. The first step, the first word, the first time they sleep through the night (my personal favorite). But what about the lasts?

Think about it. There is going to be a day when you can't scoop up your crying child into your arms because they are too heavy. There will be a time when your son won't want you to kiss him goodbye right in front of his friends. Don't you wish you would know when that exact last time was going to be, so you could cherish every second of it?

All parents concentrate on the firsts. But parents with children who have disabilities really linger on them. Why? Probably because we wait so much longer for them. We have to work so much harder for them. They don't come naturally. There is a lot of tears and heartache and sweat behind many of the firsts.
The upside to this battle? I get those lasts. I get them drawn out. No time soon will my kindergarten boy push his mama away. He lives for the physical contact. He craves the deep pressure hugs. I am his security blanket in this world that he has such a hard time figuring out.

This whole train of thought came to me this afternoon while Corbin, Brian, and I sat under a blanket on the couch reading books. Corbin was next to me while Brian was lying in my lap. I soon noticed his breathing had become very regular and he seemed a bit more limp. I leaned forward slightly to see his eyes closed and his mouth gaped open with a slight trace of drool in the corner of his lips. I looked at his sweet face. I traced the line of his cheek with my index finger. It had been awhile since he had fallen asleep on my lap. In fact I'm not sure if I could put a finger on the last time he had done so. So, I laid on that couch with him for a good thirty minutes. I wanted to cherish it. I don't know if it will be our last.

Sorry to Interrupt this Broadcast....

....but if I hear another Yes on 1 radio commercial I am going to throw up. I generally don't use this blog to talk about things other than my family and autism, but I need to get this off my chest. I hope I don't alienate any of my readers but I feel very strongly on this issue.

For those of you who are not Maine citizens, Question 1 is a ballot question regarding homosexual marriage. The Yes on 1 commercials are so dramatic about how parents are soooo upset that their child learned a family could have two moms! **GASP** Honestly, I would be very upset if my children did not learn about ALL types of family. I know several families that have homosexual parents and I feel horrible for thier children that their families wouldn't be accepted in our public schools. What is it going to do to our children to learn about families that are different? Oh no, is it going to make them more tolerant? More caring? More accepting? Shame on our schools for wanting our children to grow like that.

Also I just love the line "We're not anti-gay, we're pro-marriage". Are you listening to yourselves? How can you claim to be "not anti-gay" but you don't want ALL of our fellow citizens to have all of the same RIGHTS? You are going to look at a homosexual couple and tell them they can't get married, they can't be listed as one another's spouse for insurance, benefits at work, or more- but you're not anti-gay? You are not going to give them the simple pleasure to know they are looked at as the same as a heterosexual couple?

I think it's a sad thing that the United States, all 50 states, haven't allowed this to happen. I like to think our past of discrimination and violence would open up to a path of equality for all. Isn't that what this country is all about?

Back to your regular programming.....

Monday, October 19, 2009

One Function for Each Item Please

Today we decided to make a scarecrow for our festive holiday decor we have going on in our front yard. We tied rubber bands around the sleeves of a shirt and the legs of the pants. Corbin and Josh started filling up the pants with dry leaves while Brian and I decided to tackle the shirt. First Brian was holding the shirt up for me. First handful of leaves I put in he pulled the shirt up to his eyes and peered in, then looked at me, and then peered back in. The look on his face definitely made me giggle as I could tell that he was pondering this new activity.
He put in a few leaves and I left him while I piled some more leaves. I turn around to find him dumping out all the leaves. I reiterated to him what we were doing and he just started repeating "no, no, no", I let him off the hook and he rode his bike back and forth while we finished up the project. Even the finished product didn't grab his attention. He wasn't feeling the idea of shirts not being worn and being filled with leaves.
This is only one of many times that he has become upset because we used an item that he usually uses for one thing, but we are using it for another. It doesn't sit well with him. You can tell it really bugs him to the point where he just has to be done with whatever the new situation is.

Sunday, October 18, 2009

Whose in control of this life anyways?




I've been in school for nine weeks now. You would think by now I would've returned to some sense of normalcy within my family but I haven't. Not even close. I love my classes, I love what I'm learning, and I'm so excited to start a career in the occupational therapy field but I do not love the craziness, chaos, and complete lack of order that has happened in my home.

I'm completely exhausted all the time, yet of course have problems falling asleep at night. I forget things like putting an extra change of underwear in Brian's backpack. I completely lost Corbin's homework folder- I know I had it then poof it disapeared into thin air. My house is a wreck!! Josh and I just had our first "date night" in forever. My friends are complaining that I've dropped off the face of the planet. Everyone is picking out their clothes from the baskets of clean clothes rather than their bureaus.

I know this is normal and that I need to let some things go. Not every single aspect of my life can be "perfect" but I have issues with letting go of control. Hoping by the second semester this life of mine will feel like my own again.

Tuesday, October 13, 2009

Treating Autism with Marijuana

I was shocked when I saw this headline. I'm a natural, wannabe-hippie type of girl. But I'm also a very much law-abiding type of girl. A girl who has seen a lot of her friends become, lack of better words, "losers" because of marijuana. But I also completely understand the medical need for marijuana and when used correctly I think it has tremendous benefits.

That being said, I don't think I'll jump on this bandwagon any time soon but I did find this a very interesting and very thought-provoking piece! I look forward to hearing your opinions!

He has autism and a medical marijuana license.
By Marie Myung-Ok Lee | Double x

Question: why are we giving our nine-year-old a marijuana cookie?

Answer: because he can’t figure out how to use a bong.

My son J has autism. He’s also had two serious surgeries for a spinal cord tumor and has an inflammatory bowel condition, all of which may be causing him pain, if he could tell us. He can say words, but many of them—”duck in the water, duck in the water”—don’t convey what he means. For a time, anti-inflammatory medication seemed to control his pain. But in the last year, it stopped working. He began to bite and to smack the glasses off my face. If you were in that much pain, you’d probably want to hit someone, too.

J’s school called my husband and me in for a meeting about J’s tantrums, which were affecting his ability to learn. The teachers were wearing tae kwon do arm pads to protect themselves against his biting. Their solution was to hand us a list of child psychiatrists. Since autistic children like J can’t exactly do talk therapy, this meant sedating, antipsychotic drugs like Risperdal—Thorazine for kids.

Last year, Risperdal was prescribed for more than 389,000 children—240,000 of them under the age of 12—for bipolar disorder, ADHD, autism, and other disorders. Yet the drug has never been tested for long-term safety in children and carries a severe warning of side effects. From 2000 to 2004, 45 pediatric deaths were attributed to Risperdal and five other popular drugs also classified as “atypical antipsychotics,” according to a review of FDA data by USA Today. When I canvassed parents of autistic children who take Risperdal, I didn’t hear a single story of an improvement that seemed worth the risks. A 2002 study specifically looking at the use of Risperdal for autism, in the New England Journal of Medicine, showed moderate improvements in “autistic irritation”—but if you read more closely, the study followed only 49 children over eight weeks, which, researchers admitted, “limits inferences about adverse effects.”

We met with J’s doctor, who’d read the studies and agreed: No Risperdal or its kin.

The school called us in again. What were we going to do, they asked. As a sometimes health writer and blogger, I was intrigued when a homeopath suggested medical marijuana. Cannabis has long-documented effects as an analgesic and an anxiety modulator. Best of all, it is safe. The homeopath referred me to a publication by the Autism Research Institute describing cases of reduced aggression, with no permanent side effects. Rats given 40 times the psychoactive level merely fall sleep. Dr. Lester Grinspoon, an emeritus professor of psychiatry at Harvard Medical School who has been researching cannabis for 40 years, says he has yet to encounter a case of marijuana causing a death, even from lung cancer.

A prescription drug called Marinol, which contains a synthetic cannabinoid, seemed mainstream enough to bring up with J’s doctor. I cannot say that with a few little pills, everything turned around. But after about a week of playing around with the dosage, J began garnering a few glowing school reports: “J was a pleasure have in speech class,” instead of “J had 300 aggressions today.”

But J tends to build tolerance to synthetics, and in a few months, we could see the aggressive behavior coming back. One night, I went to the meeting of a medical marijuana patient advocacy group on the campus of the college where I teach. The patients told me that Marinol couldn’t compare to marijuana, the plant, which has at least 60 cannabinoids to Marinol’s one.

Rhode Island, where we live, is one of 13 states where the use of medical marijuana is legal. But I was resistant. My late father was an anesthesiologist, and compared with the precise drugs he worked with, I know he would think marijuana to be ridiculously imprecise and unscientific. I looked at my son’s tie-dye socks (his avowed favorite). At his school, I was already the weirdo mom who packed lunches with organic kale and kimchi and wouldn’t let him eat any “fun” foods with artificial dyes. Now, I’d be the mom who shunned the standard operating procedure and gave her kid pot instead.

But then I thought back to when J was 18 months old. We were vacationing on the Cape, and, while he just had the slightest hitch in his gait, I was sure there was something wrong. His pediatrician laughed. I called back repeatedly until a different doctor agreed to see us. J was taken into emergency surgery, to remove a tumor that was on the verge of inflicting irreparable damage. Sometimes, you just have to go with your gut.

And yet, I still hesitated. The Marinol had been disorienting enough—no protocol to follow, just trying varying numbers of pills and hoping for the best. Now we were dealing with an illegal drug, one for which few evidence-based scientific studies existed precisely because it is an illegal drug. But when I sent J’s doctor the physician’s form that is mandatory for medical marijuana licensing, it came back signed. We underwent a background check with the Rhode Island Bureau of Criminal Identification, and J became the state’s youngest licensee.

Having a license, however, is different from having access to marijuana. While California has a network of “compassion centers,” basically pharmacy-like storefronts that provide quality product from registered growers, Rhode Island’s Republican governor has consistently vetoed that idea, in spite of the local stories of frail patients being mugged in downtown Providence as they go in search of pot. We weren’t about to purchase street marijuana, which could be contaminated with other drugs, so we looked into growing the pot ourselves. But by law, medical marijuana must be grown indoors, and it requires a separate room with a complex system of hydroponics, fans, and precise lighting schedules. (This made me wonder how much THC was actually in the spindly plants the high school goofballs I knew grew in their closets).

The coordinator of our patient group introduced us to a licensed grower. A recent horticulture school graduate, he’d figured out how to cultivate marijuana using a custom organic soil mix. His e-mail signature even quoted Rudolph Steiner. The grower arrived at our house with a knapsack containing jars of herbs. We opened the jars to sniff the different strains of “bud”—Blueberry, which did smell fleetingly of wild blueberries, and Sour Diesel, which had a rich, winey scent. The grower also had cured some leaves for tea, and he brought a glycerine tincture, a marijuana distillate in olive oil (yes, organic), cookies (ditto), and a strange machine that looked, fittingly, like a lava lamp. Basically an almost-bong, this vaporizer heated the cannabis without producing carcinogenic smoke.

For most adults, the vaporizer is the delivery method of choice, as it allows the patient to feel the effects immediately and adjust the dose precisely. J gamely put his mouth on the valve and let us squeeze a little smoke into him. It shot right back out his nose. He looked like Puff the Magic Dragon.

The grower left us with a month’s worth of marijuana tea, glycerine, and olive oil—and a cookie recipe. No buds. We paid $80. (Granted, we haven’t checked up on how much a nickel bag costs these days.)

We made the cookies with the marijuana olive oil, starting J off with half a small cookie, eaten after dinner. J normally goes to bed around 7:30 p.m.; by 6:30 he declared he was tired and conked out. We checked on him hourly. As we anxiously peeked in, half-expecting some red-eyed ogre from Reefer Madness to come leaping out at us, we saw instead that he was sleeping peacefully. Usually, his sleep is shallow and restless. J also woke up happy.

But in a few days, J decided he didn’t like the cookie anymore and smashed it with his fist. We brewed him the tea, which smelled funky and grassy. He slurped it down, but without much effect. Many of the psychoactive compounds in marijuana are fat soluble, so I added a dropperful of the oil that we used in the cookies. That made him sleepy-looking but still aggressive. It became clear that when J ingested pot orally, it took two hours to see the results, and by then there wasn’t much we could do to dial the dose up or down. The grower visited us again to give J another try at the bong, with little success.

But it was also possible that J needed a little time to get off the Marinol. After two weeks, we noticed a slight but consistent lessening of aggression. And he wasn’t nervously chewing holes in his shirts.

We are now a month or so into this, and it’s still too early to know if we can find a dose and mode of delivery that gives us consistent results. Even if J could learn to use the vaporizer, it costs $600, and would leave the house reeking of pot. And we don’t want to get too dependent, because of the inherent limitations. Though we’d love to calm J with pot so that he can visit his grandmother in Minnesota, bringing a controlled substance on the plane isn’t the best idea.

But since we started him on his “special tea,” J’s little face, which is sometimes a mask of pain, has softened. He smiles more. For the last year, his individual education plan at his special-needs school was full of blanks, recording “no progress” because he spent his whole day an irritated, frustrated mess. Now, April’s report shows real progress, including “two community outings with the absence of aggressions.”

The big test, so far, has been a visit from Grandma. The last time she came, over Christmas, J hit her during a tantrum. This time, we gave him his tea, mixing it with goji berries to mask any odor, although it occurs to me that my mother, a Korean immigrant, probably doesn’t even know what pot smells like (and it actually smells a lot like ssuk, a Korean medicinal herb). She remarked that J seems calmer. As we were preparing for a trip to the park, J disappeared, and we wondered if he was going to throw one of his tantrums. Instead, he returned with Grandma’s shoes, laying them in front of her, even carefully adjusting them so that they were parallel and easy to step into. He looked into her face, and smiled.

When I think of the embarrassment I may feel if my colleagues see this article, or teachers or parents at J’s school, or his less open-minded doctors, I pause. Although I occasionally smoked pot as a teenager (believe me, in northern Minnesota, there was not much else to do), now that I’m a law-abiding adult, all the scary anti-drug messages are flashing in my brain. But when I researched cannabis the way I did conventional drugs, it seemed clear to me that marijuana at the very least wouldn’t harm J, and might help. It’s strange, I’ve come to think, that the virtues of such a useful and harmless botanical have been so clouded by stigma. Even the limited studies that have been done suggest marijuana’s potential as an adjunctive therapy for cancer. Marijuana, you need some rebranding. Maybe a cool new name.

Meanwhile, in treating J with pot, we are following the law—and the Hippocratic oath: primum, non nocere. First, do no harm. The drugs that our insurance would pay for—and that the people around us would support without question—pose real risks to children. For now, we’re sticking with the weed.



Why I Give My 9-Year-Old Pot, Part II

He has autism and terrible pain. Marijuana is taming his demons.

Last spring, I wrote about applying for a medical marijuana license for my autistic, allergic 9-year-old son, J., in hopes of soothing his gut pain and anxiety, the roots of the behavioral demons that caused him to lash out at others and himself. After reading studies of how cannabis can ease pain and worry, and in consultation with his doctor, we decided to give it a try. A month into daily cannabis tea and mj-oil cookies (my husband discovered his inner baker), I reported, we both felt that J. seemed happier. But it was hard to tell. He’d have a good morning, then at dinner he’d throw his food. Still, we did notice that when he came home from school with stomach pain (he wasn’t getting any supplemental cannabis there), he’d run to the kitchen and demand his tea and cookie. As if he knew this was the stuff that dulled the hellish gut pangs.

How is J. doing now, four months into our cannabis experiment? Well, one day recently, he came home from school, and I noticed something really different: He had a whole shirt on.

Pre-pot, J. ate things that weren’t food. There’s a name for this: pica. (Pregnant women are known to pica on chalk and laundry starch.) J. chewed the collar of his T-shirts while stealthily deconstructing them from the bottom up, teasing apart and then swallowing the threads. By the time I picked him up from the bus stop after school, the front half of his shirt was gone. His pica become so uncontrollable we couldn’t let him sleep with a pajama top (it would be gone by morning) or a pillow (ditto the case and the stuffing). An antique family quilt was reduced to fabric strips, and he even managed to eat holes in a fleece blanket—so much for his organic diet. I started dressing him only in organic cotton shirts, but we couldn’t support the cost of a new one every day. The worst part was watching him scream in pain on the toilet, when what went in had to come out. I had nightmares about long threads knotting in digestive organs. (TMI? Welcome to our life!)

Almost immediately after we started the cannabis, the pica stopped. Just stopped. J. now sleeps with his organic wool-and-cotton, hypoallergenic, temptingly chewable comforter. He pulls it up to his chin at night and declares, “I’m cozy!”

Next, we started seeing changes in J.’s school reports. His curriculum is based on a therapy called Applied Behavioral Analysis, which involves, as the name implies, meticulous analysis of data. At one parent meeting in August (J. is on an extended school year), his teacher excitedly presented his June-July “aggression” chart. An aggression is defined as any attempt or instance of hitting, kicking, biting, or pinching another person. For the past year, he’d consistently had 30 to 50 aggressions in a school day, with a one-time high of 300. The charts for June through July, by contrast, showed he was actually having days—sometimes one after another—with zero aggressions.

More evidence: the bus. For the last few years, the arrival of J.’s school bus had been the most traumatic and unpredictable moment of our day. J. has run onto the bus and hit the driver in the face. He has scuffled with the aides and tried to bite them. His behavior brought out the worst in people: One bus monitor (we joked that her personality better suited her for a job at the local prison) seemed to dislike all the kids but treated him with particular contempt, even calling him names, once in front of us.

But the summer brought a new set of aides and driver. It hit me that these folks knew only “Cannabis J.”—a sparkly-eyed boy who says hi to them each morning, goes quietly to his seat, even tries to help put his snap-on harness on.

One day, J.’s regular aide was sick, and a lady with a wacky smile lovingly escorted J. off the bus. There was something familiar about her; once I superimposed a hateful frown on her face, I burst out to my husband, as the bus snorted away, “It was her, wasn’t it?” We laughed as J. looked on. “Funny!” he said.

There’s a twist to the happy marijuana story, though. While the cannabis has eased J.’s most overwhelming problem, his autism has become more distinct. As the school data show, his aggressive behavior is far less frequent, but his outbursts—vocalizations that include screams, barking, yips of happiness—remain. When J. was in his dark phase, we spent our time out of sight, out of mind, inside our house with a screeching, violent, food-and-dish-flinging J. The sounds were contained by double-paned windows (when they weren’t broken). Now, within our family, we’ve reached a lovely homeostasis: household goods unbroken, our arms and J.’s face unscratched. But as we venture outside to play in the yard, take after-dinner walks, or ride with J. on our tandem bike, we can see that the people in the neighborhood know our family is different, and that this is not always to their liking.

Our closest neighbors (on one side, we could probably pass them a pie from our kitchen) have always been understanding. But on the next street, a man stops playing ball with his son when he sees us, and pushes his boy into the house as we approach, turning his back on J.’s cheery “hel-llooo!” He is the man we suspect yells at us—from behind other houses, so we can’t see him—when J. sometimes vocalizes a bit loudly outside. Then there’s the mom with the son about J.’s age (who, incidentally, sounds exactly like J. when he screams). She won’t make eye contact when we pass, and pointedly ignored a party invitation from us. I’ve also heard, from behind a fence of a family who stares at us but never says hi, “Oh, that’s J.”

And so sometimes we feel a bit the victims of a 21st-century shunning. In the larger context, however, these are small annoyances from small people. The chair of my department invites J. to her yard so he can play in her outdoor pool and lets him vocalize to her neighbors, who do not complain. A mini-gang of too-cool teen boys walks by our short fence after school and always greets J. sincerely, as he calls out adoringly, “Hi, hi, HIIIIIIIIII!” I am grateful that the cannabis has given J. the chance to get out and experience life. If it sometimes punches him back, it also offers him flowers.

I don’t consider marijuana a miracle cure for autism. But as an amateur herbalist, I do consider it a wonderful, safe botanical that allows J. to participate more fully in life without the dangers and sometimes permanent side effects of pharmaceutical drugs; now that we have a good dose and a good strain. (“White Russian”—a favorite of cancer patients, who also need relief from extreme pain). Free from pain, J. can go to school and learn. And his violent behavior won’t put him in the local children’s psychiatric hospital—a scenario all too common among his peers.

A friend whose child was once diagnosed with autism, but no longer (he attends school at his grade level and had three developmental assessments showing he no longer merits the diagnosis), wanted to embark on a kind of karmic mission to help other children. After extensive research, she landed on cannabis the way I had. “It has dramatic implications for the autism community,” she says, and it’s true. We have pictures of J. from a year ago when he would actually claw at his own face. None of the experts had a clue what to do. That little child with the horrifically bleeding and scabbed face looks to us now like a visitor from another world. The J. we know now doesn’t look stoned. He just looks like a happy little boy.

And cannabis still can surprise us. We worried that “the munchies” would severely aggravate J.’s problems with overeating in response to his stomach pangs. Instead, the marijuana seems to have modulated these symptoms. Perhaps the pain signals from his stomach were coming through as hunger. J. still can get overexcited if he likes a food too much, so sometimes when he’s eating my husband and I leave the room to minimize distractions. The other day, we dared to experiment with doenjang, a fermented tofu soup that he used to love as a baby. The last time we tried it, a year ago, he’d frisbeed the bowl against a tile wall. (Oh, smelly doenjang soup and the million ways it can make a mess.)

We left J. in the kitchen with his steamy bowl and went to the adjoining room. We waited. We heard the spoon ding against the bowl. Satisfied slurpy noises. Then a strange noise that we couldn’t identify. A chkka chkka chkkka bsssshhht doinnng! We returned to the kitchen, half expecting to see the walls painted with doenjang. Everything was clean. The bowl and spoon, however, were gone.

J. had taken his dishes to the sink, rinsed them, and put them in the dishwasher—something we’d never shown him how to do, though he must have watched us do it a million times. In four months, he’d gone from a boy we couldn’t feed to a boy who could feed himself and clean up after. The sight of the bowl, not quite rinsed, but almost, was one of the sweetest sights of my parental life. I expect more to come.

Thursday, October 8, 2009

Doesn't the School's Policies Apply to Everyone??




















Today, I was standing in line at the school to sign out my children. They dismissed the walkers and I could hear Brian from all the way at the end of the hallway, crying. Even though I've never picked him up crying before, I still didn't feel alarmed. I know that he sometimes is very sensitive and has a hard time with some things. But I do have a problem with him seeing me in line and saying "Mama" in between tears and his ed tech being so unaware of him that she is still pulling him into the cafeteria (they were holding hands) while he is trying to pull towards me. I silently watched for about ten seconds, waiting to see if she'd actually take time to "listen" to him- he may not be speaking his needs but his body language was certainly showing he knew I was right there in the hall and he didn't want to go in the cafeteria. I shouted her name and she looked up in shock and said, "Oh Brian, there's your Mom" before letting go of his hand.

He ran to me and gave me a huge hug. Heat was generating off of him. I asked her why he was crying. She replied, "I don't know- he's just been cranky all afternoon". I said, "Well he feels really warm". She replied, "Yeah, maybe he's not feeling well, he's had that stuffy nose" (which he has had for a couple days now). I didn't say anything else and just left.

We came home and I settled him on the couch with Wall-E and a blanket and he's been lying there ever since. I took his temperature and it's just a low-grade fever- about 99.6....BUT if Corbin or any other student at that school said, "I don't feel well", they would be sent to the nurse and she'd take their temperature. If it was even a little bit high the parents would be called. I know the school's policies. So, because Brian can't verbally express that he isn't feeling well that policy shouldn't be followed?

Maybe I'm feeling overprotective- Josh often tells me that no school anywhere could hire an ed tech that I would fully approve of. But I'm feeling aggravated about it, none the less- probably even more so because I think I'm coming down with a cold as well.

Wednesday, October 7, 2009

The Elephant














I was read a wonderful children's book the other day, The Blind Men and the Elephant. This story is a classic, yet I had never heard it before. It has been written and rewritten by many different authors.

The story goes that an emperor aquires an elephant and six blind men decide they want to go "see" the elephant because they have never touched one before. Each blind man touches a different part of the elephant, so each one thinks the elephant is like something different than the others. They begin to fight about it and the emperor intervenes and tells them that they each only know about one part of the elephant, not the whole animal.

Obviously, this book is about not knowing somebody because of one thing about them. We were regarding it in my occupational therapy classes as just because we know someone has a disability does not mean we know everything about that person.

I'm definitely buying this to add to my own children's library.

Sunday, October 4, 2009

Final Horse Show

Yesterday was the End of the Year Horse Show at Freedom Riders. Brian hasn't been able to attend his weekly riding lesson since school has started- it just didn't fit into our schedule and being almost the end of the season they couldn't change his time slot. Yet, of course, they allowed him to participate in this last show.
Since it had been a few weeks since we have been to the stables I was a little bit apprehensive about how he would do. No need to worry. As soon as we pulled in, his face lit up, and he couldn't get on his horse quick enough. He was lucky, too, to still have his favorite horse to ride, Xanadu.
Seeing him climb on that horse and beam this incredible smile out to the audience brought tears to my eyes. I love that he has an activity that he gets so much joy from! Not to mention the fun that he realizes he is having he is also working on his balance, core strength, receptive language, expressive language, fine motor skills, gross motor skills, confidence, and more.






Friday, October 2, 2009

High Hopes Clubhouse

Yesterday, in my Psychology class, I attended a presentation on the High Hopes Clubhouse in Waterville, Maine. The name is certainly accurate as it definitely raised my hopes about different opportunities given in Maine.

Clubhouses follow international standards. They consist of minimum staff and members- individuals with mental illnesses that decide on their own to seek these services. They are completely run by their members. The staff and members work together as co-workers. They help with the taking care of the house, meal preparation, paying bills, doing paperwork, giving orientations, etc. All the tasks in the home are meaningful.

The Clubhouse's main goal is to help their members return to work or even get their first job ever! Yet, they don't push it if their members are not ready to be in a social environment. It's completely each individual's decision to decide when they are ready. The Clubhouse helps their members attain employment, the staff trains on the job so they can teach the members before they start. The staff will guarantee the employer to cover the member's spot if they needed to be hospitalized. The Clubhouse also offers after-work-hours social meetings and parties. They help with transportation to work. They help with housing. After the seminar I felt almost like there wasn't anything they wouldn't offer!

There are actually two Clubhouses in Maine right now- the other is in Augusta and is called the Capitol Clubhouse.

Tuesday, September 29, 2009

The Phenol Effect

Two months ago we decided to remove phenols as much as possible in Brian's diet and see if there would be any effect.
It definitely seemed to help with his mood swings he was having at the time as well as sleep. I was having many nights in a row of non-interrupted sleep. Bliss!
This past Saturday we decided to go apple picking. Apples are very high in phenols and also one of the food items Brian was previously "addicted" to. I decided to just let him have some apples- it couldn't be that bad, right?
Well Saturday, Sunday, and Monday Brian had an apple each day as well as a glass of apple cider. All three nights he has been up for hours at a time and yesterday he had huge, tears running down his face, meltdowns for simple things that don't usually unnerve him- like coming in from outside, putting his stuff away, etc.
I hate to see him so upset like that but it's nice to know that steps I take are working. Back to no phenols!

Wednesday, September 23, 2009

First Lost Tooth



Brian lost his first tooth last week!

The bummer of it all is I have no idea when or where he lost it.

Don't worry the tooth fairy still came but I don't have my baby's first tooth to put away with all his little treasures.

It's funny how you don't think about these little things until they happen but I got to wondering if I'd ever get one of his little baby teeth to save?

At the stage where he is now he wouldn't know to bring me the tooth or even tell me if it was wiggly.

Oh and by the way, Corbin is quite jealous because he hasn't lost his first one yet!!