Just Imagine.

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.

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

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

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.

"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

No words needed.  Just sit back and enjoy.

Overdid the Therapy.

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.