Thursday, May 31, 2012

That's What I Wish.

Brian was lying on the couch watching Disney Jr. as I lay there rubbing his back and giving him deep compressions and ear pops.  Yes I was doing all of those things at once, takes years of practice of calming a boy after sensory overload.

We were in the middle of a cook-out at a house that we had never been to before.  The hostess was kind enough and knowledgeable enough (being an ed tech with children with special needs for years) to offer us free reign of her home, "whatever you need for him to be comfortable."

I wasn't happy with sitting in the middle of the livingroom as the party continued on outside.  I felt a tiny bit ridiculous as it was a new group of people that I was trying to make a connection with and instead I felt like we were ostracizing ourselves once again.  Autism is a funny thing in that it makes the whole family become secluded, not just the individual that needs the quiet and routine to feel at peace.

I honestly was feeling sorry for myself.  I felt like I shouldn't have come, I had made it known that this was going to be a difficult situation.  I was upset because on top of the sensory overload Brian was experiencing he also needed to have a bowel movement and that was making him more cranky. I couldn't leave him alone in the house, like I would've been able to do with most other 8-year-olds, because I was worried he was going to roam into the bathroom and have the said bowel movement and then clean himself on the walls, towels, and whatever else he could get his hands on. Because that's the reality of where he is still at with bowel movements.  Generally he won't have a bowel movement anywhere but home but I wasn't going to rely on that.

Then Corbin walked in and plopped himself in front of the television.

 I looked at him and said, "Corbin, please go outside and play.  We're at a cook-out, you do not need to sit in front of the television."

"But Brian is!!"

"Brian is having a hard time and he needs this to just chill for a little bit.  We'll be back out in a minute."

"It's not fair!  I wish I had autism!," he muttered under his breath as he stomped his feet back out towards the door.

It's not fair.  None of it is fair.  We've had this argument time and time and time again and my heart doesn't stop breaking for both of them, and for myself time and time again.  Again and again I feel like I'm failing my children because I can't always see autism as a blessing like I see other parents doing.  Again and again I find myself wishing it away.  And again and again I feel like I'm leaving Corbin behind to figure things out for himself as I struggle to make the world an easier place for Brian.

Does this get easier?  I just feel like I continue on through this cycle of acceptance and grieving over and over again, never really finding myself at the place that I am okay that this is my life.  Go ahead and criticize me because of some stupid idea you have that if I don't fully accept autism that means I don't love my child.  Any one who knows me and my boys would never question how much I love them.  My love for them does not stop me from just wanting and wishing that we could have a life where we could go to a cook-out and I could sit back, have a drink, make new friends and laugh, and watch my boys running and playing with the other children.  Just one afternoon with my whole family and not have to worry and be on my guard and have to watch my child every second of the get-together.  That's what I wish.

Monday, May 28, 2012

What is Autism?

"What?? He can't be 8! That's impossible."

That's what I heard a neighborhood boy exclaim after asking Corbin how old Brian was.

I seem to find myself in these spots often and I inched closer to the open window to hear what Corbin would respond.

"Yes he is 8!  It's because he has autism!  AUTISM!" yelled Corbin who seems to be getting more and more angry about having to explain it over the years.

"Autism?  I don't know what that is," replied the little boy.

"It's just something he has, okay?  It means that when he is a kid, he acts like a baby.  When he's a teenager, he'll act like a kid.  When he's a grown-up, he'll act like a teenager.  And when he's finally a really old, old person he'll act like a grown-up."

I had never heard Corbin explain autism like that before and my heart broke a little not really knowing what Brian's progress will look like over the years.  Corbin obviously believes his brother will obtain full speech abilities and independence, and I hope for that as well.  However, the years of autism and slow progress sometimes make me feel like a cynic.

I didn't interject but later Corbin came in and asked if I heard the conversation.  I told him I did and he asked me, "Was that right Mom?  Is it like he is a baby now?"

I kissed his forehead and told him I was proud of him for taking the time to try to explain autism to his friends and then I said, "I know Brian can't talk very much and that is sometimes why he seems like a baby.  But we also know that he can add any three numbers together, spell really long words, remembers the directions to places even if he has only been there once, and can build some really awesome train tracks.  Do you think babies can do those things?"

Corbin smiled and kind of laughed, "I didn't even think of those things!  You're right Mom!  He's not like a baby at all, he is really smart with some things."

Yes, he really is.  Both of my boys really are.

Sunday, May 6, 2012

Most Improved Student

Brian was chosen as one of his school's most improved students.

Wow.  I was speechless when I pulled this out of his bag a couple of weeks ago.

Initially I was so proud of my little boy.  Since December he has become a pro at addition- now adding up to three numbers at a time.  He is writing words from memory, reading more words, and using much more language than he was previously.

Then, I started to become very proud of his school.  Proud that they made the changes I fought for so he could make this growth.  Proud that they were using new curricula with him that was making a huge difference in the way he was learning.  Proud that they started realizing his potential and pushing the academic stuff.

And so extremely proud that they chose my little boy who is "functionally non-verbal" and has "moderate-to-severe autism" to be a most improved student.  So proud they could look past those labels and see his growth even if it's not the growth of his typical peers.  His growth may not be typical but it has taken a lot of hard work on his part and I don't think there is anyone that could deserve it more.

Thank you!! You made one extremely proud mama.

Brian will be honored along with many other students from across the state of Maine on the field at a minor league baseball game.  That will be a whole other post!