Monday, January 30, 2012

You May Be Obsessive-Compulsive If...

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, January 16, 2012

It Could Be YOUR Child: #TeamAmelia

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

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

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

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

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

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

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

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

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

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

This person who is the best snuggler in the world.

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

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

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

Here is Amelia's mothers original account of the story.  The blog post that started it all:

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

Sunday, January 15, 2012

School District Adds Half A Million to Special Education

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

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

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

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

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

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

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

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

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

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

And that makes me feel really good.

Saturday, January 14, 2012

Artistic Interpretation

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

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

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

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

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

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

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

Friday, January 13, 2012

Successful Reasoning

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

Gross, huh?

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

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

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

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

He was quiet and I allowed the pause.

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

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

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

He replied, "Yes."

And off he went to the bathroom.

Thank god, because he was starting to really stink.

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

Wednesday, January 11, 2012

Just Another Side Effect

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

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

I had read...

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

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

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

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

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

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

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

Sunday, January 8, 2012

I Wanna Be Sedated.

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

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

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

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

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

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

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

I laughed.  Seriously, laughed out loud.

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

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

Waiting around for stitches.
She left, shocked, not saying a word.

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

We waited for hours to be sedated.

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

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

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

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

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

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

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

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

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

All of that for this little scar.

Tuesday, January 3, 2012

What Did You Do On Your Christmas Vacation?

Today was the boys' first day back to school.

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

And I wondered what Brian would say if he could.

I think it would go something like this,

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

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

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

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

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

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

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