Monday, August 22, 2011

I hate autism.

"I hate autism.  I effin' hate it."

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

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

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

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

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

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

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

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

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

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

Yup, I hate autism.  End of story.


Cwotton said...

Hi Heather, I so enjoy reading your posts because yes I can relate. When we were at splashtown they would not let me slide down the pirate slide with Ryan, well needless to say he got stuck and stood up so high up he would have jumped I literally pushed the man out of the way and slid down scooped up Ryan and proceeded to exit pirate land. A man who worked there approached me and began to lecture me saying I was not allowed to go down the slide. I told him it was either I helped my son or would be suing his ass for letting him fall off and get hurt. It can be so hard for Emily. I think it was so much easier to manage Ryan in places like that when he was smaller. Now I can barely control him. He is so strong. I hate autism as well and hope that it does get better, but it is sometimes hard to believe. xoxo

Tilly Tatas said...

We're in the early stages of understanding autism as Nipper was only diagnosed this year. Someone told me that it doesn't necessarily get better but it gets different. I'm hoping that our 'different' means easier to understand and manage!

Heather said...

Hi Christina!  First of all, thanks for reading my blog!  Secondly, I love when people can relate.  It makes the hardest days feel easier.  

Brian could go down the slides fine...but as it was just me watching him, if I went down first he'd be sure to have a tantrum at the top of the slide while he waited for his turn or if he went first, then he would take off by the time I could get to him.  Fun...I wrote the amusement park today actually to bring to their attention that that particular rule makes it hard for guests with special needs to enjoy the park.

I think you're right that it's because they are getting bigger :/  Brian is getting stronger too and heavier- so much harder for me to pick him up and carry him (though I do often).   His legs hang down past my knees now when I pick him up.  

I'm glad you hate autism too (well not really, but you know what I mean).  When I say it I worry people think I'm thinking negatively about Brian- but I'm not at all- it's strictly AUTISM...

Heather said...

Well everyone with autism is differently- so please don't let my story scare you!!  Some things are so much easier with Brian and it really was an "off" day for him too...not every day is that bad.   But if communication skills and social pieces don't come a long way and your child just keeps getting larger- it does become harder to handle their behaviors :/

tania pesce said...

I'm sorry Heather, my heart goes out to you. You are such an amazingly strong woman deep breaths (and lots of wine) to get through those "off" days.

Christina said...

(((Hugs)))  i'm sorry you had a rough day.  I don't see anything wrong with your thought to take a vacation without him.  It's probably less stressful for him too.  I'm so glad that Corbin is such a good and understanding brother!

Heather said...

I think that's what I forget sometimes Christina...I feel like I'm excluding him or hurting him, but in all reality he probably would always choose staying home than going somewhere and getting out of routine.

Flannery said...

I can really relate, and I'm sorry it was such a rough day.  I keep waiting for the "gets better" part to happen too.  I'd like to kick autism's little friend, ADHD, in the butt right along with it.

Dixie Redmond said...

I have a Spashtown story, too from years ago.    I've found over the years that Splashtown is too. much. stimuli.    I understand your wanting to go there and I understand the pain in watching your other child do the big kid stuff by himself.    I have a child who does not have autism, too.    

But over the years (my son is 18) I've found that I had to accept that some things my other son wanted to do weren't for my child with autism.  So we get a babysitter for him and we take our child who does not have autism to the places with long lines and blinking lights.   On another day we take our child with autism to something he really enjoys.   

But of course this means paying for babysitters, if you can find the money OR the babysitters.

Another mom from Maine

clear123 said...

you put your kid in a stupid positi0n and then threaten to sue. you're a piece of work. beware everyone on the jury is not in sync with your egomania.

Heather said...

I won't deny that it may have been an unsafe situation but one can't forsake me for trying to have a "typical" family outing.  As a single mom it's hard to plan things with just my older child and I dream that I can include Brian in our family activities. So sue me.

Oh speaking of sueing, I can deny that I ever even thought about sueing...or that I wrote about it.  Did you read the post above?  Or another post?  I'm confused.

Thanks for reading- love your insight (dripping with sarcasm).

AutismWonderland said...

I can't believe, I missed this one.  But I know what you mean.  We experienced something similar while on vacation over the  summer.  Going someplace that supposed to be relaxing or fun, turns out to be a lot of work.  I've never been to a splashtown but do they have the disability pass like in Disney?  Maybe next time inquire.  I also started using social stories with my son - they are helpful.  But all kids are different.  And maybe next time, Brian will do better :)  {HUGS}

Rhonda Logan said...

I hate autism too.  I shout it from the rooftops often.  It has sucked the life out of our family in more than one occasion.  I still don't know how we've managed to keep moving after so long.  Sometimes, a coma sounds like a great vacation. Even jail.  

My autistic son is a teenager(16).  As is my (nt)daughter (14).  We've never ever ever ... ever, left him out of family trips.  Unless there was an event at my daughters school... one of us will stay behind (the crowds are too much for him. as is the waiting.. and dead time before whatever it is, starts.)  Vacations, he goes.  Typically, I allow my daughter to bring a friend.  This way, she's not having to wander around by herself.  If things are going ok.. we join them.  If not, we'll sit back (as you did) and keep him occupied while she has fun with her friend.  

I don't think it ever gets easier.  Ever.  I learned very quickly (behavioral/aggressive son) to plan BETTER.  Especially when it comes to sensory overload.  When you have good planning, and good prepping (we prep him whenever we go ANYWHERE.. he knows where we're going, how long we're going to stay, and what is coming next. always.)  Once we figured that out.. our family trips have become much easier. And, MUCH more fulfilling for everyone.  Also, not being so concerned with what other people are thinking, or the looks that you're getting helps too. ( I'm good and tuning people out. ) We've made 3 trips (by plane) to CA and back (to Ohio) and it was spectacular.  

It's a hard reality when you realize you can't do thinks typical families can do.  We tried camping once.  It was complete torture for our son.  When he's out of his element, no water park would ever be successful. Especially the lines.

Good job bringing it to the attention of the park with the letter.  I know here in Ohio, the amusement park (Cedar point) offers a special needs DAY. Where the kids can come and have the park nearly to themselves.  Lines are shorter etc.  Still my son would NEVER make it there.. even if he were there Again, sensory overload.  Change will never happen unless people do what you did.. write letters.  Kids need to be accommodated.     

Heather St. Clair said...

I now realize your response was in fact a response to my commenter's post.  I still find it rude and uncalled for.  Christina didn't actually sue but she was being honest about a situation that was scary for her and her family and I respect her for sharing.  I'm sorry that you obviously don't understand what it is like to be in that position.

Heather said...

Thank you so much for sharing your thoughts and story Rhonda!  It's so powerful to know we're not alone.  Planning is key- for sure!  I have taken Brian on a plane twice now and it was very successful and it was largely in part because of our social story and headphones and lollipops and iPad and all those things we planned and set up prior to the trip.    I probably could've done a bit more planning and prepping for this particular trip.    We learn from our mistakes though.

A special needs day would be amazing..hmm..I wonder if I could convince them :)

Heather said...

The park is actually two-in-one- there is Funtown which does have a pass (I found out after our visit) but they don't have any similar accommodations on the Splashtown part.  It's really a shame because Brian really does enjoy the water part of the park so much more than Funtown.

Heather said...

I completely agree with your thoughts on this.  Sometimes I drag Brian to things simply because I want him to have the same experiences as "typical" kids- but he's not "typical" and if it is more stressful than fun than what is the point.  Glad to see another local mom!  Hi :)