Ups and Downs

It's been a real rollercoaster week for me. For us.

Patrick has had some wonderful highs. For example, he's doing really well in speech therapy. His communication has been astounding for a child who a year ago made almost no intentional speech without prompting.

But for me it's been a week of realizations...some of which I don't like. I don't want to hear it. I don't want to know it. It's been tough.

I accepted early on that Patrick would always be Autistic. I knew that meant a lifetime of work for us and I knew he would always be different. I think what I forgot to realize was that meant everything would be complicated for us....and for him. He'll never "just go to school" or "just go on a trip" or even "just watch tv".

Every school trip. Every visit to the doctor. Every THING will have a twist, a spin, something that has to be dealt with in order to overcome.

And what set off all this negative thinking? They're having to use a seatbelt on the bus so he won't wander around while he's being driven to school. Seems silly now in retrospect.

But, be reassured. One day soon he'll have a great day at school (they've been mediocre at best this week), or he'll say a new word or phrase, or he'll do something else wonderful and unexpected and we'll be back at the top of the rollercoaster, gasping for breath, smiling from ear to ear and loving each other as fiercely as we dare.

A conversation

Dental Hygienist to Patrick "Have a nice day at school"
Patrick to Hygienist "Have a nice day at the dentist"
Hygienist to Patrick "Thank you for being such a good boy"
Patrick to Hygienist "Thank you for the two toys from the treasure chest"

I laughed at the second one and honestly nearly fell over when I realized he had just had a conversation with someone who wasn't mom or dad and didn't have any help figuring out what to say!!!!

What's working for us

This post has been rolling around in my head for almost a month now. It seems that a lot of bloggers talk about what's working for their children. You get a lot of people who think their way is the best way. It's kind of hard for a new autism mom to navigate her way through all of it.

So, I think more for myself than anything else, I'm going to go through what didn't work for us and what's working well for us now.

ABA didn't work. Well, we're still on the waiting list for the waiting list for the provincial program so I should say ABA done by us in the home didn't work. Patrick just couldn't generalize any of the skills. And a lot of the skills were things he'd learn easier if they were just explained. It got very frustrating and we eventually stopped. We might be willing to try again if we feel he's needing it and if we ever come to the top of the list.

RDI didn't work. This one I was sure was for us. But again, Patrick couldn't go from a game with balls teaching him to be ok with change to actually being ok with change. The games were fun and we still do some of them because we like them but they are more for fun than anything else. I loved the idea of floortime and we do spend a lot of time on the floor together (laughing) but we no longer really follow that plan either.

What's working for us?? Life. Life is working for us. Want Patrick to get used to a loud room with lots of kid running around? Take him to a loud room with lots of kids running around every week and help him deal with it.

Want Patrick to understand how to deal with new bus drivers? Put him on the bus with different drivers and help him deal with it. Want Patrick to learn to sit in a circle at school? Expect him to do it everyday until he does.

Want him to eat more foods? This one was more difficult and left up to daddy. But they sat together, in a loving and peaceful way, and worked every day on eating different foods. He talked quietly and calmly into Patrick's ear keeping him unruffled so to speak and kept helping him. Result? More eating....yay.

This sounds so simple when I type it out. And maybe all autism parents do this and we're just behind the ball. I really don't know. Basically instead of backing away from potentially embarassing or difficult situations (which we used to do a lot) we just jump right in. We intentionally seek out these scenarios and work on them together.

Don't get me wrong. Patrick still goes to speech therapy. He gets some OT in school. He's not being cured. He'll always be autistic and he'll always be Patrick. But somehow, with our life plan, we've gotten him to a point where meltdowns are fewer and school is working.

In dealing with these thoughts and ideas I've come to a very important conclusion. What another autism parent is doing is not necessarily a jump off point from which to start when you're new at this. I found myself copying a lot of other parents trying to do what was right for my son. What I found out? What's right for my son is something I had to learn through trial and error. I had to take HIM and work with HIM until we hit on an approach that would work for us.

The biggest lesson I've learned this year? Don't judge. Don't assume. And learn to think outside the cubicle.