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.
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.
posted by mumkeepingsane | 9:41 AM
6 Comments:
That rollercoaster experience sounds familiar. On the whole, it sounds as if Patrick is making fantastic progress, but as you say, there are still probably going to be challenges for him, every step of the way.
When I look at the small details (a new word or sign, something that resembles a hug after bathtime), i feel pretty positive. If I look way into the future, I get more overwhelmed and worried. But as you said, there is always another bit of progress ahead to pick you back up.
Alice
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.
As a former wanderer (and a daughter of one, and a mother of one), I know from experience that the wandering years don't last forever, although it may seem that way sometimes!
Autistic kids grow and learn. Eventually they get mature enough so that the school trips and the doctor visits and most of the other problematical "things" will just be ordinary events, with no twists or spins or worries.
-- Bonnie (whose 16-year-old son was a hellacious wanderer 10 years ago; he's now a calm, responsible honor student and varsity athlete who recently went on a weekend trip with his wrestling team)
Thanks for sharing this. I feel like this a lot. I sometimes feel and think that there is no way my life could get anymore complicated and then….it does. Sometimes just doing everything that needs to be done every single day is overwhelming enough, that when I add anything new to the mix I feel as though I will crash and burn.
Ahhh...the wandering. My son, Tim's bus is fitted with seatbelts, and they use them. Of course, in the car, he uses them...
Last week, when I took the kids to my parents for a visit, halfway around the beltway, I noticed Tim waving and trying to get my attention from the back seat--in my rearview mirror. It took me a second to realize he'd shimmied out of his carseat and was wiggling in the back seat...Now, he responded to my roar to return to his seat, and his sister reached over and did up his seatbelt...
When I got to my parents' house, in tears, and related my tale, my father barely looked up from his paper. He said, "Honey, when you were five you opened the back door, while we driving across a mountain. "
I got the implied message. I've learned from my folks more than anyone to just take these things one step at a time, because, as "momontheverge" says, looking at the small details is best--the enormity of the future can be overwhelming.
Here's to a better week all around :)
Worst noted to date - 17 stops on the motorway hardshoulder as junior had 'escaped' from his seat belt and was bonking me on the the head with the buckle.
We survived - the High Way Patrol didn't find us and fine us.
we didn't cause an accident.
He slept very well after all the upset - I didn't sleep as I was too busy counting the extra grey hairs.
Cheers
My experience with autistic children is limited to what I see in the ER and then I always ask the parents the best way to approach a task or medication and we keep the stimuli as minimal as possible.
I have to tell you, Patrick sounds like a doll, he really does, especially after reading your account of the conversation at the dentist office! : )
I've also spoken and taken care of adults with autism and it is very interesting to hear their take on how they handle life!
Post a Comment
<< Home