Last March I spoke about disclosure & advocacy in autism and finding that balance between sharing about the disability and not sharing. I'm just going to un-load my brain about advocacy today, and how it needs to be turning more into self-advocacy for Caleb's sake as he grows up.
Caleb is older now, and has learned a lot in the last year. However, he stills seems unaware of "his condition". I'm 100% sure he knows he is different, but I'm not sure he could put a name to it. I have talked with him on numerous occasions to help him see and understand himself better (I feel that a child with a special need should know that they are different because they already feel it and letting them know it's legitimate can be liberating), but when I mention "autism" all three of my kids have blank looks on their faces. Geepers.
At the kids' school a few weeks ago there was a presentation on autism, and when I was talking to the kids about it after I said, "well, you know Caleb has autism, right?". The girls responded with some vague, "......oh, yeah. Now I remember!". So, clearly we've missed something here with teaching our kids what the heck we're living with!
The key (I think) to really getting a child to move on from having his/her parents & other non-special needs adults advocating for them is early teaching.
Now, as mentioned above, we're failing at this early teaching bit...
However, I can say without a doubt that Caleb has learned one important thing in this last year involving disclosure and advocacy: he knows he's on a special diet.
This may not seem like a big deal, but it is to me! It means he is understanding his own limitations (even if it's only a food related limitation!). Small victories here people. :)
He doesn't need to say he can't eat wheat because he has autism, he can just say, "I can't eat wheat". Well, actually, what he really says is, "This will not have wheat?" (that's how he questions a food item), and then "Caleb will not eat wheat for really tummy will be sick". So, it may take some de-coding, but most people understand what he's trying to communicate.
There is a wonderful (wonderful!) woman at the Belleville noFrills who loves on my kids whenever we're in there. She's our grocery store Grandma. :) She comes and talks with us, tells the kids how nice they look in their Sunday clothes, and then she'll give them a treat. These treats are always different, some are hilarious (she once bought them each a litre of ice-cream because it was on sale!), and sometimes she'll bring them into the staff room and let them have a snack from there (usually freezies or popsicles or cookies). So, freezies and popsicles are ok for Caleb to eat, but the cookies? Not so much.
One day she brought the kids back to get a treat from the staff room, and they came out a few minutes later; the girls with crumbs on their faces, and Caleb, holding an Oreo.
Our grocery store Grandma said, "Caleb won't eat this cookie, and he said something about wheat and a tummy ache?". I was so proud! I explained that Caleb doesn't eat wheat (she already knows he has autism), and so our wonderful grocery store Grandma bought him a pack of Tootsie Pops. Caleb was pretty stoked about that!
Just this year at Easter, Caleb was doing a treat hunt at his Grammie & Grampies, and he found a huge Twizzler (liquorice) in a tree. Caleb happily pulled it out the tree, and said while retrieving it, "This will not have wheat? This will have wheat for Caleb's tummy is so really sick".
I was standing at a distance (taking the pictures you see above!), and was so proud of Caleb! He maybe needs to work on how exactly to get his restriction across, but he knows there is one, and that is the first, and most important step in being a self-advocate, not just having Adam and I (or his sisters) do it for him.
The food restriction is a great example of when we (or Caleb) don't need to explain that the food restriction is a way of coping with his autism. Especially in today's day and age where everyone is on some sort of food restriction diet (peanut-free, wheat-free, dairy-free, sugar-free, etc., etc.), it's fairly common to come into contact with someone who isn't eating something for any number of reasons! So, saying, "Ooohhh nooo, he can't eat wheat because he has autism and it effects his gut, which then effects his brain....(yadda yadda yadda)". You can see how this would just create more questions and make things way more complicated than they need to be. That is not helpful for Caleb or the person who's stuck trying to figure out what the heck we're trying to say.
This past winter, Caleb had a "situation" involving another young boy. The phone call I got was, "Caleb's bit someone. We've talked to him about it, we've told him that his next recess he won't be allowed to go on the sledding hill (where the altercation happened) he's apologized, but we needed you to be aware of it". I hung up and was a mix of angry, sad, confused, and so I just started crying.
In all of Caleb's years, he has never NEVER bit anyone! Ever! He's never even hit anyone on purpose. He'll wrestle with Adam or the girls, or his cousins, but he's never gotten so pissed that he just let them have it.
When he got home I asked him about the phone call I had gotten. I said, "did you bite someone?" He said, "yes". I said, "did you punch someone too?", he said, "yes". There was no mention about punching in the phone call I got, I just made it up so I knew right away he was just saying "yes" because he thought he should?
I asked him if someone made him angry at school, and he told me someone did, and who it was. I asked why he was angry at this boy, and he said (something like), "(so and so) was so very bossy to Caleb and doesn't let Caleb on crazy carpet". So, maybe this other boy was just trying to keep the sledding hill organized to keep kids from running into each other and going down before the hill was clear. Or maybe he was strait up being bossy to Caleb and being a turd, I'm not sure?! Caleb's communication skills aren't so great that he can sit and tell me a story about his day, and the only "witnesses" to this biting incident were a bunch of other boys, so the story is blotchy at best.
I wished in that situation Caleb would have the self-advocacy skills to say, "I didn't bite him!", instead of seeing/sensing there is trouble, being asked, "did you....(fill in the blank)?", and he just says "yes" to be co-operative. I honestly still don't know the real story, but I do know Caleb. I've seen him at his very best and his very worst, and even at his worst he has never acted out violently towards anyone.
I want Caleb to be able to stand up for himself and who he knows he is, and feel confident in defending himself if the need arises.
As a "normal" person, if someone accused you of something you didn't do, you would say, "that's not true", right? Imagine not being able to? You can't make the words form and come out of your mouth because your brain and mouth are not always in synch, and your brain is also firing on all cylinders all the time, and now, in the middle of a stressful situation, all you can say is, "yes", and "I am so very sorry", things you've memorized because you know it can help make the craziness stop.
What a horrible place for anyone to be in, and Caleb is there often. As he gets older I want to know he's being trained up in the skill of self-advocacy (and disclosure and knowing when to share his diagnosis with others).
In the meanwhile, I will still stand up for my Caleb (& for all my children), but with a more focused goal of creating a young man who doesn't always need someone sticking up for him, a young man who is bold about who he is; a wonderful, funny, and sweet young man with a big heart.
Hi, I'm Amy-Lyn!
I am the lady behind this here blog! I live in the sticks with my animals, my super handsome husband, and my
3 amazing kids!
Here you'll find things from recipes (gluten-free, paleo, and strait up junk food!), DIY ideas, thoughts on raising a son with autism, and whatever else pops into my brain! : )
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