That day was May 25, 2011. And looking back on it now, I can realize what a huge impact this day would have on our lives. At the time, however, I saw it as something that would lift weight from our shoulders, and would give us answers to questions we'd been asking. May 25 was the day that we were told our second born son, Gabriel, had Aspergers.
It's so strange for me to look back on Gabe's life thus far. Because when I look back I don't have memories of "wow, something is different about Gabe." Or "something is off." I simply have memories like this picture:Its Gabe at about 18 months old, with his "Niy". Its his beloved stuffed donkey that my grandma brought back from The Grand Canyon for him. He was sick when she brought it back, and he fell instantly in love. This is probably my all time favorite picture of Gabe. And when I look at this picture, I see my sweet, innocent little boy, with his fresh scar above his right eye brow from the stitched he'd had. I see my sweet, innocent little boy, who had already been through a world of medical things I would have never imagined we'd be faced with. By the time this picture was taken, he could swallow pills. How do I know this? Because by 18 months he'd already been on seizure meds for six months for complex partial seizures. What amazes me even more about all that? I never would have put all of this together and come out in the end with Aspergers. Ever.
People had been telling me for a while that there may be something bigger going on with Gabe. I was in total denial. Total. Sure, my 8 year old was still soiling himself... but the doctors told me that all started as a side effect of the constipation from the seizure meds. I didn't consider the fact that he hadn't been on seizure meds since before he was 5 against him. The doctors told me he had super colon from all the constipation. So to me that answered the question right there. I had his first grade teacher tell me that he wouldn't really be paying attention in class, and that he'd be looking out the window, or off in his own world and she'd try to "catch him on it." But he could still give her the correct answer, so she wasn't concerned. So I went with it, and let my mama bear instincts cloud my vision. He was still, and will forever be my perfect little boy. The same one I had big hopes and dreams for since the day he was born. He was my 6 pound 11 ounce peanut. (I say peanut even though he was my biggest baby at that size. My perfect little boy who in this picture was too little to fill out a preemie onesie.
It wasn't May of 2010 that I really started to see the bigger picture. It was after Dallas, my oldest son, had his birthday and had been given some gift certificates to go and spend. We went to Toys R Us, because there was a particular toy that he was after. I talked with the other three kids a head of time, and told them that Dallas was going to be the only one getting something, that I didn't have the cash to get them all a toy, and the reason he was getting something was because he'd had his birthday, and had birthday money to spend. I also told them that when it was their birthday chances were they'd have money to spend as well, and we could do this same thing for them. At that time, my twins were 4, almost 5, and Gabe was 7, almost 8. Everyone assured me they understood, so off we went. Dallas picked out his present, and that's the moment my world came a little more into focus. My twins were excited for Dallas, and couldn't wait to help him check out the new toy, and Gabriel threw an out and out temper tantrum right there in the middle of the store. I looked at him, and tried to remind him of the conversation that we had outside the store. But all he could see was that he wasn't getting a toy, and that it wasn't fair, and "what about him." That moment shook me to my core.
Gabe had been seeing a psychologist at school for over a year at the recommendation of his doctors, to see if we could get some help with the incompresis (soiling). I requested a meeting with her to discuss what happened, and that's when she sprung it on me. She was suggesting that Gabe be sent for an evaluation "to get the bigger picture." I sat there, in her office, in my children's school, and couldn't think. All I knew was that no matter what the bigger picture was, it didn't matter to me. Gabe is what matters, and he is who he is and how he is and that is why we love him.
I took her referral and her suggestions to heart, and called up Fraser, a local specialist in assessing Autism spectrum disorders. The wait would be 8-10 months to get in. But you know, I was OK with that. It gave me time to process things and let me have time to open my eyes and see things around me that I'd simply never noticed before. Like these "quirks" Gabe has, that now with the ASD thing thrown on the table shed a whole new perspective on:
- Gabe's view of the world is directly related to how everything affects him. It doesn't matter to him how it will affect those around him, if it will bother him, its huge in his eyes.
- Gabe growls. We always just took it as a weird quirk, but the more we watched it, the more we noticed just how much he was growling at his siblings rather than saying what he was feeling, or talking about. He growls when frustrated or angry the most.
- Gabe has an over the top attachment to his Niy. Its his stuffed donkey that goes everywhere but school with him. He rubs it on his face, bounces it in his hands, Niy talks to Gabe, he dresses him up, and Niy is often given more credit in things than Gabe's other siblings are.
- Gabe has very narrow interests. He doesn't like super hero's. He likes batman. He doesn't like Star Wars. He likes Darth Vader. He likes the colors blue and black. He likes Donkeys. He likes kittens. He likes Lego's. He is happiest when these things are around him. He will talk most freely when its about these things.
- He's very loving....... as long as its in his time, in his way.
- He's wicked smart with math. He's been able to do his brothers math for years now.
- He has a TON of Lego's, and can tell you in the millions of pieces, just which ONE he's after. And will search until he's found that exact piece.
- He can make the most amazing creations out of Lego's. Seriously. AMAZING!!!
Now that we know, the answer is really, where do we go from here? Well, my first step has been to spend time to educate myself on all the ins and outs of Aspergers, and what this meas for Gabe, as well as for the rest of the family.
We're in an interesting situation right now... We've opted not to tell Gabe or the other kids about the Aspergers at this time. I know many people would disagree with this, but here's why we've done so:
1. Gabe takes things like this and runs with it as his favorite excuse for everything.
2. The other kids have yet to realize that there's anything different about Gabe
3. We have yet to figure out how to tell him in a way he'll understand.
We don't want Gabe to think there's anything different about him yet. We've made this decision with his psychologist, and feel that for the time being its the right decision for our family. There will come a day where Gabe notices the difference, but for now he's blissfully unaware. The other kids right now just treat him as "that's just who Gabe is, how Gabe is, and we're OK with that." That's not to say that they won't have that same opinion when they know the diagnosis, but for now we too can leave them in the blissfully unaware category.
With each day that passes, life with Gabe gets a little harder, and we're left finding ways to make things work, and to work for Gabe now that we know what the bigger picture is. Its HARD! He's HARD. And because he looks normal on the outside many people just think we have a child who's a brat, or who doesn't know how to share. They think we must spoil our kids because he's having a melt down in the middle of the store because he's not getting what he want. Its just hard.
We're currently working with the school to see if we can get him an IEP going so that he can get some help with the things in school that he's struggling with. I don't know that this is actually going to happen, since he is above the norm with academics, and usually to get an IEP established there needs to be some form of academic need. If the assessment shows he doesn't qualify, then we will likely go for the 504 plan (or is it 501? All these new things I'm learning. Many of which I was unaware of even 12 months ago.) so that there can be some accommodations for him in the class room.
Life with Aspergers is nothing like I would have ever thought. And I know how lucky we are, because he is on the mild end. He can talk, he can share his feelings with us, he has his moments where he has empathy, he has his moments where he's totally and completely normal. I know there are so many other families who struggle so much more so than we do. Families who's biggest wish is simply to hear their child say "I love you." And I know we're blessed with Gabe, regardless of the diagnosis. But its not always easy to remember that when you're in the throws of battle every day with the ins and outs of a child with ASD.
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