We didn’t get good news yesterday. They told us our sweet Knox has Autism.
I feel like I’ve been punched in the stomach. I was totally blindsided by this. I had prepared myself for a possible PDD diagnosis, but I didn’t imagine that he was anywhere close to being “bad” enough for a full Autism diagnosis. It’s been an extraordinarily emotional past 24 hours.
We went to the evaluation yesterday morning, and Knox was in such a good mood. He was in rare form, though, hyperactivity-wise. He was pretty much bouncing off of the walls. The two women that performed the evaluation were so, so sweet and very knowledgeable. The center was set up into three rooms: a “living room” type area with couches where we sat and talked, a huge playroom with tons of toys where they watched Knox play independently, then the evaluation room, which was mainly empty aside from a few items they wanted to use during the evaluation.
We talked about Knox first, and went over paperwork and some questions with one of the ladies while the other watched Knox play and took notes. They watched us interact with Knox and praised our parenting techniques, saying that he responds so well to us and that we are doing everything just right. That felt good to hear, even though I would much rather have heard that my kid was fine and that I was a crappy parent over that he has Autism and we’re good parents. I don’t get to choose, unfortunately. After we talked, they did the ADOS (Autism Diagnostic Observation Schedule) evaluation. Knox was very hyper and didn’t want to listen to some things, but then he did a few things that surprised us. They had a pretend birthday party for a baby doll, and while he had no clue what she was talking about when she asked him to blow out the pretend candles, he loved feeding the baby the play-doh cake and even laid the baby down on the blanket to go to sleep.
Before we left, they told us how amazing Knox was, how sweet he is and how we’re doing everything right. That she wished she could see him as a teenager to see how he grows up. We left feeling so hopeful and upbeat. Trevor even asked me, “So do you feel better, now?” And I did. Stupidly. We went to eat lunch and headed to pick up Brody from my mom then went home. We had to wait around for their call with his score. That was a tough wait.
She finally called just before 5. She said that Knox had met the criteria for an Autism spectrum diagnosis. I sat there waiting for her to tell me it was PDD but she never did. So I asked, and she said they used the criteria for Autism. And he had it. I felt so betrayed to hear that. How could she have sat there and seen my wonderful, sweet little boy then tell me something like that? I sat there, fighting back tears, while she explained and justified their scoring and evaluation. I wish I could say that something didn’t make sense, but it all did. They did a thorough evaluation of him and it all made sense. But then it doesn’t. My mom heart is absolutely broken. I searched for some absent positive in our conversation and took notes feverishly the whole time I spoke to her.
I asked about prognosis. They can’t tell me that with any degree of certainty because they don’t know. Every child is different. Helpful, right? Their evaluation does not measure intensity. It’s more of a “yes or no” type thing. She did tell me she felt it was more mild, and that she would consider Knox to be high-functioning. She said he does not have any cognitive or adaptive impairment. That he’s very bright, curious, determined and sweet. She said he’s an amazing child. And he is- that part I know they got right. She said not to expect any less of Knox than we would of another child because he’s capable of so much. She thinks he may thrive with more structure in a school setting, that it may be what he needs. She did say that his activity level may have skewed his score slightly because he wasn’t paying enough attention to instructions. But that it probably wouldn’t have made enough of a difference to change things. I hung up and absolutely fell apart. I’m still falling.
Trevor isn’t dealing with this. He was very irritated with me for crying and freaking out because he doesn’t put any stock in this diagnosis. He insists that Knox is fine. That he’s on the fence, so to speak, and could fall off on either side- one side being Autism and the other being Neurotypical. It’s hard. This is how he’s dealing with things, but I need to be realistic to deal with this. He isn’t denying that Knox needs therapy and is pro-intervention. He’s just not wanting to hear the “A” word.
I didn’t want to hear it either. I feel like someone just branded my child with “Autistic” across his forehead.
I don’t see him differently. He’s still the same Knox he was on Monday. I still love him just as much. But my gosh, I know how many narrow-minded jerky people ARE going to judge him and look down on him and wonder what’s “wrong” with him. It kills me. I’d rather chop my own leg off than to have him hurt for a single second. It’s not as bad now because he’s two years-old. People can take these “different” behaviors and chalk it up to the fact that he’s a toddler. I worry how he’ll be when he’s older and it’s obvious that something isn’t totally “right.”
But I’m going to deal with this. I’m going to fall apart and crumble and freak out and sob and be devastated right now. Maybe even for a long while. Then, I’m going to pick myself up, suck it up and be a rock for this boy. I’m going to do EVERY SINGLE THING in my power to help him. To give him the best life possible. To make sure he is okay. He will know that God loves him, and he will know that his mom loves him. If nothing else, he can be sure of those two things.
I fell in love with this boy before I ever knew him. And I will make sure that he has a fighting chance. He will succeed, and he will be okay. Autism will not define him or me. I will not let it. I will not use it as an excuse EVER, for him or for me. As my small group leader (whose son has PDD) told me last night “It will get better in time, and God is bigger than Autism.” Darn straight, He is.
Even though I sob as I type this, I know that our God has a plan for Knox. He gave him to me for a reason. He made me a mother for him. We were meant to be. I’m never going to understand “why?” even though I crave that answer. All I need to know is that I love Knox. He’s my sweet, sweet boy, and he always will be.
“Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him,
and he will make your paths straight.”
-Proverbs 3: 4-6
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