I realized today, looking back on the last year, that once you get that official diagnosis? The learning curve is insanely steep, both for the kid and for the parents. Especially for the parents.
It's just not something most people even consider when they have kids. When you have a baby, you kind of assume everything's going to be fine. I mean, obviously every kid has their own challenges. But for the most part, major developmental issues aren't really on a typical parent's radar.
This last year has brought a lot of learning for us. Words like "low tone", "neurotypical", "joint compressions", "vestibular input", and so on... had zero meaning to us. We went from being the parents of a cute toddler to being advocates of a child with autism.
The logistics of helping Noah are just the tip of the iceberg. Nobody prepared me for the emotional roller coaster. Watching all the other kids at the park play together while your sweet boy wanders around alone? Or having kids, younger than him, ask me why he doesn't talk? It's like a punch in the stomach. I want so badly to make this world work for him. It's getting better, due to so many kids being diagnosed. But it's still a constant worry in the back of my mind.
Then there are the battles. Fighting for your child against the people who are supposed to be on his side. I'm so thankful for the therapists that are good. That get attached to their kids and love them wholeheartedly. That spend their off time researching and learning. Who find the words, "I love you" spontaneously come out when talking to my little boy. The ones who offer encouragement, new ideas, and advice... knowing we're all on the same team? They're the ones I will always thank God for.
But when the school's speech therapist says she wants to combine three therapists into a closet of a room and work with Noah at the same time for 30 minutes? That's when I have a hard time trusting people's judgement. As if that's even enough time for one therapist. Or like one of my friend whose child's teacher didn't remember what grade he was supposed to be in. Things like that make you both nervous and defensive.
I'm having to make a tough phone call this year. It's my very first, and I hope it'll be my last. Last year, I was concerned about the OT the school assigned to Noah. We pay privately for an OT, and that woman has become like family to us. This other girl though? Oh my word. It's sad. She and Noah just didn't click. They didn't understand each other. I wish I'd spoken up last year and requested a different one, but I kept hoping it would improve. He has her again this year. I mentioned the issue with his private OT and SLP. The SLP kind of side-eyed me and asked, "Is it -----?" (taking her name out, just in case). I couldn't believe it. Apparently, this OT has a reputation of not connecting to her students well. She's a very nice person, which makes this call so hard for me. I'm a people pleaser by nature, and I hate to offend anyone. But I have to stand up for my kid and try to find a better alternative.
I don't really know where this post is going. Just say a prayer for me as I try to figure this out. I hate upsetting people, but in the end, I can't spend another year regretting my decision to continue with this particular therapist.
2 comments:
It's a tough battle and a long road, but we can take it one day at a time. We had to go through many therapists until we found the right ones to click with Henry. Don't feel bad for asking to be re-assigned.
I have a feeling Henry's teacher was confused because of how tall Henry is, and he acts older. I talked to the school Case Manager and she reassured me about some things I was concerned about. I can't wait for the Open House so I can observe the classroom. And I'm going to ask her very specific questions about the curriculum for Henry.
I love that graphic - it's so true!
Hey Hailey! You are doing this because you love your kid. Don't ever feel bad about advocating because it is just one part of being a good mom. Anyone who works with special needs kids and parents who find themselves raising exceptional needs kids knows that advocating is just one way that parents love their children. So go for it, with your invisible wonder-woman cape. These confrontations can be bitter to swallow,leave you feeling itchy in all the wrong ways, but since you're doing this for Noah, I am sure you will handle it gracefully.
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