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“These People”

When our youngest son was first diagnosed on the spectrum (officially PDD-NOS), I was devastated but also relieved. We finally had an answer. We finally had access to help. I was finally vindicated with the knowledge that no, I was not just a bad parent, my son had/has something different going on. It was not the end of the world, in hindsight. He is high-functioning, verbal, extremely smart, physically capable. In recent months, I’ve learned there’s a downside to that.

We were lulled into thinking since he is high functioning, verbal, extremely smart and physically capable, our autism road, while not easy by any means, wouldn’t be nearly as bad as for others. Then this year happened. Even high-functioning autism sucks (sorry for the word, but sometimes, there’s just no better way to put it). There is not a day I drop my son off at school and don’t spend those hours expecting a phone call or email. There isn’t a morning we don’t struggle to get through the morning routine and out the door. The meltdowns are frequent, the tears even moreso. We have spent the last seven months adjusting meds, trying  new meds, attempting this accommodation and that accommodation, this method and that method to calm and keep calm, this incentive and that incentive, this intervention and that intervention. I’ve read countless books and articles. I am exhausted most of the time, physically, mentally and emotionally. I can’t count on him getting through the day, any day. This. Is. Hard.

And then, just when you think you’ve reached a level place, your 9 year old informs you he’s having suicidal thoughts. Gut-wrenching. Am I happy he was able to verbalize this? Heck yeah. But hearing those words broke me. We went to a place I never, ever thought my high-functioning, verbal, extremely smart, and physically capable child would go. I realized that we are included in the group of “these people.” High functioning, low functioning, verbal, non-verbal…..we are all in the autism world. It’s hard. It’s exhausting. It can be extremely brutal.

I write all this because I think there’s a mindset out there high functioning autistic kids don’t need as much. I believed it myself, honestly. When he was first diagnosed, I thought we would get him some therapy, maybe do some social group stuff, add a couple of things at school, and we would be good to go. But he needs, oh how he needs. That’s hard to admit, and it’s hard to take in.

 

NaBloPoMo prompt for today: Do you think you’ll still be blogging ten years from now?

Well, you never know what life is going to bring. When I first read the question, I immediately thought, “YES!” I’ve been a journaler since early high school. I don’t see that changing. Will I always use a blog as the tool? I’m not sure. I think so. It is my therapy, my outlet. But ten years is a long time. My kids will likely be out of the house, off to college. A lot  happens in ten years. Will I still be writing? Definitely.

3 thoughts on ““These People”

  1. Please let me offer you a sincere hug. My son just started high school, and it’s much harder for him than we anticipated. We talked to his neurologist about the situation. The doctor’s recommendations have left me in tears. Early on, at the time of diagnosis, the doctor was confident John would outgrow most of the “autistic-like” behaviors he was showing. Well, that didn’t happen. It might never happen. Another little piece of hope has just been taken away.

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