I have a YouTube channel that I set up 4 years ago when Anna was first diagnosed with PDD-NOS. I didn’t know anything about this type of autism and looking back, I can now see signs all along that I didn’t realize were related to autism. So I made a series of short videos about Anna, about her particular symptoms, and posted them. My purpose was to reach out to other parents like us, ones who wondered if they were alone. For the most part, the videos have been well-received and I have gotten many nice stories and comments from other parents and even adults living with autism. Every once in while, though, I get a head-scratcher comment like this one I got today…
My son was diagnosed as PDD_NOS when he was 2 but I’m beginning to wonder what the Dr. would say if she met him now. If this little girl is standard for PDD_NOS then my son must be classic autism. I would give anything if he could ask a question even if it was the same 50 times. He’s almost 8 and has never even said his own name. You are sooo lucky that she is barely affected at all.
Are you serious? Barely affected at all? My first inclination was to fire back a snarky note (which in fact, I did, then deleted it about 10 minutes later). How can another mother say something like this, especially based on a 2-minute video clip taken 4 years ago? I can totally relate to the “I would give anything…” comment. I would give anything for Anna never to experience another seizure, ever. I would give anything for Anna to not be so scared of every social interaction every day, to the point that her anxiety makes her nearly nonfunctioning and she has to take medication now. I would give anything for Anna to not have to take yet another medication that keeps her from raging against her teachers and peers. I could go on and on.
But this is the part that really gets me… “You are sooo lucky that she is barely affected at all.”
Oh that’s right. That’s why she is 9 and in the 2nd grade instead of 3rd. That is why she has IEP goals in reading, writing, math, social studies, science, social skills, PE, OT, and ST. That is why she has a tested IQ between 57-65. That is why she has no real friends and sometimes the neighborhood kids hide when they see us coming. That’s why her little brother already understands that he is to watch out for her even though he’s only 5. That’s why she had to have another MRI (I think it was her 4th or 5th?) a couple of weeks ago. That’s why she still wears a pullup to bed and leaks through nearly every night because her brain doesn’t wake her up when she urinates.
Yeah, you’re right, lady… she’s barely affected at all and I am “sooo” lucky.
The thing, I do realize how lucky we are in many ways. And I feel lucky to be Anna’s mom, I really do. But in no way do I feel like Anna’s life is any easier than anyone else’s. She is the one who struggles, I can only watch and help.