Are you serious?

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.”

Barely affected.

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.

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  • Devin - That made me tear up a little bit. I'm sorry that some people feel the need to give their two cents without *really* knowing anything about your (or Anna's) situation.ReplyCancel

  • Heather C - Holly, I am so sorry. In general, I don't think we ever accomplish much by making comparisons. Easy, harder, "barely affected", severly affected….what does any of that accomplish? The fact of the matter is, parenting a kid with special needs, no matter how you want to stack it up, is tough. No one can tell from a short video clip what you live with every day. All the work that goes into helping her move forward, all the worry about the seizures, all the testing and doctors.

    It is like I have said before, when people tell me having a sn child is a "blessing from God", it makes me want to sock them. Yes, I am blessed to have my beautiful child but comments like that, and the one made to you, undermine how tough it really is. We can all always find someone worse off for whatever situation we are in. However, that knowledge doesn't make what we are going through any easier. That's why, like I said, comparisons are pointless.

    You are an awesome mommy to that beautiful girl and you always amaze me at your ability to dig in and do what Anna needs even when it is hard.

    Love you sweetie.ReplyCancel

  • Mom to Maddie - ((HUGS)) Holly, One thing I have learned form my *friends* along the way, is that we all have children with SN and we all are affected differently, but all affected…kwim? It really doesn't matter when it comes down to it…but they all go through so much and we as parents go through so much with them. I do count my blessings, but at times I think some people have misjudged us for not realy having much to worry about. Life is hard no matter which way you slice it. And if you were to ask Anna or my Maddie if their life is barely affected…I would say not. This is one day in particular she would disagree for sure…

    By the way, thanks for stopping by my blog…I did respond to you..

    AshReplyCancel

  • Carol Askew - Heather said what I wanted to say, but more perfectly. Obviously this mom has her own trials and issues, and I'm sorry she vented on you. She shouldn't have judged your situation based on a short video. It does remind me that I should never judge others in that time. We never know what others might be going through. ((hugs))ReplyCancel

  • typicaljenny - We are lucky though mom. We get to have her in our lives. <3ReplyCancel

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