Special Needs, Needless Blame

First noticing your child might have special needs is not the same as being ready to accept that your child has special needs. While I’ve had time to understand my son’s autism and accept it as a part of who he is, my initial reaction revolved around trying to figure out why and how to fix it.

That was a difficult time for me. For weeks, I had noticed Lucas’s mannerisms and demeanor, even at such a young age, differing from other babies. He was seeing delays across the board and, as the months ticked by, they continued to pile up.

I remember desperately searching for an alternate answer. My first instinct was that it wasn’t a real developmental issue, it was probably my “fault”. I still remember texting my wife as if I come to a sudden epiphany. I had reasoned it all out in my head and the cause had to be how I was raising him.

“I think I figured out the problem with Lucas. With Olivia, I spent less time wrestling around with her and being silly. I should focus more on just talking to him. Then he’ll definitely understand.”

In hindsight, my entire thought process was flawed. For starters, I had raised both Lucas and Olivia in identical ways. While she spoke early and has excelled in school, he struggled with the most basic tasks. Their upbringing, while very similar, produced very different results.

snSecondly, it had nothing to do with me. I wanted it to, though. If it was somehow something that I was doing wrong, I could correct it. If I could fix my behavior, it could then fix his behavior, and then fix everything. We would be a human domino effect of happy endings.

Of course, it doesn’t help that people are constantly looking for either blame or cause when they hear your child has special needs. Whether it was an elderly relative implying that we simply haven’t spoken to him enough or a confused friend interrogating me about vaccines, they all have an idea of how to “fix” a situation no one asked for help fixing.

There’s nothing more frustrating than telling someone about your child’s special needs and being greeted with an immediate inquisition on potential things they think you could have done to cause them. People ask about vaccinations, flu shots, breast feeding, and tons of other random possibilities they read about in a Facebook headline. What they don’t get is that no one asked them to help with treatment. We’re just simply telling you who our son is.

Imagine if that attitude held true for any type of ailment. What if you told someone your grandfather has psoriasis and they quickly began screaming about how psoriasis is caused by Oreo Cookies? Even if they think that’s 100% true, who cares? No one asked you to help figure out where it came from. Even if it was the cause, how does that make a difference? He still has it. Why he has it (or more appropriately, why they think he has it), has nothing to do with the conversation.

The search for a reason doesn’t end in the mirror either. As you’re coming to grips with reality, there are many moments of shocked clarity that go nowhere. One of my major eureka moments involved his hearing. I woke up one day and thought, “Oh wait! Maybe he’s deaf!”

I excitedly told many of his at-home aids, who all gave me a sideways look and an official, “I’m not sure, but you could check it out.” That’s not how I heard it in my head, though. I heard, “Wow! You’re a great dad AND a great detective! Way to go, Dr. House!”

I tested my theory by whispering his name behind him to see if he turned around. When he didn’t, I silently cheered. When he did, I told myself that one didn’t count.

Of course, it all ended with a heartbreaking trip to have him tested. It was just him and me in the room as they set off a series of beeps to measure his brain’s response. There was no raising of hands or verbal confirmation that he was hearing anything. It was all computerized. Because of that, I didn’t know how he did until it was all over and the nurse came back into the room.

Well, Mr. Guttman, we did the test and there isn’t anything wrong with his hearing. Of course, you can do follow up testing…

She droned on with important suggestions and information but it had all turned into Charlie Brown teacher language in my head. That drive back home was the drive where I finally accepted that he had autism. It wasn’t about lack of being spoken to. It wasn’t about lack of hearing. It wasn’t about Oreo Cookies. It was about the responsibility that I had to help my son live the best life possible.

Looking back, I feel bad about all I put myself through back then. However, I don’t regret it. Those questions and hazy feeling of confusion are all necessary when it comes to learning your child has special needs. It’s normal. In fact, it would have been abnormal if my initial response to his diagnosis had been, “What’s that? He has Autism? OK. That’s cool. Want to order Chinese?”

It’s scary when you don’t know what to expect next. In the end, your fear of the unknown will never match the reality of your situation once you know it. Don’t beat yourself up for your child’s special needs. Don’t beat yourself up about beating yourself up either. It’s all part of the process. Do your what-ifs, worries, and blame. Then, focus on what’s truly important. In the end, if you love your child, none of it matters anyway.

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2 thoughts on “Special Needs, Needless Blame

  1. This had me in tears. My little boy will be 2 years old in just over a week, and I’ve known in my heart he was autistic for almost a year now. I tried to talk to my husband and my mum in law about my fears and was told by my mum in law his delays in walking and talking were because I hadn’t exposed him to other children enough by taking him to toddler groups…even though I took him to the park daily. My husband would get angry and tell me I was wrong and he didn’t want to hear about it. I know now it was fear on their part that made them say the hurtful things they did, but it made me feel incredibly alone. I moved to England from America 3 years ago when I married my British husband, and it just felt like I had nobody for support, and all my son’s problems were down to something I did wrong as a parent. I guess it doesn’t count that I raised my daughter from my previous marriage exactly the same way, and she’s about to start her final year at University, earning a degree in International Business with a focus on Asian Languages. It’s incredible the unhelpful and hurtful things people can say. We’ve been seeing speech therapists and physiotherapists for about 7 months now, and our last visit they brought up autism. They feel that is what’s causing all of his delays and have referred us to a pediatrician that specializes in it. They’ve started talking about special needs nurseries, and other help available to us. Now my husband’s family are being very helpful which I’m thankful for, but not once has anyone said “I’m sorry” for making me feel like an inadequate mother. Sorry for the long comment. I tend to talk a lot lol. The main purpose was to say Thank you for your blog. I see so much of my experiences in your posts, and it makes me feel not quite so alone in my fears and frustrations.

    Liked by 1 person

    1. It’s very hard when you do everything right and people assume you’re not because certain expectations aren’t met. I used to get the sinking pit in my stomach when people would try to give him a “high five” and then look at me when he ignored them. I’ve found that people – especially when dealing with someone else’s special needs child – don’t usually imagine the pain that the parents experience. It’s almost as though they want to put it out of their heads. It’s hard for many of us, especially before we have a concrete diagnosis or reason for the delay. Even then, there will be people who still don’t get it. I’m sorry you had to experience that, but I’m glad you have such a strong support system now. The road gets easier and soon you’ll see yourself excelling in ways you never dreamed and accomplishing things that you didn’t think possible. There will be moments of frustration, sure, but you won’t feel inadequate.

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