A while ago, a Facebook friend posted an update that read:
“It’s so easy for a special needs parent to become so wrapped up in advocating for the rights of this tiny community, that their own child fades into the background. I’m constantly aware of how fine that line is.”
Stacey is mom to three little boys, the eldest of whom has De Morsier syndrome, and she is an outspoken advocate for Autism (her blog is here).
Her status really hit home for me and it got me thinking about being a parent to a special needs child, and how I parent my knucklehead.
Many times in our lives, as he and I lived with ADHD and I became more and more determined to create awareness and educate people about the disorder, it became all about me.
How I had to parent a special needs child.
How I had to deal with people’s rudeness and incompetence and crass questions.
How I had to take time off work to get to doctors’ appointments and occupational therapy and shrinks and speech therapy and parent teacher meetings and school conferences.
My son needed far more help to get through every day than I did, but sometimes I was crusading so hard and feeling so sorry for myself that he got left behind.
First of all, let me state very clearly – so there’s no doubt – if your child is diagnosed with ADHD, you are parenting a child with special needs.
ADHD is often called an invisible disorder, and I must be honest – sometimes I am glad for this. If you are a parent to a child with a visible disability or handicap, you are subjected to pitying looks and outright rudeness! Its as if being able to see that someone’s child is different entitles people to ask questions at point blank range.
“What’s wrong with your baby/ daughter/ son?”
“Are you going to fix it surgically?”
“Was she born that way?”
“Does he go to a special school?”
“Oh you MUST try XYZ?”
“Have you looked into such-and-such a product?“
Do people REALLY think that the parents of a child with a disability or handicap of any kind have not ALREADY done – and are doing – as much reading and research as they possibly can?
I get that they just want to help, I just wish they’d think before they speak!
Look at it this way. If you tell someone your child is asthmatic or diabetic- also fairly invisible disorders- people seldom launch into a diatribe about how its a fake disorder created so drug companies can profit. They’re still quick to make suggestions about treatments and tell you of their own experiences, but mostly the show concern and empathy.
If you tell someone your child has been diagnosed with ADHD however, they don’t ask how you’re doing. There’s no empathy. They say things like, “Ooh is she on Ritalin?“, “Well I hope you’re not drugging him!“, and “Oh I was just like him as a child but my parents disciplined me properly.”
Do you know that children with an ADHD diagnosis have a worse quality of life than children with asthma or diabetes? They don’t do well at school, they don’t do well with interpersonal relationships, they’re always in trouble, and they blame themselves.
Is it any wonder that sometimes its all ME! ME! ME!
Listen to me! Help me! Show me! Answer me! Anything!
For me, raising a special needs child feels like I am always on the defensive. Even now, with a grown up son.
Every single time someone mentions ADHD, I brace myself for the slew of jokes and opinions that inevitably follow, tossed about by people who only ever read YOU and Huisgenoot, or watch Carte Blanche. Even if they’re not actually talking to me, I have to all but bite my tongue and I am not always successful.
I am constantly second guessing myself and wishing I’d done more, tried harder.
I probably could have. Should have.
If I’d worked harder perhaps my son would have finished school. Perhaps he would have gone on to some kind of tertiary education, perhaps he may even have become the Marine Biologist he always wanted to be.
Hindsight is always 20/20. And I didn’t know then what I know now.
Is it any wonder that my son occasionally faded into the background of my battle with ADHD?