The Psychology of a Special Needs Parent
So much of parenting a child – with or without special needs – is about more than just the practical, day-to-day things; it’s also about the psychology of both child and parent. We put so much emphasis on our children because they’re our focus, but I wanted to look at some things I’ve heard in passing recently and think about.
IEPs or 504s or therapies are your business and yours alone.
After last month’s column on IEPs, I wanted to touch on this idea because I know that IEPs and 504s and speech and occupational therapy and the like can be overwhelming for parents, especially those are that are new to the process. If your child needs any of these, remember that the goal is for the school system to provide you and your child with what s/he needs to succeed in school. It is nothing more than that.
I always worried, irrationally, that I wasn’t doing enough or that we should have done more in the past, and I would rack my brain to find where our time had gone. Then my son’s teacher would talk me out of my whirling tornado of anxiety and remind me that no one needed to know a darn thing about my kid. No one had to know what labels or therapies my son needed because, by law, it was between the school system, his teachers, and us. If I chose to share with another parent, that was my prerogative, but I was not obligated to share or justify or explain anything to anyone.
Having an IEP or receiving therapies doesn’t mean anything other than the school system wants to provide your child with what is necessary for success at school. None of it obligates you to tell others if you don’t want to; you need only share what you feel like sharing with those around you.
How do you handle the stares?
I saw this question come up recently in a parenting group and I tried to formulate a good answer. I empathized with her; I know what it’s like to go to Chick-Fil-A and have your kid flip out because there are too many kids in the play area and the ambient noise is too loud and JUST GET HIM OUT OF THERE because he’s unhappy and uncomfortable. I know what it’s like to wrestle that mid-meltdown child out to the car with his baby brother in tow and have ZERO people offer to help and instead just stare while you’re trying not to cry. After moments like that, we thought about avoiding situations that might invite those stares, but that also meant limiting our life as a family and I refused to do that.
How does one handle the stares then? I’ve learned to ignore them because I’m determined to give my kids chances to try things and learn what they like. I also realized that all kids have meltdowns, typical or not. I can’t get through a trip to the grocery store without hearing a child whine in that intonation akin to nails on a chalkboard or the hysterical crying of a child who desperately needs a nap. I’ve seen the same meltdowns that I’ve experienced with both of my boys, typical and special needs, but I know that all parents experience meltdowns. It matters not if that child is special needs or typical; people are going to look at you and I try to remind myself that more than likely the people watching are tsk-ing in commiseration.
He has an ADHD diagnosis, but his mom is afraid of the label.
A friend told me about a mom that she met recently while volunteering in her child’s classroom. The mom was concerned about a homework assignment and said, in passing, that her child had an ADHD diagnosis, but the school wasn’t aware of it because she was afraid of the label. My son has a diagnosis too, Autism Spectrum Disorder, so I understand the psychology of labels. I once had someone ask me why I was so eager to get a diagnosis for my son. “Do you really want a label following him around and limiting him?” this person asked me, well-meaning in intent, I’m sure, but kind of annoying. Sure, we were getting services with a developmental delay designation, but I knew that he would need that diagnosis one day, though, and so my husband and I pushed for it. Still that question bothered me. Outside of the practical aspect of having a diagnosis, what good would having one do us?
I realized it didn’t make a difference to me if he had a label or not: he is still my kid. He is still a CHILD, who has years of growing up to do. So, to answer that well-meaning question minus the expletives I would like to pepper the answer with, I would say that it’s just a label. I can let it define my son or I can look at it as simply just a word, one word that might encompass some aspect of my son, but does not define his whole being. It is much like labeling me as a woman only captures one aspect of me, but is not ALL of me.
IEPs and therapies do not define your child. Labels do not define your child. They might be one aspect of your child, as gender or age or height or hair color might be another, but meltdowns and stares and the like are a moment. No label or meltdown or therapy or anything like that is the totality of your child and your life as a parent of that child. The kisses and hugs and snuggles and moments of love, alongside those moments of struggle, are what I like to think of when I think about my two boys.
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Jennifer Kelly grew up in the Birmingham area, but migrated to Huntsville for graduate school and put down roots after meeting her husband, Jamie. In addition to being a mom to her two boys, she is a tennis ninja, trivia nerd, freelance editor, and aspiring writer. You can visit her at The Sir Barton Project, a blog about her upcoming book.