My twice exceptional child is, well, thrice exceptional to be exact. All that exceptionality comes with a few major challenges, though. What child doesn't, of course, but without a doubt the worst things to deal with is what other people say about my special needs child. I asked parents about the worst thing they heard about their child with special needs because I don't want to be silent about things that matter. Will it make some people uncomfortable? Maybe. Should it? And should this serve as a catalyst for a major change in how we, as a society, speak about children with special needs? Absolutely.
This is the most difficult on our children, of course. As parents, however, we feel each challenge and wish we could make things easier for them. We also face our own challenges that we try our damnedest to shield our kids from. Fights with schools that won't provide resources, the lack of said resources, and figuring out how to give your kid what they need without losing all of yourself are just some of the challenges we face as parents of special needs children.
Because I really abhor trauma porn, and I don't want any of my motherly frustrations to be used against communities with special needs, I won't process the challenges of the therapies, the calls from school, and the fears of bullying. Not here. I will, however, share that people really put their feet in their mouth when it comes to my child. I'm as sick of it as these moms, who shared the worst comments they've heard about their children. We can do better, people. We must do better.
"That it was my fault my son is on the spectrum because I vaccinated. I've heard it more than once."
"My son is 10 years old. He has several diagnoses, all of which he is medicated for. Some of the worst judgments I have heard are attached to the paths of medication. It's hard to pinpoint one thing that's ever been said that's been hurtful. There's just too many. The overall lack of kindness and understanding, the looks, the whispers.
I'm so willing to talk and discuss and help people understand, but on the whole it doesn't seem like they want to do any of those things.
Along the way there have been a few who are open to discussion. They are like shining stars in a dark world of adult isolation land. I am grateful for them. But they are few and far between. So much judgment when the differences are not worn on the outside. Some things you just can't see. Some things you have to learn through discussion before you have the whole picture. I would give anything for a whole lot more discussion."
"A couple off the top of my head include comments along the lines of, 'He seems fine' or, 'He will be fine/grow out of it, or, 'All kids do that" (that last one — they have no clue about his most dastardly deeds).
Before getting his school situation to a reasonable place, my boy was performing way better outside of school. The constant refrain from one horrible teacher at IEP meetings was, 'We're not seeing it,' which was implying that I'm full of sh*t, along with all the outside therapists, and that she could not possibly be the problem. BTW, I am a teacher. My two refrains: believe the parents and presume competence."
"As an adoptive parent of a special needs boy, the two hardest things I have heard the most are opposite sides of the same coin. 'If you just loved him more then he would not act out so much,' or, 'If you disciplined him more he wouldn't act out so much.'
My family thinks I am cruel for having him in a therapeutic boarding school and I should just home school him and surround him with love and family and then he will be fine. I have friends who think I baby him too much and need to discipline more. Sadly, all the love in the world and, conversely, all the disciple cannot fix Reactive Attachment Disorder overnight. I have also been asked many times if I want my own kids. So that is hard. [My son] is my own."
"My daughter's teacher said that providing accommodations for her in the classroom would be 'giving her an unfair advantage.' When I replied that accommodations were necessary for the school to meet her where she was at and ensure that she could be successful, she said that unless my daughter was failing, additional help was unnecessary and was too much work for her."
"When [my son] was around 18-months-old, I was lugging him through the grocery store. He was, as usual, crying and spastically arching out of his baby carrier, which was the only thing I could really use to get him from Point A to Point B. An elderly lady approached to coo at what she thought was a little baby. When she looked fully at him and realized that he was not what she expected, she asked, 'What's wrong with him?' I said something about Cerebral Palsy (CP) and epilepsy, and she looked at me, horrified, and said, 'The devil is in him! You have sinned and now the devil is in him!'"
"My sister has Cerebral Palsy (CP). People used to tell my parents that she must give them so much more happiness and love than other children. In front of the rest of us."
"How about, 'We won't do an IEP or 504 because ADHD isn't a learning disability'? Meanwhile, my child had scaled the library shelves and took a flying leap onto the card catalog computer, knocking it to the floor.
"Or this gem, from my dad, 'It's not his ADHD. He just needs to learn how to behave.'"
"How about totally unrealistic expectations for my child who has autism with things like, 'Well, she was fine until you showed up (as she was in meltdown mode) so she's obviously just doing it for attention from mom.' Um, no. She held it together for hours and is now safe to let go. Meltdowns are not tantrums. She is on overload.
How about that autism is just an excuse-label for rude behavior? How about teachers who totally don't get that a child with autism has behavioral struggles due to a skill deficit and/or sensory issue and is not purposefully doing xyz behavior, not following the rules, etc. That one drives me crazy.
The idea that because my child is 'high functioning,' does well most of the time, and that she can't possibly not be doing these behaviors on purpose. and just because she gets it today and has a good day, doesn't mean she will process or experience the same situation in the same way tomorrow.
Oh! Or the, 'Oh, I've worked with kids with autism for years (so I know more than you do about your child)' attitude."
"A little old lady coming up to me when my child, 2-years-old, is screaming mid-meltdown because she hit her head while she was already frustrated. [She was] screaming and crying and me trying to deal with it. This old lady just had to get my attention as if I had nothing better to do than to entertain her desire to judge me, and say to me, 'She's a little old for a tantrum, don't you think?' And I was like, 'She's 2!'"
This author has been there. The thing about having a child with special needs is that it's already a struggle to try to give my child what they need. What most people who make these comments don't realize (or don't care) is that these comments are so beyond unhelpful that, most of the time, they're bordering on heartless and rude.
I've had family members say my child wasn't really autistic they just needed to be shown who was boss. Or the prolific idea with some of my child's former teachers that because they're "so smart" their social and behavioral struggles aren't real.
Suffice it to say with everything I struggle with as a parent of someone with special needs what I really need from others, even strangers, is support. Failing that, I'll take a little bit of kind compassion. If that's still too much, please just ignore us. Nobody needs to feel worse in times of stress.