This is a very personal read.
These are probably some of the most raw and deeply felt words I’ll ever say out loud. Opinions are frivolous and disproportionate and they contrast because each person’s personal journey with a disability (whether a personal journey or a loved one’s journey) is not the same, and this has begun to weigh, and weigh heavily, on me.
It’s a sensitive subject.
And I’m sensitive to it.
Let’s start with a game.
A little ice-breaker, shall we?
Let’s play “never have I ever!”
Never have I ever questioned a mother’s intention over her children.
Never have I ever judged a mother for maintaining to properly care for her child, even when it goes against mainstream parenting.
Never have I ever ridiculed a mother for the decisions she makes regarding her child, in whatever context that applies, to protect or seek out help for the benefit of her child and their future.
Maybe you’re thinking that’s not such a fun game after all. Maybe you can’t say those sentences with complete and total honesty. Maybe you’re wondering what in the world is with those sentences, they’re unfamiliar, because they’ve never approached your doorstep.
I wish they were foreign to me. I wish I’d never opened the door and met them personally. Staring into the eyes of that kind of contempt and distain, that type of judgement for choosing what is right for the well-being and betterment of your child… it’s deplorable. And I haven’t even touched on not being credited as a parent the common wherewithal for knowing what’s best and what’s right. Respect in it’s simplest form, like holding the door for a stranger and returning a “you’re welcome” to a “thank you.” Simple credit given to a parent out of respect because they are just that- the parent.
I have been verbally attacked as a special needs parent and each time, it leaves me speechless and upset but also in a state of bewilderment- as I just cannot fathom this type of viciousness. My very first experience with this type of appalling behavior is with extended in-laws over not spanking my daughter on a day that she was having a very hard time adjusting because we had just taken into our custody (suddenly, without warning or discussion) my husband’s 3 nieces, bringing the household total of children to 6. (After two years in our care, the girls were replaced back with their mom and grandmother.)
Six children under one roof can be chaotic for any family.
My daughter, 2.5 years old at the time was under a doctor’s care and watch for spectrum characteristics, sensory processing disorder and myriad of other issues- later leading to an Autism diagnosis and severe ADHD-combined type. That being said the family member was publicly verbally assaulting me for not “whooping her _ _ _” because she was having trouble adjusting and coping with the newly added family members. Her world was shaken. Her structure was gone. Her home was in chaos. New people were sleeping in her room. I never said she was misbehaving- but I was cussed out and told I needed an _ _ _ beating and that she (my daughter) was “going to suffer if I let her continue to act out on her disease.”
I know that type of response and commenting is unfounded but even with it not making a stitch of sense- it still hurt.
That kind of ignorance hurts. It hurts her and other special needs children, because people genuinely are this oblivious and uneducated and it only leads to the mistreatment of children in this form and manner based off an uninformed biased opinion and not the facts nor does it tend to or address the real root issue and cause. In this case, overstimulation due to her sensory processing disorder because her entire world was rocked by more children in the home and it was loud- and chaotic.
And it hurts the parents because it’s only a scratch on the surface of what we have to learn and deal with, to then repeat to every single person asking questions or making unfounded comments, who most likely won’t listen, for it to only be compounded on by other hurtful comments and judgements- a cycle that is never-ending, exhausting, and heart-breaking. My skin hasn’t toughened at all in 8 years. It always still hurts the same. It’s like a wound that won’t heal. This part of being a special needs parent doesn’t go away and it isn’t talked about.
Because it’s a sensitive subject.
Because it hurts.
“He doesn’t look Autistic.” -Preschool Director.
“He’s doesn’t hurt himself enough to be in our classrooms.” -Special Needs Academy
“He isn’t literate enough to attend here.” -Prestigious Private School
“I’m sorry but we aren’t accepting any ‘special friends’ at this time.” -Prominent Christian Preschool
“You need to put her into a room with nothing and throw some food amd water in there every once in a while and leave her to work out her own behaviors.” -Pediatrician
“You can’t negotiate with terrorists and you can’t argue with a drunk. She has the same mindset. There’s nothing you can do.” -Child Development Doctor
“ADHD isn’t real, it’s just an excuse for bad behavior.” -Family Member
“Why does she act so weird?” -Family Member
“Do you have to always remind everybody? It’s not that important.” -Facebook Message
“Isn’t there some kind of medication or therapy out there to fix all that?” -Family Member
“Why hasn’t he grown out of it yet?” -Family Member
“You really should make him talk and answer people, otherwise you’re allowing him to be rude and teaching him that it’s ok to ignore people.” -Family Member
“Why can’t you just let them be ‘normal’? Kids are kids and all kids act like this at some point, we just don’t talk about it for attention.” -Facebook Message
Yes, kids are kids. We all know that every child is different. When I used to think about my children and how they’d be and what they’d do, they were all different but with striking similarities. It never occurred to me that I could birth three extremely different children. But that’s what happened.
I have three children. My oldest is currently 13. He’s going into the eight grade. He is an honor roll student. He has a brilliant math brain. He is sweet, tender-hearted and kind. He’s a sports fan, playing soccer for a while and baseball since t-ball. He is independent. He is a regular 13 year old boy that would meet or exceed every milestone and all the checklist criteria for his age, although that aspect of life hasn’t been a part of his life since the birth- 24 month old milestone markers with his pediatrician. He, for all intents and purposes of this topic, is a regular boy.
My daughter is my middle child, she is currently 8 years old. She is severely ADHD, with what is titled “Combined Type.” That means she has both Inattentive ADD and the Hyperactive ADHD. She also has an Autism Spectrum diagnosis. She has dyslexia, requiring extra help in reading but aside from that her capacity to learn, thus far, doesn’t seem too impacted, however her ability to process is impacted. For example: She has a high tolerance to cold and but gets over-heated in an instant which has caused many a meltdown. As she’s gotten older, we’ve worked on using her words to let me know she’s hot in an effort to limit the disruptive outbursts. Communication in whole as she’s gotten older has been key. We work together to know her triggers and to avoid them. We work together on how to handle and get used to doing things that may uncomfortable but are necessary, like wearing shoes. We avoid what doesn’t work, and accept (gratefully) what does work. She can work independently after given directions, she plays independently and self- maintains, for the most part, as any 8 year old little girl would. It’s amazing to me because her first years in the world were the hardest years for me out of all my children. She never slept, always moving and going and I thought it would be the death of me! She has come a long way. Credit needs to be noted: God, first and foremost, her praying family to do whatever it took to help her find her path to success, her therapists and doctors and medication.
My baby is currently 7 years old and when I talk about my child with Autism he is the one to whom I’m usually referring to. He needs daily support in most all areas. His cognitive abilities are extremely delayed. His speech and language skills are extremely delayed. His understanding and processing abilities are extremely delayed. He is approximately years behind his developmental age level. He has level 3 Autism and Inattentive Type- ADHD along with generalized depression disorder, which in not uncommon with Autism or ADHD. He is verbal but you may not understand him- that is if he talks to you. He is timid and gets scared easily. He likes to dress up and wear costumes. He likes to play and live in pretend. And that’s ok. Play is a way of learning. I’ll take it. He needs help dressing correctly, bathing, and brushing his teeth. He can write his name. That is the only thing he can spell. He just recently learned to say his ABC‘s *almost* correctly. He can write his numbers 1-10. He plays just like all little boys and usually that’s where the confusion starts. As if not having the inability to play is the make or break of having any type of neurological disorder.
It’s hard. It’s so hard. Probably not at all in the ways you’d guess, either. As hard as it is and as sad as it gets, I wouldn’t change it if I could. This is our home. Between the rock and the hard place, the sadness and the triumphs, the repetition, the schedules, the meltdowns and the uncontrollable laughter- this is where we live. And because this is where we live, I felt like I needed to write this.
So saying stupid things. Please.
Read! There is really no excuse for not being able to some gain basic information and understanding about anything and everything these days. If you don’t know, please ask- tactfully and respectfully.
I felt I needed to speak up. I want others to learn and understand so that are children will benefit from a brighter and more educated future, not an opinionated and biased one. The future of my children depends on people coming together, in whole, as a community- and that won’t happen without more awareness.