What I Didn't Tell You About my Children With Autism
What you need to understand about me and my kids
Being the parent of two littles who happen to be on the autism spectrum has simply taken my breath away. Being Caleb and Colette's Mom has left me breathless especially in the context of me finding myself in situations where I must offer up an explanation or even deliver a small lecture to those who might be sharing that moment with me. So many times, on just today even, I've found it necessary to pause, kindly address someone or someones directly, and inject a bit of my own thoughts into the conversation so as to informally educate the listeners. This will often sound like my reply of, "Well, actually..." or "Doctors specializing in the area have told us that..." and even "No, that's not quite right. What is happening is..." Honestly, I used to find it all exhausting, but nowadays I remain passively prepared to kindly deliver these little nuggets of wisdom to others when the situation arises.
This isn't Pokemon, however, and I can't catch them all, as in all moments with people that could use my interjection or correction. To do so would leave me constantly talking and dictating research findings to anyone within earshot. So sometimes, oftentimes, when someone I'm interacting with gets it slightly wrong in regard to their observations surrounding my children, I go on to leave them none the wiser, choosing silence and peace over correctness -- as many exhausted parents would do. Their error is victimless among my family and their sort of ignorance isn't a crime against me. A smile accompanied by nothing more is what an offender will find themselves receiving from myself.
When I take some time to think back and recall my recent past, a huge number of these occurrences where I quietly allow an incorrect person to remain so have happened to me. Family members, friends, and strangers all have been guilty of getting it more or less wrong about my children, and there is so much that I just haven't said in response to them. No one, including me, likes to hear about something that they got wrong, and I favor peaceful encounters and small, gentle waves over aggression. So during this piece of writing, I'd like to compile a few of these instances of my silent responses and accompany each moment with what all it is that I left unsaid to someone.
I know you suggested that Curt and I get the kids out more, even just to take them along to the retail stores that we shop at. What I didn't tell you is that Caleb's hand must be held at all times, which makes shopping very difficult. He also could easily get disturbed by the public crowd and noise and experience a big emotion while we're all out and while it's more difficult to console and redirect him. We could put him in the shopping cart behind his sister, but he's so big now that nothing else would fit into the cart, and then we'd have to grab two carts and maneuver around the store like train cars just to grab a few items out of Walmart. He also could get restless in the cart, and one of us could end up having to carry him around in our arms for the entire trip.
Aww, it's so sweet to see you baby talking to Colette like that! I know that you love to hear what she has to say to you in her funny language. What I didn't tell you is that she's not actually talking back to you with real responses. She's actually exhibiting echolalia, which resembles true speech, but it's actually just her repeating sounds that she hears without any context attached to them. She has totally said a few curse words at home too, and we didn't bother addressing the situation because we appreciated the comedic relief during a long, difficult day. But do continue speaking to her all of the time around the clock. To do so is very good for her skill development.
Don't intervene in that way! Put away your belt! I know that you disagree with how I just responded to my child's dramatic display of unfavorable behavior just now. What I didn't tell you is that she isn't having a "temper tantrum" or a "meltdown" like a neurotypical child. She is having what her doctor refers to as a "big emotion" and there are a few methodologies that spell out how to respond, and I'm simply adhering to one of those right now. I learned it during a behavioral therapy visit, and It's been effective for us before. A spanking won't help a single thing about this situation. It didn't help with raising me either, but that's another story.
That dish you prepared for our meal is definitely delicious! I had a second serving myself. It's not rudeness that's fueling me to forbid you from feeding some to my child. What I didn't tell you is that they actually take feeding therapy weekly at the clinic in order to learn the correct chewing technique. That food item you want them to eat is too far advanced beyond their current tolerances.
So, you saw me take off my kid's shoes and socks, and now you're alarmed by their feet. I'm aware that my kid has dirt on the soles of their feet, and yes I am keeping up with sweeping the floor at my home (usually). What I didn't tell you is that my child has an aversion to water, wet textures, and small spaces. I can't bathe them in the bathroom. I have to wait and have my husband's help to bathe them in a hard plastic kiddie swimming pool in the center of the living room. And that's why I have to buy a new rug from Home Goods every quarter. I'm not being fashionable. The rug is stained and will smell like mildew soon.
You noticed the tangle in my kid's hair? Oh yes, there's more if you look even more closely. What I didn't tell you is that I have to literally halfways sit on my child or squeeze them between my thighs in order to keep them semi-still and in one place long enough to groom their hair. Plus, curly hair is a pain to maintain generally, even with typical children.
I could easily go on, and I just may choose to do so at a point for some reason or another. It is no walk in the park to walk a mile in my shoes. And because I'm part of a minority of the population as an autism parent, I understand that there will be many, many more of these moments explained above that I will experience in the future. I make it my business to meet the innocent displays of ignorance from outsiders with the highest level of grace and warmth. I appreciate the allies among you who acknowledge the challenges that are faced by autism parents everywhere, and those of you who take your time and seek to educate yourself (even by just reading this piece of writing) about these topics when there is no requirement demanding that you do so. Let's agree to continue striving to create a more inclusive and understanding society, starting with ourselves.
I remember getting dished out ignorance too when I was caring for my son. This just makes the experience more isolating. Unfortunately those will continue to fail to stay in their lanes and will continue to say ignorant comments or act out of ignorance.
I love your voice and honesty! And I feel for you. My son with autism is now 32. I can't imagine having 2 littles with ASD - God bless you and your husband. And oh the water! My kid still hates water and there's no way I can bathe him now. Lol. It's almost comical and I have to laugh or else I'd cry. So happy I found you, Cheiniece!