Picture my husband and I as coaches giving pointers and pep talks, modelling skills, and many, MANY times referreeing disputes and misunderstandings between teammates… especially during the summer months!
He and I, we parents and caregivers are the constant support and preparation you don’t see. Don’t forget we are the schedulers, bathroom attendants, drivers, co-sleepers, chefs, and entertainers too!
Parents and caregivers are alongside their autistic person, kiddo, familiy member every day, all day in most cases. It is important that I break out my Advocacy Microphone when a well-meaning person says “Wow, I wouldn’t even have guessed your kiddos are on the spectrum. They are doing so well,” or we see a “low-support” label on an IEP or State services form.
We cannot head outside for 5 minutes to alone to water the garden without hearing all-out screaming through the living-room window UNLESS they are watching a show on tv we don’t want them to watch, then they are on their best behavior.
We anticipate problems like disapointment in cancelled or changed plans, endless shopping for clothes that feel right and are weather appropriate ahead of weather changes, anticipating hunger, thirst, bathroom, and emotional needs using past experiences.
Here are a few examples of recent anticipation preparation …
- We need to figure out how to help my child wear underwear so we can then prepare for puberty. What if we aren’t with the girls when they get their first period? How can We prepare together ahead of time?
- Bring a change of clothes in the car at all times for all children. One child may have a bathroom accident because they do not want to miss out, another child may not like the feel of their shirt in the afternoon when we go outside, and the other child may play in mud puddles, have an accident, take their clothes off and hide them, draw all over themselves, put their clothes on an animal… … …
- Remember to ask my sister if we can go to Pizza Ranch when we are road tripping. We shouldn’t do McDonald’s since the girls eat chicken nuggets for at least one meal each day. Eldest Child will ONLY eat the chicken, fries, and Mug Rootbeer, Middle Child will eat the pizza, Youngest will eat the fries and maybe potatos.
- Ask my sister if we can go to Smalltown Pool instead of the huge adventure park mini-golf with loud noises, blaring music, overcrowding, a brand new experience with mini-golf, and a golf-club that may become a weapon and also unknown restaurant
- Text Message *Ping* Hey! Here are the venue options for the children’s menu. I am asking you what we should serve since ya’ll have the pickiest kids. Anne says: “I’ll order one of the adult chicken and chicken tenders and mac n cheese please.” Personal thoughts: I will also be bringing our own snacks and food in the car in the chance it’s not the right mac and cheese or if the chicken tenders are the wrong shape, breading, smell, the ketchup is different… … …
Parents and caregivers are expected to step into many roles as soon as a diagnosis is determined to provide experts care in occupational therapy, physical therapy, coregulation, IEPs (individual education plans), legal issues, medical care, and others all as soon as a diagnosis is determined.
An instagram post from @childhoodelevated perfectly summarized my huge feelings about this topic this week:
“If an autistic child appears to be “low support needs” because a parent is constantly meeting those need by co-regulating, initiating tasks, scaffolding, anticipating sensory triggers, modifying the environment –
that isn’t low support needs.
That’s a high level of support being made invisible.”
~ @childhoodelevated
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