This specific post is about what we do as a family at home with my children. I am writing because I have seen an increasing pressure on families. I have even seen posts advising ABA therapists to use guilt on selling their services: “what will you regret on your death bed?”
We’ve been through some rocky time periods where we had to confront the fact that tomorrow is not guaranteed. Never once did we worry about whether we had done more ABA. We focused on the laughter, the hugs, the moments of laying in bed and singing “Mr Worldwide” or “I was following, I was following…”
Some of the things will apply universally, across environments, and some may not. Home is different from school. We’re all better off when we acknowledge that. I had to really work to let go of the idea that I needed to be “working on something” all the time. This idea is actually built on cultural ableism: if we do enough, if we continue therapy 24/7, if we work hard enough, our child will get closer to the non-disabled. She doesn’t need me to be her therapist. She doesn’t need me to structure every moment of her day. She doesn’t need to be anyone except herself. She needs her mom. She needs a childhood.
With that framework in mind, here are some of the ways that we have selected to support our children better at home — without ABA.
We start with acceptance. We accept, fully. We accept non-speaking. We accept stimming. We accept passions and routines and repetition. We accept sensory needs and movement needs and an eternal love for Pitbull. This has to come first. Read #actuallyautistic writings. Watch videos unpacking ableism. See a therapist. Phone a friend. Spend time swinging on the playground, enjoying your child as they spin and twirl and chase bubbles. Do what you need to get to acceptance — and don’t write about it on Facebook. Imagine your best friend, your mom, your partner writing about you the way that the world so often writes about autistic children — and without your consent. You wouldn’t like it. It’s dehumanizing and hurtful. Don’t do it to them.
Don’t freak about your child’s timing. Not now does not mean not ever. Allow your child to find their own way. There’s this incredible push to “get kids ready” for adulthood, and it’s striking earlier and earlier. Succumbing to that pressure is a surefire way to spike everyone’s anxiety. It’s why families resort to sticker charts for sleeping on your own, or intensive potty training programs. Doing something at 7, 12, or even 16, doesn’t mean they will be doing it when they are 26 or 36 or 70. Not now does not mean never (and, perhaps a blog for another time, never isn’t the end of the world).
We problem solve with our children regarding “challenging behavior”. A child who is not doing well is a child for whom something has gone wrong. They may be experiencing a health issue that they’re having difficulty sharing. They may be struggling due to inappropriate expectations, a lack of accommodations, or a need for scaffolding. They may simply need some extra connection and time with people who care about them and accept them. We work with our children to uncover the need and develop a solution that meets their needs and ours. For example, we stay with our son until he falls asleep each night. If he wakes up in the middle of the night, we do it again. It meets his need for accompaniment and our need to have our own bedroom space.
We create environments for success. If my child struggles with unstructured vacation time, we bring picture cards and create a schedule for the day. If my child is struggling with long trips to the grocery store, we don’t do long trips to the grocery store. If my child wants to go to the zoo but is struggling with impulsive running away, then we find ways to support their safety (e.g., strollers, kinderpack, wagons, etc). If my child is having difficulty with being safe in their room, then everything in their room is soft and safe and comforting. Our goal is not to do things my way, the “typical” way, the way everyone else does it… Our goal is for our child to be successful. So we change and adapt and accommodate to create that success.
We use restorative practices instead of punishment. We all make mistakes. We act impulsively. We hurt people we love. Teaching relationship repair is one of the most important things I’ve taught my children. When something goes wrong, we brainstorm how to make it right. For example, my son once helped a neighbor mulch their yard in the Spring after breaking something in their yard earlier. It wasn’t a punishment. My son loves gardening and mulching; he loves spending time in the yard with his dad. But it was about making things right with someone we hurt. We could likely all be a little better about that.
We immerse ourselves in augmentative & alternative communication (AAC). We talk AAC. We use AAC to talk with our daughter. We use AAC to talk about what we are doing. We use AAC all day every day. And we see AAC (and all forms of communication) as invaluable. It is as worthy and awesome and beautiful and everything as any spoken word. This can be a huge cultural shift in a world that prizes talking — talking fast, talking loud, talking often. But the thing is — it’s never really about speech. It’s about our feelings, our thoughts, our needs… About connection. And there are many, many, many ways to communicate — with even more ways to connect. Cherish them all.
We love routine and familiarity and comfort. We’re kind of homebodies. We love movie nights and binge-watching Duck Tales. We go to the same stores. We eat the same dinners. We go on the same vacations. We don’t stress about screen time. You may be wondering why this matters, as far as “what we do instead of ABA”. It’s all about removing stress and upping acceptance. There is an unbelievabe amount of stress placed on our autistic children. They are expected to get by in a world that does very, very little to accommodate. All too often, this extends to our family life. We used to be a hiking family, so we bring our kids who are overwhelmed by mountain climbing. Our family expects us at a reunion, so we go, knowing it’s too loud too busy too much. But I refuse to allow my family life to be a source of stress. We adapt. It’s not loss. It’s opportunity. We find new ways to explore our passions, new interests to explore together, new ways to connect that allow us all to be ourselves, fully.
We seek out physicians & therapists who presume competence. When we’ve decided to seek support from professionals, we seek professionals who believe our children are capable. Not capable “within a certain limit”, but capable. Period. We set goals that work on things our children value. We seek doctors who believe my daughter’s “yes” when she says something is painful. We look for therapists who avoid hand-over-hand manipulation and always ask consent. We leave therapists who limit her words or talk negatively about him in front of him. Don’t be afraid to walk away when a therapy doesn’t align with your family values.
We teach. We preview skills before they will be needed. What will be expected and when? For example, we look at maps together before they are studied in social studies. We talk about how long we will have to wait to get through security before we leave home. We model and demonstrate ways to do things. We might show our son how to belly breathe, model new words that have been added to my daughter’s communication system, or bring our children into the process of making to do lists or figuring out what we need at the grocery store. We model these skills again and again, without frustration. We encourage exploration and experimentation, with all the mistakes and problem-solving that comes with. This means that my son can hammer big sticks or plant an avocado seed to see what happens. My daughter can bang on the screen of her iPad as she figures out where and how to get to her favorite apps. We scaffold and accommodate all along the way — what supports can we put in place to allow our children to be more successful? Notice that I don’t say “more independent”. We overly prize independence, when autonomous is more valuable.
We do hard things — together. Sometimes, we have to do hard things. We have to go to the doctor and get a shot. We have to clean our rooms. We have to figure out whether we have enough money when math is hard. We have to deal with the frustrations of life — the ride that was shut down, the brother that makes bothersome noises, the memorization of some key science terms… So we do it together. Even if it seems small to us, it is big to their bodies. We empathize. We co-regulate. And we do the hard things — together.
And, oh, most of all, more than anything, we celebrate. There’s so much joy. There are so many amazing moments that we can have with our children. Different is not less. It is never less. We splash in the pool, while singing “Go, Diego, Go” on repeat for 30 minutes. We watch the same Curious George movie, because the light in my son’s eyes when George dresses up as No Noggin is everything. We joke around with my daughter, whose current favorite AAC phrase is “Got ya!” Oh, we have so, SO much fun. So much freedom. So much flexibility. And I’m so grateful for it all.