April 5, 2024
April is Autism Awareness and/or Autism Acceptance month. Autism is always present in our home. For us it is many things, both a blessing and a curse, depending on the day or moment. It is definitely a paradox. For example –Autism both gives and takes from siblings. I have watched my child’s brothers and sister become some of the most accepting little people I’ve met. What he teaches them is invaluable. They are his heroes, and I imagine someday when they understand his disability more fully, the feeling will be mutual. They have learned to include and accommodate him without even knowing they are doing so, and they apply this to others without thinking about it. It is shaping them into good humans. He makes us all better. He often also comes first. Sometimes that’s okay, and sometimes that’s just not fair. We leave early because he is overwhelmed or over-stimulated. We avoid certain situations or activities because it would be too much for him. They do more than their fair share to help avoid meltdowns, or because I’m busy dealing with one. They wear literal scars from some of these moments.
Autism is membership into an unique community of fierce mama bears who truly know how to fight and advocate like only autism mamas do. (Not that I’m discounting autism dads. If you don’t think their plight is just as unique, inspiring, and paradoxical, just check out the amazing read by Jason Hague, Aching Joy.) But autism also introduces into a home a kind of loneliness that is unique. The need for sameness and predictability doesn’t allow for spontaneity. Sometimes spontaneous events can be quite successful, but parents know there will be a let down afterwards as a consequence; there is always a cost to consider. The high divorce rate among special needs parents has been talked about, studied – been considered something worthy of intervention for eons, but let’s talk about other relationships. Autism is getting left behind, getting left out. Our kids? Obviously. But us parents? Yep us too. It’s fewer family invites because our kids don’t quite fit into the setting or activity. It’s fewer friend invites because they know it’ll probably be difficult to find the right kind of babysitter for our special kiddo. It’s watching others leave us behind, find new hobbies, make new connections. It’s losing friends you’d never thought you’d lose because your life with autism has become too much (or maybe not enough) for them.
Autism is praying for continued progress while having to highlight deficits just to get the help needed to keep moving forward. To say getting services in place is frustrating is an understatement. We had behavioral therapy for aggressive behaviors – the therapists refused to continue working in our home due to his aggression. I’m still trying to figure that one out. There’s ridiculous waitlists just to get a diagnosis, and then there’s professionals who think they have the right to question that diagnosis. There’s waiting to get service plans written just to be told there are no providers to implement it. Even the “help” isn’t easy.
Autism is a spectrum. We’ve all heard this. Please also hear this – if you’ve met one kid with autism, you’ve met one kid with autism. They really are all different. (And in my opinion, awesome.) For us, it really does look different everyday. There are moments we could pass as neurotypical. Then there’s moments we’re walking on our toes, spinning around and quoting our favorite movies/YouTube clips. There are weeks we eat everything served and weeks we only eat our favorite 4 foods. (No matter what week it is, we always smell it.) There are times we have good language and times we can’t find words at all or we’re vocally stimming. Sometimes we seem to love loud noises and sometimes we can’t find headphones or leave a loud space fast enough. We can have a couple weeks with no physical aggression and then I have to patch the drywall, or find myself praying that my baby girl’s poor face heals quickly from the awful scratch or that big brother doesn’t scar from the bite. Things change often and quickly.
Autism is our life. Its cuddles and giggles, but its also scratches and bites. Its amazing sibling bonds and lessons, and parental guilt that I can’t be all things to all of them. Its lions, spiderman, and dinosaurs, with Lion King and obnoxious YouTube songs on repeat. Its also an appreciation for life that makes us all slow down and enjoy things a little more. It really is a gift. And it really is hard. So reach out to families you know. Siblings need a little extra attention. Parents need the invite. Families want to be included.