Autism Advice

 

Yesterday I shared on my social media, a little slice of one of my harder days. The response from so many of you was so welcome, but of course, there were always the messages with unsolicited parenting advice, the majority of those whose children are neurotypical, if they even had children.

While I appreciate your concern, there really isn’t a comparison between your child’s “tantrums” and mine. Your child may be a picky eater, but it’s not the same as Everett only eating 3 main foods. And no, withholding snacks doesn’t work. Oh your son bit you once and you gave him essential oils and it never happened again? Great for you. You’d never leave the house on a “bad” day? Good for you, unfortunately my family still needs groceries and I still need my sanity.

Until you have a child on the spectrum, you literally can’t put yourself in my shoes. Even if your neighbor’s cousin Terry has an autistic child, that you met at a party once 5 years ago, it still doesn’t count. Also, meeting ONE autistic person doesn’t make you an expert. It’s called a spectrum for a reason. I also don’t want to spend hours educating you on Everett’s specific traits that land him on the spectrum. Sometimes, even saying he has autism still burns my tongue. I don’t always want to remember that hidden Scarlett A burned onto his chest by a diagnosis. I’m still occasionally mourning the child of my preconceived dreams.

“Everything will be okay”/just fine”

I get it. I totally do. However, many a mother in my special needs groups have said that this basically translates into “you’re overreacting” or invalidates their feelings at the time. It makes them feel like their fabricating red flags or interpreting their child’s actions incorrectly. It says that I don’t truly know my child or understand his behaviors.

I understand your need and desire to try and make us feel better. Truly, I do. You may not possess a lot of knowledge about autism and still want to give support, but I promise you there are better ways.

It’s God’s will/plan.

While religion doesn’t personally offend me (I’m still finding my path), I know many secular special needs parents who take offense to this. “So your sky deity has deemed that I’m not worthy of a neurotypical child, so therefore I must suffer through watching my child struggle every day? For what? To make me stronger? To test my faith?” So please be aware that your beliefs may not sit well with others.

So what can you do? Love us. Support us. Encourage us. Offer kind words and if you’re feeling especially generous, offer babysitting! Here is a great example:

Remind us that there is more to him than his diagnosis. Remind us that he’s still a sweet, smart, empathetic, cheerful, and loving child. That he’s making great strides. That he’s becoming an amazing brother. Remind us that we are badass momma bears.

Being there is enough. I promise. I’m lucky. I have a tribe. My tribe is diverse and I’ve weeded out the toxic friends. Each member of my tribe helps provide me with love, balance, and perspective.

I wrote this blog today, not to make anyone feel bad, but to help give perspective. I’ve always tried to be brutally honest with my journey, and funnily enough, I started writing today’s blog to update everyone on Everett’s progress and this just poured out. I hope today’s blog helps give you insight without offending.

Much love,

Crystal