2 Steps Forward, 3 Steps Back: Raising a Child with Autism

I was talking with another mom who is also raising a child with autism about the struggles and let me tell you, who boy, they are real.

It’s not just those difficulties that pop into the minds of people when they think of autism, like meltdowns or the dangers of a child getting lost. It’s more than that.

In the last year, I’ve noticed moms whose kids are healed, nearly healed or at least “doing way better than mine,” see problems. They come in the form of:

• New stuff not seen before
• Regressions
• Illnesses taking an unexpected turn
• New toxic exposure suddenly brought to light (as in, “You’ve been giving my kids SKITTLES!” Been there…)

This is the “in between,” twilight world that we parents of kids with not-so-high-functioning autism walk in. You can talk about neurodiversity until you’re blue in the face, but there’s nothing like suddenly getting a note home that reads, “Your daughter bit/hit someone today” or “Your child banged her head intentionally this morning.” Especially when you haven’t seen that behavior in years. Then the panic sets in.

After about 5 seconds of symptoms that mimic a heart attack (inability to breathe constricted chest, sudden indigestion of lunch), you get a sinking feeling and you question EVERYTHING, from “did I screw up her diet” to “is she being bullied or abused” and absolutely everything in between.

So you’re hysterical, picturing your child like she was 5 years ago before you realized autism was medical, and then you look over to your actual child, right now, and there she is putting her things away, prepping her own snack, completing her after school chores. She seems fine – but why did she bite?

The truth is, you may never know. This is the reality of autism, even for those of us on years and years of a healing journey. Two steps forward, and 1, 2 or sometimes 10 steps back. Detox brings regression. Stress brings regression. Unknown infractions brings regression. Exposure to new toxins, new situations, illness can all bring regression for kids who are not yet healed.

On and on and on.

I’m not hopeless, though. I’m actually very hopeful, but I understand these things on a level that some parents may not be able to understand. I also don’t doubt that there are parents with neurotypical kids who experience this kind of backslide in other problems that their children are dealing with, but for the ever-growing community of parents raising autistic children who are not so high functioning, we have a common bond that I hope draws us together.

9 Ways to Help Parents Raising Kids with Autism

That said, we need help. I’m very blessed that I have faith, friends, family, income, and discovered nutrition and homeopathy and how they can help my child. I have no doubt that God has a wonderful plan for my daughter’s life. I also know a lot of wonderful  autistic children who can enrich your life if you let them. Their parents probably need help, and if you do help them appropriately, you’ll not only be rewarded by the joy of helping someone, you’ll also be helping an amazing kid thrive.

If you know such a parent, here is how you can help them:

1. Give them physical help if you think they need it. Ok, I’ll admit it, we can be a pretty prideful bunch but if you see things slipping out of my hands while my kid is upset, I wouldn’t mind at all if you helped me not to drop them. Or let me go ahead of you on the check out. Or held a door for me. Once upon a time, those were common courtesy things you’d do for any mom, but now I see those good societal graces disappearing. Still, something that small can really make the day of a parent who is struggling.
2. Don’t assume the worst. At least, reserve your judgment until you get home and for Pete’s sake, don’t make a stinking video about “that lady with the misbehaving child”! You may be thinking, “But I’m sure the woman I saw had a child without any challenges, she was just a bad parent.” You don’t know that. There’s a term, “invisibility disability,” and it describes lots of kids on the spectrum. The last reported numbers on instances of autism in the U.S. is 1 in every 68 children, and that number is 5 years old, reflects kids born in 2002, and doesn’t reflect undiagnosed kids. That is a pretty BIG percentage of kids on the spectrum in and around you while you’re out and about. Don’t assume the worst, assume the best instead. (It’ll go a long way to making you feel better too.)
3. Don’t offer advice. You’re probably itching to say something. “I heard about this treatment” or “Don’t you think that’s a bad idea” or “Don’t worry, it’ll get better” or whatever thing sounds kind in your mind. To us, it may smack of cluelessness and selfishness and superiority. I’m not one to take things that way – I have way bigger things to contend with then taking offense when someone is trying (and failing) to be kind, but it can be a big trigger for a mom who is struggling to keep it together. And on that note…
4. Caregivers are struggling to keep it together, so be kind. In 2009, Disability Scoop wrote an article, “Autism Moms Have Stress Similar to Combat Soldiers.” We have higher stress levels, more judgment to deal with and more long term worry than even those raising kids with other disabilities. That is true no matter where a child is on the spectrum, because parents raising kids with high functioning autism can’t always get the help, support and diagnosis they need either.
5. Pray for them. Because wow, we need prayer. We do. This gig is tough and I don’t know any parent who hasn’t at least flirted with PTSD at some point. It’s always on my radar not to overtax myself because it’s easy to say, “I’m not doing enough” or “It’s totally my own fault she’s not healed/that she has autism!” We moms are especially hard on ourselves, because, like all moms, we want our children to have the best lives they possibly can. Our kids have roadblocks that others don’t understand and, worse, are highly prone not just to bullying and exploitation, but to depression and anxiety from a very young age. Our families need your prayers!
6. Volunteer to help autism parents. Make a difference in someone’s life. I’m making this distinction because all the walking in the world for Autism Speaks won’t help many families. Find organizations that need volunteers for respite or babysitters or donations for iPads and assistive technology. If you want to donate money, give to a group like the National Autism Association, whose Big Red Safety Box can help protect kids with autism, who are prone to wonder. The latest case of “elopement” was RIGHT IN MY TOWN. A little boy wandered away from his parents’ New Years Eve party (which I have no doubt they hosted so they could include their son) and was found 2 days later floating in the Lehigh River. This happens A LOT and is a big source of our PTSD. The NAA needs your support to help save kids’ lives.
7. Smile. Seriously, if you can’t help a person because your own hands are full, that’s ok, but you can smile. It will help us forget all those dang judgmental stares we get when we are trying to wrangle our kids into safety and calmness. ONE smile from ONE person when I’m going through that stuff literally allows me to walk on air.
8. Compliment my kid. If you should happen to see my kid do something good, kind, smart, worthy, or anything that exemplifies good behavior, go ahead and compliment her. Not in a condescending manner, mind you, but in a kind way. Things like, “I wish my kid could <fill in blank> like that!” or “After you left, she came up to me and said she liked my hair and gave me a hug!” Because our kids can do that stuff, lots of amazing, wonderful things, but it’s not always easy for them.
9. Don’t “generalize” our kids. The saying goes, “If you’ve met one person with autism…you’ve met one person with autism.” Our kids can do all kinds of things and range all kinds of emotions. I’ve heard lots of crap, like “autistic kids don’t have empathy…aren’t spiritual…are super logical…can’t talk…are disabled.” Those are all stereotypes and if there’s one thing I’ve learned about autism, it’s that the stereotypes don’t fit. That goes for associated conditions, too, like epilepsy or sensory challenges. Not every kid has either, even though many do have one or both. Our kids are engineers and inventors, singers and musicians, academics and creatives, athletes and artists, logical and empathetic, introverts and extroverts, kind and generous, helpful and loving.

And don’t let anyone tell you different: our kids have big hearts. Sometimes, though, they have a forest of STUFF standing the way of their brains responding to that love the way we’re used to seeing. With interventions, therapy, practice and a whole lot of prayer, we’ve advanced our girl from a miserable child with crippling limitations to a joyous soul who loves singing, dancing and cooking, kicks ass in math, and loves to play in the Special Olympics. She adores comic books and is a really good mom to her cat. She can’t always say “yes” but she can do what’s required of her most of the time without difficulty.

And she’s a hugger. She’s also good at giving me and her dad appropriate kisses, like at bedtime, but often, I’m only allowed to kiss the back of her hand.

That’s ok by me. I know she loves me. I love her too. I’d do anything for her and I won’t stop trying to help her live a good life until I’m gone from this world.

This is my kid and she’s worth it.