A Million Tiny Pebbles Build A Mountain Of Hope

I often write about the realities of autism. This is mostly because I don’t like how it is being whitewashed in the media, which minimizes the struggles and challenges of families living with autism. But this year, I really wanted to focus on hope. Because I really believe that our kids are “In there” and that a little bit of hope reminds parents of this and helps them keep going on this mountain of a journey. 

Some kids have recovered from their symptoms of autism. And while they may seem like mythical unicorns, I can tell you from my work in the autism community that they do exist. It is rare, and I will admit that I know a lot of familes. But, I can count the kids I personally know who’ve recovered on more than two hands. 

Not Recovered…

My son Christopher has autism. He is on the pretty severe side. He is far from recovered. But like autism, recovery is also a spectrum. And we are slowly, slowly moving forward. Even though my son still has a long way to go; even though he still doesn’t have conversational speech; even though I still have yet to hear, “I love you Mommy,” we have made progess. And I have to make a conscious effort to note that progress and celebrate it. I have to focus on our wins. 

So I want to end Autism Awareness Month focusing on these wins. They didn’t happen how or when I expected. We may not have major milestones, but we have a million tiny pebbles. That may take longer and make it more difficult to build our mountain, but we still keep going. 

…But Lots Of Wins

Here are a few of the wins along our autism journey – things that really made a difference in our family and in our lives.

Eating

Honestly, this is so far behind us that I barely remember it. But, at one point it was the biggest problem in our lives. If you read this blog, you already know about it. Christopher was not eating. Not eating anything nutritious anyway. We had removed gluten, dairy, and soy from his diet (and his red cheeks and ears went away) and he would only eat rice cakes or potato chips. No meat, no fruit, no veggies. I was spending a fortune juicing vegetables and I could barely get that in him – especially if it wasn’t in one specific sippy cup. My absolute breaking point was when I tried for literally hours to get him to eat the tiniest sliver of chicken. He won that battle, and I never thought my child would eat. 

When I was pregnant with my daughter, I knew we had to do something. I could not worry about this while taking care of a new baby. So, we put Christopher in an ABA-based feeding clinic while introducing the GAPS diet (which is very healing to the gut). To say that I was doubtful it would work would be a huge understatement. Fast forward a month later to my child eating pâté and kale chips. He is now the best eater of all my kids, and his gut has healed so much. 

Potty-Training

Christopher was potty trained around age 8, and I honestly can’t take any credit here. We had tried different things in ABA and nothing worked. He would sometimes pee on the potty if we took him, but he would never initiate going. When finally he did learn, I wasn’t even actively working on it. And it happened like a light switch. We had just completed a round of homeopathy, so my best guess is that this cleared something and allowed him to notice the sensation of having to go to the bathroom. 

So here’s the TMI story of what happened: My husband walked past the bathroom and saw poop in the toilet. He asked me if it was from me. And I was like, “Ew, I’m a girl, I don’t poop.” – just kidding. But I do, you know, use toilet paper and flush… We were baffled. It honestly did not occur to us that it could have been Christopher. Then we saw that he was naked – and sitting in the basket of clean laundry I had just folded. So, that was the happiest I ever was to wash a ruined load of clean laundry. And I honestly hope that one day Christopher recovers enough to be mortified that I shared this story on the the internet.

Going Out To Dinner

So, going out to dinner for autism families can be a big deal. You know how criminals or people on the run have a “go bag”? Well, autism families often have to have one for outings like a relaxing family dinner. It might have snacks, drinks, a sippy cup, an extra set of clothes, noise cancelling headphones, a blanket, an iPad, a favorite game, a chewy, some fidgets, coloring books…. Are you seeing why our family dinners might not be so relaxing and why it might just be easier to stay home? 

Going out with Christopher was almost impossible. He wouldn’t sit still and he would scream. He would try to climb on the table. Sometimes he would hit or kick. He might grab someone else’s food off of their table (and then throw their own spaghetti at them – we’ve had some good times). We tried to avoid going out as much as possible. But sometimes there was a family event that my husband and I would both have to attend. And that meant we’d take turns walking with him outside or driving him around while the other one ate. 

One summer a few years ago we tried a somewhat controversial treatment. I was hoping for speech but I instead got calmness. (Like I said, things never happen exactly the way I expect them to.) So, my husband and I were actually able to take our boys to a sensory-friendly Broadway show. On the way home we were starving but we weren’t sure if we should dare to try going to a restaurant. I’ll always remember that day – our first successful family restaurant dinner (and, added bonus, with food from the menu and not stuff we had to bring in a cooler ourselves). 

Now we go out to dinner often, and I try to remember and appreciate how difficult that once was. 

 

Christopher is making progress all the time. When I was sorting out clothes for summer and getting rid of the clothes that no longer fit, he put them away his drawers (like, all of them – including the ones I was getting rid of – in the same drawer, but still…) He likes to read One Fish, Two Fish to me now, and nothing makes him prouder than positive feedback for his reading. And just this week he spontaneously came over to me, wrapped his arm around my neck, pulled me to kiss my face, and then ran away. 

A Million Little Pebbles

No, we haven’t reached Recovery Mountain yet. We have a long way to go, and for sure we still have our share of difficult moments. But I love each of those little pebbles. 

I obviously can’t promise an autism recovery. But if you try, and you work hard, and you believe, your child will make progress. Make an effort to be aware of it, and to celebrate it. Focus on your and your child’s wins. We find miracles only when we start looking for them. 

Au revoir, April. And while we wait for the blue lights to come back on next year, remember to light up your own world with HOPE.