LOL like the viral meme all over facebook, I thought this was an important post for all of my parents of developmentally delayed/autistic/adhd children, especially during the holidays which tend to be stressful already. The road to healing our babies through gut health is not a straight one. It’s full of winding turns, roads less traveled, decisions, worrying, incessant thoughts.
After all, we want our children to be the best version of themselves that they can be. We start to see progress and expect it to just keep going every day, more and more improvements. But sometimes, it is not that way. Sometimes, one behavior goes through extinction (when there’s a heightening right before it disappears), and then others pop up. It makes us question everything we are doing. I am here to tell you, that was us this week. We had a very stressful week and encountered some very worrisome symptoms that made us question everything. You see, when you are a special needs parent, not only do you research every waking minute, you are also hyper vigilant and alert to your child’s every behavior and word, or sudden lack thereof.
On Sunday, Nathaniel was acting very strange. All of the verbal skills he had acquired since I started our intensive early intervention/gut health quest seemed like they were quickly disappearing. He wasn’t eating his favorite foods anymore, he really didn’t want to eat much at all anymore. His teacher told me that I needed to start packing him a lunch on pizza day because he wouldn’t eat it anymore, pizza day was his favorite day! We of course went to doctor, got some testing done, and thank God, after several days of whirlwind heavy hearts and bracing for the worst, it turned out to be nothing serious.
Nonetheless, this post is an important one. Progress is not always linear. In times like these, I have realized the importance of your “healing tribe,” our ABA therapists, speech therapist, preschool director and teachers, chiropractors. People I sent videos to, vented my worries to, people who have the experience to reassure me and explain the various things this can be. These are people who didn’t sigh or overlook a symptom or a behavior or brush it off, people that listened to me.
I cried in my car thinking of not just the progress I thought was stalling, but of worse things that could be happening in his little body. When you have a young child that can’t adequately communicate every pain to you, it is scary to think you could be missing something. The week was filled with anxiety, tears welling up in my eyes after I would drop him off at school (I would never let him see me crying so as not to worry him). We live in a virtual world, where every post is about a heart wrenching situation with a child or person. Because of this, you are already in a constant fight or flight mode. Then, when you get something that warrants concern, your mind goes to that scary place. Thinking what do I do. What did I not do? What should I do next? When you call and neurologists don’t have appointments available for 6 months, what do you even say to that?
Last night an amazing, nothing short of magical, happened. There were a couple of “typical” children playing with blocks. Nathaniel went right up to them and started playing as I talked to another mom friend. He put a block on top of the tower they were building and said “I put a block there” and I overheard other chatter from all three of them back and forth. Then I heard giggling and laughter in unison, then I saw they all had their hands in the bin of blocks together and were shaking the blocks causing loud noise and all cackling together. sitting inches from each other. This was the first time, he engaged with children his age unprompted, naturally, what seemed like effortlessly as if it had always been this way. To be honest, the tears are welling up in my eyes just remembering his cackle with these kids. One of Nathaniel’s symptoms is following lines and patterns, it manifests itself usually in him following chair rail back and forth over and over in the ABA office. It has improved with time dramatically, but it is still his default behavior in an unfamiliar setting.
Today was the first time, the first time EVER he did not follow any lines, or even look at the chair rail!That was some intense ornate chair rail LOL, I was even eyeing it! He stayed engaged with these kids laughing and building and chattering back and forth.
Then, when that magical moment (it lasted about 10 minutes!) ended, he started jumping up the walls hyper, yelling an annoying song, running around until he fell over and throwing himself on the floor. He is never hyper like this or acting like a crazed wild animal LOL. This is when it hit me- he just made this mind-blowing social break through tonight, now his brain is needing to compensate with something else. I thought who the hell cares if he is acting a little wild, he just made friends and played with kids appropriately without me having to coach him at all or hold his hand! This is freaking huge!
The road to healing is not a straight one, it cannot be measured, we don’t have an “undiagnosis” day. Symptoms will heal, symptoms will pop up. Each progress made is a new brain connection, is new rewiring that is going on. This is not a sprint my friends, it is a marathon. Neuroplasticity (the ability for the brain to rewire and heal itself) is an amazing, yet still mysterious thing. Stay the course, be resilient, and trust your child and their bodies. Never give up. When you heal from the inside out, you can’t always see how it is all coming together, but then you have these magical moments where it is clear as day. Most of all, know you are not alone, we are all working hard together.
IDK who needed to hear that, but I am glad they did. Love to you mamas during this holiday season.
