I’ve been at this for a while. Four and a half years of navigating the sensory needs of our boys with the help of many therapists and practitioners. And as a result, most days I feel like I have a decent handle on things (although it didn’t feel that way in the beginning). There are hard days of course, but even the difficult ones feel far more manageable now than they did when we first embarked on this journey.
But this experience is also incredibly humbling. Even after 4+ years of therapy appointments, adding “tools” to our toolbox and implementing strategies at home, I’m reminded that we’re all still learning. Constantly learning. And sometimes learning feels overwhelming. For all of us.
A few weeks ago, Max had 5 therapy appointments. Three that were our usual speech and OT visits and two that were new. He’s exhibiting some new developments in the area of speech which is really exciting and we’re trying to capitalize on his progress. But with that comes a lot of “new to us” strategies and the expertise and professional opinions of a half dozen or so folks who have been in their respective fields for decades. It’s such a privilege to have access to so many resources, but I ended the week feeling completely overwhelmed as I sorted through recommendations, suggestions, and strategies and tried to piece together what was doable for us (and Max).
The irony is that the new developments are Max communicating to us how he needs to be taught. He’s using his favorite shows (Peppa Pig and Blaze and the Monster Machines) and picking out specific sounds, words and phrases. He has us repeat the phrases being said in his show over and over while he feels the vibration from our vocal cords and watches our mouths intently. After much repetition, he is able to come up with his own approximation of the exact word or phrase he selected. It’s incredible to watch him. He’s so proud of his success and continues to amaze us with his self-awareness.
The strategies being suggested by therapists recently have the potential to positively impact him in several areas, but aren’t necessarily directly supporting the way he’s communicating that he learns. So with a finite amount of time in a day, we’re trying to determine what to focus on, how much to push him, and how to also consider and respect the awareness he has of his own needs.
What I’ve come to understand is that the intentions of therapists and practitioners are typically good and are meant to be in the best interest of the child. But the truth of the matter is a therapist sees a child maybe once a week for forty-five minutes – sometimes even less. They get only a tiny snapshot of a complex child and the life of the family that supports them. And often, they don’t have access to the other therapists supporting the same child so are making recommendations based on simply their own discipline and experience, not necessarily considering what has been suggested by others. That’s not the fault of anyone, but it does demonstrate the holes and gaps that exist in our systems. And it requires caregivers to connect the dots to the extent they’re able.
Parents are with their children all the time. In our case, we’re the safe space, the landing pad, the zone of comfort. And sometimes strategies where a demand is being placed on a child are difficult to implement in the home environment where all they want to do is unmask and bask in the regulation of being in their favorite, safest spot. Beyond that, parents and caregivers are managing households. Often balancing the needs of other children, work, school functions, sports and other activities, family obligations. Is that to say that suggested strategies shouldn’t be implemented at home? No. We’ve found a tremendous amount of success with many things therapists have suggested along the way. But we’ve also had to make choices, sometimes opting out of things that haven’t worked or felt like too much paired with strategies being suggested by other therapists. We’ve ultimately come to the realization that we just simply can’t do it all. And that’s okay. Because every day, we’re bringing our best. And sometimes that’s just what it is.
After a particularly difficult appointment, compounded by the weight of the last few weeks, I chose to take care of myself for a bit. I had a good cry and Max and I took a long drive. We picked up lunch, walked through the grass with our bare feet as we smelled our neighbor’s fragrant lilacs and then relaxed at home for the afternoon – no demands, no work, no strategies. I was completely emotionally exhausted from our appointment, but found joy in watching Max toggle between jumping on the trampoline in just a t- shirt and then running across the yard to swing. All while his face was adorned with the purest smile as he uttered the purest giggles. Salve for the soul.
We regrouped and I was able to take a deep breath and reflect. That particular appointment reminded me that sometimes being a constant advocate for your child is hard. This journey wasn’t meant to be easy, but sometimes it can be a real doozy.
Hang on, friends. If whatever you’re navigating feels hard, it is. Remember to take care of yourselves however you can and always, always feel empowered to advocate for your babies.