I’ve heard it time and time again from other autism parents – our kids go through a roller-coaster of development. Some weeks will be phenomenal, while others will make us want to tear our hair out as we teeter on the edge of going mildly insane.
In our house, we are coming off of a 6-week period of the latter. We’re talking screaming, dysregulated, crying, stimmy hot mess kind of living for about 6 full weeks. I was exhausted. There were days when I just wanted to stay home and let Jack stim all day if he wanted, because I simply couldn’t stand one more moment of crying. It was hard – really hard – and there were days that I felt as though the sun might never shine again.
It was a low point. In fairness to Jack, several things had occurred that rocked his world to the core. We had been approved for twice-weekly speech and OT, which doubled the frequency of each of those therapies. Jack’s original speech therapist could not fit in a second weekly session with him, so we added an additional speech therapist. Then, the biggest change of all – special needs pre-K. He went from a year in which all therapies and educational interventions were one-on-one to a setting in which he was one of 10 children with special needs. In addition, he started getting speech, OT, and PT at school as well, which only added to the roll call of therapists and teachers he would now see weekly.
For a kid that doesn’t handle change, that’s like asking him to climb Mount Everest without an oxygen mask. He was simply drowning in the transitions. The demands were increasing and it was all he could do to keep his head above water – to hold it together each day until his school day and therapies were over.
School let out about a month ago and we’ve been adjusting to the new summer schedule. Luckily, with the exception of the first week and every Sunday – the last of which was a nightmare-like day – Jack has been much better over the past couple of weeks…and by much better, I mean gold-metal quality better.
He’s been in therapy for over a year, but the transitions, feeding, and regulation would still cripple him. It seemed like we just didn’t hit the right combination of sensory diet, therapies, school, and routine to keep Jack calm. For the first time in over a year, Jack is now going into therapies without screaming and crying. He seems happy – really happy – for the first time. He’s been trying new foods and while he’s not transferring that skill into the home setting, it is incredible that he’s doing it in private OT and speech.
I attribute the relative lull of the past couple of weeks to a couple of things. One, I think that the increased therapy schedule does, in fact, help him tremendously. The constant reinforcement in private therapy may be helping these concepts sink in.
Second, Jack is now in ESY and his teacher is phenomenal. I like her better than his teacher during the regular school year. This teacher has taken my sensory recommendations seriously and is actually implementing them! She brushes him and does joint compressions. She puts a compression vest on him. She gives him vestibular breaks. He gets a lot of 1:1 para-pro support.
Also, the dynamic of this class is different. During the regular school year, Jack is one of the lower-functioning kids in his class. In ESY, he’s one of the higher-functioning kids. In a way, I’m wondering if the additional support and focus given to Jack in a classroom that is, on a whole, functioning at a lower level is actually helping him thrive and feel at ease. The activity of his class last year simply was more than he could handle most days.
Third, during the nightmare 6 week period, we placed a renewed focus on sensory activities here at home. It’s easy to neglect your child’s sensory diet during the good times, but the bad times remind us that it is the sensory input that helps make the good times, well, good. That input is critical to helping our kids cope, and drawing our focus away can lead to dysregulation, which in turn leads to all kinds of trouble. After all, our kids’ ability to learn and engage socially is wholly dependent on their ability to maintain a regulated state.
So, we turned back to the sensory diet, but we also switched gears a bit. Jack is such a vestibular and deep pressure kid, but a large focus of our sensory diet at home had been centered around swinging. Then we discovered what has become the new “it” thing in our house – the crash pad – or in our case, a couch or mattress. At OT, Jack has discovered the joys of sliding down a slide into a crash pad, which he hits full force with both feet, flipping him onto his stomach with an audible “plop”. I got to bear witness to this earlier in the week and the priceless smile on his face as he rose from the crash pad to head back up the slide all over again.
And how those smiles – those precious smiles that were so rare just a year ago – can warm this mama’s heart!
Yet, in the midst of a time in which everything seems to be working and clicking – in which we seem to have hit the right combination of therapies, school, and sensory diet – I can’t help but wait for the other shoe to drop. I’ve had other parents – even therapists and teachers – tell me that they didn’t want to burst my bubble, but that this is the way with kids on the spectrum. We oscillate between periods of relative calm and peace into another period living in the heat of battle with our kids’ challenges.
As we approach the end of ESY, I await the transition that will bring and the unstructured time that will create for the rest of the summer. I know that we’ll have to troubleshoot again at that point, finding some way to fill that void in some way. I hate having to anticipate and dread the everyday – like a trip to the store, a break from school, or a quiet weekend day – but so it is when you have a kid with autism and sensory issues.
How I wish that I could simply sit back and revel in the happiness rather than waiting for the next onslaught of the storm. Maybe one day my own anxiety will fade, but for now I know that each wave of calm is temporary and the future will bring continued – yet ever changing – challenges.
So is our lives.