During my elementary school years here in the great state of Arizona, there was a certain snail that made frequent appearances as the star of a seemingly endless string of word problems. His progress and his challenges were ever mutating, but the crux of the situation was that he was desperately trying to get out of a well. All was not smooth and steady progress for our friend the snail. No, he would move ahead, only to slip a certain bit backwards, leaving snail trails and countless frustrated students computing exactly how long this time it would take our little friend to make it to the top and over the edge to safety.
Sometimes people think that when an individual has developmental disabilities or Autism that there is a steady incline of onward and upward progress once therapies start. But, the reality at least in our house, is that far too often our experience is more like the snail’s. We are overall moving forward, but many things can cause a backwards slip that we have to troubleshoot or work through to help get Tony’s progress back on track.
Sometimes schedules or routines have to be changed. These disruptions cause a higher degree of emotional volatility for Tony, who like many individuals on the spectrum, prefers an incredibly consistent and predictable routine. Our little man doesn’t work as well at anything until he adjusts to the changes.
When therapists move on to other opportunities, the combined impact of both scheduling changes and the loss of individuals he depends on can wreak substantial havoc to our ability to keep him calm, cooperative, and focused. To each of these former members of our son’s therapy team, this was just their job. To him, however, it is an important relationship and the closest thing to friends he actually has. If Tony has failed to bond with the person in question, the impact isn’t substantial and is restricted only to his frustrations with changes to his routine. However, if he does have a bond with the person, we will face at least a month of dramatically increased behaviors and we have to decrease our expectations for what we can accomplish or work on.
One of the drawbacks of a developmental disabilities services system that reimburses providers less than the private pay market is that therapists are frequently moving on as soon as they have enough experience to qualify for a better paying position elsewhere (for those of us lucky enough to find them or be willing to drive long distances to one who will accept DDD rates). I heard a family member at the DDD provider rate forums mention how her great-granddaughter had over 60 therapists in her short life. Each of these therapist changes- where consistency and a bond matters- is a disruption that can cause progress to stall for at least two months, sometimes longer. These are missed opportunities that don’t come back, and do result in diminished outcomes long-term.
Medication changes, either the addition of a medication, or an increased dose, can cause problems because they change both our son’s schedule, ability to sleep through the night, and the way his body feels. Loose teeth also cause discomforts that disrupt his sleep and ability to tolerate certain things. The emotional state of his loved ones also impacts our sweet son, who picks up on the tensions or dramas of those around him and often reacts with self-harming when he doesn’t understand why people are upset.
If you are beginning to get the idea that forward momentum is a fragile process, then you’ve got the right idea. Many things can momentarily disrupt the success or progress in what we are doing, and it’s kind of like each of the skills we are working on are different snails with different trajectories, distances to go, and setbacks to overcome.
This past year we’ve dealt with an onslaught of progress detours. Whitney leaving was probably one of the hardest. I don’t think our little man could even remember a time when Whitney wasn’t with us and he was so emotional the month after she left that almost everything slowed down or ground to a halt. The ADHD medication came with the problems mentioned above plus for an unknown reason it has caused him to struggle more to feel when he has to go potty, and we have regular spotting on his underwear that we did not have at all before.
There have been quite a few emotional road bumps for his family members, and that has certainly impacted him too. Tony is particularly tuned into my moods, and as we discussed last week, chunks of this past year weren’t exactly fun or joyous for me personally. When I am tense or sad, he will start crying, fussing, or self-harming within seconds…regardless of the outwardly neutral demeanor I strive for in those situations.
We’ve had one schedule change after another with Emily’s surgery, rehab, and honeymooning. We certainly support her in all of that, but that doesn’t diminish the impact on Tony’s world. At the same time, Ms. C, who was doing ABA with our little man in the evenings three days a week, needed a different schedule for her newly expanded family and we weren’t able to offer her the hours she was looking for. That abrupt change in schedule when she left our therapy team combined with the lack of consistency in Emily’s schedule for a few months definitely brought a slowdown. Tony really liked Ms. C and her leaving upset him for about three weeks.
And then there was Amara’s maternity leave which required him getting used to both scheduling changes and a temporary therapist, bonding with Chris (his fabulous speech therapist of 7 months), and the 6 months he went without music therapy because disabilities reimbursement rates make it difficult for them to recruit qualified therapists. We are blessed with Miss Jessi, but of course it took a good month for Tony to establish any sort of tentative bond with her.
And we just found out early this week that we are loosing Ms. E, his awesome physical therapist, to a job elsewhere and we are unable to follow her as a client. She is a skilled therapist, and Tony adores her. We have less than a week to help him prepare for this loss…I expect it will not go well. And in all of this, Tony’s needs were certainly not the only important demand on my time or my heart.
Through it all, we’ve managed to keep our overall forward momentum. Our son’s fabulous ABA team has begun his yearly assessments, and he’s definitely gained some ground. But some things had to be prioritized and some things had to be put on a back burner because all of these things left him too emotional to push forward at the same speed. We’re not as far along as we could have been if some or even all of those things had never happened, but that is life. Things that may not be a significant setback for a neurotypical kiddo can lead to a lengthening of the journey for an Autistic individual.
I could weep and wring my hands in disappointment about all of this, or I could do like the methodically plodding snail from my youth and just keep doing the best I can to help Tony and our family. As the dust has settled on some of these challenges, I’ve targeted areas to strengthen, to retrench, and to storm.
I don’t really know what the top of the well looks like for us or for Tony. I know that many people would consider that to be him achieving typical functioning, but I consider it more to be him reaching his highest level of happiness and capabilities. And at this point, I know to expect some sort of event pulling us into a backwards slide. Certainly I’d rather skip that, but those forces are definitely beyond my ability to control and all we can do is dig deep like that snail and keep pushing against gravity.
