As I mentioned in last week’s post, Tony doesn’t react to all losses in his life the same. Nearly a year and a half ago, we moved some of Tony’s therapy services to our side of town. At the time, we were able to find clinics that could provide both occupational therapy and speech therapy in the home (he gets one hour a week of each service). Since that time, he’s had three different occupational therapists. 

The first, Miss Rachel, had to move out of state after a few months for personal reasons. She was so patient with our little man, but Tony didn’t really have much of a bond with her, so he didn’t react noticeably to her absence. Since we didn’t find out she needed to leave until after the last time he saw her, it didn’t change his performance at therapy either.

For Rosette, who brought in so many super cool creative little activities for working on his fine motor, when she decided to take a position with a local school, it wasn’t possible for us to follow her as a client. She was very considerate, and told us as soon as she knew she was leaving, so we had three weeks working with her after she notified us.

Sometimes people don’t realize how important having a little extra time to prepare an Autistic individual for these changes can be. Tony, like many individuals on the spectrum, struggles with these transitions and needs extra support to help him move more successfully from one change to another. I am always grateful for providers who recognize this and are able to grant us as much notice as possible when they need to make these kinds of changes for their own lives. Especially since his struggles don’t just involve crying and tantrums, but increased attempts at self-harming. Having that extra time can make a world of difference in how well our son is able to process and accept the change in his life.

Now Tony was starting to bond with Rosette, and I don’t think he was too keen on her going. I am certain he didn’t understand the “why” for this transition either, and I can only speculate that it may have felt like a rejection to him. So he spent the last three weeks totally ignoring her and giving her the hardest time about doing tasks. He frequently would run and hide in the closet under our stairs. I felt badly for her, but appreciated the extra notice nonetheless. And, I was grateful to have had that time to help him prepare.

By the time his current occupational therapist Miss Amara started, he had habituated hiding in the closet during OT, and this was causing a fair number of disruptions. I eventually ended up feeling like the only way we were going to nip this in the bud was to put a latch on the door that he couldn’t reach. Tony’s been working with Miss Amara for a few months now, and during her time we’ve seen a number of positive changes with his new ADHD medication.

Occupational therapy is generally one of the more structured therapies. As far as Tony is concerned, the only good type of structure is the routines he wants to make for himself. Anything else is worthy of the stink eye at best, but will almost certainly warrant a lack of cooperation unless he enjoys the items or you can offer him something to make it seem worthwhile.

The amount of joint attention he has is another challenge for these sessions. While the medication has improved this area for him a great deal, his joint attention is still not enough that he sits for an entire session and engages in each activity. I can engage him for up to 45 minutes right now in playing with a number of toys at home, but to get that length of time with him it has to be toys he’s more familiar with or finds easier. Even still, this is a huge improvement over the length of time he was willing to spend before and an exciting development. If a toy is too hard for him to do independently, however, he is only willing to spend brief periods of time working with it.

Rachel, Rosette, and Amara all got to experience directly exactly how briefly he was willing to concentrate on most play tasks prior to starting his new meds. In some cases, we were lucky to get 30 seconds of an attempt for each activity, and this was followed by several minutes where we couldn’t get him to focus on anything.

This is one of the reasons why I tend to buy something identical or similar to a lot of the cooler OT toys being used with our little man. I have done this since he first started occupational therapy when he was a year old. I have found that when I spend extra time working with him at home, this increased familiarity helps support his willingness in attempting new skills during OT.

Amara brings in some pretty cool toys. Some I purchased copies of because Tony definitely seemed to need extra support with them, but a set of foam puzzles I ordered off of e-bay strictly because he seemed drawn to them the first time she brought them in. I felt a quiet flash of satisfied bliss when the first one arrived and he tried to rip open the packaging once he saw what it was. He doesn’t often get that interested or enthusiastic when I bring in new toys.

When I think about what goals I want to tackle with occupational therapy for Tony, I prioritize living skills and play. The living skills are going to matter a great deal when it comes to the types of assistance he will need when we are gone, so that is always priority one. I also recognize that some things he may never have the motor planning to do, and spending a bunch of extra time on them will not benefit him as much.

An example of this is handwriting. His delays in this area are significant and have had extensive amounts of time and effort poured into them while attempting remediation in the past. We’ve had minimal progress towards scribbling, and he still can’t imitate many basic scribbling motions (circular). Many severely autistic individuals don’t successfully develop these skills. So while we do work on fine motor for these tasks, I think it makes better sense to spend the most time on communication strategies that he is able to develop to a higher level. That is why he is so effective in getting his wants and needs across with his TouchChat and PECS.

Currently, I’m pretty excited about some of the changes we are seeing in OT. Because we receive this service in home, Tony has a higher rate of cooperation because he’s not stressed about the environment. What we are seeing over the past few weeks, even with some of his regulation challenges, is that he is willing to sit and engage with Amara for longer periods of time than he was before, although he sometimes still gets grumpy if a toy type is new to him.

We are also working on trying to have him keep his clothes on for more of the session (our little man doesn’t like the way clothes feel so he tends to doff everything but his undies when at home). I am incredibly grateful for how tolerant Amara is of this and every other thing our sweet kiddo tries to do. We think Miss Amara is pretty cool, and she says she’s planning on sticking around…so I’m going to try and hold her to that 😉