program pivot

Probably about eight months ahead of Hayden graduating I was already visiting prospective programs for next steps. This is a bit atypical but I've talked about this before-- since he was aging out of the school system right around graduation, I didn't want the timing of his birthday to potentially cause a gap. For students like Hayden who have the option of staying in a school setting until age 21, some may stay for many months beyond their 21st birthday depending when they turn 21. If their birthday is in October for example, then in September when the new school year begins they're only 20. Which means (in NJ, again for example) they can continue to benefit from instruction, therapies, & other related services until June when that school year ends. However if during that time they find an appropriate program with an opening, then they can move on when they're ready without any gap whatsoever.
Hayden's (21st) birthday falling smack in the middle of the calendar year, & like I said coinciding with graduation, is not so fortunate in this context.

He's getting settled in his new routine now-- he joined this program about a month & a half ago. I successfully avoided any substantial gap! My only hesitation with the Day Hab we chose for Hayden was whether there were enough relatable peers for him. Typically people who align with Hayden socially are developmentally further(?) ahead, but if reversed then they're not necessarily socially compatible. He's a unique niche. His current program is looking to expand though, & with that it's likely there will be more participants closer to Hayden's age attending after they graduate from school.

There's another program we know of which in terms of skills & interests is right up Hayden's alley, but not a great setting for him five days a week. He needs some additional supports & structure. Then we learned they were in the process of opening a second location, & this one is in our county. And get this: the participants disassemble electronics for recycling. If your eyes opened wider when you read that, then you obviously know Hayden well! This has of course been one of his hobbies for many years. Not only because it involves using a screwdriver, but with Pop Z having a long history in the scrap metal industry this has been a great activity of interest. 

Fast forward to me asking our support coordinator if she could find out some more information, but I wasn't yet sure if we could create a hybrid schedule for Hayden. His individual budget from the state is what covers his day program & this means the budget would have to be split. For some programs, when a participant fills a spot they prefer they attend full time. Other programs have many participants who attend part time. 
Thankfully the second, newer program allowed Dan & I to tour it with the support coordinator so we could see if it might be a good fit. We loved it. Then we scheduled a trial for Hayden which went very well. But the luckiest part is that this additional program was definitely okay with him being there just one or two days a week. 

Here he is when he visited-- checking out the warehouse of stuff they get to disassemble, then touring the facility, & working on taking something apart!

Next thing I did was reach out to a few people in the administrative offices of his current program. First, I asked how he has been doing. Then I carefully explained we were hoping to revise Hayden's schedule, but I reiterated the many reasons their program continues to appeal to us. I offered perspective for this proposed change because the different setting would also provide an appropriate balance of skills, with additional socialization opportunities. I was nervous sending this communication because everything was sort of riding on whether or not they would agree. 

Well, here is part of the reply we received:

"Hayden has demonstrated significant engagement and enthusiasm. He is increasingly capable of communicating his personal preferences and advocating for his sensory needs, such as requesting access to a sensory room when environments become too loud or declining outdoor activities when temperatures are uncomfortably high. His participation in various community outings—including trips to a bowling alley, stores, local libraries, and a farm—highlights his growing ability to interact socially with peers and staff in diverse settings. Overall, Hayden maintains a positive attitude and shows increasing independence in managing his daily routines and personal belongings. Hayden demonstrated high levels of engagement and positive social behavior across various settings. He appears to respond well to structured routines and benefits significantly from staff modeling and verbal prompts, particularly during community excursions. His ability to express preferences and participate in group activities suggests steady progress toward his socialization and independence goals.

Notable observations include Hayden's successful adaptation to unexpected changes, such as navigating a canceled outing due to inclement weather and accessibility issues, and his ability to maintain engagement through preferred activities like computer use and music therapy. Staff observations noted that Hayden remains calm, cooperative, and responsive to support, frequently utilizing verbal and visual cues to navigate his daily routine effectively.

We completely understand the opportunity you are exploring for Hayden and are supportive of anything that can contribute to his growth, interests, and overall well-being. If you decide to register him for the other program on a part-time basis, please keep us informed of any changes to his schedule so we can plan and adjust his programming accordingly.

We are glad to hear that Hayden seems happy, and we look forward to continuing to support his progress!"

My eyes well up every time I re-read that. If that's not the best response I could have possibly hoped for, I don't know what is. We are so grateful. I thanked them for the feedback, offered a proposed schedule & tentative start date, & reiterated how appreciative we are of all the continued support to help Hayden grow & gain independence.  They expressed if there's anything in particular they can work on with Hayden that would complement his new program. Preaching to the choir as they emphasized working together to provide consistency & continue to help Hayden move forward. 

Before Hayden finished school, I believe it was at his last IEP & re-eval, the Principal offered a comforting perspective for me. Because I had mentioned some of these programs I toured left me feeling nothing short of sad. Hayden was moving on from a private school within a truly impressive facility. And as if reading my mind she sort of waved her hand around us & said, "You're coming from this. But you have to pay attention to the people who would be supporting Hayden. And you have to focus on what they do when they're there, as well as where they go with them." 

To that point, I will not soon forget something subtle which heavily reassured me his current primary program could be a great fit. It was my first visit & as I was speaking with the Day Hab Director in her office, suddenly the program Supervisor politely yet anxiously interrupted us. The Director apologized to me that she had to excuse herself for a moment. I was of course understanding & she stepped outside to take a phone call. I was not trying to listen but it's not as if her office is sound proof. I heard enough to piece together that it seemed one of their participants who had left for a daily community outing (I think), suddenly wanted to return to the program building. The Director asked the individual she was speaking with if they had a buddy, & then she told them that was great they were with that person. Then she reassured the individual that a second van was coming to pick them up & she explained approximately how much time that would take. She was calm & understanding. Then she said, "I am so proud of you for calling me." With that I thought I was going to cry because to me that was exactly the appropriate thing to say. Not trying in that moment to perhaps convince this individual of a different decision, which could potentially trigger a more difficult situation... not at all carrying a condescending or reprimanding tone... nothing to make this person (who was already uncomfortable) feel any kind of way other than simply supported. I was truly trying to hide my emotion when she returned to her office because I was so touched to witness that. 

I don't know if the significance of this whole scenario is coming through, but this has been a huge process & transition not only for Hayden but for us as a family. There would be way too much to explain just what it took to get to where we are. And when I say we are pivoting I mean zero suggestion that something isn't working, but rather a shift to maintain a smooth balance. 

And on that note, I will keep you posted. 
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