Clouds, May 2010

Clouds, May 2010

Tuesday, July 3, 2018

round and round


I offer a lot of commentary in our fragile x world because it's effective for awareness and understanding.

Today I am sharing these pictures taken after Hayden got home from his second day of summer program. I'm all for capturing a smile any day, but for me these smiles were relief and gratitude following a nerve-racking afternoon prior. One of the worst.


Since Hayden transferred to his current school less than a year and a half ago, I have been commuting him back and forth daily. This past spring at his IEP meeting we discussed resuming transportation one way, in the afternoon. Our most recent experience with school transportation, when he was last in-district, was not a positive one. We have had wonderful drivers and transportation aides in the past but without going into detail, the last two were not wonderful. If it wasn't for the fact that transportation was already a part of his routine and at the time he was still attending a local school, there is no way I would have continued putting him in the vehicle with them. In hindsight I really should have pulled the plug sooner but I could not have possibly predicted that he would no longer be a student in that building anyway, and I would be driving him elsewhere very soon.

Hayden needs to know what to expect in order to be comfortable. Consistency and familiarity go a very long way in our world. Anxiety is a trademark symptom of fragile x and even medication does not supersede the power of genetics. It will diminish at times, but unless it's practically sedating there is no medication that is going to undo what fragile x does (at least not yet). Unfortunately, despite my best efforts, we did not have any transportation details ahead of the first day of summer program. So my plan was to pick Hayden up myself.

Monday morning about an hour and a half after I drove Hayden to school, my father called to tell me that a driver from a transportation company called him. She was confirming pickup for Hayden from school in the afternoon. She said, "Is this Mr. Capela?" He said, "No, it's his father-in-law." This was how I actually learned that they had a route in place for Hayden. About an hour later Hayden's teacher called to share similar information-- which was very nice-- but nonetheless a most unusual phone chain. I can only guess my father's cell phone number was pulled up from an old emergency contact on file when Hayden used to be in district. I do not know if I will ever understand how or why it was easier for someone to access than my own.

Anyway, as discussed with his teacher I went to the school to at least meet the driver and aide. We considered possibly giving Hayden a choice at dismissal, since he was not prepared for someone other than myself to pick him up. Luckily his teacher already spoke to him about it and said he honestly seemed excited. So after I exchanged contact information with them, confirmed the route (how many drop-offs and where in line Hayden would be), and also when I should expect him to be home, I left ahead of them. I felt hopeful everything would be fine. Yes it is about twenty miles including highway travel (which is anxiety-provoking in itself), but the driver actually knew landmarks and street names right near our home.

About 15 minutes after his expected arrival time I was starting to get jittery. There had not been any traffic when I left the school so I couldn't understand what could be taking so long. Then thank goodness the mom of one of the other students on the route happened to message me. I was literally just about to reach out to her so that was a big relief. She said she just saw them (in other words her son was home) and they were on their way to our house. I was incredibly grateful for the update. That 15 minute gap felt like an hour but at least I now knew they were only a few miles away.

So twenty minutes later when Hayden still wasn't home my nervousness returned twofold. I tried calling the transportation company, the bus aide, as well as at least two school administration extensions. The transportation is coordinated through our home district so that's why I tried there first. I finally called his school last, tremendously relieved that I at least got a person on the phone, and they immediately said they would investigate and get right back to me.

They called back within ten minutes and thank goodness Hayden had literally just arrived home. Wasn't even in the door yet. However the vehicle Hayden was in, was actually one of two that showed up to our house-- the transportation company owner (or manager) was in a separate vehicle in front of them (I'll call him Mr. B to make the story easier). Mr. B was very apologetic but initially offered little explanation as to what happened, that my son was arriving home nearly 90 minutes after school dismissed. He started to say something about first day kinks... while the transportation aide chimed in to say they left late, or something about having to go back for something another student needed... and with that the driver added that she missed a turn. I was speechless but thinking to myself she missed a turn 35 minutes ago? And I'm replaying our earlier conversation in my mind and it just didn't add up-- she knew where she was headed to drop Hayden off in between the other two students on the route. Not to mention after leaving the neighborhood where the other student lives, there are three turns to get to ours.

I don't know exactly how to explain Hayden's expression as he exited the vehicle but it was sort of wide-eyed and stone-faced. I didn't like it. He went straight to the front door and all I wanted to do was go inside with him. But Mr. B then proceeded to inform me that Hayden was actually going to be on a different route altogether, with a different driver and aide. Starting the next day. I already had so many questions and so much confusion swirling in my mind I could barely react, except to tell him that I wasn't asking for more change and more adjustment and yet another new transition. But it was all so surreal because I still did not understand what happened. Also, the third student to be dropped off was still in the vehicle! His mother must have been worried sick-- I can not even imagine.

When all was said and done, Mr. B ended up arranging for the next pair of driver and transportation aide to come to our house for an introduction.  Unfortunately Hayden was so out of sorts that we couldn't properly introduce them to one another, but once again I exchanged contact information, etc.

I felt so awful for what Hayden must have been feeling... the confusion and the anxiety and everything else... I just wanted to do something to cheer him up. An hour and a half later when he was finally decompressed enough to (a) eat a very late lunch and (b) follow through with leaving the house, we went and got a truck and Dunkin Donuts. Side note about how off he was... apparently Hayden's lunch sack was misplaced at school, so he also hadn't eaten anything substantial since about 7:30 that morning.

He was still a bit off for the remainder of the afternoon and evening; the respite worker noticed he seemed different as well. Even when Dan got home from Monday night golf league Hayden didn't ask him how he played, which was yet another indication that his mind was stuck elsewhere. As far as I'm concerned it's a near miracle that he followed through with going to school in the morning. But when he did, several conversations took place in a very short amount of time before I decided what to do about the afternoon route. Dan spoke to Mr. B and so did the Principal, and then I spoke to each of them to get their input. And ultimately, together Dan and I decided we felt we needed to have Hayden follow through with transportation. Otherwise who knows when he would be ready to try again-- he has an emotional memory which is a blessing and a curse at times.

All of this is why those pictures have emotional significance for me, too. While there was a student absent from the first afternoon run, so it will still be slightly different the next time around, I think (I hope) Hayden was equally proud of himself for following through. And my hope is, that is what he will remember.



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July is Fragile X Awareness Month. The NFXF is sharing daily fx facts on social media. You can also find these posts on the NJ Chapter facebook page.

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