A new path ahead..

It happened so fast..

Just like that, the conversation changed. We have gone fourteen years pushing for progress, pushing to get to the “right level”.

But that level has moved now. We have turned left at the fork in the road. We find ourselves looking at different scenery. The path seems longer and is all uphill. We aren’t sure if we can walk, or if we need to run. If a car will come by to speed up our progress. If there will be rivers which will require us to build a boat to get across.

You see, Z is going to high school next year. A few months ago, we met with the new high school team. School transitions are hard. There is a lot of preparation to ensure they are ready for all the scenarios they may come across with Z. It takes a long time to get to know him and he is non-verbal so we are his voice until they get the hang of things.

I sat down with this new high school team and the first thing they said was “Now, are you going to be one of those parents who believe their child is going to receive a diploma?”

I wasn’t prepared for that. Now, before you get all upset and think this question was rude, let me explain a few things. And let me start by saying I am in no way an expert on this as we have barely scratched the surface of this new path.

In high school, students are either working for their diploma or working for their certificate. The diploma is based on typical school subjects and letter grades. Success is determined by a student’s GPA (although that number is rarely spoken about later in life, but I digress). The certificate path is just saying you completed high school. Stay tuned on more info as that is about as far as I’ve gotten here… I told you we were newbies…

So back to that meeting.. I wasn’t insulted by their question. I took a bit to see how I felt about it. And I finally said “No, we won’t be trying for the diploma.” They nodded in agreement and we moved quickly forward. His classes will consist of P.E. and life skills. He may have a job either on campus or even off campus in a couple of years.

Flash forward to a recent discussion with our BCBA (behavior therapy). I was mentioning how we only wanted Z to go part time to school since that seemed to be all he could handle. She said “Well, isn’t the goal to have him attend a Day Program in the future?” I stopped.. Yet another new sign on our path..

Suddenly we went from measuring his success next to his peers, talking about his writing and reading and math abilities. Now we found ourselves simply talking about his ability to LIVE.

Instead of looking forward to a graduation in 4 years, he will be at this school until he is 23 years old. Everyone around him will move on and he will slowly be working on just being able to get through a single day.

From that point, he will have either made enough progress to move into a group home where he may have some roommates and some help but handle his days on his own. Or he will need more support than that and will remain at home and possibly get to go to a “Day Program”, which really just seems like adult daycare.

But I am not mad or sad about any of this. Here’s why… The shutdown was a blessing and a curse for us. It was extremely hard and set us back on milestones. But it opened our eyes to Z’s capabilities. I saw firsthand how hard school is for him. How much work he puts in to learn just one more word. How stressful it is to learn something new while being distracted by all the sounds of the world around him. I saw him hurt himself when pushed too hard and completely break down.

Since we were all stuck at home, we took advantage of the available time to truly work on his life skills. Dressing himself, taking a shower, brushing his teeth, making food. And while all of these things are extremely difficult for him and some of the same behaviors occurred when he was challenged, when he learned a new skill we saw how much more confident he became.

Independence and freedom have been fought over since the beginning of time. It is what we all cherish and work towards.

For Z, I don’t think his math or english skills or going to make a difference for his independence. But if he can choose his own clothes and dress himself, then perhaps that feels like freedom to him.

So I am actually really excited about this new path we are on. I don’t feel bad that we “failed” on the first path. Life is about moving forward and making mistakes and adjusting and making more mistakes and re-adjusting. We come across many forks in the road. It’s just about whether you see them as opportunities or as problems.

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