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Roller Coaster

You ever have a moment, where you are so proud you get a little teary eyed?

Team photo on the 50 yard line at Gillette Stadium after the tournament.

That was me last weekend.

And a few days later you are so frustrated by the same kid that you are again teary eyed?

That is me now.

Like every parent, raising a child is like a roller coaster. There are successes, failures, skinned knees, and rewards. "I hate you's" and "Thank you's". The highs and lows are expected.

But the roller coaster with a special needs child is more extreme. Some kids will be ok with little help, or medication. Others with disabilities will need assistance forever. The families of these kids are the primary helpers, and may be for their entire lives.

We are lucky that J's autism is considered "high functioning" and he is expected to go on and lead a productive life after school, with minimal assistance. But getting too that point has been a struggle.

One of J's big struggles has been social skills, but also following through on commitments (like homework!). This struggle is due to his lack of "executive functioning" skills.

As a way to work on his socialization, we have encouraged J to take part in different activities. Last year he started using the climbing wall at the Y. He enjoyed it, but by the summer, it was harder to get there, and they closed for a while due to staffing shortages.

High School has offered different opportunities. With the encouragement of his case manager, J decided to try Unified Sports.

Special Olympics Unified Sports® brings together athletes with and without intellectual disabilities to train and compete on the same team.
First practice. J is running toward a TD!

The first sport...flag football.

After watching the high school football team win their Homecoming game last month, J decided to give flag football a try.

He loved it.

One of the players on the HS Freshman football team is not only in one of J's classes, but is playing with the Unified Sports team as well. J talks about his all the time.

They had several practices, and one game against a neighboring high school team.

Fortunately, the abnormally warm weather in October and early November made for nice practices and a win for the team.

This past weekend, J had the opportunity to participate in a tournament at Gillette Stadium, where the New England Patriots play.

The team came in 2nd place in their division.

Before the game, he told everyone he knew to come to Foxborough to watch the team play.

He claimed they would crush everyone.

Family photo down on the field.

He was so excited that it didn't matter that the weather had turned colder and it rained. He played his heart out, and cheered on his teammates.

I was so proud of him and how he handled himself with the weather, and the loss in their first game. It may have helped that his older cousin came to watch him play.

We were at the peak of the roller coaster.

A week later, we were at the bottom.

Remember what I said earlier about commitments and homework?

The struggle is real, so much so, we are inching toward meltdowns...for both of us!

For most people it wouldn't be a big deal. There is a punishment, and the kid figures out that there are consequences to their inaction.

Those kinds of punishments just don't work with J.

Part of the frustration for me with his autism is that he doesn't process cause and effect the way we do. He says he understands, but he doesn't always "get it".

This is the executive functioning process that J just doesn't have. And he has started lying about getting his work done.

Of the things I hate about school today is how reliant everything is on technology. Assignments are listed on Google Classroom. Each class has a section where all assignments are listed. When J finishes the assignment, he can attach the document and click "Turn it in".

J's Google Classroom Dashboard

One of the benefits of everything being on Google Classroom, is that I can request a daily email telling me what has been assigned. And what is missing.

J oftentimes does his work on paper, so he has to physically turn it in the next day to the teacher. He does this in English class most of the time.

But there are times he does a little bit, gets stuck on a question (or just stuck), and marks it done, without it being complete. This happens in Math a lot.

And then there are the times where he tells me he got it done, has a marked it complete in the Google Classroom, and he hasn't even started it yet.

How I handle this is where some of the difficulty lies.

With B, I can just say, no video games until the work is done. He just does it.

This approach doesn't work like that with J, because J doesn't comprehend the fact that lying or not doing the work has consequences. So, how do you punish?

We've tried this approach, and it ends with yelling, tears, and nothing changing.

There is also the wonder, will this set off J?

There has been times where the slightest attempt to change his behavior was greeted with anger, and a full blown melt down--complete with breaking things, and tearing apart his room.

Fixing his room after a meltdown. He's back to being a happy kid.

J is Jekyll and Hyde.

This week, fortunately has been a better week, although we are still struggling with the homework thing.

J's teacher emailed me to let us know that he had an English assignment due at the end of the week, and to get J to start working on it ahead of time. We did, and thought we had a good start.

However, when it came time to turn it in on Friday morning, the wheels came off. In this case, he did not turn in the completed paperwork that we had worked on all week. And, he did not click the "turn in" button. On top of that, he was supposed to use the work he had done in class to work on a rough draft paragraph about a character in the book the class had read.

He did not do that at all, and when I pushed, I got 3 different answers why he didn't work on it in class, or in study hall.

I lost it.

Bottom of the roller coaster.

So we tried a different tactic (after I yelled that I no longer care if he failed his classes and had to repeat 9th grade).

Helping the Scouts raking leaves.

After we both calmed down we came up with a plan. It still involves consequences for his actions, but he at least seemed to understand.

If J can do his homework, and turn it in on time, and not lie, after 2 weeks, he will get extra screen time.

If he doesn't, or he lies about the homework, 15 minutes will get taken away.

He agreed to this plan, and we will see if it works.

There will always be ups and downs, and some will be more extreme than others. But I know that we just have to keep the course, and continue to help both J and B.

Today was a good day. He worked on his homework, and even helped out B and his scout troop with the leaf raking fund-raiser. And, he expressed interest in continuing with Unified Sports. Next up, basketball.

We are heading up hill on the roller coaster, And it has been one heck of a ride, because fortunately those uphills have overshadowed the downs.

And today...when J came home from school, he immediately showed what he needed to do for homework.

Progress...let's hope so.

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