Spreading Awareness through our Struggle

I started this blog late last week when I was really struggling with Wyatt's school. I was so worried and anxious about it all. I had a rash, couldn't sleep, I felt totally defeated and decided not to publish it.

Today I feel better so I feel I should share it. We all need to remember that some days are hard but believing there is some light at the end of the tunnel sure makes it easier to wake up and continue the fight.

This is what I planned to write last week:

The first few weeks of school are always a struggle. This year is really trying to be the hardest one yet. But I guess that's a protective measure and I just don't remember the other year. It's easier to see that we got through those years instead of remembering how hard they really were.

I honestly can't imagine being a teacher and I also can't imagine being Wyatt in school. It's times like this I just don't know how to help either. Teachers are saying they don't know the antecedent to the behavior issues so I can't get to the bottom of it and Wyatt just says how much he is hating school. I am again to the point where I dread hearing the phone vibrate.

School is so hard for my boy which makes it so hard for me...I just wish I could get it figured out so it would be easier for all of us. That is it for now...

I never posted this because I was so defeated at that minute and I couldn't even wrap my head around what was happening.

Fast forward 2 more meetings:

After meeting with the teachers again and multiple emails I think we have a good plan. We now have a way to track what is going on in the class before he has a meltdown, which will hopefully help us to see a trend of what is frustrating him and we can address it before it happens again. We have a plan for him to take breaks and make amends if he hurt someone's feelings or breaks something. We also have proactive strategies for the teachers to help remove some of the frustrations before he is tapped out. I'm really hopeful this will help him during the school day and I won't dread all phone calls til May.

With every meeting, I not only go in advocating for Wyatt but I try to bring awareness about DMD since it is so rare. Every year I share information with the teachers and administration that explains not only Wyatt but many boys with DMD and how hard school is for them. I can tell who reads and watches the videos because they become one of Wyatt's biggest advocates.

At one of the hardest meetings this year the ROTC Sergeant came in and explained Wyatt to another teacher. I wanted to jump over the table and hug him. I didn't even know he was coming to the meeting. He knows Wyatt, like really knows him as a person! It brought me back to last year when he asked me about something he saw in the video...he gave me the actual minute on the video he had a question about. I knew that day Sergeant was going to be on Team Wyatt.

DMD awareness is life changing for all of our boys because they aren't just seen as the "kid in the wheelchair" they are seen as a whole person. Someone who has struggles but also someone who has something to give to the world. This month is Duchenne Awareness month and I plan to show the world how hard life is with DMD but also how good life can be and how thankful I am for so many people who have stepped into our lives and helped us make memories of a lifetime. Please help spread awareness by sharing our story.