We have all heard it before, though it gets easier to understand as we get older it is still hard to hear the word "No". Over the past few months Patrick and I have been working with the school system to have Wyatt's middle school para-educator follow him to high school. We recently found out we lost our battle. Let me tell you a little bit about what Wyatt's para-educator does for Wyatt because I know many of you probably have no idea why it is so important to us. Wyatt's para helps him with all of his physical needs and helps Wyatt with his behavior struggles. Over the years when Wyatt while in middle school Tess always made sure she had his eye on him watching for triggers or any little note that he is having a stressful time or getting overwhelmed. She had learned all of his idiosyncrasies and was able to manage proactively instead of reactively.
Knowing Duchenne and how the lack of brain dystrophin affects his behavior and his need for consistency we felt that Tess needed to move with him. Well, like I said, we found out that they were unable to make this transition possible for Wyatt. The assistant principal called a meeting with us, his special ed instructor, the parish special education director, the principal and the school nurse team. When I walked into the room they probably noticed that my eyes were huge. I was not expecting all of these people to be at the table that morning and at that minute (without anyone saying anything) I knew Tess would not be going with Wyatt. I could feel my stomach sink but I kept and open mind and just hoped that everyone in that room had Wyatt's best interest in mind...and by the end I felt that they all do.
The team listened as we explained Wyatt and all of his quirks. They asked questions from what the para does for Wyatt & what Wrigley does for Wyatt to CPR certifications, swallowing issues, schedule, classroom and bathroom concerns. The nurse said the expectation is that Wyatt will do everything for Wrigley, as they knew that Tess helped out a lot with Wrigley in Middle School, and the nurse wanted to make sure we knew that it may not be like that in HS. Patrick and I nodded but when I looked over I saw Wyatt's new special ed teacher and she winked at me which helped me feel a lot better about the discussion. Yes Wrigley is Wyatt's service dog but Wrigley weighs more than double what Wyatt does and therefore Wyatt can't walk him without assistance, he needs to be hooked to his chair when they are alone and that doesn't allow Wrigley to potty very easily. I am sure it will all work out but it is just another worry starting a new school and not having a familiar person by Wyatt and Wrigley's side.
Like I said Patrick and I know that you can't always get what you want but that doesn't make it easy. Patrick explained to the team that we hear their reasons as to why Tess can't follow Wyatt but he also explained to them that as soon as Wyatt meets someone he knows if they will get along. (Apparently this is a gift that many Duchenne boys have which I learned in a webinar with his psychologist). We explained to the team that through the years we have had to tell a principal to never let a para go near Wyatt, we also had to ask for him never to be with a certain teacher because of extreme personality clashes which ended up with Wyatt absolutely hating school. Everyone seemed to be on board. They asked what personality traits would be a good match for Wyatt so they could make sure he has the best opportunity to transition into High School. God I just pray this is going to work out.
I guess I write all of this because even though we have fought for months and usually we are able to get the best accommodations for Wyatt this time we didn't get what we want. I can only hope that things work out better than expected. So many times in our life things didn't go the way we thought or planned and it worked out for us. Please set a little intention that this is what happens for us again because this is a huge transition for Wyatt....new school, new electric chair, going back to school after 18 months of being home, and not having his trusted aide. I have to say by the end of the meeting it really felt like we were a true team all working to give Wyatt the best opportunity for a great start in this new chapter of his life.
Below is the link for the video about the invisible stressors of DMD and the importance of consistency.
Thank you for sharing Jess. This is one of our biggest stresses too. I’d love to talk to you about it. I miss you so much! Just caught up on your last few blogs. I just love how your write and connect with us. Love you friend!