Last week I was asked to speak on a webinar about Anxiety, Behaviors and Stress Management presented by Jett Foundation. I teamed up with Dr. Natalie Truba and we had a real discussion about our life with DMD behaviors and Dr. Truba's expert advice on dealing with these challenges. I wanted to share my "outline" on what I wanted to say during the webinar. And take a second to watch our webinar to see how I really improvised a good bit.
Good afternoon, my name is Jessica Rownd. I am a Jett Foundation ambassador and I appreciate the opportunity to talk to yall about the behaviors and stressors that our son Wyatt struggles with. A little bit about me, I have been married for over 17 years. We have 2 sons, Wyatt is 15 years old and has DMD and Wynston who is 12 and does not have dmd. About a year ago I started a blog to document our journey with dmd and that includes an honest documentation of life with a special needs child who also struggles with adhd, impulsivity, anger, and anxiety.
When Wyatt was born he came out screaming and never stopped. He would bang his head on his pack and play and get super angry and have meltdowns that he could not recover from even as a toddler. We walked on eggshells around him for many years. We would not go places because we didn’t know how he would act. Friends and even family didn't understand. They would say I would spank him and make him listen. It was a very lonely time. Nothing worked to help him and we tried everything…time out, spanking, taking things away but nothing worked and most times made it worse. I can honestly say we loved Wyatt but it was very hard to like him most of the time. Life was hard and actually it still is. We finally took him to see a psychiatrist and we tried different strategies, some that Dr. Truba will talk about which helped and still do but he still needed more help. We started him on meds in 1st grade. This was life changing. We were happy again, he was a happier child. It definitely improved his behaviors but he still struggles with it at home and school.
Wyatt is currently a freshman in high school and still has trouble at school. I still dread answering the phone when I see the school’s phone number pop up. Since he was in 2nd grade I started having a meeting with the teachers and administration to prepare them for Wyatt and all his behaviors. Many times they say oh he will be fine it’s normal 3rd 4th 5th grade behavior and they kind of ignore what I say. Then we have to have another meeting a few weeks into school so I can tell them again why he struggles and how to help him. But I do believe that prepping the teachers is the best way to go though. I always tell them that he struggles with loud classrooms (it’s almost like he has amplified hearing), he thrives with routine and that having a visual schedule helps, and I tell them to make sure he knows you are on his side because as soon as he thinks they are out to get him he will shut down and never really give them a chance to repair the relationship. Unfortunately we are dealing with that right now and we are very happy that the semester is over at the end of the week.
So I guess what I really want to convey is that these behaviors are hard and it’s difficult to help someone when they are yelling at you because you didn’t put the toothpaste on the toothbrush right or you didn’t put his pillow the right way but there are strategies to help. They may not totally alleviate everything but it helps and being able to talk to family, friends, and teachers about the differences of the DMD brain and why they have these behaviors helps to bring a little more understanding of the situation. I could go on and on and I will give my email address if you want to reach out to talk.
Please share with those who have friends struggling with these issues and please have a little patience with those living it because some days are harder than others.
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