Behavior Struggles in Our Son with DMD

I wrote this 3 years ago when I was asked to be on a panel at the Parent Project Muscular Dystrophy Conference in 2019. In order to speak in public I like to write all of my thoughts about the topic and this is what transpired. I have sent this to many families who feel alone in the DMD community because the behaviors are still not a widely talked about subject and can feel very isolating. I hope you can get a peek into our lives with this essay.

If you had to ask me to put into words what living with Wyatt is like I would say it is “hard work”, kind of like putting a square peg in a round hole. Not impossible but requires some adjustment. Ever since he was born he had us at our wits end. He had colic and would cry for hours inconsolably. He would beat his head into the sides of his pack and play, onto concrete floors, and into anything that would hurt him. We were tired, so tired. How could our first child be so difficult from day one. At his 1 year check up we started a work up that eventually steered us to the diagnosis of DMD. At the time he really didn’t have any muscle issues that we knew of. He did have the large calves; but we just thought he was going to be a football player like many of us do prior to diagnosis. Thru the 3 month process of getting to a diagnosis and a treatment plan NO ONE said that we were going to encounter the behaviors we have dealt with in the past 12 years. For many years we heard from everyone, including family and friends that we “spoiled him”, and that we “let him get away with too much because of his diagnosis”. It all fell back on my husband and I and that we were failing at parenting our son with a chronic disease. No one ever offered any suggestions that would actually help. Others would said spank him or punish him from everything...Guess what, been there done that and none of it worked. He would go to his room and throw things and cry and scream and hit walls...then after 30-45 minutes he would come out and hug me and say “I am so sorry, I don’t know why I did it, it was like I couldn’t stop.” The remorse was honest and raw but I felt like and still feel like I am in an abusive relationship but with my first born child. NO ONE ever said it would be like this. We were as ready as we could be for the mobility and medical issues but these psychological issues WE WERE BLINDSIDED! Someone should write a book "What to expect when you are expecting a child with DMD" but there currently isn't one so we had to do struggle on our own.

When he started school we prayed that he would be able to be a “good boy” in the classroom. But shortly after being in Kindergarten the phone calls began. He couldn’t sit still, he threw things when mad or frustrated, he talked out of turn, got mad when corrected and still to this day in 6th grade we hear the same thing. In first grade, his teachers brought me in for a meeting to discuss his behaviors at school. I felt bullied and like a failure. The only answer I had for them was “he is on steroids that is what must be causing it.” I cried and came home and asked myself: How could my son act like this in public? We have told him multiple times he cannot be disrespectful to adults, he can’t yell at school or throw things when angry, when frustrated he needed to take a break....but telling all of these things to a chronically frustrated 5 year old does no good. So we sought out help.

We finally brought him to a psychiatrist and got an evaluation...Wyatt now is diagnosed with adhd, excessive impulsivity, and anxiety (which has gotten worse as he has progressed). Just what we needed more diagnoses for our 1st grader right!?! So we came home and tried all the ways to help our son cope with the demands of “life”. We didn’t try meds for the first year or so after these diagnoses because he was so young and we were reluctant to do ADHD meds. We tried behavior therapy some helped manage it but sweet Jesus we still did not like our child. How can we not LIKE our son? We dreaded when the bus would drop him off. We dreaded phone calls from school. We were miserable. We still did not hear how much DMD would effect the behavior of our son, we still thought it was due to steroids (which he started at 2.5 years old). We finally started him on ADHD meds, we added anxiolytic meds...and the behaviors improved. Life was manageable again, but we weren’t constantly waiting for the next meltdown and all out war with our son. We were actually kicking ourselves for not doing it sooner, but hindsight is 20/20. We stopped beating ourselves up about it, and enjoyed the new calmer life with Wyatt.

It was not until we came to conference in 2014...it wasn’t our first PPMD conference but at our first 2 we were still in shock. James Poysky talked about DMD and how it effects our boys brains and that it is not only the steroids but also the lack of dystrophin in his brain. He suggest a neuropsych eval. Wyatt had an eval from a psychiatrist but not one by a psychologist whose son also has Duchenne. So we did what any parent would do...we made an appointment. Wyatt went thru HOURS of testing and we now had the report that explains what Wyatt is trying to cope with on a daily basis.

I felt bad for him. I felt bad for us, how could we as parents not have known this and how to help him. I can’t even imagine as an adult trying to deal with what he has going on in his head... constantly...plus the physical challenges that he continues to struggle with. So we continued on the meds and made adjustments. We found a good psychiatrist at home who could help the whole family cope with DMD and all the parts that come with it. The struggle with school continued though, even with counseling and medications so I started to talk to his teachers every year prior to school starting. We talk to the principal before starting a new school. They all say...all boys act out, sounds like he is like the others around here. We stress how he isn’t just like all the others in the class. We explain DMD and what it does to his brain and they “try to understand” but they don’t realize it until it happens in their class and they haven’t prepared themselves on how to deal with it, besides sending him out of the classroom. Wyatt is still ambulatory and did not bring his scooter to school until just this year (6th grade). I feel as though this is a blessing and a curse for him. When teachers look at him he looks just like the others, sitting in a desk and trying to do his work until he starts being impulsive and acting out and getting frustrated because he can’t keep up or he doesn’t understand, or there are too many distractions or steps to the directions. The teachers get frustrated and raise their voices which in turn increases his anxiety and increases his reaction to the situation. It is a snowball effect...

When picking Wyatt up from school not long ago he got in my car and broke down. He said, “I wish they understood what it is like to be me.” I told him to write it down so I can use it to help his teachers and others understand. I asked him if I could share and he said yes, so here it is. - Tired all the time - Always being watched - I feel like they are waiting for me to mess up - Loud noises and voices make it hard to concentrate - Multiple steps make it hard to follow so I stop listening - I dread coming to school - Hard to keep up with my friends and it makes me sad - I think about an active shooter threat and what I would do - I wish I wasn’t a bad kid - Hard to sit still

We brought this to the IEP meeting to help get a plan in place to help make this a little better. We need to surround our boys with good people who have their best interest at heart. We were lucky for Wyatt to have great paras/aides with him since he started school. This year I took the step to request for the same aide to be with him all thru his years in middle school. I got letters from his doctors to say that it is to his and their benefit to give him as much consistency as possible. You know what...she will be with him in 7th and 8th grade, if all goes well I will then request for her to follow him to high school. We still struggle with behaviors and now it is “tween/teenager” behaviors. The impulsive texting of his friends, even when they don’t respond and then figuring out how to cope with them blocking him because it was annoying. He still gets so angry with his brother when things don’t go the right way during a game or really just a conversation in the car. I sometimes want to hide in a bathroom just so I don’t hear his yelling. It is so hard to help him in the middle of a meltdown. But still to this day once he can pull himself together he is sooo remorseful and wishes he can do better.

We as parents want to fix it all and make life as easy as it can be for our children and for us to have a happy family life. We understand that we can’t put them in a bubble and always protect them but we need to prepare for the fact that others don’t get it. We need to be their advocate, explain it to everyone we meet even though others STILL to this day, over 10 years post diagnosis, say “he needs a good spanking” or “my kid would never get away with that”. We need to give ourselves a break. Make sure if you have a partner that you are on the same page. This is tough for everyone and you need to ensure you have an open relationship to discuss how to deal with it and to give each other a break from the situation. I want every parent of a Duchenne boy to know you are not alone. The behaviors have been a harder hit to our family than the mobility and I only wish I would have known to get help prior to me thinking my son was an a$$hole.