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What I’ve Learned
We’ve known since our son was 11 months old that he had some sort of muscular dystrophy.
At first, we were told it was Duchenne. For that one month that we suspected DMD, I remember holding our baby boy in my arms in that brown rocking chair while my husband processed the weight of the diagnosis in the other room.
When we had gathered enough courage to share the news with our family, we received the call from our doctor’s office. We literally just told my sister the news while we were at her house when my phone rang. The doctor said that they made a mistake and the diagnosis was Becker’s. My son might need help walking in his later years. It might affect his heart.
Ok, no problem. We could handle that.
We cautiously breathed. We started to heal. We started re-engaging wy life. And we lived blissfully under the facade of Becker’s for 3 whole years.
Duchenne Muscular Dystrophy
Duchenne Muscular Dystrophy is a progressive muscle disease that weakens the muscles. Children often stop walking in their early teens and start using wheelchairs for mobility. Duchenne Muscular Dystrophy also affects the heart and breathing. It is terminal. Current life expectancy is somewhere in the 20s. About 1 in 3,500 boys are affected and it is usually inherited from their mothers.
These were the facts that left the hospital with us when the diagnosis was changed to Duchenne Muscular Dystrophy for our 4-year-old son.
The appointment was supposed to be routine.
We had traveled to a different state to see the doctor who was leading research on our son’s specific mutation. I remember meeting a family in the waiting room and their sweet 2-year-old boy still wasn’t walking yet. I remember him trying to pull up on my chair and the sadness I felt for this family. And my relief for my own.
Our mutation specialist wasn’t there, so we had a “stand-in” doctor. I remember it was right after our son did his Gower’s Maneuver that the doctor told us it was Duchenne, not Becker’s. In denial, I immediately argued our medical history facts with him. I remember saying aloud that the conversation would stay seared in my memory forever. I hazily remember the social worker coming in to offer support and I somehow left with a thousand business cards from the appointment.
I remember the disconnect I felt as we decided to do something “fun” after the appointment for our 4 year old son. We went shopping at their local thrift store and bought a small portable keyboard that I just can’t seem to get rid of. We visited a local museum and the air was cool and crisp with the most beautiful sky. The world kept going irreverently even though we had just received devastating news.
Inside the museum, we explored the Egypt display, the bug section, and I rode a unicycle on a high wire to bring a smile to my family’s face. And when I lingered behind my husband and son, I looked at the other faces in the museum, wondering how many other families there also just experienced a life tragedy. How many others were putting on a happy face like me, but were really in agony underneath?
And that’s the end of that movie reel. I remember nothing else about that trip. Typical trauma response.
Our Family’s Mental Health
Our son is 11 years old now and we’re still easing into what it means to raise a child with Duchenne Muscular Dystrophy. We have a lot more to learn, but what we do know is that Duchenne Muscular Dystrophy is far more than just a muscle disease.
Far, far more.
We know now that the lack of dystrophin in the brain affects mental health, learning and behavior. For example, my son has extreme anxiety and OCD tendencies. He also has ADHD and is hyperactive. He has sensory processing disorder that revealed itself when he was about 2. He didn’t “grow out of it” like they said he would.
My son is deathly afraid of stickers. Especially stickers on fruit. He refuses to eat around them and lets out blood curdling screams when he sees one in the kitchen. The kind of scream that makes you jump a little, sends your heart racing and instinctively start looking for blood. When he’s around other kid’s lunches with stickers on the fruit, I can see the fear rise.
A few months after he was diagnosed, we visited a museum during a trial visit. We went through a section that explained fire safety in a kid friendly interactive way. He fixated on that for months, maybe even a year, and asked me every night if our house was going to catch fire while we were sleeping. He was so afraid to go to sleep.
Getting out of the house and putting on socks and shoes is a time-consuming struggle. The socks must be dirty socks. If they socks are clean, it’s even more of an ordeal. The socks have to feel a very certain way, otherwise there’s more of the soul shattering screaming that loiter around those stickers in the kitchen.
And the wrinkly fingers after daily hydrotherapy? We’ll save that for another time…
ADHD is common with DMD. It affects his learning and he doesn’t fit neatly into an “acceptable” learning box. We have abandoned our efforts to convince educators of our son’s physical, emotional and academic needs and we now homeschool. Our whole family is much happier.
At one point, our family was significantly struggling with challenging relationship dynamics. Since ADHD is hereditary, both myself and my husband had ourselves screened for ADHD.
Turns out that I do not have ADHD, but I do have an anxiety disorder and OCD myself. That helps to explain a bit of the challenging family dynamics we’ve experienced over the years. 2 years later, with my anxiety meds maxed out, I can laugh again, stay calm to parent well, and even let some bygones be bygones within my marriage.
I have since learned that simply experiencing the daily trauma of the typical Duchenne family lifestyle can actually change the brain chemistry in members of the household. Simply the casual daily life experiences of a family living with Duchenne invites mental health challenges for the entire family.
Relationships
Peer relationships for my son are hard. Maintaining family friendships is hard, too.
For years, I’ve debated with our son’s neuropsychologist whether he has autism, or just presents like autism in some situations. Other kids can tell that something is just a little bit off. Gratefully many kids have been able to get past that, welcoming my son into their friendship circles along with all his quirks.
Adults, however, seem less forgiving and expect very specific social behaviors. But my son just cannot conform to most of society’s arbitrary expectations. And I’ve become ok with that. We’re constructing our own life philosophy and we’re finding others with similar goals.
Living with Duchenne affects the individual’s self-esteem and self-worth. It affects peer relationships. It affects siblings, marriages, family dynamics and family friendships.
Interestingly enough, though, these things are not because of the lack of dystrophin.
These things are largely due to the lack of inclusion in our society’s structure.
Family, Friends and Duchenne
Our son is in his late ambulatory stage and we’ll be getting our “just short distances” wheelchair soon. I’m not afraid of a scooter or a wheelchair. I’m not afraid of a PICC line or a BiPap. I’m not even afraid of a tracheostomy or a feeding tube.
What really gives me pause, though, is what I have learned over the past 7 years.
I have learned that our American society is currently unequipped to adequately support our individuals with Duchenne and their families. Patterns of mental health challenges, lack of respite care, inflexible employers, poor health insurance coverage
I have learned there are many barriers that prohibit full civil rights for the disabled, even simple access to buildings. There are barriers to achieving financial independence, repercussions for accepting job promotions, shame and fear in exploring and expressing their sexuality, and even significant obstacles to getting married.
I have learned that all these barriers often lead to low self-worth, social isolation, social exclusions, sexual frustration, a lack of intimate relationships, discouragement and repercussions for quality job performance, and dependency on others not just for their physical life, but emotional and cognitive lives as well.
Those are discriminations and patterns that I wish upon no one, especially my own son. And so, Family, Friends and Duchenne was created.
We focuses on understanding effects of Duchenne beyond the physical ailments. We create more social and inclusion opportunities for every individual and family with Duchenne, no matter where they are on the journey. We educate and advocate for our adults with Duchenne so they don’t have to miss out on independence of several kinds.
Whether 2 years old, or 42 years old, every individual with Duchenne – and their family – needs a strong sense of self-esteem, secure relationships and reliable social inclusion. This includes our dear families who have lost their loved ones with Duchenne.
Inclusion and support are essential. For our entire community.
Duchenne Muscular Dystrophy is more than just a muscle disease.
Far, far more.
Personal Duchenne Stories:
What I’ve Learned
We have shared so many Duchenne stories over the past year or so. Our stories are all very different, but with so many similarities. Frankly, it’s a little mind boggling.
I recently decided it was time to share my own family’s Duchenne story – to tell the story of the diagnosis, the story of our past few years, and the reasons why Family, Friends and Duchenne came to be.
So, if you have a couple minutes on your hands, I invite you to click on the link below and I’d be happy to share with you some of what I’ve learned.
https://familyfriendsandduchenne.org/more-than-a-muscle-disease/
For more Duchenne Stories:
- Family, Friends and Duchenne
http://www.FamilyFriendsAndDuchenne.org