Guest post by Ivy Scherbarth. Ivy is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, Living Duchenne.

 

Oh Brother

When I was growing up, I was very jealous of my brother, who has cerebral palsy. His CP meant that he got to go to therapy a lot and play with a couple of really fun ladies, a physical therapist and an occupational therapist. I desperately wanted to go to therapy too. (I did, later, but it was a different kind.) Sometimes he got special opportunities that I wasn't eligible for. My brother got a lot of attention because of his disability and it was sometimes hard for my sister and me to accept that.

 

When I was thinking about starting a family, the issue of sibling rivalry loomed large in my mind. I wanted each of my children to feel that he or she was getting everything he or she needed as an individual, without regard to what his or her siblings either needed or were getting. I wanted my children to feel that they are on the same team, not competing one against the other within the family, but supporting each other against the inevitable tides of confusion and stress outside the family.

 

Naturally, when my son was diagnosed with Duchenne, I was very worried about how his diagnosis would affect my daughter. Would they be forced by cruel fate to replay the dynamic that my brother and I struggled with? In this particular case, I need not have worried. Just because one member of a family has special needs does not mean that other family members do not also have special needs. There is room for more than one disability in my family, just as there is room for more than one child. Now I worry more about how long it has taken me to fully realize that fact and to get both of my kids the professional help and care that they need.

 

Long before we had ever heard of Duchenne muscular dystrophy, our daughter was showing signs of special needs. Her eyes were crossed. She was severely speech delayed. She had some gross motor delays. But it wasn't until her brother was diagnosed that we really started to take these signs seriously. I just could not admit that my perfect, beautiful, sweet babies both needed special medical care. After all, they were born safely at home. They nursed long and well. They smiled at me. They cooed. They smelled good and they were so cute. They didn't get sick or have ear infections or scream and cry a lot. It took us a full year to realize that our son hadn't met any of his gross motor developmental milestones. How could we possibly see our daughter's much more subtle (to us) signs?

 

As soon as we got our son's diagnosis, we went into a frenzy of treatment for everyone. Our son went to muscle clinic, physical therapy, and swimming therapy. Our daughter went to speech therapy and had two eye surgeries. Our son got a walker and a wheelchair. Our daughter got a month of heart monitoring and eye glasses. I loved it when both the kids got to do therapeutic horseback riding together with the same therapist in an easy-to-schedule combined family class. At school our daughter got special reading instruction. Now that our son is ready to enroll in Kindergarten, we're working simultaneously on an IEP for him and a 504 plan for his sister.

 

(But wait, you say! You won't decrease sibling rivalry if your whole life is a gear/adaptations/disability contest. True enough. This essay is for you, dear reader, and I'm trusting you not to call my kids and rub their noses in it. By the time they have the reading skills to comprehend what I've written here, I trust they will also have the good sense to understand what it has all meant to them. Besides, just because we haven't talked with them about it in this way, doesn't mean they haven't put the puzzle together. They're living this reality, after all.)

 

The bottom line is that we are doing our best for each of our kids, as individuals, and for both of them, as a family. Sometimes it feels like it isn't good enough. Duchenne is one of those fabulous diagnoses that just keeps on giving. We survive the early developmental delays, the horror and shock of the initial diagnosis, only to slide into the patterns of degeneration way before we have time to "feel ready." Just when we think we've got the idea with what to expect physically, we get slapped with the cognitive package and its implications for school. And for our family, just when one kid seems to be on top of things, the other's needs become more urgent. It's a roller coaster, for sure. But come on, if you have to be on a roller coaster that's much too big and scary for you, wouldn't you rather be on it with your brother?



 

 
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Comment by Megan Knight on May 8, 2013 at 10:12pm

I thank you for this.  I go through this thought process constantly.  We got the diagnosis, start to figure it out and then kindergarten started and I am trying to deal with all the cognitive issues and helping learn to cope with this and to learn, and I feel like I am letting my daughter down and not give her enough attention because preschool and learning to her is a breeze.  Then last year after I left my ex husband I found out for three months he had been molesting my daughter.  Now it is trying to balance his needs with hers and give them all I can.  It's hard but we're learning. Thanks so much for this again

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