Time to tell

Part of my job at work is working in our Neuromuscular clinic, there we see many young boys who have been diagnosed with Muscular Dystrophy. This dreadful disease causes a progressive deterioration of their muscles leading them to an early death. We often discuss with the families how and when to tell their child about their diagnosis; some parents handle this awful task bravely and some avoid it at all lengths leaving these smart boys to find out on their own. Sitting in on these discussions I thought about the talk I haven't had with Elizabeth.

It took a couple of weeks to initiate it and each time I thought about doing it I felt sick to my stomach and then I would remind myself that other families have to give such tragic news to their children.

One day while putting on her AFO's she asked why she and her fiance (yep still engaged to her little friend who also has CP) needed to wear them. So impromptly the discussion began; I explained how she was so tiny and fragile when she was born and how hard she fought to stay strong and come home. Then I explained just like the scars she has on her body she has one in her brain that we can't see but that scar causes her muscles to be weak and her balance to be off. I explained this is called brain damage, it won't get worse but will always cause her to have difficulties with her walking. This whole discussion I am trying not to let her see me cry as it kills me that we even have to talk about this.

Elizabeth is satisfied with what we talked about and even during breakfast blamed her brain damage for some spill she caused. She often now will ask about her other friends with CP and if they were baby birds too. For now I just reply that yes they have a scar in their brain too.

Adaptive Dance Class

Quite awhile ago I had contacted the local news regarding the Adaptive Dance Class Elizabeth attends. I want other dance centers, sports groups and gym clubs can see what an amazing opportunity Ms. Melanie gives to Elizabeth and her classmates and to realize how needed these opportunities are for children with special needs.
Elizabeth did a great job in front of the camera. I love watching her skipping, I didn't know she was doing so well. The big end of year show is coming up soon, the girls have all been practicing so hard.

Dystonia

Lately Elizabeth's dsytonic movements seem to be at a high. I really think she must be growing because she is a bit agitated, very restless, awkward and she often is mentioning pain in her legs. Lately I see more dystonia than ataxia; when she holds my hand when we walk there is a constant twitch/pull and her left arm is up when she walks. I see the pull it has on her body and I fear when she gets older what damage her spine will have due to her twisting when she moves.

Her movements are uncontrolled causing lots of spills, dropping her utensils and knocking things off the table. She very often unintentionally hits whoever is close to her with her flying arms. Most often we say oh well and keep going, we do try to get her to be aware of her space, remind her to pay attention to what she is doing and we are calm as it is not completely her fault that these things happen.

But on days where I am in a rush to get out for work or an appointment I am not as calm because I don't have time to deal with a big spill and a complete change in clothes. This week after drowning me in grape juice in my freshly ironed outfit for work she knocked another drink over and soiled her clothing. I cringe now for how I yelled at her and made her sit on the stairs while she sobbed and wretched up her breakfast. I hate that I was so angry at her because of something she cannot control. It also makes me wonder how others respond to these accidents as I have heard some comments from school about her movements. I can see how children can get frustrated with her as always knocks over the game we are playing with her flying arms and legs.

I just don't know how much ownership we need to give Elizabeth with her accidents. She does help to clean up her mess but a fair amount of these accidents would not occur if she were to pay attention. We have tried to minimize her accidents with appropriate seating and non-slip mats. I know I cannot scream at her like I did and I don't want to punish her but she is 6 now and I don't know if she does need some ownership for her accidents.