Over the years, we’ve had questions about Maggie’s diagnosis- Cerebral Palsy- mostly in regards to hereditary. Maggie has two younger siblings and with both pregnancies, we were asked if the risk was present/higher for those children to be born with CP. So I thought I would discuss this question, what CP actually is and what that means for Maggie, especially since so many of you are supporting us on our goal to move beyond the diagnosis.
Let me preface all this by saying I am not a doctor, therapist or expert on this matter but am simply relaying information I’ve learned through discussions with our doctors/therapists, our experiences and research. So, no, Cerebral Palsy is not genetic, hereditary or chromosomal but rather a traumatic event to the brain occurring before, during or after child birth up to age 3. The Cerebrum is the affected area of the brain, which controls movement (including voluntary movement), coordination and speech/communication. Palsy means paralysis, though most people with CP are not completely paralyzed, but instead have difficulty with movement and motor control. There are many different types of CP and the spectrum of function within those is large. Spastic CP is the most common type, where muscle tone is increased and people will appear stiff with jerky movements. I have been told by doctors this is also the “easiest” to treat as there are medicines and surgeries to decrease that muscle tone.
Maggie however, has been diagnosed with Athetoid Cerebral Palsy. Athetoid means worm-like movements so contrary to the “classic CP”, Maggie has low muscle tone. I’ve been told by doctors this is more rare and more difficult to treat because there aren’t procedures to increase muscle tone like those mentioned above to decrease. Words like Dystonia and Ataxia have also been discussed, which is involuntary muscle contractions and involuntary coordination of muscle movement, respectfully.
So what does all this mean for Maggie? Well, the low muscle tone makes her wobbly, similar to a baby in his/her first few months of life before they gain trunk control. Dystonia– involuntary muscle contractions- means sometimes when she’s crawling her head will just drop and when standing (with support) her legs will give out and she’ll collapse. Ataxia, while similarly involuntary, the lack of muscle coordination means she can have a hard time making her arms, hands, legs, etc. do what she wants them to like grabbing something and getting it to her mouth or kicking a ball. You can see how this works in any developing child: a newborn cannot do anything, she’s very wobbly and needs a lot of support- gradually she learns to control her head and it isn’t so wobbly. Once she can control this, she starts rolling, which begins the building blocks of trunk control eventually leading to crawling, standing and walking.
Rolling was the last milestone Maggie met on time, she simply didn’t have the trunk support (because of her low tone and lack of motor control, which is controlled by the cerebrum that was damaged) to perform other tasks. Maggie always had good head control, but without proper trunk support, she didn’t have anything to pull against, another reason her head would drop some. She didn’t sit on time and once she did, it was predominantly a W sit which can lead to more problems like hip dysplasia and is bad for your knees. As you know, she started crawling properly during our first trip to Health in Motion and working on it at home and she does not yet walk. We don’t think about it, but crawling takes a lot of trunk control/support and coordination to move hands and legs at the proper time. Walking takes even more. When you can’t sit properly, there’s a lot you can’t do and while the W sit gave her access to play on the floor it certainly did not help with things like sitting in a high chair or grocery cart. It did not give her the coordination to place cubes in a shape sorter or do puzzles, same with grabbing toys- she bascially swatted at them multiple times until getting a good grasp. And using both hands to complete one task (sitting up and playing with a dollhouse, holding the book with one hand while coloring with the other, banging drums) has been very difficult– she likes to support herself with her right hand and use her left.
While Maggie’s motor control and movement is affected, praise God her cognitive skills are well in place! Maggie is very smart and learns quickly. In regards to speech, she talks very well for a child with CP, but is not understood by everyone. A lot of this has to do with proper breath support (again, trunk control) and the proper motor planning and control of her mouth. Perhaps surprisingly, a lot of motor skills are needed to speak. Because she’s so smart, she’ll find ways to make herself understood. For example, if someone is having a hard time understanding her request for a Rapunzel dolly, let’s say, then she’ll explain it’s a princess with long hair. She is also smart enough, though, to find ways to do things and has formed some bad habits that have been hard to break — like the W sitting.
All in all, we’re so proud of our little Maggie and all her hard work. We’re very blessed to have her in our lives. Thank you so much for reading!! And I hope you have a little more understanding about Cerebral Palsy and how it can affect a person, at least in our experience with Maggie.