Note, I am a lay person, no one should rely on this information as anything other than my understanding.
Maggie has cerebral palsy, among other things. Cerebral palsy (CP) is an umbrella term for physical problems as a result of damage to the motor area of the brain. The amount and precise type of damage dictate the level of motor impairment. In some people the CP causes high tone, causing some muscles to contract all the time making the limbs extremely stiff and hard to work with. Other kids might have low tone which makes their bodies very floppy. Maggie has a combination of the two, she can go from very tight and stiff to very loose and back the other way several time an hour. Also some parts can be stiff and other parts floppy. You just never know with her. Her specific diagnosis is spastic quadriplegia meaning all four limbs are involved, which they are, but in her case the tone in every limb and the trunk fluctuate wildly. She actually has excellent control of her arms, and good control of her legs, but her trunk and neck are particularly weak and she cannot hold herself up. She also has athetoid movements and dystonia which are involuntary movements and she seems to be flailing around at times. She knows what she wants to do and can generally do it, but it takes a lot more movement than it does for normal people.
One thing that is very difficult for Maggie is to consciously move in a specific way, especially on demand. If she thinks about it too much, it is harder for her. One example of this is asking her to bend her knees when we are changing her. Often her legs will straighten like a board because the message gets "confused" in her brain and it does the opposite. The neurologist said this is typical with Maggie's type of issues. Sometimes its behavioral - because it is fun to mess with mom or the nurses - but generally you can see that she's trying but the opposite is happening.
To get around this, we have to make her do something that causes her to bend without thinking about it. Sometimes I tap on her knees to remind her, sometimes I touch her hips to cue her etc. Sometimes those things work and sometimes they don't. She's too big and stiff to change her without some cooperation so lots of times we just wait for her to figure it out. It can take several minutes just to get her to bend her knees.
For the past couple of months we have been successful in getting her to help by using her muscle memory (my term) instead of making her concentrate. Maggie's nurse Fely taught Maggie something many years ago. She asks Maggie "how much do you love your mother?" The answer, of course, is head to toe. Maggie points to her head and then bends her knees and touch her toes. Now when we need her to bend her knees I just say How much do you love you mother? and she automatically bends her knees to answer. (Note: if she's being funny it will only be from her head to her knees or, in a very bad case, to the chin. But that makes her laugh so hard her knees bend anyway.) She knows why we are asking and she's happy to comply. I just find it fascinating that this works while her own best efforts often fail.
We do a similar thing to get her to let us help her in other ways too. Years ago Lydia, her Occupational therapist, used to instruct Maggie to have a "soft body" so we could put her in her chair. She would automatically relax for a moment so we could safely get her in the chair. That still works occasionally too, but for some reason it often makes her laugh and, unlike her knees which automatically bend when she laughs, her trunk stiffens like a board. We can be trying to lower her into the chair when she starts to laugh and straightens out like a piece of steel. You have to be ready for anything to keep from dropping her. The closer you come to dropping her, the harder she laughs and the more she stiffens. It's a great game.
When I go to the doctor for my sore shoulders and tell him I have to lift my disabled child, he clucks sympathetically, but I'm fairly certain he has no idea of the daredevil tactics we undertake with each lift. I need to figure out some sort of muscle memory that will make her soften her trunk before I drop her on her head.
Maybe I can talk to these people.
Have a great weekend!
School starts Monday!