Last week Jenny wrote about her birthday and the mixed emotions that come with it. This week, I wanted to share a little more detail about that.
5 is an important year for a lot of reasons. In my family there are no more important birthday than the ages ending in zero and five. So, just from the familial traditional sense, 5, being her first of the “important” birthdays is a major milestone.
But with special needs and Rett Syndrome, it is much more than that.
The state funded early intervention therapy programs look at 5 year olds very differently than the under 5 set. The therapies, in the eyes of the state, are less likely to have dramatic impact after the age of 5. They claim that the brain is at its most elastic until the age of 5, and while this may be true, it doesn’t give the whole picture. That theory implies that they won’t be able to help her (as much) after her 5th birthday, that suddenly, her ability to learn new skills lessens. What I do know for sure, though, is that if we don’t do therapies she will lose skills. If we don’t do them, she won’t be able to progress. She will lose strength, focus and motivation. People base their self-worth on abilities and accomplishments – by limiting one, we’re limiting the other and lessening her self-worth in the meanwhile.
I know that if we do nothing, when there is a cure, she will be worse off. I know that when they can fix her biology, if she had never done any therapy, the road to recovery will be extraordinarily hard. When I think about recovery, post cure, I think of someone who has been laid up in bed to the point that their muscles almost atrophy – through therapy they will be able to regain strength, but the longer they don’t use the muscles, the harder that therapy becomes. Yes, therapy makes her life harder now (and ours – driving every which way, every single day), but it will make her life easier in the time to come.
Being five also means she is school aged. While we decided to keep her in pre-school for an extra year to help her develop some life skills – we regularly worry what school will look like for her next year. Do we go for an inclusion program where she will be underserved from a therapeutic viewpoint, but well served from a social standpoint? Do we put her in a special needs program where she will get all of the support she needs, but will not have typical kids to model appropriate behavior for her? Do we put her in a special classroom in a typical school so she gets some services she needs and sees some typical kids sometimes? Or do we home school where we can make sure she gets everything she needs? Lots of questions we have to figure out before she turns 6.
The other thing about turning 5 with Rett Syndrome is that seizure activity increases from ages 5-12, or so we’ve been told. There are certainly exceptions to the rule – some have seizures very early, while a small percent never have them at all. But, if Maggie is going to have seizures, we are now at increased risk. When we get to 12 we will be at increased risk of scoliosis, such severe muscle tightness (dystonia) that surgery may be required to relieve the pain, and a continued fear of sudden cardiac arrest as a result of heart problems or extreme breathing problems.
Maybe 12 won’t bother me so much. At least it doesn’t end in a zero or a five.