Random Thoughts

I have had a lot of thoughts running around in my head lately, so I thought I would just jot them down.

Contentment:
Are we geared to be content? If we were all satisfied with our stations in life, would we ever strive for more? Wouldn't society just stagnate? Would we have new inventions, new experiences, new buildings? Perhaps not being content is what led to our development as a human race. I have a desire to simply be content, but maybe that is against human nature, and something I should not even long for.

Moms:
I have had occasion to meet a lot of parents of these special kids, and I have discovered that these moms are pretty amazing. They are forceful, persistent, organized, and patient. They would make amazing employees, or business owners for that matter, if they weren't so darn busy taking care of their kids.

Education: (Venting alert)
Why are all of the public schools geared toward one type of learner, the left brained learner? There are 3 public schools all in about the same distance from my house. Why can't one of them have a right brained curriculum. I think we can tell at kindergarten if our kids are left or right brain, and fragile x kids tend to be right brained. Look at all the different kids who end up in trade schools in high school after struggling for years with the existing curriculum. These are really smart kids, but after years of sub-performance, their confidence is shot, and they end up as 'behavior' problems. This could all be averted at an early age by sending them to the right school. There is a huge section of kids with potential that is not being tapped. The curricula are out there, my daughter went to a Reggio based preschool which actually worked well for the way her brain is wired.

I am locked in to attending a public school to achieve the special services my daughter needs, but it kills me to pay my taxes to a public school system that is failing so many of these kids.

Report cards:
What a waste of paper.  All they tell me is that my daughter is below grade level.  I already know this.  It would be helpful if they told me what she can do - what level is she at now?  Same for IEP's.  What does 'making progress' actually mean?  And why is it relevant that she can regurgitate x amount of words in so many minutes?  What does that signify?

Respite and Guilt:
I spend so much of my time thinking about, researching, worrying, sharing stories with others and talking about Fragile X.  Sometimes I need to get away from that world, and hang out with strangers who know nothing about it, or declare a 'no discussion' zone.  The problem is that I feel guilty when I do that,  like I am not doing everything I can for my kid.  I also feel guilty leaving my daughter with babysitters, although she doesn't mind.  I do not have the luxury of having close family members that can watch my child.

As parents we are already strapped down with so much guilt about how our defective genes caused this burden for our kids. It is a hard emotion to overcome. I do know, however that the respite helps me to recharge and I need that to be a better, and more positive, person for my kid to be around.

Could be worse:
Even though my daughter has fragile X, I am fortunate that she is high functioning for this syndrome. There are others who have it so much worse.  I was sitting around some DS parents at a therapy session, and they were talking about the kids who are much worse than their own.   The funny thing is, that almost everyone I meet says this.  There is always someone who has it worse. Who is the person at the bottom of this - who has it the worst?  And does that person think they have it the worst or do they think that is someone else.  I guess it is a matter of degrees and what you hold as important.  One of these boys can barely speak, and my daughter never shuts up, but this boy can read at a much higher level than my kid.
  
My sister has 2 kids who have kidney conditions that required transplants, years of dialysis, many hospital stays and near death occurrences.  While sitting in a waiting room with other parents, she was always the one the other parents looked too, thankful their kids weren't like that. She certainly didn't feel like she had it the worst.  Her kids were smart. They had friends, and when they were well, a fairly high quality of life. They are both in college now, leading independent lives.  It comes back to your own values.  My niece and nephew have a medical condition that can take away their life.  My daughter is the healthiest kid I know.