Tuesday, September 1, 2009

Groping Forward

My son is going to learn to use a blind cane and read Braille.

If you had told me this a couple of years ago, I would have instantly dissolved into a salty puddle. Now I merely shrug. I think I'm able to take into stride because I know he could get by without either if he had to. But I've slowly realized that we need to give him these tools so that he has a better chance of success and independence in the future.

For instance, he can walk around (and climb and run) just fine because he knows when to be cautious. If he comes up to a change or step, he tests it out or gets down on all fours to crawl over it if he's unsure of the height. Or if he's in a hurry, he'll grab my hand and let me help him across - all of which is great when you're 2 years old. Not so great when you're 22.

He isn't near reading yet, but he will learn to read like other kids in grade school. He'll have the CCTV to make the letters larger, which is just fine for a few grades when reading is minimal. But by the time he is reading large amounts of text in high school and college, he runs the risk of eye fatigue and not being able to get through it. Thus, Braille can be a second option to turn to.

I'm thinking about these things because Fall is upon us and therefore the transition from his IFSP (early intervention plan) to his IEP (school plan) is here. This is a major process that involves lots of time, meetings, and haggling over goals, accommodations, etc. I think his team of teachers and therapists are really good, so I'm not stressed about fighting with them like some of the stories I've heard from other parents. But we have to start thinking about his short and long-term goals for school as he prepares to enter preschool in November, all of which is a little overwhelming.

Thanks to our new vision therapist, who is a little more on the ball, we were finally connected with the Michigan Parents of the Visually Impaired support group. I talked with the head of the group, Amy, the other day on the phone. By the time I hung up, I was doing my best Howard Dean "YEE-HAW!" She was a wealth of resources and information! The best part was that she mentioned her son, who is now in grade school, also had to go through sensory processing therapy and intense speech therapy.

She FINALLY confirmed for me what I've been trying to prove for the past 2 years - that there is a connection between poor vision and speech issues!!! She mentioned that many of the parents in the group have had their children in speech therapy at one point or another, which is a huge relief for me to hear. She also convinced me that it was time to get some resources outside of the school to supplement his speech therapy. After countless phone calls to my health insurance carrier, I still don't have a clear answer as to which speech therapists are covered, but I got a referral to the University of Michigan pediatric speech pathology center just in case. They *think* that center is covered, so I have to call back and attempt to talk to someone who knows what the hell they're talking about before we actually go to our first appointment later in the month. Come on health care reform - I want a public option so I can tell these Blue Cross yokels to kiss my reimbursement forms!

Speaking of health insurance, I am in the process of getting SSI for the boys as well. I've heard the monthly amount is negligent, but it would allow the boys to be covered under medicaid. This means we could finally set up an appointment with Dr. Hertle, a leading albinism expert who may be able to perform a surgery to help with the nystagmus. In the meantime, dealing with the Social Security office has already been a nightmare - and that's just trying to get a live person on the phone so I can make an appointment!

On the bright side, we finally set a date for our trip to the National Institute of Health in Washington, D.C. This November, they are paying for us to fly out and stay on campus for three days while they study the boys. This is the first time that anyone's done such a major study on albinism, so we're excited to get a chance to contribute. Hopefully someday the parents of a newborn with albinism will benefit from the information they gather so they don't have to deal with all the unknowns we deal with.

The boys have to endure three days of vision tests, skin tests, blood tests, and endless paperwork, but at least we can explore D.C. during the evenings and before we fly out. If anyone has ideas for keeping kids happy in a waiting room for hours - please share! We are used to 4-hour vision appointments and always come prepared with toys and snacks, but we're going to need the big guns this time!


  1. Cassi, I can't believe how much you've grown in the last 2 1/2 years. You've gone from weeping over every bit of new disappointing information to putting on your mommy armor and going out every day to do battle for those adorable babies. You are my hero! I don't know how we raised such a courageous and loving daughter but it must have something to do with those tough pioneer genes you inherited.

  2. Cassi, let me know if there's anything you need when you and the boys are down my way at NIH.
    cindy b