Extraordinary Kid Resources

Last updated May 24, 2009

I've learned a TON since having Elijah. I felt compelled to share my tips and tidbits with the rest of you. Most of this is only helpful for those living in Oklahoma as benefits vary state to state. Hope it's useful.

The minute you realize your kid might be extraordinary (so this is for those of you in slight denial as I was, put yourself on auto-pilot and make these calls):

• Sign up for early intervention services (called SoonerStart in Oklahoma, but all states have something)
• Call the Department of Human Services and speak with a case manager about getting your extraordinary kid qualified for Medicaid. There are multiple programs: Eli is on TEFRA. Your extraordinary kid's Medicaid can serve as primary or secondary insurance, so just apply.
• If you live in the Tulsa area, get your kid on the waiting list at the Little Light House. You can put off the decision of using their remarkable services, but if you aren't on the list, you'll never get to decide.
• If you live in Oklahoma, get your kid on the DDSD waiting list (through DHS). The wait is LONG, but I hear the payoff is worth it if you eventually get on. It is fine to hope your kid doesn't actually qualify when his turn comes up.

Down the road a bit:

• Once you have your kid on Medicaid ask about gas reimbursement for medical miles driven. The rate paid is low, so keep track of all medical miles for your taxes and tell your accountant which miles were paid on and at what rate. Leave the number crunching to an expert. The financial impact of this can be significant at tax time.
• Once you are on Medicaid, ask about per-diem payments for out of town, overnight medical visits. This includes if you live in a different county than your "local" hospital. Again, this isn't much, but every cent can help keep your family on track financially.
• Attend Extraordinary Connections support group co-founded by yours truly. Our group is for parents of kids who have rare genetic or metabolic issues. We totally get where you are.
• Once you are on Medicaid, sign up for $1 a month home telephone. Nearly all of the providers have the $1 month program, but Cox offers call waiting and caller ID for another $1 a month.
• If you get on Medicaid and your kid is younger than 5 years old, go to your local health department office and apply for WIC vouchers. I know, I know, you don't need the help, but think of what you can get for your extraordinary kid with the money you would have spent on what WIC provides. It's generally between $40 and $60 based on the age of your kid. I have to admit, WIC doesn't make it easy to use their services, but stick to it.
• In Oklahoma, call Oasis about getting respite vouchers. You can use these to pay your child care providers so that you can get some "ME" time.
• Sign up to get a mentor through Oklahoma Family Network. The OFN staff work hard to match mentors and mentees according to diagnosis or geographic location based on the mentee's desires.
• If your child's extraordinary issues include anything orthopaedic, contact your local Shrine for access to the Shriner's Hospital network -- the sooner, the better.
• Start a system to keep your extraordinary kid's paperwork. Paperwork is an understatement for what comes along with your kid. The more doctors, the more paperwork. I have a two-drawer filing cabinet for Eli's paper.

Dealing with the medical professionals...tips from Melissa:

• The only doctor qualified to talk to you about a diagnosis for your child is called a geneticist. The rest of them will make guesses, which can easily send you into a frenzy, but they are just guesses, although the doctor doesn't call it that when they spout it out.
• Even in a hospital, most medical professionals are not accustomed to extraordinary kids. Plus each extraordinary kid is radically different. Know that eventually, you will be the expert on your kid. At first, it won't feel like that, but eventually you will realize that you really do know best in many instances. Persist in being heard and speaking for your kid. I still believe that kindness gets me further than anger, but assertiveness is essential.
• Rely on yourself to coordinate all of your kid's medical intervention. Plan on being responsible for keeping each doctor in the loop on what another doctor is doing or recommending.
• Write everything down.
• Medical Residents are an important part of the medical future, but remember that they are learning and in my experience, some of them speak with authority like they know what they are talking about when they really should not. I've learned that I'll listen to the resident and then I double check everything he/she said with the doctor. Good practice.