Friday, November 24, 2006

Home is Where the Resources Are...

It's a constant topic of conversation in our home... where should we live next? We have many stairs in our condo and carrying 23 pound Mieko with her back brace on is getting more and more difficult. Plus, there's not much room for her to get around in her walker. Every year there are lists of Top 10 cities for families, singles, retirees , etc. I often wonder aboaut the best place to raise a special needs child? Where are the best doctors? hospitals? special education programs? support resources? Safe neighborhoods and decent schools are great, but there's a lot more to consider for some of us.

I've become very attached to St. Paul. There's great comfort knowing St. Paul Children's Hospital and Gillette Specialty Care are just a few minutes away. There's also the Univerisity of Minnesota in Minneapolis and the Mayo Clinic in Rochester, if we need a second opinion.

I'm very impressed with the special education services in St. Paul schools and Mieko's not even old enough to go to pre-school. She's been getting special ed services at our home since she was about 6 months old. The teachers, therapists, and social workers are dedicated and compassionate. Most of the staff I've encountered at the Rondo Early Childhood Special Ed program have been with the district for years and have a great depth of knowledge.

There is very little the school hasn't been able to provide for us. They have a vast lending library of toys and equipment. Mieko's walker, gait trainer, chairs, benches, bath seat and much more all came from the school. If it's not the right size, there's a wonderful Occupational Therapist who adapts it for us. There are also play groups and support groups for the parents. We really couldn't ask for more, except maybe more money in the budget to expand these programs. Even though my hubby would love to move to the burbs (he works out there), I think we'll be staying put. Financial resources are another big consideration, but I'll leave that for another day.

I realize just how good it is when I meet other families who aren't so fortunate. We recently met a mom with a T18 baby from Nebraska. They live 3 hours from ANY hospital. One hospital agreed to take their son as a patient, only if the parents agreed to sign a Do Not Resuscitate Order. The family discovered this was illegal. Their son is now getting the care he needs at Children's Hospital in Minneapolis. But it took reaching out to some other T18 families through the Support Organization for Trisomy (SOFT) to help make it happen. Just another example of why we need each other.

So, how do you think your area rates for special needs kids? Wouldn't it be great if someone actually did this kind of nationwide research and made it easily accessible?


Anonymous said...

Hi, thanks for mentioning us in your blog. Amos is doing better and hopefully getting well enough to get off the vent again. Of course you know that there is not much for resources for Amos here, but we cant move. My husband is a farmer and we have 6 others at home and 14 total in the area (which does not seem to add to the support these days) But It is helpful to be able to vent (I am frustrated right now)but It aslo scares me when I cant get the emergent care my son needs.
Of course alot of people remind me I have other kids to think about, and that I can always have, but Amos is here and I cant give up on him. But you can be in the same place twice, What do you do?
I am trying to decide whether to get a trach for Amos. Were you ever in that postition with mieko's condition? any suggestions or oppinions are welcome , I just want to make a informed decision for him.

Maya, Mieko's Mom said...

I'm glad to hear Amos is doing better. There was a brief time when we thought Mieko might need a trach, but luckily that didn't happen. Though a trach does take care and maintenance, I've heard parents learn to handle it, just like everything else. I would encourage you to talk to other parents, docs, and resource specialists at Children's. There's a home transition specialist to help patients get connected with the support resources they need once they leave the hospital. If they don't contact you before you get ready to leave, you can ask for them. It sounds like the greater issue is emergent care. I really don't know what to say that would be helpful. I would keep asking questions. Children's serves a 5 state area and I'm sure they've dealt with similar situations before. Maybe there is some way to get nursing visits or some other kind of home help. I can't imagine how hard it is for you to have to be so far away from home and the rest of your family.