Can't We All Get Along, redux

It can be hard to get to know people that aren't like you. The reasons are many. Sometimes it's as simple as just not being around each other. Other times it's differences in communication methods, or fear, or nervousness, or pre-conceptions that make it difficult for us to hear what's really being communicated.

Blogger "Mama Be Good" has reached out to families with special needs kids and families with just plain special kids, and asked them to talk about talking to each other. It's wonderful and worthwhile stuff. Take a look.

Will Health Insurance Be Better?

I don't have health insurance.

I'd like to have some. I can afford to go to a doctor when I am sick but I'm really afraid to go unless I already know what my problem is. And I'm afraid to go for a regular check-up. Why? Because if it turns out I have a disease, then I'll never be able to get health insurance. Early treatment is critical for most serious illness, but once you have a diagnosis you're unable to get insurance if you didn't already have it. So, I have simply avoided doing anything that might reveal that I have a health condition. Stupid? Maybe, but not under the insurance system that we have had up until today.

A year ago I tried to get health insurance for myself and my husband. But he was turned down by every company I tried, because he has been diagnosed and treated for depression. He wasn't being treated at the time I was applying for insurance. He wasn't having a depressive episode. And when he has been in treatment, it hasn't been particularly expensive. But because of it, he was turned down for insurance by all the companies I could afford.

He could have gotten insurance through the high risk pool run by the state we live in. But that is basically a joke. Although it is available and they will take people with extremely high risk health conditions, the cost is astronomical, and we couldn't even begin to come up with a budget that would have allowed us to purchase it. Not unless we gave up electricity and all food but rice and beans.

Today the health insurance reform bill was signed. I don't know very much about how it will directly affect us yet, but I do know that my husband won't be turned down for coverage any more. I don't know what it will cost, or how well it will actually cover our needs. But at least we won't be afraid to go to the doctor anymore.

Health Insurance

Health care should be accessible whether or not the individual has health insurance. Plenty of people who have health insurance now can't get the health care that they need because of games being played by the health insurance companies.

Pass a bill. But don't confuse insurance with care. Insurance will NEVER care about health.

Good insights

Came across a great blog today. It is intelligent, sharp and personal on the subject of mental illness. I have already added it to my bloglist, but thought it deserved a special mention. http://blogs.psychcentral.com/depression/2010/03/in-the-shoes-of-the-parent-of-a-child-with-bipolar/

One of the posts on this blog also references guidelines that have been developed for use by journalists in reporting on suicides. I don't think they are widely known. At least, they are not widely followed, so I am mentioning them here as well. If you are a journalist or editor, take a look.

http://www.afsp.org/index.cfm?fuseaction=home.viewPage&page_id=7852EBBC-9FB2-6691-54125A1AD4221E49

The kids that don't grow up and out

When I first had kids, a recurring piece of advice from older parents was to recognize that my life would be all about the kids for the next ten years. After that, the traditional advice goes, you begin to have time to do things other than take care of kids, and when they grow up and move out you'll miss them but you can go back to spending time on your own hobbies.

The traditional advice doesn't apply when you have special needs kids. The older my kids get, my time and mental energy continues to be consumed by them. One child has physical disabilities and the older and bigger he gets, the more time it takes me to bathe, dress and groom him. A "quick" bath was possible when he weighed forty pounds, but as a full grown man, moving him is never "quick." Plus he now needs to shave, etc.

The other two kids with special needs don't need physical help, but they do need near-constant supervision. Which means no running out to the store. No sitting and reading a book for more than ten minutes at a time. No starting the day without creating a plan and schedule for the two of them that will cover nearly all the minutes in the day. Free time for them is a request for chaos. I do try to avoid chaos as much as possible.

My days are full. My nights are spent considering how they will live when they are grown. Considering how they will live when I can no longer physically move my son by myself. how they - and I - will live when they no longer have school to go to everyday. How they will live when my daughter has the legal right to leave home and avoid my constant supervision (remember the chaos thing?).

My situation is exacerbated by the fact that I have more than one special needs child, but every parent with special needs kids has the same trajectory. Devote all your waking time to your kids when they are infants and toddlers, gain a little free time when they start school, go back to devoting all your waking time, and often, many of the night time hours as well if you have insomniac children like I do, to your kids when they grow older.

It's just different. And sometimes, it's lonely.