Replies

I hear ya. Everyone one the outside has there two cents but no one will take time to help.

What ticks me off is when society is against my choice to give my life to caring for my severly disabled son.

Whether physical or mental in severe cases sometimes there are no programs.

We are left to hang on our own and we do.

Often society tries to help and it's like been there tried that.

Another fact others do not know is the divorce rate is highest in families with severly disabled kids/adults.

We have found what works for us is prayer for strength and just sticking together. Smile and when talked to and keep things light.

Going without sleep is harderst. Asthma has been keeping us from getting more than two hrs. sleep on top off the usual care needs.

We have really great Drs. but a lot of times they leave the medical treatment up to me and that sucks when it is a new procedure. Usaully three to four months it becomes old hat.

My son is on a new med that works wonders at calming his uncontrolled movements (which is like being hit by a grown man) the only effect is he gets sleepy and sure enough people complain about how sedated he is. Well after 24 yrs of physically dealing with his uncontrolled movements and him injuring himself I say "hoo Yah" we have something that is working right now.

I get so F'en fed up with others and there two cents esp. when they refuse to sit with my son for five minutes or panick if I go to the restroom say at the store.

If it wasn't for the fact that my adult son thrives on socializing I would be happy living like a recluse.

I just smile nod and let him enjoy being out and about as his health does not allow him to go out everyday.

I'm really glad I decided to post this article. It helps to know there are other families that have the same struggles & frustrations. And all these frustrations and concerns will be brought up with my rep and help us know what families need.

I hear you on the sleep issue....if it's not "stress", it's making sure my daughter isn't sneaking out, or having a panic attack. Many times because of her depression she just can't sleep herself so she gets up and walks. Not a safe thing for a young girl to be doing in the middle of the night, so I've trained her to wake me. And if she doesn't go to sleep, I stay up with her.

It's easy for people on the outside to look in and say "do this or do that"...sometimes a solution seems "simplistic", but when it's your child, your family...it's not.