[tri-med] Re: To Be A Rabble Rouser or Not?

In a message dated 07/31/2004 2:11:34 AM, karens@xxxxxxxxxxxxxxxx writes:

<< So what do you guys think? Fight for whats right and all those who travel 
the road behind us. Or just bury my head in the sand? I am grateful for those 
who have fought the good fight befoere us and from which we benefit.  And 
grateful isnt strong enough a word. But I am tired of the fighting for every 
inch.
 >>

I am pondering this. Ali did not even start getting respite services until 
she was 12. Dom started getting it when he was 10 and I was able to pay a 
couple 
of dollars an hour exra to have Ali cared for (at home) also. In our case, 
Ali was not deemed eligible for developmental services (Regional Center in CA) 
until she was 12. I had been trying since she was three. I kept on because I 
knew Ali would need assistance in adulthood from RC and that if we didn't get 
in 
the system before 18, it would exponentially more difficult later on. Dom 
always had RC, but they never even told me about half the things they had 
available when he was younger because he really didn't need anything 
extraordinary. 
It was Ali who needed stuff and she did not qualify. Even though I could live 
without the respite camps she goes to throughout the year, and I did for about 
four years, even though I knew she was eligible because we had in home respite 
and filling out the papers seemed like too much work in the couple of years 
after Wade died. (And I have never been depressed...LOL) Besides, I was so busy 
fighting Dom battles, I just couldn't do one more thing. Anyway, Now that she 
has been going regularly for two or three years, I LOVE it. I look so forward 
to that weekend and I hardly ever do anything exciting. Just the thought of 
two nights and a whole day and a half that I don't have to worry about her is 
wonderful. And if Fawna and I are on track about making plans for dinner out on 
the way to camp, it is even more fun. I could have had Ali go to a one week 
sleep away camp next week, but never got the paperwork done and she only has 
three weeks between summer school and regular school starting, so it is ok that 
she doesn't go (I hope). About the constant battle.........for me it has 
always been setting priorities, and maybe sometimes I didn't set them right. I 
have 
been so involved with mental health issues related to Dom and making sure he 
was in a setting to learn and grow, I sometimes did a half-assed job on 
getting what Ali needed because I was already stretched to the max. So I guess 
my 
advice is to look at where you are and where Alex is and figure out if you can 
work up the energy go forth in battle one more time. I think one of the things 
I was thinking as far as respite was, if it didn't seem like a huge priority 
for Ali, I was ok without it. I think I had it backwards. Not only is it really 
important for me, she has gained a huge amount just in social skills, life 
skills and learning how to be around other people. The whole respite issue was 
more important than I thought. But I have been presented with the opportunity 
to go to battle for a couple of things that might indirectly affect my kids, 
and mostly I choose not to fight the good fight. I am tired. I started all of 
this stuff more than 30 years ago and am ready to hand the battle banner over.
Nan
                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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