4.16.2010

looking for a little respite

Each State offers a variety of services for the disabled.



He's so photogenic that it's easy to miss. Trevor is disabled. One such service offered by our state is Respite. The State provides 60 hours of respite to be used over a six month span. The idea is to help support families who are so entrenched in the loving and caring that they hardly have time for a shower. Never mind a date night. Or to take their less needy kids to the movies. It's a lovely idea. And I've known he was eligible for a while now. And have been encouraged to apply a multitude of times. I'm not really sure how to define the emotional hump I had to get over? I suppose it's because Trevy is my child. My responsibility. It just feels mooch-y or complain-y to ask for help. Or admit that help is needed. So I didn't. Until recently. A close friend of mine (wink wink J!) is a qualified Respite provider and pretty much twisted my arm til' I cried "UNCLE"! And then spent hours filling out paperwork, on the phone and what not.



Until I finally...after months pending...opened the mail to find this notification:


I understand that my child has been assessed
and found to require the services
provided in a Hospital, Nursing Facility or Intermediate Care Facility
for the Mentally Retarded.



Followed by a line where I'm supposed to etch my name. My consent. Agreement. Acceptance.



Wow.



I'm not blind to Trevy's abilities. And lack thereof. It's still hard core to see it in blank and white. And sign that I concur. I hope they accept a tear smudged sig.



And I double dog hope our date night makes up for it!

12 comments:

Debbie said...

Yes...that's a toughy...anything in ink...makes it feel cemented.

I guess be grateful you may have that option...I hear in WA it is impossible to get respite these days...imagine...in my situation, Huds doesn't qualify? I have a few choice words I could say on that subject BUT I will bite my tongue!

Go get crazy with your hubby and make it a great date...when it happens!

JSmith5780 said...

So, based on the verbage... will the respite be at home?

You definitely deserve a date night!

baby trevor's mommy said...

Debbie...I can't believe Hud doesn't qualify! It IS disgusting and makes me sick. And you highlighted another one of my soul struggles. I don't want to steal services from the Hudsons in my state. But then...Trevy is broken too. And requires so much energy and care that it leaves very little left over for Jonathan...or the kids. *sigh* And the only family we have in the area is my mom. Grams is amazing...but she can only do so much. Until Trevy...I never realized how important being close to family is. And I have to say...we've made some friends in our community that help with rides for Toby to his practices. But it's the same struggle. I hate feeling "mooch-alicious". Ugh. If we were independantly wealthy I'd just hire someone to help. But Jonathan makes half of what we made as missionaries. Missionaries aren't known for their bling! And you can only squeeze so many places to make more mulah. I suppose I could work...but with two kids needing child care...that doesn't really make much sense either. Plus...I'm pretty passionate about being their primary care-giver. All these crazy layers of being a special needs mommy. Enough to make you crazy...

Jen...it will be at home!

...danielle

Wendi Taylor said...

((( hugs )))

Their generic wording sucks. :-(

Ian Marrey said...

Hmm, also not impressed by the generic wording. We have pretty much phased out the word retarded over here in the UK - it is now a word of abuse.

As for the respite....do it. Although 60 hours in 6 months sucks too. We get 5 hours a week every week and other 7 hours one Sunday a month. The sunday one we found a but difficult as it means leaving Jude in a Children's hospice (the other respite is in the home) but it's nice being able to spend time with the other boys for a day without having to worry about food, drugs, food, drugs....

And Jude gets lots of 1-1 attention too...

Lisa said...

I hate the "R" word...it needs to be phased out. Sorry you had to see it like that in black and white...but great news on the respite. I can understand your reluctance, totally, but you need it and deserve it. We need to get recharged whenever possible. I had mine yesterday in the form of a babysitter for the day. It was heavenly. :) Enjoy date night!

blogzilly said...

I know that as soon as I feel I am about to start climbing out of my depression fog, I get some form or report. They are so...matter of fact...about the flesh of our flesh, and it stings. I totally grok what you went through reading that.

Benefits vary state to to state unfortunately, I am not sure Bennett would get the benefits he receives were we to leave Ohio.

MJStump said...

i read this the other day and didn't quite know what to say. not sure that i do now, but wanted to say something.

for one, love that you have respite care where you are. i don't think kylie needs it, but it would have been super nice when we first got the dx and she was on the ACTH. you guys have a great time and let yourselves enjoy being out :)


i really dislike the "r" word too. still can't believe they use it...i just hate it so much. just go back to your post about things to remember when you have a SN child...something about just looking at the kid and not what the tests say.

he's your beautiful baby boy and lights up the world with that smile!

love, hugs, and prayers,
jody

joanne foltz said...

Who ever updates the "forms" should update the verbage and the staff responsible. I thought we were beyond the "r" word. "Special" needs or "special" kids are used in most circles. They need to revisit their forms in the state of RI and other states who still use such outdated terms. Glad you got approved!! Wish I lived a little closer to help once in a while. Bibi

TheRextras said...

Regarding slowness: 2 Peter 3:9

The state did not change the social meaning of the word to an epithet.

Every euphemism is in danger of becoming an epithet eventually.

Fully cognitive adults with a variety of physical differences have long, arduous, endless, online, on paper, in person and in riots discussions about the correct words to describe their differences.

Those words have all the power you give them. Right now, they give you date night.

More stiff words from Barbara

Adesta said...

I can't believe they worded it that way! So sorry you had to read it put that way, but I'm glad that you were able to get those services for Trevy. You and J deserve it! Go and have fun!!

Colby said...

I just want to cry each time I read what you young parents are going through, as I have been there, done that, as well...I KNOW how it feels...

When Colby was born, everyone still used "The R Word" to describe these kids....I would feel sick everytime I heard it....Simply because it was a "bad word" in my house growing up since it was used as playground name-calling....

The funny thing was, all of Colby's docs used "developmentally delayed"...So I was spared for awhile....Even though I KNEW it, SEEING it was one of those "out of body" feelings....And it was not until he was about 5 or 6 that I saw on it on school records....That dreaded "MR" label....

I HATE labels...They never do our children justice...And I STILL hate that word, although I have become fairly "immune" to it at this point...

Once again, though, this "label" is getting you something...A few hours of much needed relaxation....It is a means to an end....

Remember..."A rose by any other name...."

Cyndi