How Disabled is Enough?

When Charlie was two months old, we began the process of enrolling him in Early Intervention. At that time we checked a box saying that we would be interested in what they call a OCDD waiver. Many states have a program like this and it exists in order to keep children who might otherwise be institutionalized at home.

We have an evaluation with the state at the beginning of May.
I wonder what help they would be able to provide us, if any. I really have no idea if this is even a good idea. Hubs is already resisting–he hates taking “charity” which I think is ridiculous. We pay taxes, so it’s not charity–we use the library, we’ll use public schools, why not this?
It’s just weird. I mean, I just can’t tell if Charlie even needs something like this. I feel like Charlie is such an in-between kid–he’s not mild, he’s not severe. He’s distinctly moderate. Sometimes I don’t know where exactly we fit in. I mean, even if I look at the GMFCS for cerebral palsy and he’s straddling the line between II and III. We’re misfits.
I feel this way in other situations too.
This weekend we were at an event for the families of specials needs children and adults. While we were there, I saw two other families with children that had cerebral palsy that were about Charlie’s age. One family I already knew and we chatted for awhile and then we went off to test the adaptive trikes.
The girl I know and the other mother ended up talking up a storm–discussing their strollers, head control pillows, HBOT. I sidled over there, but the other mom didn’t seem interested in talking to me. I think we didn’t look disabled enough or something.

So it can be tough here in the middle.

I know it’s tough on both sides too.

I guess I just feel whiny tonight.
Pictures of Charlie in the diaper box car–suprisingly fun.
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  1. It's a hard topic, friend!

    My son is level 5 on the CP scale….so I do prefer to associate with others who's kids are as "bad off" as mine.

    However, thankfully, I am learning to be more compassionate to others who's kids are more able bodied than mine.

    As for services….GET THEM WHILE YOU CAN!!!

    Eli qualifies for our state's DDD (Dept. of Dev. Disabilities) program according to "need" – but our state is broke….so there is no funding available for the middle class kids!

    I can't tell you how happy I am to have gottent to know you in the blog world. I'm reading a book right now that is blowing my mind, and I keep thinking of your attitude and fortitude and eagerness to push on….and I'm so thankful and inspired by you!

    So, thanks!!!

    And go buy this book right now:
    Stuck in Neutral by Terry Trueman

    It's fiction, but it's awesome. It's about a 14 year old with CP who cannot move anything voluntarily and his family thinks he's a vegetable. But inside his head he is brilliant and knows everything they are saying. Some of the insight of this character make you look at your kid in a whole new light! It's awesome.

    It's a tiny pocketbook. 114 small pages.


  2. we're in the middle, too. :)

  3. We just qualified for our states version it's called Medi-Cal waiver, the child has to basically be substantially disabled in 3 out of 5 areas so Annabelle qualifies under these 3 speech and receptive language, mobility, and self care. I asked 9 months ago for it and kept getting turned down by our service coordinator then eventually I took it up with her supervisor then she turn us down then I eventually had to fair hear that decision. Because there is so little money in the budgets they seem to turn down a lot of people hoping that not many will fair hear the decision so it comes down to the noisiest wheel gets the most grease.
    So it is quite beneficial our program we get things like respite, co-pays paid, medical equipment paid for, after 5 if still in diapers they will pay for them too. So it is worth it to find out some of the benefits before you turn it down. Just remember you are saving your state loads of money by keeping Charlie at home and not in an institution so it is just their way of helping you out with it all.Do not think of it as charity it is tough having a special needs kiddo and you guys deserve a little help.

  4. Mamá Terapeuta says:

    Ok, guilsty as charged! My daughter CP is severe as well, and I have actually had SOME problems relating with parents os kids less affected. I know hundreds of families and I'm glad I do! I've only had 'issues' with one family, whos kid was 6yo, could play violin, drums, flute, spoke 3 different languages, talks, jump, etc… But

    her mother could only see his disability. All she can talk about whas how hard it was, how disabled he was,how terribe their lifes was now because he was so so so disable… I think she was genuinly sad and stil upset. And that made me really mad. How can she not thank all the things his kid was able to do?????

  5. TheRextras says:

    Our Teen has read and complimented "Stuck in Neutral" – been on my reading list a while. Guess I will have to pick it up, Amy.

    Heather at LittleWonders just got turned-down for diapers in CA – a story like Sandi's.

    At the same time I can't rationalize the cost effectiveness of home vs. not-home. More complex than money.

    I'm thinking the decision on waiver services is more complex than a GMFCS scale, too. Whether or not you accept services is personal. (It is good to honor a husband's opinion – and not because it is cost effective.)

    Socially, "it can be tough on both sides" – with a diagnosis or not? Yes.

  6. I am there with ya, Katy! Seen that phenomenon myself, in Family Connections, here in SC. When Faith turned six she had to qualify for DDSN services. She did qualify but only level 2, not level one. Level two means NO communication, at all, unless I initiate it myself. And b/c our state is also broke, we are on the waiver waiting list for family service funds and an automatic entrance into level one but they have completely cut out all of this for people who don't already have it. CRAP!

  7. I so do not consider it charity–like you said, you're paying for it, in a way. It seems odd to think that one child needs it "more" than another based on the severity of their disability.
    Are you able to give it a try and then opt out if you decide you don't want to do it?

  8. Nadine Hightower says:

    It's like that black thing…light skinned vs dark skinned. Isn't it?

    It's weird. I can only think it's jealousy. I know that sounds petty but I think if we are all honest with ourselves that that's what it is.

    Embrace each other. We all have a long row to hoe, we just all do it a wee bit different.

  9. Being in the middle is not easy!! We do not fit with the disabled and we do not fit with the normal either. I know we have it good but is it too much to want better? We are in the process of getting the waiver program also. I am not fond of te idea but we need the help and we too pay taxes so I guess I'll take the help where I can get it. It will supposedly help us with tube feeding stuff, meds, and hospital related expenses. We'll see how it goes…

  10. Get everything cheap while you can, I think. My favorite PT, who I have been pimping on my blog lately because I think he is amazing and has enabled Hannah to crawl, which is apparently unlikely with hemiplegia, was a private provider I paid big bucks for right when we got started. He takes four or so early intervention kids at a time, so I waited a couple months and when another child aged out at three, he moved me over to his caseload, so I get top dollar work for $40 a month, along with OT and speech if we turn out to need it. Once we age out of EI I expect my costs will only go up,

    The disability level thing? Oh glory this freaks me out. I hope to get in the not too disabled camp. We "pass" for now. but later? Arrgghh.

  11. Big brother, Little sister. says:

    HI Katy,

    Our system is no doubt different than in the States and we have been accessing EI since Cooper was born- 5 years ago- bit hit and miss with therapists as such.
    I have the same issue here with being in the middle ( Cooper is GMFC level 3) not that it takes into account great sense of humour and communication issues! lol
    I feel a little bit of CP snobbery sometimes with Cooper being milder than some but also feel out of place with kids who are mild. I also tend to stick with the same type of CP and the same degree.
    Parenting my second it strange as we fit everywhere as it's just so "normal and boring!" :)
    Lovely to find your blog and your beautiful family.