The yearly stomach punch

I'm not suppose to be writing right now. At least not this. I need to type up a 24 hour log of care for Elias so the State can determine if his needs are high enough to deserve extra support and god do i hate trying to prove my son is disabled enough for Medicaid. I hate the choke-hold this puts on me knowing we can't afford all his therapy and appointments on our own and yet not wanting to jump through all the hoops each year doing the disability dance. Parading my son before people who will never meet him in person. Look at what all these tests and reports say my little boy can't do. See all his diagnosis. Check out his medical file that is three phone books thick. Compare him to an average three year old and look how far behind he is...

Oh, there has got to be a better way and about a zillion things i'd rather being doing right now.

Comments

[Sara]

Ugh. We don't have to do that - strange how different the states are for stuff like this eh? It's a hoop it's a hoop it's a hoop...

keep breathing ;)

[JenniferB]

I'm sorry you have to go through this every year. You would think with the severity of his needs/issues that he would just maybe need to be evaluated every 2-3 years? I mean, of course you will see improvements in capability each year as his therapies help him learn, etc., but he will not stop having the actual disabilities that are clinically diagnosed, so why should you have to go through this? You are a strong woman to be able to handle all you do have to handle every day.

[Kyla]

It is just paperwork, and paperwork could never contain who the true Elias is, Christy. It may be a list of the can'ts, but Elias has so many cans that don't fit on that page. He is amazing, just like you.

[Kelly I.]

Christy,
Hi! I thought I would poke my head in and say hello seeing as its been awhile. :-) I've been lurking again :-) Anyway, your last few posts have been wonderful; watching Elias grow and accomplish so much puts a smile on my face. I can empathize(sp) with Elias and the ladder; although I don't remember this, when we were in preschool my sister and I would watch all the other kids running around and ask our teacher, "Why can't we walk like them?" We were right on track developmentally I guess, but mobility was our biggest issue as well. We graduated preschool using walkers, just like the one Elias has. He reminds me of myself. Oh, and one more thing before this turns into a book: I had to nod my head in agreement this morning as I was reading your post; when I was 16 SSI decided I wasn't disabled enough to meet their criteria. I fought for 5 years on paper, finally appealed to a judge in person, and 3 minutes later he declared me as such. It was weird because, for so long I've been fighting against the idea of "disabled" but I was so relieved that someone finally recognized it. All right, I better shut up now. Take care!!!
Kelly

[Christy]

I agree that 2-3 years would make so much more sense. This year it is amplified b/c the level of support we've had(TEFRA) is up for renewal at the end of March but we also came off the wait-list and passed the first hoops for the Waiver program that would provide additional support-- BUT we were just told, right at the beginning of our spring break, that they weren't sure Elias meets the level of care so they need all kinds of more info before the end of the month to make their decision about which program we fit into...and of course everyone is away and making phone calls and describing in detail every little thing we do for Elias was not our plan for the holiday.

Especially focusing on all that he can't do right when i was feeling so optimistic about all that he can. But we'll do it because I'm getting stronger about doing the dance and not letting it define us. Kelly, thanks for sharing your fight with SSI--as always its great to hear your success stories.

[Gillian]

I agree with the soul grinding nature of the process. Ironically, I am facing the same situation for myself and with my lifetime stance of being able to 'do it all myself' it is hard to find a comfortable mental place to stand with the process. My whole being revolts against documenting the limitations I face now, let alone trying to convince a strange beauracracy that I need their help.

[Julie]

Ahhhh, bureaucracy. It messes with your head, doesn't it?

I hope it's all wrapped up for another year so you can put it out of your head and enjoy the spring. When it comes.

[Teri]

We have to do this every year with our severely autistic and non-verbal son.

Just on the off-chance that he might suddenly get cured or something, I guess.

I, too, hate having to switch gears so abruptly from always hoping and working for things to improve, to documenting every jot and tittle of what he can't do. We have to have these interviews in person, and our caseworker always attends so that she can kick me under the table with I start getting too optimistic.

Best wishes.