Bird on the Street

Disability Services: More of the Same

8:42 pm

I mentioned in my previous post that a woman from our parish called to tell me that they would be reviewing Charlie’s case again to see if we qualified for more services than we are currently receiving (now we get none). Frankly, I was shocked. Louisiana is one of a handful of states that has a waiting list for in-home services. Basically, if you are a disabled minor in Louisiana, they put your name on a waiting list and after about eight or nine years, you might actually get some type of help.

Help can come in all shapes and sizes–modification to your home to make it wheelchair accessible, a respite worker, or maybe a care individual to help with bathing. The best part of the deal is that your child gets a Medicaid card–Medicaid is known for paying for equipment when private insurance won’t.

These all sound like nice things, but like I said, eight or nine year wait, so I wasn’t exactly holding my breath.

So a call telling me our case is up for review is a little strange. I’m not getting my hopes up or anything, but it is interesting. I had to answer a few questions so they had an accurate report for the review committee. The woman on the phone ran through a list to describe Charlie:

Long term need for a wheelchair
Brain damage
Epilepsy
Limited vision
Limited use of his arms
No use of his legs
Non-verbal

And man, that’s a tough description. It’s hard to think of my child as a list of deficits.

So, for the sake of my sanity, I made my own list. Charlie is also:

Determined
Resilient
Spoiled
Adorable
Analytical
Sneaky
Curious

He is many things and while I understand the importantance of measuring his limitations, a list of them does not do him justice.

Child in Wheelchair

Charlie is getting a molar, so I can’t get that hand out of his mouth these days.

Filed Underthe system, Uncategorized

How Disabled is Enough?

9:09 pm

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.

Filed Underthe system

Catching Flies: Working With Your Child’s Therapists

11:06 pm

One the things that I think is most important for the well-being of your special needs child, or really any child, is to do everything you can to work with the professionals in your child’s life.

I say, start by killing them with kindness. It’s easy enough to get firm and call lawyers later if necessary, but believe me when I say that you can get a lot by just being nice.

I’ll use Charlie’s Early Intervention services as an example.

When Charlie entered the program at four months of age, he needed a physical therapist, but there were none available so he was assigned an occupational therapist. His OT is a very nice woman, but she has a very full schedule and sometimes she runs late and sometimes she can’t make it. I didn’t complain about schedule shifts and always greeted her nicely and sometimes offered her a diet coke when she was over. Not major stuff, but nice stuff. I always stayed in the room during therapy and tried to be an active participant (except speech–I have to keep back a little or I try to talk for Charlie).

Our OT ended up calling a PT who was on maternity leave and got her to agree to take Charlie when she came back.

When our speech therapist wasn’t working, our OT called up another one that only takes clients on referral and got her to take on Charlie–she’s perfect for him.

Our OT brings us hand-me-down equipment when people donate it to her employer.

I treat the other therapists the same. I try to be accommodating–getting upset doesn’t make them magically on-time nor does it prevent the occasional cancellation.

Our PT offered to add a second day with Charlie when I got fed up with the private place. She’s also offered to attend doctors appointments with us.

When therapists can’t make it, they try to reschedule.

Charlie’s six month reviews have record attendance.

Our PT got pregnant again and had to assign some of her patients to a PT assistant–guess who she kept?

Charlie’s cute, but he’s not that cute. I really think that by trying to be accommodating, participating fully in the rehabilitation process, and treating everyone with respect I’ve gotten some the best treatment around.

As a teacher I know I bent over backwards for parents who called and chatted with me rather than yelled and berated.

With students, I got far better response by praising good deeds than yelling about bad. I could turn behavior around faster with a sweet voice as well. Don’t underestimate your smile–it’s a weapon.

Sometimes you have to get tough, but sugar can be an awfully good too.