Frustration, Revelation, and Everything In Between

So today we had Charlie’s second annual Really Big Powwow and man was that a kick in the teeth. Or a punch in the gut. I’ll let you decide.

I cleaned for almost two hours before everybody got here. I generally live in a state of filth, but things seemed especially bad, and there were two extra people coming–Charlie’s case manager and the evaluator. I wouldn’t want them thinking I live in complete squalor, so I scrubbed counter tops and vacuumed and folded laundry in a desperate attempt to make my house look a little more presentable. I think I did OK.
So every single one of Charlie’s therapists came to the meeting–that’s four therapists, the evaluator, and the case manager. I don’t actually have enough room for all those people, but we made it work.
The report was passed out and Charlie is severely behind in everything except social/emotional. Wow, that was a blow. I mean, I know we’re behind, but seeing it there in black and white: severely behind over and over again–depressing. Later that day I was telling Charlie’s Feldenkrais practitioner about it and she asked, “well, how’s he doing compared with a year ago or six months ago?” and I really think that that’s the problem with the whole thing. They don’t know. They can’t tell you if he’s improving or not. You can’t assess the efficacy of your techniques either. He was behind before and he’s behind again–at least part of your brain wonders if the hours of therapy and travel and research are worth it or are you just spinning your wheels. If I could change one thing about Early Intervention, it would be that–I’d like some measure of whether or not he’s improved in addition to information on how he compares to other children.
But I’m a big girl. I have this blog where I recount progress. I have videos and pictures. I know that Charlie is improving–these evals are just hard.
And then, after skimming over that fact that my kid is a disaster area, they come to the big discussion: equipment.
Quickly, two major points come up–transportation and sitting. Transportation is taken care of pretty quickly. We’re buying a high end regular stroller to get us through the next few years. Charlie is tiny, and can ride in any stroller pretty well, so I see no need to waste insurance company good-will on an adaptive stroller at this point. We’re holding out for the big kahuna–some type of power wheelchair.
But then suddenly, and without warning, they throw a dirty bomb in my lap. Charlie’s OT and instructor really want him to have a better seating situation. They want complete torso support and a large tray so he can work on things like coloring, puzzles, and eating with a spoon. They want to spend less time holding him up and more time working on new things. I think this is a great idea, but the idea of equipment is fraught with issues. First, no one knows exactly what we want. They know they want something, but overall I’d say that knowledge of equipment is pretty limited in my area. Second, equipment is expensive, so you don’t want to buy something that’s not a good fit.

This one offers a tray attachment, but it looks huge.

So I google “Special Tomato” because someone somewhere on the Internet has one and I remember the name. Well, that brings up an entire website of adaptive, positional seating–it’s like Pandora’s box of ugly medical crap. And it is ugly. I swear that if I ever get to the point where I’m making money instead of spending it, I’m going to to do two things: one, start a scholarship fund for parents who want to pursue alternative treatments for their children and two, design some medical fabric that doesn’t make me want to barf. I mean, even the stuff that’s less ugly is still pretty unattractive. The Special Tomato is actually getting cuter so that’s a plus. It comes with a LOT of options, though, and since I don’t have a crystal ball, I don’t know what a good option would be for us. I know I need a tray–do I want a tall seat or a low one? Do I want a wheeled base? Do I want it to be more portable or more integrated into our home life? THERE ARE TOO MANY OPTIONS! And, of course, there’s no way to test it out or even better, to test out multiple options to see what would be best for you. I’m going to makes some calls tomorrow, but my PT didn’t know of a place that handled kid’s equipment and my Internet search yielded nothing as well. Ahhhh, the south. I’m going to have to make a thousand dollar decision based on some teeny-tiny Internet pictures and manufacturer-provided descriptions.

This one doesn’t have a tray but can be put on a regular seat at a table.

So there you go: I’ve got research to do on seating options. The eval has spurred me on and I’m going to try to integrate reading books into our daily routine a little more. I’ve got our usual seven appointments a week. I’ve got ABR hours to get in. I’m still doing research on alternatives to Phenobarb. And, I don’t know if you’ve heard this, but there are only so many hours in the day.

Sigh.

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Comments

  1. The first special tomato chair you have there is HUGE! If I remember right the seat part can be used as a car seat too. I think that's how they get insurance to pay for it.

    The second seat is the soft touch sitter and we have both size 1 and size 2. It's great to use at the dinning room table, in the stroller for better positioning, and at restaurants (you know if we ever went to one). We had to pay for both because insurance doesn't pay for position seats. No need to by the wedge thing though. Our's is in the garage not being used.

    Good luck in your search! You might call a local DME place and ask them to have several sent in (demos) from their reps so that you can try several out in their showroom. I've decided that it's like buying a car!

  2. We have the Special Tomato. THe old version – blue – it is hideous…and I just found this new brown version YESTERDAY online and told my husband I wish we had it instead! But that's not gonna happen. Anyway, yes, Special Tomato does have a carseat, but you don't just take that seat out and put it in the car. It's another system.

    There are seats that have bases that lift up for table use, and then go down for floor use. (and anywhere in between for whatever :)

    It is fun to see them play with things on a tray.

    I'm sorry you don't have a facility to see equipment before purchase! It helps to see and feel and try things first. I can help you find things online.

    My friend with two CP kids has Rifton chairs. She loves them.

    Are you on FB? I can hook you up with other special needs parents and you can paruse our photo albums!! :)

    Email me: 3berks@fairpoint.net

  3. I hate Evals too, for a lot of reasons. But not the least of which is just what you said…I can never get s straight answer on where he was and where he is, cause no one fucking knows for sure. It's all guessing.

    If you ever DO get to the point of wanting to design some product that's SN specific and cool at the same time I'd be happy to help you, product design and manufacturing is what I do, so tuck that away for future ref should your dreams ever materialize.

  4. Well, I can definitely attest to Charlie's progress… that kid's progress is enviably amazing!!

    Onto the equipment. We are in the same boat. I've been talking to Barbara about it… BIG help. Maybe you and I and the boys can plan a little trip to SA and Barbara can take us chair shopping in person! HA!

    Speaking of trips. We may be skipping Plano in Nov. Since we are getting equip of some type, I think our ABR funds will be going to that for this quarter. And aren't only 3 sessions required the second year??

  5. Hi, I don't really know how I made it to your page…but I made it here through some bunny trail.

    My son, Max, has the first Special Tomato multi-Seating device. And yes it is big, but it is a great chair. It isn't rigid and sterile looking like so many chairs out there. And we actually did use it as a car-seat and wheelchair, as well as a in home seat.

    It is one of the only special needs car-seats that is allowed on airplanes, and once we got off the airplane, it goes directly into the wheelchair for transportation.

    Here's a picture of Max in his…he's about to outgrow it, and we're hoping to get the next size up. (This is the small, and we've had it almost 3 years.)

    Max's chair

    And as for the floor sitter special tomato (the smaller one) you can put it up in a chair at the dinner table with you, as you can the larger one. It's a good upgrade from high-chairs once Charlie would outgrow his.

    My friend, Jenny, has one for her little CiCi, and she has put on this tray to give CiCi somewhere to play. You can see a picture of her in it here…she's a little bitty thing!

    CiCi's chair

    I hope this isn't overwhelming for a first comment. I just know how those visits can go too. You walk away feeling like none of them care about how you're feeling about it all…it's just all about your child's needs. And yes that sounds selfish, but you're in this too. And it does effect your emotions when these next steps are necessary.

    Best of luck in your search!

  6. Nadine Hightower says:

    Are there USED equipment dealers? Kids outgrown these things there's bound to be a place to find a good used one.

    You'll find it.

    Do not be defeated by their negativity. Charlie is making progress. All kids are different. you know that.

  7. hello?! did they not see the pics of charlie in a crawling position? he is definitely making progress!

    our therapists give drake an age equivalent at each visit. yes, the age is very behind, but he does progress a few months each time and so you see the small progress on paper. do they not do this for you?

  8. Good luck with the special seating hunt. And really? One day you totally have to make something cute to replace all this ugliness. Seriously.

    PS: If you use a mild-tasting fish fillet, by the time it soaks up all that flavor, you can't even really taste that it's fish.

  9. No, Kelly, I get no age equivalents, so there is absolutely no sign of progress. We go from "very behind" to "very behind" each and every time. And our PT is very encouraged by his progress, but that's not what these offical meeting are about–they are about his "behindness"–pretty sure that's not a word, but you get my drift.

    Jenn, good to know about the fish–I really am just going to have to bit the bullet and fool around with fish until I see what I like and don't like.

  10. I kind of hate those meetings and formal evals every time. It's not like you don't KNOW that they're behind, but I feel like I have a different perspective, looking at where she came from and where she is now, but still, when I read it in black and white that she is at a 1 month level, it kind of stings. I do like how our therapists focus on the goals though, and they always make ones they can hit or close to hit! ON the equipment, we don't have much – just the special tomato that Deana linked to for us. It works for now, but I'm in serious need of an adaptive stroller with some major support, and I'm waiting, waiting, waiting for it. For now, I actually have a "regular" jogging stroller that Deana sold me (for cheap) and Max outgrew. I love it. It's a City Series Elite (or something) and it lies flat, and has a large canopy, folds up great and easy and is super easy to manuever. It also holds up to 100 pounds or something ridiculous. YOu might be able to find something similar on craigslist. Good luck! Love your posts!

  11. Hey Katy. We have the first Special Tomato. Yes, it is HUGE! It can be used as a car seat, but we have never used it as such. Actually, because of it's bulk and weight we never actually take it anywhere except out to the patio for times we eat outside. We have the wheeled base and the tray which we also never use. They are taking up space in the garage.

    That said, we LOVE the chair! It is strapped to one of our dining room chairs and we use it every day for every meal. It is soft, comfortable, and pretty easy to clean. Plus it provides really adjustable, supportive seating for Eden.

    I saw the second chair at a friend's house, and it is also really nice. More portable for sure, but not as adjustable. Kind of give and take. We have a tumbleforms feeder seat that we carry with us when we go out without the power chair. Once Eden outgrows that (which may be never?) we would prob look at replacing that with the smaller special tomato.

    HTH! Good luck!
    Billie

  12. It sounds like people have a lot of stuff in garages. I like Nadine's idea of looking for something second hand. There has to be things out there that other kids have outgrown.

    I personally think Charlie has made lots of progress. Maybe he is behind but he isn't stationary and I assume that the comparison is also a moving target as he is compared to other kids at his age at the time of the evaluation.

  13. Josephine says:

    I've not been reading your blog very long, so I don't know Charlie very well yet, but I am surprised that your therapists can't answer the question of how he's doing in comparison to a year ago. Isn't that the point of these yearly evaluations?
    Before Avery started preschool she had to do another evaluation, and I was a little worried she wouldn't qualified because she had to have a delay of at least 25% in at least 2 areas of development, and I thought she was only really delayed in her gross motor skills, but it turned out that they thought she had pretty significant delays in every area except language and social/emotional. It was a big and not so pleasant surprise.
    And Amen to there only being so many hours in a day! There are nights (last night being one of them) that I can't get to sleep for HOURS because I'm thinking and worrying about all the things that I DON'T do for my little girl!!

  14. We're just going through all this right now too – although we did find an alternative to phenobarb a few years back. Ask your neuro about Keppra. It's been good for my 4 year old daughter, and the only time side effects were an issue were when we tried the generic.

    We just saw the Leckey Mygo seating system today and it looks like it'll work great – it kind of looks like an office chair if you can look past all the extra straps and handles ;0)