Monday, September 19, 2011

Scheduling your child's therapy life sure can suck


Ever wish there were more days in a week, just so you can cram in more therapy sessions for your child?

Yeah.

Ever wish you had a secretary solely devoted to scheduling your child's therapy and doc appointments?

Hell yeah.

This has been on my mind since Friday, when I learned that a new occupational therapist I found wasn't going to be able to see Max, after all.

Background: A few months ago, I decided Max needed a new OT in his life. He's made progress in terms of using both hands more regularly (he tends to only want to use his left hand) and grasping things, like crayons. But I'd like to see more happening, and I thought a new OT would bring new tricks and observations to the table. I needed one who could come to our home, and they're not that easy to find—especially good ones.

I emailed friends and contacts, asked a few centers nearby, asked around some more. We found a good OT for the summer, but we weren't geographically desirable and she couldn't make it once September hit. Others didn't have time in their already-crammed schedules.

A mom friend had gushed about an OT who had worked with her son. Miraculously, she said could see Max on Fridays. I rearranged his other sessions—speech, music therapy, another OT. Zing, zing, zing—dozens of emails flying around as I tried to see if the other therapists could change to a different day. They all agreed to.

I was at work for the first session with the new OT, but we spoke on the phone afterward and she reeled off thoughts about stuff that could help Max. Including the fact that he needed more physical therapy in his life to help his arms, which don't have a vast repertoire of movement.

Friday, before her scheduled time, she called to say she could no longer see Max. She works in our school district and her supervisor said there was some conflict of interest in her seeing Max privately (even though Max goes to a school outside our district).

It wasn't her fault, not in the least, but I was very bummed and told her so. I am sure I sounded quite pathetic. Like I had just been jilted by a boyfriend or something.

She came over one more time, and gave more great suggestions—getting Max a slant board, for instance, to put on the table so that when he draws his wrist flexes upward (it tends to go down). She also showed me how to get him to hold a crayon the right way, between his thumb and forefinger, as opposed to the primitive whole hand grasp he tends to do.

I wanted her. I wanted her bad. But it was not meant to be.

I asked her to put out feelers with other prospective OTs and now, I am desperately on the prowl again. If I don't find someone who can visit Max on Fridays, I will have to rearrange his week all over again.

Good times.

And may I just say, ARRRRGH.

Dating was so much easier than this.


17 comments:

  1. That sucks. People don't realize how finely tuned our lives are. Arranging my work, Elizabeth's school, her weekly actvities, her medical appointments and her therapy is a full time commitment and one change messes up all my hard week.
    Maybe adding everything to a google calendar and forwarding it to all Elizabeth's people would make them see that staying at home twiddling our thumbs does not happen (in a waiting room is another story).
    Finding a good OT has never been easy and the good one seems to disappear as quickly as we find them. Good luck.

    ReplyDelete
  2. We have had horrendous luck with OTs and my daughter is only 2 1/2. We are on OT #5 and have had some problems already. My daughter gets PT, OT and speech/feeding. The work of liaising with EI and all the therapies is ridiculous. Nobody believes it, but without my constant supervision and intervention we would be stuck with lousy therapists and sessions scheduled solely during her nap time. It's incredibly frustration. Also, you would think the therapists never deal with a working mom. Is it so hard to communicate by email? Messages left at home won't be returned - or even checked - during the work day.

    ReplyDelete
  3. Just popping in to give you hugs and lend my ear. I really hope you find someone and those advances can continue to grow!

    ReplyDelete
  4. This reminds me of all the problems we had with Joey's speech therapist. We had to switch around a couple of times and I was never 100% in love with either. Then we moved and put our developmental therapist in jeopardy. We had moved out of her radius and I had to meet her somewhere else......but we got to keep her. Now he's in preschool (public) and gets all services there. As of now, I'm thrilled with all his therapists. I pray the same happens when he hits elementary.

    ReplyDelete
  5. so frustrating! I have one kiddo in dev preschool, he's getting PT outside of the therapy he gets at school and is on the waitlist for OT and Speech... I also have another who is in First Steps (our state early intervention program) and getting PT and OT and soon to be DT and Speech... I have days when I am completely overwhelmed by it all. I hate looking at my calendar!

    ReplyDelete
  6. Sigh. It SO sucks. But it isn't just the juggling of the schedule that's bad - it's when the non-therapy people give you the stink-eye because you aren't following the rules when you ask for your kid to be allowed to check out of school after 2:00 (because if you wait until the bell rings you'll be late and it's ridiculous to check her out 30 minutes early for no reason), or you switch your kid at the last minute from Wednesday evening to Sunday morning CCD class at church because they changed the time and now you can't make it back from therapy. Then there's the constantly changing early intervention schedule that you receive each month that never seems to have the same dates and times on it as the one the PT/OT/ST are given.

    And of course, my personal favorite - the insurance cap of 30 visits per calendar year. With two special needs kids, our out-of-pocket costs that have to be scheduled into the budget sucks, as well.

    But I'm not bitter...

    ReplyDelete
  7. When we had 10 hours of thearapy a week, it was awful.

    I threatened to hire a "virtual assistant" this year, though, between therapists, doctors, re-certification for our state's medical program for disabled kids, and having a second child in the NICU. I may hire someone yet - an hour or two a week for an appointment secretary might save my sanity....

    ReplyDelete
  8. Wait...so you're telling me the scheduling doesn't get any easier once your child is receiving services through school instead of early intervention? Ahhh Ellen! You are ruining my fantasy! I keep telling myself just a few more months and we'll have some free time.

    Went to dinner with a Twitter friend last week, whom happened to be in town. As we chatted, she asked what I do with the boys all day. "Do you go to parks and museums and places like that?" she asked. I kind of laughed and said "Um no, we just do therapy." M has autism therapy 5 mornings a week and that doesn't count his behaviorist, and then J has therapy 3x a week, and that doesn't count his actual doctor appointments. On average we have 2 appointments a day, but many days we have 3 or even 4.

    I dread moving in a few months because I'm going to need to find new therapists for the boys, especially an OT.

    ReplyDelete
  9. Yes that totally sucks! I hope something even better turns up.

    ReplyDelete
  10. We are constantly battling the therapist schedule! We just had a major overhaul due to therapists' kids being home for the summer then switching back to the fall schedule. Now we have to switch again because Rowan is having the sdr and needs to up his PT. We are happy with all of his therapists, though. I'd hate to have to find new ones.

    Good luck.


    Julie Lewin

    ReplyDelete
  11. My daughter broke her unaffected elbow and is now getting PT for that as well as for her CP. Ug. It just seems so cruel to have to double up on PT.

    ReplyDelete
  12. Oh yes to ALL of what you said. I swear I spend sooo much time "arranging" things. Right now, we are in the process of transitioning from EI to the school district because Sam is turning three, and I hate that her birthday means all this crazy reorganizing, etc. that STRESSES ME OUT. I want to just relax and celebrate my girl.

    Just curious - (maybe a future blog post idea?!) how much private therapy do you do for Max per week, and how much does he get in school? As we begin this transition, I KNOW that the therapy the school offers won't be "enough," (and that they approach things from an educational model and not necessarily the same way private therapists will) but I also feel like I've GOT to give Sam some more time to just "be," and not be in therapy all the time, and towing that line - finding that balance - is overwhelming in and of itself.

    ReplyDelete
  13. i have gotten tutored by a teacher at the same school and the distrct did not do anything and my old teacher used to tutor me as did my aid sorry your distct is different

    ReplyDelete
  14. Hope you find a replacement that's just as good. It was nice of her to give tips and tools you can use in the mean time.

    ReplyDelete
  15. This does suck but YES, she was wonderful about the whole thing.

    Good therapists who can come to the house are generally hard to find. Years ago, we had the most trouble with speech therapists (especially ones in Early Intervention), but luckily we've had a couple of wonderful ones.

    Wani, some days looking at the calendar makes me feel a little nauseous!

    Annie, thanks, I will take that hug!

    Andi, yes, that other stuff sucks too! And oh, Amy, that's hard. Yeah, suck-age!

    Kadiera, a virtual assistant is kind of a brilliant idea. Too bad there's no such thing as a virtual therapist! HA! Wouldn't THAT be amazing! They could telepathically help our kids!

    Maya, don't despair! I have mostly blocked out how insane it was to schedule 10 sessions a week back then. Doing the schedule was like advanced calculus or something. Here's the thing: There are less sessions to juggle once your child is in school, given that he gets sessions in school. But he has less time to do sessions. Max gets home from school late afternoon, and after dinner, he's too wiped for therapy, so we have a two-hour window for a therapist to come to the house. And that two-hour window has to match up with her other clients. You can see the challenges. I hope there are good peeps in the new area you move to! Check if there is a Mothers and More chapter there—I belong to our local branch, and have found their eloop to be incredibly helpful for all sorts of things.

    Momttorney, Max gets three speech sessions, two OTs and two PTs at school. At home, he gets two speeches, one OT (needing one more) and one music therapy. We also need to add another PT into the mix. Hey, I have another idea: Therapists who work on kids as they sleep! Yeah! I am full of great ideas today!

    Thx, Julie, Sherry and all for the good luck.

    AZ, you're lucky you got that!

    ReplyDelete
  16. I hate finding new therapists or doctors. Complete headache. I hope you are able to find a new therapist. Our therapy schedule has become much more manageable thankfully. The appointments with the doctors and various specialists still take up a great deal of time and effort to coordinate. I would love to hire a scheduler to do all of that and just tell me where I need to be and when. Wishful thinking.

    On another note, you mentioned the slant boards for Max. All three of our kids have the slant boards to help with their Ehlers Danlos Syndrome and they are wonderful. I'm not sure if Max would benefit from trying a PenAgain pencil but these have helped our kids as well. My kids have the problem with joints that are too loose and painful. The PenAgain pens and pencils help provide support. I don't know how stiff Max's hands are but based on the design of the pencils you may be able to position them in Max's hand and because they provide support they may help Max keep his hands in the needed position. Here is a link to the company's site: http://www.penagain.com/twistnwrite.html

    Again, really hope you can find a new therapist for Max.

    ReplyDelete
  17. While you are seeking more OT, you might want to try kinesiotape for that hand if you haven't done so. We've used it taping from the forearm and up the back of the hand to the knuckles to keep the nad from dropping and also clenching so easily. I think it has been helpful and it doesn't take a therapy session - you put it on (once you get how - following the insertion points for the muscles, etc.) and then forget about it for a few days. Hannah's hand when relaxed is definitely more open.

    ReplyDelete

Thanks for sharing!