Wednesday, May 19, 2010

Therapies for kids with special needs (up the wazoo)



I recently read a thought-provoking piece on Babble by a wonderful writer I know, Lynn Harris, about whether too many kids are getting occupational therapy. Among other factors Lynn addressed how some moms, eager to give their kids a competitive edge and get them into the "right" kind of school, haul them to OT if they show the slightest delay. I don't know Those Kinds of Moms. If anything, I've encountered ones who were hesitant to get their typical kids OT or speech because to them, it carried some sort of stigma.

Lynn's piece that got me thinking about what life would be like if Max needed only one kind of therapy. It's really hard to imagine; he's been in various forms of therapy since he was a month old. In his early years Max got aquatic therapy and hippotherapy (horseback riding), along with mainstream stuff. Toys helped, too. There's Max above at age two with one that helped him pull to stand and encouraged him to grasp balls (it's the Fisher-Price Baby Playzone: Pull Up Ball Blast).

Here's our current list of therapies:

* Occupational therapy: Twice a week at school, twice a week at home (from the therapist who's seen Max since he was two months old)
* Physical therapy: Twice a week at school
* Speech therapy: Three times a week at school, plus twice during weekdays with one speech therapist and once on Saturday with another
* Music therapy: Once a week
* Giggles therapy: All the time, as often as we can. This is a cutting-edge therapy developed by me and Dave that involves making silly sounds, doing crazy dances, singing "MAX IS PURPLE-PURPLE-PURPLE-PURPLE" at the top of our lungs or bascially doing anything we can to make Max laugh. It may just be the most feel-good therapy ever invented. Soon to be patented!


Oh, and wait, I almost forgot about the world-famous, highly controversial toilet therapy. Max was mesmerized by the one on our first floor. It totally encouraged him to pull to stand.

So, what does your child's therapy list look like these days?

42 comments:

  1. You knew we couldn't resist this question, right?

    Tradition PT-twice a week
    OT--once a week
    Speech--once a week
    Instruction--once a week

    Feldenkrais--twice a week
    ABR--I shoot for 90 min. a day.

    When Charlie was in private PT, there was a little girl there getting OT who seemed completely normal--reliant on mom, but normal. I thought mom was a little hyper to have her in OT.

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  2. Your blog is such a relief. Reading it, I don't feel so alone. While we are yet to get a diagnosis, I fear one is around the corner. For now, our therapy schedule is:
    Speech - once a week
    OT- once a week
    Psych - once a week.

    It's all private. I am hoping to get some help int the public school system next year but I'm not banking on it.

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  3. Barbara from BostonMay 19, 2010 at 12:40 AM

    i have heard of potty therapy but it does not usually include standing up :-} Those pictures are Maxilicious

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  4. Frequent giveaway poster and reader, infrequent otherwise poster here. :)

    Right now, we have feeding, OT (both private and after daycare/work), and speech/feeding (through the state and at school) once a week each. We just had to drop PT due to issues with our provider, but we may start it up again soon. Also, Floortime at home as much as possible.

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  5. Our Max gets:

    School OT and Speech - once a week
    Private OT - once a week
    Private PT -once a week
    Private group speech- once a week

    100 Kisses therapy on cheeks that are still baby cheeks to me....daily if allowed.

    I really want a bumper sticker that says "Therapy Mom"...instead of Soccer Mom. I am learning to make all our sessions fun for everyone. My daughter and I dress up and wear matching necklaces. We are FANCY together while Max meets with his people.

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  6. What does it look like or what SHOULD it look like?

    I am in this strange "place" ... Zoey has been hit SO hard that since leukemia treatment has been over and more specifically,under 3 early intervention,I have slacked.Mostly in the department that she needs the most ... PT.I need someone to tell me,what I already know ... my slacking is doing her a disservice not that because she has worked so hard to survive and the fact that I HATE to see her cry,should I let up.

    therapies are:vision,PT,OT,speech and feeding ... and all I really want to do is hold her and love her and kiss her and really I need to help her get walking...

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  7. We just got a PT eval (written) today in the mail after a 2-month break. Peyton is 3.5 and has been in private PT about once per week for 2 years.

    So for the summer she will get:
    Private PT 2x/week (1 land, 1 water)
    School PT 1x/week
    School OT 1x/week
    Hippotherapy 1x/week (if she tolerates the horse)

    Speech is on an ad-hoc basis with school for now.

    But here's what's breaking my heart today: the PT eval says stationary gross motor skills are at 8 months, locomotion at 7 months. These have improved by 2 and 1 month(s), respectively, in the past 2 years of PT. Cue kick to the stomach.

    On top of my worries that insurance will discontinue coverage of PT, I can't read or think about this without crying. I know our progress has been slow yet steady, but I can't help but feel I'm not doing enough.

    Peyton goes to school 4 days per week, still takes naps, is a slow eater and still needs time to play. We try to do as much at home as we can, but are we holding her back? I work full time and hold the insurance for myself and Peyton (hubby's insurance is crappy).

    How do others keep to a regular home therapy schedule? Do you use a calendar to track how much time you spend doing various activities? I'm feeling at a loss.

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  8. I am so glad you wrote this tonite - I am about to embark on hippotherapy at great cost to my family - those of you who did it, what did you think? Is it really all that? Worth $3000 a year?

    Our schedule:

    PT 2x a month at Shriners
    OT 2x a month at Shriners
    PT 4x a month with Early Intervention so we can meet at playgrounds in the good weather
    OT 2x a month with Early Intervention

    we don't do speech yet but will if Hannah doesn't get going pretty soon

    I take her to Little Gym which isn't regular therapy but a fun place to keep her crawling and weight bearing through her wek side/trunk and acting like other kids

    Hannah is just now walking, come over to my blog and have a look and I have an AFO/shoe question I need help with for single AFO users, please.

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  9. Lana gets Speech five times per week and OT twice a week. Oh, and we participate in giggles therapy daily. ;)

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  10. Heather: It really is so hard to juggle it all. Your list sure doesn't sound like you're slacking.... Has Zoey yet tried a walker? Max had a Pony walker and a Kaye Posterior Walker that totally encouraged him to get around.

    Meadow: Take heart.... I know that sounds discouraging, but it is PROGRESS. Our kids progress at their own rate. Max progressed very slowly in his early years, and at times it killed me because I so desperately wanted him to do stuff. But I also knew it was good that he was moving along. Our neurologist has always said, as long as Max keeps progressing, that's all that matters. At 3.5, Peyton is still so young... She has time. Lots and lots of time. She will keep coming along at her own pace. Perhaps you can push the school to give her more therapy? Yes, I kept a calendar at home to keep track of all the therapy, I made one on my computer and made copies for me, my husband, our babysitter, the therapists. I also had all the therapists write notes in one notebook, so I had a record of stuff.

    Rebecca: A "Therapy Mom" bumper sticker? Love it! Does your daughter like Fancy Nancy?

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  11. Ginger, about hippotherapy: I thought it was totally worth it for Max, for several reasons. It helped strengthen his trunk control. It helped him work on balance. It helped teach him to grasp a handlebar. It was good sensory-wise, too. And it was just plain fun! If you can swing it, go for it. I will come check out Hannah walking! WOOO HOOOO!!!!

    Hopefully a single-AFO user mom will show up here to answer your q.

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  12. Oh Ellen, That's brave of you to ask that question! What a long list from everyone!
    Right now we are at...
    OT: once a week
    PT: twice, once in pool once on land
    Speech: once a week
    Therapeutic riding: once a week
    Although I am afraid we are going to lose pool therapy...

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  13. Chiming-in on my belief in the effectiveness of giggle-therapy and hippotherapy for promoting a child's development. Agreeing with Ellen on individual developmental timelines. The therapies serve to promote the best possible achievement - possible for a particular child - who would not likely be getting therapy unless he had a development-altering-diagnosis (excepting kids of uber-parents).

    Despite the particulars of how many times a week you have appointments with professionals the carry-over of habits that promote development (giggling) is as important as the dosage of therapy. At the same time, I hope Heather will ease-up on beating-up herself - thinking she is not doing enough. Encouraging everyone to lean on their therapists to help them make decisions as to when (and how) to push their children.

    On the cost of hippotherapy - have you ever added-up the cost of participation in soccer? Dance is very expensive also.

    Your forum here is very helpful, Ellen. Thanks! Barbara

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  14. Monkey boy is in therapy boot camp to prepare for his upcoming surgery, so we're quite busy. He has PT five days per week, not counting stretching and additional activities at home on the weekends. He is also going to soon start an integrated gym class (sort of like Gymboree, but especially for kids with motor skills delays), so I guess that counts as recreational therapy.
    Unfortunately, Monkey's wonderful OT recently retired and we're waiting for his replacement therapist. In the meantime, we're doing OT activities at home. He's also soon going to have another round of constraint induced therapy (therapy involving putting a cast on the strong arm to encourage the involved arm to work), which will involve 4 hours of OT per day, five days per week for three weeks.

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  15. Alex (who will be 2 next month) has....

    Early Intervention (school) provided PT, OT, Speech, and "teacher time" scheduled each week, for a half hour each...though it seems like someone cancels from that group each week.

    Private pay, 1 hr each:
    2 PT
    2 OT
    2 Speech

    All of our therapy is in-home, and almost all is during weekday hours since he has nursing.

    We are, of course, doing tons of other "developmentally appropriate" things with him: ie, playing, reading stories, singing songs, stacking blocks, throwing balls, etc etc etc etc.

    We're somewhat disappointed with the speech therapy from school. Both OTs are somewhat disappointed with us because we don't make him eat purees with a spoon at every meal - given his control issues, I figure if he eats finger foods by himself, that's good enough at dinner time for me.

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  16. A really hard question to answer - where do you draw the line between being a therapy-mom and letting you child just be a kid?

    Hippotherapy is GREAT. You can do OT, PT, or speech. The place we go to is non-profit and they have scholarships.

    Luke (in 1st grade)

    speech 20 min 5x week @school
    OT 30 min 2X week @school
    discrete trial (ABA) ~120 min/day at school (this is a great learning method for Luke)

    Hippotherapy 1X week w/ speech therapist (this is the only place he will talk)
    OT/feeding thera 1X week

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  17. Two and a half year old triplets: PT - twice a week, OT - twice a week, early intervention - once a week. About to start vision and possibly speech. Transitioning form regional at home services to CCS next month. Busy!

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  18. Barbara raises SUCH a good point here—it's not about the 45-minute therapy sessions, it's about how we apply the lessons fro the sessions to our kids' lives.

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  19. Wow! Your schedule sounds exhausting!

    Right now we get special help at our public school school (reading, language help as well as meeting weekly with a counselor to work on anger management) but stopped private therapies because they are so expensive and not covered by insurance. I feel like every thing I do for my little guy is therapy. Even playing games every night to work on counting, letters, concepts, etc. Not to mention learning to handle anger about not always winning.

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  20. It's so nice to see what other families are doing therapy wise. Sometimes you think maybe you're not doing enough, not trying hard enough... but it looks like we're doing about the same types of therapy and with the same amount of frequency. PT, OT, Speech, ABM/Feldenkrais, warm water... and then praying a ton on top of that.

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  21. I too feel like we don't do enough.

    Private OT - 1x week
    Private aqua therapy (PT) - 2x month but moving to weekly during summer
    Early Intervention OT - 2x month
    Early Intervention PT - 2x month
    Early Intervention Speech - 2x month

    I have been very disappointed with the hours that have been offered through Early Intervention. I have always hoped for more frequent visits, but have not been able to get them. We are starting the transition to preschool in the next 6 months or so. That makes me nervous because I feel like she is going to get even less therapy at school. They will do things that are appropriate for a school setting, but I have a feeling we will need to invest more in private therapy to get her what she really needs. Guess I have to get used to that!

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  22. We're enjoying a peaceful lull in the therapy sessions at the moment! Button's OT is done on a daily basis in his school as is ST (which he thankfully doesn't need so much!)His PT is finished. To be honest, I don't know what to do with my time! I'm working on his "how to be a kid" skills at the moment! Your schedule sounds pretty full on!

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  23. Emma is still in early intervention, so therapies are pretty good. I'm worried about how much we will get when she starts school in the fall, but I'm trying to convince myself not to worry yet as there will be plenty of time for worrying in the fall!

    Here is our schedule:

    OT - 3x/week
    PT - 2/week
    Speech - 2x/week
    Auditory Verbal (hearing therapy for using her cochlear implant) - 2x/week
    Educator - 1x/week
    Therapeutic Riding - 1x/week

    Also, I wanted to chime in about the hippotherapy. We went the therapeutic riding route that has loving, trained therapeutic riding professionals that are not PTs that work with Emma on our goals and riding on her pony. Her OT joined us there one day and gave tips on hot to maximize Emma's arms and all her other therapists are welcome to visit, too, and the instructors will follow their suggestions. The cost is so much more affordable than hippotherapy. We pay $108/month which is for 4 30min. lessons/month. We couldn't afford the hippotherapy, and really love the therapeutic riding farm, instructors, pretty much everything about it!

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  24. I am feeling a bit blue today after several doctor appointments, therapies, an IEP meeting and trip to the orthotists in the last three days. I have often wondered what on earth people do when they don't have all these appointments??? I have to admit, I sometimes feel happy taking my Max to all these appointments - its our thing. We have our rituals and our routines with each and every one. I must be insane, but ever since he was a baby, I feel the happiest when its just the two of us forging ahead on our own personal war against CP!

    Now at 6, almost 7, he has:
    PT - 4 times a week - 2 at school, one at home, one at hospital
    OT - 2 times a week at school
    Feldenkrais - 1 time a week ( and a long drive away!)
    We gave up hippotherapy about a year ago because it was exhausting and expensive.
    We used to have speech, feeding and swimming too!!

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    Replies
    1. What on earth do people do when they don't have these appointments? Here is my answer. Keep in mind that I'm a mom to a mostly typical baby Noah. Instead of doctor and therapy appointments, Noah and I attend weekly baby swimming lessons. Oh and we go on to trips to museums, cafés and parks. I'm actually grateful that he is mostly typically developing. I've learned a lot more about CP reading your posts.

      *Noah does have CP, a mild rare kind that only affects 1 arm/leg*.

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    2. Part 2

      Instead of numerous appointments, Noah and I go shopping, to the park, restaurants, art galleries and museums. We also have play dates and our weekly swimming lessons. Noah likes to play in the park/pool. Swimming is a form of physical therapy anyway. So is running.

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  25. in home:
    PT and vision teacher- once/week
    Speech- once a week or every other week
    OT every other week

    outside the home:
    hippotherapy every week
    aqua every week
    PT twice a week
    PT/OT co-treat twice a week.
    possibly speech once a week

    why is it that I still feel this isn't enough?? when school starts, home visits will drop and all the sessions will be at school, hopefully once a week (they said they train the paras to do stretches and positioning stuff)

    I'm looking for a local ABM/Feldenkrais therapy but that will have to be out of pocket. trying to figure out a fundraiser to do

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  26. For the Single AFO MOM:
    Try Pedipeds - Zappos sells them and they have double foot bed inserts - the non-AFO side can wear 2 while the AFO side has none!

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  27. Well, when she was little, care and therapy seemed to be a 24/7 job. Now she is 13 (and cos I have to manage a teenager and a 9yo with aspergers) she gets the following:

    OT: once a week in school
    Speech: once a week in school
    Physio: in school and 5 x a week at home by me
    Retail therapy: as often as we can manage as we both love it!

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  28. wow. just reading these comments is exhausting.
    Miles (the big 3 on Monday!)
    PT - 3 hrs week
    OT 2 hrs a week
    Speech/Aug comm /feeding -1 hr week
    Intensive accupuncture 10 days on, 5 days off.. for neurology & his nervous system ( - the verdict is out but it really relaxes him).
    Listening therapy - 2x a day 20mins -for sleep regulation -it's working !
    we're starting craniosacral & chiropractic back up in a few weeks.
    It sounds like too much when I type it all out.. we still have time for lots of fun though.

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  29. Sometimes I feel like my whole life is therapy!!
    -OT 2hrs/week
    -Speech 3 hours/week
    -PT once every 4 months (so much OT is physical therPy-ish)
    -Play therapy (floortime) 5 hours/week

    we also dabble in craniosacral stuff, linstenibg therapies at home in our own swing, chiropractic, etc.
    This is ALL private. Little Bird is in a private Preschool with full inclusion and a shadow. No way will it look like this in the next year or so. Our list of therapies is ever evolving. Guess it's a work in progress like the rest of us!!

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  30. We have been untraditional in that we didn't do a ton of therapy. For us, it felt like too much for her, for the boys, for us. We averaged about once a week for each type...if that. Once she got into school at 3, we only did therapy at school...OT/PT once a week and ST 2 times a week. Once she turned 7, we started hippotherapy once a week...and she goes to "therapy camp" over the summer...but we sure do a lot of "incorporating it into every day life so it doesn't seem like therapy" and a lot of "family life fun" therapy!

    P.S. She's doing great! ;)

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  31. My son has OT once a week, speech three times a week and PT once a week. He rides horses every day, as I show and train them, and some days I think that's the best therapy of all. He really loves his pony wanting to communicating with her has helped with his speech.

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  32. Ellen - yes we are Fancy Nancy fans here. My daughter is only 5 and Max is 3. Since most therapy is play based, it is easy for her to get jealous and feel left out. Most of our therapists are great about trying to include her but she knows we are there for Max. Dressing us and wearing boas and jewelry helps her feel special. It is a small step. I am sure you have covered this before in your blog (I will go look it up) but if you feel like revisiting how to balance typical and special needs siblings I would love to know your thoughts and see everyones comments. I know I need help my daughter wants to get X-rays just because Max got them. Then I watch her playing X-ray with him for three days straight.

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  33. Wow-- this is what I needed to read today. And I thought I was asking for too much in my sons' IEPS. You go girl!

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  34. The list of therapies for my son is down to none. But informal therapy like you spoke about is constant at home and with his special ed teachers at school.
    I'm seriously considering getting him back in speech therapy because of his braces.

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  35. Rebecca, I've touched on Max-Sabrina issues (and joys!), but there's more than enough fodder for another post—will do!

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  36. right now we are having OT in home twice a week and speech once a month as a console. but in Aug hes going in the school system so we are going to have

    private ot twice a week
    in school ot once a week
    private speech once a week
    in school speech once a week

    oh and in the summers we do horse therapy as well and thanks to her being a family friend we don't have the money issue thank god !!!!

    and he is going to have a one to one aid in school as well with him all the time for the first few months or so them we are going to try to lessen the aids interaction through out the year in hopes that he wont need him/her.

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  37. I no longer reive therpey but i used to
    I had speech threpy from the time I was 6 monthes old until I was 10.(age 6 monthes to 5 early intervention,ages 5 though 10 school then i got out of it!)
    OT from 6 monthes to seven at first early intervention then school
    PT I had it from the time i was 6monthes to the time i was 11(5th grade)the last year i hated it because my old PT retired and the new one was mean.I also recived vision therpy on and off for 4 years but it was not doing a thing.
    And seeing an psycholgist 2x a year due to anzetiey scince i was 5 to now

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  38. Laura my 13 year old daughter with Down Syndrome gets:
    in school:
    an hour of speech daily
    an hour of OT daily
    30 minutes of PT daily
    30 minutes of Assitive Tech (AT) a week
    30 minutes of group consuling a week
    30 minutes yoga daily
    1 hour music therapy a week
    out of school:
    1 hour of speech 3x a week
    1 hour of OT 3x a week
    45 min of vison therapy daily
    1 hour of art/music therapy a week

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  39. Sorry I had to chime in although I know my reply is late. Lola does 3 hours of PT twice a week. Once a week, I take Lola to a pool at a local hospital. She enjoys it and its a good workout for her. Also, we read books, play games and sing songs.

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  40. Noah gets PT once a week at a local clinic. I made the decision not to do too much formal therapy. Instead, we go out to cafés, galleries and museums. Both of us also participate in a swimming class once a week. Rather then attend doctor and therapy appointments, we have play dates. I didn't refer Noah to EI as I'm convinced he would not qualify as he doesn't have development delays. Noah is going to be 2 years old in December.

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Thanks for sharing!