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Post by Kaylis on Jul 27, 2011 4:26:45 GMT -5
Mikah seems to have totally burnt out on his out-of-school therapy place. Actually it's been more and more apparent over the past year. The first to really suffer was speech, which is of course what he needs the most. He was seeing two different people, one he likes and one even I didn't like. With the latter he never did put in much effort or cooperate much. Over time this spread to his work with the one he liked too until (as I posted in a rant last winter) the center decided to drop his speech therapy since, "he wasn't showing any movement toward his goals". For the past several months his OT sessions have become more and more of a struggle to keep him on task. Finally it became clear that he was just frustrated by having to be there and wasn't getting much out of it at all, so that ended last week. Today I spoke to one of his main PTs and she agreed that he probably needed a break. Besides, PT is what he needs the least and it's a pain to go for just one therapy.
So here we are taking a break from all therapy until school starts, then only using what he gets in school. Luckily he seems still at least willing to participate, and often even excited about what they are doing. He'll be getting 2 half-hour speech sessions, twenty minutes of OT a week, music therapy (1/2 hour weekly), PT consulting as needed, and a twice a week activity program centered on movement and learning if they continue it this year. I expect he'll do fine for a while. I guess I'll have some sense when he either really needs to return or is ready to. After all, 4 1/2 years of a 7 1/2 year lifespan is a lot to be spent in and out of the same set of therapy offices. I'm also looking into just getting him some speech somewhere else, since that's still his greatest need.
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Post by Jackie on Jul 27, 2011 8:41:45 GMT -5
You know...I am ...or was...an Occupational Therapist. Therapies like OT, Speech, and PT have evolved over the years and because of that are always looking for new client bases. Just going to a 'therapist' does not really fix anything. The therapists should be thought of as consultants ...not miracle workers. It still falls to us parents to take what they are doing and incorporate it into our kids lives. Hours spent in 'hands on' in an office is not really going to change anything. Most of our kids have the usual DS related low muscle tone, loose joints, and not so great speech (which is also related to the muscle tone in many cases).
I have been concerned that in the last few years DS seems to be being looked at as something that can be 'fixed' by therapy. Granted often the interaction between therapists and our kids is a social positive..but I think parents sometimes (often?) have expectations that exceed the developmental abilities of their child in certain areas. I know that for 3 or 4 years I took Emily religiously to a Rehab center for speech and PT. We realized that it was not really speech she needed but language stimulation. So...we stopped ST per se and put her in a developmental language class at our speech and hearing center. It was really just creative play conducted by a ST. I guess it helped...don't know cuz the 2 yrs she was in there and I observed thru mirrors...I never heard her say a word...LOL. Also in PT we were convinced that she needed all sorts of help with her balance...but..as much as she loved those therapy balls and activities...I think she really got more out of starting kiddie gymnastics at age 4 with other kids. By age 6 her joints had become stronger and her wobbling stopped. Don't get me wrong...have nothing against therapies. But I do think the older the child gets the more it makes them feel that something IS wrong with them. And even parents of infants are often deprived of regular child rearing because their lives are controlled by visits to rehab centers, etc.
There used to be excellent baby exercise books out there (maybe still are)...all sorts of just fun activities for mom and babe to stimulate good muscle delvelopment without it being a mission.
I know there have been advances big time in the ST area...feeding issues for instance which is really great. But I think many of us can relate to the frustration of weekly sessions designed to improve speech and feeling like it is actually inhibiting it. You don't need weekly sessions to learn how to hold a crayon...that is something that should be done in play at home or in preschool. You approach most of these things in the same way you would with a non disabled child.
A good therapist will act as a consultant with short periodic visits to evaluate or change the game plan. Most hands on therapy can be done at home as play. For instance work on things like inappropriate sitting patterns has to be done in the environment where the child is most of the time and while a therapist can show you ...they can't prevent it by weekly visits.
Emily came along at a time when the introduction of therapies for kids with DS was just beginning so I bought into it big time until I realized it was controlling my life, hers, and her 3 siblings. We still pursued some things but with much less frequency and as I have said before used our therapists more as consultants. We, her family , became her 'therapy'.
I know lots of adults who are older than Em and never had any therapy...and they all walk and talk pretty well...just visit a NDSC sometime and you will see.
So I agree...time off is a good thing. But as always it is an individual thing with each family and what they choose to do. Just don't feel guilty if you choose to do less of it.
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Post by kg91207 on Jul 27, 2011 15:53:35 GMT -5
I have kind of wondered myself if they don't get burned out on therapy. Kaelyn has been going since she was 1 month old. Granted, the first 18 mos. she didn't get quality or quantity, but she did receive some form of therapy. I know at times we struggle with getting her to participate and make any progress. Sometimes we don't go because of being out of town or other appointments, then she'll go back and makes a ton of headway. But I wonder, is it because she had a break...or because she's also in Kindermusik, or been swimming a lot this summer, going to school now, or had some play dates? I think it ALL plays in to their progress/development too. When she misses a bunch, then I wonder if that is holding her back. It's like a win/win, lose/lose situation to me sometimes. I DO believe in lots of EARLY intervention. I DO believe they need the intervention for quite sometime. But I ALSO believe that intervention can come in many different forms! And something I've learned the hard way is to SPEAK UP! I really wish I had spoken up much sooner about Kaelyn's therapies and changed her before she was 18 mos. old. But from that I have learned to speak up when I don't like the PT assistant and would rather she not have PT that day if the PTA is going to be working with her!
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Post by Jackie on Jul 27, 2011 16:07:06 GMT -5
good points Brandi. YES YES...early intervention is extremely important. But you are right it can take many forms from hands on to just information and encouragment to parents. I think most of US need that just to gain the self confidence in ourselves to parent a child with special needs. And even though we may think we know it all...sometimes it helps to be pointed in a little different direction too.
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Post by Chris too on Jul 28, 2011 9:15:08 GMT -5
Some great points made here. I am concerned, too, Jackie that too much classical therapy time for older kids might reinforce ideas of inferiority. It's one of the great things about inclusion at school that spending time among their typical peers reinforces the "more alike than different" truth. I still like the classical approach for the little ones though. We saw great gains in Stevie - especially in speech - and overcame swallowing issues, and got her up to speed physically. But last year I took her out of PT altogether because she was doing well in that area and because she was taking both dance and kung fu. Plus she plays with her older brothers (read rough and tumble) all the time (or at least until they get tired of her ) and has always responded well to a playground (running right to it to climb, hang, slide, etc). In kindergarten next year we have her IEP set up for her to have speech therapy mostly in-class and then only for 3 weeks on/3 weeks off. She'll have OT each week but mostly in-class. Still no PT, so almost no pull-outs for focused therapy. I'm anxious to see how well this will go - I'm positive that she's going to like it, but will she meet her goals? I'm betting on "yes."
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Post by momofrussell on Jul 28, 2011 14:07:03 GMT -5
Jackie I never knew you were an OT! Cool!
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Post by Kaylis on Feb 13, 2012 3:25:55 GMT -5
Thanks for the comments . It's now been just over a year of no out-of-school speech (and he didn't have any of that most of the Fall). I don't know if it's because the pressure is off, developmental gains or what but his speech is really getting somewhere for really the first time. He's always been involved in tons of time with "typical" kids of all ages. He was fully included at day care from 3 months until the start of Kindergarten and fully included there. First grade (new school) had some pull-out, but not much and this year they claim he's not pulled out much, but he spends most of his academic time in a carrel in the corner of the classroom. I'm working on improving this, but it is slow going. Anyway, just as his ST was ending he started saying "Yeah" very clearly. It was the first word people not familiar with him understood without any problems. "Nope" followed about two months later. He's since been really trying to verbalize and I can understand a bunch of words. He's even started saying "mom" and "m-me", which has me thrilled. The only negative change I've noticed is that his posture has deteriorated so I've started doing some of the exercise ball work I remember watching. He won't do as much for me as he used to do for the PTs, but I hope it will help.
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Post by Jackie on Feb 13, 2012 9:43:15 GMT -5
sounds like he is doing just fine! I have always maintained that family and real life are often the very best therapies...and I was (in another life LOL...) an occupational therapist. Follow your heart on all this...as you know by now there are really no 'rules' or instruction manuals.
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