Tuesday, January 17, 2012

Balancing therapy, life and fun for our kids

"Get him as much therapy as possible. Over-therapy him."

Those are the words of a renowned pediatric neurologist, spoken to Dave and me the week after Max was born. The doctor been called in for a consult; physicians at our hospital had never before treated a baby who had a bilateral stroke at birth.

I remember this doctor staring kindly at me as I scribbled his words. "You remind me of my wife, she's always taking notes," he said. He didn't give us false hope, but he did talk to us about the "plasticity" of baby's brains and how malleable they are.

I took his "over-therapy" words to heart. As a baby, Max had 12 to 15 sessions of therapy every week, seven days a week. Once he aged out of Early Intervention and went to school, we supplemented with private therapies at home; I regularly did battle with the insurance company to cover them.

Therapy has made a world of difference in Max's abilities. He wouldn't be doing as well as he is if it weren't for the smart, resourceful, dedicated, caring and just plain saint-like therapists who have guided both him and me over the years. We've used their suggestions to make therapy a natural part of Max's life, whether it's getting him to reach for a toy to stretch his arms or making a game out of massaging his mouth, to help relax it and encourage the flow of words.

These days, Max gets daily therapy at home after school. He doesn't have much time for other activities, and lately this has weighed on my mind. As Max has gotten older he's been increasingly receptive to trying new things, and I think he needs more balance—a little less formal therapy, a little more other activities. This goes against my instincts and the "over-therapy" mandate seared into my head in the NICU, and I've struggled with it.

This week, I made a move: I signed Max up for three January/February cooking lessons through a local group, and I cancelled three occupational therapy sessions. He'll grasp a spoon or whisk, stir, pick stuff up, and otherwise work his fine-motor skills. And then, of course, there are the social aspects—giving Max the chance to hang with other kids and have fun.

It would also be so awesome if he learned how to cook because I suck at it.

There's a bigger decision I've been mulling over. Last summer, I checked out a day camp with an amazing inclusionary program. Max would be given a "shadow"—his own counselor—and he'd be in a group with so-called typical kids.

Max is in school throughout the summer, and I'd have to pull him out for two weeks for this camp. That's been a huge "Hmmmmmm...." Missing therapy is one thing, but classes are another. Max is making good progress with grasping math concepts and reading. I know two weeks isn't that long, yet he's worked so hard for what he's learned and I'd hate to see him regress.

I emailed the camp director and asked if parents sometimes pull their kids out of school for camp.

"It all depends on their goals," he wrote back.

Dave and I spoke at length.

Our goals are for Max to achieve and succeed to the best of his abilities.

We'd also very much like him to be part of an inclusionary program; he's never tried one before. It could do a lot for his confidence and his sense of place in this world.

But we've also prioritized a new goal for Max: To have fun.

We're going to speak with his school about pulling Max out for camp. Hopefully, they'll agree it's A Good Thing.


  1. The Balance--it's so tricky.

    We decided to scale back when Maya started preschool, and I had a therapist tell me "I think you should do more". It started a guilt-and-frustrated tumble in my head, and I wrote something called "The Balance": http://niederfamily.blogspot.com/2011/03/balance.html

    But now, we're a few months into school and we've hit our stride, and I wonder about adding in more after school therapies (we have 2). I guess the thing of it is, we'll always be re-balancing. Like, forever.

    I like to think that there's always an upside---if you keep the therapy intensive, the upside might be faster progress on a lot of skills. If you switch to some other activities, the upside might be more social growth. Whatever you choose, he will do great, I'm sure of it :)

  2. Eliza's therapy schedule was pretty brutal for her first 3.5 years, anywhere from 15 to 20 hours per week. When she started a full time special ed preschool, she received 3 times per week each of OT/PT and Speech at school and another 2 sessions each of OT and Speech after school. While she clearly benefited from it, I was always a bit guilt ridden that Eliza was missing out on all the things typical kids did. But we did take therapy "vacation" periodically, a week or two a year when we would just hang around doing fun kid-stuff. At almost 6 now and in an integrated program, Eliza still gets the same amount of therapy in school but I have cut down her after school therapy to 2 sessions per week. Eliza has finally figured out that a play date is something done with her 5 to 6 year old friends and not a woman between the age of 28 and 38, the average demographic of her therapists :)

    It is a tough call on how to balance therapy needs with typical childhood activities. I think at the end of the day, we all have to go with our gut and cross our fingers that we chose wisely.

  3. I am not a parent having said that I can see things from Max's point of you which may or may not be of help to you my opinion is that you should send him to camp because he will have the opportunity to tests his limits and find out that there's a lot he can do and as for you worrying that he might regress maybe you could hire a tutor to help him catch up when he gets back.

  4. For us, putting Simon in an inclusion program WAS therapeutic in and of itself. We've seen amazing language and social skills gains just by letting him be part of a lager group of "typical" kids. Good luck with what I know is a tough decision!

  5. As a therapist, I've found that a short break from therapy especially when you are really addressing goals from a different direction often results in tremendous benefits. Not just a sudden surge ahead, but providing an opportunity to carryover skills learned in a therapy session to "real" life. Wishing you peace with your decision!

  6. You illustrate the difficulty of making decisions on the 'amount' of therapy well, Ellen.

    I like Anne's term 'therapy vacation'.

    Time is finite. Focusing on goals for a child is key, agreed.

    I'm more for the cooking skills he will begin to acquire than the 'fun' he will have. Fun is the means to the skill - like therapy. The re-phrase is important to me - as well as my question of why cooking is not a part his OT - ? 'Course, it is near impossible to have the group effect in an OT session.

    Thanks for another great post!

  7. Yes--common dilemma. Nice that your son has the option of summer school. Our kids w special needs are off for 8 to 10 weeks in the summer. It's too long a break!

    Therapies are great. But sometimes our kids experience the greatest leaps in confidence and abilities doing real life experiences alongside "typical" peers.

  8. Good for you, Ellen! I bet he'd like camp and that sounds like a great opportunity for him! We have the exact same struggles with Sarai. She now gets 12 therapies a week/ 7 days a week. Our babysitter watches her at home, which has been great because she's hardly been sick in 2 years, but she's missing out in so much social interaction with other kids. I'm looking forward (and totally terrified!) for preschool to start this summer. Time to be around other kids!

  9. I'm all for taking breaks. Baba and I have taken 2 breaks for 2 to 3 weeks at a time...and he's only 9 months old...and I'm the therapist! Sometimes, we need a chance to be typical mom and son!!

    As far as time with typical kids...that is so valuable. I take him to parks and let him spend time watching and occasionally interacting with kids way older than him!

    Perhaps for the future, the therapists might find ways to do therapy in different places. I've met children on the playground, coffee shop, or other places.

    Maybe a therapist would be willing to be a part of a play date. She/he could provide therapeutic activities? Social skills is definitely a huge part of therapy that could be fun!!

  10. Like you, we were doing intensive therapy for the first 5 -7 years of Cameron's life. I am so impressed with the doctor who told you to do lots of therapy - that'a a first.

    We eventually burnt out so do allow yourselves a break now and again. It's important. We also ended up with Cameron deciding that Mum shouldn't be in the same sentence as therapy and certainly shouldn't do any with him - it got very difficult. He wanted a Mum at home not a therapist.

    There was a study done here that showed that children who grew up in one to one therapy developed a view that adults should interact with them one on one and they saw that these children developed problems because of this. I saw this happen for Cameron - he struggled to understand if an adult didn't interact with him and only had socialization skills with adults.

    You know the saying - a change is as good as a holiday - last year we had a family holiday for two weeks and watching how Cameron responded was amazing. Sometimes a different evironment and different people can make a huge difference.

    So if you haven't guessed - I think a two week break is a great idea.

  11. I am so right there with you! Don't you just wish you had a crystal ball? I just try to make my decisions based on which I have the least chance of regretting (although I pretend I don't believe in regret). Missing 2 weeks of school could result in a tiny bit of backslide sure, but if you'd always wonder how he'd do and if he'd HAVE FUN at the camp, I say go for it! Just my 2 cents...and likely not even worth that. :)

  12. My husband would also throw in there that it is important to boost your child's self-esteem. Honestly that could be in school or at summer camp but encouraging Max to try new things sounds like a great idea to me.
    I am a therapist and since taking my child to therapy I can completely see the valve of doing "therapy" outside of therapy. My daughter's therapists have been some of our best friends and leaders in this journey, without a doubt. They have limits too.
    It's a working balance..

  13. In my clinical opinion, he NEEDS the break and the change in the routine. It's crucial for his ability to integrate everything he's been doing. When the children I treat come back after a break of a week or two, it's often quite breathtaking to see how they have surged ahead during the interim.

    Fun is just as important to a developing child as therapy. It IS therapy. Fun is therapeutic! Fun is what people have when they have fulfilled their obligations and can relax and enjoy themselves and forget about their troubles for a while. If you don't have that in your life, something to look forward to after all of your effort, it wears you down.

    Being "on" all the time is grueling, and he needs to recharge his batteries.

    Now that he's a bit older it's not as urgent to hammer on his nervous system as it was when he was a baby.

  14. Well said, Loren! As a therapist, I think kids benefit from a break from therapy. Neither parents nor therapists should expect kids to "work" all of the time. Some of the most therapeutic experiences for kids are those extras (like camp) outside of therapy. I appreciate that parents value therapy, but remember, it's ok to miss therapy now and then!

    On another note, I understand what the doctor was saying about "over-therapy" your baby, because therapy is so crucial in the early days. However, with that said, I don't think doctors fully understand the emotional toll therapy can place on families and kids, because they don't see the day to day reality of multiple therapy appointments every week, year after year.

    Whatever decision you make, let it be a guilt-free decision, and know that Max will grow from whatever experiences you provide him, even if they don't have "therapy" in the title.


  15. I liked the idea of working with your therapist to incoorperate some social skills/therapy playdates. what good are any skills with out the opportunity to apply them in a real life scenario. With Owen, breaks from therapy or school cause regression. We have speech, ot and pt twice a week after school and also the school psychologist has been coming to our home once per week to work on behavioral skills with us. In my opinion, as with anything that is important to you, sit down and make a list of your short term goals for your child and then long term. I mean nitty gritty goals. Then prioritize. If something can be set on the back burner and your child will still be able to meet the long term goal, than go for it. A child should never feel "burned out" with therapies. Its up to the therapists and you to keep it fresh and fun.

  16. I like the idea of prioritizing "fun!" It's so important for all kids, but it's easy to loose site of. We have one "babysitter" who comes to help take care of Jackson and give me a break a few times a week, and i thought about teaching him how to do different therapies with Jack, but decided no. I want his time with Patch to be just about fun, and hanging with his buddy. and I'm so very glad I did! Good luck!!

  17. I am so encouraged by the idea of "therapy vacations," especially coming from the mouths of therapists! And also love the idea of having the therapist accompany Max on a playdate.

    I'm pursuing the two-week break for camp with Max's school, and will let you know what happens.

  18. as a therapist, i say: YES, balance! happiness is the most important thing.

  19. I think two weeks of camp would be a good thing for sure! Two weeks of having fun, being with typical peers, and doing things he might not have a chance to do again, outweighs two weeks of the same usual schooling he will have for the rest of the summer and school year!
    I once went to a seminar where a speaker spoke about something I've never forgotten. She talked about the importance of giving kids the highest QUALITY of life... giving them as many HAPPY moments as possible... and how this must sometimes outweigh the importance of school and other things.

  20. I must say I'm NOT impressed by the doctor who told you this"Get him as much therapy as possible. Over-therapy him." Doctors should know better. Dont they know- we have lifes and other things to do? Over therapy is NEVER a good idea. In fact, in the early years, less therapy is better. I'm not saying do no therapy, I'm saying do a limited amount in the early years.

    2 weeks of camp is a good thing. It might have improved Max's social, communication and talking skills and boosted his confidence. Did it go well? I want to put Lola in a camp so are there ones which are for children with physical disabilities?


Thanks for sharing!

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