Learning To Swim And SPD Related Issues

by Lori
(Oklahoma)

My nine year old academically gifted son with mild hypotonia and SPD is taking group swimming lessons with six year olds because most kids his age already know how to swim. He is still having more trouble than the other kids even though he is several years older.


I am afraid this will be like all of the other times he took lessons and he will not learn to swim. By the time he gets used to the temperature of the water, water being splashed in his face, and having to put his face in the water, the lesson is over and he still doesn't know how to swim. He even tried expensive private lessons once, but the instructor just kept looking at me like she didn't know what to do with him.

My son has never had any kind of therapy even though he showed signs of vestibular dysfunction and poor muscle tone and coordination. He did have an occupational therapy assessment done once at age seven after my special ed teacher friend noticed things like his fear of going up or down stairs at age 5 and that he was very fidgety and would just watch other kids play on the playground or talk to the teachers instead of playing on the playground equipment. But the regular pediatrician seemed reluctant to refer us to a developmental pediatrician because he didn't think my son's mild hypotonia and coordination issues were that much of a problem. It was a good thing my husband was with me. We got the referral.

During the occupational therapy assessment my son was able to skip, hop, jump, and everything else they asked him to do but the thing is it took him longer than most kids to learn to do these things. He had worked very hard on learning to skip for a play he was in. He had worked very hard on learning to do somersaults in a gymnastics class at age 5 and that was about all he learned to do there. He would end up falling to the floor whenever he tried to do anything else. Other kids were moving up to the next level and the teacher was not very nice so we had to take him out of that. She was one of many people we have run into that think if you are intelligent you should also be able to learn to do physical things without a problem and if you can't you must be clowning around or not really trying. The day we pulled him out of gymnastics, the teacher had given a sticker to all the other kids for doing a good job. My son was heartbroken. We had told the owner of the gymnastics place about my son's difficulties. People just don't understand or they don't care.

The occupational therapist and the developmental pediatrician did not recommend any kind of therapy two years ago and even if they did I don't think our insurance, Tricare, would cover it because the Tricare info I found online said "After extensive review of medical literature, it has not been established that Sensory Integration Therapy is of proven efficacy."

The OT and developmental pediatrician only recommended putting him in an activity like martial arts and doing some of the activities in "The Out of Sync Child Has Fun" and having him use a chin up bar. We did what we could. That was two years ago and there is still a difference.

At my son's swimming lessons, a lady with a six year old daughter with hypotonia noticed my son's differences. Her daughter is on Medicaid so she gets therapy. We are middle class so we can't get help and we can't afford it. My husband works full time and is a retired military veteran so he makes too much money, but since we have to homeschool because of my son's academic and physical differences we can't afford anything else on top of educational supplies, piano lessons, theatre which includes dancing (this is the only place he has close friends) and swimming, and there is no way we can afford anything else.

At Cub Scout camp my son does not have the endurance that the other scouts have. He gets tired before they do and has to miss some of the activities. He can't sleep because he hears noises that most people don't notice.

I think his differences are beginning to be more noticeable now because other kids' physical skills keep progressing and his seem to stay the same. He doesn't get worse, but he doesn't get better either.

It feels like nobody understands, especially at Cub Scout camp. I know they think I should try to toughen him up by forcing him to do things he is not very good at. I know they think I am the reason he is the way he is. I saw it in the cub scout leader's eyes when I tried to explain that might not be a good idea to let my son stay in a tent with other boys who do not have his issues. We tried to talk my son into trying it, but in the end we let him make his own decision and he decided to stay with us.

The SPD Help Line Answers...


Hi Lori,

I have to be honest, my answers to your questions will be direct as I feel there are some things that should be happening that aren't. This is to help, not to hurt, ok? I do hope you take it this way.

The most important statement in your submission was "my son has never had any kind of therapy even though he showed signs of vestibular dysfunction, poor muscle tone and coordination." I understand you said no therapy was recommended (or even if it was, insurance issues... I'll talk about that in a minute). My question is... WHY? I find it hard to imagine there were developmental issues and no therapy took place. So... someone dropped the ball on this one (the therapist? you? a doctor? insurance?). At this point, it doesn't matter who... it just matters that things have not gotten better for him because he has not received treatment/therapy. Here in lies the problem. He needs therapy. He will not get better without therapy. Bottom line.

Ok, the second thing that concerns me is that he is in a group of six year olds for swimming. His self-esteem is bound to suffer. He definitely needs therapy before he needs to be in swimming lessons... to correct and address the underlying problem. You were right when you talked about not forcing him to do things his body cannot do. This applies to the swimming as well. Although swimming is and can be very therapeutic for SPD kids, it needs to be done with a one to one (or 2,3 to 1, etc.) ratio, in a therapeutic setting with a qualified professional. For example, an OT or PT. Or, if it is done via regular swimming lessons it must be done with a teacher who understands SPD and his particular issues and can work with him the way he needs to be worked with.

Which brings me to another point... the insurance issue. You stated that you thought someone else you knew received therapy because they get Medicaid? And you won't/don't/may not because you have TriCare? This is not necessarily the case. What IS true is that it depends on BOTH the insurance and the billing codes that are used, as well as the diagnoses. So... for SPD alone, you are right. Most insurances will deny it, even though we KNOW SI Therapy is effective. However, if the clinic or OT use diagnostic codes that are acceptable for reimbursement, such as coordination disorder, hypotonia, etc. (each insurance may be different) then therapy may indeed be covered. For some commonly used diagnostic codes for insurance reimbursement, click here. These may help your son get the therapy he needs. Fighting hard for services is a battle most of us are very familiar with... know that you are not alone in this! I would also recommend (and it will probably be required) another evaluation to see where he is at now.

His skills and the therapy you have already provided? Ok, when you say, "we did what we could"... can you explain this further? How much, how often, consistently every day, how long, what activities, etc. What were you doing on a routine, regular, consistent basis that would have enabled progress? I am not saying you haven't done enough... I am just wondering what you HAVE done up to this point.

As for his skip, hop, jump, etc. skills... I am actually encouraged that he "passed" this part of the evaluation. It means that with a LOT of practice he can do these tasks. This is GOOD! What I wonder about is... did the therapist who evaluated him consider the "quality" of his running, hopping, skipping, jumping, etc.? Quality can also tell us a story, you know?

Another thought/question... did you ever receive a copy of his evaluation? This you should have received and the results should have been gone over and explained to you. I am not sure this was done properly if it left you feeling somewhat lost, unsure, and on your own. So, I am curious about this... where and how they left things with you. Can you say more about this?

Please understand, I am so sorry that your son has had some of those experiences regarding other people's reactions and lack of understanding. I am truly sorry. I sure wish our kids did not have to be put through such difficult times. Oh, the sticker... no sticker for him?? Geesh, how unfair! Poor little guy. That's just wrong... so wrong!

Since my answer plus the submission were too long for this program (oops), I had to add the rest of my help line answer as a comment from a reader. Just click on the comments from other readers link below this (sorry about that)...

Comments for Learning To Swim And SPD Related Issues

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Jul 17, 2015
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To lori
by: Angier

Lori,
I know exactly where ur coming from! People can be so cruel and will give their opinion openly! My son is 7 now amd we have overcome many hurtles! I have been told by many that theres nothing wrong w my son, i agree.... We are all created differently! We call them quirks! I hav even been told that i am the Problem! Well, ignore others opinions and go with ur Gut! Spd is REAL! Research it, read blogs, more people than u realize r dealing w same thing!
Good luck,
Angie

Dec 14, 2011
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Swimming and Sensory Processing disorders, and low muscle tone
by: Anonymous

Hi Lori,
We have a program called Angelfish Therapy which specializes in working with children just like your son. Please do not despair and look at our website. Your son is the reason we do what we do.
Splashingly yours,
Ailene and Cindy
co-owners of Angelfish Therapy

Oct 10, 2007
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by: Lori

Because the occupational therapist's report showed that my son could do the things on the assessment, the developmental pediatrician told us she didn't need to see him any more. We trusted the "experts." We were not told anything about sensory integration therapy. I didn't know there was such a thing until recently, when my special ed teacher friend told me about it.

My son has been doing chin-ups at home and working on a weight machine to build strenth during breaks. He is homeschooled (we were told we needed to) and he does not sit at a desk all day. I encourage him to move around. He takes breaks after about every hour of school work to move around. For a while he used his Dance, Dance Revolution game and it seemed to help a little with dancing in his acting class. We didn't know what else to do.

Self esteem issues? Well the swimming instructor at the YMCA just called him a "wuss" at today's lesson.

Our doctor's appointment is Friday and yes, we will insist that we get a referral to someone who has experience with sensory issues.

Oct 10, 2007
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Learning To Swim (continued by help line)
by:

All of this said, there is one thing I do know... the more YOU understand the more others will. You will be able to explain things in a way that will enable others to understand and work with your son in healthy and productive ways. It will come. Keep studying SPD, read, read, read as much as you can get your hands on (my suggested books can be found at-- at my bookstore).

Also, I highly recommend you join the online support group AllAboutKids to connect with over 1,000 other parents finding support, resources, and validation in a warm and encouraging room. Surely they can relate and will have additional suggestions for you.

Now, for MY suggestions? The first thing I would do is get him out of those swimming lessons and, instead, get a referral for acquatic therapy with a PT or OT. This would not only be therapy that could be paid for, since it would be PT/OT for things such as the hypotonia or motor planning, but it would also put him in an increasing self-esteem situation instead of decreasing, and it would be a great place to address further SPD issues. I do not know whether this would be a covered service, I am just suggesting it from a therapeutic standpoint.

Also, I would take the money you spend on piano lessons (and other things) and give that a break by replacing it with Occupational Therapy instead. There are always things we can change or cut back on when we REALLY need the money. I challenge you to look at the emotional costs of not getting therapy vs. the financial cost of getting it. One will outweigh the other, and most times, our kids needs will win. See if you can't prioritize things a little differently for a few months or a year. Little changes can go a LONG way when done consistently. Your son needs you right now... he needs your help, support, and validation. I worry about how he is feeling as he begins to compare himself to his peers.

More from the help line coming in the next comment section...


Oct 10, 2007
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Learning To Swim (continued by help line)
by: Anonymous

Two additional resources that may help you regarding costs... an extensive list of online resources for homeshooling (many free resources!) at SPD Parent SHARE.com and suggestions for financial help regarding therapy and therapy products.

So... can you check into getting him an OT again? Getting another evaluation using the diagnostic codes I linked to? Do you need help finding an OT for SPD? What do you think can be done NOW?

He sounds like he really needs some extra help. Are you ready and willing to provide that for him? I think you are!!

I hope this response is not offensive to you in any way... I know I was blunt. Do you, or anyone else, have a response? Any further suggestions? Any answers to the questions I asked? Any input/comments? Let us know.

I think you are indeed ready for some great advocacy for your son... let's see if we can accomplish that, ok?

Take good care.


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