Learning To Swim And SPD Related Issues
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...
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)...