Are We Doing Enough?

by Lauri
(Olean, NY)

My daughter was diagnosed with SPD at the age of 5. She is tactile, oral, and auditory defensive. She craves vestibular input and has low muscle tone. She is now 10 and is trying very hard to fit in and look "normal". She is very distractible in school and at home. She has a really hard time getting to sleep and waking up. She has never gotten formal OT (I am a pediatric PT and provide her with therapy activities at home). We do the Wilbarger protocol with her, but have to argue with her to do the brushing and heavy work activities. We see a huge difference when she sticks with her routine. She brushes herself, but only when we make her. We try to do this 4 times per day, but it is difficult to fit it in and get her to do it.

How can I get her to stick to her routine? Should we be doing more? We are in the process of setting up a sensory room in our house so hopefully this will help.

The SPD Help Line Answers...

Hi Lauri,

If your daughter was diagnosed at 5 and you have been doing sensory integrative therapy with her for 5 years, I would expect her to be further along than what you indicate. This, in itself, tells me she does indeed need more, or different treatment. I am concerned that she has never had formal OT therapy. I know that you, being a Physical Therapist, certainly have much of the knowledge necessary to treat your daughter at home. However, I feel it might be best to get her into some formal sensory integrative OT, in addition to what you are currently doing.

Advantages of formal sensory integration therapy with an OT?

1. They specialize in sensory integration/sensory processing theories and treatment. They will have had 150+ hours of post graduate training/courses that will bring the specific knowledge and clinical thinking/observational skills your daughter needs.

2. It will take the pressure off you as the Mom AND therapist. Personally, I have found my daughter is/was more willing to follow through with therapies if a counselor or OT required it, versus "Mom". Do you know what I mean? Maybe she would follow through more and be more accountable if her therapist gives her the homework? Also, she may not be getting as much from the therapies at this point due to her changing body and neurological systems, inconsistency, etc., so she loses her motivation as she doesn't see the benefit??

3. You will have access to, and be "trained in", a larger variety of companion programs that may help your daughter more specifically. Once the SI certified OT decides which programs (i.e., The Alert Program, Therapeutic Listening, Astronaut Training, Brain Gym, Interactive Metronome, etc.) can/will help your daughter, then she can monitor your daughter's reactions and progress, also teaching you what to follow through with at home.

What a gift you are giving her by setting up a sensory room at home! Fantastic. I am sure that will help!

I am excited that you have been doing the therapy with her all this time... good for you! That has surely been a lot of work and committment. And your daughter, I imagine, has come a long way so far. Let's see though if we can't get her to the next level, ok? One thing you may want to look at and discuss with an OT is the Wilbarger Brushing Protocol... IF you followed the exact protocol, and wer absolutely consistent with it in both frequency and timing, it should have made a bigger impact and I can't imagine she would still be needing it 4x/day after 5 years time!? So, I would really like you to check that one out with an OT (trained in the Brushing Protocol). It wouldn't normally be necessary for 5 years at such a high frequency. I do wonder then, how consistently it was done and how you were taught to do it?? I wonder if you didn't receive some misinformation?

If you need help finding a SIPT certified OT, go to's SIPT certified OT's database. To find out more aobut SIPT certified OT's, treatment, and therapy, read my latest newsletter... Are You Ready For OT?

I hope you DO get her into some sensory integrative OT and find some additional programs that will help her. This advice, of course, is just my own personal, humble opinion. :0)

Let me know if there is anything else I can do for you, ok?

Agree? Disagree? Anyone?

Take good care.

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Nov 09, 2007
re: doing enough
by: Lauri

Hi Michele, one of the reasons we didn't get her formal OT is that the closest SI certified OT is 1 1/2 hours away. We did take her for the SIPT eval and used that information to get her school to recognize that the problems they are seeing are not just behavioral (What a nightmare the first 4 years of school were because nobody would listen to us). The school has agreed to provide her with an OT consult 2x/month. The OT is a friend of mine and knows everything we have gone though with her, which has been very helpful.

We haven't done the Wilbarger protocol with her constantly for the last 5 years. We have done it on and off for the last 5 years. After she had the SIPT done last July the OT recommended 4x/day. We did that for most of last school year then backed off to 2x/day. We do still try occasionally to do 4x/day depending on her needs, but most of the time she only gets 2x/day.

We have pretty much gotten her tactile and sleep issues under control (except for getting her to get up and moving in the morning - it takes her over an hour to get dressed and eat her breakfast which usually makes us late for school). My main concern now is her ability to pay attention in school and sit/focus on her homework for any length of time. It is affecting her grades and I am getting very concerned.

I have been looking into the Alert Program because I think it would benefit her. I am also interested in Therapeutic Listening, but need to find out more. I think there is a therapist about 1/2 hour away.


Michele Mitchell responds...

OK, that makes perfect sense now, phew! So, it sounds like, although it has been a struggle, you have done very well! Oh, convincing the school that her SPD was affecting her there and getting that consult... wow, that MUST have been hard! Great job sticking it out. What a lucky girl your daughter is to have you as her mom. :0)

I think the Alert Program and The Therapeutic Listening will definitely help. I encourage you to keep pursuing that. About the focusing? Has she been assessed for any visual processing issues? Just curious. Can she sit on an exercise ball chair? Or a Disc 'o Sit cushion? Would she be "embarrassed" about that? Would it be practical? Do you think it might help? Is her distraction based on a need to move, visual or auditory distractions? Can you tell?

One last thing... did you read my newsletter about helping kids at school? This might give you some additional ideas? Using SI Theory To Solve Problems At School.

Give us an update when you can.

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