My story of hope for those with SPD

by Rebecca
(Newcastle, NSW, Australia)

I was a lucky one. Though treatment was uncommon in the early 90s, my mother heard an OT speak and identified that therapy may help me. Though I had two years of therapy (with exercises for 1 hour everyday) I never knew a name for what I have nor met anyone else with such problems. I have a Vestibular Dysfunction and Proprioceptive Dysfunction. Aside from the effects described on this website of these, I also had great trouble sequencing. I remember the OT saying that due to the lack of movement in my inner ear (Vestibular Dysfunction)my brain was lacking stimulation. Though a smart kid, I was at a point in school where I felt like I might have to drop out and I was only in year 4!

A huge turning point for me was my mother massaging me firmly with moisturizer, sago balls, and a face cloth all over my body each day. I would first lie on my back (in just my undies), then on my front while my mother ran it over me. I remember the tingling feeling and miraculously my spelling turned around in one week!
Other activities included cross body coordination activities, learning to catch with coosh balls (have rubber threads on them to stimulate grasp), being spun in each direction 100 times (it was impossible to get dizzy), rolling, compression on my joints to stimulate them, and learning how to handle "tools" (utensils, pencils)etc.

Books I have read have said that if you are not treated by a certain age then there is no hope for you. I was passed this age when I was diagnosed, then was on a one year waiting list yet now have limited problems after getting help (and after hours and hours of a diligent mother who had a lot of other things to do with 4 other kids). Yes, I still crave to be squashed, find myself holding my seatbelt SUPER tight,get really frustrated to be treated as a "girl" when all I want to do is do the "fun" things with the boys - adventure, fast, hard, rough activities, and hate light touch. I also have muscular pain from using mainly gross muscles rather than minor ones.

I have learned to copy others in how they move their body and that helps. Elbows in! -The best key to less pain I have learned so far!
The pain of this experience is still real but I cope pretty well and am still learning how to do some things. I want to encourage you you CAN improve. I also wanted to really honor parents who give of their time and money to improve the quality of a child's life. I couldn't do so much of what I love today if it wasn't for my dedicated mother. To these parents I applaud you and thank you for you giving of yourselves. I can't thank you enough.

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Dec 14, 2010
vestibular system & propreoseptive input
by: ISGH

Thank you for sharing your experience. I am a mom to a gifted 5 year old who we have recently come to know has struggled with SDP in the same areas that you described. We moved to a new home in March of this year and by June we were asked to make a transition plan for his education that did not include their facility. I knew that there was something that we were missing. With much effort and research on my part I came to understand that he needed a detailed occupational therapy eval. We had that done two weeks ago and thankfully I go this Thursday for our assessment review so that we can plan for our son....I am certainly hopeful. I have sacrificed my career and now homeschool my enjoyable challenge daily! I feel blessed and encouraged by what you have shared. I will try some of your pointers about massage.....

Sep 15, 2009
Response to comments
by: Rebecca

Thanks for the comments. It?s a joy to know I have been able to encourage others.

To Jul 19 writer - All the best Rae as you do therapy with your daughter. What an amazing age to be able to help her! She will probably never know how in debt she is to you as a parent but what a difference I believe you will be able to sow into her life! May God bless you as a parent as you give so much of time, energy and finances for her well-being. May God also give wisdom to you and your daughter?s therapist so that you both know what therapy is right for your precious girl.

To Sep 13 writer ? At the age of 5 your daughter will know the hard work (as well has the fun) of what you are sowing into her life. Definitely not too late. I was 9! All the best to you and your daughter as you work together to see her reach all that she can be. My prayer is that she finds a lot of fun as she does her therapy. My sisters often wanted to join in with mine! Bless you.

Sep 13, 2009
Thank you
by: Anonymous

My daughter has just been diagnosed at age 5, and I have been beating myself up for not having found this out sooner. Frustrated that it might be too late to help her. But, reading this has made me feel so much better. Thank you and I hope that things continue to get better for you.

Jul 19, 2009
thank you

Thank you so much for sharing your story. My daughter is 21mths old and is being treated for SPD currently and your story is just another reason for me to quickly answer myself when I ask Is this therapy really worth it? Thank you

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