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Kudos to you for getting your daughter OT, PT, Speech Therapy, and educational help over the years. I'm sure this has make a big impact of her level of functioning. It sounds as though PT has made the most impact and specifically addressed some of the core issues-- balance, strength, proprioception, etc.
As far as speech goes? 15 minutes every week??!! Personally, I don't understand, given her diagnoses, how this could possibly be enough! What can a therapist accomplish in 15 minutes? I understand this is in addition to the therapy every other week at The Children's Hospital... but this surely doesn't seem to have been enough. I would definitely push for more therapy-- on a weekly basis. Perhaps this will come at your IEP meeting? I do hope so!
Now, as for her OT therapy? I am quite concerned, particularly regarding the therapies that appear to have NOT been done to address the underlying sensory processing issues. First, the once every other week, given her many issues, is just not enough. Not only that, but it does not appear, from what you have told me, that the OT who treated her was certified or experienced (to the extent she should have been) in sensory integration/sensory processing theories and treatment. And, by what you said, it sounds as though your daughter has been discharged from OT?? Perhaps she made some progress in some areas, but if the underlying processing and integration issues were not treated and addressed, she will continue to have difficulties. So I highly recommend your daughter is working with an experienced SPD, or SIPT certified, therapist. To find one, please read How To Find An Occupational Therapist For SPD. Also, I highly recommend you read Sensory Integrative OT... What You Need To Know for a deeper understanding about the type of therapist you want and what you can/should expect from therapy.
Until your daughter receives OT from a sensory integration certified/experienced OT at a greater frequency and a sensory diet that can be done at home between therapy sessions, her sensory seeking behaviors will continue to interfere with daily functioning and her friendships. With that information, I know you WILL find the therapies you need! Obviously, the current OT is not giving you, or your daughter, what she needs; as is obvious from your statement "I have asked the OT how to give her what she is seeking but have been unsuccessful." THIS is unacceptable, if that is exactly how it happened.
Regarding your question about the joint compressions... "How can I do this if she wants to go outside and play with no notice?" Here's the thing... If you get an OT experienced or certified in sensory integration theories and treatment, you will learn a few things:
1. Following a sensory diet every day will keep her more regulated throughout the day.
2. These joint compressions you talk about work great for sensory seeking behaviors and self-regulation when done VERY consistently and in addition to the Wilbarger Brushing Protocol (MUST be taught to you by an OT; do not do the brushing on your own.... the joint compressions are ok to do though).
3. That IF she is following a sensory diet every day, throughout the day, the big body movements she engages in outside will, in themselves, be therapeutic and organizing.
4. That you can teach her to do some quick joint compressions herself (push down on the top of her head, on her shoulders, do wall or chair push ups, etc.) BEFORE she plays with her friends or when she is feeling out of control (or YOU notice she is out of control).
5. For now, you will have to help her play with her friends and get the input she needs, also monitoring her seeking behaviors she uses ON her friends... she can't help it (you know that) and you will have to help her until she gets the therapies she needs.
Re-direct her. Help her notice when she is being too rough. Monitor her while she is playing with her peers. Have HER explain she can't feel things the way her friend does and sometimes she gets rough or will hug too hard. Have her ask her friends to let her know when that happens. Talk to her friends and their parents about her difficulties, that she is getting therapy to help her, that you will monitor all play, and that she wants her friends to let her know when she is too rough or too intrusive. Some kind of agreements with them and their parents? You know? Is there another sensory seeker friend? That would be better than a hypersensitive child.
Also, plan very ACTIVE play dates, so she is getting PLENTY of input during that time with her friend. And give her the heavy input she needs before playing. To learn more about activities you can do with her during or before getting together with her friends, go to Heavy Work Activities.
But, know it WILL get better through therapy.
I am hopeful that you will receive help through an IEP and that with that, your daughter will have access to the sensory room at school. I am excited that she is even at a school that has a sensory room! That is rare and a wonderful advantage you have of being at that particular school! Even if she does receive services through the school I would also encourage private OT and/or speech therapy with a SIPT certified OT and an SLP with similar experience to really address the underlying processing issues for a few months.
As for cranial sacral therapy? I do not know enough about it in relation to SPD. I know some do it and had success, but I can't really say anything from any research and/or personal experience. Anyone reading this have any experience with SPD and cranial sacral therapy? We would LOVE to know!! (You can let us know in the comments box on the page the first part of the answer is on.)
Good luck at the IEP meeting and finding the therapies your daughter needs. Any response or input? You can submit it below in the comments box. Thanks for all you are doing for your daughter and for reaching out for help!
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