Is Therapy Working??
I am a mom of a wonderful 5 year old girl. For the last couple of months we have been working with an OT. I have paid well over $1000 out of my own pocket because our insurance does not cover sensory problems. It seems everything I have been doing (the brushing, the exercises, and music therapy) are not helping. In fact the problem seems to be escalating. I don't know what else to do to make my little girl happy.
There is not a stitch of clothing that she will wear willingly (underwear, socks, shoes, pants and shirts). I can literally see her crawl out of her skin when she has to put clothes on. It did not become a problem until she went to preschool (I guess cuz she was just naked all the time at home). She was colicky as a baby, has always liked to be naked. She is also very sensative with sound and smell. If she likes a smell it can put her into heaven. But if she doesn't like it, it can make everyone miserable. She also has some coordination problems. A family member once said "Wow she just ran through the whole back yard without falling!"
She does not have problems at school, which I am very happy about. She holds it together but then lets it loose at home. We are a family in crisis. I have researched on the internet and I just am overwelmed with what to do. Financially it is a strain to keep going to the OT. Should I just keep going? What do I do? The SPD Help Line Answers...
I understand your worry and frustration, and have been there, too. By the description of the behaviors you mentioned, I can see your daughter has processing deficits in several areas, at least. You have your hands, full, don't you dear? Now let's get to the nuts and bolts of the reality of living with SPD.
The truth? Her tactile defensiveness, the over sensitivity to sounds and smells, her motor planning, balance and sequencing will probably not get better without treatment. These issues will continue and increasingly negatively impact her ability to play, learn and have healthy relationships all the days of her life, unless treated. She may learn ways to hide some issues. She may learn to compensate for things she cannot do. She may give up on goals, careers and friendships because it is just too hard. If she does not learn healthy ways to make herself feel better, she may turn to risky, dangerous, or unhealthy means. Two months of therapy is just the beginning. She is just getting started. Yes, it is not uncommon that you will see an increase of undesirable behaviors in the beginning few weeks or couple months of therapy as you are stimulating areas that are not processing efficiently.
The good news? With your help, she can overcome many of these behaviors and challenges, and lead a very happy life full of endless possibilities. If your insurance is not covering "sensory issues" try taking my article Most Commonly Reimbursed Insurance Codes
to your OT and ask her to resubmit to your insurance, using the codes for the symptoms she is exhibiting, instead of the general term related to sensory processing. If the OT can be specific regarding the codes, using the specific symptoms, then there is a much better chance the therapy will be covered. Talk to your therapist! They should be
willing and able to work with you on this.
The most important thing you can do is to learn all you can about how to help your daughter at home and literally dive into therapy. No matter if you have 1 hour or 3 hours of OT a week, it is still not enough unless you also develop a sensory diet in your home environment and life on a daily basis. The OT's role is to evaluate and discover the areas of need. Get your daughter working and showing improvement with an appropriate goals and treatment plan, then teach the parent how to continue therapy at home. YOU are the person who will have the biggest impact on her progress. You are the person who can help her the most, you need to understand that. OT therapy for Sensory Processing Disorder as severe as your daughter's will not be a quick fix, but should be steady progress, just the same. Might I suggest that you join one of our SHARE online support groups at SPD Parent SHARE Host Groups
? In every group, if you read through the files and ask questions, you will find many helpful suggestions and a warm atmosphere for support.
The brushing... it is important to be regular and consistent, a minimum 3 to 5 times per day, if you want to see improvement in her reaction to clothing. And you will! Also help her in the meantime by providing the softest, most comfortable clothes, socks with no seams, tagless shirts if you can. Ask your OT about adding a massager to her sensory diet to add additional tactile stimulation.
The Listening Therapy. This I have some concerns about, because of your description of her recent behaviors. The Listening Therapy is a wonderful program! Done in conjunction with OT therapy can bring about many positive changes in most children. However, there are situations where the standard protocol of two 30 minute sessions per day can be too much in the overly sensitive child. You should have been advised of possible adverse reactions, shown in their increased agitation, low frustration tolerance, crying and possible increase in sensitivities. Generally these symptoms subside in a matter of two to three days. But if you feel she is not settling down, is too emotional or even aggressive at home, back off on the time spent listening, or stop altogether until you can speak with her therapist and report these behaviors.
You are looking for extremes in a child who is already extreme, so it isn't always easy to distinguish.
In the book Listening With The Whole Body
there is a daily listening chart for a parent to track listening times and behaviors each day. I would suggest you utilize this simple chart, as it makes it easier to know which CD may not be beneficial for her. Your OT may have this chart in her copy of the book.
I tell you truly, your daughter can and will get better as long as you take it upon yourself to learn all you can about SPD, and become dedicated to helping her every day. It won't always be this hard, or this intensive. You will learn how to help her in hundreds of ways and it all adds up. And in a couple years? You may be in here helping other new parents find their way as you celebrate your own daughter's success! Good luck to you, and please don't give up. *smile*
Administrator, SPD International