Monday, May 18, 2009

The F-Word Can Help Our Kids' SPD- Part 2 of Lucy Miller Interview

No, this does not mean we should use the F-word to insurance companies, even if we really really want to.

We received a lot of positive feedback from the last interview with Dr. Lucy Miller of the SPD Foundation. Last week, ADDitude Magazine's Parent Blogger, Kay Marner wrote about our recent article in her blog since so many children with ADHD have Sensory Processing Disorder as well.

When I think about my kids' sensory needs which is pretty much every day, I frequently go back to my conversation with Dr. Miller because she gave me such good advice about how to find a great occupational therapist (OT) but our conversation naturally flowed into something just as or even more important: what we can do as parents to help our child overcome their sensory issues.

I have talked to many parents about what they are required to do at home for any kind of therapy including OT, speech and physical therapy. Many feel that what therapists ask them to do at home is unrealistic, mostly because they have no time. I once met a parent who had three children, two of them living with autism. She said, "I'm not a therapist. I can't do what they ask me to do." I understand how she feels. First, I frequently feel overwhelmed by the kids' needs on an almost daily basis. Secondly, our children can pull our heartstrings or frustrate us with much more ease than they can with their therapists. So if Logan doesn't want to be brushed (Wilbarger protocol) or if Spencer doesn't want his teeth brushed, I may just rush through it or just not do it at all. I tell myself that I'm tired and I just don't need this today.

However, what do I need is good advice and information. With this, I can make my own decision as to how much I can comply with the "homework" that the therapists give me. There may be days or months that I have the spirit, patience, and energy to do all that they tell me to do. Thus, I need to surround myself with great advisers who have to push me a little so that my kids can receive more benefit beyond the treatment sessions.

Dr. Miller gave me three great tips, some stunning, on what parents can do to ensure productivity with therapy:

1. Parents must spend the same amount of time playing with their children as their children receive in occupational therapy. Huh? She let me digest that for a moment because she knew she was making my head spin. What she meant was if a child gets 3 thirty-minute sessions per week then the parent should, at the least, spend the same amount of time playing with their child. "Play with your child with the goal of increasing your child's joy in being with you because it will help them with their biggest challenge and that is social participation," Dr. Miller said. "If you can get your child playing, you are teaching them social/emotional skills. I actually prescribe parents to spend time playing with their kids." I know it sounds really sad but after a long day of carting them around to school and therapy clinics, or the park where you are always a bit worried that they'll get hurt or get into a scuffle, or the big challenge: food shopping, I must admit, I don't want to play with anyone. However, if I remember my goals then I must change how I do things and make this part of my daily schedule somehow. After all, this is why I am not pursuing my public relations career, right?

2. "Get your child moving," Dr. Miller also stressed. It doesn't matter if they are under-responsive or over-responsive to sensory input. Heavy work is a great activity for them. For example, an activity such as swimming can be very helpful for kids with sensory issues and results are maximized when foam boards are placed underneath the child to provide more resistance. I am now making Logan carry one or some of my shopping bags home or to the car and also try to carry the basket (pushing shopping carts causes trouble) around while we shop which is even harder. I know people are looking at me. Some say nice words and some look at me like I'm treating him like a slave. Whatever! What is most important is that because he has a job to do, I am never saying, "Logan don't touch that," "Logan don't go there," "Logan where are you?????????" Shopping is MUCH easier now.

3. What can a parent do if the number of OT sessions provided by the school or insurance companies are not enough? Dr. Miller says, "Whether it's insurance or an IEP, use the F-word and not the S-word." Huh? I was already focused on her every word and was she now cussing? No. The F-word is "function" and the S-word is "sensory." She sent me into a new state of awareness. The school system as well as insurance companies both do not believe they are obligated to treat sensory processing disorder. However, if you can prove that your child has limited function, then he or she should then qualify to receive occupational therapy and if the therapist has good SPD treatment skills then they will know what to do accordingly.

What a shocker. Here was this internationally-recognized SPD researcher telling me not to refer to my child's SPD but if you think about it, it's not hard to understand. With many of our children, sensory processing disorder is very real but we have to fight extra hard for treatment because it is not yet recognized as a legitimate disorder. Doesn't that make you mad? It is not even included in the American Psychiatric Association's Diagnostic and Statistics Manual (DSM-IV) and hence SPD does not receive proper recognition and at times, this lack of knowledge can cause misdiagnosis. And more importantly, insurance companies do not see the need to pay for SPD treatment. The next manual is due in 2012 and the foundation has an initiative that includes an online petition. Additionally, parents can support the funding of more research to further the cause.

I have already become more of a believer and I'm trying hard to listen to her advice. Last weekend, I took Spencer, hater of sand and grass to the local sandbox and he kept climbing on top of me as if there were lives snakes on the ground. We sat down and tried to play and I gently ignored his protests. Twenty minutes later, we were doing the Yo Gabba Gabba March song while jumping barefoot in the sand. Even more surprising, he played ring-around-the-rosie with me and another boy whose hand was covered in wet sand! I was exhausted after a while but the kids kept running after me. More! More! More!

But I stopped. I had to breathe and think about what I had just done:

1. Played with my child as Dr. Miller prescribed- check
2. Did therapy "homework" which is to keep exposing him to sand- check

The winning results:
1. Spencer's feet touched the sand for a day without words like "AHHH" or "OUCHIE" or real-live sobbing.
2. Spencer interactively played with another child other than his brother for the first time.

Picture above: When these two look at a pile of fresh laundry they act like they discovered a room full of cotton candy. They jump right in and soak up the good sensory input.


Anonymous said...

What great advice! You know, since my kids were little (now DS is 16 and DD is 13) they have ALWAYS enjoyed having a purposeful mission! (Recognize that from Kirk Martin!) Shopping was a nightmare until I figured this out! All the advice your Dr. has given is spot on and thanks for sharing it!



Kay Marner said...

When my daughter Natalie was in O.T. we also often had "homework". At the time, we were also receiving in-home services for skillbuilding--"family and community supports". I always argued that having the in-home worker do the O.T. homework with Natalie, instead of me doing it with her, would be a valuable use of their time. Natalie will listen to teachers, therapists, etc. more than she will me, for one thing. I think this is a model of service we should promote--an hour with the O.T., a couple hours with a layperson who isn't mom. If I can learn to do the homework, in-home workers who are not OT's can too! The problem goes back to having SPD recognized as a disorder so that services will be paid for.

In spite of wanting help with the homework, I do play with Natalie a lot--and we do a lot of sensory stuff together. I was pushing her in a swing at the park a few days ago, and making up a song, "Natalie is my sensory girl. Natalie loves swinging, jumping on the trampoline, and playing with goop." (cornstarch and water mixture)

Then Natalie added, "And playing in the sandbox and swimming."

She gets it!

Melanie said...

Kiddo gets 1 hour of OT every day ( 5 x 60) plus 2 x 45 of Sensory gym. I do try to play with him that much but I don't always have the energy, because errands and shopping with him exhaust me! (do playdates count, since I need to manage him during the date?). When do i get to wash my hair?