Saturday, November 24, 2012

Getting a diagnosis of Sensory Processing Disorder

This is part 3 in a series I'm writing about our journey with Sensory Processing Disorder. You can read Part 1 and Part 2, here.

***This post was actually written last January. I've had it in draft and am just now getting around to posting it!***

As I discussed in my last post in this series, we've had issues navigating the bumpy road to an SPD diagnosis for Taylor. The primary reason is that Sensory Processing Disorder is not currently a recognized diagnosis, so health insurance companies will not cover occupational therapy (OT) for sensory issues. In many cases, SPD is accompanied by other diagnoses or delays such as autism or delay in motor skills or other developmental delays. In Taylor's case, she has met every milestone on target or early, she excels in every area at school, she is exceptionally well coordinated (in most areas) and very athletic. She is socially appropriate (in other words, she's not disruptive in her classroom, able to make eye contact, communicates appropriately and even advanced for her age) and displays a sense of humor and problem solving skills and social skills that are beyond her years.

So, while we're certainly thankful for all of these strengths, the result is that for her, SPD is a stand-alone diagnosis. When I compiled a list of Taylor's behaviors, and provided the completed SPD checklist from The Out of Sync Child to our pediatrician, I asked for a referral for an OT eval and we were seen at a local PT clinic. I live in an area where geriatrics is the main focus of health care and services, due to our population. While the OT we saw validated our concerns and agrees Taylor had many behaviors consistent with SPD, she recognized her own limitations in knowledge about SPD and referred us to another clinic for on-going OT. The referral for on-going OT was denied by our health insurance, going back to the reason that SPD is not recognized in the DSM.

I also think it's worth noting here, that the OT that completed the initial eval started going down the road of ADHD. SPD is often misdiagnosed as ADHD. Yes, Taylor is hyperactive (although I *really* hate that word!), and yes, Taylor has trouble focusing, BUT...her hyperactivity is related to her *need* for sensory input. She moves constantly as an attempt to fulfill her need for sensory stimulation. And, she can focus just fine as long as she's moving or chewing on something. In fact, she has almost no problems at school. She's able to get input in ways that are not disruptive to her class, her teachers adore her, and she's above grade level in every area. Her teachers completely scoffed at the idea that it was suggested she has ADHD.

Knowing that we desperately needed more guidance in managing Taylor's behaviors, we decided to pay out of pocket for OT at the recommended clinic. The OT we saw, came highly recommended by a dear friend who has a son with autism. During our first meeting with our OT, it became very clear how experienced and knowledgeable she is. I felt hopeful and relieved, but also a little sad, because it made all of this more real and valid. Mostly, though, I was grateful we found someone who was finally going to help us.

Prior to our appointment, I wrote a detailed report of Taylor's relevant medical history (food allergies, asthma, multiple episodes of pneumonia, chronic ear infections as an infant, the fact that she was born with the cord around her neck - which is listed as one of the factors with kids with SPD). I also wrote about our biggest behavioral challenges, and what we've put in place at home.

Our OT began our session by giving us a tour of the clinic. We ended in the "imagination room" where Taylor played with trains and cars while hubby and I talked with the OT. She began by going through a sensory profile with us. This was a multiple page scale that asked questions about how Taylor responds in certain situations. By the time we reached the 4th question, we were having a vivid dialog about our challenges and our OT had realized that we've already put a lot of things in place to help Taylor cope. For example, one of the questions was related to if Taylor is able to behave appropriately while eating out. I explained she is, as long as I bring a bag full of appropriate toys to occupy her. Left to her own devices, she'll crawl under the table, talk excessively and interrupt, and not have the patience to sit at the table. And, let's not forget about the fact that she almost never actually eats the food she is served. The food either tastes "yucky", doesn't look "good", is just plain "gross", isn't the same as the same item that I make at home or that she's served at school. 

During our discussion, we were very aware that Taylor was listening to every word that was said. I'll be completely and wholeheartedly honest, here, in hopes to validate what you may be feeling reading this, if you have a child who regularly challenges you beyond what you feel you can manage. A lot of our conversation revolved around my husband feeling like a referee between Taylor and I. While John and I have a very united front in our parenting, Taylor responds much better to his direction and discipline than she does to me.   Through this very candid discussion (while attempting to be discreet so as to not offend Taylor or impact her self-esteem), it became obvious to our OT how exhausting and unpleasant it was for me to be alone with Taylor. Everything was a battle. Our OT said the words for me in a completely empathetic and validating way, that I didn't "like" my child. This brought tears to my eyes. Tears because, she was absolutely right. Tears because how awful does that sound? Tears because I remember when she was about a yr old, someone commenting on how obvious it was that I really "liked" my kid and what a great relationship we had. I cried because we had lost that. I cried because despite all of my education and experience as a social worker, I felt totally lost at how to parent my own child. I believe that God doesn't give us anymore than we can handle, but I was really feeling like God had overestimated my abilities and strength. 

During that session, our OT gave us a lot of hope. She validated my parenting style, but also pointed to its weaknesses when it comes to raising a very strong-willed child with sensory issues. There were so many light bulb moments during that hour, I can't even begin to share it all. But I want you to know, that now, just a few months later, I can say that I like my child again, and I enjoy spending time with her. I no longer dread the weekends. Yes, there are still a lot of days that are exhausting, and she still has sensory struggles, but I'm able to control my reactions to her behavior and be more empathetic and help her through these challenges. 

Journey toward a diagnosis - Sensory Processing Disorder.

*This is another entry into our Journey with Sensory Processing Disorder. I actually wrote this after Taylor's initial consult with a pediatric neurologist in May 7th, 2012. I'm just getting around to posting it now.*

Today,  we took another step in our journey toward a diagnosis of Sensory Processing Disorder. We've had two sessions with our OT and she's convinced based on my report of Taylor's behaviors and observing Taylor in our home for two hours in which Taylor showed her true sensational colors, that Taylor does, indeed, have Sensory Processing Disorder. Specifically, she believes Taylor has Sensory Modulation disorder with primarily sensory seeking behaviors. As I mentioned before, SPD is a neurological disorder. Back when we were first faced with road blocks of getting OT covered by our insurance, I discovered it would be helpful for us to see a neurologist and get an actual diagnosis of a neurological disorder. Currently, SPD would fall under neurological disorder NOS (not otherwise specified) since SPD is not in the current DSM.  So, today we saw a pediatric neurologist through Loma Linda Children's hospital.

In preparing for Taylor's appointments, I learned long ago, that our appts are the most productive, when I write a summary of problems I'm seeing and questions I have, along with my goals for the appt. We had Taylor's birthday party yesterday and planning for that, combined with some other unexpected stress, left me with little time to devote to prepare a written summary for today's appointment. So today, I wasn't as prepared as I usually am. The doc began by questioning the symptoms I reported verbally. He questioned how this is different than any other child. Of course, Taylor wasn't helping our case given she was sitting contently silent, and fairly still, beside me. Of course she had a very mellow day because she got lots of stimulation yesterday at her party. Suddenly I felt defensive, but I also realized I wasn't reporting my concerns well enough to paint a true picture of my daughter and our daily struggles.

I handed the very nice doctor the report I had written a few months ago for our OT. Once he looked over that list of 12 bullet points of persistent problematic behaviors which are classic SPD behaviors, as well as my completed checklist for the Out Of Sync Child, he stated a full neurological assessment is warranted so we truly know what we're dealing with and how best to help her. The neurologist agrees Taylor has "issues" and wants her seen in his pediatric neurological assessment program. Through this program, she will receive approx 26hrs of testing and observation/evaluation. This testing will be broken into 3-4 hour sessions over several months. At the end of it all, we will have a better idea of Taylor's strengths, and areas to focus on in treatment.

Ultimately, I'm hoping through this program we will reach a diagnosis and from that work on a treatment program. Most importantly, I want to ensure she gets the right strategies in place so she can continue to succeed in school. She'll be going into 1st grade in public school in the fall. Currently, she's in a private kindergarten class in a preschool where she's been since the age of 2. There are maybe 100 kids total in the school. There are 15 students in her class, 1 teacher and 1 full-time teacher's aid. When she heads to public school, she'll be in a class of 30+ students with one teacher, and she'll be expected to sit and focus for 6hrs as opposed to the current 3 hrs. Her recess time will be shorter and she won't be able to have the level of intense activity on the playground that gets currently. At her current school, she often hangs upside down on the monkey bars for long periods of time. I don't understand the science behind it, but I know that hanging upside down helps people with SPD "organize" their nervous system. According to our OT, public schools in our area don't allow kids to hang upside down on the monkey bars. Yep. Seriously. I'm sure she'll figure out other ways to get the input she needs, but that's just one of the many hurdles I see us needing to jump as she transitions to public school.

The neurologist made it clear that he doesn't feel she has "severe" SPD. I agree. I also feel like we're miles ahead on our journey since the first time we met our OT. Heck, a year ago, I didn't even realize the extent of Taylor's sensory seeking behaviors. They were pretty well managed because she was getting enough appropriate input at school. It wasn't until she moved to the kindergarten classroom last June that I realized what a sensational kid she is and how critical it is that she receive appropriate stimulation in the appropriate amount.

So, all in all, it was a productive appt.