Saturday, April 4, 2009

Another bump in the road

I am sorry I've been absent for a while. I was taking time to deal with a new situation that's cropped up. Earlier this week we met with the director at Ainsley's preschool because she wanted to talk with us about some of Ainsley's "areas of development." Dave and I had no idea what this meant and were very apprehensive going into the meeting. It turns out that she thinks Ainsley has exhibited some markers of "sensory issues" (aka a condition called "Sensory Integration Dysfunction") and suggested that we get her evaluated by an occupational therapist and possibly start her in some occupational/physical therapy sessions.

When I describe what she said and her suggestions, it doesn't seem like a big deal at all. But it was a big deal at the time. I was being told that, in some ways, my daughter doesn't act like "normal" children. Then there was the realization that I would have to become well versed in a condition besides food allergies. I had thought my major challenge with Ainsley was her allergies, but I guess my plate wasn't full enough.

Being the proactive mom that I am (after all, I am a veteran food allergy mom, and no one is more proactive than we are), the night after the meeting, I started reading a book loaned to me by the preschool director about Sensory Integration Dysfunction called The Out of Sync Child. The next morning, I started calling the occupational therapists to whom the director had referred me to set up an evaluation. The first place I called was happy to schedule an appointment for a few days from now. The receptionist then nonchalantly informed me that the initial evaluation would cost $750 and that each treatment session (lasting one hour) would cost $140. What she failed to mention was whether insurance usually covered any of this.

When I picked myself off the ground from fainting from the prices, I called the place back and found out that they are a "private pay" clinic - in other words, you pay them in full, they give you the paperwork to file with your insurance company, and you cross your fingers that your insurance company will pay some of it.

Well, my insurance company isn't cool with that. I have a form of insurance that is practically universally accepted among providers who accept insurance, but it isn't a PPO so I can't go out of network, which excludes private-pay places unless I can show that no one else within 75 miles is qualified to perform the services. So my quest began to find a place here that would take my insurance; I guess this is where I should be thankful that I live in a major metropolitan area with some of the best hospitals in the United States. Thankfully, after just a little searching, I found that two major hospitals in the area have very good children's occupational therapy services geared toward sensory issues AND that these programs accept our insurance. But, to schedule an evaluation, I had to first get a referral from our pediatrician. I quickly made an appointment with him and brought Ainsley in. When I told him what the preschool director had said, he looked quite skeptical, but agreed that it wouldn't hurt to get an evaluation and see what comes of it.

So right now I'm in the process of getting the pediatrician's office to get the clinic the information it needs so we can schedule our initial evaluation. Whew ... sort of a busy week for me (on top of an already busy work week).

By this time you might be wondering what Sensory Integration Dysfunction is and why the director thought Ainsley might have a (very mild) form of it. Well, I had no idea until this week, but I quickly found out that basically it's something in the child's brain that inhibits her from processing signals from her senses, including her sense of balance and her sense of her body in relation to the space around her. This can prevent a child from controlling her body in the way she is supposed to.

Some of the markers of this disorder that the director pointed out in Ainsley are her relatively low muscle tone (manifested in her sitting in a "W" position sometimes and sort of having a "wet noodle" body), a lag in her gross and fine motor skills (she has some trouble skipping and climbing, and has difficulty holding a crayon or pencil correctly and cutting with scissors), and sensitivity to sounds and movement (doesn't like loud sounds, really doesn't like spinning in a circular motion).

The director emphasized that Ainsley's issues seem very mild and that they are easily correctable with appropriate play therapy (thankfully, this condition is not treated via medication so we don't have to open that can of worms). But she wanted us to know now because, as with other conditions, the earlier we get her into therapy, the more improvement we're likely to see.

I have come a long way in this past week. I began as really upset and confused, and am now in a place of peace and have realized this really isn't something to stress too much about. Ainsley probably does need the therapy and hopefully it can remedy some of the anxiety she feels when asked to do physical activities (she often refuses to do things like color and draw because she doesn't feel that she can make the picture look good enough). Although I had thought she was just high-strung and sort of unathletic (if you are familiar with the movie Parenthood - one of my all-time favorites - Ainsley is a carbon copy of Steve Martin's oldest child, Kevin), it could just be that she is stressed because she realizes that she can't do some of the physical things her peers can.

One final note: The Out-of-Sync Child said that allergies (environmental and food) are commonly seen in connection with Sensory Integration Dysfunction. So I am left to wonder whether Ainsley's food allergies are related to these sensory issues. I will likely never know the answer, but the director did say that, like food allergies, sensory issues seem to be multiplying these days. Whereas she used to only see one child in hundreds with these issues, she now sees children with these issues in every one of her preschool classes. What I would give to know why that is.


Mamma Sarah said...

Wow, but thank you for the information. May be something I bring up at Alex's next doctor's appointment.

E-Dawg said...

Wow, another thing we have in common. My son also has the same food allergies and sensory issues and low muscle tone! We have him in Early Intervention (he is only 2.5) and he meets with the OT. I am not totally convinced he has SPD, but I really should read The Out of Sync Child. I am shocked to hear of the connection to food allergies. I hope to read more about this journey you are on.

Leigha said...


To be honest, I'm not *completely* convinced Ainsley has SPD either, but I agree with the director that she has low muscle tone and is on the low end of normal for her gross and fine motor skills development so it seems she would benefit from some OT/PT. But as far as the rest -- sensitivity to noises, being tightly wound, etc. -- that really could just be her personality and not signs of a "dysfunction." I am very interested to see what the results of the evaluation are and whether the therapy will affect these other non-physical areas.

Debbie said...

There is such a fine line sometimes in "diagnosing" Sensory Issues. Is is really "SPD" or just "the way my child is"? This is something I asked myself frequently when my daughter was a toddler. The fact that she was the youngest of 4 and the other 3 didn't have these "quirks" is why I became so passionate about learning everything I could about SPD and finding the right help for her.

There are a lot of GREAT books out there. I read the "Out of Sync Child first too" :)

"Raising a Sensory Smart Child" is another great one. I have a bunch of favorites listed on my site if you're looking for more resources.

I look forward to reading more of your posts!


Anonymous said...

How old is your daughter and what type of school is she in? If she's over three, then call your local school district to request and evaluation. It's free and if she qualifies for services, it's free. Why didn't your school director not mention this.

I have a food allergy (All nuts) child, who is 6. She has sensory issues, low tone, speech delays. But wow, OT did amazing things for her, that she doesn't require it anymore.

Good luck with this. Dealing with the ins. cos is never easy. However, you may want to consider a development pediatrician or neurodevelopmental pediatrician. Sometimes their reports carry more weight with insurance companies and that may help with getting some covered services....