Wednesday, May 23, 2007

OT Evaluation Meeting Today

A few weeks ago, I made a request in writing for our town's Occupational Therapy Team evaluate Grace formally. She was observed before, but it was quite informal. I pushed the issue and forced them to have the OTT check her out rather than just assume she doesn't need special services based on the short amount of time she was observed. I've blogged about my concerns before here, here, and here, but will indulge in bulleting them here.

My biggest concern is that she has Asperger's Syndrome. If you're not familiar with it, this is a VERY brief synopsis from

Asperger's syndrome
Asperger's syndrome (or disorder) is a
developmental disorder in which people have difficulties understanding how to
interact socially. People with Asperger's syndrome may not recognize verbal and
nonverbal cues or understand normal social rules, such as taking turns talking
or recognizing personal space.

Asperger's syndrome and autism belong to
a class of disorders called pervasive developmental disorders. Asperger's
syndrome shares some similarities with autism. Like those with autism, children
with Asperger's syndrome have abnormal social interactions, facial expressions,
and gestures, and unusually focused interests. Unlike those with autism,
children with Asperger's syndrome usually have normal intelligence and language
development (although the rhythm, pitch, and emphasis are irregular),
age-appropriate self-reliance, and interest in the world around them.

Children with Asperger's syndrome have a better outlook than those with
other developmental disorders. Many lead productive, independent lives in

Asperger's syndrome affects males more than females. Its
cause is unknown, although it tends to run in families, suggesting a possible
genetic link.

Author Kerry V. Cooke
Author Amy Fackler, MA
Editor Kathleen M. Ariss, MS
Primary Medical Reviewer Patrice Burgess,
MD - Family Medicine

Specifically with Grace, this is what we've noticed:

  • Limited social interaction.
  • Repetetive routines and rituals.
  • Being very much in her own little world.
  • Retetetive with words and actions.
  • Inappropriate excessive responses for given situations.
  • Heavy attachment to loveys.
  • Very single-minded.
  • Has trouble transitioning between different activities and situations.
  • Can be very clumsy.
  • Avoids eye contact.
  • Flat affect, difficult to read emotions on her face, and reading if she understood what she has been taught or shown, or if she even heard what was said.
  • Rarely initiates her own spontaneous conversations.
  • Is regularly unresponsive to direct questions and requests at the time the request is made, and tunes people out.
  • Tantrums at inappropriate times, and are VERY INTENSE.
  • Has trouble letting a negative, but mild, situation go, yet at other times, lets something traumatic go very easily.
  • Doesn't usually participate directly in group activities, but remains on the outer edge. If she 'jumps into the middle' of the social event, it's not for long and she jumps back out, retreating from social contact with peers.
  • Speaks thoughts randomly, and to herself, which makes it hard to determine when she intends someone else to hear what she's saying and respond back to her.
  • Very much enjoys playing alone, and doesn't seem bothered if 'no one' wants to play with her.
  • Seems to relate better to smaller, younger children such as her 2 yr old sister. Will often prefer toddler activities to those engaged in by children her own age and slightly older.
  • Regression of speech, although she has a firm grasp on understanding language, she doesn't always speak appropriately for her age. Her pronunciation is appropriate, and her use of the words is appropriate, but she often will use baby talk even though we've never encouraged it. She also most often will use single-word responses when a sentence would be more appropriate. Her use of complete sentences is very thought out, with a lot of intent behind them when she does use complete sentences.

So this is what's been weighing heavily on my mind. And this is what I needed the OTT to look at. I've been looking at several possible and hopeful solutions, including taking her off of dairy products. Over the past couple months, I've suspected that maybe it was a lactose intolerance. I'm hitting my head against a wall with her pediatrician on this, because while he agrees that some of her symptoms can be due to lactose intolerance and discomfort and pain from it, he doesn't think that Asperger's or any other autism or behavioral issue can be caused from diet allergies and intolerances. I know better than that.

So a month or so ago, I officially took her off of lactose, and have been replacing cheese and milk with lactose free products, or in the case of her beloved American cheese, Kraft (it has an added enzyme to aid digestion). After several days being off of dairy, probably about a week (which is how long it takes dairy to leave the body) she had a few bites of pizza with real cheese and couldn't finish the pizza. She complained of stomach pain and then had diarrhea. She now will not eat cheese or drink milk unless it's been deemed "special" because she knows it will hurt her insides and make her have diarrhea. Since I've taken her off of dairy, she's showing improvement in concentration and her tantrums are much less frequent, although when she does have a tantrum it's still very intense and sometimes violent. She's having less toilet accidents during the day and at night. Like, one a month now instead of every day.

OK, so she was observed by the early learning center's social worker, occupational therapist, school psychologist, and the head of the special ed team there. They all noticed the same things I've been concerned about, which, as a mother, tells me that my instincts with her are right on target.

Next step? Keep working with her as we have been, keep her in preschool next year as planned, and do another formal OT evaluation with the new school year in September. At that point, they'll also do the formal written evaluation where they test her. Our biggest concerns are her social delays and her speech concerns. We'll better be able to say officially if it's Asperger's or not when we go ahead with more evaluations.

So I feel good about moving forward and knowing that I'm not just being Crazy Mom Who Exaggerates Her Child's Difficulties, but I'm also a bit sad to have that confirmation because it does mean she needs some special attention.

1 comment:

Kristin said...

I didn't know you were dealing with this, Jessica. The dairy connection is so interesting, I have heard it before with autism.

I hope you'll get some answers for Gracie soon.