Review Mina Avery Conference Ohio 2010

Mina Avery, mother of the 12 year old Rowena, visited the Conference in Ohio.
She wrote a personal report and gave us permission to publish this review on our website.

More on Mina and her daughter:


In the past I have written a structured review of the conferences but…this conference was very different for me. I attended very few sessions (the girls’ needs and my needs seemed to take priority). My husband attended sessions all day both days but still couldn’t attend everything we were interested in.

I will give you a rundown of my experience with some summaries being from my husband’s perspective.

Two components
There are two major components to these conferences, the first of course is the information from the specialists.

The second part is the interaction with other parents. This part is extremely important and sometimes overlooked. Through the parent contact I learned about a patch for ADHD. This is time released and very effective. Dr. T stated very clearly that we should always start all medications at the lowest possible dose and this patch has various levels including very low doses.

I heard a father of Klinefelter’s boy speaking with a researcher. When the researcher said that they have many proven techniques for helping with coping and anxiety, the father asked if the research was syndrome specific because “…any solution that involves them verbalizing won’t work for this population.” That seemed so simple and clearly stated. Every time they come up with a solution that involves an effected area, we need a different option. Anything I do with my daughter must take in to account her slower processing, increased anxiety, sensory sensitivity, etc.

Parental discussion
A number of parents discussed how they are getting services for their children. A number are homeschooling and shared ideas with each other.

My daughter is entering her teen years so the mother’s of teens were very gracious about sharing their tips and tricks. Stating your expectations clearly and then leaving the action to the child seemed very effective and left little room for emotional upheaval. I have been trying it out on a small scale. It has been a really calm and effective approach so far. I just need to remember to ask her to only do one thing at a time. This is probably more about managing my emotions than changing her behavior.

Sessions Dr Jay Lucker
Dr. Lucker had two amazing sessions in which he talked about meeting the specific needs of each individual. I attended this session even though I have heard Jay speak repeatedly. It seemed like new material and very practical. The second session was on practical application. I did not attend this session but heard it went very well.

Dance Therapy
I attended two sessions by Kimberly Smith Daly. These were on Dance Therapy. The focus was very practical like how to hold yourself so you present clear boundaries and how to stimulate the synchronization of the left and right brain through movement. This was the only session my daughter chose to attend. I will definitely be looking for a dance therapist in our area.

People were very receptive of my presentation. I have been working through the Learning and Literacy Lab at the University of Nevada, Reno. At this point we are seeing that most of the girls (and boys) are delayed in their literacy development and timely intervention is important.

The Genetics 101 was fabulous.

I missed the session on Melt downs. My husband thought the interventions were very common sense based and practical.

The session on Executive functioning was a packed house so neither Don nor I could get a seat for it.

General prognosis
I had the privilege of attending the Sacramento area support group meeting in which Nicole reviewed her latest paper. It was, of course, presented at the conference as well. At the support group meeting I was able to ask Nicole if there is a light at the end of the tunnel. I have met a number of Klinefelter mom’s through the conferences and they tell me over and over that they would have relaxed during the childrearing if they had had any idea that by 27 or 28 their sons would be living such independent, fulfilling lives. So I asked Nicole if that is the general prognosis for us as well. She said she is seeing the girls come through things earlier than the mid twenties. She noted that many seem to settle by age seventeen or so. I’m so glad, mostly for my daughter, as the anxiety and struggles seem to rob her of so much joy. We are homeschooling her for middle school and monitoring the social anxiety to keep everything on an even keel. We have only been at this for about a month but she seems to have regained her confidence, interest in learning and sense of humor already. Doing this for just the early teen years seems very doable. Time will tell.

The session in which Hilary, a young trisomy college student, spoke was powerful as always. I can’t imagine having her composure and insight at such a young age.

I have short changed the value of the conference in a million ways but you get the general feel for it.
There are many out there who can offer a more detailed review.

August 2010

[English section] [Meetings]