Sunday, December 6, 2009

The UC Davis MIND Institute

On Thursday we went to the MIND Institute for a second visit. We feel very lucky to live so close to the MIND, as we know folks come from all over the world to go there. Quinn is enrolled in the "baby study" there, a study comparing the visual processing of children with Fragile X or Down Syndrome with typically developing children. Quinn was not too into the movies they show to assess visual processing; he much preferred the Yo Gabba Gabba YouTube Clips they show in-between the study movies to keep kids interested.

While Quinn was watching the movies and completing the Mullen Assessment, I met with other researchers to complete a parent interview (including the Vineland Scales and a genogram). After we'd finished with the research stuff, we met with Dr. Hagerman and her colleagues for a clinical assessment.

We came away with some helpful recommendations/ideas:

- We're going to try a little tiny bit of sertraline with Quinn to see if it helps decrease anxiety and encourage expressive language skills. We were offered this last year and refused, but as Quinn is still not really talking, and they have had some success with sertraline and few side effects, we're willing to give it a try.

- We can wait on moving to the big boy bed

- We can continue to move very very slowly on potty training (Quinn likes his Elmo potty and likes to sit on it and make Elmo talk, and that's about it)

- We are definitely right to be concerned that Quinn's not getting enough/the right kind of speech therapy at school. According to their assessments (which differ somewhat from other assessments Quinn has had), last year his expressive language was at 7 months, and this year it is only at 9 lots of work needed there.

- A few sessions with an in-home behavioral therapist can help us avoid tantrums, which often involve Quinn's biting us and pulling our hair.

One thing we really like about going to the MIND is not just the specific helpful advice, but how everyone there, including the other families in the waiting room, "get it". No one gives us really stupid advice (as we commonly experience out in the world). No one stares or asks silly questions. It's just such a pleasant place to be. We are very grateful for the opportunity to meet with such knowledgeable, friendly people and it gives us hope that we have options for managing some of Quinn's special needs.


Zombie Mom said...

I am soooo happy you have this fantastic resource in your backyard. I thought about you all a lot and wondered how the visit to MIND went. Its great to hear that there is place for you to and get solutions and also to have people "get it".

I would love to take you upon a weekend playdate soon. I am about to stop with all the travel and look forward to catching up.

Warmth and Love to all of you

Holly's Mom said...

Sarah/Zach I am glad to hear it went so well. How much Sertraline will Quin be taking? I wrote two posts on the subject recently, if you want to see them here.

Holly has been on it for just under 2 months and we are very pleased.

I am so glad to hear the researcher's are Still using the Yo Gabba Gabba video's we told them about. It's Holly's favorite show, and I was showing them to her on the iPod, and they were so curious about it, and suggestions we could find them on You Tube. Since we were searching on the fly then, they didn't have the best clips, I hope now they have some good ones book marked.

The other trick we used was feeding holly snack, she ate about 15 strawberries and a whole container of Pirate Bootie, to get her through I think 7 videos.

I thought I recalled you mentioning you were with Kaiser, if so, could you email me your pedi's name, we are considering switching, and would love a recommendation.

Hope Quinn's feeling better, it was lovely to see you this weekend, and we hope you have a Great Christmas and New years, we will see you in January.

Sarah said...

Zombie Mom, thanks for the nice note - we'd love to catch up and have a play-date soon. Holly's Mom, I'll have to check the prescription (which we haven't filled yet) to see how much sertraline Quinn will be taking. I'll definitely check out your posts. And how cool that you guys are the ones who suggested the Yo Gabba Gabba videos. : ) Unfortunately we don't have Kaiser. Quinn's doc is through Blue Shield. Email me if you want her info anyway.