Friday, January 20, 2012

WE ARE IN!!!!!!!!!!!!

Owen and I have been accepted to be in the study, (see below), which takes place at the world renowned University of California MIND Institute. As a further example of my insanity, the research study will require monthly trips to Cali for SIX MONTHS (all expenses paid, genuine WOOT!)! Yep, I'm insane but beyond excited, apparently this place is like the Mother Land for Fragile X.
Six trips to Cali with 3 year old who has the mentality of a 2 year old and the body of a 5 year old? That, I'm a leeeeeettle scared (lotta scared). However I will be looking into the Boston Wings for Autism Program which is for a program for children with special needs to help prepare for air travel.  We will be starting the research study in May so we have time to prepare.  Like calling the doctor and getting MEDICATION.  (Maybe some for Owen too.).

"Study: Parent Mediated Language Intervention for Young Children with Fragile X Syndrome

The Laboratory on Language Development in Neurodevelopmental Disorders has received funding from the National Fragile X Foundation to conduct a pilot study examining a parent-mediated language intervention.  We are now recruiting children with fragile X syndrome and their biological mothers to participate in this study. Children should range in age from 2- and 6-years, have a confirmed diagnosis of FXS and have very little spoken language. Participation in this project will require parent-child dyads visit the MIND Institute once per month for six months. Travel and related expenses will be covered by the project. The format of the intervention sessions will include written information and video examples as well as clinician coaching and feedback during parent-child interaction.
Many research studies for other groups of children have demonstrated that parents can support their child’s language development by playing and responding to their child in ways that are verbally responsive; that is, by using child-centered strategies that provide frequent opportunities for language learning. Thus, teaching caregivers to maximize their use of responsive verbal strategies during daily routines and interactions has become an empirically supported approach to early language intervention. Compared with clinician-implemented language interventions, involving the parent as the intervention provider leads to increased intensity of treatment and increased opportunities for children to generalize newly learned skills across everyday environments.
Our language intervention program, which is delivered by speech/language clinicians, incorporates two additional components that we hope will make the intervention especially useful and convenient for families of young children with FXS.
  1. Use of positive behavior supports to decrease challenging behavior
    In  addition to delays in spoken language, young children with FXS also can display a number of behaviors (for example, hyperactivity, anxiety, and symptoms of autism) that interfere with the ways in which they initiate social interactions, play with toys, and participate in the types of shared interactions that support language learning. Our intervention program includes a functional assessment and behavioral support planning from a Board Certified Behavior Analyst. In addition, positive behavior supports are integrated into all intervention sessions with the goal of decreasing challenging behaviors that can disrupt the process of parent-child interaction and interfere with successful language learning.
  2. Use of distance technologyTo increase the number of sessions during which the parent can receive feedback and coaching from a clinician, parents will participate in weekly intervention sessions conducted via distance technology. In addition to decreasing the need for families to travel to participate in the intervention, the use of distance technology allows the clinician to provide feedback and suggestions to the parent as they interact with their child at home.
We are very excited to offer this intervention program and encourage you to contact us if you are interested in participating."


  1. Is it University of California, Davis? (UCD)? That is about 20 minutes south of Sacramento - fantastic school!

  2. Yes yes yes! I neglected to mention I had thought we didn't get in when I didn't hear back from them by a certain date. Turns out I was wrong!

  3. Congrats!!! So exciting! (& you are VERY brave!!!)

  4. You will love Davis. College town. Everything in town is related to the college. The people in Northern California are so friendly and open. It is very different from New England. Make sure they fly you into SAC and not SFO. It is a 20 minute drive down i-80 as opposed to 2-3 hours from SFO. If you have a spare day go to Lake tahoe. One of the most beautiful places on Earth. You are such an advocate for your son.

  5. Did you ever think you would be a parent with lots of services in uour home?
    I surely didn't realize what thst meant. I lost family, friends, coworkers and even clinicians who thought " its that mom that created this"..

    We do what we have to for our kids. You will do great in California. Congrats!!

  6. This may seem like a stupid question but feel i can ask it as i read your postings!

    Did you ever or any other mom consider getting a genetic test prior to having kids?
    I wonder how often parents check. Did that change your thoughts?

    I am at that place.

    Just wishing for ideas.
    Thank you

  7. That is so amazing, Quinn! How nice for Owen to experience all of this "alone" time with you. Again, so amazing and I'm so excited for you.

  8. I have certainly found it difficult to be the client receiving services instead of the staff giving them, especially because I have a high standard of what I expect!
    What is probably a longer blog is the answer that yes - we did receive genetic counseling, but were denied genetic testing by our insurance company. Today, there is much more known about fragile X and fertility issues, but there is no guarantee, even with medical science, of an x-free kid. I have received emails from parents who have children with significant and possibly terminal genetic problems, some of those parents have regrets. Everyone is different.

    More adventures to come. Thank yall!

  9. kathleen. Dis you get genetic counseling because of fragile x?

  10. There was mental retardation of unknown cause in my dad's family (no one knew Fragile x ran in the family). Also, Fragile X has only recently been diagnosed in 1991.

  11. It impresses me how quicly you went from grieving to being an advocate and tunnelin that grief into action. That is not an easy thing to do. I hope it turns out to be all you expect it to be

  12. Thank you! I didn't intend on being an advocate, I just want to get my son the best care I can, and try and protect and help my family. I don't imagine finding a cure, I just want to try to live the best I can. That's it! It's from a selfish place really, I think. But I should probably just shut up and say thank you!

  13. Parents have that decision to be "active" and advocate for their kids. Its harder to be the advocate and work hard for your kid. People have judgements then parents feel like failures and give up.

    Have you ever connected to family organizations...they get it!! And we have many in Massachusetts. Family organizations are organized and run by parents.

    I enjoyed learning from a group called helped me personally and networks.

    My challenge with support groups is the constant " b**tch" sessions. Not for me :)

    Keep your research going!!! I believe that parents help their own kids many times by finding answers.......

  14. I can't wait to hear how the program goes!

    My son is 2 1/2 with FXS and we had no idea there was anything like this in our family until he was diagnosed. Now we know he has it, my nephew has it and my sister, mother and I are all premutation.

    I'm in Australia and very jealous you have the MIND Institute, I'd camp out on their front lawn if I thought it would help Connor. :)

    I'm really enjoying reading your blog, thanks for sharing your heart with us, it's nice not to feel so alone.

  15. I checked out, VERY interesting!
    Connor's mum, yes there is quite a few of us out there. I see you are already hooked up with FX of Aus, are you also in some of the facebook groups? Another great way to find support and commonality. Thank you for reading!

  16. Kathleen
    We all here at Immanuel Lutheran Nursery School wish you and Owen the best on starting your adventure. We miss him and his wonderful smile! Stop in and visit sometime.:)

    Kristine and Staff

  17. Thanks Kristine! We miss you guys too. O still points excitedly when we drive by - heard you are now in charge there, congrats! xoxoxo


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