Erik Quinn: The Heart of a Family: Guinea Pixie

Saturday, June 14, 2008

Guinea Pixie

Well some say life will beat you down
Break your heart, steal your crown
So I started out for God knows where
But I guess Ill know when I get there

-- "Learning to Fly" Tom Petty

It's only just after lunch, but I had to post this very minute.

When we filled out the paperwork for the convention, I checked the box stating that we did not want Erik to participate in any research at the event. I find myself being perhaps a bit overprotective in this regard. I admit my own personal issues come into play here. Who wants their child to be a guinea pig?

The phone rang shortly after I returned home from a shopping outing today, and a pleasant-sounding woman on the other end asked if I was Erik's mother. She identified herself as Carolyn Mervis from the University of Louisville, someone who is quite involved in WS research at the present time. This was the last person I expected to call the house. I immediately sounded like a teenage girl who had just been asked to senior prom by the football quarterback. My excitement actually completely snuck up on me. I said, "Well, hi, Dr. Mervis!" Apparently, there was not much on our application that was not garbled by the person who processed it, including my name, e-mail address, my husband's name, and, most importantly, the fact I originally was completely against participating in any studies while we are in California. In fact, it seemed to be a miracle Dr. Mervis found our family at all.

Dr. Mervis told me she has seen approximately 500 people with Williams syndrome over the years. She studies language development, cognitive development, the relations between cognition and language, and genotype-phenotype relations involving cognition or language in individuals with mental retardation (mostly WS and Down syndrome) and individuals with normal development. She seemed excited to hear that Erik speaks as well as he does. After admitting my initial hesitation, I agreed to enroll Erik in a brief research study at the convention. She even offered to look at a copy of his IEP and translate it into what it might mean in terms of WS.

I talked to her for almost 30 minutes. We agreed to meet two mornings during the convention. I expressed my fears about attending this event for the first time, and she said something that was horribly ominous and profoundly comforting at the same time. I didn't tell her why I was nervous, but it turned out that wasn't necessary at all. She knew exactly what to say, anyway.

She said, "When you see the adults, don't be alarmed. There is great variability in Williams syndrome, and I assure you that many people with WS are quite successful. However, those people are not as visible as the others."


To me, this reinforces the fact I will possibly be shocked by what I see. While this in itself scares me to death, my feelings were instantly validated and followed up with a giant, warm helping of hope. Even the negative has a positive in this case, if that makes sense. I heard myself telling her that if anybody could make it with this disability, Erik could.

And I meant it.

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Anonymous Auntie Dee~ta said...

With a warm helping of HOPE! I think that was my favorite line!

Yes indeed! Brian and you need to throw that party after the convention so the rest of us can hear all about it!!! I think no I believe that you guys will come home with great and I mean GREAT things to share with us all!!!!

I love you and thanks for sharing!
Dawnita aka Erik's Auntie Dee~ta

5:36 PM  
Blogger Julie said...

AWWW, your last statement made me get teary eyed. I have gotten the impression after comments from other parents that Noah's speech is pretty good for WS at this stage also. In fact it is something I am least concerned about. Thank you for commenting about her on my blog. I hope you come back with all sorts of info for the rest of us. I have a feeling when we do make it to a convention that it will be just Noah and I due to the cost. Have fun!!!

6:37 PM  
Anonymous Heidi said...

It must have been a blind person interpreting your handwriting Nance. It couldn't be more precise! Geez!!

Yay for hope :)

8:01 PM  
Blogger ccomfort said...

Hi--I'm co-chairing the convention and have a 20-year-old daughter with WS. Attending a convention is pretty overwhelming for first-time families but you will come away with a wealth of information. I've made many wonderful friends through the WSA and always enjoy the conventions as it allows those of us not geographically close to reconnect. My daughter loves the activities and makes the most of her time. Many of the adults are very successful and quite capable. My daughter, Heidi, is beginning a transition program at UCLA in the fall--she'll be living in a university apartment, taking classes and getting lots of support in independent living. Our kids have come a long way and so has the WSA! Can't wait to meet you in Anaheim.
Carol Comfort
RE: errors on your registration--the WSA office only has a couple paid staff members who are handling ALL the registrations and conference details. Most of us who are planning the convention are volunteers who do this in addition to the rest of our lives!

9:54 AM  
Blogger Katie said...

I am really glad she called you :)

6:52 PM  
Blogger Every minute counts.... said...

I have always felt that Dr. Mervis may not know everything but she really does care about kids/parents and tries to help if she can. Yes, she is super busy and is horrible at returning phone calls/emails sometimes BUT the bottom line is...statements like she told you, you either love her or hate her but she will tell you the truth. I constantly tell people who ask about the experience of your child being have to remember you are looking to her to tell you what is not working or what you need to work on more, she is not sugar coating everything, she will tell you what she believes. If you don't like what she has to say, all I can say is I see it as something to prove her wrong in. Never underestamate your own child. I know my child has proved so many people wrong at every turn!! I'm sure Erik is the same way, tell him he can't and watch him do it!

5:58 AM  
Blogger Amy said...

Word of advice, Dr Mervis is a researcher and her interests in our children is purely academic, don't get sucked in too much...we all got a wonderful greeting the first time we spoke to her but once she gets her data, she sorts her relationships based on her research needs. I know that sounds a bit cold, but that is the conclusion I have come to after speaking to so many people now who have had negative experiences with her. xoxo

8:25 AM  
Blogger jbgrinch said...

Good luck at the convention, I remember going to the first adoption convention and being in stimulus overload for days after. Bring home lots of information and then relax and go thru it as you can deal with it. I hope that Erik gets a chance to make some friends there too. Have fun

8:56 AM  
Blogger kathi said...

That's something we've all known, if anyone can, it's Erik.

I'm so glad you got this call. It's timing is perfect. I know it's got to be scary for you, but you're one of the strongest people I 'don't' know. :) You may not see it, but I know it.

5:47 PM  
Blogger Kerry said...

What I wrote to Julie about visiting Mervis was this: I have been to Mervis twice and while I didn't have a negative experience, I probably won't go back - ONLY because we have a great WS clinic in Boston. I feel like I got similar information in Boston, plus a little bit more because they also addressed his PT issues, with Brady's low tone are so closely tied into his development.

I enjoyed Louisville and I'm glad I went. I never had any problems with communication, and I feel that if I needed more info I would get it. Traveling that distance for the same info in Boston is not worth it to me, even though we had fun while we were there :)

I think meeting up with Mervis would be good for you- having seen that many kids with WS, she will give you much insight.

8:08 PM  
Blogger Heather said...

I was where you are. Hoping that Dr.Mervis would tell me that Caleb will be the most well adapted, smartest, 'most normal' person with WS ever seen. Fact is she didn't. She was also very excited to meet Caleb and even paid for our airline and hotel. I was just really depressed after the whole visit.
Over all
it was a good experience and gave me insight. .
Just not the kind I was looking for. I would recommend to go at least once in a life time.Just
don't want you to get to excited. It is very overwhelming. I really did like her a lot though. She is
very smart, kind, and easy to talk to. I can tell she loves her job.
I think that it is good to meet, or just even observe grown ups with WS. There are so many levels and varieties. It just proves that you can't predict your childs outcome, and niether can Dr. Mervis. They are just all so different.

4:37 AM  
Blogger Aspen said...

Wow, I bet that was a shocking phone call! I am half jealous and half glad it wasn't me. We have been to somewhat of a research center for Daven in Denver and while I found it fascinating...we didn't leave there with much more information that what we went in with.

I so admire your courage to attend the conference. I wish I was gonna be there to stand right next to you and hold your hand.

2:52 PM  
Blogger Perrin Hall said...

That's so cool! So what kind of dress are you wearing to the prom? :)

We had a great experience with Dr. Mervis. She gave us lots of good information about where Maggie is, and she even caught a few things that she was behind on that her Early Interventionist didn't catch, so we were able to start working with her more in those areas. We found her and her grad students to be extremely helpful, and we thought the trip was totally worth it. Hope you get some great info!

5:14 PM  

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