Erik Quinn: The Heart of a Family: Possession

Saturday, September 22, 2007

Possession


Williams syndrome (also Williams-Beuren syndrome) is a rare genetic disorder, occurring in fewer than 1 in 7,500 live births. It is characterized by a distinctive, "elfin" facial appearance, along with a low nasal bridge; an unusually cheerful demeanor and ease with strangers, coupled with unpredictably occurring negative outbursts; mental retardation coupled with unusual (for persons who are diagnosed as mentally retarded) language skills; a love for music; and cardiovascular problems, such as supravalvular aortic stenosis and transient hypercalcaemia. The syndrome was first identified in 1961 by Dr. J. C. P. Williams of New Zealand.

(From Wikipedia)

The beautiful photo of my baby above was taken by my mother last weekend while Brian and I were away. Brian and I were talking last night, and we both seem to be on the same page regarding Erik's rapidly changing behavior and his frightening angry outbursts that seemed to begin overnight. For example, if I ask Erik to do almost anything at all, there is often a fierce battle that follows. Yesterday I was kicked in the stomach while I tried to brush his teeth and then later (twice) while changing his diaper. He looks directly into my eyes and almost smiles at me when he strikes at me and these outbursts occur. This behavior is very definitely not Erik-like, and I find it extremely upsetting. I have adopted a deliberately cool demeanor when it occurs and simply put him in his room for five minutes when it happens, but I'm not sure if this is the right thing to do or not. Yesterday when he was asked to find the car at the stables, he went face down in the parking lot and refused to move in front of everyone. Unfortunately, he becoming too heavy to carry very far! Luckily, most of that particular incident came out of being stubborn, not angry, and had a very normal (albeit frustrating) feel to it. His behavior became more aggressive after I carried him to the car. I worry about days when he suddenly seems very angry at me and the world without any warning at all. You may ask why I need to sort out what behaviors are related to my child's syndrome and what are of the normal 2-year-old variety. My answer to this question would be that I need to confirm that these outbursts are WS related because they are heartbreaking. I need to know my own child doesn't really hate my guts. I need to confirm that these are common WS issues that can be successfully dealt with and are not the result of something I did or didn't do. I need hope and reassurance. Pretty simple.

We agreed we need some new techniques and tools to help us cope with this worsening problem, and I found the book Understanding Williams Syndrome: Behavioral Patterns and Interventions by Eleanor Semel and Sue R. Rosner on line. Hopefully, it will answer most of our questions and promises solutions to behavioral problems common in children with WS. I'll post my input on it when I'm finished. The following is taken from what Ursula Bellugi had to say in the foreword in the book. That was the most compelling selling point for me, as I have great respect for the woman.

...the first comprehensive source book on the behavioral patterns of individuals with Williams syndrome. Not only does it summarize and analyze the research literature, it...provides problem-specific interventions, general guidelines for addressing problems...and innovative techniques for developing the potential of many individuals with Williams syndrome....combining research findings with real-life examples, clinical observations, and anecdotal reports...[it] goes beyond generalities by describing variation among individuals with the syndrome...as well as subgroups...[The authors]...are the ideal people to pull these strands together, both with respect to research and to intervention...

—Ursula Bellugi
Cognitive Neuroscience Laboratory, The Salk Institute

Labels: , , ,

15 Comments:

Anonymous Gua said...

We've seen the same thing. Yesterday he needed to leave Boppa alone in his office. He'd go to the door, I'd tell him we had to be quiet because Boppa was working. His knees would buckle, he'd become totally limp and fall on the floor, face down, arms under himself. NO WAY would he walk. I crouched and then was able to stand him up-- I held him up and explained again, suggesting that we do something else. It seemed to work, at least a couple of times. Getting down to his level seemed to make a difference. It may have been the solution that time only, but it was nice to feel like I'd made a little progress. It's scary, that's for sure. I'll be reading Semel & Rosner, too. Hopefully, it'll be a reference we use over and over.
Isn't that a great photo? He's singing as well as playing and seems to really enjoy it. Good grief, I love that little guy!

Love, Mom

7:39 AM  
Blogger Rosemarie said...

I believe at this juncture you must sort out which behavior belongs in what category and go from there. Great find regarding the book! I always feel comforted when I know I'm not alone facing a challenge, especially with my daughter.

8:15 AM  
Blogger Julie said...

Nancy,

I do know that sometimes WS children can have these types of issues. I really think it will be hard if Noah does this to determine what is just his personality and what is the syndrome. You see we have 3 girls and 2 of these girls threw the same type of tantrums, only one of them got violent. Amber, my 21 year old, and Grace, Scott's 7 year old although not blood related have very similar personalities. They are both stubborn, verrrrrrrrrry strong willed, know what they want and will get it no matter what the cost, and as Scott and I call it suffer from the "it's all about me syndrome". Anyway maybe WS kids just have very strong will because they have to fight so much for what they get. It is just and interesting thought. You said Eric just started acting like this which really scares me. Noah doesn't throw tantrums yet but he will slap us very hard in the face and smile about it. We are very stern with him and tell him "no" and put him down on the floor. Hopefully he will get it soon. I hope you can find some answers for yourself and the rest of us. Thank you for sharing.

11:27 AM  
Blogger camille said...

Wow, Nancy, that books sounds like a really good one. I just said to Adam, we're going to have to get it. I don't think Connor is really "tantruming" right now - he'll get mad if I don't put him on the swing, but he's not hitting or kicking us...yet. I hope you are able to find some great suggestions that work for Erik. Please share them with us too!!

12:50 PM  
Blogger Michelle said...

what a sweet photo!

I hope you're able to get some answers/solutions to the strong behaviour outbursts. I'm obviously no expert, but I don't think your child hates your guts! Especially at that age I don't think they know how to have the feelings of 'hate'. I think if his behaviours are that strong it would seem to be more than a typical 2-yr old tantrum, and probably related to the syndrome. Not that I have any experience w/that WS either! I just don't think you should blame yourself thinking you've done something to make him act this way; it sounds like he has a hard time maybe expressing his emotions and so it comes out in frustration?

8:19 PM  
Blogger Tara said...

I feel for you. We've been going thru this for quite some time. So many people said "ah, it's just the terrible two's" but my gut said "no way". Payton's eyes change when she gets in this mode. And, honestly, I've reached the point that I'm tired of being black and blue (I've always joked with my husband that I'm an abused mom :) I just took her to the doctor - trying to see if she needs anxiety meds or what route we need to go. Go with your gut Nancy. I think it's tough because they don't/can't communicate and understand as much as a typical child and if I picture myself in their world I can see myself being frustrated...and getting violent over it. I think what you are dealing with is ws coming out. I'll be thinking about you - I think it is so emotional and exhausting dealing with the behavior issues. Thanks for posting on it. It helps me to know I'm not alone.

8:35 PM  
Blogger kathi said...

I'd want to know, too, just for my own peace of mind...and to know how to handle it, if there is a way of knowing.

10:29 PM  
Blogger Katie said...

Hi Nancy,
I think i am about to purchase that book...
'typical' Two year old tantrums i have delt with are still fairly sudden, angry, and i hate you mummy in nature and they all seem to get them, Jaiden started these around two but where he differs is they get worse as he grows (now almost 4) where as the other boys got over it all by 3.
The outbursts Jaiden has are alot more frequent, unpredictable and usually 'fear' and 'I want' based - less violent (hitting, kicking) than my other two kids were, i have found he has become alot more violent quite recently and as he is getting stronger this can be quite painful adn destructive, however when the tanty is over he is full of kisses and cuddles and is the sweetest boy in the whole world.
Dicipline wise, i do the time out thing for any outbursts that are 'i want' or angry, but i dont dicipline the 'fear' outbursts as i believe this is well beyond any control at this point. I am trying to encourage the good behaviour with star charts, fun rewards etc (jai loves stickers) - what i find with Jai is the consequence, be it good or bad, needs to be immediate or he forgets the behaviour and it doesnt work.

5:43 AM  
Blogger THE PASLAY'S OF MOUNTAIN HOME said...

MY HEART JUST BREAKS FOR ERIK! I CAN'T EVEN IMAGINE HIM THROWING A TANTRUM AND THEN TO THE POINT WHERE HE HITS AND KICKS! I BET THAT IS HARD FOR BRIAN AND YOU! I DO HOPE THIS BOOK BRINGS SOME GREAT INSIGHT AND GIVES BRIAN AND YOU SOME GREAT TOOLS AND SUGGESTIONS WITH THIS BEHAVIOR. I WONDER IF IT IS A WAY FOR HIM TO COMMUNICATE... YOU KNOW? LIKE HE DOES NOT WANT TO DO SOMETHING SO HE KICKS AND HITS??? I JUST SAY THIS BECAUSE BROGAN USE TO SCREAM AND ACT SOOOOOO WILD BEFORE HE GOT HIS TUBES PLACED INTO HIS EARS... HE ACTED THIS WAY BECAUSE HE COULD NOT TALK, HEAR AND HAD NO IDEA HOW TO COMMUNICATE! THEN THE TUBES CAME AND LIFE CHANGED FOR HIM. I JUST HOPE AND PRAY THAT THIS BOOK AND PERHAPS WHAT OTHER WS PARENTS CAN SHARE WILL HELP BRIAN AND YOU AND ESPECIALLY ERIK!

I AM GOING TO BUY THIS BOOK AND READ IT!

ALWAYS KNOW THAT BRAD AND I KEEP YOU THREE CLOSE TO OUR HEARTS AND ARE ALWAYS PRAYING!!

BIG HUGS AND LOTS OF LOVE!!!!
DAWNITA
P.S.
LET YOUR MOM AND DAD KNOW THEY ARE THE BEST GRANDPARENTS EVER! AND THEY DO AN AWESOME JOB WITH ERIK!!! THEY KNOW THEY ARE BLESSED TOO HAVE ERIK BUT ERIK IS SOOO VERY BLESSED TO HAVE GRANDPARENTS LIKE BOPPA AND GUA!! TRULY! "I READ YOUR MOM'S COMMENT AND IT BROUGHT TEARS TOO MY EYES"

8:30 AM  
Blogger Every minute counts.... said...

I have that book myself. It is hard to understand in spots...takes reading it a couple of times but holds tons of information. Some for now...alot for later. Hope that you are able to find the answers you seek. It is very difficult to wade through all of the emotions and find out what drives the anger but you will figure it out. All children,get mad at their parents from time to time, all children throw temper tatrums, some of what you are going through with Erik is just a stage in normal life but all of it is impacted in one way or another by WS.
No matter what, he is still the little boy that rules your heart.

Noel

9:52 AM  
Blogger Heather said...

I think Noel is right on target. After dealing with these same outbursts for years now, my feeling is that it is normal for all kids. Our WS kids just cant process their emotions and regulate them the way we do. That is where the WS comes in and why they seem to be amplified. Caleb is pure emotion. Every feeling is right out on his sleeve whether it's happiness, love, excitement, joy, sadness, or just literally pissed off. His demeanor changes like the weather. It is normal for everyone to have a range of feelings so quickly, but we know how to keep them inside and sort them out. They cannot reason through them. just my thoughts.
just know that you are not alone.
xoxo, Heather

7:38 AM  
Blogger Amy said...

Hey Nance, the other thing I would like to add is that you could also be dealing with sensory issues on top on typical 2 tantrums, amplified by the up and down emotions of WS. Sensory issues can very much cause a "fight or flight" response (i.e. brushing the teeth=orally defensive=mommy gets kicked in the stomach).
XOXO
Amy

8:13 AM  
Blogger LZ Blogger said...

Nancy ~ I truly have no idea what this must be like, but LOVE can conquer all obstacles and I’m sure that yours for Erik will pull you through these tough times, even if only “Day By Day”! ~ jb///

8:33 AM  
Blogger All moments remembered said...

Nancy I am so sorry! I know how heart breaking it has been for me in the past when my children went through similar stages. They do not have WS, so I knew it was all being 2 or 3 or 4. I remember crying to our ped that NO matter what I do my daughter hates me half the time. It does kill you a little bit each time. I sure hope you can find ways to work with it. Let me just tell you this to cheer you up, TEENAGES are even harder and my heart has been busted into a million pieces by them. Long story but heart breaking. Being a mom is the hardest thing we will ever have to do but I am betting adding the WS makes it that much harder. I am sorry you have to go through all of this. Hugs to you and Erik. Just remember he loves you and it is part of being his age and probably part the WS, do not take it personally.
Your in my thoughts sweetie!!
Stacey

4:47 PM  
Blogger Lisa R said...

That is a terrific picture...can I get a copy?

4:42 AM  

Post a Comment

<< Home