What Do You Have In Common?

"What do you have in common"?  Last week I went to a women's bible study. At one point we were asked to form groups of 6-8 ladies and, in ten minutes, find out what we had in common.  We were told that nothing was too small and that there would be prizes.  So, I get together with a group of women that I'd never met before and one of them says, "I wanna win this".  Someone else says, "me too", another, "oh yeah, there's always good prizes", and so on until we discover our first commonality: we are all competitive and want to win the "what do you have in common" contest!  Now, don't forget that when we were given our instructions we were told that "nothing is to small to count" so, at first, we were throwing all sorts of things out there:  we were all women, we were all at a bible study, we were all in the same room, we're all daughters, we all had shoes on...etc...after a while we had to start discussions and conversations to find out what else might connect the eight of us but we found out things like we all own ugg boots, we all own a crock pot, we've all been to Hawaii, we all had some member of our family in the military and we'd all had the chicken pox.  After the ten minutes were up we had come up with 35 things that the eight of us had in common.  We figured we'd be in the running to win the prize.  The first group announces that they found 8 things in common, second group: 12, third group: 8, fourth group 6, the fifth group said that the only thing they had in common was that they didn't have anything in common.  Well, needless to say, we won. 

After the meeting I started thinking about the game and it made me sad to realize that a group of eight ladies sitting together for ten minutes couldn't come up with any similarities.  I started to think that too often, as people, we are quick to see how different we are in things like skin color, political views, clothing choices or parenting styles but we are slow to acknowledge how much we truly have in common.  Basic things like we are all human, we live on this earth together, we are all someone's child.

I loved how during the commonality game our group was able to come up with quite a few superficial things right off the bat but after discussion and conversation we came up with some really interesting and deeper similarities.  

It makes me wonder, when I walk into a store or a movie or I'm sitting in a waiting room and I look around at all the people...what do I have in common with them?  Who else in the room has had a parent die of cancer?  Who has a spouse in the military? Who enjoys theater? Who likes soccer?  Who has a child with special needs?  There is always someone else out there who can commiserate and understand what we are dealing with.  There is always someone, somewhere, that has been through or is going through a similar situation.

I guess what I learned from this exercise in similarities is twofold.  First, we all have things in common, some things are quick and easy to identify while some may take a bit of discussion and conversation to uncover.  Second, we are never alone in our journey.  We will never be the only person to have experienced a certain joy or despair.  Many people have gone through the same trials and celebrated identical triumphs as we have. There will always be someone out there who has had a similar path in life. To me that is comforting in a way.  Although I may not always know the people who have dealt with the same issues as me, it's reassuring to know that I'm not alone. When I do actually know people who are dealing with similar issues, it is a blessing to have someone who can empathize and sympathize.  For example, I'm part of an online group for parent's of Kabuki kids.  I love this site because even if we, as parents, only have that one thing in common, it is a strong, emotional bond that connects us.  We are able to talk about the accomplishments of our kids, the hardships, the frustration and the love and we all completely understand what the others are going through.  Then, as the online discussions grow, we find out that it's not just Kabuki syndrome that we have in common.  The discussions grow and change as we learn more about each other.  It's amazing to me how once we start talking to people and looking past our differences, we really do have a lot in common!

So, that's what's been on my mind...

Praiseworthy

"You shouldn't praise your kids for everything they do".  This was the topic of an article I read a few weeks ago.  The author was basically saying that one of the many problems with kids today is the fact that we, as parents, teachers, coaches, etc..., praise and compliment them for everything they do including mediocre or average work.  For example, a child who gets 7 out of 10 on a spelling test is told that they did a "great job" or a kid who makes 5 mistakes during a 3 minute piano recital is told "well done". 

Now, I agree with this idea in theory.  We shouldn't praise our children when they only do so-so...we are teaching them that so-so is good enough and that they don't need to strive to do any better. We are teaching them to be mediocre adults.  Would I scold my child for producing average work?  Of course not.  I might, however, say something like, "that's not bad, but I know you and what you are capable of, and I know you can do better." 
Where I have an issue with this concept is: you have to know the child in question before you decide what mediocre really is. The standard that you hold your child up to should be the child himself, based on his own strengths and talents, weaknesses and limitations.

I have two examples from my own boys. 

First, as you all know by now, my oldest son, John has a genetic disorder called Kabuki Syndrome (KS).  John has mild to moderate cognitive delays and has difficulty staying focused on a single topic. John learns things slower and differently than typical kids his age and he really struggles with taking tests. 
Every year in California, kids in second grade and higher take CST (California Standards Tests).  The child's score is categorized into 5 categories: far below basic, below basic, basic, proficient, and advanced.  Schools strive to get all children into the proficient and advanced categories.  Well, John took the CST last May.  He had a few modifications to the test taking environment but he took the same test everybody else did in language arts.  A few weeks ago we got his scores.  By just one point he made it into the proficient category!!!  Did I scream and shout and tell him how proud I am?  You bet I did! Did I tell him he's amazing and smart and that he did a fantastic job on his test?  You 'betcha! Because John's barely proficient is another child's perfect score!  John had to work and struggle and put in extra hours and be drilled on test taking strategies.  He put in so much effort for every single one of those points and he deserved every bit of praise and compliments I could give him for that proficient score.

Now, just so you don't think this only pertains to special needs kids.  Let me give you another example with my typical son, Robert.  Robert plays soccer.  He's not great but he enjoys the sport.  During practice, the coaches work Robert pretty hard and give him a lot of extra time and attention because his skills are not quite as strong as some of the other players.  At home, Robert and I will practice and kick the ball around.  He also helps out at his brother's VIP soccer practice.  I know how much time and effort Robert puts into soccer but he's just not a natural.  At Robert's last soccer game, during the last 2 minutes of the game, the score was tied 3 to 3.  Our goalie kicks the ball out into the field and it lands right at Robert's feet.  My heart stops.  Then, I watch as Robert turns with the ball, dribbles a bit up field, makes it around a defender and passes it perfectly to one of the other forwards who powers it into the goal!  They won the game 4 to 3!  Robert didn't score the winning goal but his footwork and pass allowed one of the stronger players to make the goal.  I know, and his coaches know, how much effort Robert has put into those basic skills of stopping the ball, dribbling and passing.  To someone else that might not have seemed like much...but to Robert... it was huge! Those few seconds were the culmination of years of practice and I (and his coaches) made sure he knew what a fantastic job he did during the game and that his fancy footwork and pass lead directly to the goal that won the game. We praised him profusely for what others might consider average soccer skills.

I guess what I'm trying to say is this:  it is definitely possible to lull our kids into thinking that average is ok when we praise them for passable work and mediocre performance.  When we tell them that they are doing "great" when the are really just doing "alright" then they don't feel the desire to strive for anything higher.  However, when our kids put in the time and the effort and do their best and try with all their might and they are still just proficient or average, I think they deserve all the love and praise we can give them.  They need to know that doing their best may not make them the best at something but that the effort they put in is noticeable and praiseworthy.

So, that's what's been on my mind...

Kabuki Syndrome - Part 1

My oldest son, John, has a rare genetic disorder called Kabuki Syndrome.  Obviously, since it's rare, not many people have heard of it and I'm constantly being asked, "what exactly is Kabuki Syndrome?"  Well, it's actually a fairly complex syndrome, but in a nutshell, here it is:


Kabuki syndrome (KS) was named by the doctors that discovered it in Japan back in 1981.  They chose this name because of the facial resemblance to the makeup worn by the actors in the traditional Japanese Kabuki theater.  The facial characteristics they used to make this comparison are highly arched eyebrows, thick eyelashes, downturned lower eyelid, large/wide eyes, blue sclerae (the white part of the eye), flat nose and large/protruding ears. 

As I said, KS is rare, it only occurs in approximately 1 in 32,000 births (lucky us).  However, it may be underdiagnosed because up until recently it was only identified by the presence of certain physical, medical and cognitive characteristics, which could also look like other disorders.  In August of 2010 the gene responsible for 70% of KS cases was discovered.  This will make it easier for future cases of KS to be identified.

Almost all kids with KS have five main characteristics:
1.  unique facial features (described above)
2.  skeletal abnormalities
3.  dermatoglyphic differences
4.  mild to moderate intellectual disabilities
5.  short stature

Along with these characteristics many of these kids also deal with a myriad of medical issues which could include:
hypotonia (low muscle tone), cleft or highly arched palate, feeding issues, behavioral difficulties, recurrent infections, hearing loss, heart defects, kidney anomalies, hypodontia (problems with their teeth), seizures, immunological abnormalities and weight gain during puberty.

Most of these kids are followed by a team of doctors including:  genetics, cardiology, ENT, audiology, opthamology, orthopedics, dentist, urology, immunology, hematology, endocrinology, gastroenterology and neurology.  They also benefit from Physical therapy, occupational therapy, speech therapy, behavioral therapy and sensory intergratoin therapy. 

The baby years are difficult for these kids (as well as their parents) because the babies often have feeding issues and failure to thrive.  Because of their susceptibility to infection they often have numerous respiratory, ear, urinary tract and skin infections.   On top of that, these babies are usually poor sleepers.  

Childhood also offers a wide array of issues.  They usually have gross and fine motor delays which can affect school work.   KS kids almost always have expressive and receptive speech delays and they have difficulty with appropriate social skills.  They have a hard time staying on task and focusing.  They often have sensory issues and they tend to perseverate (this is an obsessive behavior which means they say or do or think or ask the same thing over and over and over again).  Honestly, KS kids act a lot like an autistic and ADD kid rolled into one!

What is adulthood like for a KS kid?  There's not a lot of research out there yet and it really depends on the severity of the medical and cognitive impairments.  Although some of the medical issues may become more problematic as an adult, KS kids seem to have an average lifespan. 

Ok, I know that all read a bit like a journal article...sorry.  I was trying to present this in an unbiased way and not let my emotions about my son cloud the way I presented the syndrome.  The most fascinating thing to me about this syndrome is that despite all these kids have going on in their little lives, they are some of the nicest, kindest most generous kids you will ever meet. 
Life with Kabuki Syndrome is a daily adventure for John and our family.  The challenges are numerous...but so are the rewards!

http://www.kabukisyndrome.com/

The Note That Started It All

I posted this note on facebook about a week ago. The conversation with my friend that I write about in this note, and the impact it had on my life's perspective were pretty profound. It had been on my mind and in my heart for a long time. Finally, I decided to write it down. I'm still not sure why I decided to share it with my FB friends but I'm so glad I did. My friends had such wonderfully nice and supportive things to say! It seems that in writing this note I helped myself but maybe helped a few of my friends with perspective on their lives too! It also helped me realize what an amazing support group I have out there! I felt so good after writing down my thoughts and feelings and I got such positive feedback from my friends that I decided to go ahead with my idea to start a blog. So, here it is...the note that started it all:

Don't know why I feel the need to write this down but it's been on my mind for a while now so I thought I'd put it here...maybe I should start a blog. Anyway, a while back, a girlfriend of mine who is my age, single, with no kids, who I've known for a very long time said to me, "you have had such a charmed life." I looked at her with my mouth slightly open, a bit wide-eyed and just a little confused.

I began to think of my life: my mom and dearest friend, died way too early at the age of 55 after suffering through three years of ovarian and lung cancer and all of the chemo, radiation and surgeries that went along with it. I watched my dad suffer my entire life after a terrible car accident that left him broken and in pain. He was addicted to pain killers, got bladder cancer, acquired MRSA after hip replacement surgery and ulitmately died at 66, again, way too young. My two boys never got to know my mom, their Boppy, and they only remember Poppy sick and in pain. They will never know the love that only grandparents can shower on a kid. Speaking of kids...I have a son with a rare genetic disorder, Kabuki syndrome. In the first five years of his life he was in the hospital as much as he was at home. Twice in his little life we almost lost him. Once from an unknown infection, the next from RSV when he spent five weeks in the hospital. Four weeks in the PICU in a coma, hooked up to more machines that I've ever seen. No parent should ever have to see their baby like that. Since then we've spent every day trying to understand and figure out Kabuki syndrome, how it affects John and how we can make his life easier and better. He's medically fragile, ADD, autistic, has a heart condition, issues with his bones, he's hypotonic and apraxic. Every day is an adventure and a struggle. To make it even more difficult, I'm married to a man in the military so he's gone...a lot! There have been deployments from six months to a year with week long trips scattered throughout. During those times I have to deal with all the things I usually deal with: boys and school and doctor appointments and therapy appointments and house cleaning and grocery shopping and meal making and homework but I also have to do the things my husband usually does around the house " yard work, dog poop :-p, trash, home repair, computer fixes, discipline, bills. I have to be a mom and a dad. Also, my grandmother is 87 and in poor health and it has fallen mostly on me to help her. Thank goodness she now has a full time care-giver but it's so hard to watch her mind and body fail her. On top of all of this, I'm losing my sister, my best friend. I never ever thought that anything would or could come between us...but I was wrong. We are squabbling over decisions made by my parents before they passed away. Now the person who I talked to every day (multiple times a day), who I shared my happy thoughts with and told my deepest darkest secrets to...now we rarely talk at all. Not only that...but she's going to move out of state soon so the chance of us actually getting over this is slim. I'm sad because I feel abandoned, I feel like she's all the family I have left in California and soon I won't even have that anymore. I feel bad for my boys because they are losing their cousins...their best friends...I know how it feels. My heart is breaking over this.

So, after my friend told me I have had such a charmed life...these are the thoughts that quickly go through my mind. I don't voice any of them. I simply say to her, "Oh really, what makes you say that?" "Well" she says, "You grew up in a family that loved and supported you, surrounded by parents and grandparents that would do anything for you. They were there for you even when things got hard and they never gave up on you. You and your sister always got along and actually seemed to enjoy each other's company...you didn't fight all the time like I did with my brothers and sisters. I remember that you would actually go to family reunions in the summer and talk about all your cousins and aunts and uncles...how cool is that? To be surrounded by family. You got to be the lead in the high school play and you were on the varsity soccer team. You were talented and athletic! You were a princess at Disneyland and traveled the world as a Disney entertainer. You met your husband in the most romantic way: the Navy pilot falls in love with the Disney princess...in Singapore, no less! Does it get any better than that? You've traveled the world with your husband and the Navy. You are married to a hero, for God's sake! You have two beautiful kids who love you unconditionally. Yeah, I know that John is special but you have the chance to teach him that special is ok. You are molding two little lives...I don't get the chance to do that."

I listen to all she says. I think about how I see my life and how she sees it. I focus on the fact that my parents are gone, she remembers the loving family I grew up in. I'm sad that my boys won't know their grandparents but, luckily, they were amazing parents and showed me, by example, how to be there for my boys. She talks about all the amazing opportunities I had as a teenager and young adult...things I rarely even think about anymore but need to remember more often because not everyone had it as good as I did. I complain about my husband always being gone and all the work it creates for me and she reminds me that this life has alowed me to see the world and my husband is an amazing man. Way too often I think about how hard it is to have a child with special needs but, she's right, I have an amazing opportunity to teach both my boys that different is ok. It may be harder but it takes a strong person to be different. I get to help guide these fabulous boys from children to men. Wow...what an honor! I forget that these two fantastic kids love me for who I am...simply because I'm their mommy. This is a blessing that not all women get.

I guess it's really all about perspective. Sometimes you need to see someone else's view of your life to put it all into perspective again.