Find us on Surprisingly Special

As of 2016, this blog, Pancakes in Bed, is no longer active. Please come find us at!!

Tuesday, May 20, 2014

The Problem with a Crystal Ball

This weekend we attended a 22q family meeting at UC Davis' MIND Institute (MIND =  Medical Investigation of Neurodevelopmental Disorders) in Sacramento. All week I was nervous about going to this event. It was on the day that other cities were holding "22q at the Zoo" events, but this was the only event we heard about in our area and instead of doing a day at the zoo they called it "22q with the Zoo" and had the Sacramento Zoomobile come bring animals to the kids who were in the care of babysitters (UC Davis students volunteering) while the parents were in the meeting.

Calvin had a blast. Of course all the babysitters loved him and doted on him and went on and on about how awesome he is. #tellmesomethingidontknow ;) Henry was even a pretty good sport about hanging with the babysitters so that James and I didn't have to keep him with us. Calvin got some fancy face/body paint and got to see some reptiles from the Zoomobile. 

These pics were taken at a restaurant after the event. 
The meeting was kind of like a conference where different researchers and doctors gave short presentations on different aspects of development and care for kids/people with 22q. Feeding and eating... general medical needs and care... speech development and concerns... all the way to the really fun stuff like early signs and treatments of psychosis. Yiiiiiiikes. See why I was nervous? Who wants to sit in a meeting and hear about how your adorable two year old is at higher risk for developing schizophrenia??

Deep breath.

I didn't want to go. I felt like we had enough information to support Calvin right now. But James - being all science-y and knowledge-is-power-y wanted to be a pro-active parent and go hear the latest research. I do think it was the responsible thing for us to do. But being responsible is hard.

The last presentation was a panel discussion which included two young women with 22q who were there to share with us about their "transition to adulthood." One of the girls was an aspiring filmmaker who had worked with an inclusive film program at Davis (I think it was at Davis...) and she showed us a short film she had edited and produced. The other girl had a Master's degree in some area of child development (sorry, I don't remember the actual name of her field!) and she was currently a teacher. A 22q adult with a Master's degree is a pretty big deal. We were impressed. She was also married. 

It was encouraging to see these two women because it shows us that some people with Calvin's syndrome grow up to live "normal," healthy, and fulfilled lives. It took them a great deal of work and a great deal of navigating services to get the support they needed (for school/work/medical stuff), but they're all grown up and doing it on their own. 

The thing about having a kid with a diagnosis is that it's possible to make predictions and guesses about his future based on other people with the same diagnosis. Seeing those women was a little bit like looking into a crystal ball and seeing that college, graduate school, and marriage are all within the realm of possibility for Calvin. And that's a great thing to be able to hold on to - this vision of Calvin as an independent and successful adult. 

The problem is that the crystal ball also shows all the scary and worrisome possibilities. The research on the 22q population shows us lots of increased risks. Medical problems. Speech disorders. Learning disorders. Anxiety disorders. Psychosis. 

And I'm like noooo! Why did I look?! I didn't want to know those things! It's a burden to know those things. It's a burden James and I have to carry because it's our job to see them coming, catch the early signs, and get him help. A common theme from all the researchers and docs talking about all those possible disorders is that early interventions show the best results. Getting help as soon as possible is the best solution anyone's got at the moment. 

But I have to hold on to that vision of Calvin's possible happy future. How do I do that with the word schizophrenia haunting the back of my mind?? Then of course, there's also Henry and the crystal ball of possible outcomes for Dup15q!

Of course this "crystal ball" only shows possibilities. Only Calvin and Henry can show us what their outcomes will be. But I feel like these diagnoses have robbed us of the freedom to be fully optimistic about their future. We have to find a way to hope for the best, to believe in the best possibilities for them, while also working our asses off to mitigate the problems. And it's not just about looking to the future. Even if we put aside the crystal ball and focus on the present, it is still hard to balance caring for their needs and worrying about their struggles, with enjoying them and appreciating how wonderful they are. 

I remind myself that all parents have to do that. We all have to balance the effort of parenting with remembering to enjoy our kids. We all have to balance hope and worry for our kids' futures. From what I can tell, the difference for special needs parents is that crystal ball. Not every parent has doctors and researchers listing probable outcomes for their children. It's a blessing and a curse. And we're doing our best with it.


  1. The event seems like it was quite the trip, with as much words of encouragement as well as its own trials and tribulations. It is true that the crystal ball is a mixed blessing, and that the gift of insight is also its curse, but now at least you have knowledge. Knowledge and information is the tool that allows us as people to change what would otherwise be inevitable. As scary as it maybe, at least you know what's possible and that you can work towards the best possible future for your family. You're doing a great job of it now, both you and James, and as a person looking from the outside in daily, I'm always impressed by how much love, care, and thought you put into raising your children. There is no doubt in my mind that you will always do what is best for your kids, and that they will be alright, and that you too will be alright. The future is scary because we know what is possible, but we aren't sure of what will come to pass. Regardless, do what you can, do what you must, and if you need any help, I'm always here to lend a helping hand. Anyway, train is about to stop, so I'll see you when I get home!

  2. scary and daunting, to be sure. still knowledge is power and early intervention = best outcomes. the boys are in great hands with you and James. you have such a strong work ethic and are so deeply devoted to the boys! love will find a way, and love conquers all, and love always wins! thanks for another great blog post! love you!

  3. I just came across your blog through the link on Love That Max. I've never heard the term 22q before but recognized Velo Facial Cranial Syndrome. I work with a young lady with that diagnosis. She is one of my hardest-working students in a high school work experience program. She has volunteered at a department store at the mall and is currently volunteering in clerical and housekeeping at a hospital. This summer she'll start at a cafeteria at our district's administration building. The other half of her day is spent at school in a mix of regular ed and special ed classes. She is a great worker and we know this experience will be so valuable to her as she transitions out of high school and into the workforce and possibly even college! Just wanted to give you another positive 22q story!

    1. Thanks so much! It's always inspiring and reassuring to learn about older kids/adults with 22q who are doing really well.