Another Christmas has come and gone, we had a month of elf hijinks (Elf on the Shelf: 2013 Madness), a month of decorating, baking and shopping. It’s my most favorite month of the year.

To be honest, I’m not sure how I’ve maintained this love of Christmas. Christmas with a child with special needs has been a unique blend of joy and heartache. When Caleb is happy, the room glows with it. When Caleb is stressed or anxious, there is no glowing…just tears. Many, many tears…both his and ours.

There have been times over the years when Eric and I have looked at each other…worn out, emotionally exhausted, physically drained…and I’ve wondered, “Why? Why us? Why our son? Why can’t joy just be joyous for a change? Why does it have to bring such anxiety with it?” There have been times over the years when I’ve felt selfish for wanting another Christmas like I had as a child because it isn’t about me anymore. I would recall my father telling me that the best part of Christmas is seeing it through your child’s eyes and I would think…Christmas never looked this dark and scary before.

Eric and I learned to adjust our expectations, we tried out traditions and rejected those that didn’t work for us. There is no driving around looking at Christmas lights for us. Caleb has no interest and slowing down in front of strange homes triggers his anxiety. I can see why, he was always wondering if we were stopping and expecting him to go in to a new place with strange people. No amount of reassurance eliminates that. So, we don’t go.

We learned that presents triggered his anxiety. There was too much excitement and tearing of paper and wondering what was inside. He also doesn’t like being the center of attention. We wrapped fewer gifts and we did not pressure him to open them on any timetable. It once took days for Caleb to open all of his gifts. So not the Christmases that Eric and I envisioned.

We found traditions that Caleb loves, going out to find and cut our Christmas tree was the first, the Elf on the Shelf has become another favorite. We found things about the way he enjoys the holiday that make us laugh, the angel on the top of the tree is greeted every time he walks into the room, “Hiya, angel!,” the way he races up the stairs to watch the tree lights slowly turn on (Eric has them on timers, shocker.)

But it was still not the Christmas that we dreamed of. Every year we tempered our expectations but still had that moment of sadness at some point when we watched him struggle through what should have been fun. And yet, we kept at it. We kept adjusting to wherever he was at that time and we kept pushing.

Last night, on our way home from my parents’ house after a looooong, loud, present filled day, Eric looked at me with tears in his eyes and said, “It took 9 years, but we finally got the Christmas I dreamed of.”

And he’s right. We cut our tree, we welcomed the elves back into our home, we asked Caleb what he wanted Santa to bring, and he told us! He woke us with the word, “Santa!” and raced to the tree eager to begin. He pulled presents out from under the tree, read the names and handed them to Mommy & Daddy appropriately, he opened his…happy and commenting on each. The things he had asked for were under the tree and he said, “Yes, we got it!” when he found the things he wanted most.

After the rush of opening presents, he and Eric made us breakfast (french toast) using one of Caleb’s most desired presents (a pink mixer!) We filled our bellies and collapsed in a heap on the couch all snuggled together. Eric dozed, Caleb played Angry Birds and I just soaked it in. I’m not sure I’ve ever been more content, ever.

Then there was more. Rushing and excitement and loud conversations at Grammy & Grampa’s house. There were cousins to jump or step on (they’re all much older, they can handle the roughhousing!) There were hugs and high fives and Merry Christmases. There was a frozen pizza, wrapped up by Grammy that instantly became his favorite gift ever. It was cooked and completely consumed by Caleb that afternoon. Blur, blur, blur…and then it was over.

We were on our way home. Caleb was quietly playing with new toys and reminding us to stop for gas (which we needed) and maybe some “KFC” (which we did NOT.) And riding down that dark highway was when it hit us. It was Christmas, really and truly Christmas…the one we had feared we would never have, the one we had mourned in years past…it was here, we did it. He did it.

One image that will stick with me forever is watching Caleb stop throughout the morning to study the three pictures that Santa left behind when he came to drop off presents and pick up the elves. He would look at them, one after the other, very seriously. It was almost like he had to keep coming back to prove to himself that he had seen what he thought he’d seen. It was pure innocence and wonder.



Which is exactly what I wanted Christmas to be for him, and for us. I finally got to see it, Dad! It was amazing!

Family Leadership Series

Family Leadership Series

Late last week, when Eric was at school picking up Caleb, the principal of the school happened to bump into him. She brought up a program that she thought he and I would be perfect for…but…either she couldn’t remember the name or Eric couldn’t. When Eric first brought it up, I thought we were being asked to speak at some sort of conference. I might have gotten a bit nauseated (shhh) at the very idea but I STILL said, “OK!” Why? Because speaking up for Caleb, until he can speak for himself, is my most important job. She promised to forward the information soon.

Then, on Monday, a message came across our Special Education Parent Advisory Council e-mail list. It was a forward from the PAC coordinator. I skimmed it and realized that this must have been what the principal had been talking about. First, I took a huge breath because I was now positive that this wouldn’t involve me having to speak publicly. Then my shoulders sank when I saw the schedule. It is SEVEN days…three of which are Fridays. I work!

I turned it over in my head for a day and then yesterday afternoon I just decided that it was that important. I have very (very, very) limited paid time off available and I have a lot planned for 2014….we have Advocacy Day in March and International Conference in July…plus, I do like to spend some of my time vacationing occasionally rather than always using it for fragile X stuff. I do need to step back once in a while! This might mean missing out on some vacation time with my family, it might mean less time in California around the conference and in DC around advocacy day but that is OK. No one can do everything, every time. I’m a big girl, I can prioritize and make hard choices. Are you convinced yet? It took me a while to get there!

I downloaded the application and, if I hadn’t been convinced when I started filling it out, I was by the time I finished. The application forced me to think about what I could learn, how much I could grow and how I could make Caleb’s life better.

The Family Leadership Series is comprised of three Fri/Sat (2) day workshops and one final day wrap-up Saturday session.

The workshops (which includes an overnight at hotel) will focus on:

Initiative and Leadership – Participants are given information on the background of the family support movement, leadership, advocacy and the significance of self-advocacy, how to effectively advocate towards creating change and ways to influence funding and delivery systems.

Creating A Vision – Participants learn how to create a vision for your loved one and innovative ways to think about community living and family support, best practices and meaningful options. Families are supported to “imagine better” and to create a vision, with and for their family members, that becomes a guide for their leadership and advocacy.

Policy Making at the Local, State and Federal Level – family members receive information on how to develop networks with legislators and families, on how to access and control resources that affect family stress and satisfaction and how to use legislative change to procure resources.

Our one final day wrap-up session will focus on:

Taking Care of ourselves – Relax, laugh, and experience the value of taking care of you.

What could be more important than that? I came up with nothing. So I emailed the application.

This morning I received an e-mail thanking me for applying and asking for a little more information. Shortly after responding to that, I got a call. I am IN! Yay! I finally told Eric I had applied, celebrated with my birches and then shared with allllll of my facebook friends, of course!

One of my friends in Louisiana reminded me she had done something similar and described it as “life changing.” Then I realized that another friend from Minnesota had shared a similar program before and then a friend in Newfreaking Zealand said she had also done a similar program and that it was an international program. Well then! I was curious, also, when I decide to do things I like to convince EVERYONE that they should do it too! Come on! It will be so much fun!! Ahem. So, I did a little reading (on Wikipedia, naturally) and learned…

There are programs of this type in over 35 US states and several other countries. The program was developed in 1987 in Minnesota by the Govenor’s Council on Developmental Disabilities (GO Minnesota!!) and financed by the U.S. Administration on Developmental Disabilities (part of the U.S. Department of Health and Human Services.) It is part of a growing trend of empowering families and individuals with disabilities to advocate for themselves and their right to live life as fully as possible within their larger communities.

So I clicked around and gathered all of this in one spot so you too can go to a workshop like this one!

If you are interested in participating in the program in Massachusetts, please visit the Massachusetts Families Organizing for Change website for more details:

If you are interested in participating in a similar program where you live, please visit the Partners in Policymaking website to view the list of active programs complete with contact information for the coordinator for each location:

  • In the United States: Active Programs (click on the link, it will open a new window.)
  • Other Countries: Active Programs (click on the link, it will open a new window.)

Partners in Policymaking also offers 6 online courses if you are not able to attend the classes in person.

So. What are you waiting for? Sign up for a workshop, it will be fuuuuuuun! (If not “fun” exactly from a carrier who has anxiety perspective…it will be worth it.)

To the lady at Papa Razzi in Framingham last night…

To the lady at Papa Razzi in Framingham last night…

Last night was our monthly FXMNO (Fragile X Moms’ Night Out) event. When we started these a few years ago there was just a small handful of us that would get together whenever we could coordinate schedules. We quickly realized that there was something so healing about sitting down over a glass of wine (or ginger ale)  with people who understood what our lives had become so we picked a regular date and we stick to it. We stick to it so we can plan our other responsibilities around it, it’s that important to us.

Last night, after we had been sitting, talking and laughing for nearly 2 hours, you approached us.

“I’m sorry, I don’t usually do this…” you began.

We all immediately quieted, expecting to be chastised for being too loud…for disrupting your dinner. We were all in high spirits.

“I just wanted to say, it’s been a very long time since I have seen a group of people enjoy each other so much.” You were curious about what brought us all together. I explained, briefly, that we all have children with fragile X syndrome and that this is our monthly gathering.

You apologized and worried that you shouldn’t have interrupted. We thanked you for coming over and invited you to join us. I might have had a lump in my throat.

You left first and waved goodnight. When we left, we all stood grouped outside the door and enjoyed a brief modeling demonstration. The well lit walkway made a great runway, don’t you think? Then we walked to our vehicles and slowly the group split up for another month.

Since last night, that encounter has been playing in my head over and over again. I am glad we thanked you but I don’t feel like it was enough…what I wish I had said was,

“Thank you for being brave enough to approach a table full of strangers. Thank you for not shushing us but for encouraging us. Thank you for interrupting our evening, ever so briefly, to let us see how very special this group of friends we have is. Thank you for making us stop and look at each other and realize that no matter how much fragile X has taken…it has given back too. It has given us friends and laughter and love. It has given us connections with people we otherwise wouldn’t have met. It has given us a family, beyond the ones we were born to, that we can share with and count on. Thank you for blessing us…and reminding us that we are blessed in so many ways. Thank you for making a wonderful night a little bit brighter.”

This morning when I logged in to Facebook I saw this had been posted by my BFF…

be kinder

It reminded me of you. You were kinder than necessary to a group of total strangers, I hope you know you that your kindness won’t be soon forgotten. Thank you.