Chatterbox

Hope has never been a big babbler -- sometimes she goes days, even weeks, without vocalizing much at all -- so it's a total treat when she gets in a chatty mood. I like to believe she has "Ma" down pat.

This video is from Labor Day weekend. Enjoy! Oh, and go STATE!

CdLS Conference, then and now

I remember the nausea I felt arriving at my first CdLS conference four years ago outside Chicago. Hope was about seven months old and at the time, Joel and I had never met another child or adult with CdLS (other than Will).

My mind raced with possibilities, fears, and worries. Where would Hope fit in the vast variability of CdLS? On the more severe side? More mild? How did the syndrome manifest itself? What was life like for each family? Hope really wasn't doing that much and I was getting eaten up by a bad case of the "what-ifs" and fear of the unknown. I was terrified.

In the end, it was such a good experience. The families we met were so welcoming. We learned a ton about CdLS and it felt great to meet a group of people and never have to explain why my seven-month-old was the size of a newborn. No explanations were necessary.

Fast forward four years and we just got back from our second CdLS conference last month, again in Chicago. I wasn't nearly as nervous as I was the first time but it was still a bit nerve-wracking. But again, we got so much out of it.

We met with specialists who actually know a lot about CdLS and are very familiar with it. We met a ton of wonderful families who again were so welcoming. And we again got to see where Hope fits in the mix. We've always known that Hope is not mildly affected; we still feel like she's more on the moderate to severe end of the spectrum.

Still, I left the conference feeling optimistic -- optimistic about Hope's future, about learning to communicate with her, and figuring out this difficult thing called CdLS and all the challenges and hurdles it throws our way.

I also left ready to work on maximizing Hope's potential. We met a speech therapist, Majorie Goodban, at the conference who has been working with CdLS kids and adults for nearly 30 years. During a consult with Hope, she told us that she believes Hope will speak one day, though possibly not until 10, even 11. She has met kids who have talked that late. 

I could've bawled right then and there. Speech is kind of like potty training in my mind -- something we aspire to and hope for Hope, but aren't definitively planning on. But it felt so incredibly good to hear someone so familiar with CdLS say that it MAY be in the cards for Hope. Her only hesitation was when she asked if Hope has any autistic features and if she looks at her hands (Roughly 50 percent of CdLS kids are on the autism spectrum and Hope definitely has some autistic features; she used to look at her hands quite a bit but seems to have outgrown it). That apparently sometimes works against speech. Anyhow, it was still really good to hear and gave us hope. 

We also met with a psychologist for a consult to talk about Hope's endless energy and destructive tendencies at times. She said Hope is very curious -- she said this as Hope was making laps through a hotel closet, stopping only to study her cute little self in the mirrored doors -- and that's a really good thing. She also said her energy seems high but she's doing what a lot of babies do (pick things up and drop them); the only difference is Hope is almost five. So while it may seem destructive, it's likely normal for where she's at developmentally.

One cool session at the conference involved adults with CdLS, several of whom live independently and have full, busy, happy lives. Above are two pictures of Emily Turner from Mississippi; the bottom picture is from the first time we met her at the 2008 CdLS conference when she was 14 and the middle picture is from this year's conference. Emily is a shining star in the CdLS community. She recently graduated from high school and she's off to college in the fall in Mississippi. Go Emily! As the picture shows, Hope was clearly taken with her at the final banquet on Saturday.

Will Hope be as high-functioning as Emily? Probably not. But I left the conference feeling hopeful about Hope's future -- about finding a way to communicate with her; about her developing her own tastes, interests, and sense of self; and that hopefully one day she will have some independence, but in her own way.

Anyhow, all in all it was a great conference. Oscar tore up the rug at the banquet on Saturday night. He also adores a book we got there called "Melanie and Tommy have two pet rats and one syndrome," written by a boy whose sister has CdLS. They did a special presentation about their book and yes, the rats were there too. We met so many awesome families; my mom thoroughly enjoyed the grandparents session that was held; and we learned a lot. Until next time...

A quiet girl

Not long ago, a fellow CdLS parent posted a status update on Facebook about his son's 10th birthday. He mentioned how proud he was of his son and then he wrote something that brought tears to my eyes. He said, "I'd give anything to hear you speak just a single sentence." I get teary-eyed just thinking about it.

Suffice it to say, Joel and I -- and I'm sure most CdLS parents -- can relate. Hope is four and in medical-ese, she is "non-verbal." That means she doesn't speak -- at all. Nada. Nothing. Zilch. She occasionally "vocalizes" -- another medical-ish terms that basically means she makes sounds here and there -- but it isn't often and it can't really be considered babbling or even attempts at language.

The closest I've ever heard Hope to saying a word or even a consonant sound is when she's very upset. She'll say "Ma." You have to listen closely but both Joel and my Mom have also heard her say, "Ma." She may or may not be saying "Ma" in reference to me, but I don't care. I'll take it. I'll take anything that sounds like a word and I'll certainly take "Ma."

Speech delay is very common in CdLS. Most kids don't speak, if at all, until five or six, according to the CdLS Foundation. To be honest, I'm not entirely clear on the physical reasons why CdLS kids don't speak but for Hope, I think low muscle tone may have something to do with. She's considered hypotonic -- meaning she has floppy muscles -- and it makes sense that affects the muscles around her vocal chords, making speech difficult. I think her hearing impairment also is a factor. That's Dr. Mo's take on it.

But just because Hope can't speak doesn't mean we're giving up on communicating with her. We'll do anything to communicate with her.

Earlier this month, Joel and I sat down with Hope's teacher and therapists at school -- PT, OT, speech, vision consultant, and hearing consultant -- and hammered out Hope's IEP (Individual Education Plan) for the new school year. Communication -- in any form -- is our No. 1 goal. Right now, we're working with what's called PECS, Picture Exchange Communication System. Basically, they're pictures with a heavy black outline that kids who can't speak can use to communicate. We have several hung on our refrigerator that Hope can grab and the goal is to get her to give them to us when she wants something.

On occasion, Hope will grab a card when she does, in fact, want a drink. Unfortunately, she also really digs the plastic covers on the PEC pictures so she often grabs them to chew on them. We just got a new set of PEC pictures because our first set was so mangled it looked like it been left on the floor during a Justin Bieber concert. Not pretty.

We've also used devices that have an audio component and a template for PECS pictures to slide into. For example, the last device, called a Go Talk, had 4 pictures in it, all of which had a recorded command such as "I want a drink" or "I want to eat." Occasionally, Hope would use it appropriately. There have even been times where I've seen her grab the "Drink" card from the fridge and go to the Go Talk device and hit the correct button. What a smart girl!

But Hope was very inconsistent with it. Recently, we just had to give the Go Talk back to her school so someone else could use it. We're now trying out a similar device.

Our goal is to eventually get an iPad. Tons of CdLS parents now are using iPads for their kids and I think Hope would love one. Will she use it to communicate? I have no idea, but I think she'll like using it. But before we buy one, Joel and I agree that we need to find some kind of extra duty, super-strength padding to go around it because no one can chuck toys like Hope can. We call her "Shiva, the Destroyer" for a reason.

So that's where things stand with Hope and her communication skills. In the meantime, I'm getting more comfortable telling people that she doesn't talk, or she's "non-verbal," which still sounds so clinical to me. I just had a technician out today to check some of Hope's medical equipment and he was very nice in acknowledging both kids -- I've noticed some people don't acknowledge Hope because she is quiet, which bothers me -- and he said "Hi" to Hope. She looked at him, which for Hope is as close to "Hi" as she gets, but didn't respond. I probably should've told him she doesn't talk, but I didn't. I said nothing. I'm not sure if that's the right response or not.

One last thought on having a child who doesn't talk: Just because Hope doesn't speak doesn't mean she isn't paying attention to what's going on around her or isn't aware of things. She does pay attention and she really does have a lot to say. We just need to figure out the best way to bring it out.

Ms. Potato Head is in the house

Two and a half years ago when we first started researching glasses for Hope, her ophthalmologist recommended a pair that would've made Mr. Potato proud. They were one long piece of plastic that you basically bent at the arms and secured with a strap to keep them on. They weren't exactly flattering. For anyone -- Mr. Potato Head included.

Fast forward two years and Joel and I have come to realize that Mr. Potato Head may have been on to something. Hope's wire-rimmed glasses are adorable but have been a bit of a pain in the tookas. More pieces have meant more things that could break, and they have -- mostly the arms. For one long stretch, we had to hot glue and DUCT TAPE one of the arms on every day. I have far more important things to do than tape Hope's glasses every day -- like laundry. I'd much rather be elbow deep in a 6-foot pile of baby clothes every day. Now, that's fun.

Anyhow, after getting Hope a new prescription this fall, we came to an important decision: no more cute, wire-rimmed glasses. We would succumb to Mr. Potato Head's charms.

So here we are and we are THRILLED. Seriously. If this wasn't a big, old "Don't judge a book by it's cover" lesson, I don't know what it is. Hope loves her glasses. I think the new, stronger prescription has made an incredible difference -- she's studying things from further away and tracking people across rooms, both of which she rarely did with her old glasses -- and we got the transition lenses so they turn into sunglasses as soon as she comes into contact with UV light. Hope had a corneal ulcer almost two years that left scar damage and makes her very sensitive to light so that's important. They're awesome.

Aesthetically, she looks a bit like Edna from Pixar's "The Incredibles" or a German librarian. We think she looks pretty hip. Thanks, Mr. Potato Head. We had no idea you were so fashion forward.

I went running yesterday -- "running" might be a bit of an exaggeration; a turtle could beat me in a foot race -- and the thought hit me again: Joel ran a marathon. He ran 26.2 miles. Pardon my language, but how frickin' cool is that?!????

Joel finished the 2011 Bank of America Chicago Marathon on Oct. 9. It was hot (a high of 77), insane (45,000 runners; an estimated 250,000 spectators), and incredibly gratifying. Joel exceeded his fundraising goal as part of Team CdLS and raised more than $2,800 for the CdLS Foundation. He finished in 4:44, about 15 minutes slower than he would've liked, probably due to the warm weather, but still great. He said he couldn't have done it without his amazing "Curb Crew" -- me, my mom, Anne, my brother-in-law Jeff, Mike, Hope, Oscar, and my niece Rose -- to cheer him on at four stops along the course. I'm convinced we deserved medals too for navigating Chicago's clogged streets and trains, which was a bit like surviving the "Amazing Race."

To everyone who supported Joel and our family, thank you so much. It was such an incredible experience and it felt so good to see him accomplish this goal, to give back to the foundation, and to honor Will and Hope.

Food fun

Like a lot of kids with CdLS, Hope has some eating issues. Nearly four, she's still a big fan of mushy food and very simple finger food like goldfish crackers. Chicken wings and ribs? Not so much. She lacks the coordination and muscle tone in her mouth to do much chewing, so like the geriatric set, she tends to gum her chow. If it can't be made malleable with saliva, forget it.

It's not just food. The same muscles used to chew food help form words and communication, which is also an issue. So Hope has two days a week of occupational therapy to work on exercises to help her chew, loosen her cheeks and remove some aversions to certain foods and textures.

We're delighted to report some progress. She's not there by a long shot, but Hope is slowly starting to take bites and chew some foods. No longer is simply inhaling her food like her dad going at a White Castle cheeseburger. She's taking deliberate, cautious bites and -- like always -- taking things at her own schedule and finding humor in the whole process. We're very proud.

Oscar also is going gangbusters on the food front and thinks he's ready for silverware and done with his wrinkly ol' parents at suppertime.

Fine dining

Good times in Seattle. Great company -- thanks, Aunt Molly, Uncle Al, Aunt Patti and Cousins Jeff and Mike -- good chow, super brews, fun runs and wonderful scenery. The kids did great. But we learned once again that they aren't quite ready for the white-tablecloth set.

P.S. -- We've been so lax about updating the blog these past few months that we neglected to mention that Joel is running the Chicago Marathon on Oct. 9 as part of Team CdLS to raise money for the Cornelia de Lange Syndrome Foundation.

We appreciate all who have been so generous over the years and cherish your continued support. To donate, go to Joel's FirstGiving page. We also have added a new link to the right.