Shameless Plug for the Angelman Syndrome Clinic

uncMay is almost over and I promised myself that I wanted to squeeze in this anniversary post about our visit to the Angelman Syndrome Clinic at Chapel Hill. The clinic is part of the University of North Carolina Chapel Hill – Carolina Institute for Developmental Disabilities. We were there in May of 2013 and I have yet to put anything in writing about our awesome experience.

At the time of our visit, only one place existed in this country as a complete facility to address the needs of those with Angelman’s Syndrome. In the fall of 2012 a second Angelman’s clinic was opened in Boston. It took us nearly a year to get an appointment to the clinic, but the wait was well worth it. The doctors were knowledgeable and engaged. It was so nice not having to explain Angelman’s Syndrome to the doctors and therapists. And it was even better meeting with a team of experts who knew a lot about what we were experiencing. Oh, how I wish every visit to a health care provider could be like this.

There are a few things to be aware of before embarking on a visit—first, there is a waiting list; second it is necessary to take care of pre-authorization with your insurance provider; and third, the appointment is an all-day endeavor. Even with those caveats, the visit was well worth it. The day included testing and then visits with each of the following specialists: Genetics, Neurology, Psychiatry, Psychology, Physical Therapy and Speech Therapy. It was really good stuff.

When we left, we received a complete record of Juliana’s evaluations along with recommendations that we could incorporate into her daily and school routine. I set up meetings with Juliana’s teacher and therapists and a lot of those recommendations are still in place today. While the clinic is not yet set up for follow-up visits, we gained a lot of valuable information and I now have this available at my fingertips for future reference.

If you are a parent of an Angel, I highly recommend considering a visit to the clinic. For other special needs parents of rare disorders, it’s worth it to see if such a facility or service exists. A few years ago, I had not heard of the Angelman Syndrome clinic. We were very fortunate that one of Juliana’s therapists was a part-time staff member. Shewingas assumed I knew about the clinic, so she mentioned it briefly one day. I’m so glad she planted that quick seed. I hope this post will serve as that catalyst for someone else.

Oh, and there is one last thing that I have to mention about the trip. My girls are both officially winged. This was a first flight for both Jessa and Juliana. They did better than I imagined (a post for another time) so it was icing on the cake for our trip to Chapel Hill.

Juliana’s New Bed

Next month, I will be working on a project to makeover a dresser (more about that in June). I’m a born Do-it-Yourselfer. I love completing projects and creating new things. Toddlerhood has curtailed this hobby for now, so new projects come more out of necessity instead of pure fun. Now, when I get the choice between relaxing, sleep or working a project, sleep usually wins!

My last DIY project was in February when we made over Juliana’s crib.

plain crib

The background on the project is here, but you’ll see the after pictures below. We are so pleased with the results. The bed is safe, looks good and came in on budget.

bed post2bed postThe best part of doing this project is bed time. When we tell Juliana it’s time for bed, she heads right over to bed and climbs right up all by herself. Well, she will usually give a little fuss because she wants to keep playing and not get in bed yet. It’s really funny when she pretends she doesn’t hear you.

But eventually she’ll walk right over and get down to it. I smile inside each time she climbs right in. This is a much safer course of action than the way I had to hoist her over the top. There were some frustrating moments to the project, and many, many extra trips to Home Depot, but it was well worth the safety and independence that she now gets to enjoy.

 

Distressing Behavior Shouldn’t Keep Special Needs Parents at Home

outingThis past Saturday we had the honor to attend the high school graduation and celebration of my nephew. James is an extraordinary young man who is smart, kind and generous. There is no way we would miss his graduation. I was excited for him and the celebration but I also kicked my planning into high gear to get prepared.

If you’re a parent of small children there is always some level of mental and physical planning that occurs before you embark on an outing. It goes something like this: snack/drink (check) favorite toy (check), diapers (check), mental armor to handle tantrums/meltdowns (umm, missing). Okay, I am being a little silly, but this is true to some degree.

Because I have both small children and a child with special needs, I’ve added more to my checklist. It includes all the items listed above with the following: frustration (leave it at home), Plan A (check), Plan B (check), Exit Plan (in progress). Now, I’m not being silly.

outings2We try to attend as many functions as we can, despite knowing that Juliana may not do so well when she gets around others. My husband and I decided early on that we would not stay home in fear of Juliana’s behavior. We just head out the door and manage it as best we can. Two weeks ago we had a great outing that I would love to bottle and duplicate. We went for a visit to my in-laws. I got Jessa settled to play and then I got to work on Juliana. With favorite toys and everything dangerous out of her immediate reach, I moved on to enjoy my visit. Much to my surprise, Juliana entertained herself for nearly an hour with not a mention of a fuss. As fatigue set in, she started to get a little fussy. So, that’s when I started to execute our exit plan. All in all, it was a great visit.

Things did not go as smoothly for graduation. Juliana sat in the auditorium for a good while and as a snack time neared she started to get antsy. We made a quick exit and headed into the lobby. Juliana was screaming so loudly, that we were asked to take her further away from the festivities. Even with doors and glass in between, she could still be heard inside. Oh boy!

When she calmed down, we stayed in the lobby and I peeked through the glass so I wouldn’t miss anything. Juliana covered a lot of ground pacing the empty lobby, busying herself with a lot of walking. She did well as long as there were not a lot of people around. But, hello it’s a graduation so there is no avoiding a crowd for long. She lost it again when the ceremony was over and the crowd was unleashed to spill into the lobby.

When I originally started this post, I was all set for it to turn out as the things I’ve learned about managing outings for my special needs kid—like how to make things smoother. Saturday wasn’t a total bust, but it wasn’t the best day either. But as I started running the mental playback, I reminded myself that it’s okay. I accomplished just what I wanted; to be there to see my nephew graduate and to celebrate with him as he begins a new chapter. By Sunday, I was still working to recover from the busy day of meltdowns. But, I’m nearly recovered now and that’s okay too.

We do the best we can as parents and sometimes our little ones are doing the best they can too with what they are facing. With each outing we’ve got a fifty-fifty shot of things turning out pretty good. We wish the odds were better and sometimes we get a break and they are. But for now, I’m learning and appreciating that fifty-fifty will just have to be enough.