Thursday, December 2, 2010
Like most people with Rett syndrome, Abby does not speak or sign. Understanding her thoughts can be challenging. In our family, we have learned to read her expressions and signals pretty well, but I spend quite a bit of time teaching others how to communicate with Abby.
First and foremost, I like to challenge the common assumption that a nonverbal person is cognitively delayed or has other problems with understanding. Abby's hearing is fine, I know she is intelligent, and as far as I know, she understands everything. I remind people of that often. Misunderstanding Abby's receptive abilities can affect the way people interact with her.
Next, I ask people to think about all the things they would want to say if they had to keep their mouths closed and sit on their hands all day. Without those two abilities, you need to get really creative. Abby communicates her needs and questions and emotions mostly through facial expressions and eye gaze.
There is a lot of great augmentative communication technology out there - and some of it has proven useful to Abby - but most of it requires some kind of consistent hand function. Abby does not have the fine motor control to touch small buttons or even to point to things with any accuracy.
Abby is an expert at making choices through eye gaze.
You can hold two or more things or pictures or words in front of her and she will look at the one she wants. She is learning to read and write this way. She has a pen pal. She is showing the teachers what we already knew. She is smart and she is very motivated to communicate. We just need to be ready to listen. Although I always felt sure that Abby was full of regular thoughts just waiting to be expressed, I'm especially grateful to Dr. Karen Erickson, whose enthusiasm about the learning abilities of nonverbal children has inspired me.
With all we've learned about successfully communicating with Abby, there are still times when there is no substitute for the spoken language (or sign language). When Abby is sad or sick, we can rarely pinpoint the problem. She can't make choices until she's finished crying, and even then, it's not enough. She may be able to tell us her head hurts, but think about all the types of pain you can have in your head.
A week or two ago, Abby stopped walking. We spent hours in the hospital and put her through countless tests, but the tests all came back normal. I was told not to worry, to monitor her. For over a week, we were put through the ropes of what many Rett families experience every day. Suddenly, Abby needed to be carried from place to place. Although she has a stroller, that didn't help her to get on the little yellow school bus or to get in and out of the regular bath tub. My back became sore and my eyes were opened to the world of non-walkers. In the back of all our minds was the question, "Will she walk again?"
She is walking again now and we still don't know what went wrong. She is growing really fast these days and it's possible she pulled a muscle or ligament. That's diagnosed by asking and answering questions. Like most people with Rett syndrome, even Abby's expression of pain is unusual, so when the doctors manipulated all her joints and she smiled, we still weren't sure she was fine.
I often say, about parenting, it would all be manageable if your kids didn't get sick. The same might be said for parenting someone like Abby. You can get used to a lot of things, but when something's wrong with your child, and she can't tell you what it is, you feel completely helpless.
I'm thankful my girl is walking again and smiling about it. And I think of all the Rett families who deal with medical complications every day. And I think of all the people who want to tell us what they are thinking and are just waiting for someone to understand.
Wednesday, November 3, 2010
This week, I completed the application form for another year of funding for Special Services at Home. The funding pays for the dedicated caregivers who come to spend time with Abby. Like so much of the paperwork, the application must be completed each year to show continued need. There are problems with the system. Every year, hundreds of families are told that they qualify, but there is no funding left. They are on a waiting lists. There are all kinds of waiting lists for funding. The waiting lists for adult services are even larger - more people and longer waits.
Abby has yet to qualify for the maximum yearly allowance of funding. Each year I request the maximum funding, I must state my case on the application form, knowing full well that the best I can hope for is to get her on some waiting list. I have learned how the system works best. I put aside my motherly pride and I concentrate on every single bit of weakness and need she has. I paint the most devastating picture possible. It's not hard to do when you're dealing with Rett syndrome, but it leaves me wallowing in self pity when I'm finished two hours later. One of these years, I will follow my urge to write a simple sentence across the front of the form: "I beseech you to come and spend 24 hours caring for my child."
So, I sent the envelope off this week - still kicking myself that I forgot to explain how long it takes to feed Abby breakfast each morning - and I'm working my way back to a more positive, or at least balanced perspective of our lives with Abby. She is still having good days and bad days, but when she's happy, we're all happy. We are still tweaking the meds to see what works best for Abby. Abby missed the Hallowe'en festivities because she was having a bad day and needed a drug-induced sleep. But she doesn't define her happiness by our cultural expectations at all. She woke up happy to be able to spend time with her family and listen to some good music. There's always something to learn from her.
Last year, I wrote an article about the importance of respite care for the long-term health of families like ours. It's important for decision-makers to understand the value of that funding. We are grateful for what we have and even for the waiting lists. There are people in the world who could only dream of this much support.
Sunday, October 17, 2010
Hooray for another successful Run4Rett!
We could not have asked for a more beautiful, sunny day! Over 300 people attended the event and enjoyed the family fun and fitness. One of the runners who came to race (unrelated to anyone with Rett syndrome) commented that it was great to see how we all brought our kids out. I wanted to tell him I wouldn't be there if it weren't for my kids. I managed to complete the 5 km route along with many others, but I discovered I can no longer keep up to my 8-year old daughter.
The large crowd of supporters was a powerful reminder that we are not alone in the struggle with Rett syndrome. We were grateful to have so many familiar faces on Team Abby, along with many new faces. Caroline said to me later, "Mom, there were some people with Team Abby shirts on and I didn't even know who they were!" I assured her they were not impostors. Our support network keeps growing.
It was also great to see many of our Rett family friends, along with some new families. The beautiful girls and women with Rett syndrome certainly seemed to know they were the centre of attention for the day. Dr. Eubanks spoke about the many hopeful advances in research during the last year. For the first time ever, there are clinical trials going on to study treatments for the symptoms of Rett syndrome. Stay tuned for updates.
We are sincerely grateful to the whole organizing committee, under Juliana's direction, for planning and implementing such a worthwhile event. The long hours of hard work and organization have certainly paid off. Special thanks to Tim and Cindy, who coordinated the Silent Auction this year, to Trish, our T-shirt sponsor, faithful friend, and participant on Team Abby, and to all the people who helped look after Abby this weekend so the rest of us could run!
Abby was calm and tired during the event, but she managed to complete the 1 km route with her grandparents. On the way home, she became more animated and seemed to be telling us all about the day. She was quite excited! At bedtime, she was very attentive as I talked to her about the day and about the many, many people who love her.
We are all overwhelmed by the outpouring of support, both from the participants and from the many generous donors. Heartfelt thanks to all of you!
Friday, October 8, 2010
I find myself frustrated a lot lately. The paperwork and phone calls about Abby-related funding have not made my to-do list shorter. The daily tasks continue. The other day, I had an emotional moment in front of a shelf of Depends in the drug store. I can't find diapers to fit my girl. She's too big for the kids' sizes and too small for adults. I know someone, somewhere makes her size. But why can't they just have teenage-sized diapers at the store down the street? Nothing is simple. Besides, the permanence of this disorder overwhelms me at times like this. I start to wonder how I will be Abby's case manager for the next 60 years. Sometimes, I just want to be her mom.
Thanks to the Ontario Rett Syndrome Association, we recently attended a conference in Kingston. These conferences are held every two years and they bring together families from across the province. This year, there were also families from Nova Scotia, Newfoundland, and Quebec. Besides all the benefits of getting together for support, there is always a line-up of guest speakers on Rett-related issues. I came with my list of questions for families with older girls. I got some input and ideas about proper seating at school and arm bracing to calm the nervous system. I attended a workshop on estate planning and another one on the changes in the support system for adults with disabilities. There is always more to learn and I'm thankful for the people who are there with the expertise, especially the other parents and caregivers. Your donations to the Ontario Rett Syndrome Association support these conferences.
There has been a lot of progress in Rett Syndrome research in the last few years. We were grateful, once again, to have Dr. James Eubanks as one of the conference speakers. He is able to summarize very complicated studies from around the world and make the information accessible to non-scientists, so the parents can follow what's happening. He is currently at a European conference with several other scientists. When you look at the program, you will be amazed at how many people are working to find answers for our girls. Scientists have been able to reverse Rett symptoms in the mouse model, showing that the brain abnormalities in our girls are reversible. Now the challenge is to find a safe way to treat humans with similar effects. Recently, O.R.S.A. announced this year's research grant recipient of $35,000. Your donations to the Ontario Rett Syndrome Association support this research.
It's hard to believe the Run4Rett is only a week away! To find all the links to register or donate, scroll down two posts. Thank you to everyone who has shown support for this event in any way. It is not only our major fundraiser for O.R.S.A. It is a great chance to connect with other families and to visually see the support from so many people in our lives. Abby is not alone in this. She knows it. The shirts arrived this week and they look great! (Pick yours up on race day, inside the building, near the Silent Auction.) I put the huge box of shirts in Abby's room and told her she was in charge of them. She got a huge grin on her face. She is looking forward to the day as much as the rest of us.
We have a lot to be thankful for. Thank you for walking with us in so many ways.
Friday, October 1, 2010
The T-shirts have been ordered! Heartfelt thanks to Trish, Judy's physio friend, who agreed to have her clinic sponsor our team! Trish has been traveling to the event each year from Vancouver. Now, that's dedication!
Special thanks to Dave from Perth Promotional Products for all the extra work on the design and for cutting us a very fine deal on the shirts. I think he's losing money on us, but he said it was a very worthwhile cause!
Thanks Trish and Dave!
Thursday, September 16, 2010
With one month to go, we are getting lots of questions!
Thanks for your continued interest!
Ways to Register:
- Online through the Running Room
- Mail in registration
- Register in person on the Friday evening or Saturday morning
Ways to Donate:
- Sponsor someone who has a pledge sheet
- Sponsor Abby online
- Sponsor someone else online
- Mail a donation directly to the Ontario Rett Syndrome Association
If you want to come on Sat., Oct. 16th, but you don't want to pay a registration fee, please come anyway! There are many, many opportunities to volunteer. Let us know if you have questions about this. Team Abby is in charge of the Silent Auction this year.
Did you know...?
Your donations make a difference! The Ontario Rett Syndrome Association is operated entirely by volunteers, many of them parents of girls with Rett Syndrome. The annual operating budget is approximately $100,000 and the funds raised at the Run4Rett are typically around $50,000. Thanks for supporting our major annual fundraiser!
Friday, September 3, 2010
It's that busy time of year, when we're all getting ready to go back to school. Our kids have all grown a lot this summer. In addition to bigger clothes, Abby has got new wheels in the form of a bright pink specialized stroller! She's also picking up her new ankle-foot orthodics in two weeks. And we've ordered a new seat-belt system for the car. I've been busy completing a lot of paperwork to secure funding for all the things that come with the growth of a disabled child.
As you may know, the past year has been difficult for Abby, with frequent episodes of crying and general distress. This summer, she started some new medications that seem to be helping, although we are hoping to eventually see even more improvement.
Our school board made some changes this year, so next week Abby will start with a new bus driver, a new school, and a new teacher, with many new kids in her class. This week, she got to meet her teacher who is really nice. Abby is looking forward to getting back to school, so we are hoping for a smooth transition.
Thanks to everyone who voted in one or both of the online Pepsi Refresh contests. The Run4Rett did not get the $5,000 grant. The International Rett Syndrome Foundation came in 3rd place for the $250,000 grant for research, so they are in the running again for September. Unfortunately, they are no longer accepting votes from outside the U.S.A.
The Run4Rett is 6 weeks away now. If you're able to join us on Sat., Oct. 16th, you can register online or get the information from the web site.
Thursday, August 26, 2010
Get ready, get set for the Run4Rett!
Mark October 16th on your calendar.
The summer is flying by and it will be October before we know it. I'm going to try to get ourselves registered for the Run4Rett before school starts and the craziness returns to our daily routine.
If you'd like to volunteer this year, you can choose your duty on the Running Room site. Tim and Cindy are coordinating the Silent Auction and would love to feel the Team Abby love if you are not planning to walk or run. Course marshals are also always needed.
You are welcome to walk or run or run/walk or crawl either 1K or 5K or both. There is no pressure to keep up with Ben. Most of us keep a leisurely pace. It's always a fun day and your participation provides support to all the families living with Rett Syndrome.
Inquiring minds want to know... are we getting T-shirts this year? The answer is "Yes," but the details are top secret (i.e. not worked out yet). If you know of a business which would like to sponsor Team Abby, we are looking for a $500 contribution for the T-shirts in exchange for the company name/logo on the shirts.
Welcome to all you wonderful supporters of Abby, her family, and the Ontario Rett Syndrome Association. We decided to use this blog to post relevant updates about the Run4Rett, about Abby, and about what's new in the world of Rett Syndrome.
Whether you are a dedicated yearly participant or sponsor of the Run4Rett or you are just starting to wonder what this is all about, we are pleased that you've shown an interest! The annual Run4Rett in Ontario is the major fundraiser for the Ontario Rett Syndrome Association and your support and interest has and will help Abby and several other girls, women, and families who live with Rett Syndrome. Thank you!
Team Abby has been involved with the Run4Rett since 2005, when Abby's Aunt Judy dreamed up the idea. Since then, the team of extended family and friends has grown each year. Last year, we were seen sporting our spirit wear of bright orange shirts. Be sure to check out the photos and see how much fun we had!
Since last year's run, the money raised has gone to help many girls, including Abby. The Ontario Rett Syndrome Association joined the Neurological Health Charities Canada to help increase our advocacy potential and increase awareness with the government and the general public. The latest Rett Syndrome Clinic was opened at the Thames Valley Children's Centre in London and Abby had her first appointment there in June of this year. In addition, a $35,000 research grant has been awarded (recipient to be announced any day now). And we are looking forward to attending the biannual conference this September in Kingston. It is a valuable chance to learn the latest about research, support services, and medical management.
So, bookmark this page and stay tuned for all the updates.
As always, thanks for your support!