This is a letter we share with the parents at Gwendolyn's school at the beginning of each year. The purpose of this letter is, of course, to teach about Gwendolyn and her special needs. But, it is also to simply introduce inclusive language. Most parents want to be embracing and want to raise open-minded children but sometimes fumble and feel nervous about how to go about doing that for fear of offending. We feel that by talking about Gwendolyn and providing sample answers to the typical questions we get helps frame a positive discussion and gives parents an idea of how to navigate the disability topic. Because, in all honesty, there is nothing worse than a parent silencing their child's questions with a dirty look and a scurry away — that only teaches that difference is a bad thing. Gwendolyn has been embraced wholeheartedly at her school and we truly believe it is because parents talked to their children about her in a positive way — not with pity or with fear but in a way that reminded children that on the inside she is a kid just like them. We have had many requests for this letter from other special needs parents and so we wanted to put it on the blog to help others in their quest for inclusion.
Dear Fellow Washington Parent:
This is Gwendolyn Strong — one of your child’s fellow schoolmates. She is starting the second grade this year. Gwendolyn had an incredible kindergarten and first grade experience because of the accepting and loving community at Washington. We are so thrilled to be part of this school and look forward to another great school year.
Gwendolyn was born with Spinal Muscular Atrophy (SMA), a degenerative disease that affects all voluntary muscles, including her ability to walk, sit-up, speak, eat, breathe and swallow (similar to the more well known ALS/Lou Gehrig’s disease). What it does not hinder is her cognitive ability or her playful spirit. Gwendolyn’s disabilities obviously create many challenges and make her vulnerable to illness. But she wants nothing more than to just be one of the kids!
We have lots of equipment to help Gwendolyn do the things her muscles are too weak to do. She uses a BiPAP breathing machine connected to a mask on her nose to help her breathe. She uses a special wheelchair to get around. She eats through a feeding tube in her stomach. And she uses a suction machine to prevent her from choking (like the dentist). We always remind children that none of these machines hurt Gwendolyn – in fact, she asks for them because she knows they help her. SMA has now altered Gwendolyn’s ability to smile, so she shows she is smiling or happy by tapping her fingers together. When she is really excited, she taps them together rapidly.
SMA also makes communication a challenge. Gwendolyn is non-verbal and cannot speak in the traditional sense, but she uses her eyes, fingers, and sounds to interact with others. To say “Yes,” she rolls her eyes up toward the ceiling or says, “Gah”. To say “No,” she closes her eyes or makes an “Ehh” sound. She also uses the iPad or a PVC board with options to help her speak and is practicing with different computer technologies.
Because Gwendolyn’s machines and differences are immediately obvious to others, children always have questions — lots of them! And that is okay. We have found that discussing Gwendolyn’s differences in a positive way helps children learn acceptance. We try to always address their curiosity about her differences but we do our best to redirect the conversation to how Gwendolyn is also just like them in many ways. It is often difficult to know how to navigate these types of questions. Here are some examples of the most common questions/conversation we usually hear and our typical responses to help make you more comfortable discussing Gwendolyn with your child:
CHILD: Look (pointing at Gwendolyn to show parent).
SAMPLE RESPONSE: Oh that’s Gwendolyn. She goes to Washington, too. Maybe you can be her friend. I hear she was the first in her class to learn all of her sight words last year!
CHILD: What’s wrong with her?
SAMPLE RESPONSE: Nothing is wrong with her. She just uses her muscles differently than you do and needs a little help. But she loves running and playing in her wheelchair.
CHILD: But why?
SAMPLE RESPONSE: We are all different and unique in our own way. Gwendolyn’s differences are just on the outside. But she’s a kid just like you. I wonder what her favorite color is?
CHILD: What’s on her nose? Can she breathe?
SAMPLE RESPONSE: That’s her BiPAP — a machine that helps her take big breaths. Can you take a big breath? It takes a lot of muscles to do that.
CHILD: Can she talk?
SAMPLE RESPONSE: Gwendolyn talks with her eyes and her fingers. She rolls her eyes up to say “YES” and she taps her fingers when she’s happy. Do you think you can make her fingers tap?
CHILD: Will she get better?
SAMPLE RESPONSE: This is how Gwendolyn’s muscles will always be. But she’s a very happy little girl.
Gwendolyn is so, so excited to start second grade. She is smart and social and loves being one of the gang. SMA does not hinder her cognitive ability and Gwendolyn loves all the typical childhood activities. She adores being with other children and she loves learning new things — hip hop was a favorite last year. And she wants so much to feel included in activities with kids her age. This can be a challenge because of her physical limitations, but we try to help Gwendolyn do just about anything to allow her to be involved and have fun!
Of utmost importance, illness can be very, very serious for Gwendolyn. Because of weakness in her respiratory muscles, a simple cold can quickly develop into pneumonia and that could lead to hospitalization or worse. So, we ask you to please, please observe the rules regarding illness. If your child is sick, please don’t send him or her to school. If you can’t keep a sick child home, please tell a teacher that the child is feeling under the weather so we can keep Gwendolyn home that day.
Because of the severity of her disabilities, Tina (an RN) will be accompanying Gwendolyn to school every day. You will see her washing Gwendolyn’s hands regularly with antibacterial wipes. Although we are cautious about germs and colds, we want Gwendolyn to have as many opportunities to interact with your children – that is what she is most excited about. Please don’t be shy about encouraging your child to hold her hand, show her a toy, touch her, etc. We may wipe her hands afterward, but it is nothing personal
Thank you so very much for taking the time to read this note. You can learn more about Gwendolyn and SMA on our website: http://theGSF.org. Or, please don’t hesitate to ask us questions; we are an open book (just maybe not in front of our always-listening confident little girl).