This is letter is about Maria Church – one of your child’s fellow classmates. Maria has started the second grade this year. This letter may seem as if it comes a little late, but better late than never, right? Maria had an incredible kindergarten and first grade experience because of the accepting and loving community here at Queen’s. We are so thrilled to be part of this school and look forward to another great year.
Maria was born with Spinal Muscular Atrophy (SMA), a degenerative disease that affects all voluntary muscles, including her ability to walk, sit up and sometimes 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. But she wants nothing more than to just be one of the kids. Maria is excited being in the second grade; she is smart and social and loves being one of the gang. She loves all the typical childhood activities. She adores being with other children and loves learning new things. She wants so much to feel included in activities with kids her own age. This can be a challenge because of her physical limitations, but we try to help Maria do as many things to allow her to be involved and have fun.
We have lots of equipment to help Maria do the things her muscles are too weak to do. She uses her ventilator (breathing machine), connected to a mask on her nose to help her breathe. She uses a special wheelchair to get around. And she uses a suction machine to prevent her from choking. None of these machines hurt Maria, they help her. Because Maria’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 Maria’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 Maria 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 questions/conversation we usually hear and our typical responses to help make you more comfortable discussing Maria with your child:
Child: Look (pointing at Maria to show parent).
Samples response: Oh, that’s Maria. She goes to Queen’s too. Maybe you can be her friend.
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. Maria’s differences are just on the outside. But she’s a kid just like you.
Child: What’s on her nose? Can she breathe?
Sample response: That’s her ventilator, a machine that helps her take big breaths. It takes a lot of muscles to do that.
Of utmost importance, illness can be very serious for Maria. Maria’s disabilities obviously create many challenges and make her vulnerable to illness. 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 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 the teacher that a child is feeling under the weather so we can keep Maria home that day. Also, if your child receives the flu mist, the virus sheds for up to five days and poses a risk for children with neuromuscular disease. I would ask that the student’s in Maria’s second grade class that receive the flu mist to please inform Mrs. Walicki that your child has received it or when they will be receiving it so we can decide if we would keep Maria home for a few days.
Because of the severity of her disabilities, Maria has Judy and Roberta (LPN’s) accompany her to school every day. You will see them washing Maria’s hands regularly with antibacterial wipes. Although we are cautious about germs and colds, we want Maria 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 Maria’s hands afterward or offer a wipe to your child, but it is nothing personal.
Thank you very much for taking time to read this note. Please don’t hesitate to ask us questions; we are an open book.
All the best.
Mike and Jackie Church (Maria’s parents)