Katherine Mills, Kalamazoo
It’s funny how God chooses to fix things that are broken in your life. He has used my daughter (who rocks an extra chromosome) to help transform me into a much better version of myself than what existed only 6 short years ago.
Had my children been born calm, compliant and average, I probably would have been one of the first parents to question why children who were not like mine could be included in classrooms and activities. That, however, was not the case and I was given children who would be considered “energetic”, “in need of redirection”, and “exceptional” (if we are stating things nicely). I am now a huge advocate of inclusion. How will my kids learn to behave appropriately in social situations if they are not given many opportunities to observe and participate? For this reason, each summer, I have signed my daughter up for many Vacation Bible Schools and camps that are not specifically intended for children with special needs.
In years past, I would just sign her up and drop her off without letting anyone know she had special needs. For one, I didn’t want them to turn her down sight unseen, but I also didn’t want them making assumptions about her based on a diagnosis. This caused a lot of frustration on their part and a lot of tears from what felt like rejection and exclusion on mine.
This year, on registration forms I added her dx, a few helpful hints, and a “please call me with any further questions”. They, however, did not call with further questions and our first VBS of the year was off to a rocky start. The leader of this VBS was, however, committed to making things work for us. I quickly worked to provide them with a full range of tools that helped us finish the week on a strong note. This mostly involved taking what worked for her in the classroom last year and making it portable.
A list of expectations of both my daughter and the leader (most ideas credited to author David Stein):
Presume competence – My daughter is smart. She knows to test the waters and see how much she can get away with because this isn’t her first rodeo and she’s gotten away with a lot in the past. When people with limited experience with kids who have a visible disability see them walking through the door, they don’t know what to expect of them. “Should I carry them everywhere? Are they able to follow directions?” I’ve realized that it’s my job to let them know.
What can they do to redirect poor behavior and promote positive behavior? – For my daughter, using “first/then” is huge. If she is having trouble attending to a task, letting her know that there is a different activity coming up soon, but that she must complete her current task first is HUGE. Her classroom teachers have also had great success with visual cues, so we also provided a lanyard with familiar pictures for actions like “sit”, “quiet”, “walk with the group”, etc.
Motivators – No one works for free. They either expect a paycheck or a feeling of satisfaction at the end of a day’s work and my daughter isn’t any exception. Something as little as an “emoji” stamp can go a long way in building positive behavior momentum. On the back of the lanyard we also provide a “happy/sad” card to help her understand how her actions are making her teacher feel. If the teacher reports that she mostly stayed on happy, then my daughter gets a predefined reward when she gets home.
Attitude – We can’t feel guilty or ashamed for asking people to stretch their understanding for our kids. When meeting my daughter’s 3rd VBS leader (the first two were young teens who didn’t think they were up for the job), she made the comment that she felt *I* should be the one staying with her and not her. It was a hurtful and frustrating comment that made me feel, among other things, trapped in the life of a parent of a kid with special needs. Fortunately, or unfortunately, I’ve had a lot of practice responding to comments like these and I replied by calmly and confidently smiling and saying, “I understand where you are coming from, but she needs to learn how to behave away from me and I can’t think of a better way to do that than by giving her access to places that her peers are welcomed. Also, you don’t ask any of these other moms to stay with their kids, right?” I don’t think she had considered that point of view before and thankfully the woman was very receptive to my response and seemed to understand fully what I was saying.
Consistency – I think that the presence of the visual materials (lanyard) carried by the leaders goes a long way for my daughter in legitimizing their authority as well as giving her the comfort of something familiar.
Despite the rocky start, we ended on such a successful note that I decided to preemptively reach out to the rest of the places where I had her signed up. I made a phone call to the Kalamazoo Nature Center to explain our situation. The director there was clearly already committed to making camp “the best week ever” for all kids, including those with disabilities. I sent her an email with pictures of the lanyard, along with suggestions. They put her in a group with a strong leader and she rose the occasion. She felt so valued and included. It really was “the best week ever”!
There will always be people (probably similar to the “me” of 6 years ago) who are just not willing to make inclusion work, but when we meet them we lick our wounds and get back up and try again.
In the end, when inclusion works, everyone wins. The leaders see the capabilities of a child with Down syndrome, the other students see that children with disabilities do belong in society, and my daughter has one more social experience (without mom) under her belt. We shall see what the rest of our summer holds!