Allie Cowden is DSAWM’s long-time intern. While working in the office, she assists with mailings, puts together our new member packets, and lends a hand for programming set-up. Allie turns 26 this fall and in the coming year will graduate from school and begin her adult life. We asked her about this big change in her life, and how she is spending the year before she starts this new chapter.

What is your favorite thing to do during the summer?
My favorite thing to do in the summer is go to the farmers market in Ada. I get to sell lots of pies and cookies to people at the farmers market. My other favorite thing to do is go to the beach and hang out with my friends. I also like working at McDonald’s and Cookie Chicks. It’s fun working at both places. This summer I want to spend more time with my CLS worker and do fun activities together.

Have you traveled recently?
I traveled to Germany, Austria, Italy, and Venice with my family. We saw lots of castles and churches. When we were in Venice we took a water taxi and went to a few stores to shop. We had fun!

What are you looking forward to when you go back to school in the fall?
I’m excited to go back to my program in the fall. I’m looking forward to seeing my friends and teachers again.

How do you feel about your last year of school? What makes you excited? Does anything make you sad?
I am excited and sad about my last year of school. I feel excited when we do social networking events and when I hang out with my peers. I feel sad because when school ends I won’t get to see my peers very often.

What are your goals over the next year?
I want to be a self-advocate, cook new recipes, and learn how to use a grill.

What do you want to do after you graduate?
After I graduate, I want to be more independent and have more freedom. I want to get a house in Grand Rapids and keep working at McDonald’s. I want to take classes at Grand Rapids Community College. Someday, I want to become a public speaker.

 

 

 

 

 

Is your child also approaching 26? Check out our Transitions resource page for information about housing, transportation, guardianship planning, and more.

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!

Peyton Brill, Grand Haven

Down syndrome is something that many people struggle to understand. I’ve spent the last 11 years learning about it from my younger sister Chloe and there’s still so much more to learn. Over time, I have noticed how Chloe is constantly treated differently by others. I want to follow her and shield her wherever she goes, but that is just not possible. I have also become accustomed to mixed reactions from people when they learn that Chloe has Down syndrome. One of the hardest reactions to respond to is when people say “oh, I’m sorry…” as though Down syndrome is a burden. Fortunately, having Chloe in my life has taught me the importance of patience. Having patience keeps me from becoming angry at other people’s lack of knowledge and instead helps me to teach them about what Down syndrome really means.

When Chloe was about five, we went to Crazy Bounce and she was ecstatic, like a kid in a candy store. The slides were steep and slippery, but she was determined to get to the top. Years later, I still vividly remember Chloe working her way up the giant tiger slide. Ignorant teenagers began sprinting up behind us. One boy began making rude remarks about Chloe and her speed. I asked him to stop, but he in turn decided to shake the slide. As much as I wanted to go teach that kid a lesson, I just turned towards Chloe and followed her the rest of the way up. People with Down syndrome are often known for their unconditional love and so often I wonder how they manage it given the way they are so often mistreated. If the boy who made fun of Chloe had fallen, she would have been the first to run up and give him a hug, no matter how he had treated her, because that is just who she is.

Inclusion is getting better, but there is still a long way to go. Part of the reason I love camping with my family is because we can escape the small-town bubble where we spend so much of our time. Traveling with someone who has Down syndrome is thought by many to be a hassle. I will be the first to admit that sometimes the stimulation of visiting new places and trying new things can be a bit much for anyone, especially someone with special needs. When my family first got a camper, we had no clue how things were going to go, but there is no way to tell unless you try. For Chloe, our motor home has become a second home. It’s a place that she is familiar with and where she can return to if trying new things gets overwhelming. We have gone on all sorts of trips and Chloe has met many new friends. So many of the people we meet along the way are kind and open-minded. Kids from the campground will run up to our site looking for Chloe and they’ll all run off together to play. Nobody is born with the biases that are so often directed towards individuals with special needs. Seeing Chloe with all the accepting people we’ve met while traveling helps me to see that even though there are those who may try to break her down, there are a lot of people who will always support and stand up for her.

Throughout my life, I have been blessed to meet friends from my community with Down syndrome and they are honestly some of the most down-to-earth people I have ever met. At my school we have a program called POPS which stands for Power of Peer Support. The focus of the club is increasing inclusion in the school. Even simple lunches together can create great memories and show the value in small moments of acceptance, especially because people with special needs are so often left out. I have seen so many friendships form through this club and learned a lot about people who I did not know that well. Keeping a club going at school can be difficult. Many people are focused on more popular activities and are scared to try something new. Receiving messages from parents of students with special needs about how much POPS means to them and their child has pushed me to reach out and grow the club and inclusion in the school.

Recently, I ran an event called Buddy Games. During the event, individuals with special needs were paired with a buddy who stayed by their side and encouraged them as they practiced basic soccer skills like passing, dribbling, and shooting. Afterwards, a scrimmage game was held for everyone to participate in. Over 40 people participated and many of the volunteer buddies were students from Grand Haven High School. The event was totally eye-opening. Seeing inclusion on the field was just a small step towards eliminating some of the biases that people have about those with special needs. The smiles on everyone’s faces were ear-to-ear and you could feel the unconditional love. Chloe often asks to participate on school teams, but those teams tend to progress quickly and, while she is just as capable as everyone else, sometimes she needs the pace to be modified. Buddy Games was not only an opportunity that allowed Chloe and others to play on a sports team that fit their needs, but it also gave everyone who came the ability to learn about others who they perceive to be unable.

The hardest part of having a sibling with special needs is seeing the way others put her down. Learning to let Chloe work through this challenge on her own is difficult and I constantly find myself stepping in to guard her. Chloe is strong though. There are days when she completely amazes me in how she carries herself so independently and, through it all, with love.