If you had walked by Sunday afternoon and caught a glimpse of me sitting outside in the mountains with the sun pouring down on a circle of women alternately crying and laughing and clapping, you might not have been able to figure out what the thread was that bound us together. Some of us spoke another language and had to have a translator. We were of various economic, ethnic and cultural backgrounds. I am sure if you had asked about our politics or our religious beliefs that you would have found a wide range of answers. What brought us together was that we all had come to a retreat for families with children that have ID, or Intellectual Disabilities, put on by the ARC and ACL of Colorado. Some of us had children with autism. Others had children with Down syndrome, blindness, rare genetic disorders or cerebral palsy. And despite all of our differences, this one commonality of having a child with a disability was more than enough to connect us. We were sitting in a circle of women because we had been separated from the men in the group and brought outside to connect and discuss what we were bringing away from the weekend we had spent at the Families in Action Retreat at the YMCA of Estes Park. It was quite emotional as it had been an amazing weekend. When my family arrived on Friday night we were welcomed in to dinner by the sound of a band energetically playing "Stray Cat Strut" while people of all ages and abilities danced. Later several people mentioned that the sight of an older woman dancing joyfully with her 30 year old son with autism that night had given them a sense of hope that there might be joy in their own future. Saturday morning we met with childcare providers who came and took our children for the day. For some parents this was the very first time they had trusted someone other than family or hospital staff to take care of their children. Each child had been carefully matched with a volunteer who had the training and ability to care for all of the child's special needs. It was a much easier transition than we had been prepared for, and soon we were sitting in a conference room waiting for what we thought would be a series of rather dull presentations. We were delightfully surprised. The first speaker was a 96 year old woman who had raised her twin autistic boys and started an ARC chapter in the fifties. Her story of struggle and triumph was so inspiring there was not a dry eye in the house. We hardly thought it could get better than that, but every presentation was just as good as the last. Even the talks on topics like legislation and employment turned out to be riveting. The mom of an autistic son walked us through the steps she took to amend a law that would have cost her family, and thousands of families like her, needed therapies. The father of a boy with Down syndrome described how he took over the chain of ARC thrift stores and improved productivity and profits by increasing the percentage of employees with disabilities to 15% of the company. Another speaker talked about the importance of bio-diversity, and how she had talked to her own son about his autism. It was a pretty mind-opening talk. Often when we think about diversity we think of people of different ethnicities and genders, but people of different abilities are an important part of diversity too. And the reality is that we all have different abilities, and we all benefit from a culture of inclusion and acceptance. One of the speakers was a woman I know well, Anna. In addition to her role as a parent liaison of our school district, she also leads a monthly writer's workshop for special needs parents that I'm a part of. She brought in her daughter who has learning disabilities to speak, and her daughter made it very clear that she would rather be helping out with childcare. (Which I personally found very sweet since she was helping to take care of my youngest son Benny.) Anna then shared her own parenting journey of raising a child with a disability. She described the process of advocating for her daughter and how it evolved into her daughter advocating for herself. She talked about the challenge of letting her daughter struggle, knowing that by helping she would be taking away the opportunity for her daughter to grow her independence. At the end of the talk my husband said that it sounded a whole lot like our experience of parenting our older "typical" child. Anna laughed and said "You caught me! It's just plain parenting, whether your child has a disability or not." The woman we had all seen joyfully dancing with her 30 year old autistic son on the first night gave a talk on caring for the caregiver, followed by an hour-long break, with childcare. There were many fun things we could have done, but in the spirit of self-care my husband and I took a much needed nap together. That night we participated in some fun activities, my favorite of which was eating s'mores by the fire. There's something about s'mores that always makes me happy. In the morning our final talks were on navigating the school system. It gave me the opportunity to ask a question that had been on my mind for some time. "Why is inclusion important?" Ever since we've entered the world of parenting a child with a disability I've heard a lot about inclusion, but I haven't entirely understood why it's such a big deal. I could tell my question evoked a lot of passion as several people asked if they could contribute to answering my question. The first person who spoke talked about the difference between mainstreaming and inclusion. Mainstreaming is just putting a child in a classroom whether they can follow along or not. Inclusion is modifying the instruction so that the child can follow along. Inclusion has been documented to benefit everyone involved. Not only do the people with disabilities benefit from inclusion, but everyone in the classroom does as well. This is also true of inclusion in the workplace. The benefits are not just the measurable ones like higher test scores and increased productivity, but the intangible ones as well, like morale. When people with disabilities are included, it creates a culture of tolerance. And people feel happier. And the more children who grow up alongside people with disabilities, the more they will be comfortable with differences. And these children are our future legislatures, our future doctors and lawyers. It was during this conversation about inclusion that it hit me that I have a great responsibility. Not only do I need to advocate for my son as he grows up, but I need to be an advocate for all people with disabilities. It's a civil rights movement that is continuing to be fought, and still has a long ways to go. This sentiment was echoed by many in the women's circle later that day as we sat in the sun and shared our thoughts. We spoke different words, but the messages were the same. "Now I know that I am not alone. Now I have hope. Now I understand how important it is to teach others about diversity. Now I am ready to fight for my children. Now I am ready to fight for all children."
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April 2022
AuthorSince becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy! Categories
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