Lessons Rachel taught me – Living with special needs children

At age 5 I came into my class one day and told my teacher much excitement that I had a new sister and she was 14. My teacher congratulated me and said, “Wow! She is 14 days old”. “No, she is 14 years old” I replied. My teacher nodded his head and continued on with his day not sure what to make of our conversation.</em>

What the teacher didn’t know and, being a 5 year old I neglected to tell him, was that my first foster sister had just joined our family. Rachel was a 14 year old girl with Down syndrome. She was given up at birth and for the first 10 years of her life lived in an institution. She then entered the care of JFCS of Toronto. Rachel lived with us for 8 years until she was 22 years old. After that, she continued coming to us for all the holidays and lifecycle events for the rest of her life. Rachel became part of our family on so many different levels.

On September 18, 2013 Rachel passed away in the evening, she was 44 years old. Over the past few weeks I have been thinking about my own experiences of living with Rachel, a special needs child. Growing up with a foster sister like Rachel enhanced my life and has impacted my development to make me into who I am today.

I wanted share some lessons that I have gleaned from my childhood and from watching my parents run a household where many children with special needs have found a home over the past 27 years. Each situation is unique. The fact that Rachel was a foster child as opposed to a biological sibling or child that has special needs presented benefits as well as challenges.

Lesson 1: Live Life

Rachel had the ability to bring joy into many situations, with her great attitude and humor. I remember many times Rachel sitting next to my mother who was resting after a long day, leaning over, giving a hug and saying “I love you Mom”. Special needs children can sense and read emotions just like everyone else, the difference is how they react. Most people sense that someone is upset or sad but don’t approach them because they don’t know what to say or are afraid to ask the wrong question at the wrong time. Special needs children and adults will respond with simple emotions showing pure love and care. Rachel with her joy (see the clip at the end of the article) and her ability to live life to its fullest at every moment shows us that we complicate life by over thinking situations. How many times could relationships between parents, children and spouses be saved if everyone would be direct, simple and clear in their communication?

Lesson 2: Include, Include, Include

One day, a friend of our family was playing with his band at a concert that Rachel was attending. She approached the band saying, “play the Yachad song, play the Yachad song”. The band started playing a popular tune with those words. She started shaking her head and repeated again “play the Yachad song”.

Rachel was referring to YACHAD, an international organization promoting inclusion for children &amp; adults with special needs in the Jewish community. Their theme song uses the words of Albert Camus, “Don’t walk behind me; I may not lead. Don’t walk in front of me; I may not follow. Just walk beside me and be my friend”. Watching how Rachel thrived being part of activities, family board games and of course playing baseball with everyone in the backyard taught me the importance of inclusion. The more we can include our special needs children in activities that “normal” kids participate in, the better. Not only does the special needs child gain from the inclusion but all the kids participating will benefit and learn how to interact with people that are different than them.

Lesson 3: Everyone’s Got Talent

At a recent memorial for Rachel my parents shared an experience that took place the first evening that Rachel joined the family. That evening at the dinner table Rachel announced that she wanted to show her brother and sisters a trick. We all were anxious to see what she would do. She slowly went to the front of the table and said watch this and proceeded to stick out her tongue and touch the tip of her nose. Our family just sat there taking in what just happened, and then everyone started clapping and giving Rachel high 5’s. I am not sure where Rachel learnt that this was a unique skill; if you have ever tried it (which I have many times) it’s really hard. Somewhere in her journey she was taught this was something unique and she was proud of her talent!

Rachel taught me that instead of focusing on how limited our special needs children are and what they can’t do, let’s focus on what they can do. Everyone has talents and our job is to discover what those talents are and bring them to the surface. This lesson applies to every child and adult, praise and an appreciation of our individuality are key components to our development.

Rachel’s lessons and life will continue to inspire me to see the best in everyone I come in contact with. Living with a special needs child is a gift that keeps on giving. My hope is that if you can implement these 3 lessons, Rachel’s legacy of joy, hope and happiness will inspire you daily in every interaction with your children, family and friends.

Click on the video below of my parents talking about their experiences living with Rachel

Living with a special needs child

David Gertz, MS, NCC