Why World Down Syndrome Day Is Special to Me

I write this post in honor of my daughter Grace and for the many mothers that walked before me paving the way for my daughter and all people living with a disability.

My life changed the day I was told my child would be born with Down syndrome. The things that bothered me just hours before no longer had a place in my life. When Grace was born our family transformed and we become more caring and accepting individuals.

I struggled this year to come up with a story to share on this very special day. I felt like I knocked it out of the park last year when I wrote about women who were close to me and who inspired me. It didn’t come to me till I was photographing a very special little boy named Remy. So to Remy and his Mama I say thank you for opening yet another door of opportunity and wisdom by introducing me to Josephine Lapp.

I am sharing Josephine’s story not because she is a mother of a child with Down syndrome. I am sharing her story because she was at the beginning of the movement of acceptance that started more than 50 years ago. She stimulated change in our community and for our world by not taking no for an answer and pushing through fear to find opportunity for her daughter. Today instead of hiding our children we celebrate them. We celebrate what makes them unique and for that I am forever thankful.

Josephine (Jo) is a mother of three children, two girls and a boy. She is 97 years young and still advocating for Tina, her daughter who was born with a brain injury. Sixty years ago Jo was told by the Catholic school Tina attended that she was not able to keep up. They suggested she be put into public school where there were resources. When Jo inquired with the public school she was told that her daughter had to be reviewed by a psychologist in order to receive special education services. The psychologist had not been out to that school for two years.Jo took matters into her own hands and used political contacts to get someone to review her daughter’s case as well as the many other children waiting for an appointment. All the children were reviewed within two days and the only child rejected was Tina. She was devastated, as any mother would have been, to be told that her daughter was not capable of learning.

That did not stop her.

Even though she felt lost and abandoned by the system she discovered a local organization calledThe Garden Center. She found herself attending a board meeting consisting of men. Yep, she was the only women in the room. As the meeting ended, the local non-board members exited the room and she spoke up. She asked how much money the school had in their fund. The men in the room looked at her like she had lost her mind.She asked them again how much money was in the fund. They finally told her $5,000 and she proceeded to tell them they needed to build their own school. She asked for volunteers to help organize the plan and when no one raised their hand, she appointed men to find land, create budgets and build designs. Within a week, volunteers were stepping up to help. Months later the building was finished and their children had a school.

Once the school was finished she proposed a residential faculty because of the growing concern of aging parents and students. Within a couple years she had the residential home right next door built by 100 percent donations of time, money and skills. Fifteen students had their own rooms while sharing a living room, kitchen and multiple bathrooms. Now Garden Center services hundreds of day program participants and houses 75 residents in a home environment.

While I was sitting in Jo’s home I could not help but be humbled by her strength and her determination. Even now at 97 she is concerned about the residents that are now senior citizens. She wants a plan in place for the aging and has created a beautiful idea in her head that will make the Garden Center even more magical then it already is.

One thing I have realized this past year is that it does not matter what disability you are dealing with, or what obstacles you have been dealt in your life, it is what you do with your time. It is what you make your passion. Those two things can be life changing for yourself and so many other people.

Jo is an inspiration. When she was told by a respected doctor that her daughter was not capable of learning she cried and then she stood up and made a change. That change paved the way for my daughter and your child. She made sure that there was opportunity for our children to live semi-independently with their peers and their friends. She found a way to teach them life skills and give them jobs. Before schools like this children with developmental disabilities had very little opportunity.

I asked Jo as I was leaving if she had any words of wisdom for parents who are walking alongside their children. She told me that she would tell them to spread their love around to all their children. She encouraged me to let all my children know how much I loved them and to spend time with my husband to show him the love he deserves. I love that. She is all about working hard and loving hard.

As we celebrate the extra 21st chromosome today I will remember to not only “Rock my Socks” but to continually spread myself to my family as well as to the world.I will stand up for what I believe in. I will encourage others who are doing amazing things just like Jo Lapp and I will help because there is a lot of work left to do. Jo and her friends started something great and it is our turn-it is our responsibility-to support it and nurture it into something even greater.

The sky is the limit for individuals with Down syndrome and we will not accept anything less. I am proud to be a parent of “Differently-abled” children! Their strength and hard work inspire me every day. So I am asking you all to take that time to get to know someone this week with Down syndrome. Answer them when they greet you with a “hello.”Look at them in the eye and shake their hand and don’t forget to wear crazy socks on Thursday to celebrate with us!

I am closing with a beautiful video produced by the IDSC in honor of our loved ones.Our loved ones rock! We are lucky to walk next to them on their road of life. This video explains who they are and why their life is valuable and important not only to their families but to our world.

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