Congratulations

“I know your baby can have a wonderful life, like me” – Bridget, PALS Camper

The Congratulations Project is a movement towards changing our approach to the birth of babies with a disability, specifically babies born with Down syndrome. When a baby is born, or diagnosed during pregnancy, with Down syndrome parents are provided coping strategies, given statistics, options and told “I’m sorry”. The Congratulations Project moves towards seeing parents expecting a new baby and greeting this with “Congratulations”.

“I feel like we’ve been on an island this whole time and we just received a message in a bottle.”
— Letter recipient

The Congratulations Project is an initiative of the PALS Programs organization. This organization promotes transformative friendships, inclusivity and acceptance. The concept is simple and the impacts are endless. PALS began an initiative named The Congratulations Project to further spread the experience of those involved. Each week at camp, participants (teens and adults with Down syndrome) spend a few hours writing letters for The Congratulations Project. Authors are encouraged to writer about their lives, their hopes, their dreams. The only requirement for letters is that each must begin with “Congratulations”.

“Your baby will encompass a multitude of amazing qualities. They will change the world.”
– Abigail, PALS Camper

I have been involved with PALS Programs since 2015. I have seen countless letters written and felt the joy and authenticity of each. My sister, Emily, was born in 1996 and to fully understand the value of The Congratulations Project it’s important for us to truly understand the realities of having a child with Down syndrome over the years:

Historically in the U.S., the majority of people with Down syndrome and other intellectual or developmental disabilities were placed in inhumane institutions deprived of education, healthcare and even food or plumbing. This treatment continued until the 1980’s-1990’s. There were physicians in the US, as late as the 1980’s, who categorized feeding a baby with Down syndrome as a “lifesaving procedure” and would allow these infants to starve to death. This remained practice until all 50 state governors created legislation banning this practice, which took years.

1993: Just three years prior to Emily’s birth, Holland v. Sacramento City Unified School District reinforced that it is a right for disabled children to attend public schools alongside children without disability.
Imagine birthing a child and not knowing he or she would be allowed to attend school or be granted an appropriate education.

1995 – Helen L. v. DiDario ruled that institutionalization of a person, when it is not medically necessary or when home-care is an option, is a violation of the individuals constitutional rights.
This was the de-institutionalization movement. When Emily was born in 1996, individuals with Down syndrome were still largely placed in mental institutions at birth. This had these infants without human contact/connection, minimal time outside, were deprived food and had no mental stimulation.
Imagine birthing a child and being provided this as an option at birth, to give away your child because they were not worth taking home. This was only one year prior to Emily’s birth. There remained a stigma and shame with birthing a child with Down syndrome not only within the medical community but in our society.

2008 – The Prenatally and Postnatally Diagnosed Conditions Awareness Act (S. 1810) was passed by Congress. The Act states that families who receive a diagnosis of Down syndrome or any other condition will be offered up-to-date and accurate information about the condition and will be connected with support services to offer assistance.
This helps move towards a more realistic outlook of individuals with Down syndrome, allowing for parents to feel hope for their future and their child. However, this has not eliminated the practice of providing parents their “options” including termination, adoption and grieving.

2010 – President Barack Obama signs Rosa’s Law (s.2781) requiring the removal of the words “mental retardation” and “mentally retarded” from federal laws.
This was the first formal movement towards removing the R-word from our everyday language.

Understanding what was taking place in our society helps to understand the meaning behind the movement. Having a baby with Down syndrome throughout the 90’s and into the 2000’s was not met with smiles, balloons, and a congratulations; rather it was met with numbers, fear and shame. Mothers were often greeted with an “I’m sorry” and provided options on terminating pregnancy or adoption. In parts of the world, genetic testing was no longer utilized as a means to prepare for birth but as a way to eradicate certain conditions, one being Down syndrome. Up until 2011, termination rates in the United States hovered at 67%, in 2015 France termination rates were at 77% and Denmark had a 98% termination rate. In 2017, in Iceland, nearly 100% of women who received a prenatal diagnosis of Down syndrome terminated their pregnancy. There are now only 1-2 babies born each year in Iceland; geneticist Kari Stegansson (founder of deCODE Genetics) has stated “my understanding is that we have basically eradicated, almost, Down syndrome from our society — that there is hardly ever a child with Down syndrome in Iceland anymore,”
this was only three years ago.

With these facts we are able to acknowledge the impact of an initiative such as, The Congratulations Project. As a reminder, The Congratulations Project is an initiative where adults with Down syndrome write letters to new and expecting parents of a baby with a Down syndrome diagnosis. These letters are designed to inspire, encourage, welcome and, most importantly, congratulate new families. They all begin with the same, simple message: Congratulations. Each letter is handwritten by an individual with Down syndrome while at PALS Programs. Our letters are packaged and sent to families around the world to bring hope and share joy.

After the program, letters are scanned into a database and paired with a photo of the author during their week at PALS.  When requests are received, a letter is chosen and packaged with a handmade PALS bracelet, and a “Future Camper” onesie that entitles the recipient to their first week of PALS for free. Over 700 individual letters have been mailed across 48 states in the United States and seventeen countries worldwide.

“Being born with Down syndrome is a privilege, so always tell them that they are an inspiration and special to make them happy”

– David, PALS Camper

Further, in 2018, The Congratulations Project book was published. This is a compilation of letters and was released on World Down Syndrome Day in 2018. These books are used by families but also as a resource for genetic counselors, hospitals, OBGYN’s and more. When facilities have a Congratulations Project book to provide to families receiving a diagnosis it alters the process for these expectant parents, it provides laughter, it provides love and it provides hope. These letters and the book itself are a source of inspiration to anyone who picks it up, it’s shared within the Down syndrome community however it’s impacts are limitless.

“It gave me so much hope and strength when I was still trying to figure out what Down syndrome would mean for our son. Thank you for giving me that first glimpse into what a great life he will have.”

— Letter Recipient

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