-Written by Dr. Stan Paz, Ph.D
Ale, my granddaughter, was born on November 3, 2012 in El Paso, Texas. She was welcomed by her loving mom, dad, and adoring family. Her arrival sparked an awakening for us all. This is the story of a family who was blessed with a child with special needs.
Our story of caring for a child with special needs is not unique. The journey begins during the pregnancy for some or at birth and beyond for others. Mothers and fathers speak of their awakening to a myriad of feelings and emotions. Their personal struggles and heartwarming thoughts are truly inspirational.
In El Paso, Texas, the number of children born with Down syndrome is slightly higher than the rest of Texas. So, not surprisingly, the need for special services from the community, neighboring cities, and the government is great.
However, when I look back to just seven years ago, young children and youth with special needs in El Paso struggled to receive the health and educational needs that they have today. Families were left to fend for themselves with no support system readily available. They did not have access to the short-term or long-term resources that they have now. Furthermore, there was no community to turn to when frustration and desperation invaded their psyche, leaving families hopeless.
As Ale progressed developmentally, it became apparent that the earlier she could begin her education, the better. We searched for an appropriate preschool; however, no such place existed! So, Ale’s parents began working with their network to create a solution. After many hours, meetings, and research, their perseverance paid off and Every Little Blessing preschool was launched in 2017, modeled after Texas Christian University’s Kinder Frogs School. At Every Little Blessing, children now benefit from a curriculum licensed by the state of Texas, striving to meet the highest standards.
What was a void seven years ago is no longer. Now in El Paso, a community has evolved. When a young family learns that their newborn baby has Down syndrome, they are met by other parents facing similar circumstances.
Today, Ale’s mom and dad graciously volunteer to deliver welcome gift baskets to young families. They visit parents and offer words of reassurance that they have a loving and supportive network of children with special needs and their families. This network is the Down Syndrome Coalition for El Paso (DSCEP), where any medical or educational question is answered by phone or email.
The DSCEP was founded in 2015 with a mission to create a path to a brighter future for children with Down syndrome. The volunteer Board of Directors are dedicated parents who provide resources and support to individuals with Down syndrome and their families. Also, what began as a simple, family festivity is now an annual fundraiser for the DSCEP, called The Whole Hog fundraiser. It is an homage to those celebrations when we came together on special weekends with a whole butchered pig to throw a big fiesta with good food, blaring music, and the whole community rallying together. While El Paso is not a wealthy city, the tremendous generosity of the community has led to tens of thousands of dollars in donations. None of this could have been a reality without the special community that organizations like the DSCEP was able to form. Such is the power of community.
This story of Ale and the evolution of DSCEP is one of hope and encouragement. We saw the need to build a strong community for children with special needs and their families, and we can proudly look back and say that our dreams have become a reality.
Just like DSCEP, there are many more organizations out there with the ability to build a stronger support network and community for parents and families caring for children with special needs. We must invest in more of these organizations to ensure that stronger communities exist for these families. Education is a building block to our children’s future, but it cannot happen without a community.
Former Superintendent of El Paso Independent School District and Tucson Unified, Dr. Stan Paz is a strategic advisor and thought leader on the Swing Advisory Board. Dr. Paz is currently the Executive Director for the Texas Association of Latino Administrators and Superintendents (TALAS).