Over the years, some families have approached us after presentations and reported they couldn’t relate to a story or a point we made. We have found that it was typically a family of a younger person with Down syndrome whose experience was different from the family of an older person with DS that we had discussed. We call those differences the “Two Syndromes." We think the differences are primarily based on four main areas: expectations, life expectancy, opportunities, and goals.
We have heard from families that they were told at the birth of their son or daughter with DS to “Put him in an institution, tell the family he died at birth, and never look back.” When these families brought their son or daughter home, the opportunities for the individual were about as bleak as the advice. So what did these families do?
Many of them did a wonderful job at home all on their own. Others took additional steps:
If they wanted better health care, they encouraged and supported physicians and hospitals to provide better care. They provided information, they provided parent support networks, and they participated in the development of clinics and other settings to improve health care.
If they wanted an educational program, they developed one. Several school programs in the Chicago area exist mainly because of strong family involvement and development.
If they wanted a recreation program, they developed one.
If they wanted a work program…out pounding the bricks again.
The list goes on.
Is there room to develop more and/or improved programs? Should we continue to assess and modify what is being done as we learn more? Should we work to better include people with DS in the planning and implementation?
Yes to all of the above.
Have we reached the pinnacle? Are there no more challenges? Of course not! But a successful approach by families is in place.
We think one of the strengths of the Adult Down Syndrome Center is that we have worked with parents and families from the beginning. The families know so much about their sons, daughters, brothers, sisters, etc. that we can’t experience in the office…and they have demonstrated their willingness to support, teach, and work with providers in so many arenas.
That is why the phrase is “Two Syndromes” and not “Two Families.” Whether it be starting a program from scratch when there are absolutely no services around, assessing and modifying existing programs, or starting new/additional programs, the overall picture is the same – love for the person with DS and a desire to see him/her develop as fully as he/she is capable.