What Will Life Be Like for Your Child with Down Syndrome?

Thanks to many parents that have been before me, parenting a child with Down syndrome, we can stand by our kids today and raising them in our homes. The loves for these amazing humans give us the courage to fight for them to have a place in this society. Today, we are changing people minds, including doctors. There are still many doctors that need to learn how to give the news to expectant parents about their child's  genetic disorder. Howsoever, some doctors are going beyond the norm and respect the lives of individuals of Down syndrome.

The first thing, we all do as soon as we get the positive results for Trisomy 21 is going online and absorb all the information available possible. I did it! I don't regret. Howsoever, I wish when the news was giving to me that the doctor  would give me a beautiful welcome pack with real stories of kids with Trisomy 21 as well as a list of Parents support group because the true experts in this matter  are the parents. Today, our local Down syndrome has make this possible for new expectant parents and Tommy was in the cover of the firts welcome pack distributed in the metropolitan area in 2009.

More and more Doctors are understanding that individuals with Down syndrome are not a second category citizens, that they have the same rights to enjoy life as everybody else. One doctor who truly understand this is Dr. Linda Crnic. She devoted all her knowledge on pediatrics and psychiatry for the benefit of improving lives of kids with Down syndrome, which gave her a good international reputation for her research in Down syndrome. Unfortunately, her life got short due to a tragedy biking accident on September 11, 2004. Howsoever, her input and passion to improve the quality of life of kids with Down syndrome staid to inspired others, which made possible the creation of Linda Crnic Institute for Down syndrome in 2008. The institute is part of School of Medicine, University of Colorado Anschutz Medical Campus.

Currently, the Linda Crnic Institute for Down syndrome is the top leading research organization dedicate to Down syndrome. Dr. Tom Blumenthal is continuing Dr. Crnic legacy and he is working really to improve cognition and health issue in kids with Down syndrome. 

"The avowed purposes of the Crnic Institute are to “eradicate the medical and cognitive ill effects associated with Down syndrome by the year 2017” and “to significantly improve the lives of all people with Down syndrome and their families and their communities.” Our intention is to accomplish those goals, but when exploring the unknown, one never knows what lies ahead. Explorers can’t promise anything, except that we will do everything we can to accomplish the mission. It is time for research to start benefitting people with Down syndrome, and there is reason to believe we can accomplish this..."

If you are expectant mom or dad, I want you to know that there is hope and science has the clue in how improve our kids outcomes and quality of life. I want to share with you:

"What Will Life Be Like for Your Child with Down Syndrome?by Linda Crnic Institute for Down syndrome* 

• The life expectancy for individuals with Down syndrome is 60 years of age.

• Most individuals with Down syndrome finish high school, and many complete a transition to work program or go on to attend community college. Some individuals with Down syndrome complete a four year college and the occasional individual with Down syndrome attends graduate school. 

• Self-advocates with Down syndrome describe their life and their achievements using power point or speak from notes.

• Work placements for individuals with Down syndrome are less likely to include sheltered workshops and more likely to be in contact with the community.

• Many adults with Down syndrome live independently, either in group homes, with roommates or with their spouse.

• Experts in education for individuals with Down syndrome stress inclusion with typical peers beginning in preschool, and continuing through elementary school, middle school and high school. The performance of both typical children and children with Down syndrome improves with inclusion.

• Children and youth with Down syndrome should be offered the opportunity to participate in sports, dance, theater, music and art. Participation will help these individuals to develop friendships and self-confidence.

• As parents, you will need to be strong advocates for your child with Down syndrome to ensure that he/she will be able to reach his/her potential.

• As parents, you will love your son or daughter with Down syndrome and you will be proud of them. You will feel that your outlook on life will be more positive because of them. You will feel that your typical children have a good relationship with their sibling with Down syndrome.

• Your typical children will love their sibling with Down syndrome and will be proud of them. They will think that they are better people because of their sibling with Down syndrome. They will be committed to their sibling with Down syndrome and remain a part of their life through adulthood.

• Your child with Down syndrome will be happy with his/her life, like who they are, and like the way they look. They will love their parents and their siblings. They will make friends easily. They will have similar hopes and dreams to those of your typical children.

• Your child with Down syndrome will look more like their parents and siblings than like other children with Down syndrome.

• Each individual with Down syndrome is unique and has particular strengths and talents.

To see what life is like for individuals with Down syndrome, please check out the following links to websites:

• Karen Gaffney Foundation

• Self-Advocate Council (SAC), National Down Syndrome Congress

• Self-Advocates and National Down Syndrome Society

• Suj's Site..."

I highlighted the bullet point above because the unawareness that exist world wide about the possibilities that some kids with Down syndrome can achieve educational standards as their typical peers. The key is to find the proper treatments that can facilitate physical, emotional and cognitive growth. Howsoever, there are not proper treatments developed for our kids yet.  

Due to son's coexistent conditions, things are harder than just having Down syndrome alone. But I won't stop fighting for giving him the opportunity to reach his true potential because he is my son first and the labels are second. Nobody can give me a lecture about Down syndrome or Autism because I live it 24/7 all year around. Parents should know that there is more that neuroscience can do for our kids and we need to work together, doctors and parents, for a better outcome and quality of life of all kids with Down syndrome. The work we have ahead of us as parents is enormously, but not impossible. We will keep breaking the paradigms that surround our kids.