Down Syndrome Awareness – Babies Grow Up

Lately I’ve been reading through blogs and postings for October Down Syndrome Awareness Month.  Most have been by parents of babies or young children.  It’s a fun time.  You have a cute, cuddly baby, a sweet toddler.    It’s a scary time when you ask yourself, how do I raise this special child?   It’s a time of learning and challenges for parents.  To all these new parents I say one thing:  persevere.  It is so worth it.  When Andy was born 24 years ago,  I remember in our confusion and yes, grief, my husband and I discussed all the normal things our child would never be able to do.   We were so, so wrong.  Our child has well exceeded any expectations we had for his life.

I don’t claim to be the ultimate expert on raising a child with a disability and of course every child is different, but here’s my list of what I feel you can do to raise your child with Down syndrome to be a successful and happy adult.

• Start early.  My son Andy and I started Baby and Me sessions when he was six weeks old.  While my baby and I went to each session, I was the learner.  I learned what to expect about Andy’s developmental path, how to recognize problems, and how to use play time as learning time.  We continued in our county program through Baby and Me, Early Intervention and preschool.  By the time kindergarten age arrived, Andy was ready and was enrolled in our local school public school system where he continued until graduation.
• Get plugged in.  Locate resources in your community, from educational to recreational.  If your school does not meet your child’s educational needs, be the squeaky wheel until you get what your child needs or find another school that will.    Determine your child’s strength and interest, whether it be music, art or sports and find a way to get them involved.   Local boards of developmental disabilities, county park systems, YMCA, arts associations all offer programming for persons with disabilities.
• Network and communicate.  I learn so much from talking to other parents.  Professionals are a big help of course, but information from parents whose children were older than Andy helped me know what to expect and gave me hope when Andy’s development seemed agonizingly slow.  I remember remarking to one parent about how well developed her son’s speech was, feeling discouraged that Andy was so far behind in that area.  She knew Andy and said be patient, he will get there.   And he has.
• Have high expectations for your child.  This does not mean berate your child or yourself if your child fails to achieve a set goal.   However I have found that your child may surprise you by meeting goals that you may think are unrealistic.  It’s not failure if the goal needs to be reset.  It’s just a new goal.
• Don’t forget that each child is different.  There are times when I read about people with Down syndrome who do amazing things or are at a higher level than Andy and I ask myself, did I push him enough?  Do your best to help your child reach his or her own best potential but don’t worry if he or she does not measure up to another child.
• Teach your child appropriate social skills.  From the time Andy was diagnosed we knew his best hope for a good life would be to have appropriate social skills.  This has proven to be one of Andy’s strengths.  It will make your life easier too when you can take your child to church, restaurants, museums, on an airplane, and to social functions and outings without disrupting the enjoyment of those around them (including you) with inappropriate actions.
• Help them learn independence.  We wanted Andy to be as independent as possible so as he grew older we gave him freedom to choose his own clothing, activities and to be home alone for longer and longer periods of time.  Than can be frustrating and has also been scary at times, but the benefit for Andy is tremendous.  And just like appropriate social skills, it has made our life easier.  It will also serve Andy well when he is able to live on his own.
• Lastly, have fun!  It’s so easy to get bogged down in therapies, IEP’s, ISP’s, doctors and diagnosis that you can forget you have a child who likes to giggle, play, and run just like other kids.  Do crafts and cooking, play in the mud, dig in the sand, let them care for a pet.  They will also have temper tantrums, meltdowns and moods.  It’s ok, it’s just like other kids.

It is wonderful that in the short 24 years since Andy was born that there are even more choices and chances for children born with Down syndrome.  Take advantage of all you can and your child will grow up to be a happy, successful adult.  If you have any questions or need help finding resources in your community, look up your local chapter of the National Down Syndrome Association, county board of developmental disabilities and your local school system.  You may also contact me through this blog.  Click on the Stories About Andy tab above if you would like to read more about Andy’s journey in life.

There are a lot of great adults who have Down syndrome.  If you are one or are a parent of one, feel free to add your advice/strategies for new parents in the comments.