Supporting a Down Syndrome Diagnosis
A little over twelve years ago I welcomed my fifth child into the world who happens to have Down Syndrome. It became apparent to me very early on that I would have to do more and be more to meet my son’s needs that were unique to him. If I were state side during his birth, I would have had many more options early on. There is the First Steps program that is available in each state that help children with disabilities and developmental delays. The program starts at birth to 3 yrs. and includes help with physical and developmental needs of a child.
Not having access to First Steps I depended a lot on books and my own creativity to help his physical development. Some of the books I depended on early on were “Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals by Patricia C. Winders” . “Fine Motor Skills for Children with Down Syndrome by Maryann Bruni” and “Babies with Down Syndrome a New Parents Guide by Susan J. Skallerup”. These were my go-to books that were well used. I was able to learn not just what to expect from my child but also how to help and support him in his development. Some of the help required my own creativity and using some simple objects for both fine motor skills as well as gross motor.
At a point in his development I saw that language would be his bigger hurdle. Physically he developed about the same rate as peers his age, but the ability to speak was a struggle. The understanding of language was there but getting it out and able to express it was the problem. He would be latter diagnosed with apraxia and the tools to help him greatly changed as he grew. Early one we focused on sign language which is a great resource for any young child to express their needs and wants. Signing Time was the best resource for the whole family. There are many videos of various themes that can help a child easily communicate their needs to those around them. The downside of this is that whoever they are communicating with also needs to know sign language.
As he got older, we received a communication device from his school district. There are a number of dedicated devices just for communicating. Some of these devices are in the thousands of dollars but there are programs available to help aid with the cost. But thanks to technology advancing it's much easier to buy an iPad and download an app to help a child communicate with everyone around them. There are many to choose from and much of it depends on what the child is most comfortable and what will grow with their age and ability.
One of the things I decided early on is that my child will determine his capabilities. I would never limit him due to the preconceived notions of what he should be able to do. While he was younger and very active, I signed him up for sports with his typical peers. I found that most parents and other children were very accepting because, although different in some ways, he was still very much a child of their own age. As he grew and the competitive nature of his peers kicked in that is when we sought programs by special needs groups. Locally we have several such as Special Olympics, Special needs soccer association, TASK and horseback riding programs. There are many ways to get a child who happens to have special needs moving.
Through the years it was vital that I also learned how my child learned. Even as the fifth child I was very much surprised how my child's diagnosis would impact the way in which he actually learned. A huge help for us was The Maren Fund. Which is an awesome program that not only assists children with Down Syndrome to learn but also teaches parents, and those who are involved with their learning, how the children actually learned. There is much research out there that shows that it is much different than their typical peers so the best manner to teach them is to teach ourselves a different approach.
There are many resources out there to help aid parents with the raising of their child with special needs. Even as they age support will need to be given to them. So, it is imperative that parents seek out all that is available and be their foundation of learning and development. I cannot stress enough the importance of that foundation and the willingness to help your child to continue to grow and reach all of their capabilities. It truly starts from day one and will continue for as long as they require it. This path has been quite the blessing I will say. I have learned so much from my son in this short 12 years and I look forward to the growth of what we will both continue on.
Ann Tamimi wife and mother to five. Avid reader, scrapbooker and has large diy fantasies.
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