As a parent of a child with Down syndrome I am often asked how this condition has affected our family. I tell them that having a child with Down syndrome is not much different than having any other child (a). We spend our days drawing, reading, and laughing together, as Jayme’s interests are similar to other infants his age. Other days are challenging, speckled with arguments and high-pitched hissy fits as he defies our limits. But overall, he grows up learning about the world and his place in it similarly to any other typical 3 year old.
As a family we are able to celebrate many of the same milestones that other children reach as they develop, however Jayme arrives there at a delayed rate when compared to his normal peers (b). Jayme sat on his own at eight months and crawled at fifteen, setting him 6 months behind his same-aged friends. We welcomed his first step with balloons and cupcakes at the age of 23 months and immediately began “childproofing” the house. While these delays can be frustrating, it has taught us to appreciate his accomplishments and admire his persistent hard work.
Jayme’s medical conditions have awarded us close relationships with much of the hospital staff. We have learned to not take seemingly harmless coughs lightly, and to be over cautious when it comes to Jayme’s health because with his compromised immune system we cannot afford to assume that throw up or perpetual headaches are only temporary.
In the beginning we spent a lot of time researching Down syndrome as thoroughly as possible. The initial diagnosis came as a terrifying shock because all I knew about Down syndrome was the negative stereotype that plagues our culture. The best way to understand and manage Jayme’s disability was seeking information and advice. My husband and I gathered information from a myriad of sources including professionals, other parents, adults with Down syndrome, articles, and websites. We utilized http://www.familiesexploringdownsyndrome.org/services.html to locate parent-to-parent peer contacts. These relationships offered understanding, support, and encouragement while we raised Jayme (c). Many hospitals have a Down syndrome center that employs doctors who are knowledgeable about the condition and have current advice and information for parents. I often visited http://www.downsed.org/en/gb/families/ to get information about conventions and workshops focusing on Down syndrome. At http://www.downs-syndrome.org.uk/information/family-support.html I learned about Early Support (d). Early Support is a government initiative to coordinate and improve services for disabled children. It produces a plethora of resources for parents. Every city is required to provide services for children “in need” (Down syndrome qualifies). Instead of receiving services from the city, we opted to receive a direct payment in order to pay for support we arranged independently. I took my entitled breaks each afternoon when I dropped Jayme off at a specialized daycare. I contacted the school to learn about the special education they offer children with disabilities.
Although the government funds helped offset some of the costs of assistance, the daycare and routine doctor visits became costly over the years (e). Despite the financial setbacks I must reiterate how lucky I am to be Jayme’s mother. Before Jayme was born I would have not asked for this path, and while I did not always view Jayme in such a positive light, I have come to appreciate how much I have loved every step of this journey (f). In the beginning I considered Jayme to be defective, I perceived him as a burden and an unlucky twist of fate. However, Jayme quickly showed me that it was I who was flawed. His endless love and genuine zest for life taught me to appreciate the important things in life. His determination made me burst with pride at every accomplishment, his curiosity inspired me to always be hopeful and optimistic about tomorrow, and his pure love made me feel like the luckiest mom in the world to be able to hug him each and every day.
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