1.Give your child a name and research the characteristics of the disability.
a.My son Noah is 7 years old and was born with Down syndrome. Down syndrome is the most common chromosomal disorder in the United States. For those who are unfamiliar with Down syndrome, it is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. Physical, medical, and cognitive characteristics are associated with this condition. Physical and cognitive features as well as medical problems vary in severity from person to person.
2.How does it feel to be the parent of your child?
a.Every day is a discovery, a difficult, yet rewarding experience. Every day I still am extremely overwhelmed. I have spent nights crying and many days avoiding speaking with others about it because they had no idea what I was going through. I soon learned that I was given Noah for a reason. Noah has taught me so much. He has taught me patience, optimism, hope, how to be a good mother, how to grow up, and most importantly how to be a true advocate. Once I made this discovery I knew I would fight for my baby forever. I do everything I can for Noah. I want to make sure I give him all the help he needs so that as he grows he won’t wonder why he is different from the other children. I struggle with feelings of guilt and sometimes am too overprotective and feel sorry for Noah, but I know deep down that I must keep high expectations in order for him to grow successfully and independently. I want the best for Noah and I will go the extra mile to let him know that he is special and has been given a gift.
3.Is your child developmentally the same or different from other children at the various ages?
a.Noah develops at a slower rate than the typical child. His delayed developmental milestones are associated with his disorder. For instance, typical children go through the tantrum stage at age 2. Noah went through this stage at age 4. This was challenging due to Noah being physically larger and more disruptive. Although his development is delayed, Down syndrome is a condition that is changing in many ways. Noah has immense potential for going to school and receiving a higher education. Those with Down syndrome are more and more accepted in society, allowing for those experiencing the disorder to be integrated into all aspects.
4.What professionals/agencies do you deal with? What services are available to you and your child?
a.I have been recommended to enroll Noah in early-intervention services early on in his life. He receives physical, occupational, and speech therapy, along with the help of his teachers and aides at school. The community and I have taken a part in Noah’s life to help encourage and accelerate development.
5.How did you find out about the above services?
a.I have found that learning as much as I can about Down syndrome has helped to alleviate some of my fears and uneasy feelings. It has been very important for me to do everything I can to help Noah. Because I have made this a goal, I have found that research goes along way. Researching on the internet and through my local community and elementary school has taught me a lot about the disorder and what I can do for Noah.
6.What financial burden, if any, are you experiencing?
a.Fortunately, the help Noah is receiving now is through his elementary school. It is a relief to know that there is help out there; one just has to take the time and look. For parents who are unsure of where to start, contact the support staff about services offered at your sons or daughters school. They should help you or direct you to someone who can.
7.What other information do you want to share?
a.My son Noah means the world to me. I wish so much for him. I have seen that his classmates are very supportive of his condition and help them in all that he does. His teacher really addresses and makes an effort to instill a safe environment for all her students. However, I wish he were not made fun of on the playground and I wish people knew and understood the dynamics of his life. If only they looked at Noah as the sweet and kind hearted boy I know and love so much. He is more than just a label. He is a beautiful and strong boy that will grow into an amazing young man. Other parents, who share the same feelings as I, do not be discouraged. Do not give up. This is something worth fighting for.
Glogster Link: http://emilyrm.edu.glogster.com/down-syndrome/
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