a. How does it feel to be the parent of your child?
I absolutely adore my son, Shawn, he just experiences life differently than others because Shawn has a disorder called Angelman's Syndrome (A.S.). With having a son with a disorder, there are definite challenges however benefits from the person he is. We do the verbal communicating with Shawn, and Shawn communicates by nodding his had yes or no or pointing to visual pictures of his needs because one of the traits of A.S. Is speech impaired. Shawn does not talk at all, but one day, with the help of his speech therapy, he may be able to pronounce and communicate a few words, hopefully mama. Early in Shawn's life, Shawn was about six months old, and we started to notice there was something different about Shawn. At nine months, after many tests and diagnosis, the doctor was able to tell us that my son had Angelman's. I felt relieved that there was a name, a diagnose for his condition because I would be able to fit his needs and find other parents like myself. At first it was really stressful for my husband and I because Shawn would wake up in the middle of the night and we both would stay up with him. My husband and I, after awhile, began to take shifts of the nights he would wake up so that we both can remain sane and obtain some type of sleep. Another challenging aspect of life is making sure Shawn's schools and our home is accommodating to fit Shawn's needs. On the refrigerator, My husband and I have placed pictures of food he can eat. Shawn either points to the picture himself, or I give him a picture and ask him if he wants the food. Shawn then shakes his head with a yes or no. Though there are challenging aspects to our life with Shawn having Angelman's Syndrome, he is always joyful and smiling. Shawn loves to show affection and bring happiness to any situation. He is always laughing. Shawn is such a joy to be around because through the stress, he is constantly smiling, reminding me that he is a beautiful blessing.
b. How is your child developmentally the same or different from other children at the various ages?
My child is developmentally the same as other children because he has needs and emotions just like everyone does, however, Shawn's needs and emotions are slightly different because he has a severe developmental delay. Though most children begin walking between nine and twelve months, Shawn did not start walking until he was almost three years old. With Angelman's Syndrome sometimes it can take up until the age of six for a child to begin walking. Another developmental difference is language. Language never developed with Shawn. Shawn will be lucky to learn a few words. With the help of speech therapy Shawn may learn a few words. Picture cards and Sign Language are used to communicate with Shawn because his speech is impaired. Sign Language is not used fluently. Sign language usage would be compared to just using one or two words to communicate. Shawn also suffers from seizures periodically. The seizures tire him and because of the seizures it is important for Shawn to be around someone all day. Shawn looks like any other child with a happy demeanor, it is just his cognitive development, fine, and gross motor skills that sets him apart.
c. What professionals/agencies do you deal with? What services are available to you and your child?
Our family deals with and are involved with many agencies. One of the agencies my family deals with is the Angleman's Syndrome Foundation which can be found at http://www.angelman.org/. With this foundation, we are able to talk with other families that deal with Angelman's Syndrome. Also, with being involved with this organization, we discuss and post Shawn's developments, progresses and struggles. Speech and physical therapy are other resources we use to help Shawn developmentally. The educational writings from Charles A Williams, MD and Daniel J Driscoll, PhD, MD about Angelman's Syndrome were also found on the internet. Their research was helpful to my family and me when learning about Shawn and his disability. http://www.armyofangels.org/ got me acquainted with another family with Angelman's Syndrome and she was so helpful to describe her seven year old Liam and his developments. There are sources online that are helpful for families that are affected by Angelman's Syndrome. Shawn primarily deals with the services of speech, occupational, and physical therapy. With these different therapies, Shawn's fine motor skills will develop while working on puzzles and his pinch grip. His speech will improve with using objects to represent his feelings and using yes and no signals. Shawn will also learn daily life skills.
d. How did you find out about the above services?
I found out about the Angelman's Syndrome Foundations from researching on the internet. Through the sites on the internet I grew a relationship with one of the families that also have a son with Angelman's Syndrome and I was able to find the different therapies I needed for my Shawn.
e. What financial burden, if any, are you experiencing?
Having a special needs child is very expensive, but it is worth every penny to make sure my child has the resources he needs. I learned that money from the state and federal have helped our family, which is what the American citizen's tax money goes toward. We are so grateful for the system to be able to help us with some of the expenses our son has. Having a disabled child is a very expensive burden, but I cannot put a price on my son. Every service that he has, is needed and I cannot change that so I will do everything I can to make sure my son has the resources for him.
f. What other information do you want to share?
My child, Shawn, is a beautiful person inside and outside and we are grateful for the accommodations schools and teachers are making for our children to live like children. Angelman Syndrome shares traits with other disabilities such as Autism, Rett syndrome, Deletion syndrome, Cerebral Palsy, and more, so it it important to get your child tested to know your child's diagnosis to better treat and help your child. With patience, repetition and understanding, my son will continue to develop. Shawn will continue to grow and develop thanks to the resources available to him. I am thankful that I have a voice for my son so this rare disorder can continue to be recognized, researched and be of better help to the families with Angelman's Syndrome.
Desiré Dawson-Phillips
Glogster: http://desiredawonphillips.edu.glogster.com/ddpangelmanb22/
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