Like any parent, I’m very proud of Brenner and know that I am lucky to have him. At the same time, there are days when I get frustrated and feel that this isn’t fair. Prader-Willi Syndrome is not well known and is still “getting out there” as far as research goes. I’m lucky that Brenner has only some of the symptoms of Prader-Willi Syndrome and has been able to adapt well. It seems unfair that he has to ‘adapt’ at all. Every parent likes to think of their child as being perfect, and wanting to do their best in keeping their child’s perfection. It’s extremely hard to accept that there is pain your child will go through that you can only do so much about. You never want your child to feel that way. Those days are the hardest.
b. How is your child developmentally the same or different from other children at the various ages?
Brennar, when he was first born, wasn’t too lively. Most infants born with Prader-Willi Syndrome aren’t. He was what the nurses called ‘floppy’, meaning he didn’t kick and cry normally like other babies. He had to be fed through a tube because he wouldn’t eat on his own. Because of this ‘floppiness’ or low muscle tone at birth, we were told we’d have to work with Brennar on moving him and helping to build up his muscles. As he got older, we noticed some developmental delays. Brennar has trouble speaking due to a lack of muscle control that he is continually working on. Brennar will always be small for his age, most likely reaching the maximum height of 5’4’’ when he’s an ‘adult’. He’s developmentally delayed a little bit behind the rest of his classmates now (He’s 9.) We noticed when he was 2 that he began the ‘classic’ symptom of Prader-Willi Syndrome: constantly eating. He’d do anything for food: do a trick for you, look for it anywhere, take it out of the trash. All of this was done even after he’d had a full meal. His body only needs half the calories of a ‘normal’ child, and so had we not monitored how much he ate, he could be morbidly obese. Brennar is also socially behind his classmates. He gets upset when frustrated and throws temper tantrums. He asks questions repeatedly even though he may know the answer, just for reassurance. Change can be a little scary for him. He does well in reading and writing along with his classmates but struggles in mathematics and abstract thinking. It takes him a lot longer to deal with those types of tasks. He also has poor short term memory. Any directions given strictly orally will either be partially done or not done at all, as his auditory processing is severely delayed. Over time, the eating has gotten better. There is now a medication that he can take that helps to curb his hunger and help manage weight gain.
c. What professionals/agencies do you deal with? What services are available to you and your child?
We’re extensively involved with the Prader Willi Syndrome Association of the UK and the Prader Willi Syndrome Association of the United Sates. Both are extremely good resources for parents and educators of children with Prader Willi. We became involved with the one in the United States first, and attend workshops and conferences with other parents. It’s nice to see a support group of people who understand what you go through. We became involved with the UK association as they had an even bigger resource list to turn to for Prader Willi Syndrome. My child can receive special services from the school due to the IDEA act, allowing for special education and for those needs to be met. He is currently working with the RSP teacher at his school and receives physical therapy there as well.
d. How did you find out about the above services?
These services were found out largely in part due to the two websites on Prader Willi Syndrome: Prader Willi Syndrome Association United States and United Kingdom. There really is not as much information out there about Prader Willi Syndrome yet. There are so many symptoms underlying the diagnosis that it is difficult to compile several resources together.
e. What financial burden, if any, are you experiencing?
We’re managing as of now, but my little one isn’t cheap. We have doctor visits often to check up on calorie intake and health check ups. Any physical ailments should be looked into early, especially as Brennar’s low muscle mass makes his muscles weak, making his body weak for fighting off infections and slow to heal.
f. What other information do you want to share?
Please look into those websites I mentioned above and help educate other people on all the different conditions children may have. Know that each child is different, including children with the same disabilities. They all have different needs and are all individuals. I’ve created a glogster with more information on Prader Willi Syndrome that you can access below. It has the links to the websites I mentioned as well as information useful to parents and teachers. Also, know that I do not view my child as being not capable because of his disability. I still want him to do the best he can for him.
http://treesha.edu.glogster.com/Glog-Prader-Willi Syndrome/
No comments:
Post a Comment