Sunday, February 12, 2012

Personal Insight: Williams Syndrome- "fighting for what she needs...."

This interview was done by a parent of a child who has been diagnosed with William Syndrome. Living in America,  this is  insight on their life, parent and child.

Tell us a little about yourself:  

I am a stay-at-home mother and teacher, who homeschools, cooks, cleans, and run my own business.  I have several children, and all of them have special needs in one way or another, although only one has been diagnosed.

Tell us a little about your darling and his or her diagnoses .  

My sweety was born with William's Syndrome, which is a genetic disorder that isn't hereditary (unless you already have it).  It comes from a random deletion in the 7th chromosome resulting in heart defects, kidney problems, learning disabilities, mild-moderate retardation, hypercalcemia, different facial characteristics, and a sleuth of other complications and interesting things.  She has heart and kidney disease, which causes her a lot of discomfort.  She is smaller than average, and probably won't do things as quickly as others or as smoothly as others.  People with William's Syndrome have an overly friendly personality and can be too trusting of dangerous situations or people.  She is delightful to have, although it get's very challenging because she gets stomach pains.  She is too young to be able to judge how she will be cognitively, but we will take each day as it comes.

How did the diagnosis come about? Were there difficulties with the diagnosis of your child's condition?  

She was tested in the NICU and I was called a few weeks later into the Pediatrician's office with the news.  There was shock initially, but I go with the flow.  It was already written.

How does your childs special need/s effect you and their daily lives?  

She sees many specialists monthly, get's blood drawn monthly, has colic, reflux, and other things going on.  It can be stressful, but the kids like to cater to her.  I have to keep her extra healthy because a cold for her could lead to other serious complications because of her heart condition.

Have you and your family gained any support from other family members or organizations?  

We have gained support from some organizations, but family is still a little slow to catch on that we need a little more support at times.

Are their services in your area who cater the needs of you and your family?  

We have occupational therapy, physical therapy, and a case manager to help navigate through the insurance world to make sure she gets what she needs.

Are you an active advocate for your child? How so?  

I fight for what she needs when others lose sight.  I am her advocate, and I pray I can continue to be as long as we both live.

Do you have any advice to give to others who may be going through the same as you and your family? 

 Turn to Allah, ask for help, ask for resources, educate yourself and your family, and give each child your absolute  best.  They are a loan to us, so we have to make sure we treat them in accordance to what they need.

Last but not least, how did you find out about I am Special With Needs!? 

I found out about it from a support group online.

Additional information (a few facts) on Williams Syndrome is in a link below...please go and read about it!

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