James, My Unexpected Gift

As a parent of a child with special needs, I always get asked questions on how I cope with my extra responsibilities. I have decided to blog about the questions I get asked most frequently so every body can view my thoughts and feelings.

1.How does it feel to be the parent of your child?

It is difficult being a parent of a child with Williams Syndrome. When James was born, I pictured this perfect child. I did not know anything was wrong until I fed him for the first time. He could not take in any of the milk I was giving him and he was constantly throwing up. This is when I knew that something was wrong. James was diagnosed with an extremely rare genetic condition called Williams Syndrome. My heart dropped and my only thought was "this couldn't be happening to me". I can tell you right now that I was always tired. If I had any free time, it would be spent researching on the condition instead of having "me time". As James grew older, he bloomed into this social butterfly that made you smile. It is extremely difficult at times and I have cried myself to sleep on difficult days, but I could not ask for anything more than my James.

2. How is your child developmentally the same or different from other children at the various ages?

Williams Syndrome is a developmentally delaying condition. James hit all his milestones way later than other children. My son did not walk until he was 27 months old compared to other children that were starting to walk at just 12 months old. He is the same as other children in his social development.  His vocabulary is growing like other children his age. I am already looking into clothes that are easier to put on for James because he lacks muscle coordination. I want to teach him to be independent. Clothes without buttons or zippers will be easier for James to do on his own.

   

3. What professionals/agencies do you deal with?  What services are available to you and your child? 

I deal mainly with the Williams Syndrome Association. It is a great resource for my family when

we need information. We have yearly socials with other families whose child is diagnosed with
Williams Syndrome. These families provide much support for us when we are struggling with
James. I know when James enters elementary school, the Williams Syndrome Association will be
there to guide me with my son's IEP and help me advocate for my child. James attends
intervention programs through the association. We have taken James to the San Diego Children's
Hospital, where there is a Williams Syndrome clinic. There are no cures for WS, but they do
assess James and provide me resources that can help me.  

4. How did you find out about the above services?

I found out about the Williams Syndrome clinic in San Diego through James' pediatrician. He gave us a referral to go see the specialists. It is at the children's hospital that they gave me the website for the Williams Syndrome Association. The association was the best referral that I have gotten so far. 

 

5. What financial burden, if any, are you experiencing?

James has needed multiple operations for his cardiac problems and the bills are stacking up. We do have medical insurance, but they do not pay for specialty therapists that we think are important in helping James develop. We have taken out a second mortgage on the house to attempt to pay off some of his medical and therapy bills. The financial burden is so severe, that it is the main source of most of my husband and my arguments. 

6. What other information do you want to share?

Even though my son has Williams Syndrome, he is extremely social and gets along well with others. I think it is unfortunate that children on the playground or in a store will walk away from him because of his distinct facial features. We, as parents, just educate our children to be more accepting of differences.