A Mother's Journey has been created to help other parents who are starting their journey with their special needs child. In the beginning I had very little information. I was given many paths to go down but often ended up in dead ends. This journey has many roads with many 'experts' pushing and pulling you. Over the years I have accumulated a wealth of information that can send newly diagnosed Williams syndrome families down the road "more" travelled. I want to share my spectrum of information from IEP's and therapies to medical insurace and medicaid. I want my site to be a place for questions that get appropriate answers. I want other parents to know that they are their child's voice and strongest advocate. Never settle for mediocrity. All of our chilren are unique and special, each take us on a Journey....
About Me
- Melinda Dolinsky
- We all have "special needs" some are just more unique than others.
Friday, May 29, 2009
Our family expands....
While Steve was at DDI our life became a little bit more "normal" and I mean a tiny bit! There were no therapy sessions after work so our evening provided the down time that we never had the years prior. At this time I felt it was important to move on, I wanted another child as did my husband. On May 28th, 2004 our family was made complete with the birth of Andrew Evan Dolinsky. Andrew was a scheduled c-section. I knew I was having another boy and I also knew he was genetically intact. Twelve weeks into my pregnany I had a CVS test, very well aware of the risks I still decided to go through with one of the most painful tests I ever experienced!
The remainder of my pregnancy was uneventful, yippie!
It's hard to put into words how much Andrew has given our family. As both of my children are unique they are so very different but somehow I manage to love them equally but differently. Steven in many ways is like a big toddler, still does not sleep the entire night, it's like I still wake for night feedings but at this point it's waking due to anxiety (I will get into that at another time)and when I look at Andrew it's seeing a big boy. I know that for many WS families the decision to go on and have more children after you have a WS child can be very hard. Our very dear psychologist Dr. Karen Levine and I have touched on the topic many of times.
Since I walk in the shoes I can honestly say having Andrew was the most amazing gift our family could have ever received. He shows us the "lighter" side of life. He has an amazing spirit and such a natural sense of compassion. At 5 years old he has developmentally passed Steven, it is definitely bittersweet but at the same time we were prepared for this. Andrew has taken on the role of 'big brother', he knows Steven needs help with things around the house and he is the first one to help him. He looks out for his brother and realizes there are many things that Steven can't do that he can. He does not truly understand why but I am confident that when we get to that point that he will embrace his brothers disability. The boys are also typical brothers in many ways, for example they will fight for the same toy which is very normal and at this point we welcome any type of normal that comes into our home!
The remainder of my pregnancy was uneventful, yippie!
It's hard to put into words how much Andrew has given our family. As both of my children are unique they are so very different but somehow I manage to love them equally but differently. Steven in many ways is like a big toddler, still does not sleep the entire night, it's like I still wake for night feedings but at this point it's waking due to anxiety (I will get into that at another time)and when I look at Andrew it's seeing a big boy. I know that for many WS families the decision to go on and have more children after you have a WS child can be very hard. Our very dear psychologist Dr. Karen Levine and I have touched on the topic many of times.
Since I walk in the shoes I can honestly say having Andrew was the most amazing gift our family could have ever received. He shows us the "lighter" side of life. He has an amazing spirit and such a natural sense of compassion. At 5 years old he has developmentally passed Steven, it is definitely bittersweet but at the same time we were prepared for this. Andrew has taken on the role of 'big brother', he knows Steven needs help with things around the house and he is the first one to help him. He looks out for his brother and realizes there are many things that Steven can't do that he can. He does not truly understand why but I am confident that when we get to that point that he will embrace his brothers disability. The boys are also typical brothers in many ways, for example they will fight for the same toy which is very normal and at this point we welcome any type of normal that comes into our home!
The early years...
The first 2 years were very hectic. I was (and have always been) working full time. Steven was getting 8 therapy sessions per week. He could have received more but our schedule would not allow it. We are very fortunate to live in an area with great resources if you know how to tap into them. We also had a wonderful Early Intervention coordinator who made sure Steve was receiving everything I thought he needed. I truly believe early intervention has been a huge part of Steven's development. At the age of 3 I enrolled him in a center based program and aged him out of EI (Early Intervention). My main reason for doing that was because I thought Steve was outgrowing home based services and could benefit using equipment that therapists could not bring into the house, also I was tired of the revolving door of therapists. I was always grateful for the home based services but we were at a point where Steve had no down time before bed and we had no family time. He ended up being enrolled in DDI in Huntington, NY.
Tuesday, May 19, 2009
The Beginning of My Journey
On April 28th, 2001 my journey into motherhood began.....
I welcomed into the world Steven Jason Dolinsky. Born via c-section one week past my due date. I labored for 27 hours! Finally due to a NRFHR (non reassuring fetal heartrate) Steve was born! A perfect baby boy! My first day as a new mommy was exciting and exhausting.
The next day the nurse came in and told me that Steven had failed his new born hearing screening. As a new mom this was devastating news...is my child deaf??? Not much support in the hospital especially when everyone would tell me this was very common, making no big deal about it. The next day I was told that we could not have a Bris(circumcision) for Steve due to a hypospadias repair that would need to be done at 6 months. So now all I can think about is, my baby needs to have surgery and could he be deaf? His hearing was testing one more time before leaving the hospital and once again he failed...
Our Journey continues....
The first 16 months of Steve's life was such a "cloudy" part of my life. He started receiving Early Intervention services at 12 weeks old. His services increased with each milestone that was delayed. In my heart I always new there was something not right with Steve, I knew it was more than just developmental delays. In the first 12 months of Steve's life I went to 13 specialists. I knew I was now on a diagnostic journey and I was going to keep seeing doctors until someone could tell me what was wrong. On August 15th, 2002 our diagnosis came. We had a positive FISH test. Steven had Williams syndrome. On that day a part of my heart died as I realized that many of my hopes and dreams for my child might not become a reality. At the same time I had a sense of relief that I finally got what I had been searching for....a diagnosis, a direction. It was now time educate myself on Williams syndrome and take action. There was no time to feel sorry for myself, it was time to make sure all Steve's medical needs were being met and to ensure that he was getting proper medical care.
I welcomed into the world Steven Jason Dolinsky. Born via c-section one week past my due date. I labored for 27 hours! Finally due to a NRFHR (non reassuring fetal heartrate) Steve was born! A perfect baby boy! My first day as a new mommy was exciting and exhausting.
The next day the nurse came in and told me that Steven had failed his new born hearing screening. As a new mom this was devastating news...is my child deaf??? Not much support in the hospital especially when everyone would tell me this was very common, making no big deal about it. The next day I was told that we could not have a Bris(circumcision) for Steve due to a hypospadias repair that would need to be done at 6 months. So now all I can think about is, my baby needs to have surgery and could he be deaf? His hearing was testing one more time before leaving the hospital and once again he failed...
Our Journey continues....
The first 16 months of Steve's life was such a "cloudy" part of my life. He started receiving Early Intervention services at 12 weeks old. His services increased with each milestone that was delayed. In my heart I always new there was something not right with Steve, I knew it was more than just developmental delays. In the first 12 months of Steve's life I went to 13 specialists. I knew I was now on a diagnostic journey and I was going to keep seeing doctors until someone could tell me what was wrong. On August 15th, 2002 our diagnosis came. We had a positive FISH test. Steven had Williams syndrome. On that day a part of my heart died as I realized that many of my hopes and dreams for my child might not become a reality. At the same time I had a sense of relief that I finally got what I had been searching for....a diagnosis, a direction. It was now time educate myself on Williams syndrome and take action. There was no time to feel sorry for myself, it was time to make sure all Steve's medical needs were being met and to ensure that he was getting proper medical care.
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