I always want my Blog to be filled with accurate information.
Just want yo clarify that I am NOT the author of "Sisters". It was sent to me by another WS mom and I thought it was so well written that I wanted to share it!!
About Me
- Melinda Dolinsky
- We all have "special needs" some are just more unique than others.
Thursday, November 19, 2009
Tuesday, November 17, 2009
SISTERS (sent to me by another Williams Syndrome mom)
Sisters
by Maureen K Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience…experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist' s offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.We are knowledgeable. We have educated ourselves with what ever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, and "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and physiatry.We have taken on our insurance companies and school boards to get what our children need to survive and to flourish. We have prevailed upon the state to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.But we sisters keep the faith always. We never stop believing.Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
by Maureen K Higgins
Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience…experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.We were initiated in neurologist' s offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.We are knowledgeable. We have educated ourselves with what ever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, and "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, nephrology, endocrinology, and physiatry.We have taken on our insurance companies and school boards to get what our children need to survive and to flourish. We have prevailed upon the state to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.We have our own personal copies of Emily Perl Kingsley's "Welcome To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.But we sisters keep the faith always. We never stop believing.Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.
Wednesday, September 2, 2009
Tuesday, June 16, 2009
Medications....
This leg of my journey has been the most difficult one by far....
The very early years were filled with many challenges, all somewhat in my power to manage. Mentally EXHAUSTING but manageable.Between the ages of 5 and 6 I saw a change in Steve's behavior. He seemed more anxious than usual. He was diagnosed with OCD and ADHD. Finally it was time to look into medications that could help with these behaviors and improve his quality of life. The writing had been on the wall for a good six months that we needed to explore this path. I knew I had to be mentally ready to go this route. It was a very difficult decision, one that I wrestled with for quite some time. It was hard for me to imagine administering medication to a child who has great difficulty verbalizing how he feels. What if he is feeling sick from the medication and can't tell me? Finally when I knew in my heart that this was the path we needed to go down I took a deep breath and made the phone call for a consultation. I remember the day well...I felt confident that this was the right choice for Steven and our family. No longer did I wonder how would I know how he was feeling, I realized that I always know how Steve is feeling by looking in his eyes. He is a true extension of my heart and soul.
Since people with WS are "neurologically wired" differently than others it was important to find a psychiatrist that was familiar with WS and had worked with children with WS.
Our very dear geneticist Dr. Barbara Pober highly recommended a psychiatrist who she had worked with at Yale when she was working at the WS clinic there.
I think if you are a parent almost at the end of your rope mentally (as I was, no shame in that!)it's important to keep in mind that even though you are making an effort exploring different medications you probably will not get a "quick fix" and if you do you are soooo very lucky! Here is a brief history of the medications we have tried....
Celexa, Ritalin, Adderall, Strattera, Guanfacine, Prozac and we just started Risperdal. With a couple of the medications the reactions Steve had were disturbing. I specifically remember giving him Ritalin. You would look in his eyes and he just was not there, he was loony and could not escape his own body. Finally it would wear off and I could take a deep breath and say, "OK, I tried and it did not work", on to the next. Many of these meds take time to build up in your blood system in order to see if there are any benefits. We tried all of the mentioned meds at different doses and in different combinations. Often the combination would work but then a few months later we would be ready for a change. At times it's one step forward and two steps back but at the end of each day I put my head on my pillow and I know I have given Steven 110%!
We have been on the medication route for two years now and our journey continues...
Saturday, June 6, 2009
Medicaid
As I mentioned in my Mission Statement I want to share information that I have gained. Through the years I have made many attempts to obtain medicaid for Steven. We always had medical insurance for him but with the amount of medical visits the co-pays were very costly as well as many of the medications. Also, being that Steven is hearing impaired it was important to have insurance that would pay for things that the school district would not cover(although in our case the school district paid for and maintains Steve's personal FM unit used in the classroom). I tried for years to get medicaid. Always getting the run around, I was told many times that our household income would not qualify us for medicaid (meaning Steven). Finally through OMRDD I was assigned a non-medicaid service coordinator at UCP. This was like my 'big break'! I learned that a child with a disability can qualify for medicaid regardless of the household income.
This person held my hand during the entire process until we finally got approved.
Being a strong advocate is what has gotten us the this point. If you decide to go down this path, which I highly recommend it is important to keep in mind that it's endless phone calls and constant follow up but in the end truly worth it. If you are interested in getting information please check out the following website,
http://www.health.state.ny.us/health_care/medicaid/#qualify
Please feel free to contact me in you need any additional information of assistance :)
This person held my hand during the entire process until we finally got approved.
Being a strong advocate is what has gotten us the this point. If you decide to go down this path, which I highly recommend it is important to keep in mind that it's endless phone calls and constant follow up but in the end truly worth it. If you are interested in getting information please check out the following website,
http://www.health.state.ny.us/health_care/medicaid/#qualify
Please feel free to contact me in you need any additional information of assistance :)
Friday, May 29, 2009
Mission Statement
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....
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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