The perfect day!

It has been a long time since I have updated my Blog. Between work and meeting all the needs of my boys there is not a minute of time for me but I am not complaining! Steven and I were talking about our day, right before he fell asleep he said "today was the perfect day", once again inspiring me to share our story.....
Our day started as I prepared the boys for their belt tests at Ju Jitsu. Andrew testing for his orange belt and Steven his yellow belt. Andrew has been training since December and Steven July. Steve would always come with me to Andrew's class, he did show an interest but I thought it was not a good fit for him. Lots of structure, no fooling around and quite a bit of peer interaction. The Sensei tried to convince me to let Steve try. I had to hold back, I was not comfortable. How will the other children view him? How will this impact Andrew? lots of questions I wrestled with. Then, the very end of June I decided to let Steve try. Typically when children try a class they do it in street clothes until they get a gee. Sensei gave Steve a gee the first day and the rest is history. A child with major sensory issues wearing a gee, I could not believe it! He wears his gee proudly and trains hard. My goal for Steve was realistic, if he could pay attention in class for 1 hour then I would be thrilled and the rest would be icing on the cake. Well, as always Steve has gone above and beyond that. Once again inspiring me and all those around him. Not only does he sit and pay attention and learn but he is also teaching. Teaching these children and adults that have never met anyone living with Williams Syndrome. He learns how to work with others and they learn how to work with a person with a disability. These children take their experiences from the dojo to the outside world. Having learned that people with special needs are just like the rest of us, they just need a little extra help. The dojo supports Steven, encourages, challenges and protects him. He is loved there and he loves them all. Last week Sensei announced that Steve would have the opportunity to test for his yellow belt, Andrew and I were at the class when this was announced and we were SO EXCITED! Our Sensei has a huge heart, he knows Steve is giving 110% and he is rewarding him. Yes Sensei Tom, you are truly making a difference in a very special boys life!! How blessed we are to live in a community that has embraced Steven. I am proud to say both boys tested well and have moved up in rank. Steven was so proud of himself as he should be. For me it was a moment that words can do no justice, it was just a feeling. My journey has been quite a journey. Our challenges endless but that only makes the rewards so much sweeter. He is my shining star!!!!
After our test we were then off to the second annual WS family picnic. Last year the kids did not last more than 2 hours and this year it was close to 5 hours. The other WS families in our small group are truly extended family. We sit and chat, any and all behaviors are acceptable, nobody feels uncomfortable. These gatherings allow us to share our stories, good and bad. We are able to see what's ahead and perhaps better prepare ourselves as parents for the future. We all have learned that nothing happens if you just sit back and go along for the ride. Our children with WS needs endless advocating for. They are often misunderstood by professionals not familiar with WS. I recently went to a board of ed meeting. Not many parents there but there were parents of children with autism and parents of children with downs syndrome. These parents are giving their child's disability a voice in the school district. I have learned how important it is to give Williams Syndrome a voice and I am happy to be that voice.

Sisters

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!!

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.

A song to warm your heart

http://www.brucecarroll.com/default.aspx?pid=40

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...

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 :)

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....