Here we go---starting School~~~

eep---I have been AMA for a few week as both Tommy and my mom had surgery.  Both are well, so I can get back on track.   I have been trying to figure out a way to organize a time line, but there are so many side roads!  I think I might  talk about equipment,  house adaptations and surgeries separately.....

        Let me begin with school today.....Tommy finished early intervention, and now @ 2 1/2 years old we had to decide on a school.  I don't remember how we choose United Cerebral Palsy  in Roosevelt, long island NY.  There were a few programs/schools to consider, I know that some parents were a bit freaked out when they went to visit UCP as they felt it looked so institutionalized, but I guess because I was a nurse that did not upset me at all.  I noticed the variety of disabilities, the happy faces, and the enthusiastic staff. In September, Tommy, this little peanut only 2 1/2 years old, with blondy blonde curly hair, got on a big yellow school bus.
     

 I cried my ass off.....but to my credit , I only cried after the bus pulled away, and I did NOT follow the bus to the school.  Now, this was a full day of school--7 hours for a2 1/2 year old. I was worried it would be too much for him, he would hate it, yadda yadda.    Unfounded fears!  Tommy did really well, he always happy and laughing, the staff was wonderful and loved him to death.  His first teacher was miss Annmarie, and his first therapist's were Linda and Betty.
      He needed some equipment and got his first pair of orthotics, (braces from foot to knee).  We also continued therapy @ home.  He stayed @ UCP until he was 5, and then I applied for him to be accepted into The Henry Viscardi School in Albertson, NY, on the recommendation of his teacher.  The Henry Viscardi School is a school for children that have physical disabilities, but are mental competent and have a high learning potential.  They follow a regular school curriculum, and you can go there through 12 grade.
   
     Kindergarten!  Miss Catherine was Tom's teacher---what a doll!  He had around 7-9 kids in his class and a 1:9 ration teacher to kids. I think there was a TA too. These kids were the BEST---happy, funny, smart from all over the state. Tom met Matt, Dylan, Tyler, Garrett, Nyia, and they all went through  school together. Henry Viscardi was a dream.  They had a fantastic therapy program, plenty of resources, all current equipment, an incredibly knowledgeable staff, and a swimming program for the grammar school. Each teacher worked so hard to get these kids to work up to their full potential.  Parents finally had a resource to find out about equipment, doctors, social work and entitlement benefits.

    The decision to pick schools was different for many parents---did you send your child to a specialty school like Henry Viscardi, or did you put your child into the regular school district program?  You had to weigh the pro's and con's of each, and it was not easy.  At the specialty schools you had the equipment, the knowledgeable staff, the ease of access and the extra help your child may need. They would also be with what I felt, would be a peer group.  A group of children that like themselves had a physical disability---something they could relate to, and not feel different.  A place where they were all EQUAL--- a place where they could build self esteem.  But, other parents would opt for district schools where their children would be in more of a regular setting, and dealing with all the normal challenges of a regular school.
     How do you decide??  All we can do as parents is make the best decision using our resources at the time.  We have no clue as to how these decisions will impact our kids until much later--like ANY parenting decision.  Let's face it --most of the time parenting is a crap shoot.

    Another decision that all the parents in our special needs support group had to make was whether we wanted to have another child . You have a child with special needs, and it throws you for a loop. Suddenly nothing is clear, the road is nowhere near smooth, and crazy things that the parent of a able bodied child will never have to deal with crop up. That answer that you always gave "sure we want a few kids",  has to be reconsidered.  Some of us opted to not have more children after having a special needs child.  I am sure probably one of the most difficult decisions of their lives.  We decided to have more kids----Bob and I did not want Tommy to be an only child , and selfishly, we wanted a chance to have an able bodied child.  We did not want the fear of "what if this happens again" to stop us from expanding our family.  You see, there is a loss you feel when you have a special needs child.  You don't love them any less, and you don't really want them to be anyone different, but you feel a loss of what could have been---seeing them walk for the first time, or pick up toys and throw them around, or go to Home Depot with their Dad and help him pick up tools.   We also had the unfortunate experience of my in-law saying " why do you want another baby, it is not as if Tommy can play with a baby sister or brother".  That was tough and hurtful and ignorant, and  it made us very angry.
     I had a miscarriage about 3 years after Tom was born, and was lucky enough to get pregnant again soon after. We had  Rosie in Aug 1997---a beautiful, healthy, girl who weighed in @ 5.5 lbs.  Her full name is Victoria Rose Buckley---Victoria for "victory" as she went full term, Rose after her great grandmother.  she became "Rosie" because bob came back after seeing her in the newborn nursery and told me that "her head is perfectly round, and she is a pink as a rose".  

     We have been very lucky and deeply blessed to have all the right people placed in our path to allow us to do the best we can, at the given moment, for Tom and our family.   thanks for listening....