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....

and so we move forward~~~the first few years......

 

   Thomas spent 11 1/2 weeks in the Neonatal ICU---NICU for short.  Touch and go everyday.   Bob and I settled into a routine--I would visit the hospital every morning with my mom and we would visit together @ night when he came home from work.  Some problems Tom did NOT have, thankfully, were: ROP -retinopathy of prematurity which can decrease vision; NEC-necrotizing enterocolitis  which destroys your intestine.  What he did have were an  IVH grade lll--intraventricular hemorrhage-- bleeding into the ventricles of his brain; and PVL-periventricular leukomalcia which were lesions in the white matter of his brain.  These 2 were the cause of his cerebral palsy.  His brain had a period of ischemia--decrease blood supply/oxygen to the brain.    Now, no one knew while we were in the NICU that he would have CP, we only knew that the IVH and PVL might lead to signs and symptoms of CP.  
     
     Then it was finally time to go home! the nurses and Neonatologists had prepared us well for this day, but we were nervous.   Bob and I, and anyone who would be watching Tom in those early months had to be trained in CPR.  My Mother and father volunteered to be trained also.  Tom came home 3/23/93 with an apnea monitor that would blast an alarm if he stopped breathing----while this might panic some parents, we were relieved!  We could actually sleep at night , because the alarm would alert us to any breathing issues.  I would NEVER have slept without the apnea monitor.  In fact, while he was still on the monitor we took him upstate with us to a bed and breakfast we would stay at when we went skiing.  We were good friend with the owners, Peggy and Joe and we just wanted to get away.  The monitor had been on Tom for a few months, and we never had an apnic event so off we went.

     Looking at all the pictures from the first couple of years brings back so many memories........the formula was a special prescription and it cost a small fortune!  Tommy would not stop crying.....oh my..... his neurological deficits made it so difficult for him, poor baby.  I would swaddle him tightly, try to keep the binky in his mouth so he could suck, and give him mylicon drops.  We figured out that if you held him in a "C" shape--support his neck and curve him into a "C", this would help.  Bob and I sat on the stoop in the early spring one day and just cried because we did not know what else to do.   I thought  "my god, if we are  two middle class educated adults, with a supportive family, and we are this frazzled and stressed, how in the world do single moms with little income and support handle this?"  For the first time I could understand why parents throw their babies out a window or smother them!

   Things got better.   Tommy slept more and was more comfortable. He grew like a weed.  He was always smiling!  I had never seen such a happy baby. Every picture we have of him , he has a huge smile.  We were hooked into an early intervention program and a parade of wonderful therapists came to the house to work with him.  Pt and OT was slow progress, but speech therapy--oh what a joy!  When physical goals are so slow, and not always achievable, speech therapy goals came early.  so happy to see progress in sounds and speech.  I still remember that first speech therapist--Joan K.  we stayed in touch for many years.   Family, friends, and neighbors were wonderful---we were so grateful for all their help and support.

    I guess it was somewhere around June that I knew something was not right.  Tom's hands were fisted a lot, his legs were stiffer than  other babies.  When the doctors finally said yes he has cerebral palsy we were ready for it.  Funny, I did not do a lot of research in the first few years--I think I really did not want to know too much.  I wanted to see how Tommy progressed.  I remember the therapists'  giving me looks that showed they did not think there was too much going on mentally with Tom, but I knew they were wrong.  I will always remember going to see the Neonatologist for a check up and CT scan, and he said to us "it doesn't matter what the test show, it matters what your baby is doing".

    I will leave you with a funny story......
Really, we had been through so much, we learned not to sweat the small stuff, or get crazy with germ control.   I believe some germs are good for you, and you need exposure to build your immune system
      Tommy had weak muscles and poor control, and he could not hold onto his binky (pacifier) in his mouth very well.  As anyone who had had a baby know, they need to suck--it comforts them.  Tom would lose that pacifier every few minutes and cry.  It was a special one, that did not have a strap or a clip.   It would bounce here, there and everywhere.   We had a black Labrador named Digger that I had trained to get the pacifier and bring it to me.  Well, one day my girlfriend Barbara was over with her baby who was approx the same age as Tom.  She came prepared----she had a huge diaper bag with at least 6 sterilized binky's in there. Every time her baby would drop the pacifier---boom! she would whip out another sterilized pacifier and pop it in his mouth.  So of course Tom drops his, it flies off somewhere, and I call the dog and say "Digger, bring me Tom's binky".  Digger grabs it, brings it to me and *phoot* spits it in my hand. I wipe it off on my pants and pop it in Tom's mouth. WELL, poor Barbara was HORrified!!!   I will tell you---my kids including Tom were hardly ever sick--no strep, no GI viruses, hardly a cold to this day.

Well , thank you for listening......see you next week and stay well    cathy

the beginning......

the beginning......

My son Tommy turned 21 last week.  He was born very prematurely @ 26 weeks, and has cerebral palsy.  For some reason, as I look back on 21 years, I have the need to chronicle, to remember our journey, to show others how far we have come and what it took to get here.  So here I sit…….

and I remember……

      I remember….. a conversation I had back in 1986 with my friend and manager at the time, Mary.  I had just transferred to queens VNSNY, and had gotten engaged, and we were discussing what we would do if we had a handicap child.  We were both nurses, and we talked about  Down’s syndrome and spina bifida.  I clearly remember saying ” I don’t know how I would be able to handle that”.  I was 25 at the time.    I married my hubbie, Bob and went about creating the yuppie dream, good jobs, money to burn, got the black labrador, saved up and bought our first house in a nice neighborhood in the burbs, and got pregnant according to our 3-5 year plan, and bought a Volvo.

      I remember….. one night while I was pregnant I woke up early with an incredible sense of peace, an indescribable feeling of calmness. I felt as if the Blessed Mother Mary was in the room with me.  I felt that all was right with the world and my life.

    A few months later I went into labor @ 26 weeks into the pregnancy.  The contractions started, we called the local police and ambulance who were there in 1 minute.  They had to carry me down the stairs on a stretcher with me saying to one of the EMT’s  “but I can’t be having the baby, I am only 26 weeks pregnant!”  Being a nurse, I knew this was not good at all.  He calmed me down and apologized for having to put a 16 gauge IV in me!  which hurt like hell by the way!   Off we go to the ER.   All hell breaks loose in the delivery room—everyone running around, I am scared to death as is Bob.  Everyone is understandably concerned about the baby, and I ask a nurse to please stay with me and hold my hand, and tell me what’s happening.   I will always be grateful to that nurse for staying with me.
     
     I remember……this tiny, tiny baby boy 2.5 lbs lying in an incubator with more tubes than I thought possible;  the knitted caps that volunteers made for all the premie’s in the Neonatal ICU;  The first book we bought and read to him every single day  “On the day you were Born”;  the tape recorder we left with the nurses to play for him so he would hear the sound of our voices;  sitting with the other parents in the waiting room day after day talking about our babies small steps; 
    
      I remember……coming out of the hospital @ 1am after Tom had a particularly rough day and seeing that Volvo and saying “who gives F**ck what kind of car we have! None of it matters when our baby could die at any moment”;  the late night phone calls that he had stopped breathing and could we come in?;  When I broke down in tears on the elevator in the hospital and a social worker was there with me and put her arms around me to help;  going to the chapel and praying.
   
      I remember…… the loving and professional care the neonatal nurses and doctors gave our son;  My father who was a stoic German came to visit on his own almost everyday;  my mom who visited with me in the mornings everyday;  my in laws who came only once during the entire 11 1/2 weeks of Tommy stay;  the baby, Michael, who was to be going home the next day and died that night——and the consuming grief his parents felt; 
and

     I remember……holding on to my husband for dear life thinking we WILL get through this, and that we picked a good wedding song : “Nothing’s gonna stop us now” !;   and that visit from the Blessed Mother that everything would be all right.  and naming our baby boy Thomas after his stubborn, stoic, loving, grandfather  because he would need all of that to make it through.

more next week, the first few years!