Those first three years was an endless stream of discoveries so to speak. As I said, mom and dad realized that while I was special I was also different, as the many visits to Dr’s and the hospital became a growing list of “disabilities” .
By age three, it had been determined that I had several issues on board:
Sight (strabismus and near-sighted)
Hearing (recurrent ear infections, hearing loss)
Speaking (I didn’t)
Ambulating (I couldn’t)
Developmental Delays (Not likely to progress beyond 24 months)
Gastro-intestinal (Small stomach, slow motility)
Gastro-intestinal (Severe reflux – projectile vomiting)
Food Allergies (Soy, Dairy)
Medical Allergies (most antibiotics)
Substance Allergies (latex)
Texture sensitivity (Grass, Concrete, Carpeting, …..)
Oral Texture sensitivity
Seizures (Suspected)
Asperger Syndrome (Confirmed)
And
Down Syndrome
Just to name a few
But I had settled in and settled down….Mom’s life had already been changed irreversibly. She had stopped working when I was a three month in utero and hadn’t returned. It just made no sense since she had to be readily available to attend to my needs. Guess her thought at the hospital that life would never be the same had been accurate but somehow I don’t think she would have had it any other way….
Friday, October 30, 2009
Barney Moves In
Later on, after I stabilized a bit and could almost sit up, I became familiar with TV never really watched TV when I was young but I did watch the same VCR tapes (remember VCR Tapes ?) over and over. One day mom was looking for something on TV and she came across “Barney and friends”. I seemed to enjoy it so she bought a VCR tape of a few shows and thus began an almost endless parade of “Barney Video Tapes, Barney Audio Tapes, Barney Songs, Barney Concerts, Barney Dolls, Barney Toys. It was purple and green everywhere !
I eventually got up to about 15 Barney Videos that were played repeatedly and The whole family knew all of the characters; Barney, Baby Bop, the “real” kids.
I simply LOVED Barney and his “Let’s be friends”. Anyone who came to our house had to know the theme song. Barney was the first of my many video obsessions and he by far lasted the longest. Dad put my favorite songs from my other video obsessions on the right. Enjoy them when you can .....
I eventually got up to about 15 Barney Videos that were played repeatedly and The whole family knew all of the characters; Barney, Baby Bop, the “real” kids.
I simply LOVED Barney and his “Let’s be friends”. Anyone who came to our house had to know the theme song. Barney was the first of my many video obsessions and he by far lasted the longest. Dad put my favorite songs from my other video obsessions on the right. Enjoy them when you can .....
Wednesday, October 28, 2009
"Mom ran over the dog" ...
So when I was born, dad was working for a company named Keane, Inc. – a consulting firm (then) based in Boston. On news of my birth and the complications, Keane Corporate told the branch to keep dad “on the bench” (unassigned) until I came home from NBSCU (Newborn Special Care Unit). Dad was only required to physically report into the office every day and then he could leave so he would be (and always was) available if I needed him. After I came home from NBSCU, dad went back to work on an assignment at a large insurance company in Bloomfield that shall remain nameless (CIGNA). I was still in danger of any one of a number of critical issues developing so dad naturally told both Keane and CIGNA that he may have to leave for the day at anytime and with little, if any, notice. A few weeks after dad had settled in at the assignment, he was in a meeting with several higher-ups from both the client and Keane when his cube-mate came (literally) running into the meeting in a panic and told him “your wife is on the phone and almost hysterical. I couldn’t understand anything she said except ‘Andrew’”. Dad immediately left the meeting and ran up the escalator to his desk where everyone was staring at him (Apparently his cube-mate just stood up and yelled “has anyone seen Brian” so everyone within ear-shot the floor was watching to see what was going on).
Dad picked up the phone, expecting the worse.
Mom explained thru tears that she had run over the dog !
SHE HAD RUN OVER THE DOG !
Now dad is standing at his desk, all eyes on him with expectations that he will announce that I have a medical emergency and instead he has to explain that mom ran over the dog!
He asked exactly happened asked dad, trying to look like someone dealing with a medical emergency should look and mom explained through sobs of relief that she had somehow backed over the dog and Ruffles (the dog’s name and no, dad had nothing to do with it !) had become trapped under the car on the grass strip in the center of the driveway. She said the dog seemed to be ok, just trapped, but she couldn’t move the car and she had called the police. Dad struggled to find a way out of the “all eyes on him” scenario. Finally, he said loudly into the phone “Oh God, I’ll be home as soon as I can get there”, hung up, told anyone listening “all I can understand is she can’t move the car and she called the police !” and left.
Everyone of course assumed that I had an emergency and dad managed to get out of a potentially embarrassing situation without lying or having to explain leaving the meeting with the higher-ups over a dog.
The dog was ok and ran around as if nothing had happened as soon as the poice jacked up the car and she got free of the oil pan pinning her to the grass.
There is more to this though. The dog actually did sustain one injury, a tooth somehow became loose. When dad got home, Mom (feeling badly for what had happened) cooked a nice piece of meat for the dog, cut it and fed it to her. At thaqt point, he tooth came out, the dog swallowed it and began to choke so the day ended with dad chasing the dog around the yard and performing he Heimlich on her.
Dad continued to work at that client on and off for the next 18 years but he never told anyone what had really happened that day until just this past spring.
As they say in that commercial, "Ah, the memories".
It took me a long time to even sit up but once I did, I realized that I could “scoot” so rather than even try to stand or walk, I just sat with one leg folded and pulled myself along the floor with my other foot. You could be sitting at the table and you would detect movement in your peripheral vision. That would be me, scooting at top speed (which was remarkably fast) to something that had caught my attention BUT only if the surface was right and I don’t mean slippery or something that might aid or prohibit my sliding, I mean a surface that I liked. I was texture sensitive, not only orally (eaten foods) but touch also, for example, I would burst into tears if I was set down on Grass !.
I also learned to climb and took fondly to “Table spinning”. Any elevated surface would do. I would just climb up there, cross one leg and spin myself silly with the other leg. Nothing stopped me – if there was a lamp on the table of choice, I would just push it off onto he floor. This got so bad that mom put away anything that was not absolutely necessary and dad actually bolted down the lamps !
And I also came with some "strange" benefits …
Dad learned early on that if he needed to throw out a “possibly questionable” item, all he had to do was surround it in the trash can with my diapers! It would be taken, no questions asked !
Dad picked up the phone, expecting the worse.
Mom explained thru tears that she had run over the dog !
SHE HAD RUN OVER THE DOG !
Now dad is standing at his desk, all eyes on him with expectations that he will announce that I have a medical emergency and instead he has to explain that mom ran over the dog!
He asked exactly happened asked dad, trying to look like someone dealing with a medical emergency should look and mom explained through sobs of relief that she had somehow backed over the dog and Ruffles (the dog’s name and no, dad had nothing to do with it !) had become trapped under the car on the grass strip in the center of the driveway. She said the dog seemed to be ok, just trapped, but she couldn’t move the car and she had called the police. Dad struggled to find a way out of the “all eyes on him” scenario. Finally, he said loudly into the phone “Oh God, I’ll be home as soon as I can get there”, hung up, told anyone listening “all I can understand is she can’t move the car and she called the police !” and left.
Everyone of course assumed that I had an emergency and dad managed to get out of a potentially embarrassing situation without lying or having to explain leaving the meeting with the higher-ups over a dog.
The dog was ok and ran around as if nothing had happened as soon as the poice jacked up the car and she got free of the oil pan pinning her to the grass.
There is more to this though. The dog actually did sustain one injury, a tooth somehow became loose. When dad got home, Mom (feeling badly for what had happened) cooked a nice piece of meat for the dog, cut it and fed it to her. At thaqt point, he tooth came out, the dog swallowed it and began to choke so the day ended with dad chasing the dog around the yard and performing he Heimlich on her.
Dad continued to work at that client on and off for the next 18 years but he never told anyone what had really happened that day until just this past spring.
As they say in that commercial, "Ah, the memories".
It took me a long time to even sit up but once I did, I realized that I could “scoot” so rather than even try to stand or walk, I just sat with one leg folded and pulled myself along the floor with my other foot. You could be sitting at the table and you would detect movement in your peripheral vision. That would be me, scooting at top speed (which was remarkably fast) to something that had caught my attention BUT only if the surface was right and I don’t mean slippery or something that might aid or prohibit my sliding, I mean a surface that I liked. I was texture sensitive, not only orally (eaten foods) but touch also, for example, I would burst into tears if I was set down on Grass !.
I also learned to climb and took fondly to “Table spinning”. Any elevated surface would do. I would just climb up there, cross one leg and spin myself silly with the other leg. Nothing stopped me – if there was a lamp on the table of choice, I would just push it off onto he floor. This got so bad that mom put away anything that was not absolutely necessary and dad actually bolted down the lamps !
And I also came with some "strange" benefits …
Dad learned early on that if he needed to throw out a “possibly questionable” item, all he had to do was surround it in the trash can with my diapers! It would be taken, no questions asked !
Tuesday, October 27, 2009
Life Goes On
So life chugged on in my first years with a routine revolving around eating, Dr’s visits and Birth-to-three (Marty, Rhonda and Ruth) visits. Even though I spent a lot of time with medical issues, the specifics are boring and have thankfully slipped from my memory. Suffice it to say that I had more hospital visits than I care to remember, Emergency room and hospitalizations and specialists visits. I do remember that when we went to a new Doctor or the Emergency Room (which was often), mom and dad would always tell the nurse that they would need several people to take blood for testing (which they did every visit). And the nurse would always respond “OK” with a “you’ve got to be kidding, he’s just a Down Syndrome baby” tone of voice. They had no idea how physically strong I was and how well I hid it. Most blood draws resulted in dad laying across my chest, mom holding my feet and two or three nurses / Doctors holding my arms !
And as I said earlier, I developed projectile vomiting – an enviable trait under the right circumstances if you can do it on demand. Once, mom went to see the Town of Hamden Student Transportation Department to “explain” why sis needed to be picked up at our house instead of the “regular” school bus stop. The regular bus stop was at the end of our street and mom couldn’t either leave me home or take me with her to the corner to wait for the bus with sis. In spite of numerous calls to numerous people and explaining my situation, the town wasn’t being very cooperative. Then, mom went to town hall to explain in person and show me to them so they could see that she wasn’t lying (Hamden’s approach on transportation is to assume that you are lying to get special treatment). During the meeting, and almost as if on command, I projectile vomited on the nice man’s suit just as mom had finished explaining to him that projectile vomiting was one of the issues she dealt with. The bus was at our front door the next day !
Now, this is not to say that Hamden was uncooperative about me – remember this was sis’s bus we were talking about. I hadn’t even entered the school system yet – I was just a baby in a car seat.
All this does bring to mind specific memories. Tomorrow I will start to tell you about them, stories like “When mom ran over the dog ……”
And as I said earlier, I developed projectile vomiting – an enviable trait under the right circumstances if you can do it on demand. Once, mom went to see the Town of Hamden Student Transportation Department to “explain” why sis needed to be picked up at our house instead of the “regular” school bus stop. The regular bus stop was at the end of our street and mom couldn’t either leave me home or take me with her to the corner to wait for the bus with sis. In spite of numerous calls to numerous people and explaining my situation, the town wasn’t being very cooperative. Then, mom went to town hall to explain in person and show me to them so they could see that she wasn’t lying (Hamden’s approach on transportation is to assume that you are lying to get special treatment). During the meeting, and almost as if on command, I projectile vomited on the nice man’s suit just as mom had finished explaining to him that projectile vomiting was one of the issues she dealt with. The bus was at our front door the next day !
Now, this is not to say that Hamden was uncooperative about me – remember this was sis’s bus we were talking about. I hadn’t even entered the school system yet – I was just a baby in a car seat.
All this does bring to mind specific memories. Tomorrow I will start to tell you about them, stories like “When mom ran over the dog ……”
Monday, October 26, 2009
"You've Got A Friend In Me"
In 1995 “Toy Story” came out. We went to see it and immediately became obsessed – those who have seen it know that it is every bit adult subtext as it is a movie for kids and as I am sure was the case everywhere else, certain “catch phrases” became a standard in our house. Depending on the situation and circumstances, you might hear.
• Ages three and up! It's on my box! Ages three and up!
• Were you scared? Tell me honestly
• I have been chosen. Farewell, my friends. I go to a better place.
• This is a perfect time to panic
• I just don't think I can take that kind of rejection!
• You uncultured swine!
• To infinity, and beyond!
• This isn't flying. This is falling with style!
• I am Buzz Lightyear. I come in peace
• The Claw is our master
• Pull my string!
• I don't like confrontations!
• What would you say if I get someone else to watch the sheep for me tonight?
And dad's favorite,
"Well, I'm not really from Mattel, I'm actually from a smaller company that was purchased by Mattel in a leveraged buyout.".
The catch-phrases faded in popularity and were replaced with the theme song title - “You’ve got a Friend” – mostly because I replayed the beginning of the movie endlessly (remember, I said I liked sound .. and the same sound … over and over again).
But, over time and for reasons I still didn’t understand, that phrase became associated with me, my trademark if you will. So much so that when the family was arranging the funeral liturgy, they were asked what phrase came to their minds about me and they all answered in near-perfect unison “You’ve got a Friend in me.”. I myself never really understood why that phrase stuck to me until my younger sis … wow , that sounds strange and seems even stranger. Even at 18 I was still a baby and always looked up to her …. …..
Oh, yeah. I never really understood why the phrase “You’ve got a Friend in me.” became My phrase until my younger sis spoke at my wake and said (in part)
“When asked what phrase came to our minds about Andrew, we all answered with ‘You’ve got a Friend in me.’ Literally, that’s what Andrew was; he was a friend to every face that saw him, for he was never angry or sad, but instead, upbeat and loving. He gave us a gift we could never ask for, and he delivered it with perfection. I can guarantee you that there is no one who disliked Andrew. His ambiance and aura was contagious, lighting up everyone’s faces and day no matter the circumstances …….
…..our brother was unlike the rest. When I say unlike the rest, it’s in a good sense. He was unique because he was a genuine and innocent soul with the heart of a fighter and did, in fact, fight until the very end…….”
And so it is now that I will be remembered by that phrase, and I am OK with that.
I think dad is even planning to put “You’ve got a Friend in me” on my grave marker ….
“You’ve got a Friend”
You've got a friend in me
You've got a friend in me
When the road looks rough ahead
And you're miles and miles
From your nice warm bed
Just remember what your old pal said
Boy, you've got a friend in me
You've got a friend in me
You've got a friend in me
You've got a friend in me
You've got troubles, well I've got 'em too
There isn't anything I wouldn't do for you
We stick together and we see it through
You've got a friend in me
You've got a friend in me
Some other folks might be
A little bit smarter than I am
Bigger and stronger too
Maybe
But none of them will ever love you the way I do
It's me and you
And as the years go by
Boys, our friendship will never die
You're gonna see
It's our destiny
You've got a friend in me
You've got a friend in me
You've got a friend in me
• Ages three and up! It's on my box! Ages three and up!
• Were you scared? Tell me honestly
• I have been chosen. Farewell, my friends. I go to a better place.
• This is a perfect time to panic
• I just don't think I can take that kind of rejection!
• You uncultured swine!
• To infinity, and beyond!
• This isn't flying. This is falling with style!
• I am Buzz Lightyear. I come in peace
• The Claw is our master
• Pull my string!
• I don't like confrontations!
• What would you say if I get someone else to watch the sheep for me tonight?
And dad's favorite,
"Well, I'm not really from Mattel, I'm actually from a smaller company that was purchased by Mattel in a leveraged buyout.".
The catch-phrases faded in popularity and were replaced with the theme song title - “You’ve got a Friend” – mostly because I replayed the beginning of the movie endlessly (remember, I said I liked sound .. and the same sound … over and over again).
But, over time and for reasons I still didn’t understand, that phrase became associated with me, my trademark if you will. So much so that when the family was arranging the funeral liturgy, they were asked what phrase came to their minds about me and they all answered in near-perfect unison “You’ve got a Friend in me.”. I myself never really understood why that phrase stuck to me until my younger sis … wow , that sounds strange and seems even stranger. Even at 18 I was still a baby and always looked up to her …. …..
Oh, yeah. I never really understood why the phrase “You’ve got a Friend in me.” became My phrase until my younger sis spoke at my wake and said (in part)
“When asked what phrase came to our minds about Andrew, we all answered with ‘You’ve got a Friend in me.’ Literally, that’s what Andrew was; he was a friend to every face that saw him, for he was never angry or sad, but instead, upbeat and loving. He gave us a gift we could never ask for, and he delivered it with perfection. I can guarantee you that there is no one who disliked Andrew. His ambiance and aura was contagious, lighting up everyone’s faces and day no matter the circumstances …….
…..our brother was unlike the rest. When I say unlike the rest, it’s in a good sense. He was unique because he was a genuine and innocent soul with the heart of a fighter and did, in fact, fight until the very end…….”
And so it is now that I will be remembered by that phrase, and I am OK with that.
I think dad is even planning to put “You’ve got a Friend in me” on my grave marker ….
“You’ve got a Friend”
You've got a friend in me
You've got a friend in me
When the road looks rough ahead
And you're miles and miles
From your nice warm bed
Just remember what your old pal said
Boy, you've got a friend in me
You've got a friend in me
You've got a friend in me
You've got a friend in me
You've got troubles, well I've got 'em too
There isn't anything I wouldn't do for you
We stick together and we see it through
You've got a friend in me
You've got a friend in me
Some other folks might be
A little bit smarter than I am
Bigger and stronger too
Maybe
But none of them will ever love you the way I do
It's me and you
And as the years go by
Boys, our friendship will never die
You're gonna see
It's our destiny
You've got a friend in me
You've got a friend in me
You've got a friend in me
Saturday, October 24, 2009
The GAMEBOY
As long as I can remember I have had ear infections, I may even hold the record at 13 pairs of ear tubes. With all the infections, it became apparent at a fairly early point that my hearing was diminished. I never quite got to the point of needing a hearing aid but I did have a hard time hearing. If you walked into the den at home, you would likely find me with my ear against the TV speaker so I could “hear” what was going on. And I really liked to hear the same thing over and over again. Way back, mom bought a Gameboy (one of the first ones !) with games for sis. As soon as I saw it, I had to have it …. And I got it … not that one actually, but mom bought one for me. I didn’t have many games (at first) because I didn’t play the games, I just wanted the sound .. and the same sound … over and over again.
Whenever we were going out, I would grab my Gameboy … it was always in precisely the same spot …..and my spoon, and off we went. At first, it was fairly obvious with the older Gameboy that I was listening to a Gameboy and people would politely ask mom what game I was playing or comment on how intently I played the game, but as time went on…. The Gameboy got smaller and cell phones became prolific and smaller, people started to assume I was on a call. I know you are saying to yourself “I’ll just bet they did”…but they really did. These people were absolutely convinced that I was on a cell phone
Whenever we were going out, I would grab my Gameboy … it was always in precisely the same spot …..and my spoon, and off we went. At first, it was fairly obvious with the older Gameboy that I was listening to a Gameboy and people would politely ask mom what game I was playing or comment on how intently I played the game, but as time went on…. The Gameboy got smaller and cell phones became prolific and smaller, people started to assume I was on a call. I know you are saying to yourself “I’ll just bet they did”…but they really did. These people were absolutely convinced that I was on a cell phone
Friday, October 23, 2009
The SPOON
Ok, time to explain some things. Since my wake, mom and dad have been asked why there was a mixing spoon in my casket and they have realized that there are a lot of people who don’t know of some of my idiosyncrasies, so
The “infamous spoon” – I could never really use a “binky” (pacifier), my tongue was too big for my mouth (a Down Syndrome trai) and a “binky” just kept slipping out so when I wanted something in my mouth, I would chew on my fingers. And I do mean chew….not put my finger in my mouth, but actually chew, and to such a point that I still had calluses, from chewing, on my finger when I passed. One day while mom was cooking dinner, and after having tried everything imaginable to stop me from chewing my finger, mom just pulled my hand from my mouth and handed me the spoon she was using. I ofcourse put it right into my mouth and liked it but more importantly, it had what mom and dad started to refer to as “skake-a-bility”. If I held it just right (still no one else can quite do it), it would shake in a wobbly kind of way that looked like it was floating. I liked the spoon but it really looked funny so mom and dad would try to give me other things to hold but hey never matched he “skake-a-bility” of the spoon so eventually, they just gave in and bought several spoons for me. And guess what ?. What I was doing actually has a name:
Self-stimulation…..
Self stimulation is a key aspect of autistic children (Remember, I had Asberger’s Syndrome also which is a form of Autism). While other children and adults cannot understand why the autistic child does this behavior it is something they are rather obsessive about and seemingly unable to stop. This behavior is also commonly referred to as stimming. Stimming is a repetitive behavior that keeps the child engaged in their own world but serves to stimulate their senses in some form or another. It is often used to help the child regulate themselves in a stressful environment.
Many children with autism have difficulties interpreting sensory information. Whether the world seems to rough, too bright, too loud or any other number of things, it all boils down to their minds not properly coping with the world around them. Stimming is one way that the autistic child can bring back control of their world. These behaviors are the child's way of working out things in their world that don't seem right or to cope with a stressful situation. The positive side to stimming, is it is a calming behavior which help the child to regulate themselves and overcome a situation of stress or upset.
Over time, I became known for my spoon – in fact when I went to the hospital this last time, my spoon and Gameboy (more on he Gameboy in a minute) were in the admission notes and several times mom and dad found out hat one of my Dr’s learned I was there because they saw the familiar name and the mention of the spoon confirmed that it was me……
So I guess the spoon was as much a part of me as your glasses might be to you. Mom and dad always had one with them …they even had to take it through airport security because I had to have it -- and I’ll bet you didn’t know that a mixing spoon is considered a deadly weapon by some of the Bradley Airport security people … So, mom and dad just couldn’t NOT put one with me.
The “infamous spoon” – I could never really use a “binky” (pacifier), my tongue was too big for my mouth (a Down Syndrome trai) and a “binky” just kept slipping out so when I wanted something in my mouth, I would chew on my fingers. And I do mean chew….not put my finger in my mouth, but actually chew, and to such a point that I still had calluses, from chewing, on my finger when I passed. One day while mom was cooking dinner, and after having tried everything imaginable to stop me from chewing my finger, mom just pulled my hand from my mouth and handed me the spoon she was using. I ofcourse put it right into my mouth and liked it but more importantly, it had what mom and dad started to refer to as “skake-a-bility”. If I held it just right (still no one else can quite do it), it would shake in a wobbly kind of way that looked like it was floating. I liked the spoon but it really looked funny so mom and dad would try to give me other things to hold but hey never matched he “skake-a-bility” of the spoon so eventually, they just gave in and bought several spoons for me. And guess what ?. What I was doing actually has a name:
Self-stimulation…..
Self stimulation is a key aspect of autistic children (Remember, I had Asberger’s Syndrome also which is a form of Autism). While other children and adults cannot understand why the autistic child does this behavior it is something they are rather obsessive about and seemingly unable to stop. This behavior is also commonly referred to as stimming. Stimming is a repetitive behavior that keeps the child engaged in their own world but serves to stimulate their senses in some form or another. It is often used to help the child regulate themselves in a stressful environment.
Many children with autism have difficulties interpreting sensory information. Whether the world seems to rough, too bright, too loud or any other number of things, it all boils down to their minds not properly coping with the world around them. Stimming is one way that the autistic child can bring back control of their world. These behaviors are the child's way of working out things in their world that don't seem right or to cope with a stressful situation. The positive side to stimming, is it is a calming behavior which help the child to regulate themselves and overcome a situation of stress or upset.
Over time, I became known for my spoon – in fact when I went to the hospital this last time, my spoon and Gameboy (more on he Gameboy in a minute) were in the admission notes and several times mom and dad found out hat one of my Dr’s learned I was there because they saw the familiar name and the mention of the spoon confirmed that it was me……
So I guess the spoon was as much a part of me as your glasses might be to you. Mom and dad always had one with them …they even had to take it through airport security because I had to have it -- and I’ll bet you didn’t know that a mixing spoon is considered a deadly weapon by some of the Bradley Airport security people … So, mom and dad just couldn’t NOT put one with me.
Thursday, October 22, 2009
My first years ... continued
While I enjoyed my first few years, I probably caused some distress in the rest of the family and I never acknowledged it. Mom and dad were in a constant state of “heightened sensitivity”. Medically there was constant concern for what would happen next in the medical arena - It seemed that every week a new medical issue would come to the surface. Developmentally, they were either dealing with DMR, dealing with Birth to Three or getting ready for the Board of Education. And generally, because everything had to revolve around me. Think about this, I don’t think mom and dad were every anywhere, together without me there too.
That had to have an impact on sis in the first few years and on all my sibs after that.
That had to have an impact on sis in the first few years and on all my sibs after that.
Wednesday, October 21, 2009
My first years
I was an interesting child those first years (actually, I was always interesting). Right from the beginning, I was different even within the confines of my disabilities.
A neighbor of ours had Down Syndrome. Mom and dad always thought that I would grow up to be like him – self sufficient within the constraints of my affliction although delayed - but I had different plans.
In the beginning, mom and dad joined support groups like PATH (Parents Available To Help) and the CDSC (Connecticut Down Syndrome Congress). They enjoyed the company but each time it became apparent that we didn’t quite belong. The other kids would be crawling around, sometimes walking, experimenting, reasonably attentive and cognizant of the other kids (always of course within the constraints of their disabilities) … Their parents would talk about the advances their kids had made and their accomplishments since the last meeting. But mom and dad could never really participate in those discussions because I pretty much stayed the same and even regressed a little. As other kids played, I would sit in my chair, head propped up (because I couldn’t hold it up myself) and kind of stare off into space (and of course I had to be fed every hour). Mom and dad would eventually realize that I was “special” even within the description of the “special needs” of a group and so those groups became a point of depression for them. Slowly, we lost touch with the people in the groups. Slowly, mom and dad stopped talking with other parents – if it wasn’t depressing for them, it was depressing for the person on the other end of the phone…. Parents who just had a Down Syndrome child wanted to hear about the “wonderful” and “all but normal kid down the street”, not me who never progressed and had innumerable health issues. Eventually, we even lost touch with that little girl from NBSCU and her parents.
Thinking back, not all that long before I was born, a Down Syndrome baby would have automatically gone to an “institution” unless the parents fought it. But when I was born, the drive to keep kids like me at home and mainstream us was really just “finding it’s legs” and everything was “rah-rah” for the handicapped and “let’s show everyone how ‘special’ special kids are and how they enrich your lives so everywhere you turned there was an uplifting story about “kid’s like these”. Dad remembers a movie that was on shortly after I was born, Tyne Daly as a mother of a Down Syndrome baby who was very much like me but Tyne Daly, being the ever wonderful and devoted mother, gave up her career to spend hours bathing her child in Jello… and …. Low and behold, the baby instantly realized it full potential as a contributing member of society. The makers of Jello were no doubt pleased and dad used to think that if only he had bathed me in Jello ….…….Wouldn’t have made any difference though since, on top of my other issues, I turned out to be Texture Sensitive too. I probably would have been traumatized instead of helped by the experience.
Speaking of movies, when I was 18 months old, I was also a TV star. A local TV station (WTNH) was doing a special on disabled children and had contacted Dr. LaCamera, because of his work in Birth-to-Three, for a referral to a family with a special needs child. He referred them to us and in 1993, I wound up with a twenty minute segment in a show called “Beyond the Dream”. (You would laugh now if you saw it: for starters, dad had hair!.)
I enjoyed my first years….I loved it when Marty, Rhonda and Ruth came. And mom hadn’t worked since she and dad learned I was “special” way back in the first trimester. Mom was always there. Dad was there as much as work allowed. Sis was always there to play with me ……
A neighbor of ours had Down Syndrome. Mom and dad always thought that I would grow up to be like him – self sufficient within the constraints of my affliction although delayed - but I had different plans.
In the beginning, mom and dad joined support groups like PATH (Parents Available To Help) and the CDSC (Connecticut Down Syndrome Congress). They enjoyed the company but each time it became apparent that we didn’t quite belong. The other kids would be crawling around, sometimes walking, experimenting, reasonably attentive and cognizant of the other kids (always of course within the constraints of their disabilities) … Their parents would talk about the advances their kids had made and their accomplishments since the last meeting. But mom and dad could never really participate in those discussions because I pretty much stayed the same and even regressed a little. As other kids played, I would sit in my chair, head propped up (because I couldn’t hold it up myself) and kind of stare off into space (and of course I had to be fed every hour). Mom and dad would eventually realize that I was “special” even within the description of the “special needs” of a group and so those groups became a point of depression for them. Slowly, we lost touch with the people in the groups. Slowly, mom and dad stopped talking with other parents – if it wasn’t depressing for them, it was depressing for the person on the other end of the phone…. Parents who just had a Down Syndrome child wanted to hear about the “wonderful” and “all but normal kid down the street”, not me who never progressed and had innumerable health issues. Eventually, we even lost touch with that little girl from NBSCU and her parents.
Thinking back, not all that long before I was born, a Down Syndrome baby would have automatically gone to an “institution” unless the parents fought it. But when I was born, the drive to keep kids like me at home and mainstream us was really just “finding it’s legs” and everything was “rah-rah” for the handicapped and “let’s show everyone how ‘special’ special kids are and how they enrich your lives so everywhere you turned there was an uplifting story about “kid’s like these”. Dad remembers a movie that was on shortly after I was born, Tyne Daly as a mother of a Down Syndrome baby who was very much like me but Tyne Daly, being the ever wonderful and devoted mother, gave up her career to spend hours bathing her child in Jello… and …. Low and behold, the baby instantly realized it full potential as a contributing member of society. The makers of Jello were no doubt pleased and dad used to think that if only he had bathed me in Jello ….…….Wouldn’t have made any difference though since, on top of my other issues, I turned out to be Texture Sensitive too. I probably would have been traumatized instead of helped by the experience.
Speaking of movies, when I was 18 months old, I was also a TV star. A local TV station (WTNH) was doing a special on disabled children and had contacted Dr. LaCamera, because of his work in Birth-to-Three, for a referral to a family with a special needs child. He referred them to us and in 1993, I wound up with a twenty minute segment in a show called “Beyond the Dream”. (You would laugh now if you saw it: for starters, dad had hair!.)
I enjoyed my first years….I loved it when Marty, Rhonda and Ruth came. And mom hadn’t worked since she and dad learned I was “special” way back in the first trimester. Mom was always there. Dad was there as much as work allowed. Sis was always there to play with me ……
Tuesday, October 20, 2009
Once home ...
Once I got home, I set straight to work on building a following:
Mom and dad started for me at the NBSCU. Another baby named Isabelle had been born very close to my birthday but unlike my mom and dad, hers didn’t know beforehand that she had Down Syndrome. Mom and dad, with the nurse’s permission, left a note for them in her bassinette and we became friends. She and I both were in the Birth-to-three program. Birth-to-three started as soon as I was home and I was stable enough for it. A number of people came to see me from Birth-to-three, for various reasons, but by the time I was six months old, I had narrowed the number down to three people I always kept close to my heart. They were my favorite (non-family) people and even though they didn’t know each other when I came on board, they became friends through me.
My first loves:
I became very close too with my many Dr’s. - and there were many - but to name the special ones……Dr’s LaCamera and Wessel were my pediatricians when I was born and Dr. Anderson joined thier practice very soon after I was born. As time went on, Dr’s LaCamera and Wessell retired from the practice but Dr LaCamera kept tabs on me through his work at my school, the ACES Village Street School, as he had through his work with Birth-to-Three. I kept them hoping with my usual "well-care" visits to thier office, fairly regular visits to the emergency room for one reason or another, ongoing issues like allergies and projectile vomiting, and generally “failing to thrive”.
Dr’s Gould and Mann joined what eventually became Whitney Pediatrics and I of course worked my magic on them too. By the time they joined, I had leveled off a little so I let them “off the hook” a bit by comparison, but I still kept them hopping. I can't remeber he last time I saw Dr. Wessell but the others all visited me and followed me through my stay at the hospital and to the end.
My other favorite Dr. was Dr. Kveton. I saw him for my ears from the time I was 3, right up till the time I passed. I even had my own room with Dr. Kveton, not that they gave me my own room at his office, I just decided that I would take it. And since I had decided that this was "my room", I would not go into another one ! I liked Dr. DeLuca too…he was my orthopedist from as far back as I can remember and always watched my hips and monitored my ambulation. There were other Dr's too, at Yale and private practice, but these are the Dr's that I saw most often and knew me best.
Mom and dad started for me at the NBSCU. Another baby named Isabelle had been born very close to my birthday but unlike my mom and dad, hers didn’t know beforehand that she had Down Syndrome. Mom and dad, with the nurse’s permission, left a note for them in her bassinette and we became friends. She and I both were in the Birth-to-three program. Birth-to-three started as soon as I was home and I was stable enough for it. A number of people came to see me from Birth-to-three, for various reasons, but by the time I was six months old, I had narrowed the number down to three people I always kept close to my heart. They were my favorite (non-family) people and even though they didn’t know each other when I came on board, they became friends through me.
My first loves:
- Marty (Teacher)
- Rhonda (Speech)
- Ruth (PT)
For two and a half years, until I “graduated” from birth-to-three and into the regular school system,we were really tight friends.
My other favorite Dr. was Dr. Kveton. I saw him for my ears from the time I was 3, right up till the time I passed. I even had my own room with Dr. Kveton, not that they gave me my own room at his office, I just decided that I would take it. And since I had decided that this was "my room", I would not go into another one ! I liked Dr. DeLuca too…he was my orthopedist from as far back as I can remember and always watched my hips and monitored my ambulation. There were other Dr's too, at Yale and private practice, but these are the Dr's that I saw most often and knew me best.
Sunday, October 18, 2009
I am sorry I took a break
I am sorry to have taken a break from this - I (Dad) didn't realize the therapeutic value I was receiving from doing this blog until I stopped. Remembering what happened so many years ago keeps me from thinking of how awful it is losing Andrew.
People have said that there is no pain like losing a child. I, in my ever logical thinking, thought that the pain would just be more intense than that of losing a parent (I've lost both) and as it was with losing a parent, the pain would slowly fade.
Most people lose their parents after they have moved out on their own and the day to day presence of the parent has already been diminished. They have comfortably settled into a routine of talking on the phone and seeing the parent in some convenient routine but the parent is no longer there when they wake nor when they go to sleep. When the parent passes, they think it a blessing because the parent's suffering has ended and the parent has led a long and happy life. Even if they don't believe this, it is said to them so often in the days following the death that they accept it as truth.
I am here to say there is no comparison.
My pain at losing Andrew transcends any other emotional pain I have ever experienced or ever will (except, God forbid, to lose another child). It is a whole new world of hurt, there is no depth or duration – it is constant and completely different in a way I find hard to describe…….. and the pain hasn’t faded, it has intensified.
As each day goes by, I miss Andrew more. At the strangest times, his image will flash in front of my minds eye for the briefest second and immediately I remember that I will never see him again. Suddenly and for no reason, I will hear his “voice” in the white noise of the day and immediately I remember that I will never hear him again. I will touch or smell or see something that reminds me of him and suddenly an image from the hospital, until then forgotten, floods over me and I choke up. My mind isn’t filtering out the “unpleasant” memories and leaving only the pleasant. Instead, it is retaining all the memories and bringing them to the surface one at a time.
And to all this add that mom and I don’t share the same pain. This I can reason out in perfect logic. I have pain in the realization that the things mom will always have memories of, I can never experience.
I am really just beginning to remember all that happened from the time I realized that Andrew would die until some time last week. I've remembered bits and pieces all along – the moment he died, a special friend at the wake, putting the Pall on his casket – but other things are just now emerging into my memory and all I can do is ask “why did my boy die ?”
People have said that there is no pain like losing a child. I, in my ever logical thinking, thought that the pain would just be more intense than that of losing a parent (I've lost both) and as it was with losing a parent, the pain would slowly fade.
Most people lose their parents after they have moved out on their own and the day to day presence of the parent has already been diminished. They have comfortably settled into a routine of talking on the phone and seeing the parent in some convenient routine but the parent is no longer there when they wake nor when they go to sleep. When the parent passes, they think it a blessing because the parent's suffering has ended and the parent has led a long and happy life. Even if they don't believe this, it is said to them so often in the days following the death that they accept it as truth.
I am here to say there is no comparison.
My pain at losing Andrew transcends any other emotional pain I have ever experienced or ever will (except, God forbid, to lose another child). It is a whole new world of hurt, there is no depth or duration – it is constant and completely different in a way I find hard to describe…….. and the pain hasn’t faded, it has intensified.
As each day goes by, I miss Andrew more. At the strangest times, his image will flash in front of my minds eye for the briefest second and immediately I remember that I will never see him again. Suddenly and for no reason, I will hear his “voice” in the white noise of the day and immediately I remember that I will never hear him again. I will touch or smell or see something that reminds me of him and suddenly an image from the hospital, until then forgotten, floods over me and I choke up. My mind isn’t filtering out the “unpleasant” memories and leaving only the pleasant. Instead, it is retaining all the memories and bringing them to the surface one at a time.
And to all this add that mom and I don’t share the same pain. This I can reason out in perfect logic. I have pain in the realization that the things mom will always have memories of, I can never experience.
I am really just beginning to remember all that happened from the time I realized that Andrew would die until some time last week. I've remembered bits and pieces all along – the moment he died, a special friend at the wake, putting the Pall on his casket – but other things are just now emerging into my memory and all I can do is ask “why did my boy die ?”
Friday, October 16, 2009
Wednesday, October 14, 2009
Failure to thrive - the sequel
Failure to Thrive
“Failure to thrive is a delay in physical growth and weight gain that can lead to delays in development and maturation.”
“Sometimes failure to thrive is caused by a medical disorder in the child. The disorder can be as minor as difficulty chewing or swallowing (as with a cleft lip or cleft palate). Medical disorders, such as gastroesophageal reflux, narrowing of the esophagus, or intestinal malabsorption, may also affect a child's ability to retain, absorb, or process food. “
Over these first few weeks, if I wasn’t being fed and burped, I was on my way to, at, or, on my way home from a Dr… Gastrointestinal, eye, ear, pediatrician – name a discipline and I was seeing one of them. My “spitting up” had become projectile vomiting (from gastroesophageal reflux) and I turned a lovely shade of yellow to boot.
We never found out why, but I developed Jaundice bad enough to require me going back to the hospital for a week. This wasn’t that run of the mill “you need sunlight” jaundice, it was the “oh my god, what happened to you” jaundice. I was school bus yellow for a week and then, as suddenly as it appeared, it was gone.
As I said, we never did find out why
“Failure to thrive is a delay in physical growth and weight gain that can lead to delays in development and maturation.”
“Sometimes failure to thrive is caused by a medical disorder in the child. The disorder can be as minor as difficulty chewing or swallowing (as with a cleft lip or cleft palate). Medical disorders, such as gastroesophageal reflux, narrowing of the esophagus, or intestinal malabsorption, may also affect a child's ability to retain, absorb, or process food. “
Over these first few weeks, if I wasn’t being fed and burped, I was on my way to, at, or, on my way home from a Dr… Gastrointestinal, eye, ear, pediatrician – name a discipline and I was seeing one of them. My “spitting up” had become projectile vomiting (from gastroesophageal reflux) and I turned a lovely shade of yellow to boot.
We never found out why, but I developed Jaundice bad enough to require me going back to the hospital for a week. This wasn’t that run of the mill “you need sunlight” jaundice, it was the “oh my god, what happened to you” jaundice. I was school bus yellow for a week and then, as suddenly as it appeared, it was gone.
As I said, we never did find out why
Homeward bound
And finally the big day came. I was going home !. Oddly, it was August 30 th – my original due date. Mom and dad came with a special “going home outfit” and a carrier and we were packed up and ready to go … but first, I got to see sis. I was so happy and so was she. After all that time of just seeing each other thru that tiny window, we could finally touch each other.
We all loaded into he car and off we went toward home. I had never seen the outside… it was great. I still had problems holding my head up so my view was a little limited by which way my head flopped but still .. I had never seen any of this before.
Once home, mom and dad and sis showed me around. I liked my room – it was bright and sunny and comfortable, but I spent most of my time with mom or sis because I had to be fed every hour.. And as I said, I didn’t like to be burped so it was more like this:
Feed me
Step one: one ounce of Nutramigen – 15 minutes
(A formula for babies with Food Allergies and Protein Sensitivity)
Step two: Burp me – 30 minutes
Step three: Clean up – 5 minutes
Step four: Spit up – 5 minutes
Step Five: Clean up again – 5 minutes
Start over……
And so it went until it was bedtime.
Now bedtime was interesting also. I had never been in the dark !. In NBSCU, the lights were always on !When mom put me in my cradle and turned out the lights, I was terrified. Over the next few weeks, I learned to accept the dark but it took a lot of mom and dad sleeping with the lights on to get there.
And I was still classified as “failure to thrive”…..
We all loaded into he car and off we went toward home. I had never seen the outside… it was great. I still had problems holding my head up so my view was a little limited by which way my head flopped but still .. I had never seen any of this before.
Once home, mom and dad and sis showed me around. I liked my room – it was bright and sunny and comfortable, but I spent most of my time with mom or sis because I had to be fed every hour.. And as I said, I didn’t like to be burped so it was more like this:
Feed me
Step one: one ounce of Nutramigen – 15 minutes
(A formula for babies with Food Allergies and Protein Sensitivity)
Step two: Burp me – 30 minutes
Step three: Clean up – 5 minutes
Step four: Spit up – 5 minutes
Step Five: Clean up again – 5 minutes
Start over……
And so it went until it was bedtime.
Now bedtime was interesting also. I had never been in the dark !. In NBSCU, the lights were always on !When mom put me in my cradle and turned out the lights, I was terrified. Over the next few weeks, I learned to accept the dark but it took a lot of mom and dad sleeping with the lights on to get there.
And I was still classified as “failure to thrive”…..
Tuesday, October 13, 2009
Failure to thrive
Most of my time in NBSCU, I was classified as “Failure to thrive”. I had to have my surgery– I couldn’t eat until then – which of course kept me in NBSCU while I waited, and even after that I couldn’t leave until I could suck and swallow, but overall I was considered failing to thrive.
Finally after 5 weeks, I had my surgery to fix the duodenal atresia. Up until then, I had been fed through a feeding tube and I hadn’t even tried to suck or swallow, so after my surgery when they finally gave me food in my mouth, I didn’t know what to do with it. This was all too new.
And I didn’t do so well after surgery either. I third-spaced.
“Normally, body fluids are distributed between the interstitial compartment (tissues) and intravascular compartment ( plasma). In third-spacing, body fluids collect in a "third" body compartment that isn't normally perfused with fluids. For example, with severe burns, fluids may pool in the burn site and cause depletion of the fluids in the first and second compartments. With patients who undergo long, difficult operations in large surgical fields, third-space fluids may collect and the patient may become intravascularly depleted despite large volumes of intravenous fluid and blood replacement.“
I looked like the Michelin Man. And then got pneumonia and started to really go down hill.
I remember that mom and dad had the “dreaded conversation” with the Dr’s but fortunately, I never got quite that bad. I did like to scare everyone though….
One time when dad was holding me when all the alarms went off . Alarms going off weren’t really that unusual because I was “desating” (decreasing oxygen saturation in my blood) all the time, but this time ….. I didn’t come back and the alarms just kept going off. The nurses came running and took me from dad and worked on me for what seemed like forever. Finally I was rosy pink again but it turned out that I almost died.
I had fun in NBSCU. I kept everyone running but after a while, I improved and eventually I could almost eat too. I had to be fed every hour, no more than an ounce and burped in between…and I did not like to be burped….but I was eating so I could go home.
Finally after 5 weeks, I had my surgery to fix the duodenal atresia. Up until then, I had been fed through a feeding tube and I hadn’t even tried to suck or swallow, so after my surgery when they finally gave me food in my mouth, I didn’t know what to do with it. This was all too new.
And I didn’t do so well after surgery either. I third-spaced.
“Normally, body fluids are distributed between the interstitial compartment (tissues) and intravascular compartment ( plasma). In third-spacing, body fluids collect in a "third" body compartment that isn't normally perfused with fluids. For example, with severe burns, fluids may pool in the burn site and cause depletion of the fluids in the first and second compartments. With patients who undergo long, difficult operations in large surgical fields, third-space fluids may collect and the patient may become intravascularly depleted despite large volumes of intravenous fluid and blood replacement.“
I looked like the Michelin Man. And then got pneumonia and started to really go down hill.
I remember that mom and dad had the “dreaded conversation” with the Dr’s but fortunately, I never got quite that bad. I did like to scare everyone though….
One time when dad was holding me when all the alarms went off . Alarms going off weren’t really that unusual because I was “desating” (decreasing oxygen saturation in my blood) all the time, but this time ….. I didn’t come back and the alarms just kept going off. The nurses came running and took me from dad and worked on me for what seemed like forever. Finally I was rosy pink again but it turned out that I almost died.
I had fun in NBSCU. I kept everyone running but after a while, I improved and eventually I could almost eat too. I had to be fed every hour, no more than an ounce and burped in between…and I did not like to be burped….but I was eating so I could go home.
Monday, October 12, 2009
Hood ornaments
After a few days, they moved me to “the annex”, where the less-than-critical kids were, but nothing else changed except that they gave me my very own “hood ornament” – an IV in the vein in my forehead – Dad said I looked like the Pontiac Indian.
I had been born at 3:27 a.m. on July 3. Mom went home a few days later but came to stay with me every minute she could. Dad’s work heard about me and basically gave him off from work “ until Andrew comes home”. He only had to go into the office for 390 minutes a day and then he could leave so he too stayed with me all that he could. They would take sis to daycare in the morning so that her world would stay as stable as possible and dad would go into the office, then they would come and stay all day until sis had to be picked up. After that, they would have dinner and one of them would come back to stay late into the night.
Mom would always stroke my head and make a cross on my forehead with her thumb and dad would stroke my temple with his thumb, things they started to do again in my last weeks. My eyes weren’t always open, in the beginning or in the end, but when I felt them do that I knew they loved me and I relaxed regardless of what was going on or how afraid I was.
Anyway, they would put there arms thru the portals in the incubator and stroke my head and put their hands near mine so I could wrap my tiny hand around one of their fingers.
After a few days, as long as mom or dad were real careful of the tubes and wires, they could take me out of my incubator and hold me.
Sis hadn’t had chicken pox (more about that later also) and could bring the virus into the NBSCU from an exposure that she was incubating. Because of this, she couldn’t come into the NBSCU as chicken pox could kill me and the other babies in the unit, so instead, even though I got to look at her thru a small window, I didn’t know her touch until I was two months old biologically. That was so unfair, not only to me but to sis and I never really knew until my funeral how much she hurt to not be able to touch me all that time. I loved her so much and she couldn’t even touch me. Here’s a secret though, mom never had te chicken pox either and when the staff asked about sis and then forbade her from coming in, mom quickly decided to not tell them about herself. It was too late for sis but at least mom wasn’t barred.
Oh, you may be wondering what this “biological” stuff is… well, with us premature kids, we have two ages: our biological which is how long since we were actually born, and our developmental which is how long since the date that would have been our birth day.
When I was finally was held by sis, I was biologically 2 months old but was developmentally just born ! Cool, eh ?
I had been born at 3:27 a.m. on July 3. Mom went home a few days later but came to stay with me every minute she could. Dad’s work heard about me and basically gave him off from work “ until Andrew comes home”. He only had to go into the office for 390 minutes a day and then he could leave so he too stayed with me all that he could. They would take sis to daycare in the morning so that her world would stay as stable as possible and dad would go into the office, then they would come and stay all day until sis had to be picked up. After that, they would have dinner and one of them would come back to stay late into the night.
Mom would always stroke my head and make a cross on my forehead with her thumb and dad would stroke my temple with his thumb, things they started to do again in my last weeks. My eyes weren’t always open, in the beginning or in the end, but when I felt them do that I knew they loved me and I relaxed regardless of what was going on or how afraid I was.
Anyway, they would put there arms thru the portals in the incubator and stroke my head and put their hands near mine so I could wrap my tiny hand around one of their fingers.
After a few days, as long as mom or dad were real careful of the tubes and wires, they could take me out of my incubator and hold me.
Sis hadn’t had chicken pox (more about that later also) and could bring the virus into the NBSCU from an exposure that she was incubating. Because of this, she couldn’t come into the NBSCU as chicken pox could kill me and the other babies in the unit, so instead, even though I got to look at her thru a small window, I didn’t know her touch until I was two months old biologically. That was so unfair, not only to me but to sis and I never really knew until my funeral how much she hurt to not be able to touch me all that time. I loved her so much and she couldn’t even touch me. Here’s a secret though, mom never had te chicken pox either and when the staff asked about sis and then forbade her from coming in, mom quickly decided to not tell them about herself. It was too late for sis but at least mom wasn’t barred.
Oh, you may be wondering what this “biological” stuff is… well, with us premature kids, we have two ages: our biological which is how long since we were actually born, and our developmental which is how long since the date that would have been our birth day.
When I was finally was held by sis, I was biologically 2 months old but was developmentally just born ! Cool, eh ?
Sunday, October 11, 2009
NBSCU
The next two months (six weeks actually) are hard for me to remember, so much was going on….
When I arrived in the NBSCU, I was immediately put on CPAP since my lungs weren’t fully developed. It was funny, kind of like a clear plastic cake tray cover with a hole in it for my neck, and they stuck me in an incubator. I got the “honored” position of “the hot seat ‘ or “position one” , meaning I was the sickest baby in the NBSCU.
Needless to say, I was trying to pull tubes from day .
That first day, dad came to see me and mom came down from her room. We finally met and there was an instant superglue-like bond. All day long a whole bunch of strangers kept coming to see me, some were family folks but more were Dr’s and nurses. I just wanted them to leave me alone and I fought them as much as I could.
Mom and dad were being visited also, by these family people, Dr’s, nurses and a whole lot of other people telling them that I was “special” and why. Finally, late into the evening, they got a chance to talk, how mom knew that life was never going to be the same and they joked about the night before…how all that was missing from my arrival were the fireworks. And just as dad said that, the New Haven July Fourth Fireworks display began over the harbor …
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My arrival was complete ….
When I arrived in the NBSCU, I was immediately put on CPAP since my lungs weren’t fully developed. It was funny, kind of like a clear plastic cake tray cover with a hole in it for my neck, and they stuck me in an incubator. I got the “honored” position of “the hot seat ‘ or “position one” , meaning I was the sickest baby in the NBSCU.
Needless to say, I was trying to pull tubes from day .
That first day, dad came to see me and mom came down from her room. We finally met and there was an instant superglue-like bond. All day long a whole bunch of strangers kept coming to see me, some were family folks but more were Dr’s and nurses. I just wanted them to leave me alone and I fought them as much as I could.
Mom and dad were being visited also, by these family people, Dr’s, nurses and a whole lot of other people telling them that I was “special” and why. Finally, late into the evening, they got a chance to talk, how mom knew that life was never going to be the same and they joked about the night before…how all that was missing from my arrival were the fireworks. And just as dad said that, the New Haven July Fourth Fireworks display began over the harbor …
My arrival was complete ….
Saturday, October 10, 2009
So there we were ...
So here we are. July 3, 1991. My arrival was quite the production.
I made my debut with all the fanfare I could muster. I was premature, my birth was fast and full of surprises (You should have seen the look on the OBGYN’s face). Mom went medication free since there wasn’t time to administer any but, given my condition, meds couldn’t have been used anyway.
We determined later that mom didn’t realize she was in labor for two reasons: She never had labor pains with sis (really. Only one small “cramp” in the Trumbull Arthur's) and it wasn’t a typical labor…. No hormones, no internal clock going off … just that the uterus couldn’t stretch any more and was trying to empty itself …. So I guess it really was “cramping” after all.
And mom’s water never broke until the OBGYN started to “poke around” and then it broke in a flooding gush. And me being as small as I was, I pretty much just surfed the wave into the outside world.
So there we were:
I was technically a still birth - no heartbeat and ,as dad recalled later, a lovely shade of grey....but I was revived quickly by the newborn staff.
The tear of the cord and the abruption combined to put mom at great risk even though she and dad didn’t know it at the time.
Dad just buzzed along on caffeine and nicotine and tried to fathom what was going on.
Mom said later when she got to the hospital and while dad was banging on the (wrong) door, that she looked up into the sky and thought to herself that life was changing forever.
She was right ....
I made my debut with all the fanfare I could muster. I was premature, my birth was fast and full of surprises (You should have seen the look on the OBGYN’s face). Mom went medication free since there wasn’t time to administer any but, given my condition, meds couldn’t have been used anyway.
We determined later that mom didn’t realize she was in labor for two reasons: She never had labor pains with sis (really. Only one small “cramp” in the Trumbull Arthur's) and it wasn’t a typical labor…. No hormones, no internal clock going off … just that the uterus couldn’t stretch any more and was trying to empty itself …. So I guess it really was “cramping” after all.
And mom’s water never broke until the OBGYN started to “poke around” and then it broke in a flooding gush. And me being as small as I was, I pretty much just surfed the wave into the outside world.
So there we were:
I was technically a still birth - no heartbeat and ,as dad recalled later, a lovely shade of grey....but I was revived quickly by the newborn staff.
The tear of the cord and the abruption combined to put mom at great risk even though she and dad didn’t know it at the time.
Dad just buzzed along on caffeine and nicotine and tried to fathom what was going on.
Mom said later when she got to the hospital and while dad was banging on the (wrong) door, that she looked up into the sky and thought to herself that life was changing forever.
She was right ....
Friday, October 9, 2009
Tribute
So, I started life by winning special needs lottery. There are so many kids worse off than I was but still, I had more than a fair share of issues. I was premature, had Down Syndrome, Asberger's Syndrome (a form of Autism), brain damage from asphixiation at birth and severe retardation to name just the major things.
Before I tell you more I must tell you this:
My mom is the most remarkable women on this green earth. My father is good but I owe my 18 years to my mom, not dad. I owe the women who lived her life around me and my needs and kept me alive and well and happy every minute of my life.
I ended life as an 18 year-old with limited capabilities. Mentally, I was no more than 18 months old. I never talked. I never walked. I never expressed an opinion. I banged my chest if I was angry and I had a few sounds that sometimes seemed to mean something. I wore diapers and thought it was hilarious to make loud noises, particularly if someone reacted.
I lived a rich and full life. I was loved more than I can explain and I paid that back, with interest, in the only way I could: Unconditional love
But I digress again... back to my story
Before I tell you more I must tell you this:
My mom is the most remarkable women on this green earth. My father is good but I owe my 18 years to my mom, not dad. I owe the women who lived her life around me and my needs and kept me alive and well and happy every minute of my life.
I ended life as an 18 year-old with limited capabilities. Mentally, I was no more than 18 months old. I never talked. I never walked. I never expressed an opinion. I banged my chest if I was angry and I had a few sounds that sometimes seemed to mean something. I wore diapers and thought it was hilarious to make loud noises, particularly if someone reacted.
I lived a rich and full life. I was loved more than I can explain and I paid that back, with interest, in the only way I could: Unconditional love
But I digress again... back to my story
Thursday, October 8, 2009
Mom's issues
So, poor mom and dad barely got a chance to even see what I looked like.....
And what I looked like was a miniature baby doll, a little under 3 1/4 pounds. By no means the smallest baby to survive but net yet "fully baked" as they say.
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The Newborn team got me "stable" and wisked me off to the Newborn Intensive Care Unit before mom even really saw me. Dad could at least walk around and got a few quick glimpses of me while the "team" worked their magic but poor mom ...
And as fast as I had arrived, I was gone, taken to the NBSCU.
Mom had problems too but that was barely noticed. She had abrupted and to make matters worse, I had a short cord that tore when I arrived. Mom, covered in bloody amniotic fluid, could only lie there and watch, and hope that I would be ok. At mom's request, the hospital priest had been called to bless me but the priest she had spoken to earlier was on vacation so Father how-dare-you-wake-me-at-3-am came instead. And finally, mom was taken care of while dad and Father how-dare-you-wake-me-at-3-am walked to NBSCU to bless me.
So, mom's needs were set aside for me....the first of more times than I can count.
As I think of that night and remember my time in the NBSCU, I realize I can't help but draw parallells....how similar the extremes of my life.
I started life with almost 2 months in NBSCU not knowing from day to day if I would survive ... and I ended my life after 2 months in PICU not knowing from day to day if I would survive.
And what I looked like was a miniature baby doll, a little under 3 1/4 pounds. By no means the smallest baby to survive but net yet "fully baked" as they say.
The Newborn team got me "stable" and wisked me off to the Newborn Intensive Care Unit before mom even really saw me. Dad could at least walk around and got a few quick glimpses of me while the "team" worked their magic but poor mom ...
And as fast as I had arrived, I was gone, taken to the NBSCU.
Mom had problems too but that was barely noticed. She had abrupted and to make matters worse, I had a short cord that tore when I arrived. Mom, covered in bloody amniotic fluid, could only lie there and watch, and hope that I would be ok. At mom's request, the hospital priest had been called to bless me but the priest she had spoken to earlier was on vacation so Father how-dare-you-wake-me-at-3-am came instead. And finally, mom was taken care of while dad and Father how-dare-you-wake-me-at-3-am walked to NBSCU to bless me.
So, mom's needs were set aside for me....the first of more times than I can count.
As I think of that night and remember my time in the NBSCU, I realize I can't help but draw parallells....how similar the extremes of my life.
I started life with almost 2 months in NBSCU not knowing from day to day if I would survive ... and I ended my life after 2 months in PICU not knowing from day to day if I would survive.
Wednesday, October 7, 2009
Finding Nemo
I guess I should have explained all the "Finding Nemo" Stuff.
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I was a Disney fan ... actually, I had no choice - it is a family requirement, but more on that later....and I loved my animated movies. One of my favorites was "Finding Nemo" so naturally, as soon as I could watch a movie at the hospital, mom tracked down Nemo and popped it into the dvd player.
And there it stayed and played.....repeatedly......over and over...... from morning till night ..... did I mention that it played constantly ?
(Actually it was shut off once in a while when dad put on Fox News, he claims, to raise my blood pressure.)
But back to Nemo. Finding Nemo pretty much ran non-stop from the time I "came to" until I passed on, and was playing when I took my exit. The family already knew it vebatim from my watching it at home, and I made sure the YNHH medical staff knew it just as well before I left, and now it is a part of my legacy ...Marlin, Dory and Nemo will forever be a symbol of my presence to those who knew me.
But back to my "story" ....
And there it stayed and played.....repeatedly......over and over...... from morning till night ..... did I mention that it played constantly ?
(Actually it was shut off once in a while when dad put on Fox News, he claims, to raise my blood pressure.)
But back to Nemo. Finding Nemo pretty much ran non-stop from the time I "came to" until I passed on, and was playing when I took my exit. The family already knew it vebatim from my watching it at home, and I made sure the YNHH medical staff knew it just as well before I left, and now it is a part of my legacy ...Marlin, Dory and Nemo will forever be a symbol of my presence to those who knew me.
But back to my "story" ....
Tuesday, October 6, 2009
At the hospital
When we got to the hospital, after dad went to he wrong door, after they sent us up to maternity, we met a lovely nurse who immediately asked mom "why do you think the baby will be born tonite ?" and "does it hurt ?". Now I would have taken moms inability to stand and the distorted look of pain on her face as sufficient to preclude asking the obvious but the nurse asked anyway.
Those of you who have seen "The Exorcist" can envision what happened next: mom's head rotated 360 degrees while she spewed a very vivid description of the pain. The nurse performed a very brief exam and announced that I would be born "within minutes". We were all rushed to a birthing room, mom got into bed and while dad washed his hands, the Dr. arrived and "took a look". As dad came out of the bathroom and the Dr. turned to the maternity nurse to say something, I made my move. The amniotic fluid came out like a geyser and went everywhere ... the Dr. was covered, mom was covered, the room was covered (Dad escaped) and just as quickly, I came out.
Bill Cosby does a routine where he sits, mimicing a baseball catcher pounding his mitt, while waiting for the baby to shoot out. That is how it was with me .. I think the Dr. almost dropped me it was so fast. Equally fast the room filled with people who had been called to "join the fun" ... the emergency staff from "newborn", complete with their toolboxes of equipment. I didn't know so many people could fit in that small room...... And all the while, they all "worked" on me and poor mom and dad barely got a chance to even see what I looked like.....
Those of you who have seen "The Exorcist" can envision what happened next: mom's head rotated 360 degrees while she spewed a very vivid description of the pain. The nurse performed a very brief exam and announced that I would be born "within minutes". We were all rushed to a birthing room, mom got into bed and while dad washed his hands, the Dr. arrived and "took a look". As dad came out of the bathroom and the Dr. turned to the maternity nurse to say something, I made my move. The amniotic fluid came out like a geyser and went everywhere ... the Dr. was covered, mom was covered, the room was covered (Dad escaped) and just as quickly, I came out.
Bill Cosby does a routine where he sits, mimicing a baseball catcher pounding his mitt, while waiting for the baby to shoot out. That is how it was with me .. I think the Dr. almost dropped me it was so fast. Equally fast the room filled with people who had been called to "join the fun" ... the emergency staff from "newborn", complete with their toolboxes of equipment. I didn't know so many people could fit in that small room...... And all the while, they all "worked" on me and poor mom and dad barely got a chance to even see what I looked like.....
Monday, October 5, 2009
The start of "labor"
Cramping indeed. Didn't they know I was about to make my presence known ?
Around 2 a.m., mom was still "cramping". The pains were inconsistent in all regards: strength, duration, time in between, location. There was nothing to indicate labor and everything to indicate a bad stomach ache.
After what was now 4 hours of this and innumerable calls to the Dr., dad decided it was time to go to the hospital because, as he told the Dr. "either this is labor or there is something very very wrong". After calling my aunts and grandmother....guess whoever got there first could watch sis... off we went .. mom kind of waddled to the car and they set off for the hospital.
I was almost named Peabody for the Peabody Museum at Yale because as Dad was driving by it, mom realized that, like it or not that, I was going to be born tonight. It was obvious to dad also that tonight would be the night but for a totally different reason.
You have to picture this... Mom is the kind of driver that is an accident waiting to happen, not that she drives badly but exactly the opposite. She obeys every law stringently and drives exactly the speed limit .. both of which qualify you as a road hazard in CT. ... so when dad got on the main road and mom said "you'd better run the lights !", he knew this was serious.
He floored it, blowing the horn and flashing the lights, all the way through downtown New Haven and up to the main entrance at Yale New Haven. I imagine it would have been better if he had gone to the emergency room where they were ready for such things, and I am sure the poor security guard at the main entrance eventually forgave him, but to the main entrance he went. After banging on the door and mumbling something unintelligible about "labor" and "premature", they took mom up to maternity but I wasn't sure I wanted to wait that long .....
Around 2 a.m., mom was still "cramping". The pains were inconsistent in all regards: strength, duration, time in between, location. There was nothing to indicate labor and everything to indicate a bad stomach ache.
After what was now 4 hours of this and innumerable calls to the Dr., dad decided it was time to go to the hospital because, as he told the Dr. "either this is labor or there is something very very wrong". After calling my aunts and grandmother....guess whoever got there first could watch sis... off we went .. mom kind of waddled to the car and they set off for the hospital.
I was almost named Peabody for the Peabody Museum at Yale because as Dad was driving by it, mom realized that, like it or not that, I was going to be born tonight. It was obvious to dad also that tonight would be the night but for a totally different reason.
You have to picture this... Mom is the kind of driver that is an accident waiting to happen, not that she drives badly but exactly the opposite. She obeys every law stringently and drives exactly the speed limit .. both of which qualify you as a road hazard in CT. ... so when dad got on the main road and mom said "you'd better run the lights !", he knew this was serious.
He floored it, blowing the horn and flashing the lights, all the way through downtown New Haven and up to the main entrance at Yale New Haven. I imagine it would have been better if he had gone to the emergency room where they were ready for such things, and I am sure the poor security guard at the main entrance eventually forgave him, but to the main entrance he went. After banging on the door and mumbling something unintelligible about "labor" and "premature", they took mom up to maternity but I wasn't sure I wanted to wait that long .....
Sunday, October 4, 2009
I am born
So come July of 1991 and I am happily lounging around in utero. Mom is immense but has had regular checkups and ultrasounds. Everything looks good.
It has been confirmed that I had duodenal atresia but they are going to fix it after I am born. Mom and Dad have been talking to the Dr's all the way along to make sure that everything goes smoothly when I decide it is time to be born. Sadly but necessarily, they have talked to the priest also to make sure I can be blessed if anything goes wrong when I make my debut. Mom's obgyn had to get privileges at YNHH because he doesn't normally practice there, opting instead for ST. Rapheal's. But it is very possible and even somewhat likely that I am going to require care at YNHH and mom and dad want to just go there rather than have to transport there later.
Anyway, on July third mom asked dad to look at the stretch marks on her belly. Dad has said he remembers thinking to himself that "human skin can't stretch any more than this". Shortly after that, mom started having pains - not labor, just pains. They know now that it was labor but mom never had any real pain with Sis and it was so far before my due date, that they thought it was just intestinal cramping. Regardless, dad kept calling the Dr. just to make sure there wasn't something wrong and the Dr also thought it was cramping, so not to worry.
Wrong ! ...
It has been confirmed that I had duodenal atresia but they are going to fix it after I am born. Mom and Dad have been talking to the Dr's all the way along to make sure that everything goes smoothly when I decide it is time to be born. Sadly but necessarily, they have talked to the priest also to make sure I can be blessed if anything goes wrong when I make my debut. Mom's obgyn had to get privileges at YNHH because he doesn't normally practice there, opting instead for ST. Rapheal's. But it is very possible and even somewhat likely that I am going to require care at YNHH and mom and dad want to just go there rather than have to transport there later.
Anyway, on July third mom asked dad to look at the stretch marks on her belly. Dad has said he remembers thinking to himself that "human skin can't stretch any more than this". Shortly after that, mom started having pains - not labor, just pains. They know now that it was labor but mom never had any real pain with Sis and it was so far before my due date, that they thought it was just intestinal cramping. Regardless, dad kept calling the Dr. just to make sure there wasn't something wrong and the Dr also thought it was cramping, so not to worry.
Wrong ! ...
Saturday, October 3, 2009
Hydramnious
Hydramnious:
"an abnormal condition of pregnancy characterized by an excess of amniotic fluid. It occurs in less than 1% of pregnancies and is diagnosed by palpation, ultrasound, or radiographic examination. It is associated with maternal disorders, including toxemia of pregnancy and diabetes mellitus, and some fetal disorders, including anomalies of the GI tract, respiratory tract, and cardiovascular system, which may interfere with normal exchange of amniotic fluid. Fetal hydrops and multiple gestation are also associated with the condition. The incidence of premature rupture of the membranes, premature labor, and perinatal mortality is increased.
Periodic amniocentesis may be necessary."
Early in the second trimester, us babies start to swallow the amniotic fluid, pass it through our kidneys, and excrete it as urine, which we then swallows again. This keeps just the right amount of fluid
in the amniotic sac. With me, the system broke down and he amniotic fluid just kept increasing in volume.
What this all meant was that mom got HUGE.
"an abnormal condition of pregnancy characterized by an excess of amniotic fluid. It occurs in less than 1% of pregnancies and is diagnosed by palpation, ultrasound, or radiographic examination. It is associated with maternal disorders, including toxemia of pregnancy and diabetes mellitus, and some fetal disorders, including anomalies of the GI tract, respiratory tract, and cardiovascular system, which may interfere with normal exchange of amniotic fluid. Fetal hydrops and multiple gestation are also associated with the condition. The incidence of premature rupture of the membranes, premature labor, and perinatal mortality is increased.
Periodic amniocentesis may be necessary."
Early in the second trimester, us babies start to swallow the amniotic fluid, pass it through our kidneys, and excrete it as urine, which we then swallows again. This keeps just the right amount of fluid
in the amniotic sac. With me, the system broke down and he amniotic fluid just kept increasing in volume.
What this all meant was that mom got HUGE.
Friday, October 2, 2009
My arrival
I never did anything the "normal" way and my arrival proved that. My parents knew I had issues almost from the beginning when a routine blood test came back elevated. The doctor wanted an amniocentisous but that carried a reasonable risk of miscarriage so mom went instead for an ultrasound. Back then ultrasounds were less advanced and couldn't "officially" be used to diagnose Down Syndrome but mom opted for it regardless and had a "high-level" done.
After it was done, I remember hearing the doctor (Dr. NoBedside-manner was his name I think) say that "there are seven indicators that ultrasound can identify and your baby has six of them" and he left. Mom and dad were dazed. They went immediately to see some other Dr for more information but the talking was all muted and hard to understand. It was like there was something muffling it. Mom said later she felt as if she was sitting in a bubble and she could hear and see everything ... but it was like nothing was clear...and thinking "don't all these people know what's going on ?"
Anyway, Mom and Dad decided early on that their God would be the only one to decide if I made it to birth and beyond... no abortion for me and if there were issues after I was born there would be no heroics. But now that they knew I had Down Syndrome on board, and even with the risk of miscarriage, mom did have an amnio - mostly for medical reasons since the ultrasound had indicated something that could be an issue when I arrived. The amnio confirmed that there was indeed a problem ... my stomach wasn't connected to my intestines !
This was going to be interesting. Mom could look forward to hydramnious !
After it was done, I remember hearing the doctor (Dr. NoBedside-manner was his name I think) say that "there are seven indicators that ultrasound can identify and your baby has six of them" and he left. Mom and dad were dazed. They went immediately to see some other Dr for more information but the talking was all muted and hard to understand. It was like there was something muffling it. Mom said later she felt as if she was sitting in a bubble and she could hear and see everything ... but it was like nothing was clear...and thinking "don't all these people know what's going on ?"
Anyway, Mom and Dad decided early on that their God would be the only one to decide if I made it to birth and beyond... no abortion for me and if there were issues after I was born there would be no heroics. But now that they knew I had Down Syndrome on board, and even with the risk of miscarriage, mom did have an amnio - mostly for medical reasons since the ultrasound had indicated something that could be an issue when I arrived. The amnio confirmed that there was indeed a problem ... my stomach wasn't connected to my intestines !
This was going to be interesting. Mom could look forward to hydramnious !
Thursday, October 1, 2009
Why ?
Eighteen years ago, my God gave my parents a very special gift....Me !
They of course didn't know how special I was, all they knew of me and my complexities were from "Life goes on" and the "special" people working at the grocery store. Oh, when they learned I was "special", they studied up on me. and all the things that I could do in spite of my problems but they didn't suspect that I had a lot of to teach them and that they were going to be my loving students.
Today, I am with my God. I spent two month's in the hospital trying to decide if it was time to leave my family. Had I taught them all they need to know ? Would they be ok without me ?
Only my God knew the answers and He hadn't told me so I "hung in there" and waited - for the sign, the approval, the indication that my job was done......
They of course didn't know how special I was, all they knew of me and my complexities were from "Life goes on" and the "special" people working at the grocery store. Oh, when they learned I was "special", they studied up on me. and all the things that I could do in spite of my problems but they didn't suspect that I had a lot of to teach them and that they were going to be my loving students.
Today, I am with my God. I spent two month's in the hospital trying to decide if it was time to leave my family. Had I taught them all they need to know ? Would they be ok without me ?
Only my God knew the answers and He hadn't told me so I "hung in there" and waited - for the sign, the approval, the indication that my job was done......
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