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….
Please .... "Follow" me so I know I am being read
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
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