A Father's Story
This is the one entry that I am most proud of. I wrote this two years ago in the hour before I had to get my kids on the bus for school, and it is probably my most read piece of writing, due to the fact that it was printed in the local newspaper as part of a feature story on autism.
Two years later, I look back on this article and feel like at times I romanticized daily life as the parent of two autistic children. I do talk about the struggles but state that it is all worthwhile. Well, let me tell you, the struggles sometimes don't feel worthwhile. When your son is screaming for hours, you don't feel blessed, you feel angry and depressed. When your daughter wets the couch for the umpteenth time, you don't feel overjoyed that she is still your daughter, you wonder whether you will be changing diapers when your kids are in their twenties.
Don't get the wrong impression. I love my children as much as life itself. But life with two disabled children is fraught with difficulties. If you know someone whose children are disabled, buy them dinner sometime. Chat with them. Give them some respite.
This was originally published on January 17, 2006.
A Father's Story
PART I
Out on the ocean sailing away
I can hardly wait
To see you come of age
But I guess we’ll both just have to be patient
’cause it’s a long way to go
A hard row to hoe
Yes it’s a long way to go
But in the meantime
Before you cross the street
Take my hand
Life is what happens to you
While you’re busy making other plans
Beautiful boy
---John Lennon, “Beautiful Boy”
My wife and I had been married just shy of a year when we discovered that we were expecting our first child. I had developed a brilliant plan. I knew that with the dawning of the year 2000 just around the corner, any child lucky enough to be the first baby born in their communities would make out like bandits. There isn't anything a manufacturer of baby-related goods loves more than to get their name out before the public. So... Laura and I were planning on starting a family anyway- why not make it our goal to have the baby on January 1st, 2000? The Y2K baby. We would be drowning in free diapers, formula and “Y2K” onesies.
Laura's biology didn't cooperate with my material desires, however. We found out we were expecting in June of 1999, with an E.T.A. of February 2000. Man, a guy just can't cut a break :) We were ecstatic. We started our marriage wanting a large family, and now we were going to get our first crack at it. I was so excited that I declared myself the official father of the new millennium, and even had a t-shirt made to commemorate the occasion.
We had decided early on that if we had a son we would name him Matthew. His middle name, Stanley, is in honor of my grandfather Arthur Stanley MacNair Jr., specifically, as well as my great-grandfather and my father, both of whom had the middle name of Stanley. My grandfather was an American Baptist minister for over 50 years. He was a compassionate man, an educated man, an important man who always had time for his family. There aren't that many people in my life who have earned my respect, but Grandpa Mac will always be one of those people. He has been dead for 9 years but I haven't stopped missing him. If my son grows up to be half the man that his great-grandfather was I will be a happy man.
Laura went into the hospital on Monday night, January 31st, 2000. The plan was to induce labor on Tuesday morning. Seeing how nothing was happening that night, I went home to watch pro wrestling (catching a lot of grief from my sister in the process) and came back in the morning. All vestiges of Laura's modesty were stripped away, and the waiting began. Contractions came, contractions went...but no baby. February 1st came and went- the first day.
Second verse- same as the first. Hours went by. Finally, after 30 hours of labor without a baby to show for it, they decided to do a C-section. The baby would be born on Groundhog Day. I cracked a joke to the effect that if the baby saw his shadow there would be six more weeks of pregnancy… but it didn't go over very well. They wheeled her away and came to get me an hour later. When I went into the operating room my wife was on the table, her arms stretched out, a curtain hanging just below her chest. Her abdomen had been cut straight across and the skin stretched open, and there was blood. The Discovery Channel had not adequately prepared me for how cool this would be. I mean, you think you know your spouse, but you really don't know her until you see her guts, you know? A short while later the doctor pulled this purple, rubbery looking human out of the depths, and my first thought was "oh man, there was a human being in there!" Matthew Stanley MacNair entered the world at 2:25 PM, out of a window instead of the door.
Laura and I both had expectations- all new parents do. I wasn’t much different from most new fathers- I wanted to take him to the circus, I wanted to take him to the baseball game, I wanted him to throw the winning pass in the championship football game and sink the buzzer-beating fullcourt shot to win the state tournament. It’s all the rage these days to poke fun at fathers, and consider their parental goals superficial; I’m here to tell you that even though my goals and plans were different from my wife's, they were no less meaningful to me. One of my earliest memories is that of sitting in the nosebleed seats at Oakland Coliseum in the early 70’s, watching the great Oakland A’s of that time, shelling peanuts and having a great time with my grandfather, father and brother. I wanted a chance to relive that experience with my son.
Real-life intruded at the age of two when we noticed he wasn’t talking. No big deal- he’s just a little slow, he’ll get the hang of it. When months went by and he still wasn’t developing a vocabulary, we began to get concerned. You never think about troubles arising when you’re beaming over that 9-pound bundle of joy in the delivery room. (I thought it would be cool to have a ten-pound baby, but Laura… we’ll just say that she didn’t approve of my aspirations.) But Matthew Stanley MacNair was our son. We loved him and would continue to love him no matter what.
If we had a real two cents for every time someone threw in their two cents, we would be rich. Everyone had advice. Everyone knew someone who didn’t talk until they were five or something. We might get a forwarded e-mail, or a newspaper clipping, or a friendly tap on the shoulder after church. I’m a brash and upfront person by nature, and I really wanted to say “Hey! If you want to help us, just invite us for dinner or something. Save the advice. We’ve had enough for one lifetime.” I held my tongue.
At the age of three we started seeing a pediatric neurologist named Max Wiznitzer. Now, I don’t believe in labels. I think labelling a child can restrict how people interact with him or her, and define that child for years to come. I didn’t want people to look askance at my child. I was ready to take up arms against anyone who would give me “the pity look.” Yet I also wanted to know what was wrong. I wanted to hear my child say “I love you Daddy!” I wanted someone to get me a Pepsi from the fridge when I was too lazy to get up :) I wanted… normal. What fathers have experienced for generations gone by.
We received the diagnosis of autism spectrum disorder when Matt was four. My hopes and dreams slowly toppled. I had to develop a different set of goals for my son. When other kids were dressing themselves, I had to help my son get his head and arms through the right hole. When other kids were going out for soccer, my son had to be watched so he wouldn’t take his diaper off in public and put the contents in his mouth. It was a frustrating experience. It didn’t, however, keep me from loving my son. Normal? Next question, please. I had to change my definition of what that was.
PART II
I look for my future
And I feel a peace about my past
Surprised by joy
I see my Father’s mercy in you
You make a fine tutor
And my vocation’s clear at last
I can’t wait to hear you call me something
Or see the world as you do
Rebecca
You are the laughter in your (father’s) eyes
The stars are bright
But not like the shine I’ve taken to you
And who gave who the gift of life
We call it a toss-up
But these changes in me tell the real truth
I’m grateful for you
---Ashley Cleveland, “Rebecca”
In the span of three days, January 21-23, 2001, our car died, I was fired from my job at a chocolate factory, and we discovered that we were expecting our second child. The party line is always “I’ll love my child no matter what sex it is”, and that’s true, but the fact is that I really wanted a girl this time. I wanted a little sweetheart that would wrap me around her little finger. I wanted to braid her hair like my grandfather braided my sisters hair. I wanted a girl that I would one day walk down the aisle… when she was 43, of course :)
Once again we had a name picked out very early on. I wanted to name my daughter Rebecca, after a song I’d heard. No Becky, no Becca or Bekah or any variation- Rebecca. Sweet and feminine. For a middle name we chose Evelyn. Evelyn Jean MacNair was my aunt, my advisor, one of my best friends. She passed away in April of 2001 at the age of 49 after two heart attacks. Rebecca Evelyn’s due date- my birthday. Yes!
Laura’s second C-section caused Rebecca to be born a week early. She weighed in heavier than her brother did, tipping the scales at 9 pounds, 5 ounces. Another week and we would have had ten pounds, I know it :) We took up residence in the birthing suites at EMH, and a few days later Matthew got to meet his little sister. The first thing he did was grasp her head and then twist it sharply. That would be the most interaction he would have with her for two years.
I quickly made plans to reign in her adolescent years. No dating until age 18, of course. When she first brought a boy over I would place a shotgun in the corner. I wouldn’t say anything about it. Just the mere presence of a firearm would get my message across- if you mess with my daughter, you mess with me.
Rebecca’s development progressed at a normal rate for her first two years. She babbled quite frequently and had a personality all her own. And she was as cute as a button! We nicknamed her Rebecca Boo, after a character in the movie “Monsters Inc.” She wasn’t talking right away, but we were sure that she would soon enough, and we would never be able to silence her :)
Yet once again we made the rounds of tests, and paperwork, and specialists, and more paperwork… until September of last year, when Dr. Roberta Bauer of the Children’s Hospital for Rehabilitation diagnosed her with Autism Spectrum Disorder and Pervasive Development Disorder. I can’t put in print what my thoughts were at that moment because I was pretty angry. Not at the doctor, but at the situation. Laura and I had planned to have a large family, but now we weren’t sure if we wanted to become a breeding ground for the special education services of Lorain County. Dating, marriage- would that even happen now? We were cast off into the darkness, a ship without a lighthouse to guide it. What the future held was a secret locked up with the key thrown away.
PART III
And your heart beats so slow
Through the rain and fallen snow
Across the fields of mourning
To a light that’s in the distance
Oh, don't sorrow
No don't weep for tonight
At last I am coming home
I am coming home
---U2, “A Sort of Homecoming”
I am not sorry that Matthew and Rebecca were born. My children are blessings to me and I love them. I wouldn’t have chosen for them to be born with development disorders, but sometimes you just have to play the hand you’re dealt. I try to be an involved father. I go to all of their school conferences and I maintain strong communication with their teachers. I try to make it to school parties in which parents are invited. I attend a parents support group where quite often I am the only man there. I don’t care. When the discussion topics turn personal I just go to the snack table and grab another soda :)
Let me entrust to you a secret, a secret which you can then shout from the mountaintops. Sean MacNair loves his children. No qualifiers. No “if only…” attached to the sentence. I am their father, and if a father is any kind of a man he will be there for his kids. End of discussion. Now if you will excuse me, it is time to put them on the schoolbus.
Have a good day, kids. You make me proud.
Two years later, I look back on this article and feel like at times I romanticized daily life as the parent of two autistic children. I do talk about the struggles but state that it is all worthwhile. Well, let me tell you, the struggles sometimes don't feel worthwhile. When your son is screaming for hours, you don't feel blessed, you feel angry and depressed. When your daughter wets the couch for the umpteenth time, you don't feel overjoyed that she is still your daughter, you wonder whether you will be changing diapers when your kids are in their twenties.
Don't get the wrong impression. I love my children as much as life itself. But life with two disabled children is fraught with difficulties. If you know someone whose children are disabled, buy them dinner sometime. Chat with them. Give them some respite.
This was originally published on January 17, 2006.
A Father's Story
PART I
Out on the ocean sailing away
I can hardly wait
To see you come of age
But I guess we’ll both just have to be patient
’cause it’s a long way to go
A hard row to hoe
Yes it’s a long way to go
But in the meantime
Before you cross the street
Take my hand
Life is what happens to you
While you’re busy making other plans
Beautiful boy
---John Lennon, “Beautiful Boy”
My wife and I had been married just shy of a year when we discovered that we were expecting our first child. I had developed a brilliant plan. I knew that with the dawning of the year 2000 just around the corner, any child lucky enough to be the first baby born in their communities would make out like bandits. There isn't anything a manufacturer of baby-related goods loves more than to get their name out before the public. So... Laura and I were planning on starting a family anyway- why not make it our goal to have the baby on January 1st, 2000? The Y2K baby. We would be drowning in free diapers, formula and “Y2K” onesies.
Laura's biology didn't cooperate with my material desires, however. We found out we were expecting in June of 1999, with an E.T.A. of February 2000. Man, a guy just can't cut a break :) We were ecstatic. We started our marriage wanting a large family, and now we were going to get our first crack at it. I was so excited that I declared myself the official father of the new millennium, and even had a t-shirt made to commemorate the occasion.
We had decided early on that if we had a son we would name him Matthew. His middle name, Stanley, is in honor of my grandfather Arthur Stanley MacNair Jr., specifically, as well as my great-grandfather and my father, both of whom had the middle name of Stanley. My grandfather was an American Baptist minister for over 50 years. He was a compassionate man, an educated man, an important man who always had time for his family. There aren't that many people in my life who have earned my respect, but Grandpa Mac will always be one of those people. He has been dead for 9 years but I haven't stopped missing him. If my son grows up to be half the man that his great-grandfather was I will be a happy man.
Laura went into the hospital on Monday night, January 31st, 2000. The plan was to induce labor on Tuesday morning. Seeing how nothing was happening that night, I went home to watch pro wrestling (catching a lot of grief from my sister in the process) and came back in the morning. All vestiges of Laura's modesty were stripped away, and the waiting began. Contractions came, contractions went...but no baby. February 1st came and went- the first day.
Second verse- same as the first. Hours went by. Finally, after 30 hours of labor without a baby to show for it, they decided to do a C-section. The baby would be born on Groundhog Day. I cracked a joke to the effect that if the baby saw his shadow there would be six more weeks of pregnancy… but it didn't go over very well. They wheeled her away and came to get me an hour later. When I went into the operating room my wife was on the table, her arms stretched out, a curtain hanging just below her chest. Her abdomen had been cut straight across and the skin stretched open, and there was blood. The Discovery Channel had not adequately prepared me for how cool this would be. I mean, you think you know your spouse, but you really don't know her until you see her guts, you know? A short while later the doctor pulled this purple, rubbery looking human out of the depths, and my first thought was "oh man, there was a human being in there!" Matthew Stanley MacNair entered the world at 2:25 PM, out of a window instead of the door.
Laura and I both had expectations- all new parents do. I wasn’t much different from most new fathers- I wanted to take him to the circus, I wanted to take him to the baseball game, I wanted him to throw the winning pass in the championship football game and sink the buzzer-beating fullcourt shot to win the state tournament. It’s all the rage these days to poke fun at fathers, and consider their parental goals superficial; I’m here to tell you that even though my goals and plans were different from my wife's, they were no less meaningful to me. One of my earliest memories is that of sitting in the nosebleed seats at Oakland Coliseum in the early 70’s, watching the great Oakland A’s of that time, shelling peanuts and having a great time with my grandfather, father and brother. I wanted a chance to relive that experience with my son.
Real-life intruded at the age of two when we noticed he wasn’t talking. No big deal- he’s just a little slow, he’ll get the hang of it. When months went by and he still wasn’t developing a vocabulary, we began to get concerned. You never think about troubles arising when you’re beaming over that 9-pound bundle of joy in the delivery room. (I thought it would be cool to have a ten-pound baby, but Laura… we’ll just say that she didn’t approve of my aspirations.) But Matthew Stanley MacNair was our son. We loved him and would continue to love him no matter what.
If we had a real two cents for every time someone threw in their two cents, we would be rich. Everyone had advice. Everyone knew someone who didn’t talk until they were five or something. We might get a forwarded e-mail, or a newspaper clipping, or a friendly tap on the shoulder after church. I’m a brash and upfront person by nature, and I really wanted to say “Hey! If you want to help us, just invite us for dinner or something. Save the advice. We’ve had enough for one lifetime.” I held my tongue.
At the age of three we started seeing a pediatric neurologist named Max Wiznitzer. Now, I don’t believe in labels. I think labelling a child can restrict how people interact with him or her, and define that child for years to come. I didn’t want people to look askance at my child. I was ready to take up arms against anyone who would give me “the pity look.” Yet I also wanted to know what was wrong. I wanted to hear my child say “I love you Daddy!” I wanted someone to get me a Pepsi from the fridge when I was too lazy to get up :) I wanted… normal. What fathers have experienced for generations gone by.
We received the diagnosis of autism spectrum disorder when Matt was four. My hopes and dreams slowly toppled. I had to develop a different set of goals for my son. When other kids were dressing themselves, I had to help my son get his head and arms through the right hole. When other kids were going out for soccer, my son had to be watched so he wouldn’t take his diaper off in public and put the contents in his mouth. It was a frustrating experience. It didn’t, however, keep me from loving my son. Normal? Next question, please. I had to change my definition of what that was.
PART II
I look for my future
And I feel a peace about my past
Surprised by joy
I see my Father’s mercy in you
You make a fine tutor
And my vocation’s clear at last
I can’t wait to hear you call me something
Or see the world as you do
Rebecca
You are the laughter in your (father’s) eyes
The stars are bright
But not like the shine I’ve taken to you
And who gave who the gift of life
We call it a toss-up
But these changes in me tell the real truth
I’m grateful for you
---Ashley Cleveland, “Rebecca”
In the span of three days, January 21-23, 2001, our car died, I was fired from my job at a chocolate factory, and we discovered that we were expecting our second child. The party line is always “I’ll love my child no matter what sex it is”, and that’s true, but the fact is that I really wanted a girl this time. I wanted a little sweetheart that would wrap me around her little finger. I wanted to braid her hair like my grandfather braided my sisters hair. I wanted a girl that I would one day walk down the aisle… when she was 43, of course :)
Once again we had a name picked out very early on. I wanted to name my daughter Rebecca, after a song I’d heard. No Becky, no Becca or Bekah or any variation- Rebecca. Sweet and feminine. For a middle name we chose Evelyn. Evelyn Jean MacNair was my aunt, my advisor, one of my best friends. She passed away in April of 2001 at the age of 49 after two heart attacks. Rebecca Evelyn’s due date- my birthday. Yes!
Laura’s second C-section caused Rebecca to be born a week early. She weighed in heavier than her brother did, tipping the scales at 9 pounds, 5 ounces. Another week and we would have had ten pounds, I know it :) We took up residence in the birthing suites at EMH, and a few days later Matthew got to meet his little sister. The first thing he did was grasp her head and then twist it sharply. That would be the most interaction he would have with her for two years.
I quickly made plans to reign in her adolescent years. No dating until age 18, of course. When she first brought a boy over I would place a shotgun in the corner. I wouldn’t say anything about it. Just the mere presence of a firearm would get my message across- if you mess with my daughter, you mess with me.
Rebecca’s development progressed at a normal rate for her first two years. She babbled quite frequently and had a personality all her own. And she was as cute as a button! We nicknamed her Rebecca Boo, after a character in the movie “Monsters Inc.” She wasn’t talking right away, but we were sure that she would soon enough, and we would never be able to silence her :)
Yet once again we made the rounds of tests, and paperwork, and specialists, and more paperwork… until September of last year, when Dr. Roberta Bauer of the Children’s Hospital for Rehabilitation diagnosed her with Autism Spectrum Disorder and Pervasive Development Disorder. I can’t put in print what my thoughts were at that moment because I was pretty angry. Not at the doctor, but at the situation. Laura and I had planned to have a large family, but now we weren’t sure if we wanted to become a breeding ground for the special education services of Lorain County. Dating, marriage- would that even happen now? We were cast off into the darkness, a ship without a lighthouse to guide it. What the future held was a secret locked up with the key thrown away.
PART III
And your heart beats so slow
Through the rain and fallen snow
Across the fields of mourning
To a light that’s in the distance
Oh, don't sorrow
No don't weep for tonight
At last I am coming home
I am coming home
---U2, “A Sort of Homecoming”
I am not sorry that Matthew and Rebecca were born. My children are blessings to me and I love them. I wouldn’t have chosen for them to be born with development disorders, but sometimes you just have to play the hand you’re dealt. I try to be an involved father. I go to all of their school conferences and I maintain strong communication with their teachers. I try to make it to school parties in which parents are invited. I attend a parents support group where quite often I am the only man there. I don’t care. When the discussion topics turn personal I just go to the snack table and grab another soda :)
Let me entrust to you a secret, a secret which you can then shout from the mountaintops. Sean MacNair loves his children. No qualifiers. No “if only…” attached to the sentence. I am their father, and if a father is any kind of a man he will be there for his kids. End of discussion. Now if you will excuse me, it is time to put them on the schoolbus.
Have a good day, kids. You make me proud.
posted by The Man at 2:26 PM
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