It may sound like I'm whining today. Maybe I am. However everything I'm about to say is true. It may be a truth that most people don't want to face or admit to, but that doesn't make it false.
The plain truth is having a child with special needs is hard.
I don't think medical professionals understand how hard. Doctors and nurses often understand the science behind a disability without having any grasp of its impact on human lives.They should take a short sensitivity training course focused on talking with the families of children with disabilities.
We've run into a number of insensitive doctors and nurses during our 14+ years as parents of a child with special needs. I'm not discounting those that are kind and compassionate, but they are surprisingly few and far between. Most doctors and specialists don't even bother to call us by name during our appointments. One surgeon called Amanda "munchkin" for years. I thought it was sweet until I heard him call the patient in the next room - and the room after that - munchkin as well. He didn't know any of their names. I don't know if the study of medicine drives the humanity out of doctors or if they enter the profession because they are able to see people as bodies rather than personalities.
Today I took Amanda to the Genetics Clinic at Children's Healthcare of Atlanta (CHOA). It was a dismal experience. Not because we got bad news - or any news at all - but due to the staff's attitude. The nurse practitioner actually said, "I wasted 3 -1/2 hours reading your daughter's file and since I have a photographic memory now I'll never be able to forget it."
Genetic testing is harmless - a cheek swab or a minor blood sample. Nothing compared to what Amanda has been through already. We were hoping to find other instances of the same deletion to possibly predict Amanda's potential medical problems going forward. We hoped that a more detailed analysis might explain why she was so much more impacted by this deletion than the few other cases we've discovered. The nurse's comment was uncalled for and unprofessional.
I wanted to ask why she bothered to read the complete file if she saw the original genetic test results and decided not to pursue more advanced testing at this point. Or why she hadn't cancelled the appointment based on this decision so we didn't "waste" 3+ hours of our time as well?
It wasn't the first insensitive comment I've heard from a medical professional, just the most recent.
One of the first, and most memorable, was the Children's Healthcare neurosurgeon
who told us Amanda "would always be funny looking" when she was an infant.
Or the original CHOA geneticist who was actually so excited to discover that Amanda had a rare chromosomal anomaly that she called us to deliver the news right before Christmas. In her excitement to find a unique specimen she didn't think about our daughter as a person or us as a family. She never considered how the news would forever alter Christmas for our family. No letters to Santa, no running to see presents under the tree...
Learning that your child has a condition that will result in permanent mental or physical impairment is the emotional equivalent of being told your parent is dying. Your family changes irrevocably in that moment. Your life will never be the same. You grieve the loss of the healthy child you expected almost as if the child had died.
And while you have a living child, the rest of your life will be difficult, expensive and confusing. You will have to learn more than other parents about development, medicine, therapy and biology. You will read about things only doctors typically know. You will have to do things you never considered doing like changing a feeding tube or fixing a wheelchair. And it will never, ever end. It will change. Some things may improve, but it will never end.
Whenever you get a new diagnosis, no matter what it is (autism, mental retardation, scoliosis, etc.), the pain kicks in again. You grieve again. Sometimes you see it coming; other times its a kick in the gut.
I remember taking Amanda for a routine hearing screen. She sat in the booth, looking around, but completely unresponsive to the noises being generated. She didn't turn toward the sounds. She didn't even move her eyes in the correct direction. She didn't react at all. I didn't realize that she was supposed to.
After a few minutes, the audiologist turned to me and said,"I'm sorry to tell you that your daughter is completely deaf." No forewarning. No softening the blow. Just her cold, dispassionate assessment of the situation.
I sobbed uncontrollably during the drive home. It seemed like Amanda had been robbed of something so fundamental. To never hear her parent's voices, to never listen to music or marvel at the sound of crickets and frogs at night seemed desperately unfair when she already had so little. It was only when Kevin pointed out that if we used the remote to "click" the TV on Amanda would turn to look at it that I realized the audiologist was wrong. It wasn't that Amanda was deaf; she just wasn't interested in the noises.
While I was relieved by his observation I had to question what made the audiologist so certain - and what made her deliver the news with such a lack of empathy.
I came to the conclusion that she had no concept of the bigger picture. I doubt medical professionals know how many doctors and therapists the average family of a child with special needs sees, how many appointments they attend, how much bad news they have already heard during their child's short life. Every new diagnosis seems like another nail in the coffin. Every treatment denied is a new heart ache.
Today the nurse practitioner said, "Its not like her genes are going to change" to justify her denial. Did she think I didn't already know that? She made no effort to consider what the past 14+ years of my life - and Amanda's - had been like despite having allegedly spent hours reading her file.
Not for a second did she consider why, after more than a decade, we would come back looking for answers. She didn't know how depressing it can be to change diapers on your teenager. How painful it is to be feeding a 14 year old baby food when other kids her age are going out for pizza with their friends. How frustrating it is to look into a future that will never, ever change. To know that you will never have a normal family vacation, that you can never go to the store or a movie without hiring a caregiver, that you will be spending thousands of dollars a year on diapers for the rest of your life.
Forget the emotional impact of daily life, consider the feelings the facts might create in a parent.
She didn't think about what it was like to have child that didn't take her first steps until she was five and a half years old. She never wondered what it would be like to never hear your child's first word. She didn't consider how we as a family had managed nearly a dozen surgeries. The nurse didn't think about trips to the emergency room for falls, broken bones or seizures. She didn't take into consideration the number of times I've seen my daughter cyanotic, the times I've listened to her struggle to breathe, the times she's been on oxygen or the horror of seeing a crash cart raced into her hospital room when her heart stopped. Even though every one of those facts was in the file she told me she had memorized.
She should have realized that all I was looking for was, not a solution, but a glimmer of hope in an otherwise hopeless future.
Having a child with special needs is extremely stressful. Imagine the normal difficulties of a marriage and raising kids then add in the extra burden of a child in a wheelchair, completely dependent on you for everything. Imagine a 150 pound adult that you lift and carry and care for as if they are an infant for decades. Imagine the expense of diapers going on for years and years and years. Imagine the thousands miles you drive to go to four therapy appointments a week just hoping your child will be able to walk or talk or feed themselves Imagine not being able to find care for that child so you never get a minute to yourself. Imagine having to give up your job, your marriage, your friends because you can't leave that child alone for more than a minute and no one else can or will care for them.
Medical professionals need to see the reality behind the 15 minutes they spend with us as patients and parents to what happens during the other 23 hours and 45 minutes of that day. Without an insight into our lives it is no wonder they treat us more like lab specimens or inconveniences than people struggling to survive a very brutal life.
I've collected the following comments* made by medical professionals from other parents of children with special needs:
"One of the worst comments that was written about me was "mother does not like clinician's attitude". Well, duh, throw a diagnosis at me, go on about how this is the youngest child you've ever seen with this syndrome gleefully send off medical students to research it (and not ask permission) AND then it gets thrown on us that my son doesn't even have this syndrome. Think I was entitled not to like the attitude."
"'...an IVF baby - well what do you expect cause you weren't meant to have a baby'. The 2nd was 'Oh, you had IVF and you spent all that money - such a shame that you got a disabled one'. "
The plain truth is having a child with special needs is hard.
I don't think medical professionals understand how hard. Doctors and nurses often understand the science behind a disability without having any grasp of its impact on human lives.They should take a short sensitivity training course focused on talking with the families of children with disabilities.
We've run into a number of insensitive doctors and nurses during our 14+ years as parents of a child with special needs. I'm not discounting those that are kind and compassionate, but they are surprisingly few and far between. Most doctors and specialists don't even bother to call us by name during our appointments. One surgeon called Amanda "munchkin" for years. I thought it was sweet until I heard him call the patient in the next room - and the room after that - munchkin as well. He didn't know any of their names. I don't know if the study of medicine drives the humanity out of doctors or if they enter the profession because they are able to see people as bodies rather than personalities.
Today I took Amanda to the Genetics Clinic at Children's Healthcare of Atlanta (CHOA). It was a dismal experience. Not because we got bad news - or any news at all - but due to the staff's attitude. The nurse practitioner actually said, "I wasted 3 -1/2 hours reading your daughter's file and since I have a photographic memory now I'll never be able to forget it."
Genetic testing is harmless - a cheek swab or a minor blood sample. Nothing compared to what Amanda has been through already. We were hoping to find other instances of the same deletion to possibly predict Amanda's potential medical problems going forward. We hoped that a more detailed analysis might explain why she was so much more impacted by this deletion than the few other cases we've discovered. The nurse's comment was uncalled for and unprofessional.
I wanted to ask why she bothered to read the complete file if she saw the original genetic test results and decided not to pursue more advanced testing at this point. Or why she hadn't cancelled the appointment based on this decision so we didn't "waste" 3+ hours of our time as well?
It wasn't the first insensitive comment I've heard from a medical professional, just the most recent.
One of the first, and most memorable, was the Children's Healthcare neurosurgeon
who told us Amanda "would always be funny looking" when she was an infant.
Or the original CHOA geneticist who was actually so excited to discover that Amanda had a rare chromosomal anomaly that she called us to deliver the news right before Christmas. In her excitement to find a unique specimen she didn't think about our daughter as a person or us as a family. She never considered how the news would forever alter Christmas for our family. No letters to Santa, no running to see presents under the tree...
Learning that your child has a condition that will result in permanent mental or physical impairment is the emotional equivalent of being told your parent is dying. Your family changes irrevocably in that moment. Your life will never be the same. You grieve the loss of the healthy child you expected almost as if the child had died.
And while you have a living child, the rest of your life will be difficult, expensive and confusing. You will have to learn more than other parents about development, medicine, therapy and biology. You will read about things only doctors typically know. You will have to do things you never considered doing like changing a feeding tube or fixing a wheelchair. And it will never, ever end. It will change. Some things may improve, but it will never end.
Whenever you get a new diagnosis, no matter what it is (autism, mental retardation, scoliosis, etc.), the pain kicks in again. You grieve again. Sometimes you see it coming; other times its a kick in the gut.
I remember taking Amanda for a routine hearing screen. She sat in the booth, looking around, but completely unresponsive to the noises being generated. She didn't turn toward the sounds. She didn't even move her eyes in the correct direction. She didn't react at all. I didn't realize that she was supposed to.
After a few minutes, the audiologist turned to me and said,"I'm sorry to tell you that your daughter is completely deaf." No forewarning. No softening the blow. Just her cold, dispassionate assessment of the situation.
I sobbed uncontrollably during the drive home. It seemed like Amanda had been robbed of something so fundamental. To never hear her parent's voices, to never listen to music or marvel at the sound of crickets and frogs at night seemed desperately unfair when she already had so little. It was only when Kevin pointed out that if we used the remote to "click" the TV on Amanda would turn to look at it that I realized the audiologist was wrong. It wasn't that Amanda was deaf; she just wasn't interested in the noises.
While I was relieved by his observation I had to question what made the audiologist so certain - and what made her deliver the news with such a lack of empathy.
I came to the conclusion that she had no concept of the bigger picture. I doubt medical professionals know how many doctors and therapists the average family of a child with special needs sees, how many appointments they attend, how much bad news they have already heard during their child's short life. Every new diagnosis seems like another nail in the coffin. Every treatment denied is a new heart ache.
Today the nurse practitioner said, "Its not like her genes are going to change" to justify her denial. Did she think I didn't already know that? She made no effort to consider what the past 14+ years of my life - and Amanda's - had been like despite having allegedly spent hours reading her file.
Not for a second did she consider why, after more than a decade, we would come back looking for answers. She didn't know how depressing it can be to change diapers on your teenager. How painful it is to be feeding a 14 year old baby food when other kids her age are going out for pizza with their friends. How frustrating it is to look into a future that will never, ever change. To know that you will never have a normal family vacation, that you can never go to the store or a movie without hiring a caregiver, that you will be spending thousands of dollars a year on diapers for the rest of your life.
Forget the emotional impact of daily life, consider the feelings the facts might create in a parent.
She didn't think about what it was like to have child that didn't take her first steps until she was five and a half years old. She never wondered what it would be like to never hear your child's first word. She didn't consider how we as a family had managed nearly a dozen surgeries. The nurse didn't think about trips to the emergency room for falls, broken bones or seizures. She didn't take into consideration the number of times I've seen my daughter cyanotic, the times I've listened to her struggle to breathe, the times she's been on oxygen or the horror of seeing a crash cart raced into her hospital room when her heart stopped. Even though every one of those facts was in the file she told me she had memorized.
She should have realized that all I was looking for was, not a solution, but a glimmer of hope in an otherwise hopeless future.
Having a child with special needs is extremely stressful. Imagine the normal difficulties of a marriage and raising kids then add in the extra burden of a child in a wheelchair, completely dependent on you for everything. Imagine a 150 pound adult that you lift and carry and care for as if they are an infant for decades. Imagine the expense of diapers going on for years and years and years. Imagine the thousands miles you drive to go to four therapy appointments a week just hoping your child will be able to walk or talk or feed themselves Imagine not being able to find care for that child so you never get a minute to yourself. Imagine having to give up your job, your marriage, your friends because you can't leave that child alone for more than a minute and no one else can or will care for them.
Medical professionals need to see the reality behind the 15 minutes they spend with us as patients and parents to what happens during the other 23 hours and 45 minutes of that day. Without an insight into our lives it is no wonder they treat us more like lab specimens or inconveniences than people struggling to survive a very brutal life.
I've collected the following comments* made by medical professionals from other parents of children with special needs:
"One of the worst comments that was written about me was "mother does not like clinician's attitude". Well, duh, throw a diagnosis at me, go on about how this is the youngest child you've ever seen with this syndrome gleefully send off medical students to research it (and not ask permission) AND then it gets thrown on us that my son doesn't even have this syndrome. Think I was entitled not to like the attitude."
"'...an IVF baby - well what do you expect cause you weren't meant to have a baby'. The 2nd was 'Oh, you had IVF and you spent all that money - such a shame that you got a disabled one'. "
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