ARTICLE:  Disability 101

My girlfriend’s son, Sam, is a cute, happy, energetic 6 year old.  He loves dinosaurs,  Sesame Street, and grilled cheese sandwiches.   Sometimes he gets really mad and throws awful tantrums.  Other times he’s so sweet his mother wonders how she got so lucky with such an amazing child.  When he grows up he wants to be a fireman and an astronaut and a doctor.  Sam also has cerebral palsy.   The funny thing is that a lot of people have a really hard time getting past Sam’s wheelchair.  They see the chair, not the child and it’s really too bad because Sam is a terrific kid! 

In my medical practice all of the children I treat have a disability of one kind or another so I’m around wheelchairs, walkers, crutches, and artificial limbs all day everyday.  I realize this is not a common experience and recently I began wondering how many people have even one friend who has a disability?   Do you?  Does your child?  Have you ever made small talk with a person in a wheelchair or had coffee with someone who had an obvious impairment?  It’s my hunch that most people will answer no to these questions.  It’s normal to feel uncomfortable when things aren’t familiar so I’ve decided to open the dialogue about this seldom discussed topic and devote this month’s column to some thoughts on disability. 

1.  One of the strangest things that happens to a person with a disability is that sometimes they’re treated as if they’re invisible.  Let me give you an example.  I was with a group at a very nice restaurant as the guest of the CEO of a well respected, non-profit organization.  He makes a good living, is intelligent, and does a great job of running the charity.  He was born with almost no arms and legs so he uses hooks on his arms, has artificial legs, and uses a scooter to get around.  He was our host, he made the reservation, he paid for dinner, but during our entire evening together the waiter looked past our host to the person seated next to him and asked what our host would like to eat, or drink, etc.  When the CEO spoke up for himself the waiter raised his voice and spoke more slowly.  Maybe the waiter thought that this man was so unusual that his brains had been located in his missing limbs.  It made me wonder where the waiter’s brains were.  The big message is: talk to a person who has a disability just like you would anyone else. 

2.  A lot of people say that when someone uses wheelchair they are “bound” to it.  A child who uses a wheelchair isn’t “bound” to it anymore than I am bound to my glasses.  I definitely need them because I can’t see well without them, but my glasses don’t bind me, they assist me.  The same is true for a child who uses a wheelchair.    

3.  I know the name game can be confusing for people outside of a particular group who are trying their hardest to keep up.  Things can change so quickly, but the preferred description is “a child with a disability” or “a child with autism” instead of “a disabled child” or “an autistic child.”   The first description makes the disability only a part of the child’s experience, the second description makes it the entire child.  The language changes as the disability community grows and becomes more self-empowered.  So mentally retarded became cognitively impaired which became intellectually disabled.  Crippled became handicapped which became disabled which became a person with a disability.   The easiest way to know what language to use to discuss a child’s condition is to listen to the words the parents use to describe it. 

4.  One of the most difficult things for parents who have a child with a disability is watching their child’s peers pass them by.  Parents often feel a loss when other children walk, but their child doesn’t, or other children talk, but their child doesn’t, or other children start to read, but their child doesn’t.  For some parents early childhood seems like a series of losses but there are some amazing breakthroughs.  My girlfriend’s son started talking after four years of using sign language, gestures, and guessing.  One of my patients became potty trained after 7 years of diapers and pull ups.  Seven years!   Sometimes the child who you see in the grocery throwing a tantrum is the same child who couldn’t have held it together for 5 minutes in a convenience store a few months before.  This time it took a full 20 minutes before the tantrums started.  The child may look disruptive to other shoppers, but it’s a victory for the parent who sees progress.  For parents who have a child with a disability it’s patience, and baby steps, and celebrating small, but significant accomplishments.

I once heard someone say that everyone has a disability, some are just more visible than others, and if you think about it it’s true.   Having a child with a disability isn’t what Sam’s mom hoped for during her pregnancy, but he’s the child she got and she wouldn’t trade him for anything.  There are over 4.5 million children growing up with a disability in our country and their parents don’t want pity, just understanding.  When it comes to their child they may have to change their expectations or at least modify the timeline, and by doing that they create a new normal for their family and carve out a space for their child to reach his or her full potential.  And that’s what every good parent wants. 

This column is not intended to be medical advice. Consult your personal physician for specific health concerns.

ARTICLE:  Is your child obese, but you can’t see it? 

Carson (not his real name) was a charming four year old who was very attached to his parents and his parents clearly adored him.  Awhile ago I was having a serious discussion with his mom and dad because Carson had high blood pressure, sleep apnea (trouble breathing when he falls asleep), and early signs of diabetes.   His parents were appropriately concerned about these very serious health problems that are usually seen in overweight adults.  In the course of our discussion I explained that Carson’s obesity was a major factor in his illnesses and I asked them for their thoughts about his weight.  They looked at each other a bit puzzled and said “we think he’s about right.”  This was a jaw dropping moment for me because little Carson, at four years old, weighed 105 pounds!  His tummy hung over his pants, his cheeks were plump and round, and his movements were more slow and lumbering than a typical child his age.  Any casual observer would have recognized his obesity, but his parents didn’t.   How could this be? Was this denial? Did they really not think it was unusual that he was wearing size 12 Husky pants at age four?

As I began to explore this issue I learned that Carson’s parents are not unique.  In an article published in the journal Pediatrics in 2003 mothers were asked to describe their child’s weight and almost one in three mothers of children who were actually overweight described their child as “about the right weight”.  In another article published in 2006 in the same journal parents were shown several sketches that represented children of varying weights from underweight to overweight.  The parents were asked to choose a sketch that best represented their child’s body appearance and then to describe their child’s weight in words.  The majority of parents whose child was obese correctly circled a drawing of an obese child, but almost 2 out of 3 of these parents described their child as “about the right weight”.  It is interesting that these parents recognized their child’s body shape, but they just didn’t see it as extreme.   The problem is obvious.  If parents of obese children don’t believe there is a problem they are very unlikely to help their child lose weight.

The first step in determining if your child is getting too heavy is to ask your doctor to calculate a BMI.  BMI stands for ”body mass index” and it is the primary measure used to determine obesity in adults.   Unfortunately, BMI alone doesn’t give enough information for children because in children body fat is different for boys and girls and it changes with age.  So after calculating the BMI your doctor will plot the number on a “BMI for age growth chart”.  It is essential to use this chart because the definition of obesity changes with age.  In fact, the same BMI can be obese at one age and healthy at another. That’s because obesity in children is determined by comparing children to their peers of the same age and sex.  A child whose BMI is more than 95% of children of the same age is considered obese.  A child with a BMI that is between 85% and 95% of other children would be considered “at risk for overweight.”   For example, a 10 year old boy with a BMI of 23 is considered obese while a 15 year old with the same BMI is considered a healthy weight.  Using adult standards without the chart would suggest that both boys are a healthy weight.  If you’re confused don’t worry.  Your doctor can explain where your child’s BMI falls on the chart.  Then if it’s too high you and your doctor can develop a plan to help your child become healthier. 

Carson’s parents in the story above were surprised to learn that his BMI of 32 meant he was heavier than 99% of other four year olds and was definitely obese.  For them this new information along with his health problems were a call to action.  They immediately began limiting his high calorie snacks and started walking him to school instead of driving.    They enrolled him in park district sports and cut way back on fast foods.  And today Carson’s health is improving. 

The above studies don’t tell us why parents find it difficult to describe their child as obese, but one thing is clear: knowing a child’s BMI for age is important even for parents who don’t think their little one is obese. Remember, almost two out of three mothers of obese children don’t think so either and as Carson’s parents learned the risks of not knowing can be serious.  Only accurate information and a solid plan can give every child a chance to grow up with the best health possible.

This column is not intended to be medical advice. Consult your personal physician for specific health concerns.