Saturday, March 29, 2014

Living Life With Congenital Central Hypoventilation Syndrome

An article appeared today in "Things You Don't Know" that states, 

"Congenital central hypoventilation syndrome or CCHS is an extremely rare condition. Some consider it to be one of the most horrific conditions a human being could ever suffer from. The reason is that each and every time you fall asleep could be your last. The condition refers to a sudden stop of all respiratory functions while a person is deep asleep. More simply put the brain just forgets to tell the lungs to breathe."

Because this is the breathing disorder that Caleb is diagnosed with, I would like to respond to the article by
painting a picture of what life really looks like living with an individual with this disorder. 

Within the first 20 minutes of birth, Caleb was not breathing properly and was placed on a ventilator (a machine that provides him with breaths). Two weeks later, once we had the diagnosis of CCHS, a tracheotomy was performed and a trach  was inserted in Caleb's neck. The following two months were spent getting Caleb stabilized and then training Bob and me on all of the equipment so we could bring him home. 

Once home, Caleb was on the ventilator 24 hours a day and that meant that there were no quick trips into the community. Every trip was well planned and would need to include bringing the ventilator, back up battery, emergency bag along with the normal diaper bag. Initially I limited my store trips for when Bob was home, but over time I learned to navigate the store with all of the necessary equipment. Of course there wasn't much room left in the cart for groceries, but I felt a great victory in these outings. This experience was not horrific, but it was cumbersome and tiring.

During the past several years there have been many medical advances. Decades ago, individuals with CCHS would have had to utilize an Iron Lung. To me, that does seem horrific, but nowadays the ventilators are much more portable, the batteries are smaller, and many of our kids are implanted with diaphramatic pacers which stimulate their nerve to breathe. As Caleb grew, we were able to have diaphramatic pacers implanted and they took the place of day time venting.  The pacers gave Caleb great freedom, as he could run around and play like other children, without being attached to a machine. The first time Caleb was able to play in our backyard without the machine was a day I will always remember because or the gratitude I felt. 

The lack of normal response to shallow breathing  requires parents and caregivers to be ever vigilant. For children who do not use the ventilator during the day, the parents must make sure the children do not fall asleep while riding in the car. Children cannot be left alone to play in their rooms and as the children become teenagers, caution must be taken that the teens do not fall asleep while watching television or playing video games. 

Because of the need for a higher level of care and also the need for constant watchfulness, most families have nurses that come on a regular basis. From the time Caleb was discharged from the hospital, we had a nurse that stayed the night with us. The nurse remained awake because if Caleb disconnected from the ventilator, he could die. Caleb continues to have a nurse that accompanies him to school to care for his medical needs and a nurse must be at our house if we are to go out for the evening without Caleb. In Caleb's case and I believe most others, the nurse is paid for through a state waiver program or the insurance company. 

 Apart from the nursing care and the extra equipment, though , kids with CCHS are no different than your children. They laugh and love and enjoy a fulfilling life. Many accomplish much more than the medical profession ever imagined and continue to amaze all of us. So, although the author of this article was not able to share the stories of our amazing children that live with this diagnosis, I thank him for giving us the opportunity to make our story known.

Advocating for Our Children

Learning to advocate for Caleb has taken many years and many different trials.

The advocating began with Caleb's doctors. Twice in Caleb's seventeen years we
have had to change doctors in order to better meet his needs.

The first time we were choosing a course of treatment that our local doctor felt
strongly against. In order to proceed with what we thought best for Caleb, we had
to choose a new pulmonologist. We had been working with this doctor for
almost two years, so leaving felt like a betrayal. I was nervous to call him and tell
him we were switching, but I felt it only fair to give him an explanation. He listened
and cautioned again against the course of action we were taking; he then agreed that a
different doctor would need to be put into place as he was not comfortable proceeding
with our choice of treatment. This was the first time we had to make a choice
contrary to that of a trained professional, and it felt like we were taking a big risk.  What if the course of action that we were choosing turned out to be wrong?  What if this doctor was correct?

The second doctor wasn't quite so agreeable when we left. Caleb had developed kidney stones, and we needed to receive treatment from a Urologist.  Caleb has a very high tolerance for pain, so after the doctor had placed stents for Caleb’s kidney stones and instead of improving, he was still doubled over in pain, I knew something needed to be done. After several calls to the doctor over the course of a week with no response, I decided to switch doctors. This was tricky because I didn't know if I would be able
to find another doctor that was willing to take our case in the middle of treatment. Thankfully, we did find another Urologist who was willing to follow Caleb.  I do not normally call and file complaints, but because the first doctor had been so negligent, this time I did. I expected to receive a call back from the doctor's supervisor but was not prepared to hear from the doctor himself. He called and proceeded to yell at me and let me know how upset he was that I had reported him. I was shaking when I got off the phone, angry at the injustice of his attack and at the reality that it had taken a filed complaint to finally receive a personal response from him. But I also knew, at that moment, that I had made the right decision for Caleb, and I was glad I had taken action for him.

We have also frequently had to advocate for Caleb in regard to his nurses. Ninety-
five percent of the nurses that we have had have been amazing - truly God sends. But
just like any other profession, there are those that shouldn't be doing what they are
doing. The easiest nurses to let go were the ones employed through an agency. For
those, I just had to call the agency and tell them not to send the nurse back. Of course,
this often meant that we were without a nurse for a week or more, but sometimes it
needed to be done. The most difficult time to let a nurse go was when she had fallen
asleep on the job. After waking the nurse and often times debating with her that,"Yes,
you truly were sleeping,” we would have to ask her to leave. I would like to say that
we immediately released these nurses, but sometimes we gave them several more
chances. I look back and cringe at the thought that we were putting Caleb's life at risk
because we were unwilling or unable to get up the courage to let the nurse go. Firing
a nurse was so hard because she had usually been with us for several months and we
had developed a relationship with her. Eventually we realized that we had to look out
for Caleb's best interest first, but it was never easy to cut these ties.

All parents must advocate for their children. We all have to deal with teachers,doctors, coaches, etc. Even though advocating for my children often makes me nervous, I have improved at it over the years. Here are a few insights that have made the advocating more effective.
  •  I am the only advocate my child has. He cannot advocate for himself. This knowledge is often enough to give me the courage I need to proceed when I would rather stay quiet.
  • I approach the individual(s) that I need to confront with dignity and respect. Often I end up discovering that we are all trying to do what is best for my child but are going about it in different ways. At times we can come to an agreement, but at other times I will need to proceed with a different plan.
  • I go directly to the person I am having an issue with. Even though it is tempting to share the story with everyone else, until I approach the individual who can bring about change, I am not really advocating for my child, I am only venting.
  • I often have to make decisions based on my gut instinct.  I know my child better than anyone else and therefore must proceed when I believe a change needs to occur.   
 Advocating for our children is rarely easy but always necessary.  As we improve in our ability to advocate, we will be better able to fight for our children when they are not able to fight for themselves..

Sunday, March 9, 2014

The Joy of Friendship

To My Dear Friends Amy, Karen R, Marlena, and Karen M,

Our friendship began when our children were small. Four of us met when our children's autism class was meeting at the YMCA. You came to observe your child, and I was there because Caleb wasn't allowed to swim without me being in the pool with him. After the kids got back on their school bus, we would all converge at a local restaurant to share our stories, laugh and shed a few tears together.

Over the years our fifth member was added and our group has been that much richer for the addition. We didn't set out to create a support group; we were just moms of special children, gathering for encouragement and lunch, but what has transpired over the past ten years never ceases to amaze me. 

We have grown from inexperienced mothers trying to figure out what our children's diagnosis meant and how to make it through those challenging childhood behaviors to experienced mothers who are now trying to navigate the challenging adolescent years.

What has kept our friendship strong over so many years and so many trials? Obviously our children brought us together initially, but I have met several other people who have children with the same diagnosis who have not bonded in this way. 

I believe what has made our group so strong is an element that is greatly missing in much of motherhood. It is the element of true acceptance. We each have different personalities and have chosen to walk different paths with our children. We have differing views on everything from religion to healthcare to the best interventions. And yet, the one thing we all have in common is a deep and passionate love for our children. This love has led some of us to take our children to doctors and to utilize medication. It has led others of us to avoid the medical profession at all costs and to find treatment through alternative approaches. And yet others of us have chosen to walk a path of neither medical nor alternative medicine.   But what we have provided to each other is a true respect for the choices that we each make. We have been able to rise above the need to defend our approach and have been able to honor each other with an openness to hear and appreciate the value in each choice. 

I realize what a rare gift this friendship is. Parenthood is such an uncertain territory and because of this, most parents feel some insecurity about their parenting. I believe this causes so many to defend their choices as though theirs is the only correct way. The sad thing to this approach, though, is that it alienates parents from anyone except those who are like minded. And in this isolation, we miss out on being free to accept that we don't have all the answers and we don't know everything. It keeps us in a bondage of sorts, needing to defend our approaches. And in so doing, we miss out on the depth of rich friendships that can be formed from connecting with others who look at life through a different lens. 

My challenge to all parents, but especially to those of children with special needs, please let down your guard and reach out to other parents. Choose to base your friendship on a mutual love for your children, not on the approach that you have chosen to use in parenting your child. For one thing that I have observed over the past seventeen years is that although my friends and I have all chosen different paths, our children all seem to be arriving at the same destination. So let's accept that there are many good ways to raise a child who has special needs; the one variable that will carry us all through is the deep love that we have for our child. And if we are able to respect other parents along the path, perhaps this won't be such a lonely road. 

Monday, March 3, 2014

Special Needs and the Community

As a society, where have we come regarding individuals with special needs and where
do we still need to improve?

What have we experienced with Caleb? We have lived in the same city since the time
Caleb was 3 years old. We chose this city, not only because we liked it, but also for
the school district, which we felt could best meet Caleb's special needs. We have not
been disappointed. Up until this point, Caleb has received a great education and has
been able to be involved in our community.

Over the years we have become very familiar with the local establishments within our city. Caleb has accompanied us to restaurants, stores, and the library hundreds of times. The workers at these establishments have seen Caleb grow from a little boy with autism who was attached to a ventilator to a tall and lanky teenager. They have observed us on successful trips and trips that have entailed a few meltdowns. In this regard, they have seen the same successes and failures with all of our children.

As Caleb is now nearing adulthood, our thoughts are turning to post secondary
work. Granted, we are still a few years away from the infamous age of 22, but I have
decided that if Caleb is to have a job working in the community when he leaves high-
school, we should begin now, by starting with volunteer opportunities. With this in
mind, I have begun to be more observant of the workers at the local establishments
that we frequently visit. I have been saddened to see that I am finding no adults with
special needs working at these businesses. How can this be? Our city is filled with
individuals who have disabilities. Our city boasts a wonderful school that meets these
children's needs and a great center for adults with developmental disabilities. Where
has the breakdown occurred?

When I was a child, all kids with disabilities were placed in a classroom for "retarded
kids". Because our schools today have progressed so far, I find that Caleb has been
able to be educated with typically developing children. In turn, we have a whole
generation of children who are being raised comfortable with others who are different
than themselves. When we are at the park or out in society, kids from Caleb's high-
school will say hello to him. They don't need to; they could choose to walk on by and
I wouldn't be the wiser because I don't know who attends school with Caleb. But they
see value in Caleb and therefore engage with him. I believe when these youngsters
are grown and become business owners, they will find a place to include adults with
disabilities. But what about my generation of adults?

I believe that my generation is learning to accept people with differences, but I am not
quite sure if we are able to embrace them and include them in our society. We have
updated our buildings to make them handicap accessible because we are required to
by law, and we are friendly to individuals who enter our establishments who have a
disability, but are we willing to go out of our way to make a way for these individuals
to participate in our cities?

As I begin to search for volunteer opportunities for Caleb, I am finding my options
are limited or nonexistent. Caleb is capable of more than shredding paper or rolling
silverware. We are beginning to find that kids with autism are capable of so much
more than we once thought. But for them to be able to reach their full potential, we
are going to need to come together as a community and create opportunities for these
special individuals.

As families, I believe that we need to have our children out in the community from
the time they are little. Is it a challenge to take a child with autism into the store or
restaurant? Most certainly. But it is our privilege as parents to share our children
with society and to help society become comfortable with our children.

As businesses, we need to open our doors to individuals with disabilities. Not only as
patrons but also as employees. Will this be a challenge? Of course. Will this stretch us
as business owners? Most certainly. But will we be better in the long run? I believe

As a society, I believe that our individuals with special needs have a lesson to teach
us all. They stretch us beyond ourselves and our own selfish motives. They have the
ability to make our society a place of love and acceptance where all individuals are
valued, not for what they can add to our pocketbooks but for their intrinsic worth as
human beings. I envision a society where all individuals are part of the daily workings
of the city. Will this occur in time for Caleb to have a place in it, or will we have to
wait until our children grow up and become the owners of the local establishments?
I hope that our local city will work with the school and the Center for Individuals
with Disabilities and will begin to create opportunities for this unique population of
individuals to become part of our community. For in doing so, we will certainly be a
model city that will be an example and challenge to the rest of the world.