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..

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. 

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
so.

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.

Special Needs and the Church

Attending church with an individual with special needs is challenging. As I think back to all of the churches I have gone to, the number of attendees with disabilities is sparse. So my guess is that many families living with children with special needs have chosen to stay home rather than try to "fit in" within the church.  As Caleb has become a teenager, we have found this "fitting in" harder to accomplish.

When Caleb was younger, the churches we attended were able to provide a  one-on-one for him so that he could go to children's church.  This was a huge help because it not only allowed Caleb to attend church with kids his own age, but it also allowed Bob and me a much needed break while we attended the adult service.  But as Caleb has gotten older, there are no longer kid’s classes for him to attend.  This has left us with one of two choices - leave Caleb at home with a nurse or have him in service with us.  

We have considered arranging to have a nurse stay at home with Caleb during difficult months where Bob or I have spent the entire service trying to keep Caleb quiet and calm. What has helped to carry us through, during these challenging months, has been the churches reaction to Caleb.  When Caleb yells out during worship, they interpret the yelling as his way of singing, rather than as a disturbance.  When Caleb says "all done" while pastor is preaching, no offense is taken.  And time and again, individuals purposely come up to greet Caleb and make him feel a part of the church. Recently our pastor asked if Caleb would like to be part of the youth group.  Pastor shared what a blessing Caleb is to others and how the other children would benefit from having Caleb as part of the group.  We have not yet decided if Caleb will join or just participate in outings, but the gesture on the part of the Pastor spoke love and kindness.  

Although it has been challenging, I believe that one of the positive things we have done for Caleb is making the choice to have him attend church with us.  I feel church is a place for families and even with the difficulties, I believe our whole family should attend.  I also believe that although Caleb does not appear to be paying attention, there is much that he is learning from sitting through the service. And my heart swells with joy when Bob accompanies Caleb to the communion table and he is able to partake in the elements.  This simple act reveals to me time and again, that Christ came for all, regardless of our challenges.    

At one time I believed that we needed more churches that catered to individuals with special needs. I now wonder, after years of attending church with Caleb, if rather than having a church put together programs and classes for kids with special needs, perhaps in the long run, what we all need is churches that are willing to embrace the families who enter their doors - churches that will tolerate some strange noises and unusual behaviors in order to show Christ's love to all individuals, churches that will reach out to the families of individuals with disabilities and help them to feel proud of their child rather than embarrassed.  Perhaps by becoming a church body that reaches out in this way, we will truly be the hands and feet of Christ.  

A note of encouragement to families living with a child with special needs - please continue to look until you find a church that welcomes your entire family with open arms. Be patient and honest as the church body adjusts to your presence and don't take offense if you get a few strange looks.  Our kids need to be part of the church and the church needs our children.  

Thank you Prince of Peace for being that church body.  You have made us not only feel welcome but have embraced all of us with open arms.  

How Caleb's Incontinence Taught Me Servanthood

Whoever wants to become great among you must be your servant, and whoever wants to be first must be slave of all.  For even the Son of Man did not come to be served, but to serve, and to give his life as a ransom for many.  Mark 10:43-45

Many, many years ago, when Caleb was still very young, I witnessed an amazing exchange between a caregiver and their adult child.  I was in the restroom at a shopping plaza, when I overheard a conversation in the stall next to me.   The parent was cleaning up the adult child who had soiled himself.  The parent spoke with such grace and kindness that I was struck with the thought that I was truly witnessing the love of God being played out right before my eyes.  I felt it was a beautiful picture of the servant-hood that Christ has called us to exemplify.  I was touched and moved by the experience but never imagined that I would one day be asked to become that servant… 

From the time Caleb was an infant, he has experienced complications with his bowel movements.  By the time he was one, he had already undergone surgery to correct portions of his colon that weren't working properly. Therefore, we weren't surprised when potty training needed to be delayed by a couple of years. 

But as Caleb neared school age, we really buckled down to get him out of his pull-ups before school began.  Although we had some success, he continued to have many accidents a day.  We ended up sending him to school in a pull-up, but continued to work towards continence at home.  As the years progressed, Caleb became completely continent of urine but would still have occasional accidents of stool.  By the time he was in middle school, though, we felt confident enough in his ability to make it through the day without accidents and started sending him to school in "big boy" underpants.   The teachers were tolerant of Caleb's accidents because the nurse that accompanied him to school would always clean him up.  But as middle school ended and we entered into high school, the new school was much less tolerant of the contamination that would occur if Caleb had an accident.  The accidents became a big deal to school safety.  Any time that Caleb was incontinent, the janitor would need to be called and the chair that he was sitting on and the floor at his feet would need to be cleaned and sterilized.  The cleaning solution that was used was so strong that the whole class would need to evacuate the room.  Therefore, we soon received a call from the school stating that until Caleb was wearing a pull up, he would not be allowed to return to school.   I was angry.  I didn't want my high school son wearing a pull up to school, and I also had the fear that if we put Caleb in a pull up, he would regress and just start using the pull up rather than the bathroom.  Initially, I planned to fight this injustice, but as I realized the way his accidents were affecting the other kids in his class, I relented.  I have sent him to school in a pull up ever since.  Not only was the school having more difficulties with Caleb's accidents, but that summer we also experienced problems of our own.   

The summer between Caleb's freshman and sophomore year was an especially difficult time for us.  Caleb was frequently getting into the cupboards and the refrigerator and eating foods that he shouldn't have been eating.  This led to very frequent bowel movements. Because we were at home, Caleb would go down to the bathroom and shower in order to get cleaned up, oftentimes showering 6-8 times a day.  Because Caleb was taking so many showers, he started to fool around in the shower and began putting things down the drain. One day, I went in the bathroom to find the floor completely flooded.  Caleb had put an entire roll of toilet paper into the drain.  There was no way to remove the toilet paper, and so showers were off limit until further notice.  This was supposed to be a punishment for Caleb, but it became more of one for Bob and me.  I now needed to go down and clean Caleb up after every accident.  It is one thing to clean up a 2 year old, and a little more difficult a 5 year old, but by the time Caleb was 15, I was not happy having to do it.  After one especially trying day, Caleb alarmed that night and Bob went down only to find Caleb needing to be cleaned up again.  Because the shower was out of order and Caleb was such a mess, Bob had Caleb come upstairs to our bathroom.  The only problem was that anything Caleb touched was now covered in poop. The poop was also dripping down Caleb's leg and therefore was also all over the carpet.  By the time we got Caleb cleaned, the bedding changed and the carpet scrubbed, I knew something had to change. 

The next day I called the doctors and requested an appointment. We were seen originally by a GI but then referred to a surgeon.  Because all testing came back normal, no one could tell us why Caleb was still having so many problems.  The doctor shared several options with us, but we decided to go with a procedure that would insert a port into Caleb's intestines. We would use the port to flush Caleb every evening.  The goal was to have Caleb "cleaned out" until the next flush the following evening.  We were so hopeful that this would fix everything.  But, to our dismay, the procedure caused more complications and did not eliminate the accidents.  Therefore, 6 months later we had the port removed and were back to where we had started.  

This past summer, when Caleb was once again home from school and I was in charge of cleaning him, it struck me how often I was lecturing him about his accidents.  The lectures weren't a new thing; I had been giving them for many years.  They would often sound like this. "Caleb, you are (5, 7, 10, 13, 17 years old). You need to start using the toilet.  If you want to come with us to - the movies, the mall, the amusement park, you need to stop pooping in your pants."  But at that moment, when the realization hit that I was doing it again, I remembered back to the example I had witnessed in the bathroom many years before.  I realized that nowhere in my lecturing was I acting with a servant’s heart.  The lectures were about me.  I didn't want to clean up the mess, I didn't want to leave whatever activity we were engaged in and help Caleb, I didn't want to accept this part of who Caleb is.   At that moment I realized (or perhaps accepted) that my son is a 17 year old young man who is incontinent.  He does not just occasionally have accidents, he is truly incontinent. As this realization settled on me, a new freedom began to seep in.  I no longer needed to fix this problem or my child. I no longer needed to be surprised or disappointed each time Caleb had another accident. And I could stop giving lectures because they weren't changing the situation. A new way of living was possible.

Perhaps it has taken me 17 years to allow my heart to be broken and changed so that I am now able to willingly become the servant that Christ has called me to be.  And who knows, the next time I am in the bathroom helping Caleb get cleaned up, perhaps in the stall next to me will be a mom who will be touched by Christ living through me as I show the love and grace to my child that He has worked out in me.  

Bedtime Battles

Sharing this post is very difficult because I want to be respectful to Caleb and yet be honest with what life looked like in our home for several years.  

The night time battles began around the time Caleb was five years old.  Up until that time we had had some difficulties with getting him to sleep, but nothing like what was to come. 

We began to experience nights where Caleb would not fall asleep, all night long.  This wouldn't just last one night, but two or three nights in a row.   I would always make Caleb get up in the morning and go to school, even if he hadn't slept, believing that I needed to keep him in routine.  The last thing I wanted was for him to sleep all day and then not need to sleep at night.  Eventually Caleb's body would become completely exhausted, and he would  sleep well for a couple of nights, but then the whole thing would begin again.  Many challenges occurred because of this lack of sleeping.

Because Caleb was rolling around in his bed, he would continually need to be reconnected to his ventilator. In order to try to fix the problem, Bob or I would lie next to him and try to help calm him down. Caleb loved deep pressure, and so we would try to "snuggle" with him with the hopes of helping his body to rest.  But even though we were snuggling, his body continued in constant motion.  So we would hold him a little tighter.  He didn't appreciate this, but we would tell him,"Once you lay still, we will let you go."  This plan never worked!  He would attempt to lay still, but his hand would keep moving or his foot would bounce up and down.  

We always started these evenings out with such good intentions.  I would think, tonight will be better.  I would curl up next to Caleb and talk to him softly, but after an hour or more, I would start to get impatient and so would begin the snuggling. This would last for a half hour or so, and then I would begin the tighter snuggling (or restraining).  After another half hour of Caleb struggling with me and me getting more and more frustrated, I would get up in disgust and say, "Forget it, just stay awake all night if that is what you want!”  I would leave the room angry and impatient and then Bob would give it a try.  Once we were both at a point of complete frustration or despair, we would head off to bed, lying there in defeat.  

If we could have just remained in our room, we might have been able to eventually fall asleep and begin again the next day.  The problem was, that on many nights when Caleb alarmed we would go down and find him, the bed and the walls all covered in poop.  The feelings of anger and despair and complete exhaustion at these moments were overwhelming.  At times we walked right back out of the room and left him sitting in the mess until we were able to calm down and re-enter with at least a bit of control.  At other times, Bob or I would clean up the mess alone because the other one could not regain control.   

I wish I could say that this happened for just a week or two, but this was our life for many years.  I begged Caleb's doctors for something to help him sleep.  I tried to express our desperate need, but Caleb was a child, and I was told over and over that children are not allowed to be given sleeping medicine.  Caleb's neurologist eventually was willing to give us a psychotropic drug that was supposed to have the side effect of sleepiness.  I couldn't believe that I was not allowed to give Caleb sleeping pills but I could give him one of these other powerful medicines.  It sickened my heart to administer the psychotropic drug to Caleb, but we were desperate.  Sadly, even with the medicine, Caleb would still stay awake until two or three every morning.  This was certainly better than all night but was not what I had been hoping for.  And yet, we felt we had no other options.  

Miraculously, one night while I was at a Bible study, a friend shared with me about an over the counter supplement that was supposed to help people fall asleep.   I left the study that night and went straight to the drugstore.  We began giving Caleb the supplement that night, even though we knew we should wait and talk to the doctor. Amazingly, after taking the supplement, Caleb fell asleep within an hour and slept all night. I did call the doctor the next morning and received permission to use the supplement.  We continue to use it to this day.  Any time that Caleb is not asleep within an hour, Bob or I will ask the other,"Did you forget to give Caleb his medicine?"  And almost always, the answer is, “Yes.”  

I truly believe that Caleb's sleeping issues are due to the autism.  I wish that I could say that this is no longer a problem for families with kids on the spectrum, but almost daily I read posts on Facebook about families living this exact scenario.  My plea to everyone is, if a family is living through this, provide help.  If you are a professional, take their cries of despair seriously.  An exhausted parent, a child who won't sleep for months on end, and poop smeared walls can quickly become a volatile situation.  And for families living through this, do not give up.  Continue to seek help, and when you feel your anger rising, please walk away.  

My heart breaks for every parent and child who is still living through this.  My prayers go out to you that you will find help and have the strength and patience to make it through this phase of your child's development.

Receiving Diagnosis Number Two

My Dearest Caleb,

Although we had participated in therapy from the time you were born, we did not realize that something wasn't quite right until you were three.  Not only were you not reaching your milestones, you were falling further and further behind.  Dad and I thought it was due to you being connected to the ventilator twenty four hours a day, but all of your specialists assured us that other children with your breathing disorder continued to make progress in all other areas of their development.  Despite their warnings, we continued to hold fast to our view.

Over time, though, we began to see behaviors that indicated there might be another problem.  Whenever you were excited, you would flap your hands in quick succession; you were still nonverbal, and you were becoming obsessed with certain activities.  Whenever we would pass an elevator, you would point, indicating you wanted to ride.  If time would not allow us to take you on the elevator, a full blown tantrum would ensue.  At dinner time, if we had six muffins but only ate five, a tantrum would ensue.  And if we passed a gas station and failed to stop, another tantrum would ensue.  

As we began to question the therapists and were referred to a psychologist, the idea of autism arose.  When you were first born and we discovered that you had the breathing disorder, dad's one comment was, "I am just glad it is not autism.”  All we had heard about autistic children was that they could not connect on an emotional level to their caregivers.  Nothing sounded more devastating than not being able to shower you with love and have it reciprocated.  Dad had grown up in a family with lots of affection and he desired the same for our family.  Therefore, when all of the reports began coming back, and we were told over and over that you had autism, we were devastated.  

"How could you have autism?" we questioned, when you already were diagnosed with a breathing disorder.  Your doctors had warned us that the presence of one diagnosis did not lessen the possibility of another, but we hadn’t wanted to believe them.  What would this mean for our family and for you?  Wasn't it enough that you already had to have a nurse with you whenever we weren't with you? Or that you already had to work so hard to compensate for the breathing disorder? As we began grieving for you, we also began grieving for ourselves and for what this would mean for our family.  

Autism is so different than your medical issue.  With your breathing disorder, everything is very concrete.  If your oxygen levels are low, we increase your settings, if the alarm sounds, we reconnect you to the ventilator.  Although there are high levels of stress related to these things, we feel confident in our ability to care for you and meet your needs.  Autism is a whole other story.  There are no instruction manuals that tell us why you get so upset if one muffin is left.  Nor is there a clear understanding of what is causing your lack of verbal communication.  There are so many unknowns.  With your breathing disorder we know that our goal is to keep you well ventilated.  But what is our goal with autism?  And how can we reach it if we can’t even define it? 

As the years have progressed and you have grown, we have all gradually accepted this diagnosis as part of who you are.  We have not yet been able to embrace it, as some families do, because a part of us still grieves for all that you cannot do.  At seventeen years old, there is still very little verbal communication, your safety awareness remains poor, and your ability to control your emotions remains difficult.  With all that being said, you have an amazing passion for life.  You are not restricted by social norms as we are.   You express excitement with true abandonment.  You love to snuggle with us and are open to receiving hugs.  And although so much is locked up in your brain, I believe you are filled with much to share.  

Over the years we have had many ups and downs.  The grieving over this second diagnosis has lessened, resurfacing only occasionally now.  But despite it all, we love you Caleb and hope that we have been able to express, in a way that you understand, what a true blessing you are to all of us.

A Tribute to the Power of One

Dear Mary (Our Early Intervention Specialist),

You had been teaching for many, many years when Caleb and I arrived at the door
of your classroom. To you, this was the beginning of another day like many that
had passed before. To me, it was an embarking on a new and unknown path. Our
home therapy had been discontinued, and this morning we were to begin out-patient
early intervention services. We had received the letter in the mail telling us the day
to arrive, the classroom number and your name. I had envisioned what we would
experience but was not prepared for what I was about to learn.

The moment the door opened, your smile and personality welcomed us as a
grandmother would welcome her family. You instantly put me at ease as I rolled
Caleb and his ventilator through the door. You took the lead to show us around the
room and allowed us to choose an activity that Caleb would enjoy. Your approach
that entire first day was about making Caleb feel comfortable and about finding out
what my needs/concerns were as his mother.

Over the next two years your classroom became a place of support for me. On days
when I was so sorrowful about our situation, you dried my tears and provided a hug.
On days when I was frustrated with lack of services, you helped me to brainstorm
about other ways we could get Caleb's needs met. And on days when I was so proud
of an accomplishment, you celebrated with me. You were so present that on each
day of class you were able to provide not only therapy, but also the support and
encouragement I needed in order to make it through another week.

Because Caleb was my first, I not only needed help with teaching him his therapy
exercises, I also needed someone to guide me in my parenting. You gave gentle and
wise advice on everything from potty training, to eating struggles, to discipline. You
instilled confidence in me by your simple methods of explaining things and by your
trust in my abilities. You truly made me feel as though I could succeed in meeting Caleb's needs.

In your classroom there were several other students also receiving services. Over the
months it became obvious that some parents were better at following through on home
exercises and parenting tips than other families, but never did you show annoyance
nor speak ill of any of the families you were serving. Even on weeks when we were
not able to complete the home exercises and there was no progress, you were happy
to see us and encouraged us to pick up where we had left off and continue working
toward our goals. You encouraged us with each small step along the way, pointing
out that, yes, Caleb was getting stronger and moving in the direction that we wanted.
You felt comfortable with the rate of his growth and in turn, you gave me permission
to be okay with his slow, slow progress.

 You carried with you a humble, yet informed spirit. As our time in your class came to a close, you had us connected with all of the services we would need to continue along the journey of Caleb's development.

Caleb has had many teachers over the years that have lived out all of these qualities,
but perhaps because I was so young or because Caleb was my first or because I was
present in the classroom for each session, your impact on me was the most profound.

_______________________________

Mary passed away a few years after we left her class. At her funeral were hundreds
of parents whose lives she had touched throughout the years. I don't know how many
of them were able to share with Mary the impact she had on their lives. So, to all of
the Marys out there, thank you for the job you do. You may never be told, but you are
touching lives for eternity. Not only have I been a better parent to Caleb because of
what I learned in Mary's class, but I have also been a better parent to all of my other
children. And what my children learn from me, they will pass on to their children and
their children’s children. And so please, never underestimate the power that you have
to make a difference in this world. You are not just teaching a class, you are making
the world a better place for generations to come through your impact on one family at
a time.

A Letter of Encouragement

My Dearest Friend,

As you sit at home, alone, or surrounded by nurses and therapists, I realize how lonely you are.  No matter how many people step in to help, the ultimate care of your little one remains yours and yours alone.  The professionals can and will eventually leave and move on with their lives.  There is no moving on for you.  You have now begun this journey on a very lonely path.

I understand how frustrated you become at times, not only with the situation but also with your child.  You are not able to place your child in her crib and walk away when she has been crying for hours on end, because your little one needs constant supervision in order to keep her alive.  You are also not able to call your neighbor and ask that she stop in to give you a break when you feel you have had all you can take, as she is untrained to meet the medical needs of your child. 

I know the worry that you carry regarding your child's health and emotional issues. When the rest of the family is asleep and your little one has finally begun to rest, how you lie awake worrying about insurance coverage and bills and surgeries and not only what next year will bring, but how you will make it through tomorrow.

I have experienced the moments of crying out to God without having the words to express my pain and sorrow.  

I recognize the guilt that you have for feeling all of the above emotions.  This is not how you envisioned motherhood.  This was nowhere in the plan you laid out for your life. 

I also acknowledge your deep love and commitment for your child.  I know you are willing to give up personal comfort, wealth, your own career and your personal plans, in order to provide your child with all she needs.

I notice that you scour the internet looking for answers and a cure.  I have observed you on Facebook and blogs in hopes of finding some relief for your inner turmoil.  I recognize that you reach out to friends and share your hurt, frustration and loneliness. And I also realize that no matter what you do, at the end of the day you come back to the starting point of needing to walk a path that you never imagined or dreamed of walking.

The first two years of Caleb's life were filled with such loneliness, frustration and sorrow for me.  And I also reached out to others with the hope of somehow being released from the journey before me.

If I were sitting next to you, I would put my arms around you and allow you a good cry.  I would come over with coffee and just sit and visit and give you a chance to experience what a "morning out for coffee" feels like.  But because many miles come between us, let me offer you some encouragement.

What you are doing truly matters.  The endless sleepless nights, the speaking up when your child can't, the loneliness and sorrow.  It is all working in you to create a beautiful masterpiece.  While I was going through the early years with Caleb, I thought I was sacrificing myself and giving up my dreams.  In a sense I was, but what I received in return has been a change within that I never could have imagined.  I have become stronger and wiser. I am patient and caring.  I find value in so many things that I never found valuable before.  I see beauty where before I only saw heartache and sorrow.  What is occurring in you is the burning away of all self-centeredness and it is being replaced with a beautiful thing called love.  

Please reach out to others who can help (a counselor, a pastor or a friend who really understands).  There is no value in traveling this path alone.  And rather than fight what you are feeling, allow it to occur and over the years, sit back and watch the beautiful life that happens not only in your child, but especially within you.

Traveling With a Special Needs Child

Caleb was discharged from the hospital in January and by the time Easter rolled
around, three months later, we felt the need to travel. All of our family is out of state,
and we had been used to traveling several times a year in order to spend time with
loved ones. We saw no need for this to change, and so as April rolled around, we
packed up Caleb, his ventilator and all of his equipment and headed out on the four
hour trip to spend the weekend with family.

The drive to Michigan was uneventful, and we felt pretty good about our
independence and our ability to continue on with life as we had previously done.
Once we arrived, the unpacking took a little longer than normal, and we had a lot
more luggage, but nothing would deter us. The problems didn't arrive until nighttime
set in. As the house became quiet and we all turned into bed, Caleb's alarms began.
We were used to having a nurse at home, but so far away we were on our own. As
soon as we would fall asleep, Caleb would disconnect from the vent. We took turns
getting up to re-hook him, but as the night wore on and the alarms continued, our
patience began to wane. It seemed that we could not sleep for more than fifteen
minutes in between each alarm. By 4 o'clock in the morning I was ready to reload
everything and head back home.

As the sun began to rise, so did Caleb and the rest of the household. Our interrupted
sleep was over, and we were to begin a new day. We took turns trying to nap, but
this seemed to defeat the purpose of being together with family. As day two turned to night, we settled in for a repeat of the first night. Morning found us packing up and heading home, short on sleep and patience.

The trip back to Ohio was filled with an air of defeat. We had made the trip, but had
it been worth the trouble? We didn't bother discussing much as we knew that in our
exhausted state, nothing productive would transpire.

As the years passed, Caleb's night time venting became much easier. He slept more
soundly and the alarms became few and far between. This made for easier sleeping,
but our daytime with him became more difficult.

Caleb was becoming ambulatory and beginning to explore everything. And not in the
way a typical child would, but in a destructive way. He would wander from room to room,
and anything he would pick up seemed to end up broken. He loved to try to take
things apart, and this led to needing constant supervision. I do not exaggerate when I
state that at all times either Bob or I would need to be with Caleb. In this manner, one
of us would be able to visit, but the other wouldn't.

Again, we began to wonder at the value of the effort needed to take these trips. And
yet, family was such an important part of our lives. We needed to find a way to make
this work. Some things could not be changed, but others could be altered to make the
trips more enjoyable and slightly less exhausting.

In the hopes of helping other families navigate their travels with fewer struggles, I
have compiled the following lists:

Things I would have done differently

• I would take the first year and do no traveling. I would welcome family that 
would like to come our way, where our support system was in place. 
• I would educate and include my family more in the care of Caleb. I imagine 
some of them would have been willing to take a turn at following Caleb around 
while we were visiting. 
• I would sleep all that I needed and view the time with family as a break for 
myself.
• I would be open and honest with family regarding the difficulties involved in 
traveling. 

 Valuable tips when packing for a trip  

• Have a master list of all medical supplies that will be needed. After Bob would
pack, I would use the list to double check that everything was loaded. There is 
no worse feeling than arriving at your destination only to realize that you have
forgotten the cord to a necessary piece of equipment. Four hours is a long drive 
when you have to turn around and go right back home.
• Bring plenty of your own toys and books to entertain your child. One time we 
brought a whole bin of supplies to keep Caleb entertained and in the same room
as the rest of the family. 
• Always, always have the phone numbers of your doctors and medical supply 
company. There have been a couple of times when our equipment company 
has been able to bail us out of a jam. 

Pointers for those who open their home to families with special needs children

• Remove any items that are breakable.
• Close and, if possible, lock doors that you do not want the child entering.
• Have available some of the child's favorite activities.
• Don't plan on sitting in one room and visiting. Be willing to go to a park, take 
a walk, include the child in a cooking activity, or follow the parent around 
room to room. 
• If a group is gathered in one room visiting, and you notice that the parent and
child are missing, seek them out. It is a very lonely feeling to be with a group 
of people and yet be sitting with your child in another room. 
• Engage with the child.  Even if the child cannot talk, still include them in
conversations and activities. Make comments during the conversation rather 
than asking questions (ie: This puzzle is tricky; you sure are working hard at 
it). 
• Be nonjudgmental of the parent and the child. Traveling puts children out of 
their comfort zone. Meltdowns and tantrums will be more frequent which in 
turn increases a parent’s stress. You may see the worst side of both the parent
and the child.
• Offer encouragement. A word of compliment regarding either the child or the 
parenting goes a long way. Parents of special needs children very rarely get a
pat on the back and they often feel as if they are failing. 

Traveling with a special needs child remains a challenge, but it has gotten much easier over the years. We no longer come home exhausted from our trips, and our family has learned a lot about Caleb. My hope for you is that whether you are the parent of a special needs child or the extended family, you will cherish the special life that has been added into your family.