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.

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.