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.

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.

The Journey Begins

For years now people have been telling me that I need to share my story. I didn't ask to have a story, but life happens, and along with it came my story. So, 17 years into this journey of motherhood, I finally have decided that I will begin to write about the adventure that I call life. My preference is to sit with a friend, over lunch, and share our stories that way, but many people that are experiencing the life that I have lived are not able to meet for lunch. They are too busy caring for their child in a hospital, or advocating for their child in order to get the services they need. Or they are just too worn out and exhausted by the demands that life has given them. So, I will begin my blogging career with an invitation to all of those mothers out there, who need a shoulder to cry on, an older woman to seek advise from, or someone to listen to their worries and fears. I will share my story, along with the joys and sorrows I have faced. I will be honest, though at times it will hurt, and I will paint a true picture of life in our home. I do not do this for sympathy or accolades, but to help others know that they are not alone. There are many of us on this journey, and if I am able to bring encouragement and help along the way, then I am greatful for the time I have spent on this road.