Sunday, February 23, 2014

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.  

Sunday, February 16, 2014

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.  

Sunday, February 9, 2014

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.

Sunday, February 2, 2014

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.