Sunday, August 28, 2016

A Difficult Teachable Moment for a Parent of a Disabled Son

In 1789, Benjamin Franklin wrote that, “Our new Constitution is now established, and has an appearance that promises permanency; but in this world nothing can be said to be certain, except death and taxes.”  Today it is often condensed to just say that there is nothing certain in life except death and taxes.  If this is true, why do we not spend way more time and energy on teaching those things that are the two guarantees in life?  I mean…if we know these things are coming, then why not be prepared, especially when it comes to death?  We are all going to experience it…there is no way around it. As humans, we are all going to die.

When it comes to death, being prepared can be a bit tricky if you ask me.  There is no real way to “practice” it for ourselves.  When we experience the death of someone or something near and dear to us, we are often so emotional that we don’t find time to think about the stages or what we can learn from it.  Having two adult sons with a developmental disability called fragile X syndrome has brought all of this to the surface for my husband and me.  

Fragile X syndrome has caused a whole lot of difficult-to-understand-scientific-garble-talk crap (but if you really want to know more, go to to happen in our sons’ brains.  Suffice it to say that they operate at about the cognitive age of 5 year olds, with a vocabulary of a 2-year old.  So, how do you teach someone in a big person’s body about something so difficult, and at the educational age of that?  Very. Carefully.

Even at the ages of 25 and 27, they have not really experienced a great loss of someone very close to them.  Nor have they been allowed to really understand what losing someone means.  When they were 2 and 4 years old, their Grandmother passed away.  It was very traumatic for my husband, Chris, and I, but the boys were too young to understand.  Even at that age, we memorized saying, “Grandma went to Heaven”, just to provide some point of reference if we were asked (which we weren’t because they couldn’t speak at this age).  I think the whole thing was more of a coping mechanism for us than them.  

A few years later, we lost our Boxer, “Bud”, and, again, it was somewhat transparent to them since we had already acquired a new dog named, “Elmo”.  

Elmo was a one-of-a-kind dog that we had trained to eventually become our youngest son, Joe’s, companion dog.  This is the dog that they both grew up with from a very young age.  Elmo was the one that they formed a tight bond with.  When he died in April of 2012, this was the first real devastating loss that either of the boys had experienced up to that time.  There was a bit of lead-up to his passing since he was sick, which gave Chris and I time to think about how we should help the boys to understand this loss once it happened.  

When Elmo was sick, we made sure we used words like, “sick” on a daily basis, as well as, “doctor” and “sad”.  We weren’t sure what we were doing, really, but we had to try something.  We desperately wanted the boys to be able to experience loss even though it would be really hard.  Hard because seeing your children sad is a difficult thing for a parent.  Hard because, we ourselves were sad, too.  Hard because sometimes the boys are feeling something that they themselves do not understand.  But, we knew the only way they could grow to understand it would be to experience it.  There is no way we could teach emotions through a book or lesson.  This is the part of parenting that is get-down-in-the-trenches hard.

We had an idea.  We thought we could use something familiar to help them understand the very obscure concept of loss, as well as the feelings we were all going through…..Mister Rogers Neighborhood.  Our oldest son, Jake, has always adored Mister Rogers, and, in fact, was obsessed (still is) with all things “Fred”.  It just so happens that Mister Rogers has a video all about death in an episode called, “The Death of a Goldfish”.  He also has a book entitled, When a Pet Dies. We had our resources, now we just needed to muster the courage and swallow back our own tears in order to begin.  

The night that Elmo died, we clung to our normal routine and when it was time for “couch”, we decided to make our move.  I spoke in a very calm voice as I swallowed back my own tears, but said that Elmo had died that day and that he would not be with us anymore in the house.  He would go to a new place called Heaven and he would run free and not be sick anymore (how do you really explain Heaven????).  There was no reaction from the boys.  Then I said that we would watch this Mister Rogers video, and there was elation from Jake because we didn’t normally watch a video at this time in our routine.  We all watched the episode together and listened carefully as Fred explained that it was ok to feel sad.  After the video ended, Chris said that he felt sad and that Mommy felt sad, too, without Elmo here.  I said that it was ok to feel sad and that sometimes when I was sad, I cried..then, as if right on queue, my own tears flowed.  Joe spontaneously broke into a whale, alligator tears and all.  I wasn’t sure if it was because he was sympathetic to my tears, or if he was, in fact, feeling sad.  Then, Jake screamed and hit his leg with his fist.  I thought how appropriate this all was, but wondered if they really understood what was happening.  We might never know.  We know they both definitely have feelings, but in our 27 years of experience, we also know that sometimes the feelings can be confused or misdirected.  Teaching feelings has been one of the most difficult things we have had to approach as parents.  We continued to talk about how crying was appropriate when we felt sad and when we missed someone.  Then, we moved right back into the comfortable routine, switched on “Jeopardy”, and sailed through the rest of the evening.

As the months after Elmo’s death passed, we would often hear them both ask after Elmo, and we would respond with, “Elmo is in Heaven, remember?”  To this day, Joe, especially, asks for Elmo, leaving us to wonder if it might have been easier to name our current dog, “Lulu” after him.  We are never sure if it’s just the habit of knowing that name, or if he really wonders about Elmo.  Again, we may never know.  We continue to wonder how we could improve on their understanding of death and loss.   
Just as that ole’ guarantee promises, the situation has again come to the surface.

This week, we lost a dear friend of the family, Jack.  We knew Jack for some years and he spent quite a lot of time at our house.  He lived about an hour south of us, but a visit required him to drive over something called The Palmer Divide, which is synonymous for extreme weather, often making it treacherous, especially in the wintertime.  So, when needed, he would stay with us and wait out the weather.  Then, Jack got sick.  As Jack’s medical situation progressed, he would travel to get treatment in our area, and we would gladly offer our home for his comfort.  It was a win-win because we all loved him dearly.  As time passed and the relationship between he and the boys solidified, Jake would ask for “Jack” on a regular basis, wondering when he would be visiting once again.  If I knew, I would tell him, but if not, I would always say, “Jack is at home today”.  Each time Jack would visit and then depart, hugs would ensue from both boys, which says a lot because they are not naturally drawn to hugs from anyone but Chris and I.

Jack grew sicker and sicker, and weaker and weaker.  The visits were more and more frequent.  His spirit did not dwindle much, always offering a “high-5” or hug to the guys.  Last week, he had his sister drive him up when he came to see us and chat about things that were important to him and what the plan for his upcoming next step would be.  We aren’t family, but he often referred to us as such, so we talked about many very deep subjects, including how he wanted to go to his final resting place.  It was a sad time for our family and for Jack.  

During this illness, we, again, did not do a stellar job of communicating with the boys about how sick Jack was, or involve them in the real adult conversations.  They were just there forming a bond with Jack and enjoying his company.  We now see that we could have done more to prepare Jake and Joe, but we were too busy having hope for a positive outcome, and not thinking about that inevitable loss.  How could we face the idea of loss when we were busy clinging to hope with Jack?  That’s a tough question.  So, now we are faced with the task of how to allow Jake and Joe to grow through this very sad occurrence, and teach them to be one step closer to understanding death and loss.  Is it wrong to want to use this situation as a teachable moment?  I don’t think so.  

Sometime this week we are planning to have Jake and Joe attend their very first funeral and graveside service.  After I gather all of the information and facts about what is going to happen, I will do my very best to prepare them for this.  It’s important.  We need to find a way to say goodbye to a friend while we are here to support Jake and Joe through it…on our own terms.  It promises to be a difficult teachable moment.

This brings to the surface a very difficult subject for us as parents of two children with significant developmental delays.  Our own death—our own mortality.  Our sons will always require some kind of supervised care.  Someone besides us will be in charge of this day-to-day task.  We have done all of the planning; the will, the trust, the life insurance, etc., in order to prepare for our own replacement.  But, what about preparing our sons for the loss of our presence?  Is this something that we can prepare them for?  Since we have no plans to send them both away to another living situation, we cannot do that kind of pre-transitional training.  I think we will need to depend on situational teaching involving people in our lifetime where we can use the opportunity to model what is going to happen. This is in sync with many of the things that we have successfully taught them in their 25 and 27 years respectively, ……and have faith.  Faith that they will be ok.  Faith that they will grow to understand.  Faith that everything will be ok…with or without us.  

“The connections we make in the course of a life--maybe that's what heaven is.” 
― Fred Rogers

To learn more about Cindi Rogers visit