Friday, November 12, 2010

On Death and Dying

I received a call today from a friend of mine asking me a rather simple question for which I had no simple answer. How do you deal with death when your child has an autism spectrum disorder? She asked me if I had a book I could recommend and the truth is that I didn’t. In truth we never actually turned to a book when we were faced with the prospect of death in our family. We actually just took the situations as they came and dealt with them the best way we knew how.

Honestly the first time we faced death in our home, was when collegeman was three and HSB was a newborn. My mother-in-law had been diagnosed with lung cancer and it metastasized to her brain while I was pregnant. We did not live near her but about one hour away. My sister-in-law, who herself had very small children at the time, was left to tend to her divorced mother basically alone. She dealt with it all and so did my niece and nephew who were 5 and 4 at the time. After HSB was born we were able to see my MIL a little more and spent several weekends visiting. I remember that she had a pond in her backyard that had Canadian Geese that lived there.

Well, of course my MIL hated birds and in fact was deathly afraid of them, so it was quite ironic that she had an entire flock of geese behind her house. So because there was a phobia about the birds when we went to visit the birds fascinated collegeman. He just couldn’t get enough of them. So being a grandma, she and collegeman would go out behind her house and feed the birds for as long as he wanted. Now the funny thing about the birds was that they loved Frosted Flakes. I know the Obama obesity police would probably have me investigated for geese abuse for feeding them this sugarcoated cereal, but collegeman loved to feed the geese. What I actually think he liked the best was that hubby would feed the geese and yell, “watch out for the goose poop.” Yep like all boys, he just loved the word “poop” and then attaching it to the word goose, made it rhyme so he would let out a really loud giggle, and collegeman liked the word combination too.

It was a truly nice memory, sadly, shortly after that my MIL became bedridden and it was a short matter of time before we lost her. Now how did this effect collegeman when she passed? He was only three and we are not quite sure that he actually understood what was happening. Truthfully we did not know at the time that he was autistic and apart from some speech delay there was no real indication outwardly.

The children that were effected by my MIL’s passing were my niece and nephew. They had been very close to their grandmother and it was a terribly upsetting event for them. In fact I remember, my nephew who was 5 at the time, got upset because collegeman wanted to play a video in her house after she passed. He grabbed the video out of collegeman’s hand and starting worrying that his cousin was going to destroy it. I tried as much as I could to explain to him that it would be OK, but he would have none of it. A 5-year-old boy had just lost his beloved grandmother and the pain in his heart was so very raw. I know without question that my SIL did what she needed to do for her children. Just as any loving parent would do. But I remember my nephew so very frightened that that videotape would be lost the same way he had just lost his grandma. Have no fear; today both my niece and nephew are wonderful kind and caring young adults. Of them I say, as Shakespeare would say of Juliet, “He who takes hold of her (them) will have the chinks.” *

We worry so much as parents of special needs children that events in our children’s lives will affect them so differently than their neurotypical peers. But I really don’t think so, not all the time. I have seen it first hand. A child’s love of their grandparent can take them to a world of hurt, but they recover. They learn what death means, and that it is part of life. I think that death is a hard concept for anyone to understand. For a young child it is just so much harder. To know that you will never lay eyes on someone again. To understand the concept of mortality, in fact to understand the concept of your mortality is what can overwhelm.

Now when did collegeman actually begin to understand death? I think it began in 3rd grade when his great-grandfather died. We had seen my grandparents yearly since collegeman was an infant. I thought it was something important to have the generations together and to have a relationship. He did not see them a lot, nor talk to them, but he thought of them all the time. When my grandfather did die we had to tell the school to look out for any behaviors that may occur. I think they forgot because apparently collegeman had been acting up and quite angrily in fact, and they did ask if anything had happened at home. Honestly it turned out OK, because they made sure to give him the extra attention he needed and he did get used to the idea that ‘Zayde” was gone. We would visit “Bubbe” without Zayde being there and what collegeman and HSB came to understand that this too is part of life.

Again I do not know how much collegeman understood about death at the time. I knew that he understood that Zayde was gone. HSB it didn’t really phase too much. Being only 5 at the time, he didn’t seem to attach himself to the concept of death. It wasn’t something that he thought about or seemed to contemplate. It was later on in life that you saw HSB understand death and that was when his grandfather, my father-in-law passed away.

I have to say this was a very hard time for everyone. My FIL has just been given a clean bill of health by his doctors. Told he should live a long life. Now hubby and his father worked together in the same office. One day, shortly after receiving that clean bill of health, FIL came into hubby’s office complaining about a terrible headache. Within minutes he was on the floor having a stroke. Hubby cradled his father and held him until the ambulance arrived. My poor husband held his father in his arms as he died. Now if you ask the emergency room doctors and the EMTs that came to the office, they would say that my FIL did not die that day. They put him on life support and kept him alive for days. But if you ask hubby he will tell you that his father died that day in his arms and that he was glad that at least he could have been there at that moment and that his father did not die among strangers but with someone who loved him.

Now the issue became while the family, especially hubby, was going through this terrible trauma, sitting outside the emergency ICU at the hospital, what did we do with the boys? They were much older at this moment. They were in middle school and understood everything that was going on around them. I explained to them that grandpa was in the hospital and that daddy was going to stay in the hospital for a while with him. However, what I had to do was make a terrible decision. What do I do with the boys and what do I do for hubby? I did not want to take the boys into the hospital. I did not want them to see their grandfather hooked up to life support. I did not want them to see the grieving relatives and the trauma that surrounded everyone. With all the support that I generally had around me, everyone was gone for the weekend. So to protect my children, I had to let hubby stay alone with his siblings in the hospital.

I have to tell you it was one of the hardest decisions I ever made. I had never actually had to choose between my children and their father before. But when you are dealing with autistic children I think you have to be very careful. They internalize everything. They see and feel everything. But what they don’t know how to do is process those feelings. They don’t know what to do with the feelings that can overwhelm them. It is a process that they need to go through to be made to understand how they are feeling and that it is OK. You can use all the standby tools, social stories, children's books, therapy games and even make sure to contact their regular therapist. But in the end, especially as they age, they need to resolve some of these questions themselves and no one may be able to help them with that, just like any neurotypical, they may need to figure these things out for themselves.

For the boys I kept their schedule as normal as possible. I sent them to camp. We ate dinner and they even went to their lessons. I did have to explain to them that their grandfather had passed away. I was not too sure how they would take it. At first they didn’t really register. We did not take them to the funeral. Their other cousins, all neurotypicals, were there, all of them, but it was not good for either of our boys to be there. Honestly I did not know how they would react and the last thing I wanted was for them to meltdown at the funeral. Luckily the person we counted on for support when dealing with the boys came back in town from vacation so I was eventually able to be there for hubby in the way that he needed.

Now we had taken them to the funeral home several days before the funeral when hubby and his siblings met to pick out the casket. The boys sat quiet listening to everything that was being discussed. They stayed in a nice little office, sat on the coach, as the adult siblings discussed arrangements with the undertaker. They were quiet and reposed and had their handheld game systems at the ready. Collegeman did look a little like a deer caught in the headlights, and HSB even started to cry but he wouldn’t let anyone see. I asked him if he wanted to talk about it, but HSB wouldn’t admit that he was upset.

The problem that I have is that I am never quite sure how they are going to resolve internal conflicts. Today collegeman is very logical and thinks things through. He looks at incidents with a cold calculation, almost like he is a Vulcan, while HSB gets very emotional and openly shows how he feels, two very different boys with the same diagnosis. So don’t let anyone ever tell you that there is just one way for people on the autism spectrum to handle any event. Their responses are as varied and as different as they are. I think it is as with everything else having to do with autistic individuals, the reality is personal to that person and you have to handle the situation as it pertains to each individual separately. There is no one set answer.

So how do the boys handle the concept of death? Truthfully by insisting that above all they are not going to die. Collegeman likes to find reasons why his grandparents passed away so young and tries to conceptualize why that will not happen to him, as I said logical. HSB just doesn’t talk about it, and if he does, talks about God and how it is going to be along time in the future, alternatively he has also decided that he is not going to die. Have I mentioned before, that HSB has this little stubborn streak?

So as I look back on how we handled death and dying in our household with two autistic boys I find that there is no one answer to the question. Each situation is different and each age that the children happen to be at the time plays a large role in how to handle everything. One more thing that is very important to note. Neither of the boys had a truly intense relationship with any of their relatives that have passed away. Their relationships were always peripheral or very long distance. It is not as if they saw any of their grandparents or great-grandparents on a regular basis and if you have a situation where a loved one actually lives in your home or you have regular contact then how to handle the inevitable is very different.

I tried to balance throughout these events what would be best for my children and what would be best for all concerned. I may not have always made the right decision. You may disagree with me on what I did or did not do. But at the time, it felt right and proper and the best way to protect the boys from being overwhelmed to the point that society just would not have understood.

So for this issue, I have no answers. I am not even sure I am able to give a point of reference other than do what your instincts tell you to do. That is what I did. Trust yourselves, you will know what is right for your children.

Until next time,


*Shakespeare is talking here about what an extraordinary person Juliet was, and that beyond her father's money (the chinks) she was herself a prize.