I know it's been a while since my last blog entry.....I apologize for that. I knew after my last post that this next one would be the most difficult to write -- sharing how I explained "death" to our Autistic child. As difficult as this will be for me, I know it's a story that must be told....and perhaps our experience will help someone else. I guess that is the whole point of this blog right? To give me an outlet -- a place to tell our story -- and at the same time, hoping that our experiences will help another parent or another child dealing with Autism.
I can honestly say without a single doubt in my mind.....every challenge, etc that we've faced thus far -- is nothing compared to the challenge of how to explain death to a child. It's hard enough for a "normal" child to deal with....but when Autism is thrown into the mixture, it is the most difficult thing in the world in my humble opinion. As I said before, aside from the death of a family pet (a cat)....our children haven't had to face the loss of someone close to them -- someone they loved -- until the death of their beloved uncle Frank.
Our youngest son understood it on some level....as did son #3, but I think since they are both still young it really didn't sink in until they were at the funeral home and saw their uncle's body in the casket. Son #2 took the news hard -- and he closed himself off & shut down his emotions for quite a long time. He loved his uncle more than words can express....my brother is the one who helped to fuel his passion for anything and everything "Star Wars". During each visit, they would sit and talk about all of the different characters in the various movies, etc. and my son loved to show his uncle the new figures he had. My brother loved old cars, swap meets, etc. -- and you'd often find him at some type of swap meet or toy show, selling his wares with the rest of the vendors. We'd often go to the local toy show to hang out & spend time with him.....I remember the one year, shortly after his cancer diagnosis...the kids & I went to spend the day with him & his wife at the show. We walked around and looked at all of the items, and he helped my son pick out some new Star Wars toys. It was funny watching my brother teach my son how to "wheel and deal" with the vendors.
And of course he helped "Taz" as well....Taz loved everything about cars....Hot Wheel cars, race cars, Nascar, etc. -- if it had wheels & could be driven, he loved it. Thus my brother would talk to him about cars, engine parts, and everything in between. My brother was always so patient with Taz -- would answer the millions of questions he had without treating him like he was being a royal pain. Frank was impressed with Taz's photographic memory and his ability to rattle off facts about various cars or race tracks. Aside from cancer, my brother also had Parkinson's....I don't remember if I mentioned that before or not. Due to the health issues, my brother wasn't able to walk as easily thus he resorted to using a motorized scooter to get around. Well Taz just LOVED that scooter....and in a matter-of-fact tone one day he said "uncle Frank, when you die can I have your scooter?" Instead of getting angry, Frank just laughed and said "no, I'm taking it with me." Yep, he had a dry sense of humor! Every time Frank's butt wasn't parked in the seat of that scooter, Taz would try to climb on it. Frank never got angry though...he'd just smile and say "Taz, get off the scooter". Taz would plead with him to take a ride on it, and Frank would just smile and say "not today". I look back on those memories now and just smile....I love the way he always joked with Taz about the scooter and how patient and supportive he was.
The day my brother died, I somehow managed to pull myself together and finish the social story book I had been working on that would help with explaining death. I included basic pictures of things like a casket, urn, grave, tombstone, etc and simple info that explains what happens when our body dies. I also included various religious information (both Christian and other beliefs). I wouldn't have been as prepared had it not been for the help of my in-laws (who own a funeral home)....they were wonderful with providing photos and information. I strongly suggest to anyone reading this -- if you have to discuss death with a special needs child -- have a book -- either one of the many books that are out there (I didn't like most of what I found, thus the reason I made my own)....or make your own simple book. To also help prepare the child (and this goes for all children, not just special needs children), try to visit a funeral home ahead of time so they can see what the inside of the building looks like and perhaps even allow them to see an empty casket....stop at a cemetery some time and explain about graves and tombstones.....doing things like this will be extremely helpful in preparing them for what to expect. If you can remove some of the fear of death ahead of time -- it will help them to understand it all and to be able to grieve in a better way.
So anyhow.....on the day my brother died, once the school bus arrived, I was armed and ready.....prepared to share the sad news with the children and prepare them for what would come next....the grief and funeral. We sat and talked, shared our favorite memories of their uncle.....and we cried.....so many tears. I explained to them that although it made them sad to know their uncle would no longer be here with us on Earth, they should also be thankful that he was no longer suffering....no longer battling the cancer that was slowly destroying his body. They should be thankful that their uncle was no longer in pain.
The day of the funeral came.....as much as I tried to prepare them, nothing can really prepare a child for what they will experience. No matter what grief I was feeling at the time, I knew I had to push it aside -- pull up my big girl pants -- and be "strong" to help them deal with everything. We walked into the room, greeted other family members....and slowly began to walk around and look at all of the floral arrangements and photos that had been hung up on the huge poster boards. Once the children felt comfortable, I asked if they wanted to approach the casket.....I walked them up, one at a time and gave them the chance to say their final goodbye to their beloved uncle. Finally it was Taz's turn.....I didn't want to force him to approach the casket, yet I wanted him to be able to see that yes that really was his uncle -- so he could make the connection somehow in his brain that yes his uncle was gone. All things considered, he did well -- we walked up slowly, he asked a few questions and then said "bye uncle Frank - I'll miss you".....then quickly ran off to the safety of the other room. We allowed him to sit in the "side room" as they called it, away from the rest of the crowd during the funeral service.
My heart ached for him.....and I couldn't help but wonder -- "did he really understand all of this?" -- "Would he ever be able to express the correct emotions over losing someone that he loved?" He never cried -- not once. Although I could tell just how much it was hurting him -- his brain just wasn't processing the emotions the way that it should. He was more concerned about other things -- how long the funeral would last, where would we be going afterwards, would we be stopping for something to eat, etc. While we were there for the visitation and funeral service, we stopped at my mom's house to visit with her. I remember sitting there watching mom & Taz talk to each other.....both in some ways lost in their own little world -- their minds not working the way that they should be. Mom's Alzheimer's had gotten worse, thus even though she was taken to the funeral home separately so she could say "goodbye" -- she didn't seem to grasp the fact that it was her only son laying in the casket.....she didn't seem to understand that her son had just died. In some ways I guess I'm thankful for that -- thankful that her mind couldn't process it all....thankful that Taz didn't seem to completely either. Perhaps that was a blessing in some ways?
I knew in my heart that either way, the true test was yet to come.....my mom's health declined after Frank's death, and we would lose her just 8 short months later. As difficult as it was to lose my brother -- our children's beloved uncle -- I knew in my heart that it would be ten times worse when my mom (their only living grandparent) passed. All of our children were so close to her -- and Taz was always so protective of her -- he would hold her arm to help her walk, push her around in her wheelchair with such love and care, etc. Yes, as difficult as it was to lose their uncle....the true test was yet to come....the only question being -- would I be able to be strong enough to help them get through it? Time would tell.....
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