Autism Does Not Take A Holiday – Even For Death.

Confession: I didn’t tell B about his Pop Pop’s passing until before we left to go to up to the farm for the funeral.

However, he had an inkling that we were going to Pennsylvania because he overheard me speaking to Husband’s family about it.

When I came back with Grandma before Christmas (I didn’t want her to be alone and thought the kids would be a good distraction) – I assumed I would have the conversation with B right when I walked through the door. But, no, he didn’t say a word.

I waited for him to bring Pop Pop up, much like when he noticed Jackpot wasn’t there. He didn’t say anything. Then it was Christmas Eve…not a good time. Then it was Christmas, DEFINITELY not a good time.

So Thursday morning, December 26th, I finally sat him down and told him about Pop Pop. I explained that he was now in Heaven with Jackpot and making sure everything was ok. B said, “Pop Pop was sick” and I said, yes – since that’s what I said each time I had to leave him to see Dad. I got very teary-eyed and he gave me a hug. He gave Grandma a hug too but I don’t think he processed fully what I said.

That was only the start. You see, being that it was the holidays, “Mickey’s Christmas Carol” was on heavy rotation at the house. Remember the scene where the Ghost of Christmas Future was showing Scrooge the scene with Mickey laying Tiny Tim’s cane against the gravemarker? Ugh. The questions started back then. I tried to explain, in the most realistic but not sordid way, about death and how people are buried in cemeteries. So, even before Pop Pop passed away, he was drawing scenes of churches and cemeteries. Try explaining that to teachers during the holiday season.

Pop Pop’s death kicked it into overdrive. His hypofocus nature was naturally intrigued with the subject of dying, cemeteries and church. The echolalia would not turn off for the next few days.

I wrestled if they should attend the service. Mayita will most likely not remember anything (and I say this from experience as I apparently attend my grandmother’s funeral at the same age and remember zilch). B, however, has learned to recognize faces and emotions. I didn’t know how he would handle it. I decided in the end to have them come.

Ultimately my decision was based on experience as well. My older sister was not able to go to the same grandmother’s funeral I alluded to earlier. My grandmother also died in December, but in Texas. Mom didn’t want her to miss more school and my sister did not forgive her for many years.

Dad’s service had a 2 hour visitation prior to the service that Friday. As family we were there even earlier to have own private viewing beforehand and make sure everything was “ok”.

When we were making arrangements, we provided a slew of items that memorialized Dad. There was his Air Force Uniform and his jacket from CB Radio days. He had a Little League jersey from when he coached my little sister’s team 25 years ago. There were the awards that the local Lions club gave him, and so forth. So, when we arrived at the funeral home, I took B around and showed him those things. I didn’t take him to show Dad at that time.

I also explained how this was a “sad time” and that we need to use our “inside voice” today. That of course meant that anytime he noticed someone talking or even cracking a story about Dad he was the one to put them in their place. Ah, the literal way of thinking, you know.

Being there for such an extended amount of time proved to be hard for both kids. I think it was maybe 45 minutes before the “ants in the pants” dance started. I am thankful that we brought the iPad and all the doodle books and the snacks and whatever else I was able to shove in a bag to amuse them with in another room. Husband stayed with them while I stayed out to meet mourners.

It was bittersweet seeing family, some that I hadn’t seen in many years. Before my dad’s diagnosis, I was attempting to plan a 40th wedding anniversary party for my parents last summer for family to attend. The surgery torpedoed that. We kept saying that “once Dad got better” and the “weather got nicer” we would make sure to plan something.

Ha.

On a positive note, B took a shine to one of my older cousins. I’m grateful that she enjoyed him, because he took a hold of her for at least 30 minutes to draw pictures of cemeteries and churches. Oh and to talk to her about death. He had lots of questions, and she tried to answer them (as she told me later). Bless her because she was patient enough to listen and talk to him.

B's drawing from that day.

B’s drawing from that day.

Finally, it was time for the service. Again, I had to make another tough decision – what to do about the kids. In the end, I had Husband stay in the other room with the kids during the service. This was a selfish act on my part I knew I wouldn’t be able to focus with two kids doing, you know, what kids do. Which would be to fidget, get up, talk, etc.

We had a short and sweet service. I think Dad, man of few words, would have appreciated that. As Dad served in the Air Force, the funeral home arranged for a bugler and two others for the flag folding ceremony. I kept pretty reserved until Taps started, in which I burst into tears.

At the end, when everyone else streamed back up to Dad, we were able to have our final goodbyes. We were all standing around and there were definitely tears to be shed. But the one person that B looked to was his cousin, A. A is almost 13 and definitely was much closer to Pop Pop. A was very emotional at this point looking at Pop Pop.

And THAT’S when B, I think, finally realized what was going on. Nothing like a delayed reaction to get you going. The wails and the sobs that were stifled inside B finally had the chance to let loose. And oh boy did they – all the way from the funeral home to the church (where we had a “reception” for lack of a better word). We didn’t have a burial – we never got Dad to explicitly state his wishes. I knew he wanted to be buried at the church. Alas, there were no more plots in the church cemetery. He did bring up the potential of cremation though. So we are attempting to do both – we are still waiting word to bury his ashes with his parents on their plot.

In the end, an early start, strange new settings, a big event with lots of people and noise, cold weather, and little downtime culminated into a major meltdown back at the house. Mind you, my family followed us from the church back to the house for more family time so the chaos followed us home. If I hadn’t seen these people in many years, that means B has never met some of them. That’s so much stress for him to face and I felt immensely guilty.

We knew he needed a “break” but he fought us tooth and nail. Lord knows we tried. We finally placed him in my Mom’s room so he could relax but it took a long time for him to come down. Once all the extended family left (they invited us to dinner but we smartly declined that one), he was finally able to decompress. He actually stated that he was ready to go to bed after dinner. And since Mayita didn’t get a nap either, she fell asleep at a relatively normal time as well.

By the end of our stay we were all pretty frazzled with constantly adapting to new things. My parents’ dog came back after an extended stay away – which scared Mayita to high heaven. My sisters left on Saturday, taking A and dog Sophie which made B lonely and bored. B headbutted me in bed on Sunday morning which put me in a foul mood.

We stayed until Sunday because I wasn’t ready to go – but I knew we had to, in light of our own lives. Surely getting back home did wonders for B – since he had his bed, his toys, his surroundings back. He was able to settle back into his life which means that helps me, hopefully readjust to my own life detour.

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About OneLoCoMommy

I live in Northern Virginia and and I look like the stereotypical suburban mom, for better or for worse. I drive a minivan. My son plays soccer and takes karate (albeit adaptive). I've been a Room Mom and Playdate Coordinator. I work full-time, try to work out, and love my Book Club. However, I also blog on my experiences on our ASD, SPD and ADHD journey while trying to be a better parent advocate. All in a life's work.
This entry was posted in Autism, Autism Awareness, Family, Life, Love, Mayita, Mayor Bee, Ramblings, The Lows and tagged , , . Bookmark the permalink.

2 Responses to Autism Does Not Take A Holiday – Even For Death.

  1. Lisa says:

    Oh, my heart. I have been where you are..and want you to know that you are in my thoughts and prayers. The grieving process is tough…and like so much with autistic children, not very linear. Hugs.

  2. I’m sorry for your loss.

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