Summer 2012

Progress.  School was out.  Daycare was not a great environment for Mickey because it was too many kids in one room and from a sensory perspective it was tough, but we didn’t have nearly as many issues as I feared. Meltdowns at home were less and less.  Other than one notably embarrassing meltdown in a Target we were mostly able to go places and do things.  He was less unpredictable.  I started to see warning signs and even though they weren’t logical to me, I was able to remove him from situations or get him to use coping skills before the meltdown happened.  Therapy continued.  We ran through 2 CSI’s, one who left because she was pregnant and on a bad day Mickey through a pencil at her.  It scared her and me.  The next was a large man, former military.  He had mickey do pushups and physical activity during the sessions.  It distracted him enough that Mickey would talk.

Mickey was starting to be able to voice fears and emotions.  He still mainly used colors, but he was starting to identify when he was happy or sad or angry or scared.  That was huge.  Our vacation was coming up in July. Then we got a phone call that changed our plan.  Two weeks before our trip, my grandfather had a stroke.  We were called home to Indiana because he wasn’t expected to make it through the night.  I packed and picked the kids up and we left immediately.  I was emotional and Mickey, for all his issues identifying facial expressions and nuances, knew something was wrong.  I needed to set the groundwork in case my grandfather didn’t make it.  Mickey and Minnie had not met their Great-Grandfather yet, so when Mickey asked “is he going to die?”, I didn’t shy away from the question.  I told him it was possible.  He cried.  Minnie cried.  I cried.  I adored my Grandfather and desperately wanted him to meet his newest great grandchildren and via our phone calls, I knew he wanted to meet them too.

My dad drove up with us, in the car ahead.  I hadn’t ever attempted a road trip with the kids and my dad was heading up anyway, so we followed each other and drove late in the night.  This turned out to be a good thing because an accident extended our 6.5 hour trip to nearly 10.  The kids slept most of it, and my dad was able to sit with them for restroom and coffee breaks, so that I didn’t have to wake them.

We arrived at my cousin’s house at 6am.  I dropped our stuff and my cousin offered to watch the kids so I could be with my Grandfather.  We had no way of knowing how he was in the overnight hours and we agreed that it may not be the best introduction for the kids.  So, I went.  My grandfather was not only still alive, but overnight had improved.  He was awake and alert.  He asked me to bring the kids and I did.  Minnie charmed him with a solid hour of her ballet moves.  Mickey loved him instantly.

We then went to the nursing home to visit my Grandmother.  Her health had been in decline for a couple of years and at 89, she was not well, but still of sound mind.  She is the quintessential Grandma – her Grandchildren can do no wrong, and the parents are to be disregarded completely.  Minnie climbed up in her lap and when I tried to tell her not to climb all over Grandma, she did the verbal smack down I had heard hundreds of times in my life, but it used to be directed at my mom in reference to me or my brother.  It was neat to see her embrace her newest great grandchildren.  We have a large family and my grandparents were already great great grandparents, but my children felt the love that I had known my entire life.  Unwavering support.  My grandpa asked lots of questions in our weekly phone calls, but they were infatuated with my children and my children knew it.

My cousins mobilized and moved all the fun stuff we had planned to the week we were there instead.  There were cookouts, fishing, tons of time getting to know their cousins.  They were welcomed.  Mickey was great.  He was mostly under control the entire trip.  He was relieved that Great Grandpa was doing well and by the time we left, he had been moved to a rehab facility in the same assisted care facility my Grandmother lived in.  So, they were able to spend even more time together.  It was the perfect trip.

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Minnie fishing with her cousin and Mickey fishing with another cousin.

The trip home though we seemed to see setbacks.  First, Mickey was, and still is, pretty adamant that we belong in Indiana with our family.  He wants my parents and my brother to go too.  He doesn’t understand why we would ever live so far away.

After we got home there was further regression.  Lots of meltdowns and more issues than we had seen in the month before the trip.  I thought we would never be able to take a trip again.  About two weeks after we got home, in frustration I said “I don’t get it Mickey, you were doing so well.  What happened?”  He burst into tears and said “If your Grandpa can die than so can mine”.  This was a huge aha moment for me and also a big moment for him. He would associate things in a way I wouldn’t have thought of.  His fear over my dad dying was real and it had never occurred to him until my Grandpa was ill.  I explained that Great Grandpa was my Dad’s father and there was no reason to think that he wouldn’t live to be as old as his parents, which meant we could have 30 more years with him.  That seem to mollify him and we started to progress again, that one issue could derail months of work.  We would see that type of regression time and time again, but usually once we identified the underlying cause, we could get him back.

That for me is the frustrating part of Autism. Mickey is very verbal, but struggles to verbalize feelings, fears or concerns.  He will bottle up things like that and his concerns manifest themselves in behavior.  That has improved somewhat, but not as much as I would like.


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