Harry’s Heart and Humor – Part 4 – Don’t Take Education for Granted
Once I learned that my son wanted to communicate with me more but that in his words he, “best hears usually in the morning”, I had to shift and not wait until after school or days end to ask my “ grand awesome questions”. He let me know via typing that he thinks listening to Opera music is “an end to a nice day”, and he revealed he is, “targeting all focus on acing circus of communication”!
Over the next 6 months he continued his weekly sessions with Katie. I was surprised to learn he knew that the color crimson was red, and that Richard Nixon was president in 1972. He was like a sponge absorbing so much new information and illuminating to us a great deal of what he already understood. Katie brought in different lessons each week, but Harry expressed that he was “longing to do the great wall” and that he wanted her to “add china under every lesson I have lots to learn”.
In the fall of 2015, my dad had become ill and it was decided that in order for him to live past his 87th birthday, that he needed to have heart surgery. The idea of this was terrifying but I trusted the doctors and set out to make plans to travel to Boston where he would be operated on at the beginning of November. Harry was very close with his Papa, we visited Massachusetts 1-2 times a year and most years my parents made a trip out to California to spend quality time with us. I was extremely conflicted because I had never gone anywhere without Harry. I did not see how I could make this trip in which many hours would be spent in a hospital, be there to support my mom, and still take care of all of Harry’s special needs. After much turmoil I decided to leave Harry in California with detailed instructions for the male “dream team” consisting of his Dad, Step-Dad, and our trusted Adaptive Skills Instructor, Earnest.
In his Speech session with Katie, before I left Harry spelled out “i talk at last about growing up”. Katie asked what he would like to say about that and Harry spelled, “time to listen to mom and know I am getting to independent harry time”. When asked what he wanted to do with the guys while mom was gone, Harry spelled “eat red meat”! I thought this answer was hilarious, and after we all had a good chuckle, at the end of the session Katie asked Harry what he wanted to be for Halloween and he spelled, “ I elect myself to be leader of usa”!
A week later I had gone to Boston and returned to LA with a heavy heart and my dad still in the hospital but on the road to recovery. In the next session with Katie Harry typed, “week was not so hopeless”. He had so much energy in his body during this session; I wished we were back working on typing at We Rock The Spectrum Glendale where he could jump on the trampoline or zip line and crash to regulate his body. Katie asked what was going on and he typed “molecules noisy”. Katie asked him more specifically what he meant and he typed “omg im so escalating into excitement”! Katie questioned, “Is that a good thing or bad thing? “ and he typed, ” know living noisy isnt steady “. We were recognizing these times where Harry could barely sit still while trying to type, as those moments when he had something important and personal to communicate. Many people get uncomfortable revealing something personal, and I was incredibly moved and proud of Harry’s efforts to share his thoughts.
My dad took a turn for the worse soon after I had returned to LA. He went into cardiac arrest for over 10 minutes. They were able to revive him but he remained in a coma, on a respirator and unresponsive. Despite my best efforts to hide it, Harry knew I was extremely sad and stressed. One day before he left for an overnight at his dad’s house, I asked if he had anything he wanted to say and I presented him the letter board. He spelled “stay open”. I asked what he meant and he continued, “about papa”. He left and I balled my eyes out. I decided not to return to MA before he was taken off life support, but to hold on to my last memory of my dad alive, sitting up in his hospital chair kissing me goodbye. I waited to get the call of his passing while I helplessly used up nervous energy rearranging furniture in my house. I told my kids that they would not be seeing their papa again and that we needed to prepare to go to Massachusetts soon for a funeral. I asked Harry if Nana wanted to come back to California with us so she wouldn’t have to be alone, would he be willing to give up his room for a while and he spelled, “ yes at least im helping her”. For those of you that don’t know anything about autism, one very common characteristic is interest in routine comforts and sameness. I knew changing his room to be a huge unselfish gesture by my teenage son and I was humbled. In speech that week with Katie he typed that he wanted to learn about “inventions for illness treatment”. She read to him from a book about game changing medical advances and he was fascinated. At the end for his last thought he typed, “don’t take education for granted”!
My dad died on December 9th 2015. In the three weeks I was in Massachusetts following his funeral Harry refused to type with me. When I presented him with a letter board or ipad, he either refused or simply spelled out “ no” or “move”. I asked him one day for just one different word about how he was feeling since we got to Massachusetts and he spelled, “peace”.
We returned to California with my mom just before New Years 2016. When school started back up, I brought her with me to Harry’s speech session with Katie 1/8/16.
All of his typing on this day was on the ipad.
Katie: “What do you want to work on?”
Harry: “know i am rusty”
Katie: “ It’s ok. What do you want to warm up with? We can do mountains or inventions…”
Harry: “ introvert”
Katie: “Who is “?
Katie: “ What’s another word for introvert”?
Harry: “sadness makes language or communication go inside”.
Katie: “Well you normally are a pretty outgoing guy, do you mean you became introverted in Massachusetts temporarily?”
Katie: “how is it being back now in LA”?
Harry: “painful to loose grandfather angry”.
Katie; “Is there something in particular you are angry about“?
Harry; “life is short”.
The above was the longest fluid exchange of a conversation that I had ever witnessed Harry engaged in his entire life. It took approximately 40 minutes with Katie’s extremely patient pauses and encouraging words motivating him all along the way. Harry used his index finger, scanned the keyboard with his faulty eyes, and with his motor planning challenges, he laboriously pointed out each letter one by one. At the end as she usually does she asked him if he had any last thoughts and he typed,
“ i am unifying my families grief”
This piece is written in loving memory of Dr. Bernard Portnoy. He would be so proud of Harry’s Heart and Humor. My dad’s wise words ring on in his grandson, “ don’t take education for granted”. Dr. Portnoy retired as a pediatrician on his 87th birthday. To read more about his life click here.