Hearing and Writing the Words at Last: Jim's Story

Jeanette J.A. Holden, PhD, Queen’s University, Kingston, Ontario, CANADA

December 2007

I planned on writing Part 4 of Jim’s story in the spring when the daffodils and tulips adorned our garden. I imagined Jim, Mom and me weeding the garden and watching the transition from the snow drops and crocuses to the early, then mid, and late tulips, with daffodils springing up in the grass where we had naturalized some in the fall of 2006. I was looking forward to seeing how our new garden and its multitude of perennials survived the winter and seeing them develop and blossom and be the showcase that we had hoped for. I was looking forward to people jogging along our country road and stopping to admire nature’s wonders. Sadly, I missed all of this – on May 1 I was diagnosed with AML (acute myelogenous leukemia) and spent the most beautiful month of the year in the hospital. I did, however, have Mom and Jim and JoAnne (Jim’s worker) visitng almost every day and friends coming and sending cards and notes, which adorned the wall of the hospital room (they are still up in my bedroom). And I had the most wonderful view of Lake Ontario and the waters flowing towards my room and all the other cancer patients – with waves of thoughts and wishes and prayers for good health lapping the shore. And all of this worked – I am enjoying every minute of this precious life and am ready to share more of Jim’s achievements during the year with all of you.

First, though, I need to say some more about my time in the hospital – but not about me, about how Jim handled this, because Jim has always been afraid of hospitals and wary of doctors. He had a hernia operation when he was a year or so old – and he was always frightened of the doctors after this experience. Mom heard many years later that they didn’t anesthetize babies at that time and it may be that Jim was completely aware of everything that was happening to him, and that this frightened him so much – I can’t even imagine what he must have gone through – of course, no one thought to explain it to him (who would – he was an infant! But what if he was wondering what was happening and couldn’t figure it out……).

Jim was born with club feet and had braces that were adjusted every couple of months to straighten them so he would be able to walk – again a terrible experience for him. Then when he was around 7 or 8, he caught his arm about in the wringer from our washing machine. He has quite a large scar, and remembers the incident vividly. Jim has always liked watching the laundry being done, and still does like to listen to the swishing sound. I believe that it is calming and he relaxes – and perhaps he just thinks about things, and is trying to make sense of his world. We all like to day-dream, and I believe this helps him to shut out the noises of the world and to retreat into a bit of quiet and reflection.

So, these experiences with the hospital certainly affected him deeply and until a few years ago, he was so frightened of doctors that we couldn’t easily take him for check-ups. The big question was how would he deal with my being in the hospital, and perhaps not coming out again. Mom has been trying to get him used to doctors and hospitals so that he wouldn’t be afraid, but this was not the kind of experience we had prepared him for….. He was amazing – he wanted to come to see me every day, or to at least talk to me on the phone. He knew I had to be there, but how does one explain leukemia to anyone – let alone someone with autism? The only time he became upset was when I was in isolation (I received the gift of C difficile and vancomycin-resistant bacteria and was septicemic after my second round of chemo). When he was told he and Mom and JoAnne needed to put on yellow gowns and gloves to see me, he became really upset – we had forgotten to warn him. Once we did explain, he calmed down, but this took a long time. Take home message: No matter what happens, do not forget to prepare a person with autism for changes – I think that Jim wondered whether he, Mom and Jo-Anne would also have to stay in the hospital. What would anyone think in this situation, when no explanation is provided. He was simply trying to make sense of what he saw happening. So much for cognitive disabilities!

There were some really funny times too ….. When I lost my hair and asked Jim about it, he said “Bald” (I didn’t know he knew the word “bald” – but he did!) And he quickly followed this with “Kojak” and “Telly Savalas” – well, now you know how I looked!

And then when my hair started coming back – Jim said “All better – no more hospital”. Interesting…… I think that this was the most obvious marker for my illness – losing my hair – and he figured that when it came back, then I was all better. He even said he liked my black and white (lots of white!) hair. Those of you who know me, know that my hair used to be dark blonde (and white!) It’s an interesting difference and one that I celebrate with Jim as indicating that I am all better!

Almost the first thing I thought about when I received my diagnosis – was going home. And I visualized a new garden – along the walkway to our house – a Garden of Hope and New Life. I shared this with my family and friends, and when I got out of the hospital on May 31, I walked from the car to our house along the most beautiful garden in the world. My wonderful family, friends, staff and students had dug and planted a long and wondrous new garden – filled with flowers of love and hope – plants that we would all see year after year after year – welcoming us and everyone to our home. I wish you could all see it – and if you are ever in Kingston, Ontario – please just call and come on over!

Although I didn’t get to do much gardening during the year, Jim did!  Wow!  He is an expert at removing weeds from the grass, cutting the grass and helping with weeding the gardens. When others removed the weeds from the garden, Jim picked them up and brought them to the compost area – for those of you who are gardeners, you will know how much this is valued!  And how much time he is saving others!

Another favourite activity for Jim is cycling. He spent a couple of hours each day, cycling around some of our gardens. In an area where rainfall is rare in the summer, this meant that he made a bike-track around the gardens on one side of our house!  No matter, the grass didn’t need any cutting there and he was having a good time. Perhaps more than a good time. We noticed that he didn’t like to be disturbed while he was cycling – and he would go on for more than an hour at a time, if we let him – and this might happen a few times a day. Although we know he loves cycling, this became more than a time for him to be enjoying something by himself. We noticed that he was thinking a lot and we believe he was trying to make sense of my going to the hospital so much and that I wasn’t quite right yet. He spoke more and more about my “staying home” and “no more hospital” – we think that his cycling (kind of a perseverative activity) was his chance to be alone and to try to figure out what was going on. Once I was home more and clearly much better, he didn’t seem to need the hours of cycling as much. I think it is really important for us all to remember that individuals with autism (whether they are verbal or not, and whether they can articulate what they are thinking or not), need to have time to figure things out for themselves……. Not very different from the rest of us, is it?

By September/October, I was planning the next phase of our garden – planting daffodils and tulips in the grass separating our 2006 Walkway Garden and our Top of the Septic Tank Draining Garden (not a very romantic name, I must say!) Jim, Mom, JoAnne, Glen and I planted about 700 bulbs in the new gardens and in the grass – and Jim is an expert!  I promise to post some photos of this year’s work in the spring!

I think the thing I missed most while I was in the hospital at various times this year, was Jim’s talking. I had become so accustomed to his voice and him sharing what he was thinking about. It is truly music to all of our ears.

Jim is also telling us even more in his writings – he decides what he wants to write about and gets help with words he doesn’t know. Remember that all he writes has to be done by memory, because he has moderate hearing loss and can’t use phonics to help him, although we are trying to help him sound out letters and he is doing a great job with this.  Yesterday and today, he has been telling us about when our family went for a trip to Yakima in Washington (we grew up in Vancouver). We apparently bought some “Colonel Chicken” and “had a picnic” – and a “piece of chicken fell on the ground” and “don’t eat it” “put it in the garbage”! There is a “high mountain with snow” and “we drove up and up the mountain”. He must have been around 10, perhaps younger. Jim just had his 55th birthday – so these memories are almost half a century old. I wrote in an earlier part of Jim’s Story that we don’t know how much information non-verbal individuals with autism are taking in, but it seems that it is a LOT – Jim was essentially non-verbal as a child and until a few years ago, but he was taking in everything…..

Jim has a second worker now – Glen – who has been working with him since July. During August, Glen brought over his power washer and the two of them washed our decks and then waterproofed them – Jim had a blast (pun intended!). Next they removed the stairs to the deck and put in new ones. Jim loves using a screw driver and making things from wood, so this was a great way for him to spend some days!  During the last few months, Jim and Glen have been making new shelving units – for Jim’s bedroom, to put his CDs and VHS tapes on, and for our garage and various storage areas. They are definitely the expert team now!  Jim loves to sand – with a rotary sander and detail sander – so this has been a wonderful match!  He’s looking forward to more projects next year.

Jim got a Scrabble game from JoAnne for his birthday, and he just started using it – for spelling words. He selects the letters and writes all kinds of words!  I believe he will start to use it as a regular Scrabble game next year!

Well, Everyone, before I quit for this year, I do need to say that Mom was diagnosed with breast cancer in late October and had a lumpectomy November 19. She will be having radiation treatment beginning in late January or early February. I know she will do well – she has been through so much with me this year and is incredible – and 85! Jim came to all the appointments at the hospitals, and has been remarkable – calm and curious. He remains happy and delighted with life and all it has to offer – how can we do anything less?

I will close now, with the promise to share more in the New Year – Wishing Everyone a Very Happy Holiday Season and Good Health and Much Joy in 2008. I hope you will take the time to read The Daffodil Principle – one of my favourite stories. Whether planting bulbs or seeds or ideas or sharing your love, the principle applies. May you surround yourselves with a Sea of Love and Hope Always.


Part 1

Part 2

Part 3

Part 5