The Things We Need To Say

One of my childhood nicknames was Hallmark. I was the kid that made greeting cards for everyone and filled them with heartfelt words, expresssed in language beyond my years. As I got older and caught up in the blurr of life, I drifted onto the path where being busy was an acceptable excuse for not reaching out to others. There were more phone calls from telemarketers than from family and friends and text messages devolved from words to letter soundbites to emojis — even Facebook had an options for those way too busy to post by way of the poke or wave. Like so many people, I didn’t have time to talk to anyone who wasn’t providing me with something I needed and once the day wound down by the time I remembered I hadn’t spoken to my family or friends in a while, I’d glance at the clock and realize I was probably the only one who wasn’t asleep.

As we made the leap from television and radio to online streaming, the world became louder. We hear about everything moments after they occur. From people of power called out for tweets gone wrong to every new varient of the coronavirus discovered, to every fire, flood and frivolous fanfare, we are bombarded by the noise of the world. Yet, we are deafened by the silence of our lonliness. Even when I found myself sitting across from friends in person or virtually, I recognized how disconnected I’d become from people I actually had relationships with. We’d bounce from one meaningless topic to another until one of us blurted out the words of saving grace “Well, I gotta get going. Chat soon?” Yeah, right…..more like the Jamaican’s say “soon come” (meaning sure someday, some indefinite time in the future or maybe even NEVER) and as I slipped back into this life of mine that I thought was so busy, I turned up the volume of the noise of the world to drown out the loudness of my lonliness.

As my sons got older, I decided to teach them how to not get lost in the so-called busyness of life. After all, if it weren’t for them desperately trying to be heard by the adults in their lives, I might not have been able to re-direct myself onto a path that allowed me to be a less busy, more attentive human more generous with her time. As awkward as it can be, I make it a point to tell the people in my life regularly how I feel about them. We all want the people who matter to us to tell us the things people only say to each other in the movies. I want to hear how I make others feel. I want to hear that I am loved. I want to be thanked and I want to know that people are glad I’m around. I’m not looking for praise or popularity. I just want to feed the part of my soul that needs the comfort of feeling that I matter and that I have a purpose. If my soul’s yearning for a little uplifting and reassurance occasionally, I’m sure everyone’s is too. So I started with the three men in my life — my sons and my husband.

I know at any time, someone in our little family pod could die and should I go first, I don’t want them to wonder what they meant to me. I tell them I love them of course, but most of all, I hilight what it is I love about them, why I admire them, what makes me proud and why they are important — not just to me but to our community and to society. I believe that people, especially young people need to understand that they are important and that their existence is vital to the world. I think people need to hear that whether they are blessed with a long life or a concentrated one, what they think and do and what they bring to the table truly matters. The look on their faces as they process this information, the pause in the phone conversation after hearing these words allowed me to see and hear that my words have stirred up something positive within them. My younger son told me that the day I told him why he was important, they weight of the burden he was bearing became more tolerable. He told me knowing he was important made him feel stronger and more confident and he was able to say the same to others in his life. When I said the same thing to my older autistic son, he stared at me for what seemed like an eternity, smiled and hugged me and whispered “thank you Mom,”.

There are two songs that come to mind when I think of how necessary it is for us to un-busy ourselves so that we can connect with each other. I think of Five for Fighting’s 100 Years that reminds us that in the blink of an eye we are 15, 35 and 99 and I realize that if we don’t remember to say what we need to say when it matters, which is the essence of John Mayer’s, Say, we may go to our graves saying nothing at all. I don’t want that to happen to me so I make the time to reach out to that person who pops into my mind while I’m working or driving around. I try to plan some kind of outing for my group of girlfriends every two months or so and my bulletin board has post it notes to shoot person A or B a text to see how they are. I remember at the end of every staff email I send to thank them for bringing their unique talents to my autistic son’s life and remind them that we see and appreciate how much they do to enhance his life every day. These are the people who show up everyday to help my son and they do it not because they get paid, but because we give them the same love and kindness they show our son.

We can reverse drug use, depression, sadness, anxiety and suicide if we make the time to show love and kindness. A text, an email, a phone call or a face to face conversation brings as much joy to the giver as it does to the receiver. Mindfully chattting less about myself and finding out more about someone else lifts me up in ways material things cannot. Even people who begin a conversation by telling me they don’t have time, take a breath and slow their speech and they tell me the truth about how life’s been treating them. People need to talk. We need to listen. It’s important because they are important and life is short and they need to know while they are alive that they matter.

So I challenge you to realize you aren’t busier than anyone else. I challenge you to tell someone the things you would like someone to tell you…tell them something that you thing would lift them up and bring a smile to their face or give them that little confidence boost they might be looking for. If you do it once, I promise you you’ll do it for the rest of your life.

How We Prepared Our Child With Autism To Eat At A Restaurant.

One of the things that concerned us after our son Adam was diagnosed with autism, was what we would be able to do as a family — how we would incorporate him into the things we wanted to do while respecting and taking into consideration the things that were difficult for him to tollerate. I had always promised him we would do our best to meet him half way if he trusted us enough to do the same and I also promised him that we would show him how much fun things in our world could be and how much we wanted him to experience as much as he could with us by his side.

My husband and I made a list of all the things we wanted to do as a family, from simple things like going to the movies to more complicated things like going to amusement parks and concerts. Then we made a list of the things that seemed to be too difficult for him to handle and what behavior he used to communicate his discomfort to us. While we didn’t want to cause Adam any unnecessary stress, we couldn’t keep him in the house every day nor was it fair to his younger brother or us to just forgo having new experiences, creating new memories or introducing them to the things we loved to do.

The first thing on the list that we tried was going to a restaurant. We’d been to fast food restaurants occasionally and as Adam got older it was getting harder and harder for him to be there without crying, screeching, squirming his way down to the floor to lie on his side, or curl up under the table.

Adam 5, and Logan 3, — Lunch in Banff at Tony Roma’s with Mom and Dad

If we couldn’t handle being at a fast food restaurant with the noise and the lights and smells, how could we handle a sit down restaurant where we would have to wait longer for the meal to arrive? We aren’t fans of fast food eating and we thought the way to teach the kids how to be at a restaurant was to start with box-store chain restaurants where we could order something that was not wrapped in paper with greasy fries served in a paper holder. But how could we do this with Adam?

His support worker, his father and I, occasionally with the help of his little brother, Logan would mimic going to a restaurant in the playroom where they sat at the toddler table. I had a radio playing quietly in the background, I made simple picture enhanced, menus for Karen, our support worker (and impromptu waitress) to give to the boys and their dad, Tom, prepared the meals in our kitchen, rang a bell when the orders were up and Karen delivered them to the table.

Example of a simple PEC menu similar to the one I made when we mimicked going to a restaurant in the playroom.

We practiced and practiced “The Restaurant” game every day for about two months and still I was wasn’t certain it would go well. I wanted to set Adam and our family up for success so… I put my thinking cap back on and called our local Montana’s on Sarcee Trail in Calgary and asked to speak to the manager.

The place it all began — It’s been modernized but this is a photo of the Montana’s on Sarcee Trail in Calgary that helped make dining out as a family easy

I explained to her that we liked eating out once in a while and wanted to bring our family for a meal, however, we had a twist — we had to accommodate Adam’s autism so that we could not just eat out together but get him used to the atmosphere of the restaurant. She asked me what I had in mind and I told her that I was looking to eat during their quietest time of day. I told her that we would need a booth to seat him between my husband and myself, a booster seat for our other son Logan and I asked if we could pre-order our meal because Adam struggled with waiting.

I was fully prepared for her to tell me that she could not accommodate us — after all it was a busy restaurant of a popular chain and I was looking to have all this happen on the weekend. However, she was very kind and told me that it would be her honor to help us have this family experience. She sent a menu to our house and suggested we aim for the coming Saturday at two pm, since that was their quietest time. She told me she would turn off all the TV’s but the one at the bar that could not be seen from our booth and she would give us a designated waiter who would see to it that all our requests and needs were handled and that our order was ready to be served shortly after we arrived.

Just as I had asked, we had a booth and a booster seat. Adam and Logan were shown the menus and they pointed out what they wanted which was always the same — chicken tenders, fries and fruit and raw veggies on the side and it was brought to us within five minutes of us being seated. At that hour, there really was no noise in the restaurant and Adam was able to sit in his seat between Tom and me and eat his food, never once slithering all the way to the floor and trying to run away from the table. He never cried; never screamed. He ate, he coloured on the brownpaper “tablecloth” they spread on the table at Montana’s and just like our waiter, he learned to write his name upside down.

By the fourth or fifth month of us doing this, Beno, our designated waiter (who later became one of Adam’s support workers), worked with us to tweak the restaurant plan. We started going every other Saturday as usual but at one-thirty, then at one-fifteen, then one pm and worked our way to dining at noon. We introduced the restaurant ambient noise gradually, allowing Adam to listen to music wearing his ear buds whenever the noise got to be too much (something he still does at twenty-five). We increased colouring time by having the food come eight then ten minutes after we’d been seated and then pushed it to fifteen minutes and before we knew it, he was able to wait on the food to be prepared and then brought to the table. Adam learned to be in a restaurant setting so well, that our monthly visit to Montana’s became a twice monthly visit — one Saturday a month after swimming lessons and the other after dad came home from work on a Friday night.

Yes, that’s right, after eight months of learning to eat out at a restaurant, we were able to go out to Montana’s for a family dinner.

There were no more meltdowns, no more trying to lie on the floor or crawl away from the table — there was only sitting, eating, colouring, listening to music and even attempts at speaking.

Logan 10, and Adam 12 experiencing brain freeze at TGI Fridays in Niagra Falls, Ontario.

Our sons have long moved out of our home — yep, we are empty nesters now — and we occasionally go for dinner with one or both of them when their schedules permit. We go to all sorts of restaurants and sometimes, Adam, who has his favourite spots, will dine without his earbuds and will chat with us, while other times he’ll wear them and listen to music or watch a video on his phone to drown out the background noise.

What’s important is that he has learned to cope with the things that can be disturbing to him in public settings. He has learned what he can do or use to keep himself comfortable in public spaces. What’s beautiful, is that he is spending time with us and sharing a meal and sometimes I take his presence in a restaurant with us for granted, because it’s just an ordinary thing for him to do now.

Logan 17 and Adam 19, celebrating Adam’s birthday at one of his favourite restaurants — Chuck’s Roadhouse Belleville, Ontario

And when I do think about it, it seems like it was just yesterday that I’d call in our order and make our usual two-o’clock reservation, party of four. Who knew that our local Montana’s on Sarcee Trail in Calgary would be so accommodating and play such a significant part in preparing our son for what is to so many, just a meal at a restaurant.

But for our family, it was much more than that.

That kind gesture of a restaurant manager and a young waiter, not only taught Adam how to gradually adapt to a busy place like a restaurant, it gave us a chance to be a typical family, doing typical things and spending time together making memories. That gesture of kindness added so much to our family life but most of all, it helped shape Adam’s life and for that I will forever be grateful to the manager there in 2002–2003 and to Beno (who is probably forty years old now) wherever he may be. You changed our lives by helping us have typical family experiences and you helped shape Adam’s. And though I wish I could say it more eloquently — thank you. Thank you for giving us so much more than you could ever know.

The Good Parts

Writing and sharing the good parts

Hello. It has been a while since I have published. I recently returned to work….well, not recently, three years ago and I am loving my new “in-my-older-years” job.

My new job took off around the same time I thought I would work on writing a memoir based on my son’s autism. I was really serious too. I had a book coach and everything. I wrote fourteen complete chapters and was on my way to twenty-one when I decided it was making me too damn sad. I wanted to write a happy book and my coach said well you just can’t write the happy stuff without diving into the not so good and painful stuff and after outlining, drafting, editing and polishing foruteen chapters, I took some time to think about whether or not I should move forward and I took into consideration how heavy the burden of this memoir had become, I decided that I damn well could just write about the happier times. I didn’t have to re-live the dark days especially now that he is doing SO well. There is always gonna be something with my son that isn’t so pleasant but that does not mean we can’t share the good times we celebrate as a family.

Besides, I gathered up my courage and I got into commercial and bit-part movie acting and I am doing well. Like REALLY WELL! AND I LOVE IT! I have had fifty-seven jobs to date and I have only been at this for three years. (Not bad for a fifty-eight-year-old, huh?) I like making a living from my acting and I like that writing is my “unpaid-free-to-share-with-all” passion.

I am happy.

My God, for the first time in years I can truly say, I AM TRULY HAPPY.

My family is happy.

And, we are healthy.

So, I am going to share our state of happy while I am able.

And who knows…it may even help someone with their autistic son or daughter.

So, stay tuned for my account of the good things over the years with our precious, talented and beautiful son. I will try my best to post every Friday and if you are a parent of a child with autism or a guardian or support person etc., let me know if I have helped you in any way. It’s nice to get to know the community of like-souls, for what are we if we don’t support each other, right?

Till Friday my dear readers….

~D~

I’m Writing a Memoir. It’s Damn Hard but I’m Loving it!

It’s been a long time since I have posted anything. I’ve been busy since Spring 2022 getting to the things I’d put off for years. I have no excuse to put them off any longer.

No excuses

My husband and I work from home and our sons are grown and gone and are climbing the ladder of their lives. Apart from the occasional visit or video calls from the boys that feel like we are catching up with old friends, it’s really quiet around here and it’s easy to waste time. The time had come to stop talking about what I was planning to do and do it. It was time for me to write about our journey as a family living with an older child’s autism.

Taking Action

I did my research and hired a book coach. She helps me organize my thoughts and pulls the story out of me and expects me to meet my chapter deadlines.

I used to think I knew how to write.

Oh, was I wrong.

I am able to use language beautifully, but I don’t know how to write a book. But I am learning and as it comes together, I can imagine what it’s going to look like and how it’s going to feel when I get to hold it in my hands. I am also excited to share how we managed to get our boys to adulthood while living with Adam’s autism because just maybe, I could give hope to a young parent of a newly diagnosed child. If I could help just one parent see that their hard and bumpy journey doesn’t have to feel tragic all the time, my time spent going through the emotions of writing this book would have been well spent.

Sometimes DYI Isn’t The Best Way

Writing a book isn’t something just anyone can do.

I know we live in a world where tradition is shunned and the DYI option is the chosen path for almost everything. Today you can choose to renovate your home yourself, be your own real estate agent, financial advisor, car salesperson and publisher. We have taught ourselves to expect that everything can and should be done faster and all profits should be our own, but in my opinion, taking the slower route allows us to gain knowledge and develop patience.

In my opinion, utilizing other people’s connections and paying for their good service leads to the success I want to achieve, and by opting to pay for professional service, I am going to have a successful and powerful product that might provide help to someone else.

Success To Me = Freedom

I know I am not going to make millions selling my book but what I will do is get this story out of my mind and off my chest. Adam’s autism will never leave me but sharing it will give me a sense of freedom I have been seeking for as long as he has been alive — the freedom to proudly say to the world, it was difficult and I didn’t think our family was going to make it, but we did, especially Adam. It will give me the freedom to let him know how proud I am of him and that I love him exactly the way he is. Most of all, I am hopeful that our family’s story will be the one a young parent is hoping to find. The story I couldn’t find when Adam was little.

Trading Useless Distractions for Worthwhile Ones

Choosing to write a book, pushed me to look for something to distract me from the job of writing from time to time. Knowing I could not solely devote all my free time to the craft, I needed something other than exercise and crochet to spice up my life.

My husband enjoys cooking lately, so he has set about re-modeling our kitchen and I have completely released the cooking to his deft hands.

With the exception of Instagram, where I can stay connected one photo at a time with the goings-on of my sons, I decided to release social media. I had always found social media to be annoying, time-wasting distractions and ditching them was easy.

I got busy growing out my salt and pepper curls. I embraced my curvier fifty-something year-old body and found a talent agent around the same time I hired my book coach. Between last spring and now, somehow, I landed three commercials and a bit part in a TV movie which helps pay for my book coach and contributes to the fund that supports the cruising fetish my husband and I have developed.

The Ladder of Life

I hadn’t been on a film set since my early twenties when I occasionally worked in front but mostly behind the camera. What terrified me then, brings me great joy now, as I embrace it with womanly savvy, confidence and joy.

I don’t know how many roles will come my way. All I know, is that I’m having fun.

I don’t know when I will finish my book, but as long as I am alive, I will patiently see it through to the end.

When I was a young woman, I wanted everything to happen immediately. My mind was not mature enough to recognize the advantages of being patient. When I was young, I thought everything was running away from me. I know now, that everything isn’t for me but the things that feel right, are the things I am supposed to run toward.

I believe the rungs on the ladder of life have their golden moments but mostly, every rung is an opportunity to learn and grow as a person as we make our way to the top of our ladder (in spite of our aches and pains).

Some ladders of life are more concentrated than others, but for every ladder, the hardest point lies somewhere in the middle. If we allow ourselves to give and receive kindness and love … if we hold on tight and keep climbing, keep learning and dreaming, I believe the last rungs of the ladder of life will be the finest of all.