Happy Holidays: My Favorite Things for 2020

Young girl with Christmas tree opening a present

Do you often find yourself, at the end of each year, wondering, “how did this year go by so quickly?” We have many events that take place; birthdays, anniversaries, holidays, weddings, graduations and other special events. We live our busy lives with the months flying by until, poof, it’s over.

Well, 2020 would be the exception. This year seemed to last forever, filled with unprecedented and unexpected disruption and change for us all. Instead of wondering how did this year go by so quickly, I am wondering what the heck happened? I’m reflecting on so many ups and downs, unknowns and learning experiences. But, I also have found this to be a year that provided us with an opportunity to open our hearts to new ways of connecting. Our lives have slowed down, allowing us to be with our family, have more time to do the things we had forgotten we loved to do and appreciate the small gifts of each day.

One event I consistently look forward to each year during the holidays is “Oprah’s Favorite Things.” Back when she had her televised show, I loved watching her Holiday Favorite Things episode each year. Didn’t you? If I couldn’t watch in person, I made sure to record it, Oprah never disappointed. (Here’s her 2020 list).

I decided for this article to attempt, in my very humble and respectful way, to emulate her Holiday Favorites. So, here is my list of favorites for 2020:

#1 – Behaviors

Whaaaaat?? I know, a very bizarre thing to include as a favorite! But, if you think about it, how someone behaves tells us everything. Babies can’t verbally tell you what they need, but they show you with their behaviors. As parents, we learn the differences in their cries and come to understand when they are tired, hungry, playful or want to be comforted. I know our dog, Pebble, has a different bark to tell me what she wants! Behaviors are, in fact, a basic way to communicate.

In day-to-day neuro-typical life, so often people misunderstand behaviors of a person with ASD and view them as a form of disobeying or disruption. In reality, the behavior is most likely triggered by an environmental cause that the person can’t verbalize. The “disruptive” behavior is simply their way of communicating what they are feeling in response to their environment. Don’t beat yourself up if this is a new concept for you – or you have missed cues. Even the professionals struggle at times.

A speech pathologist shared with me a recent experience she had with one of her clients. While she had worked with this client for many years, because of COVID, she had not seen him for several months. In their first session back together, she was confused because he was unusually quiet and unresponsive. Although he is non-verbal, Pre-COVID, she could get him to participate, engage and perform tasks. In this current session, however, he was not engaging at all. Then he typed, “CAT.” At the time she presumed that the months-long lapse in therapy had cause such a setback, but was encouraged he was at least trying to communicate.  It wasn’t until later that day it dawned on her why he had typed “CAT.” She remembered that he is extremely frightened by cats. He cannot be anywhere near them. And, she recalled that when they were in the room working together, there was a cat sitting outside of the window. She had completely missed this behavior was his attempt to communicate his fear.

In educational settings, teachers with students on the Spectrum often view a behavior in insolation or as the problem. They will often default to suggesting a plan to curb the behavior, instead of asking why the behavior is occurring; what event triggered the behavior? This not a knock against teachers – I choose to see it as a teachable moment. It’s incumbent on us, as parents, to help teachers see behaviors through a different lens. When Maci was around 7, I was in a communication meeting with her school team to discuss how she was responding and coping in the classroom. I learned that she had developed a habit of crying and running away. Rather than see these behaviors in a negative light, I encouraged her team to look at the behaviors Maci was displaying as her way of communicating what she was experiencing. Her crying and need to escape/flee in the moment was her coping mechanism, a way of letting them know how she had anxiety or was uncomfortable in the situation. So, rather than develop a plan to squelch the behaviors, we worked to understand and alter her environment.                                                               

We all have trouble at times expressing ourselves, right? So, imagine how hard, challenging and frustrating it is for anyone non-verbal or low-verbal abilities to share their experiences. Understanding behaviors is essential to help us improve the quality of life for our non or low-verbal loved ones. And it’s why understanding behaviors is on my list of favorite things. It’s a gift that will benefit everyone.

A resource I recently found to help with behaviors are expression cards.  The expression cards are used to help people who are non-verbal and low-verbal share how they are feeling and what they wish to express. Here is the link for more information.

Autism Expression cards

#2 – Homemade organic applesauce

What’s not to love about applesauce? Homemade and organic makes it even better. I started making applesauce for Maci when she was 9 months old. It started as a way to help her eat healthy and nutritious food. Homemade and organic keeps it free from added preservatives and unnecessary sugar. As Maci got older, in addition to the nutritional value, it became a mechanism for administering medications and supplements. She couldn’t swallow pills so I would dump the pills or mash them into her food. Yogurt and smoothies are good foods for adding in additional supplements too, however, many yogurts have a lot of sugar and added preservatives. I tried making yogurt at home, but if you try it, be aware that it takes a long time to finish and is a little labor intensive. So, I switched to solely making applesauce. I make a variety with butternut squash, strawberry, blueberry and banana. It’s quick, easy, super healthy and great substitute to yogurt.

Here’s my very own recipe – totally sugar-free – to get you started.

#3 – HearthSong

This is one of my super favorite sites for all things kid. I found this site, HearthSong, several years ago and it has become my “go to” for birthdays, holidays and general gift giving. They have great activities for  kids, inside and outdoors. It’s especially wonderful for kids with sensory needs. For children with ASD, swing therapy is often used a source of comfort as well as to improve balance and coordination. HearthSong has a variety of swings for this purpose. I got one for Maci a few years ago and it has been fantastic. It’s held up extremely well given the hours of use, and it’s proven to be durable and fun. Maci has also enjoyed tents, trampolines and building boards for forts.

#4 – Lindamood Bell Learning Centers

Lindamood-Bell is another big favorite of mine and Maci’s, especially this year with COVID, as school is shut down and learning is remote. I’m sure you are concerned your children are falling behind during this time. It is something that weighs on every parent these days. Yet, for a parent with a child who is already very far behind, falling even more behind is really hard and even scary. Lindamood-Bell is a learning resource center providing individual programs to help kids of all abilities. Even pre-COVID, we incorporated Lindamood-Bell into Maci’s schedule off and on over the last 4 years. It is a fabulous way to help supplement learning and education.

#5 – PTA Reflections Art Contest

Every year, the National PTA hosts the Reflections Art Contest in each state and at every school with a PTA. The contest is a way that K-12 children can use different modes of art to express their talent and abilities. Each year has a theme for the art and a child creates an “expression” to describe their project.  I learned about the contest a few years ago, when Maci was 7. I had been looking for ways Maci could participate with her peers in school programs, such as sports and a variety of after school clubs. I was finding it a challenge.

When I heard about the Reflections Art Contest, I felt this might be something she could participate in. Maci loves to take photos on my phone and, honestly, I think they are pretty good. So, I helped Maci find a photo and write the expression. We mounted the photo and submitted it in the photography: special artist category. Besides being fun and a great activity to do together, her photo ended up winning 4 levels up to the state level and placed 3rd overall in the state! Each time she won, she was presented an award in front of all of her peers. As a mother, it was truly special to see her recognized for her achievement. We have entered her photo again for this year, with the theme of “I matter because…” Here is Maci’s submission:

Rock photo submitted by Maci Cuthill
Maci’s 2020 Reflections Submission

Maci’s Photo Expression:

“My  name  is  Maci  and  I  have  given  my  mom  permission  to  write  my  statement  for  me.

 I  am  my own person  and  I  matter  because  even  though  I  am  different  and  I  experience  the  world  around  me  different,  I  am  still  strong,  confident,  and  see  the  good  in  all  things  and  people. I  love  taking  pictures  and  chose  to  submit  this  for  the  Reflections  Art  Contest  because  I  think  it  speaks  to  the  theme  “I  matter  because.”  I  love  rocks  and  I  think  they  represent  strength  and confidence.  Having  a  disability  is  really  hard.  People  see  me  differently,  but  I’m  not.  I  matter  because  I  am  the  same.  I  feel  the  same,  share  the  same,  and  love  the  same.  My  entry  photo was  taken  on  the  beach  at  my  grandparents  house,  which  is  a  special  place  for  me.  It’s  a  retreat  that  I  find  very  peaceful.  My  entry  photo  allows  me  to  share  one  of  the  places  I  love  so  much.”

– Maci Cuthill, age 15

I encourage you to look back on this crazy year and reflect on your favorite things. It’s been good therapy for me and I hope my Favorite Things will be fun and helpful for you. You can always find these and more of my favorite things on maciandpebble.com and I’d love to have you join our MAP – Navigate Autism Together Facebook group where you can ask questions and get answers from a caring and supportive collection of caregivers – as well as share your favorite things. Wishing you all a Happy Holiday Season! Enjoy each day and remember to #MAPit when you need information and resources.

Marikay Cuthill is mother of Maci, a vibrant, curious 15-year-old on the Autism Spectrum, and the founder of Maci And Pebble, a community dedicated to helping people navigate autism by finding answers, direction and peace of mind. Learn more at www.maciandpebble.com

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Looking back, feeling grateful, letting go…

The beginning of this year seems like 11 years ago rather than 11 months ago. For you too? Looking back, I’m awestruck at the roller coaster of emotions and ever-changing events we encountered as the months progressed. 2020 has truly been a year unlike no other.

In January, I blogged about how I wanted to just “be” this year; taking one day at a time, one week at a time and one month at a time. I wanted to just “be” calm, mindful, hopeful, blessed or whatever the moment and feeling presented. Now, here we are in November, almost at the end of this year. Those desires I had at the beginning of the year manifested themselves in so many different ways. Did I always succeed at “being?” Probably not. But, I am welcoming November. It is always one of my favorite months of the year with Thanksgiving and the opportunity to be grateful and thankful. So this year, even though we are still dealing with all the challenges of COVID, the unknowns and shut downs, I continue to be grateful and be thankful.

I have had a lot of time to reflect this year. I think back to when I first considered starting my website, blog and newsletter back some 7 years ago. I wanted to create a simple and easy way to bring the ASD community together. From my own experience, I knew navigating and finding information and resources was a challenge, often time consuming and expensive. And so while I knew I had a wealth of knowledge to share, I had moments of doubt about the effort and time commitment. I had so much going on with Maci. Could I really commit to building a community?

As I struggled with my decision, I recalled the time we had Maci scheduled for a colonoscopy.  We can all agree that procedure is no fun for anyone, so it was not something I was looking forward to.  But, Maci was having with her gastrointestinal system and we needed to rule out a number of things. The procedure went well and I sat with her in the recovery room while waiting for her to wake up.

I remember the nurse with her was very kind and we started making small talk. She asked me about Maci – she knew about her ASD diagnosis as it was in her chart.  The nurse told me about a little boy who lived next door. She thought he was probably Autistic but had not been assessed or given a diagnosis. His mother was a single mom, working and struggling to get by with a son who was having many challenges. I was struck by this caring woman, trying to help them and do what she could. She asked me several questions and seemed to be so interested in what we were doing with Maci. She asked how she could find more information. Instinctively, I started to write down names, organizations and give her the information and resources I hoped would help. I remember thinking in that moment, that I wished I had a website that I could refer her to. Some place I trusted to have great information and resources, that was easy to access and wasn’t cost prohibitive.

In that doubtful period seven years ago, I thought about all the people who had helped us on our journey with Maci. I was so grateful for the information and referrals we got from so many people we met. Had I not met the people I did, and had they not shared the information they did, we would not be where we are today. Again, so grateful and thankful. I knew what I had to do. I let go of my doubts. I focused on what I needed to do. 

I could list many other situations and experiences brought me to the place of creating MAP – maciandpebble.com. I am happy with how MAP has grown to include valuable information and resources. But, my dream is for MAP to become a place for people to share their information – an interactive site. I started by sharing and talking about our information and experiences.  As the site develops, it is my desire and great hope is others will begin to share too. 

Through MAP, we can bring new opportunities, hope and togetherness in navigating this journey. Maybe one of the bright takeaways from COVID is the realization that we are all in this together.  Whether you have a loved one with ASD, work with those who do or know people who do. ASD touches all of our lives. 

Please use MAP as the vehicle for you, your loved ones, your community to get answers and peace of mind in coping with ASD. Whenever anyone says how do I find ASD information?  Answer, MAP it. How do I find ASD resources in my community? Answer, MAP it.  How did you know what doctor was the right one for your loved one with ASD? Answer, MAP it. 

And share with us. Send me an email sharing your resources and experiences. Join our Facebook group to interact with others navigating the spectrum. Become a part of the MAP community by subscribing to our newsletter and following us on social media: Facebook, Twitter, Pinterest.

We are stronger together. We can face challenges and improve our quality of life if we share. Please join me.

Marikay Cuthill is mother of Maci, a vibrant, curious 15-year-old on the Autism Spectrum, and the founder of Maci And Pebble, a community dedicated to helping people navigate autism by finding answers, direction and peace of mind. Learn more at www.maciandpebble.com

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