The Lesson….

Written January 09, 2022 while in hospital with Stalen

Today Stalen and I made our way over to the big window in his hospital room. I sat on the bed and he leaned up against me. As we looked outside we could see children with their families sliding in a field nearby. They were having so much fun!

As I looked down at Stalen leaning on me to help him sit up, I saw his bandages from surgery and his ileostomy bag. I thought how different our lives are from those outside running, chatting and sliding.

It didn’t make me sad…not one bit.

In the past, I probably would have been teary eyed and wished so many different things for us in that moment.

Stalen has shown us that he can do absolutely anything that he wants to. Even if it seems impossible, he will find his way to get it done. You see just because my son is autistic, doesn’t mean he should live a restricted life.

Life really is what you make it, and we are determined to make Stalen’s great. A life of love, fun, successes, kindness, purpose, acceptance and adventure.

I know that our life is different from many others, and I’m at peace with that because I know that a life lived differently, is not a life less lived. That’s one of the greatest lessons that my smiley, blue eyed boy continues to teach me over and over.

It’s been a challenging time…

On January 7th 2022 Stalen had his ileostomy surgery. He was in surgery for 3.5 hours. He did amazing afterwards. He was up walking a few hours after surgery and was smiling and his usual self.

We were released from the hospital on January 10th. We arrived home from the childrens hospital in a Nova Scotia on Jan. 11

Things seemed to be going well. We had a great day and we were happy to be home. In the early morning hours of January 12, I knew that something was wrong and I rushed Stalen to our local hospital. He had some sort of bowel obstruction. They tried to life flight is back to the childrens hospital but it was storming and the plane could not land. So, they took us by ambulance. We left at 1:15pm and arrived at 7:40pm. It was the longest ride of my life.

Stalen started showing signs of an infection so he had to be treated for that. On January 16, Stalen went back to the OR for a stoma revision.

Things are working much better and we have been home for over a month. It’s been a challenging time with the complications and now adjusting to the daily care and maintenance of an ostomy.

Stalen is amazing!!!

Happy New Year!!!

I was going to write something positive and inspiring about 2021…but let’s be honest…yes there were good times and memories made but 2021 was hard and tiring.

For me, it was the year that I’ve probably advocated the hardest for my son. It was also an eye opening year to see how individuals with disabilities have been treated amidst the pandemic and to clearly see the flaws and injustices in many of our systems.

In 2022, I’m hoping to do more and better. I have several advocacy projects that I would like to bring to fruition. I also hope to write more which includes considering writing a book.

I have so many hopes for my sweet boy in 2022. Of course, better health for him is at the top of my list.

I wish I could say that 2022 will be amazing but who knows what the year has in store for us. Instead, I hope that everyone finds peace with whatever they are dealing with, with whatever worries and challenges lay ahead and wherever they are in their own personal journeys. That we all make the year the best it can be despite what comes our way.

Thank you for your friendship and support in the past and we look forward to continuing to share Stalen’s story and smile in 2022.

Different is Everything!

I was born and raised in the 80s. It was a time of big hair, mix tapes, the Walkman and neon colors. We didn’t hear about autism or inclusion back then. In the small rural high school that I attended, individuals with different or special needs were grouped together in a separate classroom. Our exposure was limited, no one taught us about accepting and celebrating differences. Throughout history and even today, many attitudes still exist that fear those that are considered different.

My experience with individuals with special needs was minimal until my son was born in 2015. I gave birth to a beautiful baby boy, with big blue eyes and a full head of hair. Within the first year of his life, we noticed some concerning behavior and a major regression in language. My son was diagnosed on the autism spectrum when he was 21 months old. Today he is 6 years old, non-verbal and has some comorbid conditions like seizures and gastrointestinal challenges.

There is so much emphasis on fitting in and being accepted, the pressure to be like everyone else overshadows the underlying true beauty of being different.

My son sees the simplicity and beauty in everything. He loves the feel of the wind against his face, how he can make his shadow dance in the sunlight, and gentle squeezes when holding hands. He loves the texture of rocks, to run his fingers along the wall as he walks and to twirl with excitement when he realizes it’s the weekend.

He is all love. While he understands body language and words of others, he doesn’t acknowledge unkind words, judgements or when someone is mean to him. His response to such acts is to smile. One of the most beautiful things is that he only knows love. Sometimes I wonder in awe what the world would be like if we all only knew love, if we never allowed negativity and toxicity to taint our happiness, self-worth, or our relationships with others.

I’m not quite sure how he does it, but he lives every day with a grateful heart. He appreciates all life has to offer him, and that offering is enough for him, regardless of the opportunities life has offered to others. He expresses his gratitude with squeals of delight, eyes as wide as saucers, and a smile that is so bright it puts the sun to shame. This boy of mine was dealt so many challenges, yet he finds the joy in every single day. Despite being non-verbal, he uses an iPad with special software to communicate. His specialty is not asking for his own wants and needs but instead trying to make others smile.

When you spend time with someone who is different than you, it creates an insatiable thirst, a curiosity about how they see the world and how that compares to your view.

My autistic son likes to enhance authenticity by stealing quiet moments like holding your hand and sharing space. He makes everyone feel seen not with his eyes but with his heart. He is energized by that connection forged between his heart and yours. When you spend time with him and you bask in the quiet moments of love, being present and feeling that unspoken connection, renewed optimisms creeps in and you always want more. It revitalizes you so you can go out into the world and do better.

He paints the world with a palette of rich, vibrant colors.

I know that sometimes people feel sorry for me because my son is autistic. But they have no idea how much I have won. I’m so fortunate to have moments of so much love, connection, and quiet moments daily that so many others may wish for. These moments that I get to experience so often, are the reasons that so many others take vacations to escape from the hustle and bustle of everyday life, to recharge and reunite with more meaningful connections.

For most people, parenting is preparing to send your children out into the world so they can pursue dreams and be successful and happy. I’m not certain what the future will look like for us. I’m focusing on raising my autistic son to be independent, to be able to take care of himself as much as possible so he can one day exist in a world without me. I will probably never retire as a mother; my son has made me a forever one.

When others are facing the challenge of sending their son/daughter off to university or college, I will probably be holding my son’s hand helping him to navigate a busy parking lot and assisting him to shave at the bathroom sink. When he is an adult, we will probably watch kids shows and sing nursery songs, do all the things that he loves.

A life lived differently, is not a life less lived. There is no formula for a life well-lived. But I think my son is on to something with how he lives each day with love, gratitude, and purpose. He is not like anyone else. He uses his ability to find and create beauty, shine it onto others and set them out into the world better and brighter than they were before they met him.

Different isn’t just beautiful, in my world it is everything!

The Naysayers

To the naysayers, 

Yes the naysayers! We all know them. Those people who question everything about our parenting, our child’s diagnosis and everything in between. 

Those people who think our children lack discipline, those people who think they could get my child to eat a regular meal for supper…those people we know that are the furthest away from acceptance because they can’t even fathom the diagnosis. Those people in denial limbo, who could never understand his struggles…because they just can’t or they may not want to. 

The naysayers. The ones who have all the answers, yet have no experience raising an autistic child. 

The naysayers. The ones who have convinced themselves that my child is not autistic, despite his diagnosis. The people who think that my child doesn’t speak, because I haven’t done enough to help him speak. Those people who think that he doesn’t eat because I let him eat what he wants. The people who think his speech device that he uses to communicate, his voice, is too much screen time. 

The naysayers. The self proclaimed judge and jury. The list of crimes that they have already convicted me of is long, inaccurate and draining. 

To them I say this….. 

I have done everything humanly possible for my son, always in the best interest of his needs. My entire world revolves around him, his needs, his care, his progress, his health, his happiness and his education. His has always been my priority since day one. The reality is that Stalen has a lifelong neurological condition. Critiques and opinions will not change that. 

I am confident that I’m doing my very best for him every day and will continue to do so. We have many struggles but we also have so much love. Stalen is a very happy little boy, and he knows that he is loved and accepted exactly as he is by his Mom and Dad. 

I feel sad for the naysayers. They will never truly see Stalen, his limitless potential, or accept my amazing son because they are standing in their own way of that. They are blinded by their own preconceived conclusions  and can’t focus on the beautiful boy that would bless their lives and bring them so much joy. 

Everyone is on their own journey, and moving towards acceptance at their own pace. Unfortunately, assumptions and judgements only serve as roadblocks, placing unnecessary distance between where you are and where you want to be. 

The naysayers and I are many worlds apart. 

I have no time or energy for them. It is not necessary for me to defend myself or my choices for Stalen. Life is too short and we are busy making memories and living our best life. 

After all, everyone believes in what they want too. I choose to believe in my son, myself and the power of us. 

AAC Tips

I often get asked how Stalen is so good with his AAC device. We have worked so so hard. Here are some of the factors that had contributed to his success:

It’s very important to me so I’m always researching and working towards goals. I also am firm on these basic premises and have no problem shouting from the rooftops to everyone that his AAC goes wherever he goes, that it is his voice and under no circumstances should it be taken away or used as a punishment.

We follow a core word strategy. Stalen is introduced to and practices a new word about every 9 days. We started with words like stop, go, yes, no, more.

Vocabulary. We review and practice using vocabulary words for special occasions and seasons.

Modeling. I model every day. It is probably the strategy that has been the hardest to implement but so beneficial. Modeling means I use the iPad to talk to Stalen. It allows him to see what it looks like to communicate using the AAC device in real conversations. For me it was awkward at first but I set daily and weekly goals for myself and the more I used it the more comfortable I became with it.

Stalen loves technology. He is a scrolling maniac and we watch him go in awe. He texts, uses google maps, tries to purchase apps., can find anything on YouTube. He develops and works on his own skills that enable him to be quick on his device. This has served us so well.

SLP. We have consulted with an SLP on an ongoing basis to keep furthering Stalen’s proficiency with his AAC and we use his device in collaboration with other speech acquisition and development strategies. I also follow many apraxia strategies at home.

Usage. The more ways that you can incorporate the AAC into your daily life the better. Stalen uses his to request things but we also use it to make comments, play games, tell jokes, for arts & crafts and to read books. One of his favorite activities is painting and he loves to choose his paint colors on his AAC.

The Pretenders

We have all met a “pretender”. You know those people who act like they are okay with and accepting of autism. That is until you bring your autistic child around them. The first time that your child gets too loud, flaps too much, they start doing repetitive behaviours, or have a meltdown..you see that the person is not accepting or understanding of autism at all. The acceptance that you thought they had quickly turns to awkward uncomfortableness. They don’t say anything because they don’t have to. You see it. You feel it and so does your child. It’s written all over their face and in their body language. It hurts…when someone is not what you thought they were, especially when it comes to your child.

Sometimes people see differences and they don’t know how to deal. They forget that we are all the same on the inside and require the same things to thrive like love, relationships, and a sense of belonging. Instead they become scared and unkind. This fear may cause them to reject your loved one (and you), perhaps not outright, but in their own way-avoidance, hurtful comments, lack of contact with you, excuses, no more visits or invites.

The pretenders may also make excuses that seem like they are acting in your child’s best interest…..maybe it will be too loud or busy here for today. Last time I didn’t think that _____liked visiting my house. I don’t want to upset __ so I won’t be stopping by.

You can avoid being a pretender by being honest, asking questions and educating yourself about autism. It’s about a willingness to learn and put forth an effort to understand autism, focus on the individual and how autism effects them, and find ways to connect with them. If you have never been around an autistic person and are unsure what to expect or do…ask…..parents are a great resource and we could talk all day about our kids. I love telling people about Stalen and his interests and tips on how to have meaningful interactions with him.

Pretenders miss out on really amazing people. Autistic people are not a burden and they certainly aren’t someone to be embarrassed of, or to avoid being around. The real burden is pretending to be someone or something that you are not.