A Letter to Her

Please note: The incident described below is true and happened shortly after my son received his Autism diagnosis. Two years later and it still haunts me!

Dear Grocery Store Lady,

It wasn’t a pleasure to meet you today at the grocery store. When I arrived home I was in tears and spent the rest of the day thinking about the unfortunate encounter that I had with you. Even though I knew it was wrong, I even day dreamed about smashing you in the face with a family size box of shredded wheat or a can of red kidney beans.

Your immaturity today left a disgusting and sour taste in my mouth. In 5 minutes, your malicious behavior tarnished the good that I saw in the world. I don’t think I have ever been so angry in my entire life. My heart hurt to know that such blatant evil and discrimination towards a child exists in the world. My heart literally broke when it was intentionally directed towards my son, right before my very eyes.

The store was so busy-the bright lights, the hustle and bustle of shoppers and the rickety scratchy sound of shopping carts with one bad seized wheel. I saw you a couple of times in a few aisles, but I didn’t really notice you until that moment in the cereal aisle.

It was in that aisle that you decided to cross me. As I grabbed something from the coolers, my beautiful baby boy sat stimming in the shopping cart with his arms flapping and body rocking-he was moving fast and furious. By this time in our trip he was trying to make sense of the world with everything that was going on around him. The sights and sounds were just too much for him. He was coping the only way he knew how.

It was at that moment that you approached him. You decided that you should single out my 2 year old non-verbal son on the autism spectrum and laugh at him, loudly make remarks to others about his stimming which you referred to as “spazzing” and how hilarious his rapid body movements were as he desperately tried to cope. I had never met a middle aged woman who tried to bully a child in the grocery store before until today. Bravo lady! *insert disgusted sarcasm here*

I hope that my anger taught you a lesson in spite of your ignorance. I hope that you never approach another child ever again. I hope that you think through every action and comment before you act. I hope you realized in that moment how lucky you are that I allowed you to walk away.

The sweet boy that you attempted to make fun of because he is different, loves everyone. Yes, even a cold hearted bully like you. He is so full of heart and love that he would accept you even after what you did to him. The sad part was that he didn’t realize that you were in his personal space making fun of him.

It’s unfortunate that you were to busy to notice his beautiful eyes. You don’t know that he is gentle and kind. That he loves music and being silly. He loves turning pages of books, popping bubbles and nursery rhymes. You didn’t think that he is a human being and has feelings? He also has people who love and protect him. But, I think you quickly realized that during our exchange.

Thank you for teaching me a valuable lesson in self restraint. (Luckily for you, this was in the early days before sleep deprivation had set in). My words may have been harsh but my actions could of been much more volatile that day.

Thank you for checking my naivety and reminding me that ugly unkind people exist. I know that we will encounter others like you and I know that we will be okay and stronger because of it.

Thank you for reminding me that education and awareness of disabilities is so needed and for fueling my advocacy.

Thank you for reminding me to teach my son and others about love, kindness, understanding and acceptance. I will always appreciate and compliment these qualities in others. More importantly, I will try to model these qualities for my son.

Thank you for reminding me how it feels to be hurt and angry but to choose to see the positive in every day and every situation.

I am no longer angry but saddened by the whole exchange. I am saddened to think of what you must have been going through in your world to warrant such ugliness towards an innocent child. I hope that you have found peace.

I will remember all the valuable lessons and reminders you taught me that day. I wish that I had learned them in another way. I will always remember the dress you were wearing and your face laughing at my son.

I only hope that when you come face to face with karma that she shows you the same consideration and acceptance that you bestowed to my son that day in the cereal aisle.

~Stalen’s Mom

When No One Listens…

One of the hardest and most frustrating thing is when your trying to communicate and no one listens. This is especially true if your using your voice to advocate for your child. I think every parent can relate. Whether your seeking a diagnosis, a treatment plan, dealing with a teacher, a doctor, a family member or friend. When your trying to send a message about something that is going on with your child and the receiver is just not getting it.

As a special needs parent it feels like we are always advocating for our children. When one need is met another arises, when one fire is put out another starts blazing-it never ends. We will encounter many people who do not listen to us throughout our lives as we advocate for our kids.

My son was diagnosed on the spectrum at 21 months. He is now 4. I feel like I am constantly fighting someone for him. I had to fight from the very beginning for a diagnosis. I have been fighting since May 2018 for a medical diagnosis for his bowel and digestive problems. I recently took S to the doctor, requested a second medical opinion, a referral to a children’s hospital in another province and a new pediatrician. As parents we need to remember that we have the right to ask questions and voice our concerns for our children. A doctor only sees a small snapshot 10-15 mins of our children when we are at an appointment.

WE know our children best.

When we have a high priority unmet need I like to have my ducks in a row before I go in for the ask. I am also a planner-a list maker and over thinker. I don’t like to be unprepared. I always write out the facts-what happened and what do we need? I write notes in my phone and use these notes to guide the appointment.

Sometimes no matter what we say, no matter how hard we try we just can’t get the message across. When this occurs, you may have to take a step back and re-think your plan of attack. One time S had a cold and wouldn’t eat food for 16 days, he was frail and dropping weight. It was a very concerning and stressful time. I continually offered him food and left it set out. I didn’t believe that he would just eat when he was hungry. After 16 days, he was surely hungry and still not eating. I had to enlist the help of a team of professionals (occupational therapist, child psychologist, a pediatric feeding expert in the US) along with our regular team.

YOU are the best advocate for your child. As parents, we have a right to ask questions. We have the right to ask for services, therapies, medical tests. Uncomfortable conversations are necessary for progress.

When no one listens… Be strong, remember who you are fighting for.

There was a time when I worried about what people thought of my advocating style.

I knew I was THAT Mom. But, I don’t worry about that anymore. I am exactly the Mom that Stalen needs. I always ensure I am respectful and ask for what my son needs. I keep asking, calling, making appointments, sending emails, recruiting other professionals to advocate for and with us. Remember the person that your dealing with would do the exact same thing for their child if they were in your situation.

My son deserves to have an amazing quality of life.

He is everything to me.

He is worth it.

Can you do something for me?

All the time I am asked by friends and family if they can do anything for me..if they can do anything to help with Stalen….and if we need anything. Thank you for asking we appreciate it. Each and every time I have been asked I have politely declined because I didn’t know how anyone could help us. Until today…

If you want to truly help us, if you could do one thing for Stalen and I to help us as we navigate on this journey with Autism…then this is it.

Please have a conversation with your children about Autism and kindness. If you do not have children then maybe a niece or nephew or encourage a friend to talk to their children about Autism. Please pass along the message that we need to start having REAL conversations about Autism. I’m asking because it is necessary and important and it would mean the world to me and so many others.

We need to do better.

1 in 66 Canadian children are being diagnosed on the Autism Spectrum. I guarantee at some time in their lives your children will encounter someone with Autism…maybe someone will be in their class at school? Maybe they will see a child stimming at a local playground or maybe they will wave or smile at a child in a store that does not wave or smile back. They may even know someone already but not quite understand what it is.

You do not need to be an expert on Autism and it’s okay if you are not sure where to start. I think the best approach is to explain that some people have Autism and their brains are wired differently. Talk about some of those differences that they may see like they may not be able to talk, they may flap their arms, they may repeat noises or actions over and over. No two people with Autism are the same so they may not see anything. Autism is an invisible disability. Be sure to focus on abilities-he may not be able to talk but he loves ice cream just like you. Be sure they know to speak directly to an autistic child, even if he/she is nonverbal. 

He may not be able to talk but he loves ice cream just like you

Stress the importance of being kind to EVERYONE. Please talk about how it’s important to be kind and a friend to everyone and how you feel when someone is mean. It may be helpful if you ask them about when someone was mean to them and how it made them feel and encourage them to be kind to everyone and never make someone else feel like that. You may even want to share a time when someone was mean to you.

If your child is a visual learner then you could introduce them to Julia from Sesame Street by clicking here.

Mom friends…teacher friends…..anyone reading this.

I would be happy to answer any questions you have about Autism. There are no wrong questions.

If you need resources to understand and learn about Autism, I will help you find them.

I would be happy to talk to others of any age about Autism and share our story.

Please reach out.

A Supper to Remember…

Today, we decided to go to a restaurant and have supper. We think it’s been about two years since we went to a restaurant with Stalen and sat down and ate. The last time we went he was two and I had to take him and leave before the food arrived. It was too much for him-the noise, the people, the smells of so many different foods, and the unfamiliarity of the place. It was also too much for me-hungry and carrying a kicking, screaming, crying child from a restaurant while everyone stared and the disappointment that I couldn’t enjoy the meal with the rest of my family.

Over the last two years, we have had so many challenges both autism and medically related for S that we hadn’t thought or discussed going to a restaurant. It was just an unspoken agreement that both he and us weren’t ready.

Stalen is getting older. He had an amazing week. He deserves to go to restaurants and so do we. I am tired of Autism. I am tired of the last two plus isolating years that I have lived. I am slowly reclaiming my peace and my self from Autism. It has taken too much from us and I can’t allow it take one more minuscule from me and my son.

I am soooooo done with it!!

In the next few months we are making some big changes. We are leaving our isolated and very private home in the country and moving to a new house in a residential neighborhood. Stalen is starting preschool in September and will be going 3 mornings a week. I am excited for us both! I am nervous and happy but know that this will all be worth it. These changes will be good for everyone.

We were nervous when we arrived at the restaurant. I felt anxious in not knowing how it was going to go but I knew he has come so far, we deserved to try. He deserved the opportunity to show us the real progress that he has made. I was armed with the Ipad with his favorite songs and a purse stuffed to the brim with snacks and a bottle of water. Our waitress was great and I briefly explained the situation. I wanted her to be prepared in case Stalen had a meltdown or we quickly had to exit or request our food to go. She was super nice and understanding. Stalen was very anxious, he stimmed and screeched a couple of times. He was so overstimulated from the environment that I had to put the Ipad away. Our food arrived very quickly. He stimmed and ate a lot of snacks. I had to only give him small pieces because he was so anxious and stuffing his mouth. A couple of times he grabbed my arms and put them around himself. He needed my familiarity and comfort in this new place. But, all in all-he did amazing. I was able to eat my food and stay for the duration of the meal and compared to last time-that’s a huge win.

As soon as I finished eating, I took Stalen and left. I knew we were pushing our luck and he was exhausted from the experience. The waitress told my husband that she had put in a special request that our food be prepared quickly for us so we wouldn’t have to wait long.

When we arrived home, he cried on and off for about 30 minutes. I think that was his way of coping with what had just happened.

I am happy that it was a good experience. We know in the future it is not something that we will do all the time but every once in a while or a special occasion we can go to a restaurant and see how it goes.

I am so proud of my boy. He never ceases to amaze me.

Our first restaurant outing in two years.

The Big Elephant in the Room

Recently, Stalen and I were getting groceries. The cashier was super nice and began talking to me as she scanned our stuff. She also tried to strike up a conversation with Stalen. When he didn’t respond to her she asked me if he was shy. I quickly told her that he has autism and is non-verbal. She asked, “will he ever talk”? I felt myself cringe and I could feel the lady in line behind me leaning in. It wasn’t the question that bothered me, it was the answer. How do you tell a complete stranger that you don’t know if the little boy smiling in front of her, the little boy that you love more than anything in the entire world, will ever find his words. There’s a real sadness in not knowing and an even stronger sadness in the possibility that language may never come.

I told the cashier, “I sure hope so but we just don’t know. I believe it will happen”. No matter how many times the question is asked, it doesn’t get easier. It is a reminder of the big elephant in the room-my son is non-verbal. He doesn’t communicate and has no words.

The big elephant follows me everywhere I go. It is at the grocery store, the bank and the post office. It is at the swimming pool, the playground and the park. It comes up at baby showers, family dinners, holidays and special occasions. It weighs heavily on my mind every day and every night when I’m trying to fall asleep. I can’t blame people for being curious and asking. Before I had my son, I did not know anyone or had never met anyone that was non-verbal. If I had I would have been curious as well.

Stalen is 4 years old and has at best two words (Mom and Dada) and neither are consistent. He might say Mom 3 times in one day and then never again for a week or a month. He cannot respond to questions and he does not point. We have one year left to work hard on communication before he is scheduled to begin school.

I have no idea if my son will ever talk. The experts and professionals do not know either. Trust me, I have asked…over and over and over! It is as unknown as the weather. We won’t know if he will ever talk, until he talks. We have had tests performed. It has been confirmed that nothing physical is preventing S from verbally communicating. His brain just isn’t cooperating and it kills me.

But….

I AM SO HOPEFUL.

I believe that my son will talk. His little voice will be amazing and his curiosity will shine as he asks me questions about everything. “Why Mama?” We will sing horribly and loudly in the car and he will tell me silly jokes and riddles. I dream about him finding his voice weekly. It is a beautiful, amazing, dream every time and it enables me to hang on a little longer.

When you love some one so deeply, you never lose faith. You never stop believing.

I can’t wait for my dream to come true and I can share it with all of you.

Until then, we will keep hoping and believing-trying and pushing forward.

HOPE ON.

JOURNEY ON.

Another complication…

It’s amazing to me how Stalen has such a high threshold to pain and his reaction to it. It is also very scary. We have become regulars in the Emergency Room because of it-but sometimes you just need that peace of mind.

At first his reaction to pain didn’t stand out to me. When he got his baby vaccinations he didn’t cry but he had quite chubby baby legs so I just assumed that he had some cushioning and didn’t feel it.

In April of last year, Stalen ran into the corner of a wall and split his forehead. He cried at first, there was a lot of blood, but the crying didn’t last long. He didn’t cry at the hospital nor when they glued his forehead together. I was quite impressed!

Happy boy waiting to get his forehead glued.

In June 2018, he was hospitalized twice and needed bloodwork. He didn’t even flinch. He cried when they touched him with gauze afterwards but not during the process of collecting the blood.

When he was admitted to the hospital the second time in June he needed an IV. He was extremely dehydrated and the nurses had a really hard time finding a vein. They were expecting quite a fight from him. They tried 5 times and were finally successful on the 6th. He again did not cry.

It slowly got harder and harder to ignore.

One day when I was mopping. He touched the steam mop with his foot and it burned the side of his foot. He did not make a sound. It was as if it didn’t happen. The burn resulted in a blister but no reaction from him.

The most profound experience was in September 2018. I put a pair of socks on Stalen and when I turned my back to grab my purse he bolted and fell on the hardwood floor. It seemed like a typical fall, his feet had gone out from underneath him. He cried quite a bit. He doesn’t cry a lot so the fact that he cried was an indication that he was injured. He favored his arm and cried for about 30 minutes-this is substantial for him. I quickly packed up and headed to the emergency room.

After we went through the registration process we sat in the busy waiting area right near the entrance. The automatic doors were opening and closing a lot. I glanced at S and he was having a nap. I couldn’t believe it. We are lucky if he sleeps 4-6 hours a night at home. His room must be complete darkness. I’m not even kidding-I have black garbage bags taped to his windows and black out curtains. There cannot be a dot of light and it must be complete silence. He slept for 15 mins. My Mom alarm was beeping like crazy-this was not like him. He woke up, was still favoring his arm but otherwise seemed fine. They finally called his name and took us to some chairs in the hallway out back. We were in the center of the action in the back of the ER. S was loving every minute of it! He was singing, he was laughing, he was enjoying snacks. You would think he was at a party. Eventually the nurse came over. She could see his big smile and how much he was enjoying himself. She asked me if I thought his arm was still bothering him. I told her that I wasn’t leaving that I need to have him checked for peace of mind. She was sweet and understood. Visually, he looked as if he was having the time of his life but I just couldn’t leave. The crying and napping didn’t settle well with me.

The doctor came and sent us off to Xray. We came back to our familiar chair in the hallway and waited for the Xray to come back. It didn’t take long. The doctor came and told me the Xray showed a fracture near his elbow. They had called the orthopedic surgeon to come consult because he was so young and has lots of growing left to do. The orthopedic surgeon came and wrapped his arm. We later received a cast and he is all healed up.

It’s amazing to me that besides a short nap and some initial tears there was no other real indication that he had sustained the injury.

Now, because he doesn’t really react to pain and because he is non-verbal if I suspect an injury then I have to take him to the hospital to be checked. We are usually in the ER every month or every other month.

My boy is so brave and strong all the time. I’m hoping as time passes he will get injured less and I will get better at reading his reactions or lack thereof. His high pain threshold is just another complication in our world. He keeps life interesting!

The Road to A Diagnosis

After I stayed up all night completing online checklists, reading warning signs and article after article about Autism. I knew that I had to pursue this…it was the right thing to do. But, I didn’t really know what it all meant.

I am the Queen of lists. So the first thing I did was make a list of all the concerns that I had about behaviors. It was an extensive list. I didn’t want to get in front of the doctor and have my mind go blank. I needed to be prepared so I could move this forward and so the doctor could get a good understanding of why I was there asking about Autism.

Once I created the list. I made an appointment with our doctor. And I cried a lot. I knew my son had autism-there wasn’t a doubt in my mind. I needed to get it out of my system. I needed to deal with the emotions so I could push for the diagnosis. I also knew we needed help and a diagnosis would assist us in getting what we needed.

At our appointment in September, I told the doctor that I was sure Stalen had autism. He suggested that I wait until his 18 month assessment which was in two months. I remember getting upset when he said that to me. I told him that I was Stalen’s mother and I knew he had autism and I wasn’t waiting. It made me emotional to say those words out loud. Our doctor agreed to refer me to a pediatrician.

The next few months seemed like an eternity as we waited to hear from a pediatrician. In October we did the 18 month assessment. The nurse agreed with my concerns and referred us again to a pediatrician but also for a speech assessment and hearing. I was happy because the more information that these professionals provided for the pediatrician the better.

The hearing test went good in that Stalen co-operated and we were able to do the test. The audiologist concluded that there were no problems with his hearing. So when I called his name or pointed at something or all the times that it seemed like we were talking through him, he actually did and could hear us.

I met an amazing speech pathologist. She had many years of experience and was familiar with autism. I shared my concerns with her and she played with S for quite a while. When she was finished observing I decided I would just ask her. I asked her for her personal opinion. I knew she probably wasn’t allowed to tell me but when I asked if she thought he had autism I could see it all over her face. As we left her office, I felt validation like I wasn’t on a wild goose chase anymore. She was amazing and actually wrote a letter to the pediatrician with her findings and called his office to follow-up on the referral. She called me at home to tell me that they would soon be calling us for an appointment.

On December 08, S had a seizure incident. We rushed him to the hospital and he was observed. He was referred for a sleep deprived EEG. It was one of the most traumatic and scary events of my life. (I will share more on this in a future post…)

Shortly after, we received a call with an appointment for the pediatrician. FINALLY!! I know it’s silly but I felt like I had won the lottery! After months of waiting and preparing, we were finally going to see him. Now there was a small beacon of light flickering in our tunnel, hand in hand, we begin moving toward it.

On January 16 2017, we saw the pediatrician. I felt so anxious because I wasn’t sure how it would go. The doctor observed and played with S for a long time. He had already received medical reports, audiology , speech assessment, notes from family doctor and ER visits. On that day he completed the confirmation of diagnosis form for autism spectrum disorder so we could access early intervention services in NB.

As the diagnosis form was presented to me so I could sign it. I felt numb. I didn’t feel scared because I had no idea. I had no idea what was in store for us….I had no idea of what it all meant….I had no idea that we were already on the craziest, wildest ride and that I couldn’t turn back.

Time to breathe and buckle up.

Today…

Today, as I look at baby pictures from the past four years, my brain is scattered and my emotions are high. Call it day dreaming, call it nostalgia, call it what you will.

I remember when S was a week old and this picture was taken.

I was a new Mom and so excited with so many hopes and dreams of the future. 

I wondered if he would grow up to be a fireman, an artist or lead a company? 

Would he play a musical instrument and tell lots of jokes?

Now I wonder, will he ever talk? Will he ever drive a car, and graduate high school? Will he be able to cook and take care of himself?Will I need to help him shave and hold his hand in the parking lot when he is a grown man?

These are the things that keep me up at night. Even though, I have no control over any of it.

I have different dreams for my son now. I will always dream for him, hope for him and pray for him. But, Autism has forced me to be realistic.

Autism is hard. It can be mean and ugly. I don’t love it. I don’t even like it-not one bit. How can I like something that has robbed us?It has taken so much from my son. I try so hard every day to protect him-but I cannot protect him from this. It’s not beautiful or amazing-but my son is.

I have accepted that he has Autism and I love and adore him no matter what -but I will always fight against Autism. Some days I will win and some days Autism will win. But, I guarantee we will put up one hell of a fight.  We are not quitters, we will always rise to the challenge of Autism- no matter what.

It’s hard to watch your child struggle every day whether it is with making friends, the anxiety of leaving the house, recognizing his name, giving a hug, eating a cheesie or holding a fork. The hardest and frustrating struggle is with his lack of language. I can’t imagine not being able to talk. Not being able to ask for something you need or want. It is hard to watch him cry in frustration because he wants to communicate with me, but his brain just isn’t cooperating. He has no words.

There is no beauty in any of that.

We fight autism every day. We face each day with positivity, we do many therapies, we go to public places, we try new things, we focus on fun and making memories. We advocate. We share our stories. We try so hard.

Everyone has their own journey; I love hearing their stories, where they are at and how they feel about Autism. But, it doesn’t mean I have to feel the same way.

Maybe some day my feelings towards Autism will change, but today we must focus on this day…this fight…our journey.

Autism: The Basics

From Autism Canada: https://autismcanada.org/about-autism/:

Autism Spectrum Disorder (ASD), or autism, is a neurodevelopmental disorder that impacts brain development causing most individuals to experience communication problems, difficulty with social interactions and a tendency to repeat specific patterns of behaviour. There is also a markedly restricted repertoire of activities and interests.

It is typically accompanied by co-occurring medical conditions such as epilepsy, sleep disorders, gastrointestinal abnormalities, immune dysregulation and mental health issues like anxiety and depression.

The term “spectrum” refers to a continuum of severity or developmental impairment. Children and adults with ASDs usually have particular characteristics in common, but the conditions cover a wide spectrum, with individual differences in:

  • Number and particular kinds of symptoms
  • Severity: mild to severe
  • Age of onset
  • Levels of functioning
  • Challenges with social interactions

Individuals on the autism spectrum tend to have varying degrees and combinations of symptoms and therefore treatment must be specific to the individual. It is also important to keep in mind that individuals with autism vary widely in their needs, skills and abilities.

From me: In short, individuals with Autism like my son, their brains are wired differently. Autism is not a visible disability. When you look at my son, you don’t immediately know that he has Autism. If you were observing his behaviour you may think he is spoiled or bratty and that I don’t know what I am doing as a parent. But, in reality he may be throwing himself to the floor, screaming and crying because lights are too bright, there is too much noise, and he can’t process the environment that he is in. You may see him flapping his hands and think he’s weird but in reality he is regulating himself and coping with his environment. This is why Autism Acceptance and Awareness are so important to me-so that he is not judged or discriminated against. Also, because we need to go out in our community. We need to go get groceries, go to the doctor and have a life.

There is a saying in the autism community, “if you know one person with autism then you know one person with autism”. No two individuals on the spectrum are the same. My son’s autism is different than other kids his age who also have autism. That’s why I always say “Our Autism…Our Story” because it really is just that.

If you want to know anything about Autism, please ask.

I would be happy to answer any questions.

–Stalen’s Mom