Sleep & Autism

Sleep and autism have brought about big feelings of stress, desperation, anger, blame and guilt for me.

Exhaustion is no joke. It effects every aspect of your life.

In the early days, sleep was pure hell. It was a nightmare that I lived every night with my son. Every night I would put him in bed and I would have to hold him securely in place. He would thrash and scream, cry and kick. Most nights I would cry too. He just couldn’t go to sleep. It lasted 3-5 hours every single night. Each night it seemed to continue for a little bit longer.

What was I doing wrong? Why had no one told me that it was so hard to get a baby to go sleep? When would it get easier? I am a horrible Mom.

These are the thoughts that went through my mind. I had no idea that my son was autistic. I had no idea that sleep problems were common with autism. I had no idea that he couldn’t settle or calm himself down enough to go to sleep like I could.

I would finally get him to sleep and any noise-a cough, a door squeak, rustle of a blanket, a barking dog, the sound of a loud engine driving by,….he would wake for hours. I would hold my coughs or urge to move my arm that had fallen asleep. I wouldn’t drink fluids after 5pm because a trip to the bathroom in the night was risky business.

This went on for months.

Sleep is still a challenge and lacking, I think it always will be. But we are in a much better place thanks to research, strategies, knowledge, maturity, prayers and luck.

We have just entered our 6th sleep deprived year. Some people will never understand that struggle or the daily strength that it demands.

Those dark days of no sleep, hours and hours of holding my son while he teetered on the cusp of being awake and falling asleep were some of my most difficult days. I have never felt more alone or disconnected from him than I did in those 3-5 hours every night in the dark begging and praying for sleep.

Today, the memory of those days and how I felt serve as a reminder…..

A reminder of survival. There are all these moments that you think that you won’t survive but you will.

The forces that were designed to break your spirit will built it-stronger and more resilient.

A reminder of progress, that things do get better.

A reminder of learning, that over time as knowledge grows so does understanding and reasoning.

A reminder of forgiveness, that we are not the cause of all of our challenges and struggles.

A reminder of time, that things may feel permanent or stuck but there is room for movement. Our feelings can blind our view of temporary.

A reminder that new hope rises like a Phoenix from the ashes of struggle, bitterness, anger and self-blame.

You have to fall to rise.

I’m bringing the sunshine

When I look at this picture I see my whole world. My sweet boy who is brave, strong and has been through so much, especially these last few years. I see the hospital visits, the procedures, the tears, the fight, the anxiety, the days of just not being well. It is hard on the eyes, the history of what lies beneath.

Yesterday there were tears. I am sad for his health challenges. I am tired of tubes, flushes, daily emails to nurses and doctors, doses of medicine, weekly trips to the hospital, the pharmacy and making medical decisions. I am tired of decisions that involve science, anatomy and the balance of the two. I am tired of my closet being full of kangaroo bags and catheter tipped syringes. I had to make two treatment decisions yesterday that I just didn’t want to make.

I feel like I’m stuck in a never ending episode of a hard, challenging version of ground hog day. The hard just keeps repeating itself over and over, switching from problem to problem in a vicious never ending cycle.

Yesterday, the weight of it all was heavy for tired shoulders. It’s hard to make medical decisions when you just don’t know what the results will be. You never want to make a decision that impacts quality of life. You never want to put your child through a procedure that won’t help. But, we make those decisions every single day with prayers and hope.

The decisions have been made. I’m at peace with it all and am scrounging for every little bit of hope and faith that a new replacement tube and a new course of treatment will give great results for Stalen. I’m hoping and praying with all my might that it will lessen his load. I’m not happy that he will be wheeled away from me to the OR some time in the near future.

I just want my boy to be running in the back yard, giggling and feeling well. I want to lighten his load more than anything. I want easy, stress free days. At this point, I’ll take even one.

I’m tired of the hard. We have weathered storm after storm. Even the toughest surfaces have cracks. All of ours were showing yesterday.

We always hope for good days and other times we have to push through and create them ourselves.

I’m bringing the sunshine.

Take Care

When my son was diagnosed with autism at 21 months, I had no idea what I was doing.

It was hard. It was overwhelming.
I wasn’t sure how to deal with his behaviours. We weren’t getting any sleep. He wasn’t eating well. We were in the thick of it.

I was trying to reconcile the unknown, worries, fears, the future, a family, and the reality of the present.

It was too much when combined with all of the regular daily life stuff of laundry, groceries, cooking, chauffeuring, cleaning and errands.

When I think back, I now know that we were in survival mode, white knuckling it as we hung on for a better way.

Even today, we go in and out of survival mode.

But, things are different because of what I’ve learned over the years about taking care of myself. I wish I had learned these things sooner.

I ignored all the talk about self-care when Stalen was diagnosed. I had no time to think about myself as I processed his diagnosis. There was no breathing room in our chaos.

How can you make time for yourself when your child is biting them self and banging their head off the floor and walls?

But, there were little things that I could have done to make things better.

I fell into a spiral of eating fast food and quick processed meals. I was eating to have a meal rather than eating to fuel my body. I started working with a dietician and have learned that there are quick, healthy options that will fuel my body. Proper nutrition helps me feel good and gives me the energy I need to get through the loooooooong days.

I try to walk 30 mins every day. Even on the days that are hell. Fresh air and movement are so good for you. When the weather is good, Stalen gets in his stroller and comes with me. When I’m at home I jump on the treadmill or do a quick online workout video. It could be the worst day ever, but movement always makes me feel better and stronger.

I try to sleep whenever I can. Naps are important too. Never pass up an opportunity to grab 20 mins or to sleep in. Never!

I also try to go to bed early. I’m more of a night person so this is hard so sometimes I go to bed really early one night a week. Sleep is so important!

Find an interest outside of your child’s diagnosis. I love to watch Netflix and reality tv. In the spring/summer I like to run and garden. So much of my time is dedicated to my son’s care, it’s nice to have interests that don’t involve autism or his cecostomy. It’s healthy not to spend all my time researching tools, approaches and treatments.

It’s so important to find friends who understand raising a child with a disability and complex medical needs. It can be very isolating and difficult to physically attend play dates or meets ups with friends. I have found so many wonderful friends online who have been such a great support to me. There are no expectations and you don’t have to leave your house.

Remind yourself that you are human and that you are doing a good job. Social media is very one sided so don’t compare yourself to others or think they have it all together. Don’t wait for praise from others to validate yourself.

No matter where you are on this journey-whether your just starting out or years in-you must be kind and forgiving to yourself. No one is perfect and no one has it all together.

You will never speak to anyone more than you speak to yourself so make those words kind, encouraging and supportive.

Autism is lifelong. There is no competition. It is not a race, it is a journey so take care of yourself!

What’s in a smile?

For the longest time, I’ve always thought that a smile meant happiness. I mean isn’t that why we are told to smile for pictures, to show we are happy?

When you have a non-speaking child you learn to pay close attention to smiles and the communication behind them.

When Stalen is having a medical procedure he often smiles at me. His smile reassures me that despite what he is enduring he is okay.

When I see Stalen every morning and he smiles at me I know it is his way of greeting me with a “good morning”.

When I see Stalen for the first time after being away from him I know he’s smile says “welcome back, I missed you”

When I show Stalen something new, his smile tells me that he is interested, curious and wants to see more.

When I’m eating and Stalen smiles, I know he may want to try a bite or have a better look at my food.

When I’m struggling with something and Stalen shoots me a smile, I know it’s his way of being supportive and encouraging me to keep going.

When Stalen squeals and smiles, it’s a sign of pure unfiltered excitement.

It is music to my heart.

When I show him something and he smiles and raises an eyebrow, I know it’s his way of saying “you got to be kidding me”

When I ask him a question and he just smiles I know it’s his way of saying “your not going to like the answer to that”.

When he wraps his hands around my neck, looks straight into my eyes and smiles, I know that it’s his way of saying “I love you Mom”.

Stalen has taught me that a smile is so much more than happiness. It is just one of the unique ways that he communicates with me. We have our own form of communication, accepted and understood between our hearts. It is a symbol of hope for all to see and feel, you just need to listen with your eyes and heart…

What’s in a smile?

So much Power….hope, light, love and so many unspoken words felt by the heart.

Screen Time

Every person is different.

Every parent is different.

Every family is different.

What works for one person, one parent, and one family won’t work for everyone else.

My son is 6 years old and autistic. He is also non-speaking. He uses an iPad with special software to communicate.

He has access to his iPad at all times. It is his voice. It is how he communicates. I will not take it away from him to reduce his screen time so I can meet someone else’s standards of a “good mother”.

I’m exhausted from the screen time shaming from people who have not walked in my shoes.

I embrace technology for my son because I have felt the heart break of him crying and frustrated unable to tell me anything….

I have also felt the joy of having him respond with his Ipad to a question that I’ve asked him.

I’ve talked to my son for years only to be met with silence. He is finally able to communicate with me now.

If I will be judged because of his access to his voice….so be it.

If you look at him closely you will see a little boy who is happy and loved. You will see a little boy who is fully accepted and adored by his family. You will see a little boy who is learning and growing.

He is not more or less than another child who does not use technology. He is just him.

I am not a perfect parent but I do know what works best for my child and my family.

So, just as I’ve always done, I’m going to do what works best for us. The opinions of others are just that.

Not Us

Without any hesitation I can say that my son has made me the mother I am today.

He has made me strong and brave as he has allowed me to come along with him as he faces his challenges in the same way.

He has increased my awareness that everyone is beautifully different and capable.

He has helped me to find the joy in each day.

He has shown me an appreciation for the simple things.

He has taught me the importance of kindness,
patience and understanding.

He has shown me that words and actions do matter, especially those directed towards someone else.

He has taught me that there is more than one way to communicate and more than one way to do most anything.

He has taught me that it is okay to have hard days and bad days.

He has shown me the power of hope, love and positive thinking.

He has taught me that you can still go through hell and smile.

I’m an improved version of who I once was.

He has made me better. He pushes me to be the best version of myself every day.

I read a quote recently and it said,

“ men are what their mothers made them”.

But, that’s not the case for us.

One Night.

Language regression is hell.

I remember my son had the cutest little voice and his language was progressing quite well.

One night he went to bed and woke up the next day completely silent. I didn’t know it then but autism was a silent thief and took his words. There was no warning. The words were just gone…..lost.

It was scary and heart breaking that things could change so quickly. In a matter of one night Stalen went from chatty to quiet.

One night.

Nothing prepares you for seeing your child go from happy and thriving to quiet and surviving.

I was heartbroken and scared that we didn’t know what was happening or when he would speak again.

I can’t imagine how he felt. He was just a baby.

I was worried that we had done something wrong. Then I learned that he had autism and it all started to come together.

I had never known a non-speaking person before and now I am raising one. We have definitely seen our share of behaviours and meltdowns due to the frustration and inability to communicate and express wants and needs.

We don’t have it all figured out, not even close.
But, over time we have adjusted. Stalen has found a means to communicate using gestures and his AAC device. We still have moments when communication is extremely difficult and non-existent. We still have moments of frustration. There are still tears.

But,

we definitely have more hope than we had on that day that we woke up to silence.

we definitely have more faith that things can always improve and get better.

we definitely know that heartbreak can be replaced with healing.

we definitely know that darkness can be replaced with sunshine.

There is nothing more powerful than the hope and love you have for your child.

Empower Each Other

Yesterday as I scrolled my news feed I saw a picture of a gorgeous Mom with a baby. The Mom wrote about how challenging and hard the baby years can be. I read all the comments…she was applauded, encouraged, complimented, supported, and validated. I’m sure she felt better and so did others who related, but felt alone.

No one attacked this Mom. No one accused her of being a bad Mom. No one accused her of not loving her child or ruining their life. No one told her that her baby was better off without her. There was no mob ready to lynch her. She wasn’t judged, hated or exiled.

Many times when I see the Mom of a child with disabilities share her hard, I see the attacks, judgements, and negativity.

I see Moms with amazing and complex children who are struggling with behaviours, lack of sleep, medical challenges, no self-care, deteriorating mental health, challenging relationships, family dynamics, and financial hardships, just to name a few.

I see Moms who are always selflessly giving of themselves to care and provide for these kids being attacked and called names.

When a Mom says that something is hard it is a reflection of the current situation, it is not a reflection of the quantity of love that she has for her child.

I’ve even seen a Mom blamed because her child just willingly tried a bite of cheeseburger for the first time and he was over the age of 6. Her son has a limited diet like my son. Yet, she was attacked, she was blamed like it was within her control and all her fault. She was painted as a horrible mother when she is in fact one of the most amazing moms I know.

I see my fellow special needs Moms being shamed in the worst way. I see their worth being diminished by the words of strangers who don’t even understand our battles.

When are we going to start empowering Moms of amazing children with complex needs?

When will we give them the same empowerment, support and encouragement that we give all the other Moms?

Please be kind.

Please don’t judge what you don’t live or don’t understand.

And if you can’t do that please keep scrolling.

No one is perfect.

But we all deserve the opportunity to be seen and heard especially in the thick of the hard-when we need it the most.

Be the friend you wish you had during hard times.

Purpose

I may never be in the stands cheering as my son skates down the ice with the puck. But, I feel the same pride, every time I watch him make progress and acquire skills.

My son Stalen is autistic. He was diagnosed when he was 21 months old. He is almost 6 and non-speaking.

Every time he says a new word or tries a new food, it’s like the last minute of the third period, the game is tied and he’s on a beakaway, headed down the ice at full speed, he shoots, he scores!!!

The future is uncertain with autism and although I may not have the exact same experiences with my son as other parents have with their children. I know that our life together will be filled with wonderful memories, pride, deep love and laughter. To me, that is the formula for a life well lived.

Stalen may not play hockey but he will have many rich experiences in his life. He was in awe when he saw the Niagara Falls lit up at night, he giggled uncontrollably when I took him for a go-kart ride. He smiled at everyone that watched as we lifted his buggy onto the deck of a boat to go whale watching. His eyes were gigantic when he saw The Wiggles in concert for the very first time.

Even though I have and will continue to give Stalen adventures throughout his life. I feel like he has already given me far more.

I won the lottery the day I became Mom to this extra special boy.

I feel like I’ve already gained immensely because of what he shows me every day. I’m talking about the priceless stuff that can’t be assigned a value and escapes most words.

Stalen encompasses much of what we all strive to be.

The purpose of life is a life of purpose.

He may not be on the ice scoring actual goals but he’s winning at life because of his perspective and the unique way he only sees, and knows goodness.

He loves every one unconditionally, even if he doesn’t know you…he loves you.

He always answers hate with love. Indifference with a smile. He keeps moving forward in the face of pity and ignorance. It’s not recognizable to him.

In situations when we hold back, he’s all in.

He greets it all with his signature spins, flaps and smiles. I know it’s his hearts carefree way of saying, “look what I can do”.

Forgiveness…he does that too. He doesn’t focus on the past, mistakes or shortcomings.

He will always be happy to see you.

He finds happiness in every birthday cake (even though he doesn’t even eat cake-his excitement would make you think otherwise), every light that is turned on/off, every fan that is spinning, every you tube video, every song, every bite of vegetable cracker, every time he sees an iPhone of the Netflix logo.

He makes every hug matter. Every smile is stuffed with goodness just for you.

He is home to me.

He is all the love, comfort and peace that you feel in your favorite place.

So, when you think of me with sadness because of some of the things I may not get to experience with my son because he is autistic…

Please know…

He has and he will continue to give me many wonderful adventures that will be shaped by the amazing person that he is. These adventures can never be replaced or duplicated because he is the main ingredient.

My son has blessed me beyond measure and fills my heart with love, purpose and gratitude every single day.