Somewhere in the Middle of Hope

Most days you can find me somewhere in the middle of hope at the intersection of not knowing what I’m doing nor where I’m going. This is the life I’ve grown accustomed to-the autism life. Covid -19 isn’t my first “new normal” receiving an autism spectrum disorder diagnosis for my son 3 years ago was. In an instant our priorities and responsibilities changed, our entire world was rocked as we knew it by autism. My son Stalen was diagnosed on the spectrum at 21 months. He is considered non-verbal.  Today, he is a handsome, loving and all around AMAZING 5 year old. I can’t begin to try to put into words the love I have for him. He is my world. 

So, here I am 3 years into this journey with him and I still struggle. Some days things fall into place and I breath easy as if someone handed me a GPS, I have a full tank of gas and I know exactly where I’m heading and how to get there. I’m confident and I can even push my luck and turn on cruise control. But then, out of no where a freaking detour. No idea where I’m going, I’ve never been down this road before. I’m feeling anxious and uncertain, the gas lights on and I’m certain I’m completely lost. I’m a total mess! 

But there it is, that familiar voice of hope in my head, giving me direction, a chance to catch my breath, guiding me and propelling me forward with the promise of better days and the desire to be more brave as I try again. 

You know that voice…..

The one you hear every time your lost.  

The one you hear at 3am when your beyond exhausted and your child is awake, ready for the day and demanding chocolate milk and chicken nuggets. 

The voice that attempts to calm your anxiety on your way to another appointment, or after a bad day.  

The voice that tells you that it won’t always be like this. 

The voice that tells you that tomorrow will be better. 

The voice that tells you that you can do hard things. 

The voice that tells you to wipe your tears and try again. 

The voice that encourages you to go all in when your all out. 

And just when you think that voice is gone, when you think “I’m done”, “I cant do this” it creeps up in photos of better times in your Facebook memories or in the comforting, encouraging words of friends on similar journeys. 

It’s hidden in the comforting smile of a stranger when your child is in a full blown public meltdown. 

It dwells deep within your tribe of supporters and encouragers. It  is tightly wrapped around the words, “I get it”, “I understand”, “how can I help”.

Hope always finds a way. 

It’s in the actions of neighbors who turn their Christmas lights on in July because your child loves them or it shines brightly in the form of “happy packages” left on your front step to cheer up your son. 

It’s the voice of your child saying “Mama” for the first time or even when he says “bum”. 

It’s even hidden amongst the smiles and gasps when you present him with new shoes. 

Yes, the bad times are really bad. But, the hope that sneaks through during those times when you are forced out of desperation to look for it is so much better. Hope is the air we breathe during survival mode. It is the diamond in the rough. 

Autism has taught me to find, search, appreciate, fight for and to hold on to hope like no other experience or situation of my life. 

The progress, the memories, the firsts, the moments that you never thought would happen but they did, the sleepless nights you lived to tell about, the kindness, love, and acceptance of family, friends and strangers. 

Just like we need to find the joy, we also need to harness the hope. 

So, now when I find myself at that freaking detour sign, I have no idea where I am or what I’m doing… I DO know I will find my way back somewhere in the middle of hope.

 I always do. 

Erase the Word

I wish the r-word would just disappear.

Poof! Be gone. Permanently erased forever.

The r-word is an euphemism for “retard” or “retarded”.

It is a derogatory and insulting term used to describe or insult individuals with intellectual disabilities. I’m so tired of hearing it and reading it on social media used to insult a person, place or thing through comparison to a person with an intellectual disability.

There is no correct way to use the r-word. None. It needs to go!

If you haven’t already, please kick the r-word to the curb-once and for all.

I’m so tired of reading the expression “that’s so retarded”. People need to stop using it as a descriptor. It’s not a joke. The r-word has such a negative stigma attached to it.

In a world of social media and a pandemic, more and more people are going online including those with intellectual disabilities. They have a right to be in the online space free from disrespect and online bullying.

I have seen friends use this word. It’s like a stab to my heart. They know the struggles that I have with my child, how hard he works and the obstacles he faces and seeing them just throw that word around, out into the world- like nothing. It is beyond disheartening. It is really one of the worst things that they can say.

I wish that people thought before they spoke. I wish they realized how hurtful and demeaning the “r-word” is. I wish they could live in our world for a day so they could realize the love, kindness, strength, fight, heart, friendship and perseverance of those living with intellectual disabilities. They are missing out. This is more than a word, it’s about respect and attitudes. It’s about people looking down on others and judging them because of perceived capabilities.

Never make an assumption about what another person can and cannot do.

My son is an amazing little boy. He loves life and other people. He likes muffins, telling jokes, YouTube and buzz light year. He loves hugs, stickers, swimming and being included.

He is love, kindness, acceptance, purity, positivity, strength, and courage.

He is smart.

He is capable.

He has encountered more obstacles, jumped more hurdles and climbed bigger mountains in his mere 5 years than some people encounter in a life time.

He is more than any assumption, barrier, limit or diagnosis.

He is and will always be more than the ignorance, negativity, hate, opinions and preconceived notions of others.

He will always be more than the r-word.

Journey to a Cecostomy

My son Stalen was diagnosed on the autism spectrum at 21 months old. He is almost 6 now. He is also non-verbal.

Stalen has always had a very limited diet. In January of 2018, he began eating eggs and a variety of other foods. He had eaten 3 baby purées up until this point. It was huge for him. I finally felt relieved that he was eating more age appropriate and nutritious foods.

My relief was short lived. If there’s one thing that I’m quite certain about it is that autism never lets up. It doesn’t care about vacations, holidays or even pandemics. There are no days off from autism. Just when you think you have one fire under control, you can smell smoke coming from another direction. There’s always a blaze just waiting to be ignited.

As soon as Stalen began eating more variety I noticed that he was having stomach problems. In particular his output was not even close to his input. I took him to the doctor and he was immediately prescribed peg powder. This was the beginning of a new hell. My son Stalen was diagnosed with severe constipation.

I’ve always thought that constipation meant you couldn’t have a bowel movement but that’s not the case. Stalen was able to go to the bathroom but it was never enough and it was never easy.

He was hospitalized repeatedly over the last few years. When his system would “fill up” he would vomit until it emptied. This would last 3 days a month. I would put him on a liquid diet and then transition him back to food and he would be good for about two weeks. Then it would catch up to him and we would live this vicious cycle every month for a year and a half.

At first, all the professionals thought that he was holding his stool. For almost two years, I argued and pleaded a different case. I just knew that holding was not causing this problem. I told anyone that would listen.

We went through two pediatricians. There’s only a handful in our small city. I was going to run out of doctors unless someone took me seriously. I finally found a doctor that listened to me and took my concerns seriously.

I remember having a conversation with a doctor and they told me that I may have to accept that this was it for us. There were no other diagnosis at play. I was so mad at this response and vowed that I would never accept my son laying on the floor vomiting uncontrollably for a few days every month. No mother would accept that fate for their child.

It is very difficult to watch your child suffer and in pain every single day with no way to express how they are feeling.

Stalen’s constipation effected his entire world. He couldn’t eat because he felt full all the time, he couldn’t sleep, he had difficulty learning because he couldn’t focus. He also had pains, cramping and lots of side effects from the treatments that we tried. He was supposed to start kindergarten last year but he was granted a one year deferred entry because of his medical challenges.

It is common for individuals with severe constipation to develop a condition called encopresis. Encopresis, sometimes called fecal incontinence or soiling, is the repeated passing of stool (usually involuntarily). Over time, the retention of stool can cause the bowels to swell and a loss of control over bowel movements. This condition makes it impossible to leave the house.

We have tried so many things: “poop” massage, probiotic, prebiotic, more fiber, more water, prunes, diet changes, nemechek protocol, lansoil, lactulose, gut stimulator medication, laxatives, enemas, ng tube clean outs- and that’s just what I can remember. Stalen was tested for so many things allergies, celiac disease, he had two mri’s, his spinal cord was checked, his stool was checked for parasites, he was checked for hirschsprung’s disease. He had so many X-rays, and tests of his digestive system. Everything always came back normal.

Stalen was prescribed a weekend regime of pico salax. I was so excited that he would finally get relief. I didn’t know much about pico salax but I was told to expect to spend the weekend in the bathroom. It’s a colonoscopy prep medication that cleans you out really good.

Stalen had an adult dose every day on the weekend and didn’t go to the bathroom at all. Finally, my prayers had been answered. It is impossible to hold stool with pico salax. This was the proof I needed.

After the pico salax, Stalen was admitted to hospital and hooked up to a ng tube for a full clean out. We expected to be there for 24-48 hours to get him cleaned out. Unfortunately, Stalen was hooked up to the tube for 5 days and it didn’t clean him out.

Stalen began an intensive regime of enemas. A nurse came to our house at least 4 times a week to assist me in administering them. He’s also had barium and tap enemas. Each and every time was the same anxiety, the same fight. It never got easier for him.

In July 2020, it was determined that Stalen would have a cecostomy. I was told that it was recommended because all other methods were exhausted.

In September, Stalen had a cecostomy. A cecostomy is a tube similar to a feeding tube. It is in the stomach and connects to the intestines. It allows me to pump medication directly into Stalen’s intestines to clean out his system. I will share more about his surgery, recovery in an upcoming post “Life with a Cecostomy”.

Investing in a Communication System

My son Stalen was diagnosed on the autism spectrum when he was 21 months old. He is now 5 years old. He had a lot of first words early on but had a major language regression at approx. 13 months old. It was devastating to the watch as he went completely silent for months and lost all his words. He has been considered non-verbal since then.

I have seen and felt Stalen’s frustration from his inability to communicate and express himself. For months, days and weeks he struggled because this need was not met. These big feelings resulted in meltdowns, self-injuring and other non-safe behaviors, and aggression. Many of our darkest days and hardest hours could be linked to Stalen’s need to communicate. Overall, I had a beautiful and amazing little boy who just needed to express and engage with others and his world, but lacked the skills and tools required to do so.

One of the best things that I have done for Stalen is invest in a communication system for him. When I say invest, I’m referring to my time and energy. I had to commit to learning how to use it, to work with Stalen on it, and to find ways to incorporate it into his everyday life. I had to work hard and he had to work harder to fully integrate this system into his life.

We originally started working with PECS (picture exchange communication system). Stalen did well and could request basic and preferred items. I loved motivating him and working with him on it. But, I was never fully able to invest myself because of my reservations. I couldn’t envision him using it throughout childhood. It was definitely beneficial in teaching him the notion of “ask and you shall receive”.  It gave him basic experience with the concept of communication.

Let me be honest…there are so many things that I have to bring with us when we leave the house-chews, diapers, wipes, epipen, medications, extra change of clothes, snacks….well, you get the picture. For me, The PECS binder was another item that I needed to carry or stuff into an already full bag. I often lost or misplaced pictures or they were so preferred they wore out. Stalen loved the texture of his pecs picture cards so he would crinkle and bend them, despite them being laminated-it did damage.

I couldn’t envision waiting in a line up at the bank or grocery store and Stalen pulling out his binder and pictures and communicating with me. I just wanted something that would fit better with our busy on the go lifestyle. I wanted more….

I did my research and was able to get an iPad equipped with Proloquo2go. Thankfully, our intervention team was just as excited and so supportive about the switch. Stalen was also developing a keen interest in technology. So, it seemed like the perfect time for us to take the plunge from one system to another.

Stalen has exceeded my wildest expectations with Proloquo2go. It is providing Stalen with rich opportunities for communication that I never thought possible. We are working to incorporate it into all aspects of our life. Stalen has “sings” songs, tells jokes, plays board games and helps me read his favourite books-all with Proloquo2go. It is easy to maintain and build upon his vocabulary with the software and to just grab and go, we can take it almost anyplace.

We use a paper format crescendo board when his iPad is charging with the same words and symbols that he would see on his buttons on the actual iPad.

I have completely invested my time and energies into this system. I participate in many online groups to learn about features and opportunities. I find myself staying up late to add his toys and games and create new opportunities to engage with him. I also model whenever possible by using the software when I communicate with him.

By increasing Stalen’s ability to communicate, I have noticed less frustration/ behaviours from him, more participation and inclusion, more communication and engagement with his family, increased participation in daily activities and just an overall happier boy. I love how his personality shines through in his new abilities to communicate.

Our boy has always been amazing but this communication tool has made him unstoppable. It is slowly enabling him to smash the barriers and limits that co-exist with not being able to verbally communicate.

I highly recommend that parents consider a communication system for their child that will meet their needs, work towards their goals and  that fits best with their lifestyle. It’s not about choosing Proloquo2go, but instead, choosing what will work best for your child and your family.

I still have so much hope for the day when Stalen and I will verbally communicate. I believe that his communication system will help us get there. It is definitely showing him the benefits of communication, teaching him to communicate thoughts, feelings, wants, increasing his vocabulary and comprehension. He has been reading for months, is sending texts, using google and acquiring so many technology related skills-which is quite amazing and advanced for a 5 year old.

I have always talked to Stalen and asked him questions. We are now at a place where he not only understands my questions, but he can also respond. This is all I have ever wanted for him, for us!

He was Always Him

January 16, 2017

It’s been 4 years since my son Stalen was diagnosed on the autism spectrum. He was 21 months old. I remember he was wild in the room as we waited for the doctor to come in and speak with us. He was throwing toys and picking crumbs from the carpet. He was pulling single plastic gloves from a box hanging on the wall. I was trying to hold myself together with strict composure but could feel the lump in my throat and the anxiety deep in the pit of my stomach.

This was it…

The doctor calmly told me that Stalen was being diagnosed with autism spectrum disorder. I didn’t hear anything else even though I kept looking at the doctor and nodding and he kept talking. After a minute or two, he asked me if I had any questions. I smiled weakly and said no.

I had to sign a confirmation of diagnosis form which is forwarded on for services. My hand trembled as I wrote my name. I was so shook I didn’t even date the form like your supposed to. I took Stalen and high tailed it out of there.

I couldn’t wait for the solace of my vehicle. I remember the strong smell of the mans cologne in the elevator. I was close to breaking. I remember fumbling through my purse for change for the parking pay Center. Ugh! Why do I always carry so much unnecessary crap in my purse?!?!

Finally in the car, I grabbed my sunglasses even though it was a chilly day in January. I wanted to conceal the tears slowly rolling down my cheeks. I looked in my rear view mirror and there he was…my sweet baby. My whole world, in his own world. He was smiling, and staring off out the window. Oblivious to it all.

I took 3 exhilarating deep breaths. I felt them in my toes. Those minutes in that doctors office had completely drained me to my core, I was attempting to refill my tank.

I had known for a couple of months without a doubt that he was autistic.

But, I had known forever that he was amazing.

In that moment, things were different but really the same. I was still me and he was always him. There was no more wondering, it was confirmed. We were going to get the supports and services we so desperately needed.

He was my little boy to love and nurture and teach things to. I knew he would do it all, but he would just do it in a different way-his way, in a different time and space.

I didn’t know much about autism.

I didn’t know what the future would look like.

I didn’t have all the answers but hoped for clarity over time.

I was completely certain of only one thing…on that day, January 16, 2017, I knew him just like I had from the very moment he took his first breath into the world at 12:11pm on April 12,2015.

I knew he needed me and I knew I needed him and that was enough for me to start the car and take us home.

We have both come so far together in these 4 years.

My favorite sound

Some people love the smell of fresh bread, or freshly cut grass, or the smell in the air right after it rains. Some like the taste of the first sip of coffee in the morning. Some like the sound of waves crashing against the rocks. There is nothing like the laughter of a baby or birds chirping after a long winter.

For me there’s nothing like hearing Mom! I know how hard he must have worked for those words to come out….how everything aligned so perfectly in those few seconds to create perfection.

There is always HOPE. Psalm 73:26