Collaboration is a win, win!

One thing that I have realized raising a child with special needs is that collaboration is so important to his success. That collaboration can be with teachers, therapists, doctors, service providers and other professionals.

I don’t know everything about everything but I know Stalen quite well. When developing plans or strategies, I often know what we have tried before, his likes and dislikes, strengths and weaknesses, what he will tolerate and what he won’t. I think this information is pretty valuable especially when someone uses it in combination with their own area of expertise…they tend to come up with customized solution(s) or plan that will meet Stalen’s needs.

It’s not about putting forth one solution and it working but about a professional who realizes that every child is different and what may work for one child will not work for another.

It’s also about realizing that dynamic individuals like Stalen do not follow or fit the curve, graph or classic text book case. (Shocking, I know! 🤦🏼‍♀️)

When professionals forego my (parent) input they tend to try textbook, one size fits all approaches that aren’t customized to the complex needs of the Stalen. They also tend to not listen and when someone doesn’t listen to the basics about my child then I know they are not a good fit.

Many of our most successful relationships with professionals have been with those who can both lead and follow and switch between the two as the situation warrants it.

When someone uses collaborative inquiries like:
how do you feel about?
what has been his past experience with….
tell me more about this…
What do you think of this?
Do you think he will have a problem with _?
Mom, what do you think?
I really want your thoughts on this…

The advice that I would offer parents is to seek professionals that follow a collaborative approach. You will know within the first couple of minutes by the questions they are asking to learn more about your child.

The advice that I would offer professionals is to acknowledge parent input as a valuable resource and use it to your advantage to formulate a customized treatment for your patient/client/student.

Collaboration can lead to a win, win for everyone!

Keep searching ….

Every day on the drive home from school, I ask Stalen all about his day. What did you learn today? Did you make any friends? Was it a good day? Did anything funny happen today? and I make comments like I hope you were kind today Stally. I hope that you listened to your teacher. I’m going to give you 100 kisses when we get home. He always giggles at the 100 kisses part because he knows it’s true. As soon as we get home, he crawls up on my lap and hugs me tight and I shower him with kisses, fast and furious like a never ending monsoon.

One of the first things I do after that is look at his communication book to read the notes about how his day was. But, it’s still not the same as Stalen sharing it with me. I yearn to connect with him over his experience with the world outside our home.

Stalen can’t tell me about his day. He can’t answer any of my questions….YET. I know he will one day whether verbally or with his AAC. I can’t help but imagine his colourful and purposefully humorous answers dripping with personality. Until then, I will ask the questions every single day, I will still pause with anticipation and see if he answers. I will still be excited as if he answered and as if he told me so many interesting and fun things about his day.

I won’t say that it doesn’t hurt my heart or that it isn’t easy. I can’t say that I don’t hope or wish every single day for a word, a squeal, a sigh or anything in response.

This is a journey of varying degrees of extreme hard and joy, often disguised but always felt with the most lingering effects.

I am so thankful for the light that breaks through the hard. It comes in the form of notes like he was happiest today when dancing, or notifications that his teacher has sent me a new picture, and I open it to find my sunshine boy enjoying the swing at school.

Keep searching for that light. Always.

His loudest fan

I wish I knew then what I know now.

I was naïeve when my son invited me into his autistic world. I took his hand and watched in wonder and awe. Never had I entered such a space of simplicity, beauty, complexity or hard. I made mistakes. I was ruled by inexperience.

I’m not sure when the breaking point came, that pivotal shift to the exact moment when I found my voice to advocate for my son. It’s more than a discovery, it’s about setting words into action. When you realize that not only can you speak up, but you will speak up. You will realize that what you say about your child, their health, safety and well being doesn’t just matter. Your words pack power because they come from a place of experience and knowledge, of having known them every single day of their life, through their highest, lowest, happiest and saddest moments.

No one else in the entire world holds that knowledge about your child.

There were so many things that happened that inched me closer and closer to growing into my voice. There was the middle aged lady at the grocery store that shocked me by laughing, mocking my son for his stimming and flapping.

There was the man that stood outside my car and verbally shamed me because he didn’t think my son or I looked disabled enough to be parked in an accessible parking spot.

There were the many whispers and stares of judgement and pity from other parents and strangers in public places during meltdowns and behaviours.

There were conversations with doctors that made me feel that my concerns about my sons health were ignored and dismissed.

It really was a battle from the very beginning just to get the diagnosis, then the fight continued for every program and every support that we needed.

Nothing comes easy when navigating an autism diagnosis with your child.

The final straw was when I reached that epiphany moment of realization that we live in a world that was built upon and operates on the idea of sameness.

Our fundamentals-systems, organizations, institutions are all based on the idea that we all have exact or very similar needs.

I have realized this over and over again as I raise a child who sees and experiences the world differently than everyone else.

Recently, I’ve noticed that my voice is stronger, more focused, and resilient. The unfairness that used to move me to tears now ignites my fire within for more.

More Inclusion.
More programs, more resources.
More understanding.
More acceptance.
More opportunities.
More actions, less talk.
More wrongs made right…

for individuals like my beautiful, autistic son.

When you see how the world really is, when you watch the struggles and challenges that your child faces every day, there’s nothing more that you want than to make those things better, easier or different than what they are facing right now.

This is not a race, it’s a journey. It’s about learning and growing. It’s about encouraging, supporting, and ensuring that your child has what he/she needs to be successful despite their challenges.

You will always be your child’s biggest and loudest fan.

I am almost 5 years in. I have just come into my advocacy voice. I’m not going to give up, shut up or let up….in fact I’m just getting warmed up.

20 days to go….

Twenty days from now we will take pictures of Stalen getting ready for school, he will wear new shoes, his lunch bag will be packed and we will be so hopeful. I will drop Stalen off at school and I’ll pray for kindness, understanding, learning, friends and great days.

For the last 6 years I have done everything for Stalen. I have also learned how to communicate with him and to read and interpret him. I know what his face looks like when he needs a drink of water and how when he puts his foot on me he either wants his shoes off or he has a hang nail. I know how when he dances and wiggles and can’t keep still he needs to pee and how to lay him flat across my lap and rub his back when he is having bowel pains. I know his favourite color is blue, his eggs must have ketchup and that his socks have to roll down over the top of his orthotics. I am the encyclopedia of Stalen containing everything from the date of his first steps, to his height, weight and how he got the scar on his forehead, and all things in between.

Most people sending their child off to school for the first time will have anxiety. The difference for me is that when I pick Stalen up at 2pm each day I won’t be able to ask him how his day went…what he had for lunch…or what he did today. He won’t be able yo tell me his fears or that funny thing that happened today. Stalen is non-speaking so he won’t be able to share his day with me. Yes, there will be a communication book going back and forth between the school and home but it will just be a minor snapshot of the obvious of his day.

I fear there will be so much that I miss!
I fear that I’m back in that starting over place where I was many years ago…learning to read and interpret him all over again. That was one of the most difficult and heartbreaking starting points with Stalen. I have reluctance to go back to that kind of hard.

Sending my son with special needs off to school isn’t just about trusting new people it’s also about believing in me. I will need to learn and find a new way to communicate with my son about school. I will need to learn to interpret new looks and signs from him. It’s a subtle reminder of how far we have come but how there will always be a new challenge looming over us.

It’s about new challenges in communication and from starting from a beginning point with him all over again. Beginning points are exciting but require such hard work and creative thinking to move forward amidst frustration, non-compliance and behaviours.

I know that we have what it takes to find the rhythm of this big school change. I know that we will be okay in due time. But, it’s the tears, frustration and bumps that we need to stumble across on this road that scare me the most.

I know that Stalen is amazing and this is an opportunity for him to not only have more enriching experiences beyond what I can provide at home but to spread his sunshine to so many others. He has within him the strength, kindness and love to change the world. After all, your ability to impact the world is limited if you just stay at home.

That is Stalen’s Way

There is a purpose for everyone you meet.

I hope that when people see Stalen they are reminded that strength and ability come in all sizes. I hope they remember acceptance and kindness. I hope when they see him they smile because I’m sure he will be flashing them his biggest and brightest smile.

Stalen is more than autism. I hope people see beyond non-speaking, spinning and flapping to the sweet boy who lies beneath who is filled with wonder and awe and waiting to bless them with his love and unique friendship.

I hope that when people see Stalen they remember that communication isn’t just spoken words. I hope they are reminded that different is not to be feared, but to be embraced and loved.

If they really see him they will immediately know that he’s smart, funny, and adventurous mixed with pure sunshine.

He is vibrant happiness.

He is the smile of hope.

He is more than any diagnosis, challenge, barrier or obstacle.

In the face of a limit, he is the little boy who could.

I hope that he reminds people of the potential of love and infinite possibility.

That is Stalen’s Way 💙

It’s nice to meet you!

It’s nice to meet you!

I’ve heard those words so many times I think I’ve taken them for granted. Recently, a woman said to Stalen “it’s nice to meet you”. He had given her a smile, a quick once over with his big blue eyes and his signature backwards wave. Her words were genuine and I felt like she seen him for his full potential and had quickly moved past his challenges and struggles.

So many times I see people whether strangers we meet or friends we run into and once they realize that my son is autistic and non-speaking, he doesn’t exist to them. I can’t think of anything more hurtful for a mother to witness…her perfect baby, her whole world discarded by others because of his disability. Ignored, dismissed or not even acknowledged because he is different and these differences are of no choice and of no control to him. It’s quite cruel when you think of it but it is a reality that happens every day for so many people.

I get it that some people are not sure what to say but a smile, a wave, a hi-anything really is better than nothing.

Stalen may only be 6 years old but he is amazing. He is a beautiful boy, who loves people. He is so much more than any dismissal or lack of acknowledgment.

He is worthy of a compliment, a smile, love, acceptance and friendship. He will enrich your life in ways that you can’t even imagine.

It IS nice to meet him, if your mind and your heart are open to it.

Hard

HARD

It’s one word that brings about so many judgements. It highlights the challenges, struggles and encompasses all the feelings. From the moment, I stepped foot in the autism world with my son I realized that autism brought with it a level of hard that I had never known and never experienced.

Things that I thought were once hard failed in comparison to autism.

I quickly realized that this type of hard is only understood by experience.

Hard isn’t just a word to us. Hard is every day, sometimes hidden in small challenges or right in your face.

Hard is meltdowns and self injury.
Hard is behaviours and aggressions.
Hard is watching your child struggle every single day.
Hard is not being able to go out in the community or having limited outings.
Hard is comorbid conditions that exist alongside autism.
Hard is isolation
Hard is lack of sleep , pure and utter exhaustion.
Hard is being tired at your core, in your soul.
Hard is eloping.
Hard is guilt that your not doing enough for your child.
Hard is guilt over your other children that need you too.
Hard is having to fight for programs and services that your child needs.
Hard is having to fight for everything.
Hard is discrimination
Hard is being vulnerable.
Hard is having to trust others with the care of your loved one.
Hard is family and friends who don’t understand and distance themselves.
Hard is not being able to visit family, and celebrate special occasions.
Hard is lack of communication (that often results in frustration that results in self-injury).

I’m tired of defending the use of hard and seeing so many others having to do the same.
When parents and caregivers of individuals with complex needs use the word hard they immediately get judged.

Some people think that hard means that you don’t love your autistic family member.

I love my son more than anything in the world. He is my everything.In my eyes, the sun rises and sets on him.

Hard means it is not easy. Hard means that it’s difficult to see someone you love face so many challenges every day.

Hard does not impact quantity of love, hope or faith.

Love is always greater than hard.

Hard does not mean that you are ready to quit.

Hard doesn’t equate to a burden.

Hard is just a word that describes many levels of difficulties.

A word we use to share, describe and validate struggles.

A word that encompasses all the tears, worries, fears frustrations, and struggles without going into details.

So the next time you hear something sharing their hard, don’t judge them instead tell them that they are doing an amazing job.

Everyone deserves to be seen and heard even if we don’t understand and share their struggles.

I am more than a caregiver

I am more than a caregiver…

But it’s easy to get lost in that enormous responsibility of raising a child with complex needs. Doctor, therapist, hair dresser, chef, physiotherapist, receptionist, driver, giver of hugs and kisses-we wear all the hats.

We also face significant challenges every day. Even the most basic task becomes extremely difficult when combined with autism. Things like visiting with family, celebrating special occasions and trips to the grocery store become Olympic events. It’s all about the fastest time to get in and get out, if we can go at all.

We often lose friends and others avoid us. Not everyone understands how difficult it is to exist in limbo between two worlds. One world that sees everything differently, minimally, beautifully and understands that everyone has different needs, wants and experiences. There is also the world of sameness that runs on the idea that people are very similar with similar behaviours, milestones, wants and needs.

I’ve spent more time in the last year with Stalen’s medical team of surgeons, doctors, and nurses than I have with my friends.

Our days are long and full, there isn’t must time for anything beyond the essential. I spend 6-9 hours every day between therapies and administering medicine, if you throw in making meals and doing laundry-the day is jam packed. It’s easy to lose yourself in the daily to do list, paperwork and challenges of autism.

I love my son more than anything in the world. I love taking care of him, it is my top priority. There isn’t anything I wouldn’t do for him and I wouldn’t have it any other way. But, there isn’t much time left for me. It’s the reality of the situation we have been living in these last few years. I know it won’t be like this forever.

I don’t know how you can travel this journey and not lose yourself. The only positive thing in losing yourself is that you will find yourself again. As you travel this road, you will find bits and pieces of yourself in the debris along the roadside but new pieces will also emerge.

Know that the gap between who you were before you encountered autism and who you are now is filled with so much growth, love, hope, strength, tears, experience, fight and resilience.

Hold onto the hope that as your child grows, matures, and increases their independence you will also discover more of who you are by doing things that you once loved. You will also discover new things that you love by taking time for you, as time becomes available and priorities are adjusted.

I am more than a caregiver and I’m working to define all that MORE encompasses.