You Need This Book In Your Life…

Forever Boy is officially out today!!!

Forever Boy by Kate Swenson may appear on the surface to be the story of a Mom with an autistic child. But, it is so much more than that!

It is the inspiring story of a Mom navigating an autism diagnosis, seeking supports, inclusion and education for her child, while also navigating motherhood, marriage, relationships, personal struggle, sorrow, hope and joy.

Kate and her son Cooper are an amazing example of a great unconditional love between a mother and her child.

The world needed this book and so did so many moms, families and caregivers. Kate’s memoir is the validation of so many unspoken battles that families face when trying to get the supports and services that their autistic loved ones need and deserve.

This must read-can’t put it down-page turner will leave you feeling seen, heard and rejuvenated to push forward to find the hope and joy in your own struggles and journey.

Whether you are a parent, friend, family member, or professional who wants to learn more and understand both the internal and external challenges of raising a child with autism….Forever Boy has something for everyone!

Thank you Kate for showing us we are not alone, and for your willingness to bravely sit in the dark with so many on similar paths.

5 Things You Need to Know About Autism:

My son Stalen was diagnosed on the autism spectrum when he was 21 months old. He is now almost 7 and non-verbal. He is also pretty amazing!

Here are 5 things that I’ve learned from being his side kick on this wild ride, that I want to share:

  1. Autism is neurological. It is NOT physical or intellectual. There is no look to being autistic. Autistic individuals are quite intelligent and capable. They just see the world differently than we do.
  2. There is no right or wrong way to perform a task, or reach a desired goal or outcome. Instead there are many ways. My son may communicate differently than you with the support of a device but he is just as capable. He may also require additional supports but that does not affect his worth or value as a human being. If nothing else, it shows his immeasurable determination and fight, please don’t try to stand in front of that.
  3. My son wants to be accepted, loved and included just like everyone else. He wants to be active and involved in the community free from judgement and discrimination. He needs to be himself free from consequence. Please don’t invite him to the table and expect him to be like everyone else.
  4. Meltdowns are not tantrums. Meltdowns are not a sign of always getting one’s way. Meltdowns are hard moments, signs of an individual trying to cope with an overwhelming world. Please be kind. Please don’t stare. Please don’t judge what you may not understand.
  5. Autism is just one of the many pieces that contributes to the make-up of my amazing son. It does not solely define him as a person or define his life. There is no formula for a life well lived.

We choose everyday to live by embracing differences, kindness, understanding, unconditional love, adventure, laughter, hope and faith.

We always choose to believe in miracles, the power of yet and the goodness of others.

We share our story to inspire, educate and make this world a better place for Stalen and so many others.

World Autism Awareness Day

World Autism Awareness Day is on Saturday, April 2. It is a day to raise awareness and celebrate all the amazing autistics that we know.

Each year, Stalen chooses what color our family will wear to celebrate him.

This year, like many others, he has chosen his favorite color.

Please join us on Saturday April 02 by wearing blue to celebrate Stalen and all those living with autism.

We would love to see your pictures in blue 💙

Living in the Unfamiliar

10 Tips to Help Parents Navigate the Medical World with their Medically Complex Child.

  1. Just Breathe
    It is very overwhelming to be thrust into the medical world and the bottomless pit of responsibility for meeting and caring for your child’s complex needs. Your trying to come to terms with your child’s medical challenges and the implications of those challenges on their daily life, you, and your family. It’s okay to be upset, it’s okay to ask why my child? Things will get better as you learn to navigate this new world, you will learn all the things, and you will have faith and hope in your child’s medical team and treatment plan as you see your child improving, progressing and happy.
  2. Knowledge is Power
    Make a list of what you need to know. Research your child’s condition. Watch videos of the medical procedures. Keep a list of questions on your phone and add to it as one arises. Learn all the equipment and how it works. There is much fear in the unknown but you will feel more confident and comfortable as you ask and learn.
  3. Explain to your child
    Use age appropriate information to explain to your child their medical condition and care procedures that will be required at home. You can do this by creating social stories or performing the procedure on a Teddy bear, allowing your child to touch the syringe/feel a bandage and stick a bandage on their teddy bear. Don’t make it too complicated but by providing information and answering questions you will give your child a sense of predictability about what is going to happen to them instead of them being scared.
  4. Maintain Individual and Family Routines
    It’s healthy for your entire family to maintain healthy, consistent routines as much as possible. It may take some time to determine what new routines will look like and how existing routines will be affected. Even the simple routines of sleep, meal time, playing can promote development and reduce stress. Family dinners, game nights, consistent bed time, spending time together as a family -are all necessary routines to consider. While you can’t control the medical condition or what your child is going through, you can control how your react to it. It is critical to create some calm amidst the chaos.
  5. Advocate
    Do not be afraid to advocate for your child and what he/she needs. Do not be afraid to share information that may make hospital admittances and procedures easier for your child. For example, Stalen does best getting blood work while sitting in his stroller. He is most comfortable there. When he is being admitted to hospital I always ask that he be put on the quietest area of the floor away from the kitchen, lounge, and nurses station because hearing lots of noises will expedite his anxiety and keep him up at night.
    You know your child best, believe in that!!!!
  6. Get Organized
    Organization is key to managing your child’s daily care routines. Things are very dynamic, fast paced and change quickly. It’s important to have phone numbers in one place, a bag packed for the hospital, and gas in your car. It’s also important to have all your supplies and paperwork organized and in one place. Lists and set reminders can help you adjust to new routines and schedules.
  7. Find Your People
    Assemble the best team for your child. Don’t forget about other important players like your pharmacy, insurance company and medical supplies supplier. It’s important to know what is covered, how long it takes for supplies to arrive and a friend at the pharmacy, can help make your life easier. It’s also of high priority to have someone who can administer the meds and perform medical procedures when you are injured or ill.
  8. Find the Joy
    This may not be the life you imagined or dreamed of, but it’s still your life and you only get one. Try to find the joy in every day even if you have to look really hard to find it. By adding more joy to your daily routine, you may enhance your overall well being. It’s also important to create joy for your child and family. Take time to do things that you all enjoy.
  9. Don’t Forget About YOU
    While you may not have slept well in months and are trying to figure this all out, you need to take care of yourself so you can care for your child. Self-care can be a relaxing bath when your child is settled for the night, reading a book between administering doses of meds, fresh air from a quick 10 minute walk around the block, sleeping in one morning a week, a massage or hair appointment, an early morning workout. Find an activity that helps you relax. You will regret it months down the road, if you do not include your own health & wellness in your priorities. Your worth it!!!
  10. Support
    Find other people who understand your struggles because theirs are similar. Online or in person support groups, Facebook communities, and other parents who are walking a similar path with their child are huge. All do these can be a significant lifeline and incredible support system for you because they truly understand and get it.

Remember, you and your child can do hard things. Together, you will be unstoppable.

Find your footing in this new world and don’t look back.

Feeding Challenges

Stalen will soon be getting his gtube (feeding tube).

Stalen has had feeding problems his entire life. When he was just a couple of months old, he was referred to a dietician because he was eating excessively and plotting his own line trending upwards off the growth chart. Then he couldn’t handle textures or even touching foods.

I still continue to feed him because his calorie intake is low and we need every bite to count.

Surgery for a feeding tube is quite common. I’m not sure how common it is for a child who is almost 7 years old to require one. But, here we are….

Feeding has always been a struggle and I’m proud of Stalen for always trying with feeding. We really were able to avoid a feeding tube for all these years because we tried and never gave up.

I am also proud of myself for always pushing for more for Stalen and following my intuition and trusting in how well I know him. We have had our share of critics and unsolicited advice around feeding over the years. But, I always knew Stalen’s challenges were more than we could understand. I’ve made more trips to the doctor and visits to the dietician in seeking advice and answers for Stalen. I’ve often felt like I was just spinning in circles because we tried soooo many things, with little to no success and then I would take him back again. I even paid out of pocket to consult with a pediatric feeding specialist outside of Canada.

Over the years I’ve heard….

He just needs discipline
He will eat when he’s hungry
Drop him off and I’ll get him to eat
Your letting him do what he wants
Many new mothers have these problems
Just leave food sitting out for him
It’s normal for kids to not eat much
You need to sit him down and make him eat
Not eating any meals for 16 days is no big deal.
He’s spoiled.
He’s just picky and you allow it.

…And these were just the things that were said to my face.

Today we know that Stalen’s feeding challenges are more and require medical intervention.

I’m sharing this because I want others to know that if you believe that something isn’t right with your child, continue to push for answers and advocate for their needs.

You know your child best.

No matter what anyone else thinks…
No matter what anyone else says…
No matter what.

Accessible Shopping

We (myself and many others) have been asking for a Caroline’s cart at our local Walmart and Costco since 2019.

Many of these stores have accessibility policies, yet there stores are not really accessible for families like mine.

My son is almost 7, he is autistic and non-speaking. He has no sense of safety and elopes. He doesn’t fit in the top of the cart like a young child. I’m not sure what we will do when he outgrows the cart.

Many times I go to the store without him but sometimes he has to come with me. Sometimes he chooses a present for a family member or friend. Sometime he needs to try on boots before we buy them.

Always, he deserves to go out and participate in the community like everyone else.

A Caroline’s Cart would allow my son to be safe and secure in a seat attached to the cart and there’s still cart room for items to be purchased. These carts don’t cost thousands of dollars either, they actually cost less than a thousand.

Please sign and share our petition, regardless of where you are located.

https://chng.it/RdgNDsKr

This is hardly safe, inclusive or accessible shopping…

His World View….

I love how this kid sees the world. While I don’t know the totality of his entire world view. I can tell you what I see…

A little boy who rises to every challenge while smiling. Quite simply, he loves life and it loves him right back.

A little boy who doesn’t care if you stare, if you say something rude, if you misunderstand his disabilities….he greets that misunderstanding with smiles and unconditional love.

A little boy who loves people that he doesn’t even know, because love is all that he knows.

A little boy who is fuelled by simplicity and seeks a connection of the heart over everything else.

A little boy who already grasps that happiness begins with yourself. A lesson that many of us strive our entire lives to learn and understand.

A little boy who will spin, giggle, walk backwards, close his eyes while walking and always moves in a wicked, wild, zig zag formation.

A little boy who makes the world better, more authentic because of his genuine kindness, more affable with his love, and brighter with his smile.

A little boy who may not be little forever, but a boy who will undoubtedly leave his mark on the world and all those who he encounters.

My boy, keep being you and continue to see the world just as you do through those big, beautiful blue eyes.

Learning to Fly

Sometimes you have to take a leap of faith….

Yesterday I had to get 4 items at the grocery store. I decided to bring Stalen with me and have him free moving without a Caroline’s cart and without any expectations.

It was a workout but he did so well. He only tried to run off twice and he was quite interested in what others had in their carts. 😂

He helped me bag the green pepper. He lifted the bananas in the cart. He pushed the cart for a couple of seconds to see what it was like.

Everyone deserves to have opportunities to learn and grow. Everyone deserves opportunities to be active and involved in their communities.

For us it’s about progress over perfection. Next time we will try to go for 5 items.

Leaps of faith are important because they help you push past limits and try new things.

They help you build independence.

Until you spread your wings, you will have no idea how far you can fly.

My boy loves to fly.

It’s Coming, April 5th

In 2017, Stalen was 21 months old and was diagnosed with autism. I didn’t have it all together. I was like a fish out of water. There was so much I didn’t know, so many worries, so many fears. What do you do first?

I stumbled across this page on Facebook called Finding Cooper’s Voice. The first video I watched was this Mom, Kate, crying in her car. It resonated with me because I knew there was at least one other person in the world who was feeling and struggling just like I was. Although worlds apart, we were together in trying to do everything we could for our autistic sons.

My friend Kate, has selflessly shared her family with the world, while enduring all the criticism and judgement that comes with that.

Her family is a fun loving and wild bunch. The kind of family that you meet and you want to be friends with. Her son Cooper is autistic and loves trains. He has two amazing younger brothers, Sawyer and Harbor. Sawyer loves hockey and Harbie is all about monster jam. They have a beautiful baby sister named Wynnie. Their Dad Jamie, is a grill master and fishing enthusiast.

My friend Kate is brave and strong. Every day she wakes up and does her very best for all of her children. She has also been a lifeline for so many. Not only has she made so many feel like they are not alone, but she has shone a bright light on autism….acceptance, understanding, inclusion and so many other topics that are important to families with an autistic loved one.

It is because of Kate and Finding Cooper’s Voice that I decided to start sharing Stalen’s journey. It is also through her writing that I realized that I needed to find the joy in every day, instead of focusing on the negative.

I am thrilled to support Kate as she prepares to launch her book in April. Forever Boy is going to be amazing. I have pre-ordered a copy and you can reserve yours on Amazon. #ForeverBoy #getyours