Noah Bear

Stalen and I want to share one of our new favorites, “Noah Bear” by Dave Lawrence. We had so much fun reading about a day in the life of a young bear with autism. Stalen smiled when he realized that he and Noah Bear have lots in common. I know he enjoyed reading about a character just like him.

This book is a gem! Its sweet rhymes make it fun for the beginning reader or for the whole family to read aloud.

The story of Noah Bear is insightful and can be appreciated by readers of all ages. It teaches us about many of the misunderstood behaviours and challenges that come with autism, which often overshadow the kind, caring and good intentions of an autistic trying to deal with the world.

Stalen and I highly recommend this book as a story to teach everyone about autism and the importance of embracing and celebrating our differences. We are also happy to support a local author and look forward to more adventures of Noah Bear!!!

You can find Noah Bear on Amazon! #noahbear #autismawareness

Bunny Cake Tradition

The bunny cake tradition….

I’m not really sure why I started this tradition. At first I thought it was a fun way to show Stalen’s physical growth year over year.

But, now I know that it was so much more than that.

The bunny cake has become a concrete example of hope and effort.

Each Easter I buy a bunny cake for a little boy who doesn’t eat cake. He has a very limited diet which only includes eggs, a baby purée and g-tube feeds.

It’s not a symbol of what he can’t do but it’s a symbol of hope for what he may do one day.

Some day I know he’s gonna want to taste the cake but each year we will try again until HE decides that he’s ready.

Each year I will provide the cake and he will make that choice. I will follow his lead.

When and if he decides he wants some bunny cake, I will be ready. I’m always preparing for those “you never know” and “just in case” moments.

As a parent to an autistic child, I have learned that this journey is one of lots of hope and effort.

It is these two ingredients that have watered the seeds for the greatest growth.

I will always continue to hope and put forth the effort because progress never comes from just standing still and great things take time.

While the photos may show a physically growing boy, they don’t show all the other areas of him that are experiencing growth too.

There’s also a Mama behind the camera that’s growing every day as she learns more and more about her boy and how he sees the world.

Each year with renewed hope we look forward to the bunny cake tradition! 🐰

What does Autism Awareness/Acceptance mean to me?

Recently I took my autistic son to our local emergency room. He wore his wireless headphones just like he does everywhere we go. Throughout our visit, several healthcare workers attempted to speak with him. They did not know that he was non-speaking. In those moments, I had a choice to make…to just go with it or to tell them that my son was autistic and non-speaking.

I’m not going to lie, sometimes it is draining to explain to people over and over that my son is amazing and autistic. Sometimes I’m tempted to just go the easy route. Sometimes when he doesn’t respond and they say, “he must have his headphones too loud and can’t hear me”, I want to nod in agreement. But, nodding in agreement is not going to change the world for my son or create autism awareness.

When I tell people that my son is autistic I can gauge their level of autism awareness. Some continue talking to him as if it doesn’t matter, some become awkward and act embarrassed, and others can’t get away from us fast enough.

Conversations need to happen so that we can open hearts and minds to autism. It is a person to be loved, not a diagnosis to be feared.

We live in a world with a foundation and systems that were built upon the ideology of sameness, that people are similar, hit the same milestones and see the world through the same lens. Autistic individuals like my son, see the world through a different lens.

To me autism awareness means sharing our stories and experiences to educate and inform others about autism. By doing so, people develop a better understanding of autism.

Autism awareness and acceptance means someone sees my son flapping his hands and stimming and they recognize that he is autistic. Instead of thinking that his stimming is weird they think he has a great smile or nice eyes. When people are autism aware, my son’s autism is visible but not the focus of his presence. These people see beyond his autism.

Each and every time I have the opportunity to share and educate someone about autism, I take it! I am committed to trying to make the world better for my son, so he has a brighter future filled with understanding and kindness from others. No one ever changed the world by remaining silent or nodding in agreement.

My Sunshine Boy

Choose joy.
Choose happy.
Choose to shine.

I don’t know many people who have such an appreciation and love for the feel of the wind on their face. Most people scoff at the wind and how it may be cold, mess up their hair or blow things away.

This picture is the epitome of joy.

I believe that there are some special people walking this earth that are filled with such joy for life, that it shines from them and radiates around others. The purpose of these special people is not the things that they will do in their lifetime, but the lives that they will touch. They touch others not through words or action, but rather through how they choose to live. They choose happiness and joy, appreciate simplicity and see beauty in everything even beyond the surface.

My sunshine boy is like this….

He sees and feels the world with his whole heart. He lives joy every day. When joy doesn’t exist he creates his own.

I aspire to be more like him.

Happy Birthday Stalen

Seven AMAZING years…💙💙💙💙

Happy 7th Birthday to our sweet, handsome blue eyed, smiling boy. He amazes us everyday with his strength, fighting spirit and huge personality. He wakes up everyday happy, smiling and makes our days so much brighter and happier. He loves life, Youtube, fruit explosion muffins, music and his Beats headphones. He is truly loved beyond measure by his family, friends and everyone who meets him.

I can’t wait to experience the adventures, love, laughter and successes of his 7th year with him. I am so blessed and so very proud to be his Mama.

My wishes for his 7th year is that he continues to shine his bright light out into the world by being his true, authentic self; that he knows he is loved for the amazing boy that he is; that he continues to spread his wings and increase his independence; that he settles into school; that his health continues to improve; and that he follows his heart in all that he does.

Stalen…
you are amazing,
you are capable,
you are loved.

Keep being you, kid.

Happy Birthday!
Love Mom

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.