The Puzzle Piece

We spent nearly a century fighting to identify Autism. To give it a name and identify features that could be jotted down, then studied and observed. The symbolism of the puzzle piece is now used to illustrate the growing understanding of the bigger picture that is Autism. From this picture, the identifiable diagnosis, we birthed ‘Autism Awareness.’ 

We now have a description, an identity that we can use to educate the greater population, and a title we can campaign behind collectively. In short, we can make the general population aware of the existence of Autism. 

This awareness led to better understanding. This understanding provides a sense of the therapies and accommodations needed, based on compassion and empathy for the human experience, guiding us slowly to acceptance.  

Educating the world

I believe we’re in this phase right now with Autism Awareness. Special Needs parents are tasked with helping our children understand themselves and educating the world of Autistic children’s individual needs. We are desperately pulling at the compassion and empathetic heartstrings of humanity’s better nature to understand our children’s needs and understand that their experience is the human experience too.

The more we know, the more it hurts

If you are not lovingly parenting a child with Autism or a profound disability, you will not understand. But the longer we have been on this path of awareness and acceptance, the more we acutely and painfully realize that society, no matter where you look, prioritizes and values able-bodied individuals—those who are economically profitable.  

Sadly, it’s more economically advantageous to society for us parents to be reduced to advocating for our children’s needs as adults well after our own bodies age and fail them as caregivers.

Age with dignity?

I began a journey advocating for the National Disability Strategy in hopes of bridging funding gaps, supports, and resources so that my children and every child with a disability and their parents and caregivers can age with dignity. We deserve to live fearlessly and with confidence, knowing that disabled individuals will not starve, will not be impoverished, living in dehumanizing conditions should they be unable to be financially and functionally independent.

Through this work, I realized that the ‘selling point’ of a National Disability Strategy wasn’t based on the value of these precious lives. It is not based on immeasurable love for a fellow human but instead on the economic benefits of doing what is morally and ethically right. The harsh reality that the blessing of my children gets turned into a mere dollar amount has shattered my heart. And will shatter the hearts of every parent and caregiver on this journey. 

Shattered

Let’s be clear; it is not our children’s diagnosis or their struggles that shatters us; it is the reality that our society does not properly value their existence. The heartbreaking thought is that our love is not enough to keep them safe, alive, and happy when we are no longer here to protect them. It is a painful realization that our children’s humanity is not valued, that shatters us, and I hope it shatters you too. 

I hope that this awareness stirs you.

Be aware of all the love you feel for your child, your brother, your sister… your fellow human; how it guides you to want them to be safe, happy, and healthy. Think about how dehumanizing and heartbreaking it would be to quantify the value of their existence and their profitability. Now use it as a means to negotiate their future safety, health, and happiness. It’s incomprehensible, and it’s the reality of so many families. 

Our children are beautiful, strong, resilient, kind, compassionate, unique in every imaginable way; above all, they are humans. They are bursting with human emotions; joy, pain, relief, fear & love, just as you and I do. And they are aging just as quickly.  

The weight of time

Many parents are at the beginning of their parenting journey. They have time to educate on the awareness required for the accommodation and acceptance of our children. Sadly, many of us are further along the parenting journey. The weight and lack of time to teach awareness that values humans, not for their economic profitability, but for their simple human existence, is building a pressure deep within us that is suffocating.  

Surface Pressure

When Disney’s new movie, Encanto, came out and the song ‘Surface Pressure’ was heard by millions. It’s safe to say that for parents raising children with Autism, our tears flowed with the relatability of that pressure. This surface pressure is what we feel about advocating for our children to have the opportunity to thrive. This pressure is even heavier for us as we must change the world’s values to be human-centered instead of profit-centered. These pressures are robbing us of enjoying simple pleasures and relaxation.  

Which leads me to my one ‘ask’ this Autism Awareness Month: 

See the value of my children for the worth of their humanity and not their economic profitability. Join us and advocate from a place of love. Be sold on the love that one human gives to another. Be sold on the need for a safety net that will catch them when us parents can no longer provide or care for them. Be sold on the dignity of aging for all of us. Be sold on the value of the human experience. 

In short, love my children too.

The post Autism Awareness; The Reality I Wish You Were Really Aware Of appeared first on The Mabelhood.

Sensory play is becoming very popular and with reason.  It is now part of our everyday life. When we got pregnant, I had no idea how it would play a vital role in our daughter’s development.  Nor did I expect all the challenges that would be presented to us along the way.

It all started with Autism

I’ll remember that day forever.  It was November 21, 2019 – a cold rainy day.  We were sitting in the pediatrician’s office, sharing multiple reports we had received from our speech therapist, our occupational therapist and our daycare.  They were all pointing to mild-to-severe delays as well as high sensory sensitivities.  After discussing many of our concerns, she could deliver her diagnosis. Without a doubt, our daughter was indeed on the autism spectrum.  It was now official.

Even if I had a strong suspicion for months, it still hit me like a ton of bricks.  I remember how the whole room stopped moving and I could only hear half of what she was telling us. It hit hard for both of us.  We cried all the way home. We felt so lost and overwhelmed by everything. We felt scared by the unknowns of her future. I remember feeling like “Ok, where do we go from here?”. 

Why I suspected Autism early on

My concerns started around 13 months when I noticed that my daughter wasn’t smiling on pictures.  She would often wake up at night and I couldn’t cuddle her back to sleep.  The only way to calm her down was 10 minutes of cartoons.  I would put her back to bed and cry myself to sleep, wondering why I couldn’t comfort my own child.

Developmental milestone delays were also signs.  She was babbling and was saying “ma-ma” by 14 months.  Then she regressed at 18 months and never said mama again.  That’s when I knew I had to act on my instincts.  She had just started walking at 18 months.  Delayed walking is another very common sign.

She had high sensory sensitivities to sounds, sunlight, and movements.  She hated any activities or toys that was unstable like ride-on toys.  She was also showing delays in her gross motor skills.  When she was a newborn I was told that I had a high needs baby.  She needed to be held a lot and would cry often.  Looking back, we had many signs from a very young age.

It has now been well over a year and I can tell you this.    We have been blessed with such a happy little girl who lights up our world.   I still have fears, I still worry, I still think “Where do we go from here?”  If you are going through this, I want you to know what you are feeling is normal.  You are normal.  I’m assuming I will feel this way forever, for different reasons, as it evolves.  I also want to tell you that Autism has also been a blessing.

We have learned so much about her, about us.  We now have a deeper compassion for all families on a similar journey.  It opened our hearts to feelings we never knew we could feel.  Best of all, it reminded us to remain in the present moment. I’ll be honest it was hard for me to process all the feelings I felt.  I cried every day for almost 2 months after her diagnosis. I was nearing an emotional burnout. 

By chance or faith, I was inspired to create an outlet for my feelings, to focus on the good and not just on our challenges. In January 2020, I launched a Facebook page called Fun Sensory Play and I call it my saving grace.  It saved me in ways I never imagined and it has helped others more than I ever thought it would.

Why is play important for kids on the Autism spectrum?

Our family became very focused on play.  I discovered through various therapies, books and education that PLAY is the best tool for kids on the spectrum.  I like to say that play is the way to your child’s heart.  Through play they can engage and interact with the world around them.  This is so important for kids on the spectrum as it is a common challenge.  Once you have their attention, it creates a connection which makes it much easier to teach your child.  Playing doesn’t feel like “work” – playing is fun and that’s how kids learn best.

We do our best to bring play in every activity and daily routines, as we now understand how beneficial it is for our daughter’s development.   When I’m in a rush to get out the door, I’ll admit that play is the last thing on my mind. I had to train myself to take life a little less seriously and be in the present moment with my daughter.  That’s another reason why autism is a blessing.  We are more connected to her and to each other as a family.

How Sensory Play helped our daughter

Our natural reaction was to avoid all situations that made her cry, scream or afraid.
We didn’t know that avoiding what would create a sensory reaction (meltdowns, hysteria, crying etc.) was the wrong thing to do.  It is human nature to protect your child from anything that may hurt or cause them any kind of pain.  But we weren’t doing her a favor by doing so. 

With sensory sensitivities, we learned that you have to slowly desensitize them to the feeling or sensation they dislike.  So for my daughter, we had to keep initiating sensory play with play dough even if she resisted the sensation.  She would ask us to play with it, mold it for her but she would rarely touch it. Sometimes she would poke it, but nothing more.  Today, she squeezes the play dough.  She loves it and I’m so proud to see her enjoying this activity.  Here’s a taste-safe play dough you can make at home.

She was also sensitive to the texture of sand.   Again, we repeatedly provided opportunities for her to explore the experience and sensations.  We tested various textures and found that she really enjoyed to play with oats.  I created simple sensory bins with oats with little scoops and cups.  All toddlers love to pour and dump!  

I then tried a taste-safe sand made with crushed cheerios and it was a total hit!  She loved it.  Find the instructions to make it here Edible Play Sand.  It wasn’t the full texture of sand but it was similar.  We were on our way!  As you may see, we were presenting incremental activities that would lead her to enjoy the feeling of sand.  Fast forward to today, she now enjoys playing with sand.  Success!

If your child is struggling with various sensory sensitivities, the key is to repeat the activity in hopes that your child will adjust to the sensation. We were also struggling with the idea of “messy”.  Through this journey, we’ve learned to accept the mess and jump in to play. Sensory play is good for grown-ups too!

Sensory play is a true gift to any child’s development, and I encourage you to provide them with as many experiences as you can.  It can also be very calming for kids, as it helps them regulate any discomforts they may be feeling.  It’s been a blessing to see our daughter bloom through all the sensory experiences.  I hope it can do the same for your child.

About the Author:
Chantal is the founder of the blog Fun Sensory Play which was inspired by her daughter’s journey with Autism. Through her blog and online presence, she hopes to inspire more families to play. 

The post How Sensory Play Helped My Toddler on the Autism Spectrum appeared first on The Mabelhood.