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.

Different things to different people

The “In” in inclusion means different things to members of the same family. That is because every individual has different needs, abilities, and requirements. One common element in all the answers is the need to be accepted for the way an individual is. Inclusion should not mean that everyone should get the same treatment. Often, one size does not fit all, even amongst the children with the same diagnoses. Each of them have different talents and different emotional, psychological, and physical needs. Rather than schools focusing on bringing children with special needs at par with neurotypical kids, they should celebrate the diversity these children bring to the classroom.

The Kind of Inclusion

Reeyah might not know how to recognize the alphabet and numbers like a typical 4-year-old. However, her emotional intelligence and empathy leave us awestruck. Reeyah will be starting school this year. While I know that she will learn to be academically competitive from her typical classmates, I also hope that they see her beyond her diagnoses. I hope that just the way she has taught our family how to enjoy life to the fullest. To find joy in small things, forgive graciously, and love unconditionally, her kindness inspires others around her. I hope that her lack of physical strength is not perceived as a weakness in the playground; rather, her determination and self-belief to keep trying are noticed. This is the kind of inclusion that is needed in society.

Representation is Inclusion

I think that we have already come so far with how individuals with Down Syndrome are represented in society. My heart gets full of hope when I see models and actors being the face of big brands like Adidas and Victoria’s Secret. Representation is inclusion. The change in the standards of beauty created by society is inclusion. We do not know any other person with Down Syndrome in our family or friends. This is the only way my husband and I see what the future of our daughter might look like. And looking at these talented people on screen, billboards, and sports competitions like the Olympics gives us so much hope.

From the country we come from, children with special needs do not get the proper to fully utilize their strengths. That is the reason why we decided to move to Canada. There has not been a single day that we have regretted our decision. Canada has given us the hope that Reeyah can get the best therapies, an opportunity to secure a job for herself, live independently, and find love, even when her parents are not around. The lack of education and awareness in our home country made all this impossible to envision.

21st March marks World’s Down Syndrome Day, on which we celebrate these beautiful people around us. I hope that every new parent receiving the diagnosis of their child with Down Syndrome receives it with a “congratulations.” I hope that rather than trying to make them fit into our world, we try getting to know what it is like to be in their world as well. I hope that the “In” in your inclusion is not limited to letting them “in” your world, but to let yourself take a step “in” their world as well. Lastly, I hope that every family gets a chance to know at least one person with Down Syndrome because only the people who do, know what being loved and accepted unconditionally means. Every person deserves that.

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