Gina Reed-Rivera doesn’t believe that a child’s autism diagnosis is the end of a parent’s dream…it’s just the beginning of a great adventure. But she does understand, from her own experience, how frightening it is when first faced with the ASD diagnosis. So she created the Dear Autism Mama project so that mothers can help mothers get through those first days with a sense of peace and hope.
I am so intrigued by Gina’s project, Dear Autism Mama…letters of compassion, hope and joy that I am curious to find out more about it…
Gina, can you give us an overview of what project: Dear Autism Mama really is?
Project: Dear Autism Mama is a collection of letters from Autism Mamas to Autism Mamas. These letters offer compassion, hope and joy during a time when Mamas may be struggling with a new diagnosis or during difficult periods when it’s important to know that they aren’t alone in this journey.
I also believe that it’s vitally important to document our stories. Raising a child with special needs can be challenging and the feelings and emotions that go along with this journey are not always neat or pretty. Many are ashamed to say out loud that they are struggling. I wanted to create a space where it was ok to admit that this journey is both hard and rewarding. Where it is ok to have those two dichotomies exist in the same space without negating their validity or importance.
When did you launch the project and what inspired you to do so?
I launched the project in the fall of 2013. When my son was first diagnosed with PDD-NOS, I was beyond lost, scared and really did not know what the future looked like for my son or our family. We discovered our son’s diagnosis when he was hospitalized at the age of four in a pyschiatric unit. It was a terrible and lonely time for our family. It felt like the world as we knew it was ending, that our son was dissapearing. With time, we found our way, but it was a struggle and everything felt like it was changing. I couldn’t see the future anymore; I no longer knew what to expect or hope for.
When I began this project, it was with those early days in mind. How could our journey have been different if we knew that the world was not ending, that we were not alone and that there was hope? Right now there are so many parents out there, worried that their child may be on the spectrum or struggling with a new diagnosis. If we can reach those parents and let them know that many have travelled this road before them and that there is life after diagnosis- great lives!- then we’ve achieved what we set out to do. And, when parents feel supported and have a community to reach out to, they can be better caregiver’s to their children.
I should add… I’ve spent the last 20 years working with entreprenuers, bringing their products/services to market. I love start-ups, branding and marketing but my heart no longer matched the work that I was doing. I recently made the decision to leave my position as Brand & Marketing Director for the top real estate team in Oregon. I wanted to take the skills that I had developed and apply them towards making a social difference. I knew that the time was right to make this move after achieving some pretty significant goals for my real estate team. I had gotten them where they wanted to go and knew that it was time to turn that same attention towards the autism community. Plus, they say that, if you’re not completely terrified, you aren’t pushing yourself enough. I was no longer scared of the goals that I had set for myself, so it was time to up the game. And I will admit, until my business plan starts to generate income, I will be sufficiently terrified.
How many letters have you received so far?
To date, I’ve received about 20 letters.
Do you have any that stand out or have touched you in a profound way?
Each letter is beautiful and thoughtful and filled with such caring intention that I would be hard pressed to pick any one over another. One letter that really did touch me in a unique way came from a mother on the spectrum who is raising her 3 spectrum kiddos. Her perspective was unique in that she understands her kiddos in a way that many cannot or are not yet able to do. I appreciated her viewpoint and her insight. For her, having children on the spectrum was not difficult—it just was. What a beautiful perspective.
What do you hope happens with Dear Autism Mama?
I have great hope that this will continue to be my life’s focus and that I will grow these letters into a massive library of compassion, hope and joy. I would like to remove the stigma from the autism diagnosis, alter the way that autism is perceived and truly celebrate the very important perspectives that our children offer. Children from every single place on the spectrum have something unique to offer and we need to celebrate that, not fear it.
For the project itself, my long term plan is to create a non-profit foundation, raising money for scholarships that can be used to pay for treatments, communication devices, etc. I would love to see it turn into a book of letters so that we could reach even more parents. I also have a memoir somewhere in my head and eventually, I would like to share it. I’ve had a lot of challenges in my life but have found peace through my little family and this autism journey. Many think that an autism diagnosis is an end of a dream. For me and my family, autism has provided us with a very differnet way of looking at the world around us. Changing the way that I perceive the world has brought a level of peace that I never thought existed. Sharing this with my son has helped me to find a depth of compassion within myself—for both my family, our community and even myself. If everyone in the world was forced to examine their lives so closely, imagine what a beautiful place the world could be.
For the immediate future, I have a short term goal of collecting 100 letters by the end of March. It’s a crazy goal, but I believe in aiming high.
How has this project helped you?
For a very long time I knew that my life had a purpose, but that I just hadn’t figure out what the purpose was yet. When the idea for this project first came to me, it was in a round about way. I knew that I wanted to write a book, but I also needed a platform and an audience to support it. One thought led to another and I came up with this project. Ironically, the project has taken on a life of its own and I’ve tabled the book for a while so that I can focus solely on the letters.
This project has allowed me to cultivate compassion and hope, which in turn fills my soul with compassion and hope. The more that I reach out to others, the more my heart fills with joy. I truly believe that what you focus on expands; I would love to see this compassion and hope expand to every corner of the world.
Has it had any impact on your son?
My son is very interested in the project. He knows that he is on the spectrum and is learning about himself as he grows. This project has helped normalize autism in our home and has removed any stigma that it may have had. My son is proud of his diagnosis. In our home, autism is something to be celebrated. He feels very loved and supported.
My son has also benefited from the large community that has grown out of this. The autism community is so strong and supportive and an infinite wealth of resources. There is no shortage of knowledge when it comes to therapies, medications, creative IEP ideas, and ways to connect with your child. I have learned so much from this supportive group; you could say that this is my way of giving back.
What action(s) would you like someone to take after reading this interview?
Everyone who is caring for a child on the spectrum (whether officially diagnosed or not) has a letter within them. I encourage Mamas (or Papas or Grandparents) to write the letter that they wish someone had written to them. Whether you are in the very beginnings of this journey or have adult children on the spectrum, something that you have to say will resonate with others. No matter who you are, there is an audience for what you have to say. There are parents who need to hear your words. It doesn’t matter that you may not be a writer, or that there will be typos or misspelled words. Those can be edited but every letter deserves to be shared. When people actively engage in their community, intentionally spreading compassion and hope, amazing things can happen.
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