Onward and upward!

Thank you for being part of our journey these 3 years! We've so appreciated all your kind words and visits. Onward and upward with our journey!

Monday, May 20, 2013

A Dark Cloud in the Garden

Dear My Toy Garden friends,
She was angry with me. Very angry and told me so very clearly. Perhaps this has happened to you. You check your email and waiting for you there is a verbal bomb ready to explode. That was the case for me last week at My Toy Garden. In support of Autism Awareness/Autism Action Month, I posted a comment on our Facebook page about autism. This is a topic I am very passionate about and wanted to write about anyway this week. I invite you to read her email below and my reply. Along the way you will learn my thoughts on the autism challenges we face as well as two other lessons I invite you to ponder this week as you read. If you have time for nothing else this week, I invite you to at a minimum please scroll down and watch the included video. 
1) Sometimes you have to respectfully stand up for what you believe in and engage others in conversation about it. It is a wonderful thing to disagree with one another. It is only through difficult conversations like the one below that both sides can grow in understanding of one another and themselves. Moving thoughtlessly and carefree through your days does no one any good in the long run. Conversations like this is a huge part of why I opened My Toy Garden. I applaud the writer of this email for writing me and respectfully sharing her frustrations and giving us the chance to talk. 

2) Anger can be a very good thing. This customer was and perhaps is still very angry with me. I know there have been times I've been very angry myself about something. In handsight, I know those have been some of my greatest growth moments. Sometimes we have to get angry to change our thoughts and therefore our actions and sometimes the second look it gives us, further cements our beliefs. Both can be good things. When someone is angry with you, try to see beyond the surface of the anger to the heart of the person and seek to understand. I wish you growth this week and look forward to more conversations with you!
The Email
"Hello. I was one of the commenters on your Facebook post yesterday about Autism Awareness. I have since removed my post and unfollowed your page, but I also feel compelled to tell you why I chose to do so.
When you use language about how autism prevention is necessary, you are being hurtful to autistic people. When you provide a link that is devoted to eradicating autism, your are spreading the myth that autistic people's lives are not worth as much as neurotypical people's lives. When that same link suggests ways to "cure" your child from autism, you are suggesting that our children's lives are not complete because of their autism. When you continue to comment as part of the discussion that we need to slow or eventually reverse the number of children being diagnosed with autism, you once again confirm the idea that there is something inherently wrong with being autistic.
There is no cure for autism. Autism is not a disease; it is a neurological condition. The only proven effective treatment for autism is ABA Therapy. Biomedical treatments have simply not been proven effective.
When my boys were diagnosed with autism this past year, I did put them on the gluten/casein free diet. I tried the supplements. They were not cured or improved by any of these methods. I have met several parents who swear by the biomedical treatments, but what I did with my children is just the tip of the iceberg. After diet and supplements, you are to eliminate all fruit. Then you start the antifungal treatments. Then the chelation treatments. Then the enemas. Then the hyberbaric oxygen therapy. The options are endless. Yet these children are still autistic.
I can only speak from my own experience, but I can tell you that these desperate mothers and fathers that you and I have met are not in need of a cure for their children. They are in need of a more accepting and inviting world to live in. There is nothing wrong with my children. They are wonderful, sweet, bright, loving little boys who have done nothing to deserve the world's backlash against their neurological condition that is ingrained in who they are. There is no removing of autism from them. There is no cure for this. There is no need to find a cure. Autistic people are not new. They are not a creation of vaccines or the government not caring. They've always been here, and there's a whole host of autistic adults who are self advocating and calling for our society to accept them. My children are not burdens; they are not to be pitied. I do not need sympathy from others for parenting autistic children. I just need people to understand that everyone is different. Everyone has challenges.
And to tell me that I need to work on a cure for my children is akin to telling me that you don't accept my children. To write that we need to reduce the number of autistic children is akin to telling me that you don't want my children to exist. Your language and thinking is hurtful.
Since learning more about autism, I have been made aware of the prejudice against autistic individuals. I see the comments people write online. I feel the blame people put on me for creating autistic children. And I know that my boys will also be discriminated against because of their neurological differences. That breaks my heart. No person should ever be made to feel like they are "less than." No person should feel shame for just existing, for being different. We don't have an autism crisis on our hands; we have an empathy crisis by our world.
I have no intention of changing your mind or thinking on this topic. I simply had to share my story, and why I don't feel comfortable buying from your shop anymore. This world would be a better place if we stop thinking that our way of being is the only way of being. I was able to fully accept my children once I stopped trying to make them into what I thought they needed to be. I simply needed to learn their language, and what they have to say is absolutely beautiful. Thank you for your time."
My Reply 
"Thank you so much for your heartfelt email today. I always appreciate knowing the thoughts of the My Toy Garden customers. I created this store for just such conversations. The staff and I often say that the least of what we do is sell toys. My heart is to make a difference in the community however I can and I believe conversations about difficult topics like this where there are such strong feelings on both sides are important. So, thank you sincerely for opening your heart and putting it into words.
I am very sorry that my words made you feel that I feel any negativity at all towards your children or others with special needs. That would never ever be my intention. I have spent my entire career working alongside families of all types. I was a classroom teacher for 17 years teaching everything from preschool to 8th grade. I always had the "challenging" class because principals quickly knew that I would love every child who came into my class no matter what joys or challenges they brought with them. I've had the complete honor to work with many children on the spectrum and their families over the years. I was also a leader with Discovery Toys for many years and spent hundreds of hours in living rooms and at conferences working with all sorts of families as well. I have been there many times through the initial puzzling of the pieces, through the testing, the diagnosis, and the processing afterwards of what is best for this particular child and family..through the tears and fears and joys and celebrations over the tiniest of things. I feel that in each and every case I looked at the wonderful things in each child and lifted them up as well as identified the challenges and did everything in my power to lift those up as well. So, for you to feel that I, in any way, had any negative intent in my words grieves me. I do apologize for that.
One area we have different opinions on is what can and should be done to support those on this journey. Through my years I have seen so many things including many true miracles. I have seen families who have seen their children change dramatically before their eyes....children who have lost all speech, all communication, lost most of who they were and in the parent's words "become a shell of a child." I've seen many of those same families through sheer determination and lots of education reverse the situation. I've seen those same children regain their speech, regain their communication, regain their cognitive processing, regain their fine and gross motor skills, regain their lives again. I've seen it with my very eyes more than once. I know with every fiber of my being that it is possible. Easy? No. Painstakingly slow? Yes. Different for every child. Absolutely. But I do believe there is a mountain of things we can do to prevent more children from beginning this journey and a mountain of things we can do to create a future for others already on the path than can make their life a bit easier. Does this mean in any way that I do not absolutely believe in celebrating each child as they are? Emphatically not. Every human being is to be loved for who they are. And with love, if there were even the slightest possibility of making life easier for them, why wouldn't we pursue it and learn more? My Toy Garden proudly partners with TACA...Talk About Curing Autism. They have done so much good for so many and I'm glad to do whatever I can to support them in the important work they do. I invite you to watch this video from their website. I think you will find it interesting. There website is a treasure trove of support for everyone who wants to know more about autism.
I am sorry that you choose to take your post down from the My Toy Garden Facebook page. You had some wonderful comments to add to the conversation. I would invite you to rejoin the conversations so that others may learn from you and you from them. I sincerely do hope that we can continue the conversation as well. I would love for you to return to My Toy Garden so we can grow together. Peace be with you. "
Toylady Janet

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