I had hoped that my very first blog post would make its debut during the month of April. As you can see and as I remember my father would so fittingly put things “I’m a day late and a dollar short”. I struggled with what would be the very first story I would share here. Where do you start when you have a million experiences you want to share that have led you to this exact moment? In all honesty I’m taking the easy route on this first post. I’m reflecting on a piece I was asked to write just two years ago, about our personal journey with autism. Inevitably, it wasn’t used for that person’s blog, but my ever so awesome friend and fellow autism warrior mom scooped it up for her amazing charity’s blog called Puzzle Peace Now. The best part of the experience was that she asked me to add a paragraph to my write up about how I find my peace. I thought it was a great idea, but had absolutely no clue how I found my peace. Most likely that was because I had none. It really made me think about what I did for myself to be in that place of serenity when life was serving up challenges and I was surrounded by complete chaos. Little did I know that is when my search for peace began.
Much like two years ago, I desperately wanted my blog and my first story to fall during autism awareness month. I guess it is appropriate that once again I missed the month and probably for the same reasons…fear of putting it out there, wanting to make the awareness last a bit longer (past when the media gives it constant attention), and partially because being bombarded by autism awareness for a month can sometimes be too much when you are already living it every day. It’s probably one of our most important stories though because it effects of our whole family and it is essentially what brought me to this place. So, I’m reflecting on that piece I wrote on this my very first official blog post. I think it is the best place to start this new adventure and I’m so grateful to have the opportunity to share it with those of you who haven’t read it.
Thursday, July 12, 2012 (Originally posted on Puzzle Peace Now’s blog http://www.puzzlepeacenow.com/blog/2012/07/12/Darlene-G-.aspx )
I’ve always been a dreamer and a planner. All my life I dreamed of having a family. I married my best friend and was blessed with a little girl and then a little boy. My dreams of a family came to fruition. Together, my husband and I made plans for our children’s future. We tried our best to prepare for the challenges this life can serve up, never losing sight of our dreams.
What we have learned in our almost eight years of marriage is that we cannot plan for everything. We could never have been prepared for our daughter’s autism and we certainly never dreamed of it. Her diagnosis rocked us to our very core. It made our family’s future seem a little less bright and it seemed to shatter our dreams in an instant.
Our daughter was diagnosed just recently, at the age of three. She hit all her milestones and any concerns we had for her development were minor. Nothing jumped out and pointed to autism, at least no autism we knew of. We just knew she was a very special girl of great intelligence. We celebrated what made her special, but those same differences were not embraced by everyone. Friends were lost along the way. Little did we know that from the day she was born, leading up to her diagnosis, and beyond it, we were being prepared to have the best, most loving support in place. We would be surrounded by the kind of people we needed, to help us make our way through the journey ahead.
April was autism awareness month. Part of me thinks I delayed writing this piece because I didn’t want the awareness to end with the month of April and part of me feels like I delayed writing it because I wanted to be done with being bombarded about awareness after April. I also knew that sharing our personal story would be very emotional and hard for me to get through on paper. We are still very new to the world of autism and still need to educate ourselves every day. While we deal with this disorder day in and day out, most people have no clue what our autism looks like. That’s because the spectrum is so vast and there are so many faces of autism. So, we have tried to be very open on our journey of awareness so that others may be enlightened along the way. Awareness is “having knowledge of” and while we have first-hand experience with autism, too many people do not know anything about autism. Our hope is that if more people understand autism, more people will find the need to help end this growing health crisis. More people will fight to find a definitive cause and more importantly a cure for this horrible neurological disorder that robs so many of so much. Maybe even more people will treat kids like ours with the love and kindness every child deserves.
It has definitely taken a village, but our daughter’s future is shining brighter than ever! It truly is amazing what early intervention can do. She has been surrounded by the most exceptional therapists, teachers, and loving adults who care for her, consistently engage her, and who have never expected anything less than amazing things from her. She is “high-functioning” and is exceptionally smart. Her progress has been nothing short of amazing. We are excited that in the near future she will be able to be in a regular kindergarten class.
Still, most days are challenging. Often we deal with tantrums and melt downs that other parents never face. We have to become experts in behaviors and language in order to work through issues of flexibility and help our child to communicate. We still have things to work through and tons of progress to be made. The insurance headaches never go away and the bills never stop coming. It’s a daily job advocating on our daughter’s behalf, on top of our regular jobs, running a business, and doing our best to raise funds and awareness for autism causes. The rigorous daily schedule of school, therapies and activities can be exhausting for her and our whole family. Life is definitely a little more complicated and it can be extremely stressful. The worrying never ends and the tears keep flowing. You have all these dreams and hopes for your child that you feel you will never see come to life.
At the same time, we have gained so much in the wake of autism. By that I mean, autism has taught us a lot about this life. It hasn’t been a blessing or a gift. Our child is the gift. Autism is something that is just plain horrible. It causes heartbreak for our family on a daily basis and has taken away pieces of our daughter. However, autism has taught me more understanding, patience and acceptance than anything else has in my life. When faced with something that is so challenging and so life-changing, you are forced to grow in ways that you would otherwise never expect. We have bigger and even better dreams for our family that we know we can and will achieve. We’ve stopped planning so much and started living a bit more. Most importantly, there is so much love…an abundance of it! It surrounds us, supports us and lifts us up every day.
It sounds strange, but I do feel our family has found a certain peace in the wake of autism. Peace and love – what more do we need, right? Sure, we all come across challenges and negativity in this life, but surrounding ourselves with all things positive and peaceful definitely makes this reality easier to navigate. Our family’s peace is found in life’s simple pleasures. It’s in our times spent at the beach and in our little getaways. We feel it right before we start a new day and when we’ve tucked our kids in for the night. We have peace when we see their smiles, when we hear their giggles, and while we watch them play together. I find peace in painting, reading, and music. My husband finds his peace rocking out with his band. Together we enjoy peace over a great meal and a nice glass of wine (or several glasses, depending on the day). It’s not always easy, but it’s about doing our best to carve out that time for ourselves. Our peace is in knowing that our daughter is happy, that she is thriving and that she is doing and is going to do so many amazing things.
Autism is not who our daughter is, it’s what she has. It does not define her. She’s just a regular little four year old girl who loves the beach, dancing, music, piano, swimming, dress up, and of course, Disney. She could be your daughter. Yes, she is different because she has been affected by this terrible neurological disorder called autism, but if you can look beyond that you will be one of the lucky ones to discover someone exceptionally beautiful, inside and out.
My advice to all those families, like ours, who have been newly diagnosed, is simple. Plan a little less and dream a little more. Practice your patience, work on acceptance of all differences and build your awareness. Put on your armor every day and get ready for the fight of your life. You are your child’s best advocate, so stare autism square in the face and say “Bring it!” Join the fight to find the cause and a cure wherever and whenever you can. Remember that you’re not alone. Your community is here to support you. Surround yourself with peace, love and positive people. We may be living with autism now, but I truly believe that in the end, love will conquer all. Autism will lose this fight! Finally, there will be many people that tell you your child “Can’t”. To them I say, “Watch her!”
Make sure to visit www.puzzlepeacenow.com to see all the amazing things they are doing for kids with Autism in our community