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OOPS! Part 2 of: When We Forgot Our Son Has Autism

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What could have been a huge disappointment today, was not. My son, once again, showed us just how thirsty he is to exist comfortably in this big and often scary world. This morning we decided to give him a push (bribery) so that our family of 5 could all see the Freedom Tower and 9/11 Memorial together.  It would not have been the same if he and I sat at home in his fears while the rest of the family ventured off.

He has autism. Yes, we forgot. Read about how the day began OOPS! We forgot about Our Son’s Autism.

We forgot about the part of him that is nervous and afraid of the things in this world that don’t make sense to him. Those things trigger his anxiety.

We ordered tickets for all 5 of us forgetting about that part of him because when we think of him, we think of him absent of the things that autism makes hard for him. Our son is not autism. He is our lovable, silly, enthusiastic, kind, friendly, social and brave son.

Today, nearly every step he took was laced with worry or uncertainty. But he used the tools he has learned to help soothe himself. He asked questions and reminded us that it was time to go home. “We still have some more fun things to see,” we would respond with hope.

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He needed his yellow headphones and plenty of reinforcement about things he felt or saw. He let us comfort him. In the moments leading up to entering the Observatory Deck, he grabbed my hand (as seen in picture below). Since his gluten free diet, his aversion to touch has diminished a lot. As his mother, the years he would not let me touch him was so painful, but mostly, I was sad that he was unable to have human touch as a means of soothing his anxieties. That is changing for the better.

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The one spot he felt most comfortable was on the observatory deck with his big brothers.

He loved looking at the Statue of Liberty, the boats and bridges. I could tell he was filled with curiosity as he gazed down at the beautiful sites.

I’d like to think that pushing him to go and face his fears was the right thing to do. I hope it was not a traumatizing experience for him. I hope it helped him realize that he can face his fears and survive!

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Today, walking around and exploring this sacred space that was once The Twin Towers, then a “War Zone,” reminded me that no matter how large or small the problem, we all start from “Ground Zero” to overcome what has fallen or is barren. I can not help but make the connection to my journey in recovery from alcoholism.

It took many years, but as a nation, we rebuilt the destruction of 9/11/01. We rebuilt it out of resiliency, determination and courage.

Today, my boy showed me that despite his fears, he is determined to face them. He is my reminder that it is possible to overcome and thrive!

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More About The Importance of Connections

Connection is a key ingredient to raising children on the spectrum. As Brene Brown, renowned Author, has said:

“Connection is the energy that is created between people when they feel seen, heard and valued- when they can give and receive without judgement.”

2006 is around the time I entered the world of autism scared out of my mind.  I was beyond terrified. Rarely did a day pass when I did not have raging anxiety or fear. A memory that is seared into my brain was the day my youngest son was diagnosed with Autism. I will never forget walking out of the doctor’s office holding a million forms and a prescription for Fragile-X Syndrome test. What was missing was a parent to parent support group prescription. I did not realize how much I would need peer to peer support. I had no idea how to raise 3 children, 2 of whom had Autism. I feared for the future. I needed a crystal ball to know my sons would be ok! I felt depressed, alone, and isolated. What I desperately longed for was connection with other moms who had the same amount or more experience in the autism world. I was “green.” I needed an expert level mom! Additionally , at the time I was having babies, social media had not been born.

I am sure those of you who raise an autistic child have had the awful experience of judging looks when your child is having a meltdown in public, making “strange” faces or is twirling while wearing noise cancellation headphones in response to sensory overload. I have been there countless times with both of my Autistic sons. Strangers only see disruptive or strange behavior, they cannot see the “why”. They do not understand. They are unaware of how much you are struggling as a parent, trying to figure out where the meltdown is coming from, how to ease the sensory overload, and how to calm your child.

When my middle son started his special needs pre-K program, I finally began to develop a network of mom friends living a similar life. It was a relief for me when I found these connections. They understood what I was experiencing and why my children were they way they were. I didn’t have to explain. We could just “be” when got together for playdates. We grew to trust each other and be supportive during tough times. We could genuinely celebrate the accomplishments of each other’s children. We never felt judged, because we walk in the same shoes. These mothers became my parenting community that I so desperately needed in the beginning. These connections have made the past eleven years much easier and not so frightening.

I am so grateful for my ever-growing mom/parent community. This community has helped me to get to a place in my life that offers the perspective I wished I had early on. It is perspective fueled with hope and confidence. It has given me the ability to cope with problems.

I look back at a life that I thought would be 100% impossible and see that it was not the case. We have made it through many heartaches. We have witnessed our children overcoming challenges. We see them enduring. We see them enjoying life in their own unique way. A life I thought would be hopeless, has been a world filled with beauty and growth. We have climbed the steepest mountains – sometimes successfully arriving at the top, and sometimes falling back down. I will be honest, I have had my share of tears. But my tears are not just from sadness. Gratitude tears come in abundance. Also, I have learned that projecting into the future is a waste of time. Instead, I parent one day at time. When I do that way, I find tomorrow is easier.

I have overcome and learned so much during this journey so far, but I know I still have A ways to go. What is different today, is that I am not always afraid. I will not let fear dictate my parenting. I trust when I stay connected to my peers, this journey will be easier, and my children will ultimately benefit the most.