Autism and rising to challenges

Beth Kuklinski

Eleven years ago I became a mother to a boy and girl set of twins. Two short years after that, my son, Jon, began losing language and was soon diagnosed with Autism. Maybe some of you can relate to the whirlwind that begins when you hear that your precious and beloved child has an exceptional need. I describe it being pulled out with the tide, rolled and tossed by the ocean, and then, if you stop struggling, you find yourself underwater in a new and mysterious world with skills more amazing than you dreamed and that you never knew you possessed…such as breathing underwater. It isn’t easy.

I live an unusual life now. After years of interventions and fighting for services, fighting for understanding, fighting against the world as it was, we walked away. Literally, we walked away. In the short version I struggled to find a charter school that would accept my son due to his bathroom accidents. He attended private school with an aide for a year while I went to grad school and worked full time. He went to a public school for four days. He began pulling his hair out and screaming not to go. I watched boys tease and bully him while I was a few feet away. I felt helpless and so did he. So I told the teacher “we were leaving”. “You can’t do that” she said. “Watch me,” I replied and we walked out of that school, and that life, forever.

I dreamed of opening a school. I think I always had, but got caught up in worrying about how life looked and the approval of others. A new fuel filled me. I was so tired of fighting against things that simply WERE, and I, instead, began to fight for the way I wanted things to BE. After three challenging years, Jordan Lake School of the Arts opened its doors. We are going on our fourth year now. The kids have grown and changed. Jon’s words are still coming back and he smiles the satisfaction of knowing what it is like to belong, to have friends, and to be part of a school. I have remembered why I love teaching and I feel passionate about it again. We hike every morning at school, do academic work, and have arts all afternoon. The kids just finished performing Rats! A play based on the Pied Piper.

I guess what I want people to know about special kids is that they do change your life. They turn it upside down and inside out, and shake it every which way. It doesn’t look or feel the same… and therein lies “the gift”. I used to dream of the status quo. Now, I shoot for the stars. I used to feel the need to be normal and I now know the beauty of being myself. My son and the unique kids with Autism, who are my students, have taught me that. I don’t want to spend time with anyone else. I feel more alive and live with more purpose that I ever had in my picture perfect “normal” life. To those of you reading this, who might have just received a diagnosis for your child, you may not believe me now. Mark my words. You will be grateful one day. If you can relax and trust that this was all completely intended; that you are made for this experience and that the growing and learning gives you strength you never knew you had. Isn’t that the point? Your child is your teacher and you are theirs. It is a symbiotic and heavenly relationship and you both deserve to enjoy the experience regardless of how far behind society is in understanding unique individuals. Don’t buy into the lack of what is, see where the world needs to change, and be the one to bring it about. You CAN do it, or you wouldn’t have been chosen for the job. And trust me, the people whom you meet who “get it” are worth a thousand of those who don’t. Your child has given you a chance to remember what it means to be free from caring about what others think and to see the beauty of things the way they are.

I hope I can inspire you to see the beauty of what is, and the opportunity that is woven into a “one of a kind” package…that perfect and special child that has brightened your life. There is something in you that is going to grow and blossom because of this experience. You are one of the lucky ones. Enjoy the gift.

About Author Beth Kuklinski is a graduate of North Carolina State University with a Bachelor’s Degree in Education, graduate coursework in Special Education and is completing a Master’s in English with a specialization in multi-cultural and transnational literature. Beth is the founder of Jordan Lake School of the Arts; an arts and nature based pilot program inclusive to children with autism as well as a radio host of Breathing Underwater: Stories of Autism airing on WCOM and nationally podcast on AutismRadio. She is also the proud mother of twins, one who has autism.

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