Written on Kevin’s 21st birthday.
By Debra Muzikar
Dear Younger Me,
It’s 1997. As you sit in the neurologist’s office watching 3-year old Kevin lining up toy trains, the doctor will inform you Kevin’s not interacting like “normal” children. You will hear the “A” word and you will feel sad. You will ask the doctor what to expect for Kevin’s future. The doctor will tell you Kevin will probably need life-long support, he will most likely be in special classes in school, and he may be institutionalized as an adult. You will feel angry with this physician for his cold-hearted delivery of this information. Of course he is wrong you will tell your husband. How can a doctor meet a child for 20-minutes and tell that much about their future? You will feel protective of Kevin and tell your husband we must keep Kevin away from doctors who make such glib prognoses.
Tighten your seatbelt! You’re in for a wild ride. The next 18 years will be filled with high highs and extreme lows. You will quit your job to devote more time to parenting. Don’t worry about money. You will be provided for. You will learn to appreciate small things in life. You who were so impatient and fast will learn to slow down and be patient.
Many helpers will come to your home. Each person will impart a special gift to Kevin – music, art, Frisbee, dogs … Some of these helpers will become lifelong friends. Although Kevin will not develop many friendships in school, he will have many big brothers and sisters.
You will meet other people who will make your life more difficult. You must choose not to see them as enemies but as a sign to move on or change course. Your carefully laid-out plans will not always materialize. That’s okay because life isn’t scripted. The leaps of faith you take will have positive outcomes. You will learn to let go of things, people, places and most importantly pre-conceived ideals. You will learn the roles you play are temporary and not who you really are. You will learn the power of visioning.
Many people will give you advice; you must listen with discernment. You may think it’s important to share your story. It’s more important to protect Kevin from unscrupulous people who will use Kevin’s story for their own agendas. Some people you trusted will betray you. Those you put on pedestals will disappoint you. Those you judge, you will find yourself in their circumstances. Be careful what you share and even more careful what you wish for. No matter how bad your day is, always be grateful.
At some point, you will become deeply saddened when Kevin loses hard-won skills. Your prayers will be answered but not always in the way you think. You will meet many parents who share a similar journey. You will help each other. Kevin will live in many different places. He won’t always live with you, but he will always be safe. You will learn to let go and trust. The two of you will travel many places and meet interesting people. Many of the people are angels in disguise.
Kevin will surprise you. Sometimes he will take many steps backward and you will think he is lost. During these times you will be sad and fear for his future. Trust he will emerge again stronger and more capable than before.
Final words … laugh more…Be kind to yourself.
Trust.
***
Debra Muzikar is the co-founder of the Art of Autism project. Kevin is the main inspiration for the project.
The Art of Autism is accepting Dear Me letters and videos from autistic people and parents. Email theartofautism @ gmail.com.
Yes! related on so many levels. As parents we sacrifice so much, along with the irreplaceable joys and love…When our children don’t follow a typical course, it can be so much harder to chart the “right” path.It’s SO important to laugh when we can. Tho trust…hmm 😉
Thanks for being a light to so many! I hope to find time to write one of these…