At ExtraSpecialTeas, we always like to see the silver lining in any challenge....
Many parents of kids with autism, or other special needs, have been self-isolating for our children’s benefit for years. For 12 years our family lived in the bubble. Little did we know living in that bubble would prepare us for self-isolating during these uncertain times. I remember not being able see family and friends while we were doing Jache’s home-based Son-Rise Program giving him time to develop his sensory system in our non-distractible playroom.
We ran this program in Houston, Texas with Jache from ages 3 to 7, and in the Berkshires, Massachusetts, from ages 7 to 15. Over the 12 years of the program, we trained over 150 volunteers! If you were our friends back then, you knew that we were fighting to bring our autistic son into our world and you understood and/or volunteered to help us. If you did not understand or volunteer, we probably did not see or have much contact with you. We were focused on a mission to save our child! Sounds pretty darn familiar in these times.
We set up a playroom in our home by taking down the existing door, and replacing it with a door with a two-way mirror, so that we could train volunteers to help work with him (we call them “Jache’s Angels”). Our Angel Team spent countless hours working to interact with him, lovingly enticing him to join our world. Jache was very exclusive. Some professionals who worked with him said that he was one of the most exclusive children that they had ever worked with. When I use the term “exclusive,” I mean that children with autism often seem distant or disconnected to loved ones. For months and years we worked just to get eye contact.
The program we chose was based on the concept that by eliminating as much excess distraction and stimulus as possible, the child would be able to connect with our world, first through eye contact and then by non-verbal communication. We tried to shield Jache from overloading his already maxed sensory system by eliminating distractions like the phone ringing, other family members talking loudly, the television, bright lights, crowded shelves, etc. We ran the home-based program 8 hours a day/7 days a week. Many days I did not leave our home, did nothing but work with Jache in the playroom, give feedback to volunteers, research activities/treatments and prepare for weekly group meetings where we would collaborate to figure out the next step to help Jache move forward.
This program was for Jache, but my husband Scott and I soon learned that it was also a program for us, too – an opportunity to look inside ourselves and be the best version of ourselves. That may sound a bit silly. How could being alone in a playroom with an autistic boy help you be the best version of yourself? Try being alone in a small non-distractible room – no electronics – just you, the child and a mirror. We, along with Jache’s Angels, learned that we had to reflect on ourselves, to grow ourselves in order to be there 100% for Jache. It can be pretty disconcerting being in a room with someone who gives you no eye contact or words. You have to be strong in yourself, knowing you must be the best version of yourself, to be able to help.
For me, the biggest gift I received from our program was learning to be “present” in the moment. Before the challenges with Jache arrived, I had run through life not really being present in the moment or with the person I was speaking to. One of our Angels learned that she had always felt “invisible,” so she worked on that issue every time she went into Jache’s playroom. She made huge strides in her personal development simply by spending time, being present with a little boy who seemed to be shut off from society.
Many of Jache’s Angels learned patience, not taking anything for granted, appreciating even small steps, and many other life lessons that have helped make them better people and parents. We know this because we are still in contact with most of our family of Jache’s Angels and they have shared with us how Jache and his isolated program have helped them in their current lives. As we all look back on this, it was a very special time in our lives! Even our daughter Molleigh began helping Jache in the playroom when she came into our family![pic of Molleigh & Jache] Little did I know that every step of Jache’s program (and my life for that matter – more on that later) prepared me to be the Executive Director of ExtraSpecialTeas!
I suspect that most parents with children, who are now adults, with autism and other special needs know what it feels like to live inside the bubble. We’ve got this! We’ve all got this because we are in this together.
I would love to hear what you’re learning during this time of self-isolation and how it can help you become a better version of yourself!
Be well! Be safe! Please share your comments below.
Hoping you too can stay present and embrace the moment!