The leaves are changing. The air is crisp, with a hint of a chill. The sweaters and long pants are coming out of storage. No doubt about it. Fall has arrived.
And with the change in season will come changes in routine, changes in activities and changes in expectations. All the things that fill the heart and gut of a special needs parent with fear and dread.
My son Gabe is six years old, and he has autism. He is charming, and funny, and very very smart. He also exhibits behavior at times that is unusual, challenging, and unpredictable.
We are blessed in our lives to have many, many good friends, family members, mentors, teachers and community members who know our family and know our son. They love him and give him the time and support he needs to fully participate in whatever is going on around him. But those relationships take time to develop, and things are always a little rocky at the beginning.
For me, the start of a new year means entering into relationship with a whole new set of people. It means connecting with a new classroom teacher, a new Little League coach, new after-school program leaders. It means a new set of kids at school, on the playing field, in the after-school clubs. It means trying to connect to a new set of parents as well.
For each new activity, I hope the people we encounter will be patient. I hope the coaches will be interested in partnering with us and discovering how to reach our little ball player. I hope the art teacher will be willing to take a few extra moments, to explain things more than once, to show Gabe what to do in addition to telling him. But I worry that they will not.
I hope the other kids will be kind. If it takes Gabe a little longer to understand the rules of the game, if he lets a pop fly drop to the ground, if he takes a while to join in an activity or a conversation, I hope they will be patient. But I worry that they will not.
I hope the other parents will be understanding. If Gabe has a meltdown and has to be escorted off the field when he gets tagged out at first base, I hope they won’t roll their eyes and ask each other, “What’s wrong with that kid?” I hope they will ask instead, “Is there anything I can do to help?” But I worry that they will not.
In the past, I’ve brought these same worries into the High Holidays with me. High Holidays can be a time for reflection and renewal. A time for community and connection. However, in addition to a time characterized by prayer, song, and special foods, the High Holidays are also characterized by a disruption in the normal routine, new places, noise, unfamiliar expectations and crowds. Most of us know from personal experience how challenging this can be– especially for kids with special needs.
But this year feels different to me. While I’m currently experiencing my typical early fall worries about activities and school, I find myself looking forward to the High Holidays with calm and a sense of wholeness. Over the summer, our congregation formed a new Special Needs Advisory Committee, and we have been working hard to make High Holiday services and programs accessible to families with kids with special needs.
I’ve spent hours in the last few weeks on this project. I’ve met with the coordinator of High Holiday programming. I’ve spoken with our Rabbi. I’ve had dozens of email exchanges with parents of kids with special needs in our congregation.
When I first started out, I felt a great deal of uncertainty. I’m new to this advocacy game, and I certainly don’t have all the answers. In every exchange, I worry I am going to say the wrong thing, or offend someone, or unintentionally leave someone out. But taking a chance and moving forward seems better than being immobilized by fear, and so I send the next email, initiate the next conversation, suggest the next idea.
With each exchange, I feel my confidence grow. And more importantly, with each exchange, I feel the web of connection drawing me closer to members of my community. I reach out, and I feel people reaching back to me. I open up about my experiences, and I find responsive listeners. I feel the trust growing as other parents share their stories with me.
In the process of working on inclusion and accessibility at High Holidays, I’ve felt a huge sense of connection and relief. Yes, transitions and crowds and new expectations are hard for my son. But I don’t have to face it alone. I’ve reached out to members of my community, and I’ve been overwhelmed by the responsiveness I’ve found there. I don’t have to figure this out by myself. My community is there to help me. Out in the wider world, I just have to sit back and hope that the people who enter my son’s life will have the patience, creativity and understanding he needs. Here, within my synagogue community, I’m finding I can speak up for what we need as a family. And with that knowledge, I find myself energized to put structures in place that will support other families as well.
I’m looking forward to Rosh Hashanah. I’m looking forward to greeting one family outside the building, so that they don’t need to subject their sensory-sensitive child to the chaos of the lobby. I’m looking forward to connecting another family with the member of the childcare staff who has been given instructions and tips for attending to their child’s needs during the morning. I’m looking forward to spending a little time in grown-up services, confident that my son is in good hands in the children’s program.
For me, the High Holidays give me a chance to reset. To make new choices. To envision the world I would like for myself and my family. For me, that vision includes being present for the people who need me, sharing in the joys and challenges of family and community life, forging deeper and more meaningful connections, and working to create an environment that nurtures all of our best selves.
Alison Auderieth Lobron is a wife, teacher and mom living in Newton, MA. She works in the field of children’s social and emotional development. Alison is the creator of the blog The View Through Autism Glasses, in which she writes about lessons she is learning while parenting her two very different children