I can feel it. On more days than others, I can feel it. I can almost smell a change in the air, the movement towards action built on the weary shoulders of ongoing awareness. It’s starting to happen, all too much slowly for my impatient bones, but inch by inch, bit by bit. Not only are our Muslim communities starting to recognize and acknowledge the different needs and challenges of individuals and families with special needs, we are beginning to lay the path – brick by brick – to affect some real change.
This weekend we are gearing up to attend what has become one of our family’s favorite annual events: The Eid Celebration for Kids with Special Needs and Disabilities, hosted by the Washington, D.C. chapter of the Muslim American Society and also sponsored for the past two years by Islamic Relief USA. It’s an event exclusively organized to help individuals with special needs and their families enjoy activities, have fun and participate in a special afternoon prayer with no judgment, no pretenses, no second looks.
Although I can’t speak definitively, this event is the only of its kind in the United States and has been that way for the past four years. My dear friend Rasha Abulohom has poured her heart and soul into organizing this event, which occurs after Eid ul Fitr and Eid ul Adha. It’s consistently been a double challenge of getting organizations to sponsor the event (props to IRUSA, the ADAMS Center, United Muslim Relief, and any others I missed) as well as encouraging people to attend.
Which is something that has puzzled me for years – why do the organizers have to work so hard to not just get the word out, but actually get special needs Muslim families to attend? It reminds me of a conversation I had with my friend, Joohi Tahir, who has a daughter with autism around the same age as my son, and who is the executive director of a new organization called MUHSEN – Muslims Understanding and Helping Special Education Needs (spearheaded by the renowned Shaykh Omar Suleiman).
We were both at the Islamic Society of North America’s 51st annual convention in Detroit this past Labor Day weekend, where I was speaking on a panel about disability inclusion in the American Muslim community. That day, two new Muslim organizations with the goal of helping Muslim individuals and families with special needs – MUHSEN and Enabled Muslim – were launched. (I am part of the advisory group for Enabled Muslim).
After the panel discussion, Joohi and I spoke about the challenges that lay ahead for both organizations and for us, as parents trying to carve good paths of faith, independence and inclusion for our autistic children. Part of MUHSEN’s goals is to develop disability inclusion pilot programs in various masjids, as well as support groups and other things.
Do you think parents will come though, Joohi asked me? She related the story of trying to organize a support group for individuals and families with special needs in her local mosque, and how many people, whom she thought the group would benefit, didn’t want to come. I thought back to my own community – where time and time again Muslim mothers of children with special needs have privately reached out to me for help, but have been reluctant to join in any sort of public activity.I’ve been puzzling over this. Why is this? The Eid celebration for children with special needs and disabilities has always had a good turnout, from what I have seen. But I know it’s always a challenge for the organizers to get people to come, just as it’s been for Joohi and me to encourage friends to meet and be more open and public about our joys and challenges with our loved ones who have special needs.
It’s been four years since I started sharing and writing about autism, about my son, Lil D and all that is hard, wonderful, earth-shattering, joyous, devastating and beautiful in our autism journey. It’s been a daily struggle to peel back the protective layers and share what it is like in hopes of making connections, finding inner peace, and showing others that we must support each other in what we are going through. We must build a community of support and care. We must understand each other better and eliminate the judgments. We must lift each other up when we are falling and bolster each other’s faith.
It’s been about autism awareness and action on a personal and global level, and it’s been about waking the Muslim community up to what is happening right in front of us. It’s been about demanding respect and dignity for individuals with autism. It’s been about encouraging other families find each other and hold our communities responsible for what they must do. It’s been about getting our mosques and Muslim leadership to take notice of those with special needs and make efforts of inclusion.
And it’s been about my son. It’s always been about him, and it radiates out from there.
I often call out our Muslim leaders, scholars, imams, organizations, mosques and communities to make more efforts, to build programs and support individuals and families with autism and other special needs. But I also want to encourage the Muslim families with special needs themselves:
Come out to events like MAS-DC’s Eid Celebration for Children with Special Needs and Disabilities. If you hear of a support group being organized in your local mosque, check it out. Maybe you don’t need support, but maybe you have support to give. And I’ll turn this criticism on myself — I’ve been stewing about things in my own local community with regards to what I want our local mosques to learn and do for local Muslim families with special needs. But nothing will be gained without being more vocal, without showing up.
Let’s raise our voices together.
And if you’re at the Eid celebration this weekend in Northern Virginia, look for me and Lil D. He’ll be the one in the hoodie twirling his beads. I’ll be the one smiling, taking pictures and probably crying. It’s what I do.