Sometimes I wonder – what does it matter to him, whether he sets foot in any type of masjid/mosque? My son is definitely unMosqued, as is my entire immediate family, to some degree. Oh, we go to events and Jummah prayers at a mosque where we live, but that connection, that sense of belonging that feeling of strong community? – Yeah, not so much.
By this point in our lives, though I want for our mosques and our communities to grow more inclusive of individuals with special needs and their families, to have the right kind of accommodations in place, to approach each other from a place of love and respect –it’s not something I agonize for us anymore.
It’s the little things that grab my heart and cause my breath to choke. Things that remind me that in his infinite patience, joy, strength and wisdom, my son still struggles every day. The challenges never stop for him, the worries never cease for me. One can chalk this up to clichés of parenting. But it’s so much more.
Last week he got a cut on his middle finger. By the time I saw it, he had worried and picked it into a sensitive, gaping wound on his finger tip. The surrounding skin became swollen, and liquid was starting to ooze. My thoughts raced from how could I have missed this? to how do I get him to keep a bandage on this? to how will it heal? to what if the infection spreads?
Like many individuals with autism (remembering that autism is a spectrum and it manifests differently in everyone), Lil D has a high pain tolerance. Two weeks back when I went to get him from school, he came to me with his face all banged up like he had gone a few rounds with a prize fighter. Scratches on the side of his face, large bumps on his forehead – I felt sucker punched. The cause? A meltdown during lunch, resulting in some head banging.
I asked his teachers – did you give him Motrin? (We have a health note to administer Motrin as needed). No, they responded. He didn’t seem like he was in pain.
Oh, he was in pain.
Now with his finger? There was visible signs of pain. Every time I have put antibiotic ream on it and bandaged it up, he has winced and cried out in pain. When I take the bandages off at night to let the air help scab it up, he is visibly unsettled and sensitive to it touching anything.
When I picked him up at school this week, there were marks on the side of his face. He has this intermittent, worrisome habit of taking his thumbnails and picking at the skin on the side of his eyes until there is a raw, rubbed area on both sides. By the time I work to distract his fingers and help the wounds scab up and heal over, it’ll start all over again.
These are the things are some of the things I think about, worry about. And I know I’m rambling here, but stay with me. Here I am at the 51st annual Islamic Society of Northern American convention in Detroit to speak about how to make our mosques and communities more inclusive special needs families and individuals – I worry about being away from Lil D, from his younger siblings A and H, about his finger and his face.
I’ve been chronicling our life and autism journey for four years now, and yet I haven’t even begun to capture the minute and major ways autism affects and dictates Lil D, and in turn, our lives. All that is good, all that is so very difficult from daily living to family time, to our relationships with each other, to stigmas that remain, to how we try to rely on our faith to carry each other through.
And time and time again, I look at my son and think, he is just so beyond all this. He is living here with us, but his akhirat, his happily ever after is just waiting for him. It has to be. And God-willing he’ll take us there with him. So why this stress over being unMosqued, or the place of a mosque in our lives? Why is this so important? Because we are but one family. There are so many more.
Enabling All Muslims
About six months ago I received an email from my friend Maggie Siddiqui about an exciting and much-needed endeavor she was embarking on through the support of American Muslim Health Professionals. Maggie and I had talked many times in the past about the lack of inclusion, support and resources for Muslims living with all sorts of disabilities as well as their caregivers.
She proposed an inclusive website connecting Muslims living with special needs with the right resources, support services, mentors and so much more. I was immediately intrigued. I’ve spent the better part of Lil D’s life stumbling through my research in trying to find the best of what is out there to help him and our whole family.
So many others just don’t know where to go.
She put together a great advisory group, and we spent some time mulling over what we would want in such a website and developing a survey to administer to Muslims with special needs as well as their families/caregivers. The results from that survey were surprising, and to some extent, they were not.
I mean, I know. I know because of years of trying to find our way, about how frustrating it is to figure out what is the right course of action to help a loved one with a disability. Where do we turn to? How do we find help? Who do we talk to? What happens when our loved ones, who cannot live independently, grow older? Who are the right physicians to see? How do we get grants and Medicaid waivers to help cut costs down? What is an IEP? How do we write one for our kids? What are their rights in this country? What do public and private schools have to offer? What is the best means of support? How can caregivers get support as well?
And this was just the drop in the bucket. What about in our mosques and Muslim communities? How do we address the spiritual frustrations of special needs individuals and families? What kind of accommodations are our mosques and community centers and Sunday/Islamic schools making? Do they even know what to do? How do we connect teachers, leaders in our mosques, scholars and imams to tackle these issues and bring them to the forefront?
Through diligence, never-ending detective work and sheer willpower, I have cobbled together the best answers I can for my child and continue to try and forge the most respectful, dignified and inclusive path for him in school and in the community.
It’s taken us 14 long, long years to get to where we are, and we are still just getting started, learning more every day of what’s out there. I don’t want it to be so hard for others. I mean – when you have a child or family member with a disability, of course you will become their strongest advocate.
But the journey shouldn’t have to feel so lonely. I started blogging about Lil D, which throws me into a tailspin every time as I struggle to balance being open about what he is dealing with in hopes of relieving the stigma of keeping quiet with respect for his (and our family’s privacy). But I feel it’s worth it. Muslims with disabilities and their families need to know that we are there for each other, that our community, our mosques, our teachers, imams and scholars are there for us. That’s where EnabledMuslim comes into play.
Alhamdulillah, with EnabledMuslim and other newly developed organizations tackle disability inclusion in the Muslim community; I finally feel that we are moving beyond the talk, beyond the awareness to a place of action.
In the coming months, as EnabledMuslim grows deeper in content and reach, I’ll write more about how it (and other endeavors) can be of help to all of us. Disability inclusion is not an issue to just be tackled by those of us directly living with special needs.
It is an issue for our entire Ummah to embrace with love and dedication.
It would’ve been sheer foolishness for me to bring Lil D here to ISNA in Detroit. His needs, tolerances, likes and dislikes don’t mesh at all with a convention atmosphere. And even ISNA has a ways to go to provide better inclusion for those with disabilities. But things are happening and Alhamdulillah for it all.
So my thoughts turn to him, to A and H, to Lil D’s finger, to the raw marks on his face, hoping his Baba and grandparents are keeping a close eye on it (I’m sure they are). My thoughts are on back-to -school, on our upcoming IEP (individual education plan) meeting in October, on hiring new therapists since two have left us. My thoughts are on A, who is starting middle school, and H, who is starting in a new school. My worries are not so much about our family’s unMosqued state of affairs. We’ll find our way, Insha’Allah.
But I want the rest of you to find your way as well. Let’s find it together.