In a video posted on Youtube, Lee cited numerous reasons for going back to Christianity, including infighting and division in the Muslim community, being judged on things like a woman’s hijab or the length of a man’s beard, on apostasy, on how Muslims are killing Muslims, on how he doesn’t know a happy Muslim and a host of other reasons. Many things he cites are problems, indeed. But these problems exist in other faith traditions as well, and there is so much good and change happening in the Muslim community that he doesn’t even address.  Well, it’s too earlyin all of this – and the story needs to unfold more — before we can venture forth an opinion.

Watch his video explanation.

 My mother-in-law called me kismat-wali. She is visiting her daughter these days, who has five children, works full-time and has leads an incredibly busy life. The classic Super Mom – that’s my sister-in-law. After spending some time with her and seeing how much she manages between the kids, her teaching job, cooking and housework, my mother-in-law remarked that I am a kismat-wali.

And I am – I gave up full-time for part-time work three years back after realizing that I could not effectively care for and meet Lil D’s (and our other children’s) needs. We live comfortably on one income, and I can pursue various therapies and treatments for Lil D without amassing horrible debt. My husband and I have a good marriage. My in-laws, who became United States citizens this year, live with us in a spacious house. Our joint-family living situation is great, and they are such a source of love and support, as are my parents, who live two hours away.

I have three great kids, two of whom are “neurotypical.” They all are really the greatest kids in the world, and the way Amal and Hamza’s relationship with Lil D deepens fills my heart with infinite joy and gratitude. Lil D, well he is innocence and love personified, on his best of days and his worst of days. You meet him, and you are meeting (in my humble opinion) a Jaanithi-boy (heaven-bound).

So there is all this. But we humans a funny lot. And depending on what day you talk to me, my thoughts on whether or not I am khismat-wali change. God understands. He knows.

This is Lil D

When Lil D comes home, I meet him at the bus, because as a special needs student he must be escorted home from the bus. The first thing I do is unzip his harness (which straps him into his seat on the bus) and take it off of him. We are back on the bus this year after voluntarily giving up the bus when his self-injurious behaviors and aggressions spiraled out of control last spring.

Sometimes he gets off the bus upset; other times he is calm and happy. We walk inside, and soon after Amal walks home from her bus. With my in-laws temporarily out of town, I have arranged for a classmate’s mother to drop Hamza home – because I can’t pick him up and be at home in time to meet Lil D’s bus.

We all get inside, and I empty Lil D’s backpack. I check and see how much lunch he ate so I can wager how hungry he may be. He often walks in requesting “kippa” or “cooka” (chips or cookies), and I give him a few until I settle the other kids. Then I get him a proper snack or lunch (if he didn’t eat at school).

I also check his notebook. He has a blue folder with school notes that go back and forth. Daily school communication is written into his IEP (individualized education plan) because without it, I’d never know how his day went. He can’t tell me. These are the things I first scan in the notes:

1. How much lunch did he eat (box checked for all, ate ½ or ate little or nothing)?
2. How many voids (times he went to the bathroom, separate boxes for urine and bowel)?
3. How many accidents (bathroom accidents, if any. Recently this number was way up.)?
4. Data collected on behaviors targeted for decrease: How many self-injury (this includes hitting himself, hitting his head on an object like the wall, table or floor, biting himself, pinching himself and so on), how many aggressions (towards others) and how many loud vocals. Dropping used to be in this list (in the fall, he spent 90 percent of his day for weeks dropped on the floor in school to avoid doing anything), but this behavior is now off the list because due to our ever-changing, meticulously managed behavior intervention plan, dropping has stopped.

Any alarming rises in these numbers and Lil D’s teacher calls me, or I call him. We are discussing these things all the time, constantly tweaking his behavior plan, bouncing ideas back and forth on what could be the cause, what we can change, and mentally high fiving each other when things improve.

Then I read up on what programs they are working on, how he was acting that day and any other bits of information they provide me. It’s never enough. I always want to know more. So much more. But they do have a lot of notes to write at the end of the day, and I pick my battles. Here’s what the note said yesterday:

“Lil D mastered his ‘hand washing’ program today! He also got 18/20 correct on his ‘point to pictures in book’ program today! Go Lil D! Lil D got a 6/7 on his point to numbers program J”

This is a good note. This is, in fact a great note. The number next to self-injury is 11 and aggressions are four. A few months back, the self-injury number was in the 800s – as in more than 800 times he hit himself or hurt himself in some way during the school day.

So Who is Kismat-Wali?

I am thankful. I am grateful. Ya Allah, really I am. We are thankful for how he has stabilized after the difficulties of the past few weeks. The rest of the day is a blur between his therapist coming over and working on some life-skills programs with him (bathing himself, vacuuming and a new one we are starting – watering the plants) then taking him out for some community-based instruction while the husband and I take Amal and Hamza to school for her science fair.

We all come back together by 6 p.m. I quickly cook dinner and call the gang to eat. We all sit down together and eat. All of us. Usually Lil D eats before us. I try and make him adhere to a dinnertime routine, teaching him to be independent at meal time, and it’s easier to do this one-to-one with him. But tonight we all eat at the same time. Everyone sits in their seat, everyone feeds themselves and Lil D even says “more” after finishing his first helping. The husband and I exchange grateful looks – this is nice. This is really, really nice.

After dinner, we all enjoy some downtime, and soon my husband takes Hamza to bed. Lil D goes downstairs to spin his beads and be loud. I let him have his “stimming” time. Amal and I pray Maghreb together, after which she prepares for a social studies test. Lil D is being awfully quiet, and when I check on him, I find him in the basement asleep on the bed. I wake him up and guide him upstairs, take him to the bathroom, put a pull-up on him and tuck him in. Soon Amal goes to sleep as well.

This day has gone very well. I am grateful. My nearly 13-year-old son mastered his hand-washing program, correctly identified some pictures in a book by pointing to them (“point to ball”), correctly pointed to some numbers and didn’t have a pee accident all day. He didn’t have a meltdown today. His self-injurious behavior was very low. He said “more” Though he couldn’t come with us to Amal’s science fair, he did well with his home therapy session.

We have a home, we are clothed, we have clean water and good food, we are blessed with children, we have loved ones.

We are kismat-wali.

My nearly 13-year-old son has severe autism. His accomplishments of late are hand washing, pointing to pictures and staying dry. He has cycles of crippling OCD and self-injurious behavior. He cannot tell me how his day went. His peers are learning pre-Algebra, preparing for end-of-year exams, reading great books, playing soccer after school, overdosing on video games, hanging with their friends, giving their parents attitude. His cousin, who is two weeks younger than him, just got admission to a prestigious school for the following year and passed her exams to qualify for honors and advanced classes.

I see Lil D struggle. I pray that he learns enough to live as independently as he can when he is an adult, pray that I am always there for him, that I will live one day more than him.

We are not kismat-wali.

Lil D shows Amal some love at her soccer game

The whole family came out for Amal’s soccer game on Saturday morning – Lil D, Hamza, my husband and myself. I can’t remember the last time we all went to one of her games or one of Hamza’s games. All of us. The kids have been playing with the Ansars soccer league for four years now, and many of these kids have been with Amal on teams since they were five and six years old.

Playing with the Ansars is one thing I have tried my best not to compromise for Amal, and now Hamza, even when things get overly tough, difficult or hectic with Lil D. Each season it’s a finely choreographed dance of coordinating practice times with Lil D’s after school therapies, touching base with the therapists to stay late if we are late coming home practice, getting progress reports and updates via texts and phone calls from them, and making sure dinner is prepared and meds/supplements are given at proper times, even when I’m not home.

So when we soccer parents come together again in the fall and spring seasons (skipping a season now and again) it’s like family coming back together. My husband will ask me from time to time – why not put the kids in a soccer league closer to our house or one that only practices/plays on the weekends? My answer? It’s the Ansars. When you’ve stuck with a group of parents, kids and coaches that long, well it becomes family.

I remember four seasons back I took Lil D with me one Friday night to Amal’s game. It was hot and humid, and I knew I was risking a meltdown by bringing him along. Friday night events, after a long week of school and therapy sessions, are a lot to ask of him. That night, with the game starting late and the hot temperatures, the conditions were ripe for The Autism Perfect Storm.

I knew it was coming, and I asked the parents on the sideline to watch out for then 7-year-old Amal. Of course. Don’t worry. Go take care of Lil D, they told me. My memories of that night are a blur of adjectives and verbs – crying, screaming, flopping, hitting, biting, heat, sweat, helplessness, defeat and panic – fear that his meltdown (though I had guided him away from the field to a playground area) was disrupting the game, worried that Amal would get worried and distracted, wondering why I bothered at all trying to do all of this.

When he finally calmed down, I brought him back to the sidelines. Of course Amal was fine. Did he disturb the game, I asked the coach. Nah, she replied. It’s a soccer game. Everyone’s screaming anyway. Don’t worry about it, she assured me.

This season I started bringing Lil D back to Amal’s games again, which are now on Saturday mornings. The temps are cooler, and mornings are usually better for him. The parents were happy to see Lil D back. He got big, they said. He looks good! Glad you brought him.

One of the moms at our most recent game stood with me as we watched our kids play. She has a large family and even a few grandchildren, one of whom has special needs. We’ve been sideline soccer moms together for a few years now. She watched us with Lil D as I kept him from wandering onto the field, gave him my hat when he wanted to cover his face, and as he grabbed my husband and buried his chin in father’s chest with a goofy grin on his face.

No matter what happens, my friend said to me, I can see that he has a lot of love in his life. He looks like a kid who is well loved. And gives a lot of love back to you guys. Masha’Allah.

If there is one thing sustains us on this autism parenting journey, it’s love. The love we have for him. Amal and Hamza. The love they have for us. The love our three kids have for each other. The love the grandparents shower upon their children and grandchildren, and the love and support of friends and family who reach out to us in small and big ways that help to erase the difficulties, setbacks, frustrations, and exhaustion along the journey. God’s love, whom I lose faith in at times, who always welcomes me back.

Lil D cuddles with Nanijan

The love I see when Lil D, as big as he is now, climbs into my mom’s lap and draws her close to him. I think back to when he was two weeks old and I came to my parents’ home for two weeks. As soon as the remains of his umbilical cord fell off, my mother gave him his first bath. She held his tiny body in her hands and dipped him into the water. We all crowded around her – me, my brother and his wife (videotaping the event for posterity of course) and my dad in the doorway, waiting with a comb so he could carefully arrange the fine hairs on his first grandchild’s head.

As we marveled at his tiny body and the experience of the first bath, Lil D promptly released a stream of poo onto my mother’s hand in the water. I still remember her laughter.

Remember that, Mummy, I ask her. Of course, she replies. How can I forget? He was comfortable with me then as much as he is with me now.

This mothering thing, it’s not easy. Nothing profound in that statement there. But it’s worth it. It’s so, so worth it. When I contemplate what Lil D’s future will be, what will he do with the rest of the life, what can he contribute to this world, how will I his father, and his siblings manage his care, I remind myself that he has already contributed the greatest gift of all. Through his love and life, he has taught us what matters. What really, really matters.

Allah says that heaven lies at the feet of the mother (as reported in hadith). He knew what he was talking about. And though I dare not speak for what is in His will for us, I believe to my core that heaven, innocence, goodness and love (and whatever you believe in) lies in the grasp of Lil D. It’s in his footsteps, his breath upon my face, his peals of laughter as he does rough play with Hamza or as he pulls Amal down to play. It’s in his cries  and wails and in the flicking of his fingers. It’s in him even when he is the most difficult to be around, pushing me to my breaking point.

It’s in his eyes, which gaze upon me at times with such clarity and depth and at other times behind an impenetrable wall. It’s in every fiber of his being.

He is loved, and we are loved back. My mom friend at Amal’s soccer game saw it.

It’s good to be reminded.

Hamza pulls his arms inside his t-shirt too, so he can be just like Lil D.

Something is wrong. I can see it; I can feel it in my bones. Lil D is off, and as I go back through things in my head and track the data sheets that I (and his school) maintain, I see an alarming rise in incontinence – the fancy word for pee accidents. Lots and lots of pee accidents.

 I just threw out his old mattress, knowing it was beyond cleaning at this point, and got him a new one. And that new one is encased in an allergen-mattress cover with a vinyl cover on top of that, plus double sheets. The washing machine is running nonstop to keep him stocked in clean pants and underwear, and I’ve had to make an emergency trip to his school to bring in more clothes because he had accidents in every extra pair of pants I had stocked for him there.

I am washing his heavy weighted blanket. Every. Single. Day. He is taking showers in the morning because he is waking up urine-covered despite my best efforts — something I don’t like to do because the morning routine is so hectic already.

And then there’s the OCD (obsessive-compulsive disorder) behavior on top of all of that. The past several months, throughout the winter, Lil D was all about wearing hats, which were replaced by hoodies when the hats caused him rashes on his cheeks. We wondered, once spring came, how he would tolerate going hoodie-less. Well, that transition went fairly smoothly, with baseball caps acting as a buffer.

But the full sleeves obsession – that has proved really problematic. Not only is Lil D stuffing things up his sleeves (he’s becoming a bit of a kleptomaniac when we are out, and we have to check his sleeves before we leave any store), but if he wears short sleeves, he immediately draws his arms inside his shirt. We’re trying to overcome this OCD behavior by providing him with old-fashioned Richard Simmons-esque sweatbands to wear, but he’s struggling.

This is the boy who, last fall and summer, was obsessed with being in the shower. It was THE sensory thing for him to sit in the shower and let the water beat down on him. He’d ask to shower four times a day. Now, the moment he gets naked, he grabs whatever he can find and stuffs it under his armpits. He can’t get his clothes on fast enough. No “showa” requests going on at all. Wearing shorts is fine. Wearing short sleeves?You’re welcoming trouble.

I am tired. I am. I’ll admit it. I am tired of trying to figure this all out. I know there is an answer. The last few days I’ve spent consulting with my ASD (autism spectrum disorder) Mom expert friends, our doctors and his teachers at school in trying to figure out the urine accidents and uptick in OCD behaviors. I think I know what it is. I hope I do, and we’re addressing the problem now.

There are days of strength and gratitude and happiness. There are days of utter despair, and there are the days in between – some good, some not so good and all a little too tiring. There are days my faith is strong, there are days it is on autopilot, and there are days I struggle to get to the prayer mat.

In the midst of this, I read two status updates/questions in two different Facebook autism groups I belong to. In one, a mother asked what she was supposed to do: Her 10-year-old daughter, nonverbal with severe autism who is still in pull-ups (not toilet-trained) just started her period. What do you do? She cannot indicate if she has cramps. How do you teach her to wear a pad? How is this all going to work?

Another mother posted this:

“A couple of nights ago I had a funny feeling I should be checking on Mary*. It was 1am and she had not made a noise. She barely sleeps and at that time she is normally tearing her room up. As I opened the door I noticed that she had piled clothes and bedding up against her gate making it hard to open, I also noticed things from the top shelf of her closet on the floor, oh and…. No Mary. Not under the bed, not behind the curtains… Than [sic] I heard a giggle, she was on the top shelf of the closet, she had emptied the tallboy and used it as a ladder. So I woke my husband and we cleared her room, leaving just a bed. Didn’t get back to bed till around 3am. The next night Mary got out of her room at night and trashed the house, we woke up to find that she had emptied the pantry lining all the things up and opened up several bags of food and just plain littering. I discovered she had moved her bed up against the gate and climbed out, the gate we had installed a few months ago for her own safety as she has a habit of absconding. So while normal people slept my husband and I were up dismantling a bed. We left her with just a mattress. Tonight she got out her room again, how? Surely this girl has no furniture left! Well she pushed her mattress up against the gate, rolled up her blankets and you got yourself a makeshift step.”

Mary has a history of escaping, which is why her parents try everything in their power to make sure she is safe, especially at night.

These are the harsh realities of autism that is difficult, exhausting and nonstop. Autism is a spectrum, and this is our kind of autism. Someone’s daughter, nonverbal, still in pull-ups, who enters puberty and gets her period. Someone else’s daughter with a history of bolting and sleep issues, who keeps figuring out ways to escape her room at night. What are we, as parents, supposed to do?

My son, nearly 13-years-old, pretty much nonverbal, is having multiple urine accidents and amplified OCD behaviors the past two weeks. Not hitting himself too much these days, thank Allah, but banging his head on the floor, wall, or any hard object when he has a meltdown. He has a nice knot on the upper part of his forehead. Is he in pain? Does it hurt when he bangs his head? How many head bangs has to happen before I worry about a concussion?

In all the ups and downs, the triumphs and setbacks we’ve had with Lil D, these past few weeks aren’t the worst. By far, they aren’t the worst. So I should be grateful, right? Trust in His will, right? Ask for His blessings and mercy, right?

Right.

But unfortunately, not today. It’s not in me. I’m on autopilot, struggling to make it to the prayer mat, going through the motions. Ya Rabb, You’ll forgive me, right?

* Name changed to protect the child.

Autism Awareness Month, or as many in the autism community like to call it, Autism Action Month, is ending today. For some of us — we are happy to see it go, as the response to autism and the awareness of what this developmental and neurological disability is nowhere near where it should be.

Some in the autism community, including self-advocates with autism, look at the increasing numbers (1-50 school age children have autism spectrum disorder, or ASD, according to the latest reports from the Centers for Disease Control) and say the time for awareness is done. It’s time for action.

But the fact remains that with no national health plan to address the autism crisis, with varying opinions from the medical community on how to treat ASD, with the vast spectrum (some good, some bad) of educational services for children with autism in school districts around the country, with a general public still largely unaware how to react or respond to those with autism, awareness is still very much needed. But what should this awareness be? What should we be teaching the public? How should national autism organizations really handle their awareness campaigns?

My friend Harshita Mahajan attended an autism awareness event with her teenage son, who has ASD, where they had a horrible experience. That it happened at an autism awareness event is what grieved her, and us as her friends, the most. But she didn’t stay silent. She spoke up. And this is what happened.

The choice a lot of us face every day is should we make the effort to voice our grievances against an entrenched entity even when we know that very little change is possible, or should we conserve our energy and focus on the things that we know will make a difference in our children, their education and their health.

I was faced with this dilemma a few weeks back when my son faced the brunt of public ignorance about autism — ironically at an autism awareness event. Click here to read the story.

At the time I just wanted to just crawl into a hole and lick my wounds and heal, but after a few hours it became clear to me that something WRONG had happened, and I needed to do something about it; not because it would make a difference, but because I would know that I had at least made the effort to speak up about something that effects my son every day and will continue to do so for the rest of his life.

So after some preliminary investigation, I managed to get the personal email addresses for some of the people on the board of Autism Speaks, the organization that sponsored the event where my son and I left early after he exhibited autism behaviors that upset another family. I wrote to them describing the whole incident and described in detail exactly how their organization had failed me. (You can read my letter here.) I had no expectations at all from this whole process except to feel better with myself.

Imagine my astonishment when I quickly received a sympathetic reply from the board member I had written to. He completely empathized with us and assured me that he would be forwarding my email to the president and to the founders of Autism Speaks.

I was shocked that my voice had been heard, but an even greater surprise lay in store for me. The very next day I received an email from the president of the organization, Liz Feld. She wanted to discuss the incident and also take my feedback on ways they could do things better.

I quickly got in touch with my ASD (autism spectrum disorder) parent  friends in the virtual world  and took their feedback on steps that needed to be taken to improve autism awareness in the United States, especially using the resources of this organization.

I made an appointment with Liz, and then when we had the opportunity  to finally speak I was able to voice the suggestions that I had collected from my online community, including discussions on doing a short informative audiovisuals at events,  public service infomercials on TV and basically managing the media to promote authentic autism knowledge for the public at large. She appeared extremely positive about every suggestion I made, and we finished our talk by my assuring her that I would make a synopsis of our telephonic discussions and email it to her.

I sent my email, hoping for a reply or an acknowledgement.

The reply never came and the realization dawned on me that perhaps this is where the matter was fated to end. I felt a little let down, however in the final analysis I did have the satisfaction of knowing that our message had reached the highest levels in this organization.

And then two days back after dinner, I was busy doing something on my laptop with the backdrop of Anderson Cooper on CNN playing in the next room. And then there was a commercial break. And then suddenly I heard someone talking about autism — it was an infomercial, not asking for anything, just informing the public about autism and ending with the epidemiological statistics.

Did Autism speak out? Was it me? I don’t know.

All I know is that I will never ever think of NOT speaking out again. The effort is ALWAYS worth it.

–Harshita Mahajan

Lil D and his Dadima (paternal grandmother)

What would a parent do for their child? Anything. How far do we go for them? As far as it takes. What do we give up? Whatever we need to. What do we change about ourselves? Everything. When you add special needs into the picture, then your ability to go the distance for your child becomes the stuff legends are made of. And, there are no thanks necessary – it’s just what you do.

I have quit jobs, stayed up nights on end well beyond the baby and toddler years. I’ve driven thousands of miles to and fro from therapies, spent countless hours in meetings with schools hammering out the best IEP and school situation for him and have driven to his school three times daily to administer medicine.

I’ve cooked daily for him, adhering to special diets. I’ve held his hands and pinned his arms down to stop him from hitting himself, placed myself between him and walls to absorb his blows. I have endured bites, bruise-inducing pinches, head butts and kicks to my stomach and neck leaving me gasping for breath during the worst of his meltdowns and self-injurious behavior.

I’ve stayed up into the wee hours of the night doing research, trying to find out what are the best treatments and therapies to pursue, what testing needs to be done, what locks I can crack open only to be faced with new and different autism locks. I raised heaven and earth to get Lil D’s iPad back when it was stolen from him. This is what mothers do – we raise our children, in every definition of the word.

But last week my in-laws did something for the love of their grandson, something so profound and permanent that it has left me humbled and eternally grateful. Let me tell you the story:

Joint Family Living

About 14 years ago, my husband and I were married. Me, an American-born and raised Muslim, he, an Indian-born and raised Muslim. As new brides are wont to be, I was nervous. He had moved to the U.S. to do his medical residency and start a practice, telling me that his plan was to settle in America permanently. His parents lived in India, and he was their eldest child and only son.

I was familiar with the concept of joint-family living. It is fairly common in India, especially with our parents’ generation. But, I figured with my in-laws settled in India and us living in the U.S., we would have lengthy visits from them, but we wouldn’t be living together. Starting with the birth of Lil D, my in-laws began visiting (in the beginning, just my mother-in-law since my father-in-law was still working) for months at a time especially when a new grandchild was born. The length of the visits grew after my father-in-law retired. And by the time Amal was 18 months, they spent a year with us, during which we performed our Hajj pilgrimage while they looked after our kids.

When I tell my friends how much time my in-laws spent us while we were living in one and two-bedroom apartments in New York City (with two children), they are taken aback. How, they wonder. Yes, it wasn’t easy. But what made it work, especially when we were faced with Lil D’s devastating autism diagnosis when he turned three, was four adults who were committed to living together with respect, love, kindness, care, mutual support, faith and forgiveness.

We learned to live together, and we tried to make it easy on each other. This wasn’t just in-laws living with their son and daughter-in-law and their kids. This was a family coming together. This was me learning to understand how my in-laws wanted to be treated and appreciating all they did for us and our kids. This was them learning to accept my child-rearing methods, my American-Muslim-Indian ways and my obsessive tunnel vision when it came to Lil D and his autism.

I always knew I hit the jackpot when it came to family support and love (from my own parents and my in-laws). With autism thrown into our family mix, there were so many ways this could’ve played out. Raising a child with special needs, whatever those needs are, reveals in people what their truth is. There is no politeness you can hide behind. The best and worst of you are on display all the time within your family.

And over the years, we have clashed and shed tears. We have hid behind uncomfortable silence, and I’m sure we have held each other accountable for Lil D’s autism in different ways over the years. We wouldn’t be human if we didn’t do so. But we always come back together, and my in-laws have given us their unconditional support and reserved judgment as much as possible. Whatever they are capable of doing for us and their grandchildren, they do it – mind, body and soul. And we try to do the same for them.

Within my circle of autism friends (though I hate to label them as that, but it is autism that brought us together), we commiserate over family and friends who just don’t get it. Many families who have children with special needs get the short end of the stick with grandparents. I have my moments of frustration as well, but at the end of the day, I know how blessed we are.

A Dream Changed

My mother-in-law’s dream was for her son and his family to eventually move back to India to their family home. That dream ended when her son, my husband, came to the U.S. to continue his medical studies and decided to settle here permanently. The dream then evolved into having us visit frequently – that one year we would go to India and the next year they would come here.

But I gave birth to Lil D. And he was diagnosed with autism, which we came to learn was quite severe. Given all that, twice I traveled to India with Lil D, the last time being five years back when we took all of our kids, including  two-month old Hamza. It was after that trip that my husband and I decided never again. Unless there was a truly extenuating and compelling reason, we would not put Lil D through the difficulties of international travel to India as well as putting him in a situation that was so far removed from his routine for a long length of time. It wasn’t worth our sanity, his peace of mind, the money or anything.

And bless my in-laws – they never asked us to come to them in India as well. Instead, they came to us, enduring painful travel and the difficulties of packing up their home in India and opening it up again whenever they went back. They maintained two lives for us. For my mother-in-law especially, her heart was never completely at peace here or there.

We knew this traveling situation wouldn’t last as they aged. My father-in-law, with full love for his homeland and little love or connection with the United States beyond the fact that his children lived here, often stated in the early years of our marriage that he didn’t want to permanently reside in America. He would always be an Indian citizen. My mother-in-law refrained from making such declarations, but we knew her heart was torn between her children and grandchildren in the U.S. and her life and family in India.

The years passed, and we grew closer and more dependent upon each other, — to raise all our children, to help Lil D manage his autism. It became clear that they needed us as much as we needed them. They needed to be with us, to be close to us as they grew older and their health grew a little more fragile. And though they cannot physically care as much for Lil D as he grows bigger as they did when he was younger, their mental and emotional support as well as the attention they give to Amal and Hamza is immeasurable. And so we applied for their green card so they could be a legal immigrant here, which they got. And then, upon our urging and for the love of the eldest son of their only son, they took the plunge.

They applied to become citizens of the United States of America.

For parents to turn their world upside down for their children, well there’s nothing extraordinary about that. For grandparents to do so for the sake of their children and their grandchildren, well the magnitude of this is not lost on me.

Two months ago my father-in-law, mother-in-law and I stood in a Richmond, Virginia courthouse as he took the oath of citizenship. My father-in-law became an American citizen. I never thought this day would come. And last week my mother-in-law did the same. With her dupatta wrapped around her head, dressed in a traditional shalwar-kameez, left hand gripping the bench in front of her, she raised her right hand and took the oath of citizenship. When she walked up to shake hands with the judge who administered the oath, I stood with her and also shook the judge’s hand. “This is my mother-in-law,” I told her. “And my father-in-law became a citizen two months back. Now our family is complete.”

The judge smiled back at us. “Indeed it is. Congratulations.” I asked the women handing out flags if I could have three for our kids. And when we left the courthouse, my mother-in-law and I embraced, knowing full well what they had done for us, for Lil D, for themselves and for our whole family.

When the kids came home from school that day, I gave my mother-in-law the flags, and she put one in each child’s hand. She drew Lil D close to her: O meri jaan, o mera heera, dil ka mera tukra, heera mera moti. I love you Daanishu. (Oh my sweetheart, oh my diamond, piece of my heart, my diamond, my pearl.)

Lil D endured her embrace and pushed her away. He took the flag from her hand and wound his beads around the handle.

Turned that little American flag into a bead spinner.

And in that moment, all was exactly as it should be.

We’ve hit the middle of April, and while there was a flurry of focus on autism at the start of the month, it still is very much “Autism Awareness Month.” Awareness events sponsored by local and national organizations continue to occur across the United States, but sometimes I wonder how much real “awareness” is actually happening? How many of these events just serve as fundraisers for the organizations sponsoring it?

Fundraising is not bad, and of course autism organizations must capitalize on the attention garnered in this month. But, if you’re going to frame event as “autism awareness,” then there be some education happening to make people “aware” of what autism is, what it entails, how it can be manifested. (Unless it is a closed event just for the autism community) There better be autism ambassadors at these events making sure things go as smooth as possible for those with autism (and without) who attend said events.

My friend Harshita Mahajan took her autistic teenage son Sahil to an autism awareness event recently sponsored by Autism Speaks, at which her son had a lapse of self-control. What happened after that was upsetting and resulted with Harshita leaving with her son. For this to happen at an autism awareness event – well the irony is not lost on me. Read her story. Share it. Let’s make sure events advertised as being about ”autism awareness” educate people, not just fundraise.

Dear Autism Speaks:

I am writing to you to bring to your notice an incident that occurred at one of the recent Autism Speaks “Autism Awareness” initiatives that seemed to vitiate the very basis for which this event was held.

My son, my husband and I attended an ice hockey game at the Quicken Loans Arena in Cleveland on April 13. This game was specifically promoted as an autism awareness initiative. A bit about Sahil, my son — he has autism and has just turned 15. He has very high levels of cognition but presents as moderate to severely impaired due to sensory related behaviors and lack of fluent verbal skills. He loves these outings, despite sensory overload, and tries his best to exercise self-control. We are fortunate that he wishes to be part of society and actively seeks involvement.

He enjoyed the game and during the interval, we went to get a snack for him. While we were getting some GFCF (gluten free and casein free) hotdogs, a young girl passed by with her parents. She had a card with a string around her wrist. Unfortunately Sahil has an obsession for strings, and sometimes — very rarely — he blocks out everything except the object, including the human being attached to it.

He grabbed the string, scaring the girl. We finally pried the card and string out of his hand, but the girl was crying, and her parents very angry. They were unconcerned that he had severe autism, and they could not understand that he had not done this intentionally. They demanded that he apologize to their daughter, which he did, using his less than intelligible words.

Whilst my son’s behavior in grabbing the string left much to be desired in the eyes of society, what is highly ironic was that this happened at an “Autism Awareness” event. It was then that I realized that nothing had been mentioned about what autism IS throughout the event. All that had been talked about in the commentary was that the game was to raise autism awareness and an emphasis was made on the importance of donating, with a mention that five of the players’ jerseys were being auctioned off to raise money.

Should not raising autism awareness go beyond just introducing the public to the word “autism?” Shouldn’t such events actually educate the public on what autism IS and the challenges that a person with autism can have?

I was extremely disappointed with the content of the “autism awareness” dissemination, or rather lack of it. That is why I have taken the liberty of writing to you to express this anguish. Our children require more than donations for research. They require a society that understands and accepts them in their journey of becoming the best that they can be. My son did not ask to be born with autism.

I do hope that appropriate changes can be made to future autism awareness events by Autism Speaks, such that society understands a bit more about what autism is, rather than just being nominally exposed to the words “autism awareness.”

–Harshita Mahajan

But here’s the thing. That shouldn’t be our primary concern. Shaykh Omar Suleiman, instructor with the Islamic Learning Foundation, Mishkah University and Al Maghrib Institute said it best in his Facebook status:

“I don’t mean this to pick on anyone. I understand the fear of backlash if this attack was perpetuated by Muslims, but our primary concern should be with innocent lives lost.”

That the faith of Christians, Jews or any other religious group is not called so much into question when a terrorist attack is committed by someone of that faith – that is not what we need to focus on (as a commenter on Shaykh Omar’s thread suggested).

Our attention as humans witnessing tragedies around the world should be focused on the victims, their loved ones, first responders and those who help. The questions and investigations will of course happen. Of course we don’t want perpetuators of evil and violence to be associated with our faith, whatever our faith is. As my friend and colleague Elizabeth Scalia, managing editor of the Catholic Channel at Patheos says, anytime she hears of some sex scandal, she immediately hopes it wasn’t a Catholic.

But we are better than that. Let us think of those who lost their lives, who are injured, who are scared. Let us pray for them, for all of us, for violence to end in all its forms.

Another thing to note – comparing media coverage of different tragedies is also pointless at times like these. I read another update on Facebook shared by a friend of mine, from a man named Adham Sahloul, who has family in Syria:

“I will not call this a tipping point for me, but it sure is pretty close:

To those of us on Twitter and Facebook who dare to say “I wish people paid attention to Syria the same way they pay attention to Boston,” shame on us. SHAME on us. We’ve learned nothing, really. There is no competition in pain, suffering, or injustice. Injustice is injustice, regardless of where we are and what we believe. Are we so arrogant as to try to “remind” people, when the dust has not even settled in Boston, or even afterwards? Just how jaded are we? Are we that disconnected from reality and from our immediate lives? America is OUR country; these are OUR fellow citizens; this is OUR family. We should be just as angry, if not more, because this is happening in OUR own backyard.

My prayers to all those in Boston. May God guide us in the right direction and lift this sickness from our hearts. … may God forgive us.”

A friend of mine from the autism community was running the marathon today, as she has done so many times, raising funds for the Boston school that has done so much for her son. She is fine, thank God. Other friends are reporting that their loved ones who were competing or watching the marathon are also fine. But many are not. Two are dead, and latest reports say more than 100 injured.

Let’s send our prayers to them. Let us pray for no more violence.

He sits in the bathtub as the water fills up. I add some bubble bath and when the tub fills, I turn off the tap. He’s at peace, humming, gathering suds in his hands. I go into the bedroom to put the laundry away and hear the buzz of the Jacuzzi jets go on.

The bubbles have taken over, until Lil D is drowning in foam that spills over the tub. His sister brings up cookie trays, and we quickly scoop out the bubbles until we see his nose peek out.

And in that instant when he looks like me, I see the light of Allah.  I know he is One, without son or father. I know when I cannot understand the whys, when Lil D’s autism brings me to my knees, that He knows what I do not.

I heard a phrase once: Fake it until you make it. I falter in my faith a lot, but I am so thankful Islam offers me a way back through five daily salat, the fasts of Ramadan and so much more.

Through the word of the Quran, I know fa innal ma’al ‘usri yusra, fa innal ma’al ‘usri yusra. Verily with difficulty there is ease. Verily with difficulty there is ease.

To read more responses to this “Why I am a … ” series, click here. Bloggers from the Muslim, Catholic, Evangelical, Aethist and other Patheos faith channels are all weighing in.

“He (Musa) said: ‘Oh my Lord! Expand my breast for me and make my affair easy to me, and loose the knot from my tongue (that) they may understand my word … (Quran 20:25:28)”

One and a half years ago, I took the plunge and began sharing our son’s life lived with autism, my struggles with keeping strong in my Islamic faith and residing at this intersection of faith and autism. With a post on Ramadan Despair, I shared what was then my lowest point, and I had no purpose in laying bare our struggle other than I was tired of feeling alone.

And, if I was tired, I figured there were others out there who were tired of feeling alone too. The autism community is a passionate, active, fierce, supportive and combative group with a thousand different thoughts and approaches to autism spectrum disorder (ASD). But, we get each other (for the most part), what we are all going through. It may be a spectrum, and no two individuals with autism may be the same, but we are a tribe. These are my people.

But what about the Muslim community? Where are the individuals with autism and special needs in the Muslim community? Where are the Muslim families on this autism journey? Last year the Centers for Disease Control put the statistic at 1 in 88 – as in 1 in 88 children have ASD. Just last week that number was bumped up to 1-50. There has to be Muslims dealing with autism. My family can’t be it.

And we are not. In sharing our story, I’ve made numerous connections with others also living at the intersection of Islamic faith and autism. And, even more connections and friendships within the general autism community – the silver lining in all this, we say to each other.

And so as April rolled around again and World Autism Day came and went, I saw a growing sentiment amongst members of my autism tribe – that Autism Awareness Month is a has-been. If 1-50 school age kids have ASD, then we are well past the stage of making people aware of autism and must focus on acceptance and action.

That’s great. I’m all for that. Except that when it comes to the American Muslim community and beyond, we are nowhere near action. We are light years behind action. We are in the beginning stages of awareness. For a community well versed in fighting against Islamophobia, in running sophisticated campaigns to combat NYPD surveillance of Muslims or to reclaim the meaning of the word “Jihad,” engaging in social and political activism, hotly debating topics like homosexuality in Islam, equality in marriage, providing better space for women in our mosques, even whether “breathable” nail polish really is wudu-friendly  – what are we doing for our Muslim families dealing with special needs?

We are committed to owning our own narratives and taking action in many worthy arenas. But what about the most vulnerable in our communities? What of their families? What about the spiritual struggles of families with special needs — embracing them, including them, connecting them to resources, helping them in the myriad of ways that they need help? What are we doing for Muslims dealing with special needs?

Not much. And that’s unacceptable for our Ummah.

Where is the Awareness?

From the SMILE support group

Recently, at the first meeting of a support group for Muslim families with special needs organized by SMILE for Charity in New Jersey, parents of children with autism, Down Syndrome and other special needs broke down in tears as they shared stories: Stories where Muslims asked them what sin they must’ve have committed to be punished by Allah with a special needs child. Or a mother asked where the community support is for her as she ages? Soon she won’t be able to care for her special needs child. Or, the divorced mother working two jobs to provide for her special needs child, desperately wanting some help, some respite.

Salim Patel, chairman of SMILE, chronicled this first support group meeting for Altmuslim at Patheos. He said at first he felt like he didn’t belong, but the parents welcomed him warmly. “It was overwhelming,” he told me. “Our community simply is not doing enough. We are so, so behind, and this is just not within the teachings of our faith – to not be aware of what is happening with fellow Muslims in our community, to not take action, to not help.”

I hesitate to point fingers at an entire national Muslim community, to say that we are systematically failing our Muslim families who have special needs children and Muslim adults with special needs. Sweeping statements are problematic without the data to back it up.

But, I have been raising our son Lil D (with my husband and family) for nearly 13 years. And, in my journalistic career where I have covered Islam and Muslims in America for more than a decade – I’ve made a vast amount of connections within the Muslim American community.

I have yet to find an organization, a pilot program at a mosque or community center, an Islamic school that willingly serves and accepts special needs students, or even mosques or Muslim community centers that organize respite services or partners with local special needs organizations to offer informational sessions. I’m not a regular Jummah prayer attendee, but here in my local community of Richmond, VA, I have never heard a khutbah (sermon) addressing the importance Islam places on helping those who need our help most.

Forget Richmond, Va. Have you ever heard such a khutbah in your local mosque anywhere? Please, correct me if I’m wrong.

There is something seriously wrong here, folks. And I’m fed up. I acknowledge that our community is a few decades behind in support, funds, managerial and organizational skills than our fellow Christian  and Jewish communities. And, we are making inroads to establish ourselves as a presence in this country and be that backbone of support.

I look to the educational and spiritual gains of the Zaytuna Institute and the Ta’leef Collection, the groundbreaking charitable work of Islamic Relief USA and SMILE, political and social activism from Council for American-Islamic Relations (CAIR) and Muslim Public Affairs Council (MPAC) as well as so many, many other fine national and local initiatives and programs addressing so many facets of Muslim American life. Masha’Allah. Alhumdullilah.

But, what about our special needs population? We don’t even have the data examining how many Muslims in the United States are dealing with special needs. We aren’t seeking partnerships, we aren’t studying best practices. We aren’t doing an iota of what we need to be doing.  And families are feeling left out, spiritually bereft and disconnected. When will that change? How will that change?

In the autism community, we are moving on to action. In the Muslim community, we don’t even have awareness down yet.

Exceptions to the Rule

There are some groups though, some extraordinary individuals in the American Muslim community doing some marvelous things for families with special needs. Some on a large scale, some in a very quiet, local ways.

I love that SMILE has taken such a simple, yet important step of setting up a monthly support group for parents dealing with special needs. Just the act of coming together and sharing stores, sharing what helps, what resources are out there is so crucial.

Last spring, the Islamic school my niece attends in Maryland, al Huda, hosted a number of activities for Autism Awareness month in April. It’s the first I ever heard of an Islamic school doing that. My niece proudly spoke of her cousin, Lil D, and all that he is able to do as well as the challenges he faces. Those are the beginning steps of awareness we so need in our community.

And, what I hold dearest — our family has twice attended the Special Needs Eid Celebration in Northern Virginia, organized by MAS-DC (the Washington, D.C. chapter of the Muslim American Society). They have organized this event, which happens after the conclusion of Eid-ul-Fitr and Eid-ul-Adha, for three years. I cannot begin to tell you how wonderful this celebration is.

It is held at the MAS-DC headquarters and is open to special needs children (young and old) and their parents. This year, they were able to accommodate siblings as well. We made a special 1.5 hour drive to attend the celebration. Rasha Abulohom, whose brother has special needs, helps organize the event every year and has become a friend of mine.

Featuring a petting zoo, a train that the kids can ride on in the parking lot, moon bounces, arts and crafts activities and pony rides, the event understands the sensory needs of the kids. There are no time limits on anything, no age limits. No one looks twice of a child gets super excited, engages in atypical behaviors, has a meltdown or anything.

I remember standing at the bottom of the moon bounce last fall with another mother, whose daughter was perched on the divider between the slides. As the kids exuberantly bounced inside, my son included, her daughter bounded up and down with the bounces, flapping her arms in the air, smile on her face. She sat there for what seemed like forever, lifting her face up to the breeze, feeling the motion of the moon bounce in her body. Her mother just stood there, arms crossed, leaned back against a tree and soaked it in.

She looked over at me. I looked at her. Two women with our special needs kids thoroughly enjoying themselves amongst other Muslims. Both of us at intersection of being Muslim and living with special needs. Our eyes filled with tears. We didn’t say a word to each other. She knew. I knew. It was enough.

The best parts of the event were the photo studio and the mid-day Dhuhur prayers. In the studio, photographers patiently worked with each family to get the best Eid family photo. I have ours sitting on our bookshelf in the family room. It’s the best Eid-day photo we ever took. Later on, Rasha gave a speech about connecting with each other, supporting each other and keeping our faith close in our hearts and in our children’s hearts in whichever way we could.

Lil D and his Baba making tawaf.

The children lined up for salat in crooked lines, some wearing headscarves, others not. Some hummed and wandered off during the prayer, others stayed in line and prostrated like a pro. Some needed physical prompting. Lil D managed two sajdahs  (when you bow your forehead to the ground) in his own way – lying flat on the ground. As my husband said, they were angels in congregation.

The kids, with help from their parents, made tawafs around a large model replica of the Ka’ba as the Imam gave a short talk on what the Hajj is and made a du’a that someday our children would be able to make tawaf around the real Ka’ba. I don’t know if that will ever happen for Lil D. Allah knows best. But he made tawafs that day as his father pushed him around seven times in his stroller.

And I? I cried. I cry now as I write this. Our families were included, accepted, celebrated – such a rare feeling.

Where Do We Go From Here?

It’s easy to complain about what is lacking and much harder to get up and do something about it. Movements and initiatives begin, change happens when a person feels something is wrong, something is horribly amiss, and they are compelled to do something about it. So, perhaps the change we need to see in our community will only come when parents and families with special needs, adults with special needs rise up and organize to make it happen.

It is a tough, all-consuming life in raising special needs children. My husband always tells me that whatever change or awareness I am sparking through my writing sharing of our story – that I could make more of a difference by creating an initiative or organization specific to helping Muslims (and others) with special needs.

Certainly when I look at the local community where I live and see so many churches that offer monthly respite services, buddy programs for siblings of special needs children or religious services for special needs families, I know we must do something as Muslims. Lil D has taking special needs swimming classes at our local Jewish Community Services. We attend meetings and activities at our Central Virginia Autism Society, which is housed in a church. When I needed evaluations done on Lil D, a local Jewish Family Services organization was recommended to me.

There has been nothing extended to him from our local Muslim community.

The examples are out there, waiting for us to learn from them, partner with them. We, too, can serve all faith communities, starting with our own.

Change comes from within us. Maybe that change I am so desperately craving has to start with me. I’ve always said to myself that it is enough — the mothering I do for my kids, the advocacy, care and planning I do for Lil D. What more can I give? But Rasha is doing something. Salim is doing something. We can all be doing something. We have to.

If awareness is where we are languishing, then let’s own it. Awareness, acceptance and action. It’s time.