The blank screen on my phone stared back at me, waiting for me to write the last Ali Family Autism Truth on the last day of April — Autism Awareness Month. I was at a blank. How do I sum things up? Is that even possible? Because there is no summation to Lil D’s life with autism, or our life with him. It’s ongoing, and just because April was ending didn’t mean our autism truths were ending. Autism doesn’t end like that.
The last ten days of truths left me anxious, because there was so much to share, that which is difficult that which is eye-opening, that which is humbling and that which is utterly beautiful. But I knew that this was just a taste of things, and that I couldn’t ever really share our full gamut of emotions, struggles and wonderment with you all because our autism life is just that — ours. And so I hoped that by sharing some of what is ours, you would learn a little more, understand a little more and be a little more compassionate and open to seeing things differently when it came to individuals with autism.
So, here are my family’s autism truths. Hard-fought and hard-learned truths. I don’t normally do “30 days of something” or a “year of something.” I have trouble being consistent with anything outside of the routine of my kids and prayer and fasting. But I did this for April — Autism Awareness Month (which should really be Autism Awareness, Action and Acceptance Month). Thirty Days of Ali Family Autism Truths, written as status updates on Facebook — not reflecting all autism families or individuals with autism, because autism indeed is a spectrum — but truths from our life. There are beautiful truths, there are hard truths. They are all our truths.
Click here for the first ten.
Click here for the second ten.
April 21, 2014: Ali Family Autism Truths #21
We sat around the dinner table this evening and ate together – the inlaws, the kids and Lil D. All sat and ate independently and together. We have worked with Lil D to encourage independent eating at the dinner table for years. It’s probably the longest life skill he has worked on. Some months it goes well, other months he can barely sit for two bites. Most times he eats before us, preferring to be alone then having to face the sensory onslaught of mealtime with family.
This is one of the hundreds of daily things he works on – things anyone else would just take in stride. I mean, eating a meal at the table with people. How hard is that? Ohhhhh, but it is. And those rare times when he joins us for dinner and eats by himself, and then asks for “mo” (more), not for a second is the significance and specialness lost on me.
April 22, 2014: Ali Family Autism Truths #22
After his shower, Lil D’s therapist dressed him in a t-shirt. I was taken aback, but when he didn’t get upset, we decided to let it ride. Lil D’s been in a sensory juggernaut for more than two years now with regards to clothing – the more covered up, the better. Bare arms, legs and often a bare head bother him to an extreme.
I joke that of all my kids, Lil D is the only one who takes up the hijab (and being covered up) in solidarity with me. We’ve been trying to ease him into less and lighter clothes, but he isn’t buying what we are selling. this year when warmer weather finally hit, I began the de-jab process with shorts, and that he found acceptable. We’re easing the hoodies out as well.
Then tonight came the t-shirt. And, like a miracle, he wore it with little issue for a good couple of hours.
It’s huge. And I admire his courage for pushing himself. These are our victories.
April 23, 2014: Ali Family Autism Truths #23
There will come a time when I’ll leave this world, and so will my husband. And then who will help Lil D? Make sure he receives the support he needs, make sure he is safe and respected and loved, living a life full of dignity?
Oh yes, we are raising his brother and sister to do this. And we must trust Allah, this I know. And who knows how he’ll change and what he’ll be capable of doing for himself as he becomes an adult. But no one, and I mean no human being in this world fights for him, loves him and pushes for him like his father and I. No one tries harder to make this world better for him and help him become better equipped to live happily in this world, then us.
And truly, I know I should unequivocally trust that Allah will do right by Lil D when I’m around and when I’m not. But I’m human, and a future when I’m not here for him scares the crap out of me. So I try not to think about. But it’s a hard truth to ignore.
April 24, 2014: Ali Family Autism Truths #24
We had an IEP (individual education plan) meeting for Lil D today to discuss some recent, very difficult and painful developments that have occurred with our son. As we discussed — and I came close to breaking down — one thought kept occurring to me: Where is Lil D in the decision making for his life?
Autism is a spectrum, and people are affected to varying degrees. I’ve heard of other IEP meetings where the child is present and gets to offer his thoughts on the educational plan being shaped for him. But Lil D’s autism is very profound, and we’ve always ended up making decisions for him. Sure, we consider his needs, what’s best for him,how far we can push him and what boundaries we need to respect. I try and think about what he would want, how he would want to learn, what kind of supports he would want, what things he wouldn’t want. But dear God, I wish he could somehow tell us himself.
As I told the team, it just kills me to be the decision maker. If I make the wrong decision, if I make a mistake or miss something, he faces the consequences. If I push him to do something that later backfires, he endures the fallout.
I will make the best decisions I can and advocate for Lil D to the bitter end. But he deserves better. He deserves to have the ability to self-advocate. Dear God, give him that.
A few weeks ago, after nearly nine years of riding the big yellow school bus, after working so hard to help Lil D independently ride the bus and him working so hard to manage a hectic morning routine and sensory-laden bus ride all in the name of fostering greater independence, I decided we were done. That was it. No more yellow school bus for Lil D – it just wasn’t worth it anymore.
We have helped him work hard to gain many independent (and precursors to) living skills. And this is one of the longest-running skills we’ve worked on with him – the ability to ride the bus, which I hoped one day would be the precursor to independently riding public transportation.
But nope. It is just too hard. Maybe Lil D will come back to it, but it is just too hard for him right now. Living with autism is always always trying that which is very challenging. And knowing when to walk away, even if it’s nine years later. And then, if at all possible, no regrets.
School mornings are so much calmer now, aH.
April 26, 2014: Ali Family Autism Truths #26
Sometimes I look at my son and think about him, and I feel very bitter about so many things — how research and help, from medical interventions to therapies to support and understanding to education, are so much better now then the early years after he was diagnosed, and we struggled to do our best by him. How we spent so many years just trying to “fix” things without really trying to understand who he was, where he was, why he was, how he was and his perspective on everything. Bitter about mistakes made along the way, about challenges and difficulties he’s endured for so long. About the unfairness.
But bitterness gets us nowhere. This is a journey, and there is only one direction in which Lil D and all of us all can move – forward. Because it’s not over. The story has not ended. He – and we all – are just getting started on our happily ever after, no matter how hard we have to work to get there, no matter what kind of happy that turns out to be.
That’s an autism truth we must hold on to.
April 27, 2014: Ali Family Autism Truths #27
Today, as my mom in law, father in law and I were drinking chai around the dinner table, Lil D sat with us. We played a game: My FiL said to Lil D, “Appan dono dost?” (We are friends?) Lil D clearly said, “no!” Then my MiL asked the same question. “Ya!” he replied. I asked him. “Ya!” he said to me. Every time my FiL asked the question, Lil D replied “No,” or pushed my FiL’s hand away. I asked him, do you love me? “Ya,” he said.
The whole time he had a slight grin on his face. He was teasing his grandfather, and we all knew it, as we all laughed out loud. It reminded me – he is there. Inside that body, inside that mind so affected by autism, he is right there with us.
And none of us should ever forget that. Even when he seems withdrawn into his own world, he is there. The onus is on us to remember and find a way in.
April 28, 2014: Ali Family Autism Truths #28
Kids were doing homework after school today. I remarked to Hamza — look at all of you doing your homework! He said, Bhai (Lil D) doesn’t have homework to do. Yes he does, I replied. He’s working very hard to do his homework right now.
Hamza was doing some cutting and pasting, Amal was on the computer writing an assignment and Lil D was sorting silverware under the supervision of his therapist. That was after he completed some vacuuming, sorted his clothes and practiced watching TV.
Heck yeah Lil D has homework. He has been diligently struggling to learn independent living and leisure time activities for years. And it’s tough, like honors classes, AP class homework tough for him. And every minute accomplishment is a notch on his honor roll. While he is so different than his siblings in so many ways, he is also just like them.
As the saying goes – different, not less.
April 29, 2014: Ali Family Autism Truths #29
Autism awareness month is drawing to an end, but autism doesn’t end when April changes to May. Lil D is still autistic, still nonverbal, still everything. I’ve recently met several families whose children are newly diagnosed, and they are scared, overwhelmed, trying to figure things out, trying to see that their child has a future. That the door isn’t closed.
And it makes me look back at the 13 years that we have been blessed to have Lil D with us thus far. Ten years with Amal and six with Hamza. A lifetime still to go. It makes me think of every time I’ve failed my kids, of every difficulty Lil D has endured, of every time I pushed when I shouldn’t have, or held back when I should’ve pushed.
And, it makes me think of everything, everything Lil D has accomplished, learned, absorbed and taught us. He wakes every morning and trusts us to do right by him. He takes my hand and leads me forward, teaching me life’s greatest lessons, all through the grace of God.
To all you new to the autism journey, you will soon learn the truth that I know – our children make us, break us, and then make us again. And we are better for it.
April 30, 2014: Ali Family Autism Truths #30
Bismillah. Last one.
Once upon a time a man and a woman got married. They moved to New York, and all too quickly they had a baby. He was the most beautiful child ever to have been born. When the baby was two, he was diagnosed with delays. The new mom knew it was autism, but no one really believed her. When she gave birth to their second child (a daughter), her son turned three and was officially diagnosed with autism. He barely could speak, he had great difficulty sleeping, he was rather lost in his own world, and he never called his mother Mamma. The world began spinning awfully fast at that point.
A few years later the family moved to Virginia, and the parents began to help their child manage his autism with a new set of doctors and schools. Two years later the family welcomed a third child, a son. The baby suffered from allergies, and the mother feared he would be autistic as well. But that didn’t happen. The kids grew, the challenges and heartaches multiplied. But so did the joys and triumphs.
The couple is now nearing their 15th anniversary. Their kids, now 13, 10 and six, keep their world spinning faster than ever. And autism has colored every aspect of their lives, good and bad, messy and way outside the lines.
They have gained and lost friends because of autism, they have gained and lost faith, they have figured some things out while other things remain a frustrating mystery. Their eldest son still barely speaks, but he is understood much better. He still doesn’t call his mother Mamma or his father Baba, but he knows who they are to him through and through.
Once upon a time a young couple was blessed with a son. (And then a daughter and another son.) And autism became their son’s — and their whole family’s — truth, no matter how much they wanted and tried to make it false. It stayed their truth.
And now that’s the only way they know how to live – truthfully.