April is Autism Awareness Month. And as much as individuals with autism and those in the autism community feel that we are waaaaaaay beyond awareness and must be focused on action, I’ve come to realize in my nearly three years of chronicling our autistic son’s (and our family’s) life — there is still so much people don’t know or understand. For those who do not directly know someone with autism, they are still so unaware.
Unaware about what it means to be autistic, what sorts of challenges and difficulties it poses. What sort of joys and happiness it can bring. How vast the autism spectrum is, and how each autistic individual, each autism family’s journey is unique to them. Unaware of the challenges and approaches to life, of all it takes to navigate and live a life of dignity, a life that demands respect from everyone around. Unaware of how this turns every paradigm we know, how this changes every thing we see and every breath we take. Unaware that there are medical interventions and comorbidities that can be addressed to improve the quality of life. Unaware that no one treatment works for everyone. Unaware that not everyone with autism thinks they need to be “treated” or “recovered.” Unaware that those with autism and their families have vast and varying approaches to the disability.
So, on a whim, I decided to just focus on 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’m giving this a shot 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.
Here are 1-10.
Ali Family Autism Truths, April 2014
April 1, 2014 – Autism Truth#1
I share because this is tough. Really, really tough. But also so, so good. I share Lil D with you because he helps us cut through the bullsh*t within ourselves and in our communities. He helps us really truly realize what is important, what matters, the beauty in the smallest of moments and gains, and true appreciation for so much others take for granted. I share because Muslim and Desi culture in the past has been to keep disabilities and special needs on the down low. And I just don’t think that’s right.
I share because I hope Lil D will help you realize this, too.
April 2, 2014, World Autism Day – Ali Family Autism Truth #2
Light it up blue, don’t light it up blue. Believe in recovery, don’t believe in recovery. Think that autism is medical, think that biomed interventions is hoo-haw. Be angry with autism, believe that autism is an intrinsic part of you or your loved one and to think it bad would make you or your loved one bad. Believe that God blessed special parents with special kids, believe that is the biggest load of hooey.
The Autism Community is a fierce, strong community of varied opinions and beliefs. All I’m sure of for Lil D and our family is this: My son is the hardest working, most innocent person I’ll ever know. We need to give him and all others with autism huge, mad props for trying their best to live their lives in a world that often doesn’t make sense to them. And we need to do our part to make this world more accepting and loving and better for them. At the end of the day, the only truth is love.
April 3, 2014 – Ali Family Autism Truths #3
In our home, it takes a lot of family and friends coming together to be able to manage everything — grandparents, siblings, therapists, babysitters and so on. We are incredibly blessed to have many loved ones in our lives who care about Lil D so much and all of us. I know many autism families who are much lonelier in their journeys, not getting the support they need from family, friends or both. Many can’t afford to hire help.
This journey for individuals with autism and their families is incredibly difficult without support. And if the only truth is love, then there is a lot of truth in our lives. I need to remind myself of this especially when things look the darkest.
April 4: Ali Family Autism Truths #4
Sometimes the loud and intense sounds Lil D makes when spinning his beads on a pen, spoon, toothbrush or chopstick can pierce my brain in the most unpleasant of ways. Sometimes it is music to my ears. Because hey – that’s my boy. That’s what he does. Spinning beads has been his longest-running stim to date. A stim is a self-stimulatory behavior, and with Lil D, the spinning of the beads is most often paired with loud vocals. We try and teach him to tone it down in settings where it may be inappropriate, but we also very much respect his need to do it to ground himself.
We order 100-count packs of beads once or twice a year, because he’s always losing them. I carry them in my purse, in our car, stashed at my mom’s house, most everywhere. People often compliment me on my cool wrist jewelry. I just have Lil D’s beads wrapped around my wrist. Everytime I find one on the ground where he has discarded it, I pick it up and wear it on my wrist — beads at the ready.
April 5 – Ali Family Autism Truths #5
Fa inna mal usri yusra, fa inna mal usri yusra: Verily with hardship there is ease. Verily with hardship there is ease.
Even when we struggle to believe.
April 6, 2014 – Ali Family Autism Truths #6
We have three children. It’s a lot of love, and it’s a lot to manage. Sometimes I feel stretched, that l can’t do or try everything I want to do or try for Lil D because we have three children. But this family is incomplete without Amal and Hamza – not just because of their relationship with their big brother and how he shapes them as humans, but because of them. Just as they are.
They are good, good kids. And what they contribute to this family makes this not just an autism journey, but our family journey.
April 7, 2014 – Ali Family Autism Truths #7
Headbanging and SiB (self injurious behavior) are words anticipated and accepted by my phone’s autocorrect. And we’re not talking headbanging to Metallica. Three years ago it was absent from our vocabulary.
Autism is a vast spectrum, and while I know autistic self-advocates cringe at bad mouthing autism when it’s a part of their whole being (and I respect that) there are so many times, especially when I look at the ups and downs of Lil D’s last three years, that I wish he were free of all the unfair, painful struggles autism has brought to him. Just keeping it real.
Love my boy just as he is. But it’s just not right what he deals with. It isn’t.
April 8, 2014 – Ali Family Autism truths #8
Lil D has a lot of difficulty communicating. He is nonverbal, but he always has something to say and an opinion on the decisions of his life. We have spent his lifetime (and will continue to do so) helping him find a means to communicate, working to figure out what he is trying to tell us.
It kills me that we don’t always understand what he is trying to say/convey. And the very least we can do as his family and community is try our best to really hear him.
April 9, 2014: Ali Family Autism Truths #9
I mean, really – I’m reminded of the first autism parents seminar series Taruj and I attended in Manhattan at Lil D’s first autism school when he was three years old. Program director Dr. Bobby Newman was teaching us what autism was. We had no clue what was to come.
He said, no stigmata – individuals with autism look like everyone else.
I still remember that every time I look at my handsome son.
April 10, 2014: Ali Family Autism Truths #10
People often sympathize with me or say, May Allah make it easy for you.
No – may Allah make things easier for Lil D. May his life be at ease and full of peace and happiness. May he live as healthfully and safely and as independently as possible. If that happens, then inevitably things will be easier for us.