I've got three really good reasons why you shouldn't give me any money, and one really bad one. But first, some background information.
I've been leading a double life, and I have two entirely separate internet personas. One is the Abez you see here- I'm a writer, blogger, and mother of a seven year old on the autism spectrum. I also have a five year old who wears lipstick and a two and a half year old who draws on walls with it, and I've been blogging at Abezsez.com for over ten years.
My second persona is also of a special needs mother, but it also involves the founding and directorship of a not for profit autism intervention service, three years of parent counseling and training, and hundreds of hours of local advocacy to raise awareness about autism among teachers, doctors, and random people in elevators here in Dubai. By day, I'm Peter Parker. By night, I'm the Managing Director of AutismUAE.
I have tried my hardest to not let my two identities overlap, not only because it can make parent meetings a little awkward, but because hiring, firing, and invoicing take a certain strategic aloofness. It's hard to walk in to work and be all “I'm the boss, applesauce” if the people you're trying to boss have been reading your blog. Read far back enough and it's obvious that I have a carefully architected façade of directorial dictatorship that's meant to keep the ship running by day so that the captain can go and hyperventilate in a closet later at night when none of the crew is looking.
And that brings me to the first good reason why you shouldn't give me your money: It's a façade.
Not the organization- Oh no, AutismUAE is not a front or a façade for anything. When I hire ABA therapists, I fly to the Philippines myself to hand-pick senior staff from other intervention centers. My specialists are definitely for real. I employ a team of eight swiss-army knives. They are ABA therapists with a variety of backgrounds- child psychology, special education, occupational therapy, and good old fashioned education and nursing thrown in for good measure. The supervising therapist has been working with special needs kids for over 17 years and was once privately employed by a royal family in the GCC.
The letters from grateful mothers and excited teachers of the children are also completely genuine. They're printed straight from gmail to our collection of frames in our two-room office, and they are brief, humbling, and exhilarating reminders of how a child who can't speak can turn the words and thoughts of an entire community to their support.
So what's the façade again?
Oh right- me. I'm not an ABA therapist or a Board Certified Behavioral Analyst. When new parents call me- desperation quivering in their voices- they often address me as Dr., as if the obvious qualification required for someone running AutismUAE is nothing less than a PhD. I find it uncomfortable and awkward, but I have to explain to them that not only am I not a doctor, but I am also not a Special Educator, Behavioral Analyst, or ABA therapist. I'm not a specialist, I just hire them.
I'm also not a business person. Sometimes the irony amuses me- I founded a service with a clinical staff of ten and admin staff of three, I pay salaries, generate invoices, and make change for a hundred- but money terrifies me. It stresses me out. And that's my second good reason. I'm scared of money.
In an ideal world, I could counsel new parents, lecture at schools, and do parent trainings for AutismUAE and I would love my job- as long as I didn't have to worry about money- whether it was coming, going, or dancing the yolla- I wouldn't have to care.
But in the real world, underprivileged clients remain under-served clients because it takes money to pay staff salaries. We did try though, and I would like to say that it was a humanitarian win even if it was a financial loss, because the brother had three sons, and all three of them had autism.
He had- or has, rather- a lovely wife who cannot leave the house because she works full time caring for their sons, who are 8, 8 and 11. He has a young, neurotypical daughter who does double duty- as a student as well as a caregiver for her severely autistic brothers once she gets back from school. His three handsome young boys are nonverbal, not toilet trained, had never been able to afford intensive intervention and could not be admitted to even a special needs school given their level of function. The house smelled of urine and desperation. The mother looked as broken as the furniture.
So we did what any naïve, idealistic, bleeding-heart administration with no grasp of financial reality did- we hired a team and sent both members to the house four hours per day, five days per week. We paid out of personal funds and company savings hoping that we would be able to find a sponsor to cover the costs later. We collected roughly a third of what was needed. We applied for corporate social responsibility funding with the help of some very caring people in the banking community, but at the end of the day we were turned down for one really critical reason:
We are not a registered charity.
That's a good reason not to give us money, and it's been our ball and chain since founding day one. In order to become a registered charity in the UAE, you need a physical office located within Dubai (expensive), a full-time accountant on the business license's visa (expensive, my anxiety and I keep the books for free!), and a board of seven UAE nationals to apply. I'm not a UAE national, so I couldn't even be on the board of my own organization, much less fundraise. So that didn't get very far.
But you know, I feel less guilty about that now that I did previously because I met a founder of a huge UK-based charity.
He has a daughter with cerebral palsy and a refreshingly non-cynical approach to charity work and finances. And also, he has a saying. When I told him- very self-consciously- that we were not a registered charity in the UAE, he knowingly smiled and said, “Ask for forgiveness, not permission.”
After six months of therapy, both of the younger boys said that first words within a few days of each other. And after eight months of therapy we ran out of money and the team had to be diverted to a paying client in order to continue to pay their salaries. And now we're back at square one. The boys still aren't accepted into any school or therapy programs. And we aren't able to help them if we can't pay the team we assign them.
I find money both beautiful and terrifying. Beautiful because it can be the enabler of so much good- a life-saving surgery for someone with no hope left, education for a child who can lift their entire family out of fear and poverty, dignity for the elderly, and the erasure of sins for those of us who live in comfortable forgetfulness of accountability.
Terrifying because the lack of it means cold, hard, doors slammed in desperate faces. The real world doesn't care if I have amazing stories about what our children have accomplished, how many of them are now in mainstream schools, how many teary-mothers have cried on my shoulder, or how many thank you letters are framed on my office wall. The real world wants me to pay my licensing fees by the end of this December, or the real world will close my business down, and the real world doesn't care if the mom who owed me over $3,000 in back fees changed her phone number and wouldn't respond to my emails.
(“Listen, we're both special needs mothers, you have to trust me, I'll pay!” Thanks D. Thanks a lot.)
It doesn't care about bounced checks and senior officials with children on the spectrum who cannot be intimidated into paying their bills. It doesn't care that taking people to court costs more than the money they owe- or that a personal dispute between two of my staff caused four to resign and me to lose all the money invested in their training, visas, and tickets into the country- as well as tickets back out again.
Drop by drop a river has formed, carrying away tens of thousands of dollars
-through unplanned emergencies, non-payments, unexpected bills, and the innocent idealism of a director who hates money but somehow hopes it will magically appear so she can continue to ignore it.
But I think I've given you enough good reasons for you to not give me money. Now here's my really bad one:
I'm trying to retire. I know- great timing, right? I've been chronically ill for years, and I'm trying to transition the organization that I've built piece by piece, with my bare, untrained and un-salaried hands- into the hands of a larger, more competent, and more financially sound charity.
My staff, my children, and my legacy will be moved on the better, bigger things, inshā'Allāh- but before that can happen, I still have to pay my own bills as well as the loans taken to pay for our adventures in humanitarian cash-splashing.
I'm not selling the AutismUAE out for a profit, because it isn't a profit-making entity. I'm transferring the organization into bigger, stronger hands. But I cannot transfer my debts, and if I cannot settle them soon, there will not be an organization to transfer.
So to make a long story short, I'm not a specialist, business person, or anything near a good accountant. But I have been blessed- by the Grace, Kindness, and Bounty of Allāh, to have had over three years as the director of an organization whose work I am proud of, and whose staff I am honored to employ. I have a month to renew my license but none of the funds to do so. I have a larger charity willing to take me on, but I need to settle AutismUAE's debts before relinquishing my place at its head.
If I had more time, I could come up with a few more really good reasons why you shouldn't give me any money, but the good news is that I don't need to. I don't need your money- but AutismUAE does. Early intervention for autism changes the lives of families and children, and gives them the chance of leading a normal life instead of a life-sentence of dependence. In the past three years we've helped over 60 children, most of whom move on to mainstream schools, none of whom would have been able to afford intensive intervention at other, for-profit centers.
I'm retiring, and my son's early intervention days have passed, alḥamdulillāh. As a young mother I cried myself to sleep wondering if my son would ever talk, but as an autism veteran I know we're making slow but steady progress towards functionality. Khalid and I, we're doing ok, but every few minutes, another child is diagnosed with autism, and until a cure is found, 1 out of every 88 children worldwide is severely impaired in the ability to live a normal life.
Please, please, help.
Editor's Note: Muslimmatters endorses this fundraiser. The MM Family prays that Allāh uses all of us to ease our dear sister's burden and continue her legacy. Please help with any amount that you can afford- the goal is $10,000. May Allāh accept it from you. Please click on the link which will direct you to the AutismUAE gofundme campaign.-HZ