I have a day off today, Alhamdulillah. I got out of bed at noon, had two showers- one accidentally with a cup of tea, the other with the standard water- another cup of tea, a bagel, watched a Japanamation movie that I don’t know if I could ever sit through again, and I have studiously avoided doing anything useful, house, or work-related. Having spent fourteen hours in bed asleep (or something close to it) my feet are almost feet shaped again. Almost. Alhamdulillah. They’re not entirely unpuffy, but I have ankles for the first time in weeks- two of them! Thank you HF, for taking the kids to their grandparents’. You are the awesomest. I couldn’t have been happier if I had woken up to brand-new chocolate-covered minivan in the driveway. Really. This is too good. 🙂 And now, another luxury- to the blog!
So AutismUAE has been licensed and operational since late September of last year. We have only one more quarter left on the business license before it’s time to pay up the renewal fees, and in the mean time, we’re operating at…drumroll please… 2/5th of our capacity. Why? Because I issue visas for therapists and they sit for SO LONG in the Philippines consulate that I’ve had one visa expire before the employee could even get here and two more in limbo for over a month and a half. If I don’t get them in the country within the next two weeks their visas will expire AGAIN and the whole four-month process will have to start all over again.
Between these three and one more therapist who’s been stuck in Iran for the past week waiting for her employment visa to be issued (already, it’s a week late) I have had months and months of lost revenue, and for a business that operates at cost, that’s a kick in the teeth. How am I maintaining expenses? Loans. How long is our waiting list to get a therapist? Six to eight months, optimistically speaking. How am I coping with the 30+ parents on the waiting list? Not so well. One parent called me the other day (she’s been on the waiting list since January) for what is, I am sure, the tenth time despite being politely told, please don’t trouble yourself to call, when I have a therapist, I’ll call you.
(Yes, I know, time is of the essence when it comes to autism therapy for child. Yes, I know the early intervention window is running out. Yes, I know you’re desperate. No, I can’t do anything to make the therapists come faster.)
The conversation concluded with: These are our children, we need to get our act together. And I sympathize with the mother, I really do, but the presupposition that I’ve been sitting on my hands since January is what set my teeth on edge. I’m 9 1/2 months pregnant. I have a child with autism myself. I have a paying job in addition to this completely non-paying job, and between pulling my hair out as well as one can from beneath a hijab and running after visas, agents, freezone people, and documentation- and still meeting with parents individually as well as for the monthly support group meetings, I think I could redefine the word ‘overworked.’ Just maybe.
Then there are the parents who call every other week, despite being on the waiting list for only a month or so. And then there are the parents who want to know who they should follow-up with weekly once I am on maternity leave, and I say ‘just email me.’ And- here’s the hardest one- there are the parents who ask me for help. I know I would do anything for my child, and so I don’t expect other parents to try less. I get emails, I get parents on the phone begging, crying to me even, about how they cannot afford any treatment for their children, and is there no chance for any sponsorship or discount? Forget the mothers, the fathers cry. And I bite my lip and tell them I’ll put them on the waiting list for a service that is already marked down 60% from other centers, but that’s all I can do. And I hate myself for saying what it basically No, I cannot subsidize a service that is already provided at cost and when they finally hang up, I cry too.
Sometimes I worry about what would happen if one of my clients found this blog and started reading through all the AutismUAE posts- they would see past the shiny Director mask and into the world of a tired, complaining, pregnant, director and I think they would lose faith in me. Well, the good news is, I don’t have any faith in me. It’s all in God, and I need to stop beating myself up for not being able to save the world. I have tried my best to get five therapists on the ground running within my first year of business, but with three quarters gone I have two. We had to fire one already, and that was an amazing lesson, though I would have preferred to learn it when I was more financially stable and less in debt.
Sometimes I wonder whether all humanitarians eventually become misanthropes. Not that I’m much of a humanitarian, but already I dream in dirhams, and I calculate expenses by how many months of therapy such and such an item costs. I see a woman with a designer handbag and I want to beat her with it. Thirteen thousand dirhams for a small YSL bag is two months of help for someone’s child- two months of skills and hard lessons learned toward independence, maybe even speech. Two less months of fathers worrying themselves sick and mothers crying themselves to sleep because every day they watch their children drift farther and farther away from the outside world. Is that dramatic? No, it’s realistic. We waited only 3 or 4 months to start Khalid’s therapy, and every day was agonizing. It felt like watching Khalid die a little bit more every day as he became more silent, more withdrawn, and less and less likely to interact with us an any level whatsoever.
I’m starting to hate men in sports cars. I don’t want to start on what I could accomplish if some rich sheikh dropped a Maserati’s worth of money into my lap. Forget a Maserati- even a new corolla could set me up with an additional business license and five more therapists, bringing the waiting list down from thirty children to twenty, and although new children are added to the list every day, every therapist we employ makes a small financial margin that goes towards expansion, and the more therapists we have working the faster we can hire more therapists. It’s a catch-22 of sorts, and although we could expand faster if we charged more for services, if we charged more for services it would defeat the intention of making services affordable.
HF keeps reminding me that Allah knows and plans best, and the fact that there’ve been months and months of delays due to unforseen, uncontrollable, non-deliberate circumstances should only reinforce that. We’re not slacking off, we’re just being held back and Allah knows the reason. He’s the best of planners, and while I can’t really say that to a crying parent on the phone from an emirate that I can’t foresee sending therapists to for the next two years, remembering that will at least help me retain my sanity. Or at least my humanity. I don’t know, I feel tremendously disconnected from the people and world around me. No one else I know, no other friend of mine is pregnant, trying to run a business, trying to successfully parent two children- one of whom has autism- and is also an annoyed corporate communications consultant on the side. While there are overlaps of interest, as well as a few really lovely people who will listen to me no matter what I’m talking about, I have so little time for destressing, socializing, or even holding still for very long that I’m starting to wondering if I shouldn’t come with a warning label: Contents under pressure.
(The sticker should be big and orange, and it should be stuck to my feet- they’re generally so swollen they look like they could explode.)
Maybe I should write out a list of topics that one should avoid in talking to me: Khalid’s apparent ‘lack of autism’ being one of them. Another mother at the school was accusing Joy of looking too much into Khalid’s ‘disability’- “There’s nothing wrong with him! Are you sure he has a problem? Look, he’s fine!” and while it’s a relief that Khalid can ‘pass’ for normal to a casual observer, it’s a slap in the face to be told ‘You’re so wrong, you’ve been making it up and imagining a cause to spend so much money on therapy you’re in debt and so much time worrying that it’s made you see ‘special needs’ everywhere you look!’
The insinuation is either that we worry for no reason or we’re making it up to get special treatment. Joy is more patient than I am, and she just said thank you we know he has autism and he’s made wonderful progress. But then the mother pushes, because she’s a doctor, and demands to know who stuck the autism label on Khalid and how they went about doing so. Because you know, as a dermatologist, she’s qualified to judge these things.
Excuse me, I think my misanthropy is showing.
I digress. Sometimes it feels like my world is divided between people drowning in autism and people refusing to believe in it. On one hand you have people write off the years of blood, sweat and tears with a wave of their hand- Oh no, he’s fine. I’m sure you were just imagining it all along. On the other hand, you have parents who are trapped living the same nightmare we were less than three years ago, and my inability to do anything for them puts an additional heaping of misery on top of my frustration.
I tell the parents- I know what you’re going through, I’ve been there myself and I’m working as fast as I can- but I know that when you’re at that stage you can’t believe anyone has it as badly as you do. I remember talking to another mother- she was crying of course- about how she was so exhausted because her child wouldn’t go to sleep for two hours the other night, and then woke up again. When I told her I could sympathize, she said really it’s so hard and I said yes, I know- Khalid fought going to sleep every single night of his life until he was almost three, and even then he would wake up every two hours kicking and crying. Every night. So yes, I know. And I’m still trying to get you a therapist as quickly as I can. And one father told me with tears in his eyes- you don’t understand- my son hits and kicks and pinches his mother and she’s nine months pregnant! And my mind went back to life with Khalid just before Iman was born- I’ve been nine months pregnant with busted lips, scratched face, and bruises from the daily battle of the daily everything involved with a child who has no idea what you’re trying to do and no idea what he’s doing to you. It got so bad that I would have to keep Khalid at arm’s length. If I saw him coming towards me I would have to deflect him and move away, because his only way of communicating pain, frustration, or want was to pull, hit, or fight until I understood what he needed. And I know there are cases more severe than ours, much much more, SubhanAllah, but I get so tired of trying to convince people that the delays we’re facing in getting them a therapist have nothing to do with me not caring, not trying, and not putting everything I have into AutismUAE.
SubhanAllah. I do have some happy thoughts, really.
Happy Thought Number One: I got the nicest SMS from a father making dua for our success and that Allah grant us Jannatul Firdaus. And that made my week, and it still brings a smile to my face, because AutismUAE has two goals, one of which is a halal, sustainable operations and the other is Sadqa-e-Jaariya. Charity that keeps on giving. We may be really, really struggling, but at least we’re not in danger of having to close up shop -yet- and I can’t think of better business ROI than duas or better KPI’s than your customers praying for you. 🙂
Happy Thought Number Two: The Al Noor Training Center for Special Needs opened in 1981 with eight employees. When I popped in for my first visit last week to their huge facility in Barsha, I saw an entire fleet of school buses. And they started with eight people when I was a one year old! It takes time, it takes patience, and according to the logos on the back of the buses, it may also take corporate sponsorship from HSBC. Hey, a fleet of buses doesn’t pay for itself! Or, maybe, it could. 🙂
Happy Thought Number Three: Hey, InshaAllah we’re having a baby! 🙂 Not yet though, but soon InshaAllah. Any day now. For Iman it’s not soon enough. The other day she climbed into my bed, first thing in the morning, and poutingly demanded “Momma, where’s my baby ___________?” (gender-specific designation censored 😛 )
Happy Thought Number Four: Khalid has started to hug and kiss me of his own imitative, gently and without any of the ‘peck and go’ of a little boy who’s just kissing his mother because his therapist told him to. It’s become a natural behavior to him, and I’m still bowled over every time he climbs through the car before going to school to put a kiss on my cheek that I didn’t ask for. I absolutely love it. He climbs in bed with me and puts his head on my shoulder and lays there happily, not wrestling or bouncing or looking for my phone, he’s just cuddling with me. And I lay there with him feeling melted and happy, and when Iman comes in she kisses me sweetly and cuddles up on the other side and we have silly conversations and the two of them tell me all the things they’ve been waiting to tell me since they woke up a WHOLE TEN MINUTES before me and they’re still in their pajamas but they have things to tell me that just cannot wait.
Hmm, this post has gotten really long. I suppose that’s alright considering that I don’t know when I’ll have another opportunity to sit uninterrupted at a computer while simultaneously ignoring work email. I’m on maternity leave, gosh darnit! I am leaving my phone on silent and my pajamas on the bed, because two hours from now I’m going to put them back on and not get out of them until we run out of groceries!
Though if you happen to be a rich sheikh and you feel like dropping any amount of money in my lap, I promise I will answer your email right away. Everyone who isn’t a rich sheikh, please just remember us in your duas for an easy delivery, a healthy baby, and successful operations for AutismUAE. JazakAllahuKheiran!