AbezAbez Is... 50% White, 50 % Pakistani, Muslim Hijab-wearing type female, Daughter of Momma, Sister of Owlie Wife of HF, Momma of Khalid, a special little boy with Autism, and Iman, a special little girl with especially big hair, Writer, Graphic Designer, Editor, Freelancer, Blogger, Inhaler of Chocolate
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My sister, De Owl

My Husband, who never updates!

Mona, who I don't visit enough

Hemlock, who I don't hug enough

Baji, the orginal robot monkey pirate

Prometheus, who buts brains to blog about Autism

Socrates, a blogger with Asperger's

Jo, a funnier Autism mom with a great blog

Autism Watch-  for logic-based information

ASAT- Assosciation for Science in Autism Treatments

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Saturday, September 26, 2009

What elephant in the room? I don't see any elephant.

So HF and I are hoping to move to Dubai soon, InshaAllah. Not only because our current house features four adults, two children, and only one bathroom, but because driving 120 miles before lunch time to get to Khalid's therapy center and back is taking its toll on me. And I don't mean Salik. Aching knee, aching back, steadily increasing inclination to road-rage- last week I actually passed someone in the fast lane by screaming past them on the hard shoulder. And I'm not an aggressive person, but I am quickly turning into a very frustrated driver as well as a very frazzled Momma.

And then there's the race to try to cram every possible errand into the limited amount of hours in town, because if you've driven sixty miles into the city you better make the most of it, and if you go grocery shopping you have to time it just right so that the chicken spends the least amount of time chickenly possible in the sauna of the car's trunk, thus minimizing the risk of giving everyone salmonella for dinner. But you also need to go look for a laminator, which is on the other side of town, so if you want to buy chicken, you should just buy it first so that you don't have to double back, but again, that means letting it stew in the trunk with the rest of the groceries, and the weather's cooling down, but it's still 100+ in the shade and poached eggs are nice but not a whole dozen of them. And if you have a physiotherapy appointment, then no errands are possible because physio starts at exactly the same time as Khalid's therapy, and you're always ten minutes late for it, and then you finish with just forty minutes before it's time to pick Khalid up again, and that's barely enough time to go to the grocery store let alone park and buy chicken, so there's no point in trying so you might as well just drive back to the center and wait for him to get out. And you can't really go shopping afterwards, because he is so tired that he's a three and a half year old wreck- crying because he doesn't want to go into the mall, screaming because he doesn't want to be in the cart, throwing groceries out of cart and kicking you as you try to push your way to the frozen foods aisle, wondering whether this whole eating thing isn't really overrated, and if chickens can fly, why can't they just be given directions to Abu Dhabi?

And in the spirit of ongoing medical misadventures, my Ramadan was punctuated with two trips to the ER for what turned out to be severe gastritis from a H. Pylori infection, and I missed five fasts being unable to eat and needing to take a slew of medication to help eradicate the invaders. And then there was Khalid's dental surgery- he's had four of his front teeth removed, about ten fillings, and two silver crowns installed, all under general anesthesia, for which he spent three and a half hours in surgery and eight hours in the hospital with. Alhamdulillah, it went well- he did fight the anesthetist, but his tantrum was gassed out in about ten seconds. When he woke up, he vomited blood, fought me blindly without knowing what was going on, pulled on his canula until we took it out, and then passed out again. He woke up a few minutes later and did the same, and then slept for a few hours, then drank some apple juice slowly and groggily, and then fell asleep again. We headed home at about 8 pm. And of course, he vomited in the car a few times, but Alhamdulillah it was just the apple juice- no more blood. We're waiting for his new teeth to be ready- and we're going to make another visit to the dentist for them to be cemented to his molars, and his four-tooth bridge will, InshaAllah, remain until his permanent teeth come in.

*taps fingers on keyboard*

Ok, I'm trying to write a nice, comprehensive update but I really have something else on my mind. I had a lovely time hanging out with two friends this evening, that is, until one of them asked me about Khalid's autism. It had been fun up until that point, and once she brought the topic up, I wanted to leave. I'm not comfortable talking about it. Talking about autism in general isn't that hard, it's Khalid's autism that presents a problem. I don't want to have to explain why I don't think it had anything to do with vaccines, how he had been slow and strange and distant from the very beginning, and how there are doctors and scam artists out there whose full-time job it is to take advantage of my desperation and sell me Miracle Cure Number #43, and how hard I have to work to not seek out and inflict bodily harm on people who put autistic toddlers on anti-psychotics. She asked me, as many other people have asked me, when I first realized Khalid was autistic. I don't think there was any shocking epiphany- only the dawning of a very unpleasant truth- of milestones delayed, even entirely missed, and worrying behaviors and repeated visits to pediatricians, of finally getting him assessed by a pediatric therapy team, and then a clinical psychologist, etc

But like I said, there was no instantaneous epiphany, only the heart-breaking realization that my foray into motherhood had been a nearly complete failure- that at the age of two and half, my son didn't talk, play, feed himself, respond to his name, seek affection, or handle disappointment or tiredness well. Also, he banged his head against the floor and kicked walls and started screaming if anyone laughed in his vicinity.

And I can talk about Khalid's autism here, because I'm sharing non-spoken thoughts with a word processing software. I'm not talking to anyone about this, I'm just thinking on paper. But I have a hard time talking about this, and it's always hard to hold myself together- to be informative and cheerful instead of depressed and terrified for my son's future. And then there are the well-meaning but infuriating questions like- have you tried making dua? I realize that people are simply offering what they feel as helpful solutions, but I am gobsmacked, utterly gobsmacked, that they would think that I haven't prayed, cried, pleaded, begged, and petitioned God with insane love and desperation for my son to be healed/cured/enabled to lead a normal life after I die, and dear Lord, please let me live long enough to see my children become independent. I have gone through some crazy things in my life, but nothing has tried my faith like this and forced me to have faith, really, to have faith that Allah does nothing without reason, gives no one a burden greater than they can bear, will reward me for my patience, and will take care of Khalid the same way He takes care of all of His creations. It's easy to slip up- not in the "Why Me?" sense, but "Why Khalid?"and "Why Autism?" And I must remind myself that Khalid is my test, and autism is Khalid's test. And it's just a test. And after it's all over, and the believers and the righteous are finally in Jannah, it will be asked of them whether they had ever suffered in this life. And they will swear that they never had, because the suffering we feel in this life is so minute, and so brief, compared to the reward and the contentment and peace and the perfection and resolution of Jannah. I desperately hope I'm included in that group, and I desperately hope that Khalid is as well.

HF says that I blame myself too much, that I blame myself for everything that goes wrong. He may be right, but I think all mothers consider themselves responsible for their children's welfare. Yes, I feel like Khalid's autism is my failure. No, it's not logical. No, telling me it's not my fault doesn't make me feel magically better. Yes, I know I can't cause autism. No, I don't care if you think I'm special-needs parent superhero. It's BS. I'm barely coping, I'm stressed out, I'm exhausted, and I'm scared of what the world will inflict upon my son when I can no longer protect him from it.

What's the moral of this story? Well, I guess if you are one of the many lovely, amazing, indispensable friends that I have who read this blog and may have asked me recently about Khalid's autism, please don't be offended. I have a hard time socializing with people, because going places with Khalid must be tightly managed, closely watched, and minutely scheduled to prevent meltdowns, but when I finally do get a chance to get out of the house without Khalid or Iman with me, please let me talk about nonsense. And please don't ask me about Khalid's autism.

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11 Comments:

At 27/9/09 11:20 PM, Blogger Saira said...

I love you for the sake of Allah, sis.

Take care of yourself and trust in God.

May He be with you always, bless you in all that you do, and grant you jannat ul firdaus.

 
At 28/9/09 7:11 PM, Anonymous pi said...

*hugs*

 
At 29/9/09 1:35 AM, Anonymous Anonymous said...

Q: What did Tarzan say when he saw 1,000 elephants coming over the hill?
A: "LOOK, there's 1,000 elephants coming over the hill."
----
What? you were serious about the nonsense part weren't ya?

-Uncle Vierdo...

 
At 29/9/09 5:37 AM, Blogger baji said...

i hope for nothing but the best for you and your adorable family and i'm praying for you as much as chickenly possible.

 
At 1/10/09 4:27 AM, Blogger yasmine said...

can i fedex you all the chicken in my home freezer, in an overnight package? the fedex plane can fly it over to you, and it'll land right in your front yard. (do they have front yards in dubai? i'm assuming they do, because if it's 100+ degrees in the shade, then maybe it's the front yards providing the shade. or something.)

thank you for trusting us enough to write out for us things that may be too difficult to discuss in person. may you and your familia have all the patience and strength you may need, and may you always be a source of joy for one another, inshaAllah.

california sends you highfives, you ROCKSTAR, and much lovelovelove for you and your familia.

 
At 7/10/09 7:43 AM, Blogger Mona said...

aw, reading about your trips made me tired. i can't imagine.
and come over, and we'll talk about all sorts of nonsense. i specialize in nonsense, did you know? i'm trying to get the husband to bring me to see you this weekend, so we'll dump the kids at home and eat cookies and talk nonsense.
*hugs*

 
At 8/10/09 10:57 PM, Anonymous Anonymous said...

dont worry everything will be ok Inshallah ...
hugs and prayers

 
At 20/10/09 10:51 AM, Blogger EnJay said...

all you need is a hug for yourself and your kiddos! :)May Allah bless you and your family and give a whole lot of patience and stamina to ya'll!

 
At 28/10/09 10:16 PM, Anonymous Anonymous said...

A Salaam Aleykum, I just found your blog. I know what you mean--my 20yo son has autism, and the hardest part of our journey has been...other people. For many years, we hid in the house, tired of dealing with the expectations of others. Then, I realized that we could give others the gift of learning from us, and that maybe, someday, some other mother would have an easier time with those people because they'd already met my son. It could be Allah's gift to them...through my dear son.

You didn't cause it. I didn't cause it. And, things will get better, when Allah is ready.

Blessings! Rabia in the USA

 
At 3/2/10 8:32 AM, Blogger hemlock said...

i dont think chickens can fly.

 
At 15/10/10 3:28 AM, Blogger American Muslima Writer said...

I'm glad you told us this. There are so many people out there with special needs and soemtimes those that aren't dealing with it dont understand the stresses of it and how utterly consuming it is.
They think you LIKE to talk about it (as for sure it's always on your mind). You dont have to explain anything really.

You are allowed to say and it's totally socially acceptable.

"I don't want to talk about it right now, I make du'a to Allah, let's talk about your new sofa pillows, aren't they beautiful......"
deflecting conversations.

By the way I love the posts where you're describing the relationship between your kids. I love when my kids are all lovey dovey because it helps me forget the times they pull out each other's hair. On the general do they get along better than they fight? As for mine it's a toss up.

By the way I hadn't realized you in Dubai now. In that case there are tons of Magrudy stores ( I work Deira City Center) I would love to meet you one day.

Hope the commute for Chicken is easier.

 

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