Ingratitude in the Face of Gratitude – the Autism Oxymoron

Ingratitude in the Face of Gratitude – the Autism Oxymoron July 26, 2013

I finally broke at 1:02 a.m. this morning – July 26, on the 17th fast of Ramadan the day before our big trip. The deluge began with this text to one of my best friends:

“I am so sad to leave Lil D. Eff autism. Not fasting right now – I can say that, right?”

To which my friend replied, “I’ve been waiting for this text …”

And I answered, “Eff eff eff eff eff autism. He should be coming with me. … I should not be leaving my son for a month. … I’m feeling like a bad mom …”

And we went back and forth, our fingers flying over text for the next 15 minutes while the tears that I had held back, that I thought weren’t necessary, came streaming out.

We are leaving tomorrow for an international trip that has been two years in the making – we are going to India — my husband’s home country, my ancestral home – for one month. We, meaning me, my husband, Amal and Hamza.

Not Lil D.

I’ve been mulling over these feelings in my head, trying to reconcile the various dichotomies of this situation. On one hand, how can I even remotely complain? We are going on a month-long vacation to India. I will be leaving behind work, home responsibilities, and yes, to a great degree my autism responsibilities to reconnect with India, with family I haven’t seen in years, with elderly relatives who have little time left on this earth. I will be letting go and hopefully fully enjoying this trip.

And to do this, many stars have aligned, many people have sacrificed, and many ducks have been carefully and fragilely lined in a row. My parents and my grandmother (who lives with my mom) arrived yesterday to stay a month with Lil D. My parents have cared for Lil D before, though never this long, And truth be told, every time they do so Lil D is a little bit different, with new issues, new likes and dislikes and new behaviors to contend with .

We chose this particular time for our trip for several reasons – Lil D is in summer school and having him in a school routine with his afterschool therapy makes for an easier time for his caregivers. His time will be occupied; he has many people looking after his wellbeing. Leaving at this time also allows us to complete our Ramadan fasts in India, and it has been a long-cherished wish of mine to experience what it’s like to fast somewhere other than the United States. We will celebrate Eid-ul-Fitr (the holiday that comes at the end of Ramadan) with my in-laws in India, something our younger two kids are incredibly excited to do.

We will be celebrating Eid-ul-Fitr without Lil D. Something I’ve never done before.

I have a wonderful team of therapists (who are like family) in place to continue working with Lil D after school. I’ve also arranged for a babysitter to come on weekends and hang with Lil D as well for a few hours to give my parents a break. My brother and his family will be flying into Richmond from Texas for a few days to celebrate Eid-ul-Fitr with Lil D and my parents. And my husband will return from India 10 days before me, so Lil D will get to enjoy that one-on-one time with his Baba that he so craves.

These are all the things I’m telling myself to remind myself how blessed we are. How grateful I should be to everyone all around for making this trip possible.

I’m also reminding myself constantly that taking Lil D with us would be an exercise in stupidity. We’ve traveled extensively with him, twice in fact to India (when he was 2.5 and 7.5 years old). It was after the last trip, nearly six years back, that my husband and I decided never again would we subject him to international travel on that scale. (Well, in my heart the only exception I’ll make is if we get an opportunity to take him to the Ka’ba in Makkah.)

That trip, when we also had a three-month-old Hamza and four-year-old Amal with us, is a blur of opposing memories. Good times, seeing family, visiting old friends, shopping and eating – yes. But also the constant mental tension that was upon us to manage Lil D was tough. He was out of his element, away from his routine, thrust into the proverbial foreign landscape. What I remember most is the last week – a week when he cried and wailed nearly nonstop. We all desperately tried to do whatever we could to calm him down. My father-in-law would take him for long drives around the city, because driving seemed to distract him.

I literally counted down the days until we could go home again. And yes, the plane ride back was fairly miserable.

That was a seven-year-old Lil D. He is just shy of 13 now, and has grown and developed in a myriad of ways. His physical size coupled with his intermittent meltdowns, self-injurious behavior and aggressions has made a 14-hour flight not an option. Plus, there is no way I’d subject him to the routine-less lifestyle of a four-week vacation. Hell, this kid loses it during a two-week winter break. One week off from the routine of school, home and therapy is about all he can take.

So taking him with us wasn’t even a consideration when we decided to visit India again. And, with how both sets of our parents are aging, we knew that this would probably be our last shot to do something like this.

These are the things I’ve been telling myself for the months leading up to this trip. And it has sustained me – made me grateful and thankful to Him for all this to happen. Until now.

I hit my wall in the wee hours of this morning. This isn’t fair by any means. I am not thankful. I am not grateful. We are getting a well-deserved break. We will be having a memorable, good time. But when does Lil D get his break? When does he get a break from his autism? He will still be getting up at 7 a.m. and getting on the bus to go to school. He will work hard at school, come home, have a snack, chill for a bit, then work for two hours more with his therapists. He’ll eat dinner and go to bed around 8:30 pm and do it all over again the next day.

He will every second of every minute of every hour of every day deal with and manage his autism — the sensory issues, the communication frustrations, the internal issues that turn each day into a tightrope walked with trepidation, determination, uncertainty and difficulty. And the one person who knows him best, who has nearly 13 years of institutional knowledge on how to help him, care for him, love him, and help him manage himself as best possible – well she will be gone on vacation.

Forgive me Allah. I am fasting, and I ask your forgiveness for my ingratitude: Eff autism.

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