In Autism Land, What is a Good Day?

The house was too quiet last night, as my husband and I sat on our couch after all kids were in bed, half asleep and tired from the past two weeks of activity. It was a good tired, as my husband remarked to me, “That went well. That was a lot of fun.”

He was referring to the lead-up to our youngest son’s Bismillah ceremony, the Bismillah itself, and the week afterwards when his sister and her family stayed with us. The weekend of the Bismillah (a culturally-based religious ceremony where a child repeats an ayat from the Quran as a symbolic gesture that he/she is ready to begin learning how to read the Quran), we had 24 family and friends come from out of town for the event, ten of whom stayed with us at the house.

I had been pretty nervous the weeks prior to the Bismillah, worried about how Lil D would handle the influx of family, the noise, the chaos, what would happen when he had a meltdown, and how we would manage everything. I prayed as hard for his dignity to be protected as I did for Hamza to behave well at his Bismillah.

God was with us, as Lil D’s twice-daily self-injurious behavior-driven meltdowns (usually twice daily) both occurred before the major influx of family arrived at our home on Saturday. And on Sunday, he had one meltdown in the morning (as usual), before most everyone had woken, and a second one in the afternoon after most everyone had left. While everyone was here and the kitchen was in an uproar, he pretty much stayed upstairs in his room, occasionally ducking downstairs to see what was happening before high-tailing it back upstairs — survival techniques.

Even in the following week, while my sister-in-law and her family stayed with us, Lil D stayed, for the most part, even-keeled – especially in comparison to how many meltdowns he had been having weeks before. He was unable to join us in most of the activities we did with our family – a day-long trip to Busch Gardens, an evening visit to the local botanical garden, an outing to see the movie “Brave,” and so on. Most meals he ate in the quiet comfort of his own bedroom at the little table I set up (not much unlike from what he did when it was just us around).

Really, there were only two BIG meltdowns during the week, as well as several shorter intense ones. The adults enjoyed together, the kids stayed up way late and giggled and hooted and had loads of fun. We all ate all our favorite foods, diets be damned. It was, like my husband remarked, a pretty good two weeks.

I was happy too, and grateful to Allah, but not as grateful as I should be. I think I am inclined towards ungratefulness, and may Allah forgive me for that. The weekend was wonderful, yet so bittersweet.

Grateful and Ungrateful

After our Memorial Day –weekend trip to Toronto, when we left Lil D at home with my brother (and his family) and my mother, I came back thinking that there was no way I would be able to host family and friends and have this Bismillah for Hamza. Lil D had such a bad time that weekend, with nonstop meltdowns filled with SiBs, and the subsequent last two weeks of school were so tough (with the beautiful exception being his Fifth Grade graduation ceremony), that though time inexorably marched forward towards the Bismillah, I despaired how we would ever pull it off.

But here we are, with everything done, and by the grace of Allah, we did pull it off relatively unscathed, dignities intact. And yet …

Lil D did not come to his brother’s Bismillah. Though my husband and I said “We’ll see …” to each other, we both knew he wouldn’t be able to tolerate that type of party at this time, and I made babysitting arrangements for him. Though my mother-in-law had a special sherawani (traditional Indian outfit) sewn for Lil D, he did not wear it. We took no pictures with him with the family before the party.

Upon my mother-in-law’s request, a few days later I wrestled with Lil D and got him to wear the sherwani, and we tried to pose him with Hamza in his Bismillah sherwani for a picture. It went badly. That disastrous photo-op resulted in another meltdown, which I felt bad about because we had induced it.

On July 4th, we had a grand, delicious family dinner cooked by my mother-in-law for her daughter and son-in-law’s 14th wedding anniversary. I set a formal dinner table in our rarely-used dining room, and all kids and grownups joined in for the meal. Lil D, who had eaten an hour earlier, kept to his room. The next day, before my sister-in-law and her family left, we all gathered for some last family photos. I tried to entice Lil D to come and join us, but he began his familiar hyperventilating, so I let it go.

What Constitutes a Good Day?

Perhaps I’m nitpicking. Perhaps I need to focus more on the bigger picture, like my husband is doing. I need to be more grateful for all that went well, all the happiness we enjoyed, the laughs we shared, the fun my other children had with their cousins, how we were able to host a lovely large party for our family and friends, how Hamza repeated lines from the Quran and followed my instructions and said “salaam-alai-kum” to all his elders.

But, I am reminded of a conversation I had with one of my dearest friends, who visited me from California with her daughter the week before the Bismillah. She had been reading my posts about Lil D’s self-injurious behaviors — the extent and intensity of it — and now that she was in my house seeing what an entire day was like, it didn’t seem as bad as what I had written about in the months past.

She asked me, “So is this a good day?” And I replied that it was.

But, what is a good day? If you compare these days to what Lil D (and us as his family) had been enduring the past several months, then these were – are — good days. But in my perhaps overly-critical, always looking for more, type of mind, these may be good days, but they are not enough.

I want even better good days.

I want good days like when Lil D came with us and my husband’s other sister and her family to Busch Gardens for a day trip in 2008 – that trip when he even sat on a roller coaster. I want good days like when we had Hamza’s aqueeka party (a party we hosted after Hamza was born), and Lil D (and a babysitter) attended that party and stood briefly for a few photos. I want good days like when Lil D did not spend the majority of his day in his bedroom away from everyone else, in avoidance of social contact.

I am grateful, yet I am ungrateful. I am happy for our blessings of the past two weeks, yet I am unhappy and desire more.

May Allah forgive me, and may I learn to be more grateful as I fight for even better good days.

 

About Dilshad Ali
  • KM

    Thank you, Dilshad, for this tender peek into your family’s life. You are so gentle with Lil D. Be just as gentle with yourself. 

  • Maryam

    Good days there will be my dear Dilshad D. Ali….when they matter most. Your son is promised eternal bliss inshallah. How many of us can confidently say that? May Allah give you strength to endure this tremendous trial… always in my thoughts and prayers

  • Elizabeth V.

    It doesn’t help neurotypical kids to behave well when a parent is overcritical and unhappy, how that can be useful for autistic ones????

    Take one day at the time and focus and the possitive.

    • Danisul

      Wow, that’s uncalled for. 

    • Dali

      Hello Elizabeth V. I guess my initial reaction to your comment is to be a little offended, but I see what you’re getting at. It’s something my husband and I discuss a lot – something that takes me back to a convo we had with another doctor/autism parent when we got Lil D’s diagnosis 10 years back – work on being happy. Relish happy times, fight for happy times, appreciate happy times. I assure you, I do appreciate happy times. I am not an unhappy person. But I would be remiss if I didn’t admit that it is a struggle – to temper the gratefulness with the ungratefullness, the happiness with the unhappiness. I think I do a pretty good job with it, but I fall from grace from time to time. Thankfully there is a wonderful support system around me.

      As for overcritical – that’s directed at what I want for my son. I am not overly critical of him, I love him for who he is. But I know there’s more out there for him, and that he can learn more, get healthier if I can keep him on the right path. The overcriticalness is directed towards myself – again, fine in manageable doses, but unhealthy if it gets too big.

    • Guest

      Let’s at least avoid trolling on Patheos. Please.

  • Danisul

    It is not bad to want better good days or more good days. It just means you want your son to be happy! There is nothing wrong with that; that is not being “ungrateful”. 
    These behaviors (which my 18yr old son also engages in) are communicating something (or a variety of things). It has taken me a long time to appreciate and savor (even celebrate)  each good moment, while putting the difficult ones into a different place – we deal with those days / moments and move on. Sometimes it can be a long wait for the positive moment; during those periods, we remember the previous good days and work hard to solve the current issue. We are always pushing for more, better, good days. Why wouldn’t we? Everyone wants the best for their children, parents of children with autism are no different.

  • Ireneswval

    I just want to give you a hug. You only want the best for everyone and sometimes what we see as best isn’t what we are given. It sounds like your son participated as much as he could and is probably grateful to you and God that you did not force the issue.

  • Sales

    I hope your mother-in-law wasn’t too upset about your son’s lack of interest in the specially made sherawani. Family pressures can be tough, and our parents’ generation isn’t always as accepting as they could be. ~ Peace.

  • Nisrinb64

    Love reading your Blog. You are doing a wonderful job , self doubts aside enjoy these moments and treasure the memories.Salaams & dua  to you and yours.


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