Moments of Autism Humor – Lil D Was Here

May 17, 2012 By Dilshad Ali Leave a Comment

Good morning, sunshine! Wake up my jaanus (darlings). Time for school. It’s wakey wakey time! La illaha, illallah, Muhammad dur Rasullallah.

This is what I say every morning, without fail for the past nine years, as I’ve woken up one, then two and now three children for school. It’s become a routine, something that comforts all of them, even when they are grumpy, whiny or tired and not wanting to get up – a good morning greeting followed by the kalma, or shahada, which is a Muslim’s declaration of faith. (Often one of the first things Muslim parents teach to their children.)

Lil D and his sister wake first (around 6:15 a.m.), since their busses respectively come at 7:05 and 7:11 a.m. Hamza, if I’m lucky, sleeps through the initial morning rush, and then I wake him and get him ready for preschool. This morning, I woke Amal (my daughter) first, as my husband said he would drop Lil D off.

After she left, I woke up Lil D and helped him get ready – go to the bathroom, wash his hands and face, clean his teeth, change his clothes (all done with my assistance and gesture prompting to him). We headed downstairs, and I began preparing his breakfast.

That’s when I had my comedic autism moment. See the picture to the right? All those different types of forks and spoons? That’s Lil D’s All Time Favorite persevative habit – he loves to twirl beads on the stems of forks and spoons (and toothbrushes, hairbrushes and pencils/pens). He’ll spend the better part of the day taking one fork, then abandoning it for a spoon, then putting that in a drawer and taking a wooden spoon, then putting that down and grabbing a pencil, then going in the bathroom and trying to grab one of our toothbrushes (it’s why toothbrushes are usually hidden in this house) – all for the twirling of his beads.

I have mismatched forks and spoons (as well as strands of metal beads) littered throughout my house, in all my drawers, everywhere. When we have a people over, or try to set a nice table, one of my husband’s pet peeves is that we never have a full set of cutlery, and what we have is mismatched. We go through boxes of plastic cutlery, because we can never find enough metal forks and spoons to use.

So, to all my friends whom we have ever visited (with Lil D in tow), here in town or out of town, to the few restaurants we have eaten at with him (and there are a precious few), if you are missing a fork or spoon, chances are I have it. Come and claim it. In fact, be happy – the fact that Lil D went through your drawers means he was comfortable in your house. And, if you find beads in your house, consider it a sign:

“Lil D was here.”

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Walking Away from Autism

May 15, 2012 By Dilshad Ali 2 Comments

You can’t. Walk away from autism, that is, no more than you can walk away from any of your children. For that matter, if you have a child with any sort of disability or sickness (autism, downs syndrome, leukemia, cancer, what have you), the first thing that becomes painfully clear is that your child cannot walk away from what troubles him; therefore, you cannot walk away. Ever. No matter how much you want to at times. And we all do – even the most warrior of warrior mothers at some point loses her cool and wants to walk away.

But a mom cannot do that, and this can be incredibly difficult.

Oh sure, if we are lucky with a good support system, we get breaks from time to time. One of the most important things ever hammered into my thick skull was that it is imperative for me to take breaks – by myself, with my husband, with my other children. Give them time, give myself time, and take some breaks.

But here’s the one thing I’ve learned – I may be blessed with a great family and support system who helps me to and encourages me to take breaks, but I still can never walk away from my son and his autism. It is always on my mind, always with me, always a presence with me – when I go to sleep, when I wake, when he’s in school, when he’s out with his therapist, and most acutely, when he’s in his room hitting himself.

There’s not much we can do to stop him when it gets bad, but whereas the rest of family eventually walks away, I cannot. It’s not because I am anything special or an extraordinary mom. That’s just the nature of a mom — it’s what moms are – there, physically, mentally.

Heaven Lies Under the Feet of the Mother

After having a pretty decent day – a Mother’s Day prayer answered – Lil D took to his covers and built up to a big meltdown. I sat with him and used all the ammunition in my arsenal to try and bring him out of it – giving him maintenance tasks (complete the puzzle, “do this” imitation tasks), giving him a thasbi (prayer beads) to finger as I said prayers, and finally, holding his hands to block the blows. He finally quieted down, and I headed downstairs to check if the rest of the kids were eating their dinner.

Soon after, I heard the cries and familiar (and awful) thwack, thwack, thwack sounds again. I asked my husband to go up and help Lil D, so I could do the evening Maghreb prayers with the younger kids.

As I led my little ones in salat, we could hear the loud wailing and harsh slapping sounds above us. We finished the prayer and, and my four-year-old cuddled into my lap while my daughter leaned her head on me and curled up as we made du’a (supplication). It was hard for them to hear Lil D going at it. The rest of the house was too quiet.

We prayed for Lil D, for Hamza and Amal, for their dad, grandparents, and for me. And, we cuddled for a long time in silence afterwards. Afterwards, we walked into the family room to put the prayer mats away, and I saw my husband sitting on the couch. I asked him, “Why aren’t you upstairs?” He said Lil D had bit him, and so he came downstairs.

Now, not to insult my husband or make complaints about him – he is a great dad to our kids and helps out a lot, especially with the younger two. But, his way of handling Lil D’s meltdowns is different. It is upsetting to all of us to see Lil D engage in SiBs, and rather than lose his temper or God forbid, cause any injury to Lil D by holding his hands too hard (in an attempt to block the hitting), his dad sometimes chooses to walk away.

On one hand, I respect that. I know how hard it is, and I have lost my temper and yelled as well. But, on the other hand it frustrates me to no end. How can you walk away from a child who is hurting himself, even if there is little you can do about it? As his mom, I cannot let him be alone when he is that upset (unless my other children need me at the same time).

Is that a type of martyr complex? Is that me trying to prove I’m better than my husband? Not at all. He is wonderful. He does as much as he can. But that the end of the day, I just cannot walk away.

Perhaps that’s why, as the oft-quoted Muslim hadith goes – heaven lies under the feet of the mother.

(If this post seems too much like diss towards my husband, it’s not meant to be that at all. If it seems too much like I’m patting myself on the back, well it kind of meant to be just that – a pat on the back for Lil D, who endures it every day, and for me, who tries to endure it right alongside of him, and for all the mothers who are always there for their children. Sometimes you have to do the patting.)

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Giving Thanks for Good Autism Teachers

May 9, 2012 By Dilshad Ali 1 Comment

When I entered Lil D’s classroom to pick him up the other day, Sanjay* immediately turned around in his study carrel and called out to me: “Mrs. Ali, Mrs. Ali! If Lil D hits himself, will you be mad?”

“No, Sanjay, I won’t be mad.”

“Mrs. Ali, Mrs. Ali, if Lil D hits one of his friends, will you be mad?”

“No Sanjay, I won’t be mad. But I’ll tell him that it’s not nice to hit.”

“Mrs. Ali, Mrs. Ali, if Lil D hits one of the teachers, will you be mad?”

“No, Sanjay, I won’t be mad. I’ll be upset, and I’ll tell him it’s not nice to hit and that he shouldn’t do that.”

Satisfied with my answers, Sanjay turned around. I’ve been going to Lil D’s class a LOT lately – to help out when he has prolonged meltdowns and self-injurious behavior (SiBs), to check in, and to pick him up after school (since most late afternoons he is behaving “edgy” prior to ready for the bus ride home). The past several months, when I enter the classroom, Sanjay asks me the exact same series of questions, no matter what he is doing when I walk in.

I know Lil D’s past several months of meltdowns, SiBs, and crying spells have affected his classmates. Though Sanjay is the only one who consistently asks, I’m pretty sure the other students are concerned or bothered by it. Recently when I walked in, one student piped up, “Mrs. Ali, Lil D was pretty happy today!” I could tell it was a big deal.

They’re quite a band of brothers (and sisters), this group of kids. While I worry every day about sending Lil D out into the world, about the potential for verbal and physical abuse out there and his inability to tell me anything about his day, his thoughts, his feelings, his triumphs, his hurts, I know that we are one of the lucky families. We are in a school that places a high premium on inclusion of their special needs students with the “neurotypical” kids. We have a principal who is fairly open-minded. (Though we have butted heads in the past, when things really took a turn for the worse for Lil D, she clearly advocated for his best interests.) And, we have an autism teacher and aides who regularly communicate with us and welcomes us to visit the classroom.

There are a lot of stories out there about authority figures who abuse special needs children. I highlighted several stories last week in my post on trust and the autistic child. Several friends of mine with autistic children have shared their personal stories of problems with their kids’ teachers and administrators: withholding of information, general neglect of their child’s special needs and outright lies about what goes on in the classroom. I personally know parents who have been stonewalled by their teachers, barred from visiting the classroom due to arbitrary (and misquoted) school county rules.

It’s enough to make any parent of a special needs child constantly suspicious and distrustful. When your child can’t speak for himself – literally or figuratively — then how do you really know they are being properly taught and cared for? After I published that post last week, some moms told me they never trust the authority figures or the world at large – that trust doesn’t exist. Others told me that the only thing I can do is put my trust in God — that He will watch out for my child. I try to trust God. But, it doesn’t bring me the comfort I seek. Perhaps my faith is weak. Well, I know my faith is weak.

But, what I do know is that we are lucky. There are good teachers, aides, and therapists out there who are going to the bat for our children.  I have had such teachers and therapists for Lil D, and we are in a school where, for the most part, they are trying their best with my son. (I say for the most part, because my standards of care and education for Lil D are extremely high – what mother wouldn’t have the highest demands upon those who are teaching and caring for their children?)

His teacher and I have been on constant daily communication with each other via notes, emails, and phone calls over the past several months, with the escalation of problems and behaviors. We have met several times to come up with behavior plans, adjust his IEP (individualized education plan), and generally puzzle through the tornado of behaviors and emotions Lil D is enduring. We talk with his school-appointed occupational therapist to figure out how to address his sensory needs, we share notes on how the function of his behaviors change and what is working that week, and she calls me daily in the afternoon to discuss if he should ride the bus home.

What teacher does that? All teachers should be that dedicated to their students.  It should be the norm, not the exception. This, on top of the seven other autistic students she and her classroom of aides teach and attend to. I know this current situation with Lil D hasn’t been easy on anyone. Sanjay’s comments to me when I come to the class are a testament to that.

Lil D is graduating from elementary school in five weeks. We move on to the next chapter in his schooling, and it scares the crap out of me. We’ve spent five years developing a relationship with his teachers and administrators, with the kids who do “lunch bunch” with Lil D, with the entire school community. We have had our difficulties over the years, and we have been at odds, and I have shed tears and expressed frustration. But, we are one of the lucky ones.

It’s Teacher Appreciation Week here. And, while trust continues to be a problem for me, I certainly have appreciation. This week, I choose to remember the positive and give thanks.

*Name has been changed to protect the privacy of the child.

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