Bursting My Daughter’s Belief Bubble

Being Muslim has certainly reduced the imaginary figures in our house – no Santa Claus, no Easter Bunny, and I never really pushed the Tooth Fairy either – not because I felt it was un-Islamic or anything, but my kids just didn’t seem into it. So, I’ve never had to really navigate that defining  moment when your child finds out that there is no Santa Claus. (Hope I’m not bursting anyone’s bubble here!)

Thus, I wasn’t prepared in the least for how I inadvertently and matter-of-factly smashed a belief last week that my daughter had long-cherished. In an instant, with my practical answer to her question, I burst a very big bubble. She has since moved on, relatively unscarred (I think).

I have not.

Here’s the scene: We are having breakfast – Amal (my eight-year-old daughter), Hamza (my four-year-old son), and I. Lil D had eaten just a little bit  before  and is upstairs jumping on his bed. Husband is at work.

Wait, let me preface the story with a little background. We’ve been going through several weeks, if not months, of increased behaviors, including an alarming uptick in self-injurious behaviors, with Lil D. For me, the general standby explanation – oh, its autism – has been not good enough to explain why things have gotten so bad. Bad, like we’re walking through a landmine, and we know things will blow, but don’t know when. Bad, like I’ve aged 10 years in the past two months. Bad, like I’m playing detective like mad, setting up appointments, pouring over data, assessing his diets and meds, consulting with his therapists and teachers to see what could be off.

Bad, like the rare times he makes eye contact with any one of us and smiles, his siblings will say, “Mamma, Bhai (brother) is smiling! He’s happy!” It’s a big deal if he smiles.

Husband and I are doing our darndest to keep things moving as best as possible. We play tag team and attend functions at Amal’s and Hamza’s schools solo, or we hire one of two trusted therapists/babysitters to stay with Lil D so we can take the other two out. We try and separate the kids on different floors of the house, so that Amal and Hamza don’t see Lil D when he’s in the midst of a meltdown. We use Nick Jr., “Tom & Jerry” and X-Box 360 Kinect as a babysitter to occupy the other two when we are with Lil D, trying to stop him from really hurting himself.

This has been life around here for the past two months. Suffice to say, the other kids, who are rock star sibs to Lil D (especially Amal – God bless that girl), are quite aware of what’s going on and are feeling it and handling it in ways that make my heart burst with love, gratitude, sadness, and helplessness.

So, back to breakfast.

As we eat our Cocoa Puffs and Special K, Amal says to me (for the millionth time), “I wish Bhai didn’t have autism. “

“Me too, Jaan (darling),” I say.

Then she casually asks me, “Mamma, when he grows up, who will take care of him? Will he get married? Where will he live?”

This is getting deep, I think. “Well, don’t you worry. He’ll always be with us. Baba and I will help take care of him, or we’ll find him a great home very close to ours where friends will help him, and we’ll go see him every day. I don’t know if he’ll get married. Allah knows best.”

Then she says, “But he’s not going to have autism when he grows up, right? It’ll be gone by then, right? He’ll be able to talk when he grows up, right?”

And, without thinking, I reply, “Well, jaan, he’s always going to have autism, and it’s not going to go away. I can’t say what’s going to exactly happens when he grows up, only Allah knows. But his autism is pretty severe, and he will have it grows up. And he probably won’t be able to talk, but again, Allah knows best.”

You should’ve seen her face. The sunshine was gone.

I had no idea, no IDEA that she seriously believed that when Lil D was an adult, he would be autism-free. This was not an idea her father or I had fostered. In fact, we rarely talk about what Lil D will be doing as an adult. And so, I was unprepared that with my answer to her question, I would be destroying a belief she had carried for a long time.

I’ve racked my brains over this. Had we ever encouraged her, or led her to believe that poof! Autism would be gone when Lil D grew up? I’ve definitely encouraged her — as I’ve taught her how to make salat (the daily prayers of a Muslim), as I’ve taught her surahs (verses from the Qur’an), as I’ve taught her how to make du’a (pray) – to pray that Lil D has peace, happiness, and learns to communicate.

I don’t know if I set her up in her belief. The fact of the matter is that kids sometimes just believe things, really believe things will happen a certain way. And it’s awful when their bubble is burst. I know she has moved on. Come on now, she’s only eight. She’s got school, girl drama, play dates, and a million other things on her mind. It was tough for her to hear what I said on that morning, but I know she’s not brooding over it – well, I’m pretty sure.

Part of me never wants her to give up on her beliefs for what she hopes and prays for herself, for her brother, for her family. I don’t want her to be like me – praying, but always struggling to buttress that prayer with belief. But another part of me wants her understand the reality of our life.

Sorry, honey. There just is no Santa Claus.

About Dilshad Ali
  • http://karenzach.com Karen Spears Zacharias

    I think that more than misleading her what this story reveals is her own cognitive development from the concrete to the abstract. This usually occurs, if I recall correctly, around the ages of 9 or 10. She’s no longer just thinking of the present. She’s thinking in terms of the future. And of something other than her own needs – she’s thinking of her brother’s needs — down the road. I’d say this whole exchange is a testament to all the things you are doing right. Some have gotten to adulthood without worrying about anyone but themselves. Your daughter sounds like a very caring child. Surely, she’s mirroring her mama in that. 

  • Chinyere

    As salaam alaikum,

    I was linked to your page after reading your interview with Nura for “Love, InshAllah,” and I saw that your tagline mentioned autism, so I decided to explore. I’ve never met another Muslim family with a child with autism before! My brother is turning 25 this year, and has autism.

    I think your daughter will be okay. As a big sister of a young adult with autism, I know I still dream bigger than my parents do, even though my brother has come so far from the days when his first word was Pluto (as in, the dog from Disney), that he wrote as opposed to speaking. My parents still talk down my optimism. Your daughter may not stop believing that one day, things will be better…maybe not that he’s cured, but better for him as an adult.

    I think it’s fine that you let your daughter know that autism is not something that will go away. I think I understood that around her age, if my parents didn’t tell me. It shouldn’t scar her for life any more than having a brother with special needs will…and I don’t think it does, at least from personal experience.

    Anyway, I could say a lot…but it sounds like you and your husband are doing an awesome job and that you have awesome kids who are making the road easier for you. :) Your family is in my du’as…

    ws, ~Chinyere

  • Nancy French

    Poor dolls — all of you.  I think you are doing a good job.  :(

  • Jane

    I know something of what your family goes through.  I have a daughter with both Down Syndrome and autism who has very little speech. She is 15 years old. She’s blessed to have 2 older brothers and 2  older sisters who adore her. I pray that the Lord will spare my life, so that I can be with her as long as possible. She is the joy of my life, and having her in our family is a little piece of heaven.
    I’m amazed at how well children see the big picture in difficult situations. Your daughter obviously loves her brother very much.  That is a credit to you and your husband. I wish the choicest blessings upon you and your family. 


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