Autism and the Fractured Family – Making A Choice

This is part one of two posts on making tough choices, the blessing of having a supportive family, and the fractured family syndrome.

When I was pregnant with Hamza, my now nearly five-year-old, I had a recurring nightmare that grew more frequent and harrowing during my third trimester. The nightmares would place me in various disastrous situations alone with Lil D, Amal, and my future baby. I and the children would be trying to escape whatever was happening (sometimes we were stuck in a drowning car, once we were in a building with rising flood waters).

As I struggled to save myself and my three children, it always came down to this harrowing Sophie’s Choice – I could save two children, and one had to be left behind to doom. Who do I save? My “neurotypical” children? My autistic son? Who had a better shot at a good future? How was I to make that decision? The nightmare always ended thus: I would have my daughter on my back, the baby in my arms, and I would be calling to Lil D, trying to pull him by his arm to follow me.  I would be close to letting one child go – I never knew which one – and then I would wake up.

That nightmare haunts me still, especially lately as we continue to seek medical help, do research, beseech God, and try and figure out what we can do to end the meltdowns and alarming self-injurious behavior (SiBs) that continue to plague my darling boy.

Breaking, not Bending

The daily pressure of doctor’s visits and calls, deliberating new medicines, analyzing the function of his behaviors, working with his teachers and therapists at school and home, praying for guidance, and trying to figure out what will help is itself draining for me, my husband, our family, and especially Lil D.

Add to that the act of daily living with two other vibrant, energetic kids. Amal (our eight-year old daughter) is at the end of her third-grade year, and by God, that girl is amazing – she has done well in school, played soccer this spring, took swimming lessons, attended our local Islamic Sunday school, and took on a fundraising project for our local Central Virginia chapter of the Autism Society – raising nearly $3,900 for the ASCVA by writing a touching tribute to her brother.

Hamza keeps us busy too – with preschool, playing in his first season of soccer, play dates with his best buddy, swimming lessons, and the general goings on of an energetic boy. Husband is working hard, as am I, and though we are managing to keep everything going as best we can (with support from his parents), I am constantly at the breaking point, and our marriage is stretched.

We have endured rough patches in the past, patches that have bent us this way and that. But this is something different, something for which bending is not enough. All this leads me to what happened this Memorial Day weekend.

A Family Comes Together

To give you a little background – a year ago we found out that the daughter of my cousin in Toronto got engaged, and that the wedding would be on Memorial Day weekend of 2012. The mother of the bride is also particularly close to my husband and his family, as they had lived as neighbors in Abu Dhabi soon after she was married. So, this marriage was as big deal to both sides of our family. My mother-in-law asked us to try and figure out a way for all of us to attend the wedding, with Lil D.

We’ve gone to weddings in Chicago and Toronto in the past with Lil D, and it has been a herculean feat. But, my husband and I (at the time) felt it was important to attend as a family and for Lil D to be exposed to a quintessential part of our lives – the big Indian family wedding. After experiencing (or rather enduring) three weddings with Lil D, we have now come to the conclusion that it is more stressful than beneficial for him (and us) to attend these functions.

Families with autistic children face these decisions all the time. Do you take the child to a wedding? A family function? A vacation that removes them from the familiar or their routine? Heck, forget the big trips and events. Do you take the child to their sibling’s school play? To church, synagogue, or the mosque for services? To that birthday party that the whole family was invited to? When is it important for the family to do something together, for that autistic child to be pushed out of his comfort zone (because life is messy, life cannot always be routine), and when is it not worth it?

Fractured Family Syndrome is something families with special needs children are very familiar with. And it sucks. We have left Lil D behind with babysitters, or my husband or I have stayed home with him more times than I can count. We have done things as a whole family as well.

Nevertheless, we made plans for this latest Toronto wedding, thinking to take Lil D with us but hire a babysitter and keep him on his routine and not bring him to any functions (which in Indian weddings, are loud, boisterous, colorful, ceremonious, and always run into the wee hours of the night). But, when things took a turn for the worse with Lil D several months back, my husband and I quickly made an executive decision – Lil D would not go. But, would the rest of us go?

My family and my husband’s family conferred back and forth and made a decision for us. They felt it was extremely important for us to go – to get away, to take our other two kids and meet our friends and family in a city far, far away, to take a break (although, as I wrote in an earlier post, there’s no walking away from autism).

My brother, his wife and daughter in Texas made plans to come to our home in Virginia to stay with Lil D. My mom then also decided that she needed to be here as well, because she has stayed with him in the past and knows his routine. My other brother, who lives in Maryland, decided he would come with his family to spend a day or two as well with Lil D, with whom he is close.

Yes, five adults made plans to converge and care for Lil D. That’s what it takes to get us to go away these days. And, I know we are incredibly blessed to have this support, to have family who are willing to come so far for the love of their nephew/grandchild, just so we could attend a wedding.

Making a Choice

With all this in place, still my heart wasn’t at ease. How could I leave Lil D during this acute time? Though I knew my brothers and mom could manage him, I agonized over leaving. If you have a child who becomes sick, if you have a child who is in a crisis mode, then how do you leave, no matter how badly you are under stress?

I understand the need for breaks (and thank God we can get them), and I call upon my family to help us out when we want to go somewhere – but that has always been during times when Lil D is in a relatively good place. How could I leave him now, when he is in such a bad stage? But, as my husband and family pointed out to me – the SiBs and meltdowns would continue whether or not I was there. And the other children, as well as ourselves, needed to get away.

But here’s the thing – Lil D cannot get away. He cannot escape. How could I, as his mother, then leave? It’s a fundamental, innate, ingrained, entrenched maternal feeling that mothers have – if your child is hurting, then you should hurt with him, you should not leave him. Maybe that’s a martyr syndrome, but that’s how I feel.

Last Thursday, we were set to leave in the afternoon by car for Toronto. My mom had already arrived the night before, and my brother and his family were due in from Texas that afternoon. I had written a dossier on Lil D for the family, and I had spoken at length with my eldest brother about what was happening (he would be seeing it for the first time), and various ways to manage Lil D’s meltdowns. I had warned him to keep our mom out of the way when a meltdown was happening, as Lil D (when blocked from hurting himself) can lash out and hurt people around him.

When I had dropped Lil D off to school that morning, it had already been a rough start to the day, with crying, screams, and SiBs. I still hadn’t finished packing, and soon enough, I received a call from his teacher saying he was having a bad meltdown and was exhibiting new and alarming SiBs. His dad went to pick him up. I dissolved into tears.

When Lil D came home, the meltdown was done, and he was relatively ok. That is how it happens – Jekyll and Hyde.  We sat down to discuss what to do. “I can’t go,” I told my husband. “I just can’t leave him. How can I leave him?” My husband patiently assured me that the entire family was convening just for Lil D, just so we could get away. “But what are we going for? A wedding? How can that be worth all this?” He told me to think beyond the wedding, to think about how we needed to get away; to be social with other people again, to take advantage of the sacrifices everyone was making for us, to think of our other children, to trust our family.

I told him to make the decision — I could not choose one child over the other. That this was, in a way, my old pregnancy nightmare come to life. (Maybe I’m being dramatic, but there it is.) He said, let’s go.

And so we went.

Part two will touch upon the mixed blessings of Lil D’s uncles and aunts seeing him in this difficult stage and on overcoming our own social impairments.

About Dilshad Ali
  • Tara

    Crying, crying, crying.  The fierce love you exhibit – and write about – always moves me.  God, please lift up this woman in your tender embrace.

    I don’t know if this helps, but in the book of Matthew in the Christian Bible, it says that God is like a mother hen who longs to gather its chicks under her wings.  I don’t know if this idea goes against any Muslim teachings, but I love the image of God as a mother hen to compliment all of the images of him as a Father.  When I can not be with my children, I feel better knowing that God’s mother hen wings are gathering them up and protecting them.

    • Amina9577

      The idea of God as loving as a mother totally goes with Islamic viewpoint. In fact Islam says that Allah(God) has the love of 70 mothers put together. He definitely will look after his creation.

  • Cathy

    I know that pregnancy dream, I’ve had that, too.  You bring tears to my eyes & I’m sending thoughts & prayers to you & your family.  I wish my Alex could experience all the things his little sister can, but right now he needs more than I can give alone. 
    Whatever you decide to do– stay or go– please remember to take care of yourself in the process.  Your son will be okay, and he will know you love him always, whether he can be with you for this occasion or not.  Thank you for sharing your story, I’m grateful!

  • Susan Anderson

    I’ve been in this situation, with six children. It’s wrenching, or wretching, whichever term you prefer. But everyone needs to benefit from a difficult situation, whether it’s needing a break or needing to help the ones who need the break. I also think that as Moms and Dads, our neurotypical children need us as much as our not-so-typical children. In the same vein, our not-so-typical children need to learn how to lean on others besides us.
    My dream is similar in that I’m surrounded by starving orphans while I’m facing a tsunami dressed in high heels, pearls, and skirt. My interpretation, “I’m incapable of facing the task at hand.” I guess God thinks I am capable. I love your writing. Thanks for sharing.

    • Dali

      You are sooooooooo right.

  • Amy Julia Becker

    Dilshad, this is a beautiful and heart-wrenching post. I so want God to intervene and bring him out of the SiB’s and into a place where who he is becomes more present to himself and to you, where leaving doesn’t feel like relinquishing but like honoring his need for routine while honoring your need for celebration and spontaneity. I hope it was a wonderful, blessed weekend for all involved. 

  • MrsBs Confessions

    As the parent of a now 15 year old with autism, this post touched me deeply. We’ve had to make similar choices and they are never easy. I’m looking forward to reading the rest of the post.

  • Tressie

    As Salaam Alaikum I have no idea if you are receptive to biomed, but when we struggled with SIB it was almost always related to a bacteria flare.  250 mg goldenseal twice per day for two weeks with 3 caps of culturelle before bed (at least 2 hours away from goldenseal) always helped us tremendously.

  • Adrienne @ Whole New Mom

    Thanks for sharing.  I completely understand.  Sharing on my fan page.

  • agkcrbs

    Your writing has such wonderful thoughtfulness and feeling, as usual.  Thank you.