Walking Away from Autism

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.)

About Dilshad Ali
  • http://www.facebook.com/doctorankenman Ralph Ankenman

    At severe levels, meltdowns may be Immature Adrenaline Systems Overreactivity (IASO).IASO is *not* a mental illness, nor is it a part of one. However, autism and other mental illnesses can make a child more susceptible or prone to Immature Adrenaline Systems Overreactivity. IASO can also occur in people with no diagnosis of mental illness.

    IASO includes two different adrenaline crisis states: the beta-adrenergic” rage reaction (evading danger), and the “alpha-adrenergic” rage reaction (fighting perceived threats.) These two states are naturally built into all humans, but can occur in unexpected situations for some people, such as autistics.

    IASO is a new diagnosis and treatment regimine published in 2012 by doctors in the Midwest USA. Being so new it is not yet covered by DSM, but clearly has been very successful in helping patients and families manage and eliminate such behaviors. The regimine is based on adrenaline acting medication (not psychiatric drugs) and often provides rapid results as well as the opportunity to eventually overcome these bahaviors and cease the treatment.

    Search for “Hope for the Violently Aggressive Child” for more information. There are live testimonials at the website and in the book.

  • Skdo68

    Deep love to you. You are an amazing woman and mother.

  • http://www.facebook.com/maranda.collinsmarvin Maranda Collins Marvin

    Hi Dilshad,
    Wow! I understand, fully understand your need to apologize, or “make right” on some of the things you said in your post, but there is absolutely no need to. Those of us that can attest to everything you are experiencing in this life, in regards to autism, appreciate your genuine experience. We appreciate your words of encouragement. We appreciate the realism of our day-to-day journey expressed through your words. Those parents that make a daily decision not to “walk away from autism” know, without any ill feelings, exactly what your feelings are conveying through your words. We feel the same way, and many times, we feel as if no one else feels the same way. It felt good to read your post. It felt uplifting to know that my decision not to “walk away from autism” is in a stellar bowl of love with all the other parents’ decisions not to “walk away from autism”.
    I pray you and your family continue to experience pure love and strengthening, after every jumped hurdle in LIFE.