Autism’s Dr. Jekyll and Mr. Hyde

Dr. Jekyll graced me with his presence yesterday.

It had been a really, really long time.

Mr. Hyde took a backseat and allowed Dr. Jekyll to regain control for the better part of the day. I realized that I spent much of the day holding my breath, waiting for Hyde to rear his ugly head and regain control of my son. So after we got home from school, I let my breath go and made plans for the afternoon, thinking, what could it hurt? Let’s try something. Let’s try something we used to be able to do. If it works, great. If it doesn’t, oh well.

We went to the YMCA to go swimming — all three kids, Lil D’s therapist, and me. Lil D didn’t make it into the pool. Mr. Hyde came back. But it’s ok. Because, with the help of Lil D’s therapist and my husband, who happened to get done with work and meet me at the Y, we were able to keep our promise to our other two kids and take them swimming while our therapist handled Lil D’s meltdown.

That’s a victory too — when autism doesn’t stop you from fulfilling your promises, no matter how small, to your loved ones.

Questionable Faith

The tough times I’ve written about in previous posts continue in our house. The meltdowns, self-injurious behaviors, constant pacing and need to escape his house and classroom continue for Lil D. While we’ve been trying to figure out why he’s having such problems, while we’ve been obsessed with doctor’s appointments, new doctors, school meetings (What is the function of his behavior? Nothing. I got nothing.), brainstorming with his therapists, researching meds, adjusting dosages, our family has learned that old adage familiar to people the world over – a body can get used to anything, bad and good.

Two nights ago, after we had put the kids to bed, my husband and I sat with his parents, who have recently arrived from India to stay with us. I’ve been watching them this past week as they watch us deal with this tough time. We had kept quiet for a long time, saying in our nearly daily phone conversations with them before they came here, that for the most part, yes, the kids are fine, Lil D’s ok, he has ups and downs but he’s ok. But a few weeks before they came, we told them the extent of what has been happening here, and how it been affecting him, us, and his siblings.

So, they knew what they were coming into. But to hear that your beloved grandson is going through an especially bad time, and to see him in that bad state is a whole other thing. Witnessing their feeling of helplessness at the situation was, in a way, going through the pain all over again. So, we sat with them two nights ago, and my mother in law said she just didn’t know what to say to us, what advice to give us, how to comfort us.

All she could humbly say was that we had to put our faith in God. That nothing, nothing could happen unless He willed it to happen. That we must pray, and insha’Allah, He would answer our prayers. He would help Lil D. He would bring Lil D out of this terrible place he’s in. And, she said she had never met two people with such strong iman (faith) as her son and me.

I took her words to bed that night and thought about my age-old problem of having full trust in Allah, of really believing that He would help Lil D. How did my mom-in-law think I was a person of strong faith? Me? A person who struggles with each daily salat (prayer), who spends so much time trying to have trust and faith in His will, but fails miserably all too often? I think she must be mistaken.

The Jekyll to Your Hyde

The next morning I woke and thought about the proportion of time I had spent over the past few months in researching possible medical and environmental explanations for Lil D’s uptick in behaviors, talking with his pediatrician, making appointments with new specialists, consulting with other autism moms and having daily conversations with his teacher and team at school, versus the time I had spent — real quality time — asking Allah for his help. It was pretty disproportional.

That day was the day when Dr. Jekyll made an appearance. It was the first day in months that I didn’t receive a call from school asking me to pick Lil D up or to inform me about an hours-long meltdown he was having. It was the day that we went grocery shopping together, just him and me. His months of CBIs (community-based instruction) — where he had been learning, among other tasks, how to grocery shop – became evident, as he helped put tomatoes and cucumbers in bags and loaded stuff from our cart onto the conveyer belt.

We came home, and Lil D’s siblings were home from school too, and instead of having a meltdown, Lil D took his beads and twirled them and went to lie next to his grandmother, who was resting on the couch. This was Dr. Jekyll. This was, as his teacher happily exclaimed to me earlier, old Lil D making an appearance. I texted my husband a happy face, and asked Lil D’s therapist to bring her swimsuit, and sent a prayer of thanks to Allah.

My husband asked me if I wasn’t pushing things too much in my plans to take the kids to the YMCA for swimming. But I figured, why not? God helps those who help themselves. And for that day, I was done being paralyzed. We were going to try this outing.

As you already know, it didn’t work. Mr. Hyde came back with a vengeance, and Lil D’s therapist took him away and spent the next hour helping him through his meltdowns, blocking the worst of his behaviors so he wouldn’t hurt himself. My husband came and took our other two kids swimming, and I returned home to get dinner out on time for Lil D and make sure his evening routine went smoothly.

That’s the Jekyll and Hyde of autism. You can do as much as you can to maintain the routine, to push when pushing is needed and warranted and to pull back when things are too much. But, sometimes without antecedent, precedent, reason, or warning, Mr. Hyde will come. He comes and hijacks my son, and Mr. Hyde comes and tries to hijack my faith. But whereas Lil D does not always have the strength to overcome Mr. Hyde, I do.

With our arsenal of treatments, doctors, medicines, procedures, education and my imperfect faith, I’ll be the Dr. Jekyll to autism’s Mr. Hyde.

About Dilshad Ali
  • Zenabshah

    Disabled Muslims Network is a Support Network For Muslims Of All Ages With A Disability Or Illness And For Muslim Parents With Disabled Children & For Their Family & Friends. Living Worldwide.

    http://www.facebook.com/disabledmuslimsnetwork 

  • Anonymous

    What to do with Mr Hyde:

    Teach him to pray.

    No, really.  I know I’m a Catholic and a bit unfamiliar with your religion, but I’m a high functioning autistic who has had to deal with meltdowns all of his life.

    Set up a quiet room in your house, even if all you can afford is a closet.  Give him a prayer rug or a kneeler or whatever fits your family traditions.  Maybe two so he won’t be scared the first few times if you can be with him.  Then, when you here the perservating, when you can tell a meltdown is about to happen- that’s the time to pray.  The routine of the prayers is calming.

    In keeping with my traditions- I keep a rosary in my pocket.  When stress builds and I know I’m about to have a meltdown- I seek a solitary place, even if it’s a stairwell or a bathroom stall- and I pray.  A decade or two later, and Mr Hyde is gone.

    I may not be able to meet you on theology- but when it comes to tradition, routine, and self-control, Islam is equal to or better than Christianity on all three.  And it’s those three things, that the Autistic needs to survive in the modern world.

    • Dali

      Dear TheodoreSeeber.
      This comment of yours has affected me so much. If you’ve continued reading this blog, you see that it has inspired me to try things at home with my son, and to write more about this. Thank you very much.

      • Anonymous

        Thanks for replying- without it I may never have come back to see this- to see the wonderful other articles you have written.  I’m currently in a bit of a struggle myself- in addition to the high functioning autism, I was recently diagnosed with sleep apnea, since the time change I haven’t been able to get back into my comforting routines, in fact, I’ve barely been able to stay awake.  

        You have given me back what I need to do- I need to recover my routines.  All of them.  THANK YOU!
        Praise be to God for all he has done in your life and your family.  And don’t give up- I think this really will be a turning point for your son.

  • Nancy French

    I cannot imagine what it’s like — thanks for the window.

  • http://www.wound-wisdom.tk/ Donald Chalmers

    Dear Dilshad

    I have just returned from holding my newborn 4th grandchild in my arms, so do know a bit about parenting, but not much about autism. One thing I also did was to hold my own son in my arms, commenting that he had grown quite a bit since he’d first arrived in the same way as his son.

    Love is the key; love is the answer – if any is to be found. I have no doubt though that if your Lil D finds what it is that he’d love to do, then he will do that, and make you proud. In the meantime, peaceful routines will be important, and the giving of personal space, to allow him to grow into the person he wishes to “be”.

    Prayer is both the least, and the most we can do. We must let go, and let God. Music also is a great pacifier. You should let him hear all types of music, and see what interests him. He may love the sound of silence.

    If the sounds of Christian Chant, or of Synagogue or Temple quiet him, give thanks ! Prayers of joy and thanksgiving are the greatest, and the humblest there are. They are universal in their application, and appreciation.

    You yourself write beautifully, and it may be that your son will inherit your gift, or have great powers of intuition not given to us lesser mortals, whether we are Hindu, Buddhist, Jew, Christian or Muslim etc.

    Wisdom (understanding) is praised in Proverbs and Ecclesiates, and goes further than religious tradition, custom, or morality. It deals also with common-sense, and good manners, and does not shrink from doing what is right.

    Trust your own judgement when it comes to this; if you have done your own homework and live kindly yourself, there can be no one to blame, or point the finger.

    My own search for Wisdom, and indeed, God, commenced over 12 years ago, not long before the “Twin Tower” outrage (11th September 2001), and I made my start in King Solomon’s Wisdom, which is praised as “better than jewels, better than the finest gold, better than the purest silver”… and went on from there to create a word, character and symbol “picture-puzzle” as a “gift of love” to a troubled youth about to turn 21, hoping to encapsulate all that I had learned from my life’s living, and loving.

    Though my work does not yet deal with autism, I hope that my “Gift of Love” (my “Peace and Harmony” picture-puzzle (which may be viewed at http://www.wound-wisdom.tk ), may be for you a “well-spring” to inspire you as you “fight the good fight” – with and for, your son. Further links and insights can be found from my blog ” http://wound-wisdom-poetry.blogspot.com “.

    With all of my best wishes, I am

    Donald Chalmers, aka “piper02″ and “a piper too” etc, from the “Land of Aus”, downunder.

    • Dali

      Thank you for your kind comments asnd suggestions.

  • http://www.wound-wisdom.tk/ Donald Chalmers

    PS ! How could I have forgotten to comment on your artwork/photograph by O. Palsson ? It is terrific, and rather reminds me of a painting (well, a rather ancient copy of the painting) by Harry Winkler called “Casa Blanka”, for its beautiful, vibrant colour.


CLOSE | X

HIDE | X