How My Autistic Child Changed Me
“Perhaps you dislike something which is good for you” – Qur’an 2:216
We quote the above many times in our lives. But what if we had to relate it to our motherhood? A hard but beautiful journey for many, this is true. Yet when you face having a disability amongst your offspring, then hard gets another level of meaning. It is not only heart-breaking, but if your child’s disability is a mental one, it is mind breaking for you too. But let me tell you my story.
The word autism fell on me unpredictably and abruptly, and it buried me three feet under the ground for many dark and long months. It was after my toddler had begun to act more and more strange. I was mainly concerned about his night terrors, where he would wake up with a scream and carry on screaming until he fell asleep, exhausted, with no energy left, regardless of the whole household’s efforts to calm him down. Doing research, I came across an autism tick list. It shocked me when I realised my child ticked most of the boxes.
At that point, it didn’t hurt yet because I had only planted in my head that he might be autistic, not that he is. I mentioned it to my GP only to be told heart-breakingly, that even if he is, there is nothing we can do about it. Then I repeated my concerns to a midwife, who was visiting to check his progress,and she confirmed my worries, ‘I can’t suggest it to you since I am not a paediatrician, but since you have mentioned your concerns, yes I do feel the same. He has many typical autism behaviours.’
The first stage of depression then arrived for real. There was a constant battle between confronting close ones telling me that he will grow out of it, he is only little on one side, and crying for countless nights with my heart broken to thousands of pieces on the other. He was extremely difficult. I couldn’t handle him, calm him down or even stand him at times. It hurt, believe me it has hurt like nothing ever, before or after. He screamed day and night, made close to no progress in all areas, and was one big grumpy always-unhappy-about-everything- around- him child. I couldn’t play with him, go out, visit friends. I was isolated and broken inside. He carried on screaming. Everywhere and always.
I’ve tried everything. Diets, supplements, holistic approach, therapies, spent countless amount of money for little or no gains. Drained of work and no sleep during the nights, I steadily felt worse, day after day. I hated my life, my child and myself the most for failing with all of it. I dreamed of dying on daily basis, cried more than ate, and kept dying inside each time I thought of everyone else having fun times with their kids. I worked at school and loved the company of the children. I loved the activities, games, and the time with them. Not him. Spending time with him was like watching an alien- there was no engagement; I had no idea how to connect -regardless of all the autism-related books piling up on my shelf- I just didn’t like it, full stop.
This arrogant ‘why me?’ was soon replaced with looking for the blame within myself. Maybe I didn’t take enough supplements when I was pregnant. Maybe I have taken the wrong ones. Maybe I should have never agreed to vaccinations, maybe I should have had genetic tests done on both myself and his father before allowing the pregnancy. If only I could take back the time. But I couldn’t. And even if I could, it wouldn’t change a thing for us because I was soon to accept and fully understand that this was my Qadr, my own pack of tests than no one could take away from me, ease for me or change for me. No one but Him.
A long time later he received his official diagnosis, joined a special unit at nursery, and even finally began to sleep at nights, giving my own brain the time to recover from depression and the constant 24/7 stress. Things became easier: I have slowly began to enjoy some of the days spent together, stopped fearing weekends and panicking at the sight of school holidays. It wasn’t all perfect, as other people have it yet don’t see it, but more and more often, it was just calmer.
Now you must be wondering, where did this sudden change come from? Which of the supplements have helped? Which doctor has cured this little boy with a poisoned brain?
There were bits and bobs put together that obviously have helped. But none to a normal standard, healthy-development level. So what happened, where did the ease come from?
It came directly the day I realised that nothing will help me if Allaah doesn’t wish it so, and nothing can harm us if Allaah protects us. Seems so obvious on the surface, yet the deeper you dig the more fascinated you become with your own link to the Creator! I have stopped stuffing him with supplements waiting for a miracle; instead I have begun taking little miracles for us by learning how to ask for them. I begged from Allaah, at all times during the day and night, for only He could help me to be a better and more patient mother; only He could help with my son’s moods; only He when cried to, could take my pain away …regardless of those close ones comparing my child with their own and feeling they are all something better because my test was harder than theirs!
It doesn’t even hurt anymore, alhamdulillaah. Where before there were times when I would see a family of a mother and children chatting about the toys and sweets in a shop and break to pieces for the rest of the day, having compared them to the picture of me, fighting with my child to wait in the queue so that I can pay and leave the store. He would scream and kick, they would carry on with their normal lives. It used to kill me.
It doesn’t bother me anymore because I gained a link with my Lord that made me stronger; a link allowing me to be happy without depending for my happiness on other people, things or situations out of my control or out of my reach. I became happy with what I have. And if these hard moments overwhelm me every now and then, and I feel like I’ve had enough, I cry myself out on a prayer mat. Pain soon goes away and we carry on as normal.
Perhaps I disliked something which was good for me.
It taught me patience, it became the means of countless hours of ibadah which wouldn’t even cross my mind in a stable situation. It became the means of rewards for my akhirah.
“There is nothing that befalls a believer, not even a thorn that pricks him, but Allaah will record a hasanah (good deed) for him thereby, or erase from him a sin.” (Muslim).
What about day-to-day stressful days, nights? What then about every moment outside of the house, suffering isolation, so much of the sacrifice I have to make simply because my child wasn’t able to cope?
I have stopped at last blaming myself and feeling like the worst mother in the world. I have stopped hating myself, my situation, anyone or anything. I have accepted it and learned to look at positives within it, and believe me I found quite few!
I know it will be worth it on the other side. In between, I keep praying for ease and thanking Allaah for this situation- perhaps it might be the only way for me to reach Jannah.
La hawla wa la quwwata illa billah. There is no might or power except with Allaah.
This duaa recited on a daily basis changed my life because it changed me. It strengthened my faith as it showed me quick results. I could never recommend it enough.
Autism has change my life and – especially – changed me. I gained patience and tolerance towards my circumstances without losing my mind over it; I gained the ability to be happy with what I have and what I don’t, because I no longer look at other people’s blessings (and envy it without realising they too are tested, just in other ways). My child’s illness has hugely contributed to the Muslimah I am today – a stronger, more grateful and happier-with-my-destiny one.
About the author:
I am Silesian, ex-language support worker, mother, revert, blogger. They call me a migrant but I disagree: I belong nowhere, interested in a never ending journey. Because a home is where the heart is.
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