“The snare has been broken, and we have escaped”: The Experience of a Mother of An Autistic Child 

April 1, 2023
Engy Eshak

Ten years ago, my son was diagnosed with autism. Since then, we have walked through hell and heaven, experienced anxiety, fear, disappointment, uncertainty, and also miraculous breakthroughs. 

Like other parents of autistic children, communication has been our major challenge, especially during the early years of diagnosis. Sometimes, when children can’t communicate their needs verbally, they may cry, hit their heads against a wall, kick, bite, scratch and hurt themselves and others. Frequent meltdowns could last for long time on daily basis, for years. Imagine how it feels when you are all the time trying to figure out what their problem is, or holding their heads and hands to prevent them from injuring themselves.

Many children lack the sense of danger. You have to be alert, otherwise consequences could be catastrophic. They constantly attempt to eat inedible food, chew mud, pencils, paper, leaves, scrumps, soap, …etc. Some children may try cutting electric wires, climbing windows, crossing streets suddenly regardless of their safety, and inserting small objects into their nose or ears. That is why they have to be under adults’ supervision 24/7 for years and may be for a lifetime. 

After a long and exhausting day, it could take up to 4 hours just to put them to bed. You may only get up to 6 hours of interrupted sleep, as many children have sleeping disorder. So if you came across a parent of an autistic child with tired-looking face, dark circles under the eyes and swollen eyelids, this means more than they are sleep-deprived. It means they are physically and mentally exhausted. 

Of course, dealing with this won’t be an acceptable excuse for not doing the work you have to do. On the other side of the river, there are deadlines, supervisors, coworkers, students and tireless critics who have no idea about what you are going through. In the whale’s belly, you keep trying to be as productive as you can, while keeping in mind that your priority is and will always be the welfare of your child. 

As the years pass by, your plans are gradually altered, and adjusted. But your unchangeable plan remains, spending one more day with minimum unpleasant surprises. Hard, isn’t it? In difficult times, some people wait for Moses to show up with his magic wand and parts the Red Sea.  Moses could be a kind-hearted supportive relative, a friend, a neighbour or a talented professional. For me, Moses was my effortlessly cheerful, loving husband. He’s never worried about anything, always focused on finding solutions. His sense of humour and hilarious attitude brought light in disparately dark days. The way he used to calm our son down when he had meltdowns, the way he made him roar with laughter are more powerful than tens of impressive sermons and long speeches. 

Throughout the journey, God keeps sending good Samaritans who surround you with healing, care, mercy and priceless love. You may also stumble on miserable comforters: those all-knowing kind of people whom you wish to disappear in difficult time. Many parents- specially from the Middle East – frequently share their experiences with armchair psychiatrists, and detectives. Parents are often blamed for things they did not choose at the first place. You would be blamed for not taking calls, not being in touch, or for missing friends’ life events. Every now and then, someone would underrate your efforts with your child or in life generally, saying, “so what? I know X and Y who have children with the same problem, but they fly every morning to Mars, afternoon they climb Everest and at night they fight aliens to save the planet.” 

Don’t be discouraged by negative talk. Never doubt your hard work. Autism is a broad spectrum. An autistic child could mean genius talented child. It could also mean non verbal severely disabled child who does not know the difference between day and night. Being autistic could mean this and could mean that and everything in between. In other words, differences among autistic children have nothing to do with failure. 

Sometimes, you may feel a bit like ‘this is out of my depth’. Cheer up! You will be fine. I now remember how I was told that my son would not walk independently, but he did. It was thought that he would use nappies for a lifetime, but he didn’t. In reports, his condition was described as showing limited understanding, but he is now showing surprising results. Some believed he can only develop minimum level of skills, now he is an amazing swimmer and chef. 

At this stage of the journey, we realised it is ok to feel weak from time to time. It is human. Accept your vulnerability, but develop a formula to bring strength out of it. Sometimes all you need is to sit back, wear crocodile skin, stop correcting people and break your addiction of seeking their approval. Make the most out of life, enjoy the company of considerate, humble and truly loving friends who keep telling you “you are a good mum/ dad”, “what you are doing is enough”, “everything is going to be ok”, “don’t worry you don’t have to explain”. No blame, no doubts, no judgment, no guessing, no pressure just hope messages. 

I don’t imagine what we would do without the help and encouragement of our family and friends. Words are not enough to thank them all. They always said in many ways “you will be fine”. We are now fine thanks to them.  

Finally, never give up on your child. Always remember that God is working behind the scene. He still parts the Red Sea everyday.

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One comment

  1. Thank you so much for sharing your story, your truth. This is invaluable to both the families raising autistic children and the educators working with them.


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