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Written by: Tara El-Shennawy
I’ve always had a feeling something was off. My two-year-old boy was a perfectly functioning healthy little dynamite ball. It was my first child so I never had a reference to what is considered normal development. I always noticed hyperactivity and a delay in a language which I ignored as he was two years old at the time.
It all started when I enrolled my boy in a nursery and started noticing his extreme tantrums when I had to leave him. I thought he was attached to me and didn’t give it much attention. Four months later, the nursery teacher told me that my son had questionable behavior as random shouting, the inability to point at things, not following up with his classmates and not answering when someone called his name.
Autism was the last thing I would have ever thought of. She never said the word and I assumed she was referring to ADHD. Denial hit me hard. I couldn’t believe that a healthy family with no history whatsoever could cause this to a child. It was the worst time of my life. Not because of the possibility of finding out something was different, but because I was in denial. The mere thought of a disease hurt my chest. I couldn’t breathe. There were days where I would stop driving and cry for hours in my car. My biggest problem used to be having a bad day at work or gaining weight. This was not the kind of situation I could handle or expected.
A month later, I decided to get him checked. I started visiting therapists. I noticed their diagnosis was superficial and not comforting. They did, however, notice that his concentration and IQ were below average, but confirmed that he was neither on the autism spectrum or ADHD. I started talking to friends and I found out that there are so many parents out there with kids with learning and developmental difficulties.
One of the moms explained that most Egyptian kids nowadays go to the Learning Resource Center (LRC) in Maadi for a comprehensive diagnosis of the case. The reviews sounded promising, yet quite over-priced. It took over a month to get our results due to an extremely long waiting list and my worst nightmare turned into a reality: my son was on the autism spectrum.
At that time, my family was still in complete denial even after conducting a detailed test. They thought the nursery was overreacting and LRC just wanted to make money. I thought I’d meet my family halfway and give my son speech therapy sessions at home instead of spending our savings at LRC. The speech therapist was good but in Arabic, whereas my son couldn’t speak anything but separate English words. The progress was slow, so I started giving him speech, cognitive and occupational therapy sessions at LRC.
Surprisingly, after a couple of months, he started saying short sentences, the specialists even told me he’s a moderate case that can be mild with the right intervention. I thanked God that I took speedy action.
A year later, it was time for school assessments and my heart skipped a beat AGAIN. What will he do? He can’t even make proper eye contact! What if he refuses to answer? What if they notice his social difficulties? There are almost no proper schools that would accept your child if they know he has some autistic features, even if he is perfectly functioning. Everyone told me not to say anything because he will be rejected and they were RIGHT!
Even when my boy did well academically in interviews, they would say we can’t accommodate anyone with certain limitations. I would argue that he doesn’t need a shadow teacher but still, it never worked. Until that one lucky day, where he didn’t throw a fit in a school interview, did really well and got accepted (at a school which I’d rather not mention). A year later, the school commented on his sensory issues and I promised I’ll get him checked.
However, I had to take him to Afak Center and leave LRC which had major management and scheduling issues that affected my boy’s growth. As much as he progressed at LRC, the occupational therapy department was weak and he had major sensory issues.
My son blossomed at the new center due to their detailed program and sessions. He turned out to be extremely smart academically and his memory is impressive which really helps at school. He still has sensory struggles which we have to deal with daily. He used to never communicate, now three years later he won’t stop talking. We haven’t noticed any learning difficulties yet. He can’t make friends easily, they don’t understand most of what he is saying, but he is persistent. His speech is still not fluent, but we can’t complain because we are so proud of him.
The positive part of the story:
- Finding out that your child has autism doesn’t mean that his life ended. Don’t panic. Don’t cry.
- With the correct EARLY intervention and treatment, your child will overcome so many of his struggles.
- At times, you will feel hopeless. Don’t. Improvement takes time but you have to be consistent and fight for it.
- Trust your guts. If you feel something is off, don’t listen to people who want to comfort you.
- Never blame yourself or your husband even if either of you have a family history of autism.
- By the time he reaches school, he might have found a way to use his perks to his advantage as a strong visual memory or obsessions.
- Your child’s diagnosis will humble you and you’ll appreciate the small achievements like no other mother.
- Don’t be afraid to have another child.
Your child is perfect just the way he is. You will be surprised that accepting his diagnosis is harder than finding him the required help. And always remember Don’t change your child, change his environment.
Further reading: 5 Places in Cairo to Aid Children With Learning Difficulties