Our journey through autism

Posts tagged ‘Egypt’

Hearing the word “Autism”

After I gave birth in the US my husband needed to travel to our home country of Egypt for some paperwork, with my arms full with a new baby and excess stress with dealing with Bilal’s difficult behavior and potty accidents  my husband decided to take him with him for those 2 weeks. It was a relief I could concentrate on recuperating and getting the hang of things and dealing with a new-born and the sleepless nights and such.

In Egypt my husband took an appointment with one of the best speech pathologist in the country and after an initial interview and observation appointment he said that Bilal was normal and that it was our shortcomings as parents for his speech delay, we didn’t talk with him enough and that if we started talking with him and describing out loud his every move he’ll pick up on speech and start talking. He also mentioned not believing in autism and that it was something parents like to label their children with as an excuse for their lack of effort or attention. I don’t know much else about the visit as I wasnt there but I was relieved that the doctor thought him normal but really pissed off for him saying my son’s lack of speech till the age of 3 was my fault, he didn’t even meet me and I’ve tried it all, I tried reading him books, stories, crafts, repeating after him, I’ve done it all and none of it worked.

By the end of the month we had moved back to Saudi Arabia and settled down and started looking for a daycare for him to attend so that he could communicate and play with other children. I had read about a daycare called Little Scholars run by a Saudi women who had lived in the US most of her life and upon moving back to Riyadh and not finding any adequate childcare for her son started this preschool, the teachers were all Westerners, English speakers, her curriculum was very similar to the Bright Horizons methods and I was happy I found something good. Bilal’s teacher was a South African, bless her she was very dedicated to her job and gave Bilal a lot of one on one attention even though we didn’t tell them he had a developmental delay and she didn’t have any special education training but Bilal came home from school happy, humming something or another, he was excited to go in the morning, and his vocabulary was slowly improving with time.

We also started looking for speech therapy programs in Riyadh. The only hospital that had speech therapy was Sulaiman Al Habib Hospital a well-known respectable hospital in the country, when I called for an appointment they told me there was a Saudi, Jordanian or Lebanese, I chose the Lebanese therapist and set a date. We go in for our initial evaluation, she asked us his speech history, number of words, medical history, pregnancy details, observed him for a while and said that he did have a speech issue and we would start the next week for twice a week hour-long sessions. I attended these sessions with him sitting in a chair on the side observing her technique. They played with doll house sets, blocks, cars, play food, utensils, stacking cups, and flash cards, after the first session, the therapist said that she suspects he has autistic features with his constant fidgeting and limited eye contact it would explain his speech delay, she said that if he doesnt make any progress with her than she would refer us to a child psychologist. I remember my heart pacing after I heard that word “autism” didn’t want to believe it and was still playing the denial card in my head pretty strongly, she must be mistaken and I kept repeating all my excuses in my head over and over, only child, non social life, etc… When we got home told my husband about it and he said let’s get an appointment with the child psychologist right away and not wait and see, so we call for an appointment, with the doctor at Kingdom Hospital they had just opened his department and transferred him from Jeddah, we meet him and again the long list of questions regarding my pregnancy, early childhood, medical history etc all the while observing him as we spoke, we stayed there for almost 2 hours. This doctor said that yes he had mild autism or normal with autistic features, he said that the most important thing was that we should surround him with typical peers at least 3 times a week, even if we travel on vacation, he said that we should spend at least 3 hours a day with him with one on one play, trying to initiate communication, give and take, sharing and such like behavior. We told him we were doing speech therapy and he said he didn’t believe it would come to any good and we should explore other methods of communication, like sign language, flash cards or computer assisted speech, I told him that I know that autism’s first treatment was speech therapy and he said you can do it if you want but we shouldnt expect much results from it. He didn’t have other options to share as autism was still something so new in the Kingdom, that there weren’t any facilities in the country to address this issue and if there were they would only be accepting Saudi nationals and not foreigners like us.

I was devastated, autism, my son has autism, how? what are we gonna do? we need to leave the country and move to the US we need answers, therapies, some kind of treatment plan, I was overwhelmed, in shock, depressed I felt it all. I cried a lot and I turned to the Internet, trying to find answers, decided that no it can’t be autism it must be this lesser thing called Pervasive Developmental Disorder-Not Otherwise Specified(PDD-NOS) I made an account on the Autism Support Network (ASN) and spent the whole next day online reading article after article trying to figure out what to do, how to reverse this. The doctor telling us that we needed to spend 3 hours a day playing with him was very difficult as I didn’t know how to play with him, that I’ve tried that, that I was also busy with a newborn and sleep deprived and short-tempered, I needed someone else a professional to play with him and treat him, not me.

For the next 4 months he went to preschool everyday for 6 hours, we tried to keep a twice weekly appointment with speech therapy but that wasnt working, Sulaiman Al Habib was the only hospital in Riyadh that had a speech therapy program and they were overbooked they didn’t have set designated appointments it was a first call first serve system and I was always finding it difficult to get a spot, we ended up going once a week at most sometimes we even skipped a week. I doubt the therapy helped him much but it did give him an idea with what to expect when we went to the US and started our journey there.

His speech did improve over those 4 months, instead of “eh, eh” when he wanted something he would tell us to come, his pronunciation improved slightly, instead of calling juice “oooh” it was now “oooce” small things like that and I was partly relieved saying that these Arab doctors were all mistaken he had these symptoms because of his situation and not because he had autism, and that when we got to the US we would get better answers and better speech therapy and that everything will be alright.

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