Our journey through autism

Posts tagged ‘daycare’

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.

The Regression

Previous post mentioned possible early signs that we missed or ignored, here is when we stopped denying to our selves there was a problem, when we noticed regression and when we finally asked doctors for answers. This all started between 2 and half closer to 3 years of age.

Socially – Bilal has 5 cousins from his dad’s side that we used to see occasionally,  Y a boy was 12, MR a girl was 11, MS a boy was 7, and S a girl was just 5 weeks younger than Bilal. Bilal got really excited to see them, and especially loved MS, even though he was older they got along great. He totally ignored S as if she didnt exist, she was larger and taller than him and way more outspoken with a strong personality. Around 2.5 Bilal suddenly seemed afraid of them when they came over and he was unhappy with them being there in his space and playing with his toys, one visit he threw so many crying/screaming fits that I had no choice but to put him to bed early while they were still there. This is when my husband first starting suspecting something wasnt quite right with Bilal, but denial just said it was a phase and its because we dont get to see them enough that lead to his anti-social behavior.

Own world – I was finding it more and more difficult to relate or play with Bilal, the lack of speech was very frustrating for both of us, his only way of communication was to take our hand and lead us to what he wanted and point and go “eh eih”. He wanted to do things his own way which to me didnt make any sense and when I tried to show him he would get angry, I was also pregnant at the time and constantly exhausted so used that as my excuse for lack of trying harder.

Lack of stranger anxiety – No matter where we were and who was around us if I told Bilal not to do something (grab items from the shelves or play with the salt shaker, etc) he would run towards the first person he saw and hug them or throw his arms around their leg, and I mean anyone, store clerks, waiters, friends or acquaintances. It was very disturbing because he opened himself to the danger of kidnapping or molestation and I didn’t know how to make him understand that was inappropriate. Whenever I told him No I would quickly grab his arm and make sure he didn’t turn to anyone.

Pacing – I remember the first time Bilal paced, we were at my parents for the day and after having gotten ready to go with shoes on and all that my dad and hubby started another conversation at the door, Bilal got bored and started running along with humming from the front door of the apartment to the computer room inside. He was really engrossed in just going back and forth I found it odd but thought it was his way to deal with boredom. I didnt see it again for a couple of weeks and then it became a nightly habit, I noticed he paced when he was bored and didnt have anything else to do as it increased I became more and more alarmed but didnt know what to do about it and kinda ignored it and tried to distract him into doing something else.

Picky Eating – Bilal used to accept any kind of food, other than the chance of vomiting he had no trouble with me feeding him. He ate a well balanced diet, he didnt taste chocolate until the age of 2, hasnt yet tasted soda drinks, and I wasnt worried about it, he did eat better and more when we went to my mom’s house but overall no problems, at the age of three he started only wanting to eat white rice, plain toast and a list of other things, rejected a lot of what he previously ate, but I thought that was just a phase and he was testing me and it would soon pass. It hasnt, very limited diet.

Behavior – His behavior kept on getting more and more difficult to deal with, if I told him not to do something he would stand there and scream and scream at the top of his lungs for a few minutes and nothing I could say or do would stop him. I tried it all, time outs, naughty corner, 1, 2, 3, shouting, spanking, removing toys, he didnt care when something was taken from him, the spanking didnt affect him, it was very frustrating and several times I felt like I was at the end of my rope not knowing what to do. He tested me a lot, he would do something he knows is wrong and look at me to see my reaction, he continued to do it even while I was punishing him. His behavior was a bit better with his father or my mother but overall very difficult.

Potty Training – We started potty training at 2 and a half, I had downloaded the Elmo’s Potty Video and he loved it and fell in love with all things Elmo, I had him in nothing but underwear and lots of praise and M&M’s as rewards, within 5 days he was peepee trained and by the end of the month he was poopoo trained we rarely had accidents and everything seemed perfect. 9 months later a month before I’m due to give birth Bilal fell in love with computers, he would be so engrossed with whatever he was clicking at that he’d forget himself and wet himself, this happened a few times and then he started soiling himself as well, and nothing seemed to work, this was a very difficult time for me, this continued on for another month. Now we rarely ever have any accidents of any kind, in underwear all day and at night in a Pull-Up and since he started school its almost always dry in the morning.

Comparison – Like any parent you cant help but compare your kid to some other kid, and this is what I did when we would meet his cousin S, like I said S is just 5 weeks younger than Bilal so they should be very similar developmentally. S was speaking in full sentences, she made decisions, had a strong opinion about what she wanted, she fed herself with a spoon almost flawlessly, she could pedal her bike,  it looked like she was a couple years older than Bilal. It made me very worried but again denial got me through it. S was the youngest of 4, she had 4 older cousins (from her dad’s side) that practically lived with them and they lived in a very social environment and saw a lot of people on an almost daily basis. Bilal on the other hand was an only child that didnt get to see anyone almost at all and would catch up normally when provided the same opportunities as his cousin.

Daycare – When Bilal was 3 years old we were in the US at the time for his brother’s birth, I tried to get him checked out for speech delays but with no insurance and his father working abroad it was difficult to get anything done so we decided to put him into daycare that way he would interact with children his age and be forced to communicate. I placed him in a Bright Horizons branch close by and he quickly got the hang of things and was doing really well. I even attended with him at the beginning and got to see for myself how he reacted and such. He had several classmates who seemed quiet the whole day and barely spoke they were dual citizens and English was their second language so I felt Bilal fit in well with them, he didnt really play with them and on the playground he liked to do his own thing but he didn’t seem to have any problems. The week of Halloween they had a dress up parade and they would trick or treat from class to class with the teachers giving them candy or treats, they all lined up and got super excited to get the little gifts they would grab at them and run on to the next class wanting more, Bilal on the other hand would walk into the class and instead of taking the treat would go explore that classroom until a teacher would take him by the hand to the next class and again he would explore that other class, that day his father finally admitted to himself that Bilal wasn’t normal, wasnt like the other kids at all. I made up the excuse that he’s never seen Halloween before doesnt understand that it’s all about the costume and candy. He was in that daycare for 6 weeks and he had just about started using one word sentences when we went back to Saudi, there I searched for a daycare and found a really good one called Little Scholars we placed Bilal in that and he made slow progress.

Next post I’ll discuss starting speech therapy and hearing “autism” for the first time.

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