Our journey through autism

Archive for the ‘background information’ Category

Wandering

Wandering and getting lost is a fear any parent has, whether with autism or typically developing. The worst pains a parent can go through is to have their child missing not knowing whether they’re safe, dead or alive. May God protect our children from any harm.

Wandering is a common threat to autistic children. The children dont know that they’re doing it, they’re in their own little world and get easily distracted, they may follow something they find interesting unaware of their surroundings and where their family has gone. The child being non-verbal or with limited speech is at even more danger, unable to tell a trusting adult any useful information. Some parents will label their child’s clothing or acquire one of these. There are several stories in the news of children going missing or wandering off, and the ending of those stories have gone both ways.

Alhamdullah I dont have that problem with Bilal but it is still something I worry about and whenever we go out we keep a very close eye on him, reminding him constantly to stay close by and we’re thankful that he’s recently learned his full name and age, I know at this age he should know his address, phone number, parent’s names and phone numbers but we’re taking it one day at a time and making sure he’s always safe. I have 1 wandering story for Bilal that took place the day before his second birthday. This is copy and pasted from a journal I keep that I wrote soon after the event.

“We were in Saudi Arabia at the time and lived in an apartment building, you’d have to go up a flight of stairs to reach our apartment. So I was in the bathroom emptying the washing machine preparing to hang the clothes up to dry, hubby was outside at his desk working on some accounts. The doorbell rings incessantly and I can hear my 2 year old crying pretty badly, thinking that maybe the sound of the doorbell surprised him as it did me, we weren’t expecting anyone at all, he’s usually so excited when it rings, I let my hubby answer the door, a bit later he comes to me carrying our son saying the guy downstairs just brought him, he was out in the street. Oh my! I was shocked but my typical self doesnt react at the occurence of an event, usually afterward I might break down and cry, let it all out …. I could see that he was unhurt and all I said at the time was “the cat must have followed him outside too” so my hubby goes and finds the cat outside hiding under the stairs.

Later that day as I was preparing dinner I let it all out and cried some imagining all the stuff that could have happened but thankfully hadn’t… if he was really in the street like the guy that works in one of the shops downstairs says then he could have easily been hit by a car, he could have easily been taken by someone, and as he went out barefoot he could have stepped onto something sharp and hurt himself. I imagined myself talking to police telling them what he was wearing and showing them recent pictures. He also had a poopy diaper and was in a onsie, totally appears like neglectful parents, we arent, always have an eye on him but for some reason neither one of us heard the front door opening. I felt horrible, and kept thanking God that nothing happened and that he’s safe and sound. I think it was a wake up call to be more careful and thankful and not take anything for granted. After I changed him and washed his feet, hubby took him to the door and very sternly told him to not open it again and that it was a big NO NO. The whole event kinda scared him, even before we reprimanded him, he was crying and seemed shook up, he’s not really used to strangers, so i’m sure the guy that brought him up scared him as well.

The cat that I mentioned isn’t even ours, we were kitty sitting for a friend of hubby’s while he goes on vacation. So the cat could have been hurt or taken as well, also to make matters worse is that the cat is in heat and meowing so loudly for a tomcat that she could have been impregnated by a stray, but thankfully that didn’t happen either.

What I think happened was that my son was playing with the door and it opened and the cat ran out, or the cat being in heat was hanging around the front door maybe even reaching out for the handle, so Bilal may have opened the door for her, so he ran out to follow her, when the guy downstairs saw him, the cat ran and hid under the stairs. I don’t think he would go out barefoot and on his own down a flight of stairs and outside of the building like that. He knows that he needs to get dressed to go out and he wouldnt go so far alone, but you never know really. So we installed a chain to the door and keeping it shut at all times and praying that nothing like this ever happens again God willing.”

I don’t think I need to remind parents to look after their children and keep a close eye on them, especially if your child is on the spectrum they need even more attention.

 

Please read this for more information: http://www.sciencedaily.com/releases/2011/04/110420143702.htm

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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.

First couple of years

I mentioned Bilal’s early development as in health and reaching milestones. I will discuss other things of importance in this post.

What did I know about Autism before we ever suspected anything?

Like most parents with autism they will answer that the only thing they knew about autism is what they saw in the Dustin Hoffman, Tom Cruise movie “Rainman” in that movie Dustin Hoffman had autism and because he had harmed his little brother Tom Cruise by turning the hot water on him in the bath the parents had no choice but to place him in an institution, as an adult he seemed to be in his own world, didnt have any facial expressions, didnt like to be touched, didnt like to have his routine altered in any way and had the genius gift of arithmetic and counting, but didnt understand the concept of time or money value.  Other things I thought I knew about autism is that the child didnt show any affection, never smiled, hated to be touched and was difficult to deal with, I had seen the Oprah episode with Jenny Macarthy and followed lightly the whole MMR vacccination stories in the news.

I believed the MMR theory and had decided as I had a boy with higher chances of getting autism that I would postpone his MMR vaccine and have him take it at the age of 5 after the risk period of autism.

With all that I read I felt for some reason that it cant possibly happen to us, that my little boy was affectionate loved giving hugs and being carried, smiled, laughed and giggled, was well behaved and was a smart little boy, he cant possible ever have autism.

Early warning signs that we missed

Bilal was an easy baby, other than the reflux/vomiting there were no problems, he slept through the night (12 hours) at 8 months old and he ate whatever was offered to him, he learnt the meaning of “NO” at 7 months and didnt play with what he wasnt supposed to, I felt really lucky with his behavior when I saw how other children close to his age were acting like.

I read the “What to Expect” series from pregnancy until the early years, as most of you know the books are written in question/answer format and I liked the easy direct approach of the book and read it each month. So I remember one of the questions was about “toe-walking” a mother was concerned about her 2 year old walking on her toes, the author answered that it was normal for a lot of toddlers to walk like ballerinas and it was just a phase as they improve their balance and learn to walk properly. Bilal walked on his toes a lot but not too much to be a concern.

Bilal spoke his first couple words at 12 months, ota (cat), mama, baba, nanna, baby, and a whole bunch of animal sounds like moo, maa, meow, woof, tweet tweet, etc. That was it, nothing more and I knew he was a late speaker but again the “What to Expect” series stated it was normal for some children to be late speakers, and Bilal had every reason to be one, early walker late talker, an only child that didnt get to see other children his age much if at all, independent and stubborn, also having heard so many people say that children in Saudi Arabia usually spoke at 3 or 4 years of age, that so and so knows someone who didnt speak until the age of 4 and they were totally normal and nothing to worry about, Einstine didnt speak until he was 7 and stories like that.

I have a friend with a son 2 years older than Bilal and she would go on about all the crafts she worked on with her son and all the books they read, I couldnt get Bilal to do any of that stuff, he hated coloring, didnt enjoy Play-Doh, lost interest quickly and didnt sit long enough to complete anything. He wasnt interested in books at all, he wouldnt listen to the story and just wanted to flip the pages of the book. I thought that was just his personality more interested in running around and such and gave up trying.

Like I mentioned Bilal was well behaved and I didnt have any trouble with him, even when he became 2 I didnt feel like I was going through the “terrible twos” all that started changing at 2 and a half, thats when he became stubborn, threw tantrums when a toy didnt do what he wanted to, screaming and crying and throwing the toy across the room. I didnt know how to play with him, he wanted to do his own thing, and all that I imagined motherhood games were like just didnt work with Bilal. It was very frustrating, it felt wrong but I guessed it was due to him being a boy, going through a phase or because I was pregnant with his brother and just tired and not really in the mood.

Humming – When Bilal was less than a year old, he had this humming sing song chant that he would do over and over all the time, we thought it was cute how he always said it in the exact same way. As he got a bit older that chant stopped but he would hum while he ate his cheerios or Goldfish quite loudly  but again we thought it cute, and just part of his noisy nature. This probably is our earliest sign that we missed.

Going to the doctor with Bilal was always a problem, as soon as we walked in to get weighed or measured he would start screaming and stiffening his body, the doctors he went to all treated him kindly and patiently and I noticed other kids his age werent carrying on in the same way, it was just odd. That greatly improved when I got pregnant and he came with me to all my doctor appointments and he saw that I didnt cry or scream and it wasnt really anything to be afraid of. Of course he screams and stiffens with shots, and ear check-ups. Another thing I want to mention is since birth giving Bilal any type of medication or vitamin was impossible until this day at the age of 4 I have to add it to his juice or milk when he was younger, he would either vomit, spit it or totally reject any medication or vitamin any flavor or shape.

Sticking to routine – I didnt feel Bilal had a problem with change of routines, we ate out a lot, we stayed in hotels, lots of traveling and he would be fine, the most important thing is that his dad has to be with us and his lovey Ota. Whenver we traveled without his father his behavoir would be very difficult and a lot of tantrums and such. He sticks to a routine when it comes to his eating or drinking habits, certain cups, plates, brands and method of eating, very picky, a short list of accepted foods.  When we quit the bottle at the age of 2 he quit drinking milk, he wouldnt drink it in the cup no matter what we tried.

Head banging – Bilal went through a phase of head banging when he got upset especially when I denied him something he wanted, he would scream and bend down to the ground and start banging his head, I got really stern with him and would shout out “NO head banging” this lasted for only a week, and he would then bang his fist but that also phased out. Like I always I turned to my “What to Expect” book and said that head banging was a normal way for toddlers to express their frustration pre-talking and its a phase that will pass, as it did pass with us I didnt think twice about it.

Attachment to lovey – Bilal has a stuffed toy cat, I bought when I was still pregnant it was the same colors as the cat I had when I was a teenager and the beginning of my pregnancy I had so many kitten dreams thought getting the baby to come a toy cat would be cute. His first word was cat and by 12 months he fell in love with it and was obsessed with the toy, he hugged it in his sleep and held on to its tail in his sleep he would search for it, I was able to set the rule cat stays at home, we only took it with us if we were spending the night out. All that’s typical of most children the odd part was he would bang it against his cheek and hum, or rub it against his tummy or soles of his feet and as he got older he got more and more attached to it.

Nightmares – A lot of those evaluation forms you’ll fill out ask about his sleep habits and nightmares, I mentioned before that I had no trouble with Bilal’s sleep, he slept through the night in his bed in the dark with the door closed no problems. At the age of 2 we went through a month of nightmares, he would wake up between 2-3 am screaming and running to our bed, he would sleep the rest of the night in between us. This was every single night for a month and we had no idea why, my husband suspects he got scared from the Disney “Christmas Carol” movie, Uncle Scrooge was afraid of the Ghost of Christmas Past and he did go through a phase of fear of his shadow, we dont know for sure though. Around that time we decided it was time to get a new bed for him, he’s been climbing in and out of his crib for a few months now and with sleeping sideways a lot the crib was getting too small, as soon as he moved to the new big bed the nightmares stopped…

So these are what turned out to be early warning signs of autism that I missed and didnt know about. I had an excuse for all those behaviors and was in denial that it could be anything more serious, its all just a phase of growing up, terrible twos and it will pass.

I suggest that all parents educate themselves about autism and early warning signs even the minor ones, yes it might just be a phase and it passes or it might be autism and early intervention is the best treatment. Wipe out denial and trust your instincts, question doctors, get second or third opinions, read and research and educate yourself. You might not need this information for yourself but you could help another parent by showing them what you’ve learnt, we need to fight this disorder together, affected and non-affected families. So far as there is no cure the best treatment is early intervention, getting the required therapies earlier that’s when they make the biggest impact. Doctors say we’re lucky we started treatment at 3 years, but I wish we had started earlier as soon as the speech delay was obvious and not wait it out and see.

Early Development

As most mothers with children on the spectrum you don’t suspect anything wrong or off until 12 months or later. I was happy with what I thought was a healthy baby after everything that went wrong during the pregnancy. Bilal’s only health issues the first year of life were the following:

  • umbilical hernia: after his umbilical stub fell off his belly button looked odd sticking out as if still another part of the stub should fall off, the pediatrician later told us it was an umbilical hernia and we should just leave it alone and the intestinal wall will close off on its own. The pediatrician I saw in Egypt told me that I should use an umbilical bandage to push it in and help speed up the closing on the intestinal wall, and that what we did, by 6 months the hernia was gone, and he now has an “outie”
  • reflux: within the first week we noticed that burping Bilal was a problem, he seemed very uncomfortable after a meal, lots of straining and grunting, the burp came out after a long time and lots of spit up and projectile vomiting. It was quickly diagnosed as reflux, and we were told to give him small frequent meals and feed him upright and keep him upright for as long as possible (30+ minutes) after a meal. He couldn’t fall asleep on his back and he spit up so much that at 6 weeks old I decided to have him sleep on his tummy, I was well aware of the risks of SIDS but I had him sleeping on a blanket on the carpeted fall, and he slept so much better that way. We went through so many bibs, burp clothes and clothing with the frequent vomiting. We were told they grow out of it between 6 – 12 months but with Bilal it lasted 18 months, it was worse when he started solids and feeding him in public caused a lot of anxiety cause I was afraid he’d vomit which has happened twice on a plane, several times at the doctor’s office, twice in restaurants, and countless times at home and at my parents. It no longer felt like reflux, he could vomit when he felt like it, food too hot, too cold, odd texture, crying too much, fear, bad or unexpected taste. It was the worst part of his childhood so far.
  • Occasional colds and ear infections: the same rate as any typically developing child
  • Teething: with each new tooth Bilal developed a slight fever and diarrhea, and of course the irritability
  • vaccine side effects: he would get a fever and the site of the injection would be warm to the touch but I was told this was typical.

The great thinker

Fav pic for Bilal at 7 months

Development:

  • He could support his head by 6 weeks.
  • First smile – 5 weeks
  • Slept 7 hours at night the night he turned 3 months
  • Sat unsupported at 5 months
  • crawled the day he turned 7 months
  • walked towards the end of 9 months
  • first word at 12 months – ota which is a cat in Arabic
  • He could climb out of his crib at 18 months, climb back in at 20 months

2nd Birthday

So other than a lack of a proper development of speech, Bilal developed like any typical child. I was unconcerned about the speech delay for a while as he was an only child, we didn’t go out much, a boy, early walker late talker saying, independent and stubborn. That should have been my early warning sign and I should have seeked help instead of waiting. Really feeling something was odd between 2.5 – 3 years of age, and I will discuss that in a later post.

Introduction

Hello

Welcome to my blog. This blog is our story with autism, I’ll start from the very beginning, from pregnancy all the way to today, I’ll highlight the early warning signs that I missed, how we went about getting a diagnosis and the therapy and treatments we’re using. In doing so I hope it helps other families that feel something isn’t quiet right with their child and find some answers that may help them.

My name is Sarah, and I am an Egyptian, American, Muslim. I was born in North Carolina and lived my early childhood here in the US, my dad was studying for his PHD and my mom was a stay at home mother looking after me and my younger brother, you can say it was a pretty typical childhood. Once my dad completed his PHD we moved back to Egypt for 4 years, where he was teaching at a local university, my mom taught English as a second language at another university, my brother and I were adjusting to life and school and enjoying all the cousins and extended family that we hadn’t known till then. At this point my parents decided to move back to the US and try their luck so we moved to the little university town of Auburn, Alabama another 2 years here and my parents weren’t really successful and started applying for jobs abroad where my dad was hired at a technical college in Riyadh, Saudi Arabia. My parents thought they’d give it a chance, at least they’ll be able to complete an umrah and hajj (pilgrimage) to the Holy cities of Makkah and Madinah if nothing else. You can say the thought of moving to a  desert country where women are forced to cover up scared me and I had myself a huge drama show claiming my parents were ruining my childhood, little did I know that those years in Riyadh were to be the best years of my life and the friends I made during those years are the closest and truest friends I’ve ever had and we’re still friends today, 15 years later. I completed high school between Riyadh and Jeddah and applied for college in Egypt where I studied Business Administration and graduated in 2004. A year later I got engaged and worked as a Business teacher at my old high school in Riyadh for 2 years, got married and pregnant.

That’s my childhood and background, does any of that affect my chances or increases my risk for having a child on the spectrum, who knows, all the forms we fill out ask for the education level of the parents, so to some degree it might, but I doubt it, as we’ve seen autism strike children of parents of different backgrounds, education levels, and social status, but I shared it because it might be helpful to someone out there and it makes me more normal and real to you, a typical person, typical childhood (sans all the moving) and a typical education and career.

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