Our journey through autism

Posts tagged ‘nightmares’

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.

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