Our journey through autism

Archive for September, 2011

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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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.

Pitocin, autism link…

I came across this article from Twitter today.

This part of the article especially makes sense to me:

“In spontaneous labors the mother’s pituitary gland makes an endogenous (i.e. internal) oxytocin that triggers the physiological onset and progress of labor. The hormone oxytocin is also produced during breastfeeding (causing the let-down of breast milk) and it accompanies sexual orgasm. For this reason it is referred to as the “love hormone” by obstetrician Christianne Northrop, MD as each of these biological events are associated with experiences of great emotional bonding and include meaningful social interaction between the individuals involved. Since autistic disorders produce an inability to make or maintain affectionate bonds or have normal social relationships, one cannot help but wonder if perhaps there is an causal relationship between these disorders and exogenous sources of an artificial form of oxytocin. Perhaps flooding the immature body of the fetus (especially boy babies) with this gender-specific synthetic hormone from animals somehow interferes with the eventual function of these psychological systems. It is an intriguing question.”

I was given Pitocin to induce labor the day I was 37 weeks gestation, my OB saw with the growth restriction it would be safer for the baby outside the womb, they checked me the day before I gave birth and found I was already 3 cm dilated, the night before I had reached 5 cm. I think I would have gone into labor naturally within a day or two maximum and wouldn’t have required to be induced. Allaho a3lam, cant go back in time, but if Pitocin is the cause of my son’s autism then I’m really pissed off at my OB and pharmaceutical companies.

Have you been induced and have a child with autism? If so please fill out this open discussion.

His Birth

A month before my due date my mom started joking that I will give birth soon, my brother and I were both born 26 days before due date and she said as I was already copying so much from her pregnancies that I would give birth at the same time. So 26 days before my due date, a Monday I had my regular OB check-up, an ultrasound and a NST. I did those and they said that on the ultrasound the baby hasnt grown in the past two weeks, and it would be better to induce labor and have him born. They decided they would do that the next day, the day I turn 37 weeks gestation, they check me out and find that I am already 3 cm dialated. They tell me to go home, pack my stuff and wait for the hospital to call me and tell me my room was ready, I was to spend the night just in case. My mom and I go home, I call my husband, he was having iftar (Ramadan fast breaker meal) with the family and I got to talk to all of them and get squeals of excitment and all. At 7 pm the hospital calls and say they are ready for me, and off we go. Get to the hospital sign in, get checked out, say I am at 5 cm and go to sleep, wake up early the next morning take a shower and get hooked up to the inducement drug Pitocin after 5 needle poke attempts, I was fine and comfortable from 7 am till 11 am when they come in to break my amniotic sac and that’s when the pain started it was like my fluid was a pillow against the cramps, with that gone the pain really started, I didnt want to get an epidural and asked for something else they told me there was a pain medication given in the IV that lasts an hour and I could only take 3 dosages of it, so I take the first one and fall asleep it was so good, it wore off after the hour and tried to bear the pain before I asked for the second one, asked for the second one awhile later and the nurse kept asking me why I didnt want an epidural, I said I heard too many complication stories about it and really didnt want to poke my back, she said with 20 years as a nurse she’s never seen any complications and its perfectly safe and it totally wipes out any pain, so I finally agree, she said before they can give it to me they have to empty a saline solution bag in my IV and that would take some time, as soon as she starts it and leaves I feel pressure and think its the baby’s head, we call the nurse and she said yes I was crowning and there was no time for the epidural I have to start pushing. My OB comes in and they tell me to push, I remember the pain mostly of my OB pushing the skin from around the baby’s head, and the worst was the episiotomy itself , I remember telling myself that if I wanted all this pain to end I must push with all the strength I had and get it over with and I did that with the next 2 pushes and Bilal was born at 12:39 pm almost 6 hours after I went into labor.

Bilal at Birth

He was 4 lbs 12 oz and 17.5 inches long. He was considered a low birth weight baby and was checked out every couple hours, my milk hadn’t come in yet so he was started on formula and a breast pump was brought to my room.  He was not jaundiced and we were released 2 days after he was born.

Crib sticker

The Pregnancy

If I can pinpoint anything to be the cause of Bilal’s autism it would be my pregnancy, with all that went wrong alhamdullah (thank God) its a miracle that all that he came out with was autism.

Bilal was conceived 6 months after we got married, I wasnt on any birth control or needed any fertility treatments, all natural. I quickly gained weight, I didnt suffer from any morning sickness or nausea other than from bad smells, like in bathrooms, trash, raw foods, instead of smelling bad they smelled 100% worse to me, my only aversion were to eggs in any form, and I craved food, lots and lots of food. I hated the taste of my own cooking so had a lot of take out and a lot of my mom’s home cooked meals. Another symptom I had was the inability to fall asleep at night, I just lay there awake for hours and by the time I finally fell asleep it was time to get up for work. I was working an 8 hour day as a business teacher for grades 9-12 up on my feet a lot, using dry erase markers and other teaching/office supplies. At five months it became apparent that my husband would have to leave his current job in Riyadh and we would move to Egypt, I hated the idea of that more than anything and there was a lot of stress on my part and also around that time I started retaining water, my ankles and fingers were swelling, but everything looked fine at the OB’s office. We packed up and moved to Egypt towards the end of my 6th month, I was very unhappy about the move, I was still gaining a lot of weight most of it from the water retention. One day I got really dizzy and it turned out that my blood pressure had spiked up, at one time it was 160/100 I was prescribed Aldomet 250mg, the OB told me to take 2 pills/3 times a day for a total of 6 pills a day of 1500mg. I just had to get out of Egypt and worked out me traveling to the US and staying with my cousin till delivery. While waiting for the travel day to come I got a severe ear infection in my left ear and was prescribed Augmentin an antibiotic to treat it.

I came to the US during the middle of my 7th month, my blood pressure went down, not normal levels but way better than it was in Egypt, my stress leveled off and I was happier, still very swollen with water retention and heavy but feeling good. I went to an OB twice a week, had several ultrasounds to measure the baby, blood work done, non-stress tests (NST) once a week, I was well looked after. I was diagnosed with pregnancy induced hypertension or borderline preeclampsia, still on Aldomet but a lower dosage. At the 37 weeks ultrasound they saw that the baby hadnt grown enough in 2 weeks and decided that I should be induced and that the environment outside the womb would be better for the baby.

So that was the pregnancy, research has shown that high blood pressure and stress increase the risk of autism, but then again a lot of mothers have high blood pressure but don’t have autistic children, I was one of them, my mom had preeclampsia while pregnant with me, her blood pressure spiked way higher than mine every did to the point where a C-section was the safest option… so was it the pregnancy or medications that caused his autism, I like to this so, I had no control over my blood pressure, no control over getting an ear infection, it was all out of my hands as it was his autism, all a trial or gift from God…

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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