Our journey through autism

Posts tagged ‘picky eater’

Myofunctional Therapy

Myofunctional therapy is basically therapy of the facial and oral muscles, (tongue, lips, mouth, jaw, cheeks, etc…) A couple weeks ago Bilal’s OT therapist was traveling abroad and the owner of the facility took over for 4 sessions, she wasnt used to his speech patterns and asked whether he was getting any speech therapy and she suggested that I get him evaluated by her friend and colleague for this myofunctional therapy. We set an appointment, for the beginning of the month but he woke up with a slight fever that day so we rescheduled for the 15th of May. We go in and Dr. Sharon Wexler starts her evaluation, she checks his stance, posture and neck alignment, she explains to me with a mouth and tongue model what a normal swallow should look like and what a lot of children with autism look like. She says infants have a thrust swallow, as they nurse and deal only with liquids they move their tongues inwards and outwards as they swallow as they mature and start taking in solids they swallow by moving their tongues upwards and backwards. As with many of Bilal’s fine motor delays his tongue thrust never developed properly,  also while your mouth is shut and relaxed the tongue usually rests and touches the roof of your mouth but for Bilal its at the bottom, when asked to swallow with your teeth set closed your tongue goes up but for Bilal he had to push it out. She had him bite and chew an animal cracker, he bites with his side teeth and takes a lot of small bites, and swallows it as it is. A normal person will usually bite with his front teeth, chew, move the food around his mouth with his tongue and gather it towards the back and swallow, all this is done unconsciously and involuntary but that’s how it is done. She also had him chase a lollipop around with his tongue sticking out and it took him some effort to stick his tongue out at the correct side, he’s also unable to lift his tongue for the “LLL” position. His tongue weakness explains why he takes a lot of small continuous bites of food so that the new food will push the other food down as he cant manage to swallow it correctly, that’s why he overstuffed his mouth as well. She then measured the strength of his tongue and found it to be weak, and then finally she had him identify some pictures to see how he pronounced those words, he misses a lot of letters but not always indicating a weakness. The good news is that his mouth and lips are fine, no drooling or other issues. She says he’s at the perfect age for this therapy as he’s old enough to understand and follow directions, and to learn to be conscious of his swallow and learn the proper method of doing it. She says speech therapy is great and all, for vocabulary and grammar development but for pronunciation its all wrong trying to build on weak foundations, it will never build up correctly. She does half hour sessions with him once a week while we practice at home the rest of the week. Her testimonials say that parents noticed results within 6 months. It was a very interesting and beneficial evaluation explained a lot of his eating habits, why he only eats these particular foods because its what he can manage, chew and swallow on his own, he doesnt take any hard foods which are apples with the peel or meats, everything he eats either breaks down or melts easily and gets pushed back almost on its own, its also why he chews with his mouth open and why he’s a messy eater. She’s still in the research process of the relationship between reflux and tongue weakness, but it makes sense, she says that with this method of swallowing an air pocket gathers and when he burps it pushes up all the food again, Bilal had reflux until he was 18 months. I’m looking forward to this therapy and the results we’ll get, better prouounciation leading to better communication and better eating habits and hopefully a more varied diet.

The only drawback is that The Institute of Myofunctional Studies does not file insurance claims, I have to send in the receipts and wait for them to refund me, so its expensive and time consuming and there is the risk of the insurance company delaying refunds and making up stories of not receiving it, getting lost in the mail and so on, but its worth it inshaAllah.

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.

Tag Cloud