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When my son, Ewan, was born, I knew something was just a little bit different about him. I remember my sister and my mom being in the delivery room with my husband and I when he was born. Everyone remarked at how alert he was, even at just a few seconds old. I remember when the nurse took him to clean him up and measure him that he was actually grabbing her stethoscope and nametag and pulling on them (my sister the OT was in awe of that one). Right after he was cleaned up and weighed, I was allowed to nurse him. I was a little nervous because my first child wasn’t the best nurser and actually latched on incorrectly in the beginning. But lo and behold, the little guy latched on immediately and wanted to nurse constantly. I thought to myself, “Hey I’ve got a good eater on my hands, I’m gonna have to get ready for some large grocery bills as this guy gets older.” I couldn’t have been more wrong. 
We brought him home from the hospital on a Saturday morning and by Monday morning, I was calling the doctor saying there might be something wrong with him. He never slept. And I don’t mean this in a “oh babies sleep in shifts” kind of way. I mean he hardly ever slept. It was like in the cartoons where the lights go out and all you can see are a blinking pair of eyes—that was our son. Long after the lights went out, his eyes were still wide open, taking everything in. During the day he would focus on the shadows made by the blinds in our apartment and stare at them for hours napping only for fifteen minutes after nursing. Our son’s first few nine months were a sleep deprived blur—if I remembered to brush my hair twice in a week I was doing pretty good. That 24 hour super awake state continued from the time he was born until he was about nine months old. 
He was always hungry and he nursed all the time. Nursing a child like Ewan was a little bit like gymnastics. He wanted to nurse and when he did latch on, he nursed voraciously. But it would last for a short time before he would pull away and arch his back (sometimes he was still latched on—ouch!). He wanted to nurse every forty-five minutes, then he would spit up all over the place. His pediatrician was concerned about reflux and wanted to do some tests but the thought of doing that was a little much on a 5 month old. He wasn’t losing any weight, in fact he was gaining weight with remarkable speed. We tried Zantac and other reflux drugs but they never helped. I became a little obsessed with nursing him successfully and so we held out on adding food to his diet until he was closer to nine months. 
To be honest, he didn’t have much of an interest in eating foods before that and didn’t really grab food off my plate so I assumed he just wasn’t ready. He took to cereal (mixed with breastmilk and eventually cinnamon) pretty well but when we started switching to fruits, vegetables and meats, we saw our first food roadblock. I was little ticked and disappointed too because I tried to eat a wide variety of vegetable and meats hoping that Ewan would be subtly exposed to these tastes from the breastmilk! The prediliction towards spices at such an early age was important. At the time, I didn’t realize the implication that the need for extra flavor was going to have on our life! 
My sister, an OT that works with early intervention children, suggested I get my son evaluated at 9 months. This was after months of doctor visits, sleep tests, and lots of advice from others. The pediatrician tried to help but ultimately suggested my son was highly intelligent and just couldn’t turn off his mind. My friend remarked how stiff he seemed when he laid on the floor (he liked to lay on his back) but he achieved all his physical milestones on time. The sleep tests didn’t reveal anything important so why not try some therapy. The evaluation team came but at the time, a problem with self-regulation was not enough to get services. They did suggest that they come back at his first birthday to see how he progressed. Time went by and at Ewan’s first birthday, I think we all (minus my husband) knew that the way he played was a little different and as my sister noted, he didn’t really look at any of us. My husband was in total denial, and when early intervention called to come back and check our son out, he told them he was just fine and we didn’t need any help. 
The next day, my husband and I went out to eat with our son in a busy Japanese restaurant. They kept ringing this bell when food orders came up and they would yell out a lot. A couple came and sat close to our table and tried to engage our son by waving and smiling. That’s when I looked over at my child and noticed that he was literally trembling from head to toe and looked completely panicked. When he started crying (and when Ewan cried—everybody in a five block radius heard it), I took him into the bathroom to calm him down. He was completely freaked out and wouldn’t look at me and finally we just had to leave the restaurant. We took him next to door to a bookstore and let him run around for awhile but he had lost it by then and was running wild. He finally calmed down about forty-five minutes after we left and the next morning (after I found out my husband had told the eval team to buzz off) I called early intervention to get them back out to the house. 
This time when the team came, there were marked differences in his development and he was delayed in all areas except physical milestones. His speech development was way off by then and was really only making approximations of words. He made a lot of growling sounds and screeched a lot. Fine motor skills that had been good before were now behind and he was not able to feed himself with a spoon and fork. At that time, riding in a car with Ewan was almost impossible. He screamed excessively in the car, so short trips were bearable but I vividly remember making a two-hour trip like that thinking, “Dear God, what is wrong with this child” and crying just as much as he was. 
We are a family that likes to go out and do things as a family, whether that’s eating out or going shopping or whatever, and it was becoming increasingly difficult to go anywhere. Trips to the store with Ewan were done commando style (i.e. done at lightning fast speeds all while avoiding crowds and displays that moved or made noise)—it was mission impossible when it came to going to the mall. The words “difficulty with transitioning” were being thrown around a lot by the therapists and they all noted “sensory processing concerns and fleeting eye contact” on all their evals. In other words, terms suggesting that an autism spectrum disorder was prevalent, although at the time my husband was still definitely in denial (even though he has two cousins on the spectrum). To him, our child was just ‘being a boy’ and because he did smile, laugh, and roughhouse, autism was the furthest thing from his mind. Whenever my sister would mention autism or asperger’s, he would make jokes saying “his son didn’t have ass-burgers” and to leave him alone. 
Regardless of how dad felt, Ewan did start therapy when he was only 14 months old. He received OT, Speech, and DT and eventually we added PT when he was closer to two. By the time Ewan was two we began looking for a diagnosis to help us understand his problems. Maybe it’s not the route everybody would or should take, but it was ours and I’ve never looked back. It helped my husband and I understand the big picture in everything and it motivated me even more to push myself and my son to do more, to learn more, and to be more accepting and creative. His first diagnosis came from a neurologist who said Ewan had a ‘congenital encephalopathy with a marked speech delay’; big, scary words that basically mean—uhh we don’t know what the problem is. 
We then took Ewan to a medical genetics department who did some very valuable genetic testing, all which turned up negative. The confusing part was when the doctor flicked the lights off and held a flashlight beam on an object on the floor. He declared that since Ewan did not flip out during this experiment that he was surely not autistic (you’re probably thinking what I thought at the time—huh?) Both the neurologist and the developmental pediatrician would eventually agree that Ewan most likely had PDD-NOS (I’ve come to realize that pretty much means your child has autism). It was a difficult time for us. Knowing that something is wrong with your child is a lot different than hearing a physician put in clinical terms that something really is wrong. It didn’t help that at that same time, my husband and I were expecting our third child and my concerns multiplied about the new baby’s health and development. 
One of the therapists in the developmental peds office told us that if Ewan did not learn to communicate he would be placed in a non-verbal room when it came time for school. Since I had no idea what that meant but it certainly sounded bad, I was really motivated to get him speaking. The doctors all pushed for sign language or alternative means of speaking and when our developmental therapist suggested a visit with an augmentative communication specialist, we went. We were very surprised to find out what augmentative communication meant, and totally shocked when we thought of our child carrying around an $8,000 communication device—I mean what if he threw a fit and chucked the thing in the toilet? But we were excited at our second visit when Ewan used a device to tell us he wanted to eat pancakes (before that everything, including what he wanted to eat was a big guessing game). So we decided to go full steam ahead with getting Ewan a device but it wouldn’t be until we actually got the device that we would understand the full impact it was to have on all our lives.
In the meantime, Ewan was making progress in all areas, but for every two steps forward it felt like we would take a step back. His development was uneven and fluctuated all the time. He would say words and then they would change or stop, he could drink through a straw and then all the sudden forget how and we’d start all over, and motor planning issues were becoming more and more apparent. When he would walk up the stairs he would take a step or two and then stop, look down and would have to try to figure it all out again. We added PT at that time to help address some of these issues. 
We also noted that Ewan had poor oral motor skills and was low tone enough that he drooled frequently. We did a lot of oral motor exercises with him to address that but it was a difficult problem to fix. It didn’t seem like therapy at the time, but eating lots of suckers, licorice, and blowing feathers around the house did help. Eventually, the drooling did decrease and after a year of practice we were able to get him to pucker his lips. 
His OT continued to work on improving oral motor skills but the notion of adding more foods to Ewan’s diet wasn’t discussed at that point. We had basically been advised to increase the kinds of flavors Ewan was exposed to. This meant lots of cinnamon and nutmeg in his baby cereal, giving him some dips like mustard and ketchup, and to even expose him to spicy foods. Some of these suggestions worked, especially the cinnamon, but most did not as he would always revert back to the cracker and cheese diet (and later cinnamon waffles). We had also tried taking Ewan off all milk products as suggested by one of his pediatricians. We couldn’t possibly think about removing gluten from his diet as well, or else the child would have no foods left to keep him alive! Ewan had a long history of loose bowel movements from the time we had introduced foods and cow’s milk into his diet. For several months Ewan was switched to soy milk products and we took away all yogurts and cheeses. Absolutely nothing changed, nothing. Now many people will say that we didn’t do enough because we left the gluten in place but I just couldn’t in all good consciousness take away the one food he would eat. To this day I have not been able to institute a GFCF diet.
When Ewan was almost two and a half my husband got a new job and we had to move out of state. I began packing up the house the week before the big move and that’s when the s#*t really hit the fan. The fact that the house was being boxed up room by room, and boxes were piled ceiling high throughout the house was enough to send Ewan into a self-injurious spiral that would last about a month. That’s when my husband broke down and cried for the first time, realizing that something was very, very wrong.
It was at that point that we both got on board with the fact that our child was probably autistic. Things looked kind of bleak at that point. Our child’s speech was poor, he didn’t eat worth a darn, he screamed a lot, eye contact was getting better but still fleeting and now he was scratching himself constantly. Oh and don’t forget we had a new baby as well, so we were all dealing with that adjustment. When we moved to Illinois the new EI team came immediately and we got back down to the business of therapy but with a new intensity and enthusiaism that my husband and I now both shared. 
The first things we addressed after the move was getting the communication device, to get the sensory problems under control, and to get our child to eat more than crackers and waffles. The communication device would take a couple months for the paperwork to go through but once we received our rental, it took our son three days to figure out the device and ask for chocolate milk. We had worked on getting Ewan to say, “I want” (remember the guessing game) for months and months before the device came, so when he was able to tell us what he wanted to eat, drink, play with, or go see—a whole new world opened up for all of us. Getting the communication device would be the most pivotal moment in our child’s life. We could just see the proverbial ‘lightbulb’ go off in Ewan’s head when he started using the device.

To address the multiple sensory problems we turned our house into a veritable sensory clinic. I called my sister (the OT) incessantly with questions about sensory integration and ways to deal with abnormal behaviors. Ewan was in the very bad habit or pushing me or crashing into me with enough force to knock me down. Once, I bent down to pick the baby up when Ewan crashed into me and practically broke my nose. That’s when I had had enough and my husband and I bought a huge (and I mean huge) bean bag filled with foam to use as our ‘crash pad’. This gigantic eye-sore sat in my living room for months while Ewan and his big sister crashed into it, was thrown on it, and climbed all over it and tried to work out the kinks in his sensory system. 



It was also at this time that we had had enough of the cinnamon waffles and cracker diet that our son placed himself on. We turned to our speech therapist for help and she pointed us in the direction of a feeding team out of St. John’s Hospital / SIU School of Medicine in Springfield. After meeting the team and going through Ewan’s limited diet, the team concluded that Ewan’s extremely restrictive food repertoire was enough to warrant treatment. It was determined that Ewan’s core diet was comprised of approximately 10 foods, almost all of which were crispy, crunchy or chewy, and sweet, salty, and well-flavored. They also determined that Ewan’s appetite was variable and hard to interpret. Some of the interventions that they suggested included rating his food, talking about food, feeling food with the hands, and to model taking a bite—all without stress or forcing him into it. At the time, it just didn’t sink into my brain what all this meant (undoubtedly because my unconscious brain was saying—this is going to be a huge ordeal and take oodles and oodles of your time!). It wasn’t until Ewan had another ‘lightbulb’ moment that we realized what treating this kind of feeding problem would entail.
Since then, Ewan has progressed in so many ways and in so many areas. He has had further diagnoses that include high functioning Autism Spectrum Disorder and possible seizures.  We continue to work with the feeding team out of St. John’s / SIU in Springfield. Ewan continues to make progress with eating everyday. He’s not eating everything we put in front of him yet, but he’s trying new foods and licking new foods and is generally more accepting of something new. 
Communication wise Ewan has made tremendous progress. Since getting his communication device, Ewan has had so many ‘lightbulb’ moments. He now can speak in most situations without the use of his device but he continues to need it in unfamiliar environments or when we are teaching new vocabulary or concepts. Ewan still has a very difficult time giving you ‘all the facts’ so that you can follow his story or conversation. He also has tremendous difficulty with communication and social behaviors. The device has taught him how to respond when people ask ‘what’s your name’, ‘how old are you’, and other ‘generic’ questions. Most of the time, you don’t fully realize the extent of his communication problem unless you spend more than a few minutes talking to him or if you are asking him some specific questions.
Sensory wise, Ewan has his ups and downs like many children on the Autism spectrum. Although I will say that Ewan has great coping skills when he gets overloaded. He does still jump excessively and most people probably get the first impression that he is hyperactive, without knowing or understanding the sensory issues involved. He is still VERY sensitive to sound and we practice with that everyday. Now that his brother is older they engage in a lot of roughhousing, sometimes too rough for my taste! 
Ewan is still very, very insistent on routine. He cannot go to sleep at night unless he knows what he will be doing when he wakes up in the morning. Any change in routine has to be explained in detail. One of his most frustrating routines right now is that I am the only one that he will allow to get him out of his car seat. If dad and I are both there dad is NEVER allowed to help him, it ALWAYS has to be mom. He will meltdown if dad does it and I am there. If I’m not there dad is allowed to help. 
Meltdowns has decreased dramatically as he accessed his device, his natural communication skills improved, and his coping skills have increased. He often demands to know how something works and if he understands that then the anxiety level goes way down. He likes to watch videos about how things are made or he wants to watch video clips on Cosmeo about anything from insects to outer space.
Speaking of intense interests, Ewan has developed many over the past year. He continually adds new interests to his repertoire and really doesn’t get rid of any, he builds on them. He as interests in clocks, numbers, flags, insects, outer space, volcanoes, he likes to take apart things to see how they work (without putting them back together again).

So that’s where we are now. Things constantly change and evolve. Just when I get comfortable with something, the world moves a notch and I have to start from scratch!


I have friends who are good in music like playing instruments and singing but did you know that some of them are have autism. We are doing some recording when they are playing music and do some soundcloud promotion in it.


This just reinforces the idea that lots of thing besides little boys and girls have to eat.