INSIDE OUT

For some of you who know our family, you know that S has been behind in his speech. I suppose we suspected before he turned 1. He wasn't saying "mama"... although much to my husband's pleasure, he did insist on "dada" being a regular part of his vocab. Well, once he turned 1 and he still wasn't saying more than "parts" of words. I knew something was up.

WHAT WE DIDN'T KNOW

There were a multitude of reasons I figured for his speech delay:

1. His father also had a speech delay. This reassured me more than anything. Both S and his father also drooled excessively so I figured genetics and oral motor control had something to do with it. Saying that, S's father spoke well at 2 (according to his mom) and S is now 5.

2. I spoke "Frenglish" to him (mostly French) until he was 18 months old. There were many times he responded to French and not English. Once his "understanding" surpassed my ability to speak the French language, I ended up speaking a mixture of both.
Professionals say you should speak either One Parent One Language (OPOL) or One Parent One Room (OPOR). This, to ensure a smooth transition for both languages. I did neither for S.

3. He is merely a Late Talker. S is a very intelligent little guy. He is a fun loving, fast-paced, smart little guy. I didn't see anything else "wrong" with him when he was 3 to wonder if he also had something else we needed to look into. Sure, he ate dirt. But, so did his two younger siblings. Sure, he had fears. But, so did his two younger siblings. Nothing seemed to make me feel like anything else was up.

But, then... something changed. I'm not sure how to describe it really. It was around the age of 3 that S really started to present certain behaviors that, if he only had one or two of them, would not leave me suspicious. Yet, having more than I felt comfortable with made me question some things:

1. He exhibited obsessive behaviors. For S, picking his nails obsessively manifested the worst behavior. It got to the point where he picked so often, he would peel the top layer of his fingernails off.

Other sorts of self-stimulation, which was occurring was his need for soft pants and short sleeve shirts, chewing on ANYTHING within chewing distance (to the point where it got dangerous for him to sit near an electrical cord).

2. S also had a very high tolerance for pain (although we didn't realize this until his younger, much more cautious brother was born). This did present itself at an early age. It seemed, for S, coupled with his inability to detect danger, he could get hit on the head fifty times, get back up after giving the ground a little rub (we felt at that point that his head and the ground had become quite close) and just kept going with happy enthusiasm. S was also very clumsy. He would walk into walls, falling over obvious obstacles in his path like he was drunk.

These behaviors and many others was when I first figured he could have sensory integration disorder.

*Now, I'm not one to label. I think all of us have some parts of every disorder. But, S... well, S had a lot of one particular set of symptoms in relation to sensory issues and I wasn't going to be in denial any longer.

3. Both B and I felt like we were losing our son. S stopped being so affectionate. I finally was at a point in time where I said to myself "I feel like I'm losing him". Around the age 3, S started turning away when we snuggled with him at night.
Hear me on this: B and I were attachment parents with S. I don't think a moment went by when S wasn't in one of our arms. We co-slept with him at night and never left his side in the day. This boy knows affection and he loved it! So seeming to pull away from us all of a sudden was a really hard deal to swallow.

4. S stopped giving us eye contact. Sure, S would glance over at us and would respond when we talked to him. But, when you compared him to his younger two siblings (and as he got older, those of the same age group), we knew something was up.

Both my sons were guilty of not giving me eye contact as a baby during nursing. I remember this quite clearly. I would hear all the other moms talk about that moment when they look down during nursing and their gaze would meet... I'm not sure what the deal was with both of my boys. If it was just S and not his younger brother as well, I'd have been suspicious, in hindsight. But, developmentally, S was faster than average with physical development and very much giving eye contact at ALL other times. His younger brother, now at age 4, shows no signs of being on the Autistic Spectrum.

5. Obsessions - When it came time for S's birthday or at Christmas, after he turned 3, you KNEW what to get him. It was usually a particular color (orange until this past year when his baseball uniform was yellow). It could also be dinosaurs (had to be T-rex - and he knew details). When he turned four and started to show an interest in drawing, the pictures he drew were so repetitive it was starting to scare me. I felt like I was in a movie looking at those kids who draw repetitive predictions and the scary music plays in the background!
...although, S's pictures were usually of a dinosaur, maze, marble game, or bicycle. ;)

6. Conversation. We always figured it might have been due to his language delay. But, the older he became the more we realized, compared to his peers, that something just wasn't quite relational in his language. He usually spoke to us in a response sequence. Yet, never would he "further" a conversation.

7. Social inability. S loves to run. So, when we're at a park and there are kids around, as long as they're running, S was there to play. Once they stopped running, however, S would not engage. He ignored kids who would ask him his name (turn away from them) and never gave eye contact. Parallel play at the age of 5, certainly was cause for concern.

OTHER behaviors which became suspect as I began to learn more about this autistic syndrome: (note: if your child displays a few of these, he or she is NOT autistic. As with any symptom-list, it is the collective presenting of a certain percentage that deems these symptoms as something more).

-lining up toys
-scripting
-overly compliant
-anxiety/fear
-obsessing over topics and details
-clumsy
-climbing obsessions (needing to be off the floor and craving extremes of such)
-loudness
-self-interested conversation
-aloof
-parallel play (at the age of 5)
-excellent visual memory
-excellent at computer skills at an early age.
-early reader with no "formal" training
-excels in math
-low muscle tone
-video addiction (if we let him) *rolleyes* note: did not even care to watch t.v. at an early age
-late to potty train
-many more…

MEDICAL 'OTHERS', (which I wouldn't accept in my dog. Yet, are deemed "normal" by some of the medical professionals I've sought.)
-constipation
-peri-anal and corner-of-mouth rashes
-red cheeks
-red ears
-constant low-grade fevers
-frequent ear infections
-vaccinated (don't roll your eyes on this one until you've actually read about the vaccines our kids are given to make an informed eye-rolling gesture. *wink* ;)

There is significant evidence that, for those children who have immune-deficiencies, vaccinations should not be given to these children. I will conclude my vaccination-soapbox by saying this: When is the last time you went into your doctor's office and they showed you the ingredients’ list, warning label, and/or side effects for these vaccinations before you passed your baby’s fragile body off to get these injections? We expect these lists in our boxes of cereal but not our vaccinations? We demand to see these labels after you buy ALL OTHER prescriptions and even over-the-counter medications. Hear me on this: I am NOT anti-vaccination! Yet, what we have in this vaccination-pressured medical society is NOT "informed consent".

***Note: S is the only one of our three children who have received all of his vaccinations.

So, where did that leave us? Well, for the late-talking, I had him in speech therapy since the age of 3. He seemed to have spurts every so often but, the older he got, the more he seemed to linger behind in his speech and his "maturity", compared to his same age group. At around the age of 4, however, S did seem to have a language spurt that was uncharacteristic of his previous 4 years. We had the hope that he was finally "growing into his own". S had always seemingly progressed in his language. This was a difficult one for me to wrap my head around until later. I'll get into that further on in this entry, er, novel. ;)

THE EARLY UNKNOWNS

Throughout this journey, S never seemed to mind. We knew him so well that we usually knew what he wanted before HE even did. He was rarely frustrated and NEVER did we see any temper tantrums. Saying that, we worked our butts off to help him through the major temper tantrums he had when he was one year of age! Oh, I remember sitting down with him, holding him in a bear hug for over an HOUR while he settled down. I whispered in his ear, how much I loved him and how he needed to find it in himself to find peace. I was consistent and I was persistent. Gradually, he realized that I was going to be there through his temper tantrums and that he was NOT going to get what he wanted until he found an alternative.

I even remember going to Sears one day. I sat with my boy, on the floor in the middle of all the clothing racks, while he screamed blue-bloody-murder. I was calm, peaceful, loving, and gentle. People must have seen this. I still remember some people coming over and saying things like, "good for you"! Haha! Although, other times some would ask if everything was alright. I just smiled and assured them that if I let him feel that this behavior was okay now... here... that it would be the end of my public outings as I knew it. They nodded in understanding.

Looking back now, it's the best thing I think I've ever done for S. If anyone knows anything about EIBI, this was behavioral intervention without my even knowing it.

So here we were, spring of 2009. We had moved to a different province. So, speech therapy was also switched and a waiting list began yet again. Once finally on board with a speech therapist here, I had only seen her twice when I asked her about S's sensory issues. After discussing some of the behaviors I was seeing in S, I was referred to the Autism Team at the Children's Hospital here in our city. Now, first of all, I did NOT think my son was autistic. I merely thought that he had a sensory 'thing' that I wanted some help with to determine what, if anything, I could do for him. I was assured that the Autism Team were merely the specialists that needed to see him in order to get help with sensory integration disorder.

So I went. Reluctantly. So reluctantly, in fact, I called to cancel one week before the meeting. I was greeted with a woman on the other end of the phone that all but insisted I come in just for ease of mind. She further added that she'd seen many families do this same cancelation, only to come back after school started and have to wait ANOTHER three months. So, for ease of mind, I went.

WHY WE DIDN'T JUST "LET HIM BE"

I knew I couldn't help S on my own with the sensory issues. Even with all of my background in Psychology and Family Life Studies, I just didn't really know where to start. Was it a mineral deficiency? Which one? Was it something more? What?

There were reasons I felt it was not Autism even though some things did feel "off":

1. S never had sleep issues. In fact, he slept better than most children. As a baby, out of a possible 24-hour period, he would sleep ON AVERAGE, 22 hours. He did have jaundice as an infant, which certainly contributed to the early stages of sleep. But, once jaundice was removed from his system he still slept that hard! Also, at the age of one he was STILL having FOUR NAPS A DAY! So sleep problems had we none.

2. Again, the typical Autistic temper tantrums just did not exist for us. S was ALWAYS a very happy baby. Even today, his appropriate smile warms the best of those who greet it.

3. We were very lucky. We had an OVERLY compliant child. Once again, we worked quite hard at this. I might not ever know if it was the behavioral intervention I used or just his awesome personality.

For these reasons, I just felt like S was not your "stereotypical" autistic child. Life should have been harder? S should not have been so happy?
These were some of my thoughts when I finally took him in to see the ASD team.

THE APPOINTMENT

In a small room with a psychologist and a student hovering over S in one room, A pediatrician asking me hours of questions in another one-way-mirrored room (not to mention the multitude of questions I filled in PRIOR to even showing up to this appointment), S and I came out of the 3-hour evaluation waiting for them to confer and give me their prognosis.

Twenty minutes later, they diagnosed my son with Autistic Spectrum Disorder.

I was shocked.

A multitude of feelings and thoughts of confusion, anger, hurt, denial, and fear rushed through me all at the same time. I looked over at my son as they begin to tell me that ASD is a neurological disorder that he will have for the rest of his life.

The tears began to fall down my cheeks as I look over at my son and wonder what I had done to him to cause this. Visions of him as a grown man would sweep through my mind as I began to wonder what will now be his fate. I left the office numb.

THE NEXT WEEK

The following days were a living hell for me. Literally. I had no idea, really, what Autistic Spectrum Disorder (ASD) was and what it truly meant for S. Every time I looked at him, this 'label' hovered over him in bright neon lights. "Was 'that' behavior he just did because he has ASD"? "What about 'that' one?" And the questions lingered fervently.

Because I was so ignorant as to what this "symptom", as I now call , of ASD was, it was easy for me to fall into this trap. As I infiltrated the Autistic Societies within my city and the Developmental treatment centers, I was told that Autism should be "embraced". This is a "beautiful part of my son", they would tell me. "Other great people in society also own the same diagnosis", they would say to try and comfort me. I got the very strong impression that even "questioning" this label in my son was insulting to those who did, indeed, embrace their own adult autism.

I also got the very strong impression that this was not something that could be, and certainly should not need to be, "fixed". I was told that my son was not "broken" and did not need to be mended. But alas, I could not stand there and let someone tell me that this was something my son had to live with for the rest of his life. I was not going to let those people who either chose to ignore, or who fought valiantly to try and failed, tell me that this was it for my son. That this was the beginning of his forever-journey with the "broken" relationship I was witnessing over these last few years. That I might not hug my son again with the same passion I once knew and that I now see in my other children. Or, in those other moms I watch whose children come running to embrace them.

For me, it felt like an end.

Now this is a very honest journey for me. If what I have come to know now was not an option, then of course, the love for my son would endure and I would have embraced him and EVERYTHING about him. But, something. just. did. not. feel. right.

I was at least going to "try" to do something, dammit! ...And try I did.

THE DIET

Months BEFORE S was diagnosed with ASD, he would get debilitating stomach pains. Now, remember my telling you earlier how S could hit his head countless times and get happily back up again? Well, these stomach pains would have S on the couch buckled over in pain... at times for hours. It was obvious something was wrong and into the doctor's office we would go.... FOUR TIMES!

Countless doctor trips, with not ONE giving me ANY tests for my son, I decided to take one particular doctor's advice. After asking why they weren't even going to run any tests, I was told that they don't actually run any tests unless they "see" or can "feel" the problem. No wonder we have to take our health into our own hands! *rolleyes* ...well, that's a whole other can of worms that I will leave for another topic.

I was told by this doctor to "look into his diet".

As being already vegan and citrus free (citrus free due to numerous peri-anal and face rashes shortly following eating citrus), I wondered what the heck else I could remove from his diet that could be contributing to this stomach pain!? S was "regular". He had a bowel movement every single day with the rare exception of one every two days. When he was younger, however, he would be constipated a lot. Potty-training him was quite easy for pee'ing. Not so easy for Bm's. But once he turned four, this wasn't an issue any more. At least I thought.

So, with no help from any medical practitioner except one doctor (who didn’t want to do anything yet, turned out to be the best advice yet), I decided that I would remove gluten from his diet.

S CRAVED bread!! We always commented that he could eat bread for breakfast, lunch, and dinner if we let him. To give you an idea of how much our whole family loves bread, we would go to the grocery store and buy a couple of loaves of multigrain bread loaves. By the time we got to the checkout... most, if not all of at least one loaf was gone! Mind you we had two other children with us to help S out, but, yes... we loved our bread.

Around that same time was our appointment for the diagnosis of S's ASD. One week later, S ends up with constipation of FIVE DAYS!!! He gains a fever (oh yes, fevers... S was prone to low grade fevers for months. Again, something the doctors saw no problem with). His fever was low-grade but, enough to get me worried. My god-daughter was hospitalized for this very same issue. The bowels were inside her for so long it became toxic and of course, a fever was indication that her body was fighting something. So, without hesitation I by passed all the doctors who would not do anything for my son and took him straight to the ER.

Ohhhhh, that x-ray picture. I still see it in my head now. My poor son had stool and whatever else so far up the ying yang that you could see it in his digestive system all the way up his ribcage! This was no normal constipation.

As I reported to the acting pediatrician, I had just started S's gluten free diet a week prior. Looking back now I realize: this was S's body responding... and fighting back hard.

THE CHANGE

Mere weeks after we took S off of gluten (and became strict with casein as we were not strict "out"side of our home), both B and I noticed that S started to become a different kid.

S started looking at us more. He starting coming to us for affection, being more conversational and seemingly lifting out of some sort of fog that we've not quite seen before in him. In the days to follow, I had decided I would look into this "gluten" thing and try to figure out why we were starting to get our son back!

It was only then that I stumbled upon the gluten free, casein free diet. The light bulb struck. This diet has eliminated or minimized the Autism Syndromes in thousands of kids like S.

I can't tell you how much I cried. Of course, as a mother, you know how guilt overtakes us at times. Was this what was wrong with my son all this time? Was he Autistic because "I" kept feeding him this food!? Have I contributed to damaging his system so much so that it was affecting his whole life?

Well, for those of you who are on this journey with me, you know it's just not that simple. We just can't go blaming ourselves. It is what it is and we're doing something 'today' to make the change. Of course, had I known, I never would have kept feeding him all the bread he ate.

Also looking back on the changes I would have made, was in giving S formula in the first days of his life. He had jaundice and the nurses in the hospital wanted to supplement him until my milk came in. With all of the ear infections he had in the first year of his life (I wrote about earlier), it wasn't until we became vegan that I realized these ear infections were due in part, if not in full, to S's sensitivity to dairy protein. This particular diet change, of course, was AFTER a doctor threatened my kids with ear tubes.

I, of course, see some optimism on our past decisions. All of us struggling with kids on this spectrum have many. I know that there were decisions I made that prevented S from falling further along on this spectrum.

I have to remind myself of them every day.

OUR LIFE TODAY

We have now been on this diet for over five months. I can't explain to you enough, the difference in our boy. Both B and I feel like we're getting to know our son for the very first time. After less than 6 months, he is unlearning poor speech habits and growing in vocabulary faster than his past years combined! He is talking to us in ways we thought we would never hear. Every single checklist that I mentioned previously has been minimized, eliminated, and/or “normalized”. We are actually hearing the thoughts that go on in our little guy’s mind with more maturity and ease.

I still cry every time I think back to when I was told that my "son has a neurological disorder and he will be like this for the rest of his life". If it were not for perseverance, despite the beginning frustrations of being on this diet, we would not "know" the true potential of our son as we do now. We would not hear nor know the fullness of his heart.

I don't believe my son was born with a neurological disorder. I do believe my son HAD a neurological disorder that he was predisposed to having, given his environment. I now know there were root causes that pushed his neuro-chemistry over the edge that would not have otherwise occurred without it.

At the moment, my journey does not end here. I am still suspect of more intestinal issues. Candida overgrowth is one of them. This makes sense with the recovery from gluten and the citrus diet we had him on. Right now, we’re taking things slow and not introducing or taking away anything too fast. But, I'll have to get into that another time.

Until then, for those who have children with Autism, ADHD, and Asthma, might I strongly suggest you look into their diet?

We were not even recommended to a dietician when we were told our son had autism. The behavioral intervention they subscribed for us was the only hope they sent our way. Since then, I’ve seen experts out my wazoo. They all say the same thing: “You are not alone. Many families are telling us quite similar stories”.

It begs the question, “Why then, did they send me out that door, seemingly, all alone?”

Guess when my next appointment is… Next May, 2010.

Even if this diet, in their expert opinion, does not have the drastic effect it did for kids like mine, why not send a dietician their way to at least try? I was lucky enough to “stumble” upon this diet all by myself. In less than six months, my child went from Autistic to “Non” due to diet alone. Countless stories just like mine are out there.

I hope this story helps us understand the importance in the role of food and what it can do to us and to those even more susceptible, our children.

Thanks for reading about our journey. I am, just now, starting to talk about this publicly and the support has been great. S’s social development has no longer stopped in that hourglass as it once seemed to. His sand is now flowing smoothly and I am on the fight of his life.

**I've went back and forth on the term "syndrome" vs. "symptom". In the end, people resonate more with the term 'symptom' and I've therefore chosen to call it that. Autism, in the case of my son, is not a disorder based on a neurological disease he was born with. Autism, for my son, is a symptom with a root cause. Lets not stop at "autism". Lets discuss why something amazing happens for many of these kids when they eliminate certain foods, treat viruses, yeasts, bacteria, etc. from their bodies and why... *WHY* autism is recovered when these aforementioned root causes are eliminated.