OUR STORY....START HERE.

For the first year of Christian's life we thought he was doing well. We were 19 and 21 and didn’t have another child to compare him to. Now we can look back and point out the signs but at the time we had no idea. Shortly before he turned one, we decided to approach our pediatrician and ask if it was typical that he wasn’t speaking. I was working nights at a restaurant and I noticed that some of the kids close to his age that I would see were doing things that Christian couldn't do. We were told not to worry and that it was common that boys developed slower.  My father in law had seen a news special about a toddler with autism and he called us saying that Christian had a lot of the traits being listed.  I brought it up at the appointment and I was told to get that diagnosis as far out of my mind as possible because there was no way that he had autism.

The week of his first birthday he came down with a double ear infection and a high fever.

My mama instincts were kicking in and I felt that his sickness was more than a common virus. In this picture shown above he is just coming down with the fever and the ear infections. I remember having a really bad feeling about it and wanting to just hold him tight. After he saw the doctor, he was given 10 days of amoxicillin.

 After that round of antibiotics ended we went back to recheck his ears. His fever was gone, but his ears were still infected. He was then given 5 vaccinations and we were told we were going to have to do another round of stronger antibiotics.

 10 days later his ears were better but he had 103 degree temperature and he was very lethargic. The doctor said that is was a reaction to the MMR vaccination, it was common, and it will pass. Our instructions for care said “reassurance”. Hmm..

The fever went away eventually and so did Christian. He still was not progressing, he was not talking or making eye contact and by this time it was very clear that he was developmentally behind.
 Two months later we put him to bed for the night and he woke up in the middle of the night screaming like I've never heard him scream before. We got him calmed down and back to sleep but felt very uneasy about the whole incident. The next morning I went to get him out of his crib and set him on the ground and he collapsed. He couldn't walk. I didn't know what to do and since my husband was at work, I called my mom. When she got to my apartment, Christian had spiked and fever and still couldn't walk.

Over the next two days he was seen by his pediatrician twice, a walk in clinic doctor, the local hospital and a children’s hospital about 30 minutes away. We had x-rays done, blood work taken and he was seen by more doctors than I can remember. No one had any answers for us.

 The final paperwork said that the fever and not being able to walk must be a coincidence. I think it was at this point that I realized that I was on my own with this. It was so hard to grasp that they couldn't help us and they couldn't tell me what was wrong.

It took about 7 days until he walked again and his fever broke. At this point we had completely lost him. He was still not talking, his behavior was deteriorating and he wasn't a happy 15 month old like he was supposed to be.

The next four months were tough. We felt like we were screaming for help and nobody was listening. We knew that something was wrong with our child but all of our concerns were being pushed aside. At 19 months of age we finally got a referral for speech therapy and occupational therapy.  We were thrilled. All we wanted was for someone to validate our feelings and let us know that we were not crazy. There was something going on with our son. During our initial evaluations with each therapist there were a lot of questions. There was a ton of paperwork. I remember going through each questionnaire and taking every bit of strength inside of me to force myself not to burst into tears. How many words does your child have? Zero. Can your child feed himself? No. The answer was always no. What I learned from those questionnaires was that my child was not doing anything developmentally on time. He was below average in cognitive skills, social skills, expressive and receptive language, gross motor, fine motor and self help skills. He qualified across the board for speech and occupational therapy. I was then, finally, referred to a neuro-developmental doctor for a full evaluation. Shortly after our son’s second birthday, July 15th 2005, he was diagnosed with autism spectrum disorder. 13 months after our first concern was expressed. 13 months of time that we could have been helping him instead of fighting to prove something was wrong.

Autism. I didn't even know what it was. I had never read about it and I had never seen movies about it. The only time I'd even briefly heard about it was when my father in law had mentioned it over a year ago but since our doctor dismissed it, I never researched it. I had never met another person with Autism. I had no clue what I was supposed to do. I knew that I needed to continue with speech therapy and occupational therapy because I could see where progress was being made. At the same time I felt guilty taking him there because he was so difficult for them. He would hit and scream and tantrum constantly but they kept reassuring me that they knew what they were doing, this was their job and not to worry.

We contacted our school district and they sent someone out to our house to meet our son. We then went through another questionnaire with more questions that were just as depressing as the first ones we answered and after that we were told to get him into a birth to three classes with other special needs kids.

So we met with the school people. There are speech therapist and occupational therapist, physical therapist, psychologist, counselors, teachers, overwhelming is an understatement. From there, there are more tests and evaluations and questionnaires. I felt like I was in a fog. You go from spending a year with your child thinking everything’s ok, then a year trying to convince doctors that you need help, then when you finally get someone to listen it’s like you’re thrown into this whirlwind and your old life is ripped out from underneath you and your new life consists of a thousand people evaluating every single little thing about your child. Don’t get me wrong, these people were kind and thorough, they did everything they could to make my son and me comfortable but I can’t help but remember how protective I felt for him and how confused I was. I wanted to do the work for him. Watching him being evaluated was the equivalent of getting my heart ripped out of my body. They wanted him to match shapes and point to colors, ride a bike, play with a doll. He couldn’t do any of it. It was so sad.

After all of the paperwork was done we started him in a birth to three class on Monday mornings.

 I didn't really know what to expect, like I said before, I had never met any child with special needs before. After about 10 minutes in the class I quickly realized that my kid was by far the lowest functioning kid in the class. Good, because he was given a lot of attention. Bad, because he’s my child and I love him more than life it self and it is difficult to see him struggle.

On top of this new life for us, I had just given birth to our daughter so she came along to every therapy session and every birth to three class. From birth she has been in this with us. So every Monday we went to class, I took care of our daughter in the corner and watched my son struggle week to week. He couldn’t sit in circle time, he was rigid, he didn’t want to go down the slide, he couldn’t stick with one task for more than about 5 seconds…but we kept on going…every week.  At the end of the school year he had made a little progress, not much, but I was always grateful for the little things. He didn't hit as much, he could go down the slide and he maybe could sit in circle time a little longer. He had still been consistently going to speech and occupational therapy, again, little progress, not a whole lot, but I’d take it. Summer was coming and with his third birthday around the corner he would be aging out of the birth to three programs and he would be placed in an all autism classroom at a different school. One morning, my daughter, my mom and I were sitting in his therapy office waiting for him to finish and my mom saw a flyer hanging on the bulletin board about a local support group for families affected by autism. She thought it would be good for me to go. I didn't want to. Not only had I never met a child with autism before, except my own of course, I had also never met another parent of a child with autism. I don’t know what was going on in my head at the time, but I didn't want to go. I think maybe now looking back that I hadn't really cried about this life change yet, my guard was up, I was doing my job as a parent, doing what I needed to do for my son and I wanted to leave the crying up to everyone else.  I lost that battle and mom made me go.  It was a Tuesday night at 6:00, in a dark and creepy building way in the back of the property. Not exactly the warmest environment but I found out later that they get the space for free. When I walked in there were only a few parents and I found out that they were doing a cooking class at one of the parents’ houses that night. I had no clue what cooking had to do with autism. So I decided to come back the following month and meet the rest of the parents. This day was the day that my life would never be the same and my eyes were opened up to a whole new way of looking at autism. After we all introduced ourselves and shared our stories the regular discussions began. All these words were being thrown out and I had no clue what anyone was talking about. GF/CF diet, DAN! Doctors, chelating, biomedical….I just sat back and attempted to take it all in but I was confused and completely overwhelmed.  I ended up getting the phone number of one of the moms and decided to set up a play date with her. I liked her and I wanted to meet another kid with autism. I wondered if all of these moms were experiencing the same stuff I was. It’s funny to look back because I seriously thought I was the only person in the world with a child with autism.

When I got to her house, packing along my two kids, the first thing I noticed was her son was doing so much better than mine and that was discouraging. I started to ask her questions about him to see if he had any of the same characteristics as my son. It was then that she told me that they were taking a different approach with her son’s treatment and if I would have seen him 6 months ago, I would be looking at a completely different child. She told me that they were trying a different diet. They had removed gluten (didn’t know what gluten was), casein (didn’t know what casein was) and soy (kind of knew what soy was) and after that they started to see improvement in his behavior. She explained to me all about biomedical interventions, dietary interventions, DAN! Doctors and pairing that with traditional therapies and there were kids out there really getting better. In my head what I got from this conversation was 1. Kids with autism are sick 2. Figure out the sickness 3. Treat the sickness 4. Watch your child’s health and skills improve.

She gave me the name of her Doctor and told me to write him an email explaining who I was and what my son’s story was from birth until now and to really emphasize how young he was.

I got to work, I had copies made of all of his medical records and I went through everything and made a timeline starting from birth and documenting every illness, every vaccine reaction, every rash, the one year ear infection fever stuff, the 15 month no walking hospital escapade, all the evaluations and everything else I could find. I was told the waiting list to get in to this particular doctor, since he is amazing, was about six months. I was seen in three.  He was 2 ½ hours away and our appointment was not only early in the morning but it was on our daughter’s first birthday. So we decided to make a trip of it.

We drove down a day early and spent the night in a nice hotel. My husband and I took the kids to the pool, bad idea with a one year old and a kid with autism and sensory issues.

The next morning we got up and headed to his office.  This day was the first day in a long time that I trusted a doctor.  For the next three hours this amazing man listened. He really listened. I took my time and I told him my story, all while my son ran around his office making a mess. But he didn't care. He was patient and kind. He didn't rush me or make me feel like my child was a burden. It felt like home, like I was supposed to be there at that very moment. When I was done with my story he reassured me that my concerns were valid. My motherly instinct was right.  My child was sick, he was really sick. He told me that he was going to run some tests and from there we would figure out a plan.  The best part about this appointment was that he told me that our son would get better. He would get better. I couldn't believe it. After all this time and all these people and books saying that this was life long and that there was only so much I could do but he would most likely never speak someone was telling me that he would be OK.

When I went back through all of his medical records and all of his baby pictures I started to see things in a different way. I could piece together the puzzle on where things started to go wrong. When he was just a tiny baby he came down with this rash that started on his face and slowly covered his entire body. At the time, we took him to the doctor and they said that it was just a normal baby rash, but now, I can see that it could have been one of the first signs of bad health.

His head was definitely larger than other babies his age

After every set of vaccinations he got so sick. Not just with a low grade fever though. I remember thinking “I don’t think this is OK”.

Another thing I noticed as I went through my pictures is that he had this blank stare in so many of them. Don’t get me wrong, he did smile sometimes, but more often than not it was the stare.

But, I do want to say that I believe that Christian was different from birth. He had some things stacked against him but we didn’t completely lose him until after his first year of life. I have some memories of him making beautiful eye contact and laughing and smiling, but those moments faded away after he turned one.

So we head home from this appointment with a new look on life. We have an understanding of the overall concept of healing our son. We have a plan. We are continuing with therapy, starting a gluten, casein and soy free diet and beginning some standard vitamins and B12 injections. We were ready to make this commitment and do everything we were supposed to do to turn his health around.

So now I’m going to start on a second part to our story. At the time of this appointment our daughter had just turned one. The following weekend, we had only been home maybe 2 days, she got sick. We had a family birthday party for her that weekend and we were all pumped up about helping our son and she got sick. She didn't want to get out of her crib, she had a fever and diarrhea and she was vomiting and lethargic.

We took her doctor a couple of days later when she didn't get better and they told us that she had the Rota virus and we needed to keep her hydrated because it can really exhaust her body with the diarrhea and vomiting.  Eventually the Rota virus went away but she wasn't the same afterwards. She had chronic diarrhea and constipation, a cough that wouldn't go away, her skin was pale, her eyes had dark circles, she couldn't sleep well, she had chronic yeast infections and diaper rash, she had rashes on her face and she was randomly throwing up mucous. This went on for months and no one knew what was wrong with her. Her pediatrician put her on Mira lax to help her constipation and that only made her symptoms worse until we finally had to take her to the emergency room for blood work and x-rays.

We were told that she was constipated and to give her some dried cherries and more laxatives.

She kept getting worse.

We eventually took her back to the doctor’s office and we were told that her symptoms match the Cystic Fibrosis diagnosis and we were referred to a lung doctor.

This is when I lost my mind and had my first panic attack. I remember thinking, I can do autism…I can’t do cystic fibrosis.

All I could think about was that I might out live my daughter, my baby daughter. My son who had this life long diagnosis was just given the chance at a normal life and my healthy daughter who I thought had no health issues might die. It was the hardest day of my life and I don’t think I have ever cried so hard. I was strong with being a young mom, I was strong with autism but I couldn't handle this.

I called Dr. Green’s office sobbing and trying to explain what I was just told. He told me to take a deep breath and bring her in. He would take care of her and she hadn't been diagnosed with anything so I shouldn't panic.

We made that 2 ½ hour trip to his office and ran the exact same tests that we had run on our son and low and behold she was just as sick, if not more sick, than our son. She didn't have cystic fibrosis. I completely lost faith in the mainstream medical world and devoted my life to being my children’s advocate.

He found that she had a strain of E. coli in her stomach that was missed and she had zero good flora in her gut. She was completely impacted with stool and the Mira lax that she was given before was only making things worse.  Developmentally, she was absolutely on track but her body was sick and it needed help just like our son’s body needed help.

So here we are, with another child on gluten, casein and soy free diet. We had a plan of action for her now as well. This actually made our lives easier having them on the same diet it was just very overwhelming with why they had to be on it but we knew it would pay off.

Since our daughter hadn’t been affected neurologically with these issues, she bounced back quicker than our son. After three months on this diet, after a round of antibiotics for the E. coli and other vitamins that she had been deficient in, along with high doses of probiotics, she was looking much better. She still struggled with her bowel since there was a lot of damage that was done but she was coming back to life. This picture was taken three months after she started dietary and biomedical intervention.

In the middle of our daughter’s health problems we were seeing some amazing things with our son. About six months after we started seeing Dr. Green we put him on valtrex for the anti viral effects.

 We gave him his first dose on a Thursday. He woke up the next day with silver dollar sized welts all over his body. He had some on his neck, thighs and up and down his stomach and back. At your first glance you would think that it was an allergic reaction but for some reason I knew it wasn't. I wanted to stick it out. He wasn't in pain, he wasn't scratching them and he seemed like he felt fine. On Saturday we were leaving for a trip to the ocean and as we were getting ready we asked him for a kiss. At this point he had never followed instruction and he had definitely never given us a kiss before with or with out asking. After we asked him, he ran over and gave me a kiss. I thought for sure it was some sort of weird coincidence so I made my husband ask for one…and he did it again, he gave him a kiss. We asked over and over, again and again and he kept doing it. I cried, oh how I cried. For the first time ever our boy really saw us. His eyes were staring straight in to mine and I could feel his heart telling me not to give up on him, he was in there.  A fog was clearing away and we were getting our little boy back.

 

He had a little more color in his face, a little more life in his eyes, he was looking at us and he was giving us kisses for the first time in his entire life. I knew that I made the right decision with the valtrex and something good was happening.

Side note: my great grandma, so Christian’s great, great grandma, who we call “nanny” believed in everything we were doing with him. She was one of our biggest supporters. She was in her nineties and she said that she didn't want to die until she saw Christian get better. The weekend that we started valtrex and went to the beach we stopped by her house on the way home and he ran in the door, looked at her and gave her a kiss. Nanny passed away shortly after this visit…she made sure to wait until her boy got better...

That year we slowly saw progress. Nothing as extreme as the valtrex weekend but we were very convinced that this was the right path for us. For the next two years we saw Dr. Green and kept on chipping away at getting our son back to good health. We limited his diet even more and kept on following what our doctor was telling us to do. It’s a little bit of a roller coaster ride. You have highs and lows. We would take two steps forward and four steps back but we knew the end result would be worth it. So at age three he said his first word, by age four he was finally completely potty trained, by age five he was going back and forth between an integrated preschool with other special needs kids and a private preschool with typical kids and at age six he was in a mainstream full day kindergarten with no IEP and no aide.  He no longer met the qualifications for any diagnosis, including autism and even though we still had him on this diet there was nothing else in our day to day lives that reminded us of our life before. We put in the work, we stuck together and we made it.

I want to make sure that I make it clear that every child with autism is different and every typical child is different. I experienced both. Whatever it was that first affected our son was different than what affected our daughter and to this day, I’m not sure where it all began. It could have been while I was pregnant with them, it could be their genetic susceptibility, and it could be an outside source, who knows. But that doesn't matter, what matters is moving forward, repairing the damage you can and starting a healthy life for yourself and your family. Even though what I went through were the hardest years of my life I’m not sure if I would change anything. Now that we are all generally healthy, I look at this all as a blessing in disguise. We cherish life and our health. I have a deeper understanding of our bodies. I have knowledge about alternative remedies for everyday illnesses that I would have never had if we hadn't gone through what we went through. I discovered that I thoroughly enjoy cooking and learning new recipes and figuring out how to eat delicious food and be healthy at the same time. Our kids have more knowledge about good health then your average adult.  I’m proud of us. What we went through at such a young age is scary and we stuck together and we did it.