I believe there are events that happen in your life that make you, that set you on your path of who you are going to be. I also believe that they can happen at any time in your life.
Do you ever look back on past events and perhaps the way you felt or acted and want to slap yourself? Of course you have, we all have. That’s been me during this past year. How naïve I have been and how naïve I ultimately wanted to be.
In the first quarter of last year we were in the throes of Amelia having back to back ear and throat infections and literally being on non stop antibiotics and steroids, believing with each new treatment that this would be the one to cure it. We thought she had allergies. We thought she had Asthma. We knew she needed ear tubes. The way the first quarter of last year read on our blog and on Facebook was like a sick joke. In fact, I would often be dripping with inappropriate humor and sarcasm because without it, all that would have been left would have been tears.
Around the same time I was also so incredibly anxious to hear Amelia’s first words. The school she was attending at the time suggested we get speech therapy as a way to help her start talking. OK, it was worth a shot. So we started the application process. We would have been seen much earlier but each time they called for an appointment Amelia was ill. This went on for two months. Really.
I had it in my mind that a month of speech therapy (one or two appointments a week) would fix all this. How foolish I was.
By June we were ear infection free and antibiotic free. We were using the nebulizer at night, giving her a preventative steroid treatment. Facing the very real possibility that she may have Asthma like me. The allergist said she didn’t have allergies but he thought she could have Asthma. Despite not being doctors, we disagreed about the allergies and still believe that when the yellow pollen rears it’s ugly head she’s terribly affected.
June brought the beginning of speech therapy. By the end of August it was becoming clear that this was going to be a permanent fixture. When September hit Hannah, our beloved speech therapist, announced that she was pregnant and going part time. We had to find another therapist. It took a month.
When the new therapist sent the paperwork to our pediatrician in October she called us herself and asked us to come in because she wanted Amelia to have a developmental evaluation. Uh oh.
At this point I needed to find my big girl panties and come to terms with what I
thought knew she was going to say.
At the appointment, the doctor told me that she wanted to give Amelia the MCHAT test which measures flags for Autism Spectrum Disorder. I was ready. I knew she was going to flag up. Some of the questions were:
If you call her name will she look at you? – Um no.
If you point to something will she look at what you’re pointing at? Nope.
Does she like to climb stairs? Yes…
Can she say words that you ask her to say? I wish!
Sure enough there were enough red flags that we needed to get her evaluated in Charleston. A three month wait. Great. Once we had digested this I got into research mode.
I take after my dad when it comes to finding a way to get what I want and need. Now, in everyday life, that may not always be a good thing but for this it was great. I find I always work better under pressure and so I went to it. Within four days of Amelia flagging on the MCHAT test I had discovered the biomedical approach to recovering from Autism and I was fascinated. Not being particularly strong at science was a small downfall to begin with but now I just find my thirst for knowledge is enough to understand it. I realize this because when I knock around theories with Sara and my Mum it is clear I have lost them. Though Mum is pretty fascinated by it now, she sees the changes in Amelia and it’s enough. Sara is the same. I am so lucky to have them!
The biomedical approach works synergistically with the classical therapy approach to heal the child. It works on the idea of healing the body from the damage that antibiotics, the environment and toxins (that the body cannot expel) cause. I can’t go into great depth because if I did I would be publishing a book. It seemed that the universal first step was to put Amelia on a gluten and casein free diet. Casein is a milk protein found in LOADS of foods. Even very unlikely foods. It is believed that the guts of Autistic children are damaged and since the gut is often referred to as a second brain due to it being a major site for neurons to fire and transmit, having a damaged gut means that neurotransmitters aren’t getting to their targets. It is believed that gluten, casein and soy are like opiates to the Autistic child and that they actually crave these items like a drug. So they get on this diet, get on some great supplements and things start to turn around.
Four days after the MCHAT, Amelia was on the gluten casein free diet. It was hard. I have since learnt that there are harder things. I have also learnt that I can do hard things. Quite well. I also got her on a great multi vitamin that has very high B6 to help with her speech.
As fate would have it, we ended up at the doctor’s office a few days later and Amelia’s doctor was absolutely amazed at the turnaround in her. There was eye contact, interaction and smiles. When her name was called she actually looked up. Amazing. When I revealed what I believed was the reason that Amelia was interacting, her pediatrician said that there was no medical reason for her to believe that a diet could change so much in such a short time. She is right. There are no clinical studies to back up what we have found to be true. I didn’t need clinical studies, the proof was right in front of me. Her belief system wasn’t going to stop me…I felt I was onto something.
My next step was to find a DAN! (Defeat Autism Now) doctor and to get a BUNCH of books and just go to it. As luck would have it (and it was luck), I found a DAN! doctor in Savannah. The wait was 4 months. Urgh. OK, so I was on my own until then. There was plenty to read and get on with.
My next step in this crazy story was to get her on fish oils. Then onto probiotics and vitamin D3. Then by the middle of December I was looking at DMG (which is dimethylglycine). I had done all of this research myself, looking at studies and reports – the good and the bad. I had started to correspond with the head nurse at the DAN! office and I must have bugged her so much that she jumped me to the front of the line. Before we headed to the UK we got to see our DAN! He approved the approach I was taking and upped some dosages. I walked out feeling excited that we were on track and proud of what I had achieved in such a short time.
In six weeks Amelia had stopped obsessively lining up toys for the entire day. She didn’t line up at all. The tantrums were gone. She was showing enthusiasm to say words, she had finally got rid of the perma rash on her backside and stopped excessively sweating when she slept. She didn’t smell bad anymore. We had eye contact. Less stimming and toe walking. The inappropriate peals of laughter (that we thought was so cute and hilarious) were gone. We even had conformity to *some* of our rules. She engaged us, pulling our hands to get something or to open something. And lastly, she stopped stripping off…yes, naked time was over. She was just, in our opinion, a late talking two year old. But I still knew, in the back of my mind, there were a LOT of issues that really amounted to more than late talking.
After Christmas we had to face the music. Again, being naïve, I thought that we had suffered the worst we were going to suffer on this topic. I was wrong. She was evaluated and diagnosed with PDD-NOS (Pervasive Developmental Disorder – Not Otherwise Specified). That’s OK, I was expecting that. What I absolutely was not expecting was that we had to have an additional 20 hours of therapy a week. It’s called Applied Behavioural Analysis Therapy. Oh.My.Gosh. Really?! We were told to go home and start looking for a therapist. After three straight days of being on the phone, it turned out though that we couldn’t get the therapy. Our insurance has a two year wait. Yes, really. And she can’t get on the waiting list until she turns three. Perfect. Since it runs at around $1000 a week, self pay wasn’t an option. We looked into other health insurance, Adam even tried to go back into the Army. Yes, we tried every channel we could. The therapy was not going to happen.
So, armed with this really rubbish news, the biomedical approach was clearly all we had left. I went back to the DAN! to get Amelia the blood tests we needed to get more answers. We did a food allergy test, organic acids test, amino acids test, porphyrin test and more. While I was there I asked if we could start Amelia on Methyl B12 and folinic acid. We got the nod of approval and the prescription, Right there Amelia got her first Methyl B12 shot. I mean who really hopes that they’ll be able to start their kid on an 18 month regime of shots every three days? Apparently, I do. At the same time we switched the DMG to TMG (it has an extra methyl donor and would work very well with the shots) and also started her on L-Taurine and Sacharromyces Boulardii.
By the end of January, there were so many supplements needed at various times of the day that ended up writing it down and sticking it on the fridge. I learnt through research that some supplements work better alone, some worked better together and some would only work if you mixed them this way or another. It’s a process. But with each new supplement we see an improvement in her language or behavior and sometimes both.
When the tests came back she had 70 food intolerances. Yes, 70. She also had vitamin deficiencies and amino acid deficiencies. She couldn’t rid her body of heavy metals such as lead and mercury or toxins like parabens. She will need chelation to remove these metals and toxins. In the form of a cream, there’s no way I will allow it via an IV. She will also need two or three more supplements added to her regime which I am about to start. It is clear to me that she has gastrointestinal damage and that I have to fix that so that all her food and nutrients are processed correctly. We have started a digestive enzyme protocol to heal her gut.
So, a year on from the infections and antibiotics where are we? I am the mother that most other mothers think is over the top. I have to worry about what paint to use, whether apple juice has significant lead or arsenic in them, and if certain foods use aspartame etc. The only books I read are tantamount to textbooks on the biomedical approaches to Autism, using them as tools for research. If we want pizza night now, I make our pizza from scratch because there are no other alternatives. Amelia is now on a dairy/gluten/soy free diet and also has to avoid nuts (at least until her gut is healed). We don’t go out to eat because there is nothing on the menu Amelia can have and even if there were, I would be too worried about cross contamination. We cannot just throw caution to the wind these days. But she doesn’t do bad either. She gets a fresh made cinnamon waffle in the mornings or even s’mores pancakes, her own special packed lunch for school and we have found plenty of ways to make yummy foods for all of us (including chocolate chip cupcakes). Her new school (Montessori) is awesome and actively helps us with this process, they do research for us, help with the supplements and even make homemade corn flour play doh. I am pretty much gluten free, it’s just easier and for every evening meal we are all dairy, gluten and soy free. We give our little girl a shot every three days, and we work as a team to give her her 13 supplements. We are all healthier and better informed for it.
I am not superhuman. As far as social media goes, have I fallen off the edge of the map? Yes. Absolutely. Am I sorry? Of course. Especially if my friends think I don’t care. But I have a mission and I can’t deviate. If gluten and casein are Amelia’s opiates, then recovering her is mine. I read all your emails and your comments and I think about you all often…I will be back, I promise. Please bear with me. Since we learnt all this and got started on the road to recovery there have been days when I didn’t want to know, didn’t want to see or talk to people, when I was just angry. Really angry. Acceptance of this has been a hard thing. Even harder than acceptance has been the realization that we will miss some of those things that our friends who have kids get to experience. Some people may mash this up to nothing or they play it down but I can’t do that because if I do then I cannot believe that supplements and diet will make a difference. And not just a difference, but something that has changed us all. The biomedical approach has been referred to time and again as experimental. Hmmm, maybe. But it’s a choice we made. We’re all in it, seeing the change. So, I look at it as a lifestyle choice.
So it turns out that even though you know the big moments are going to come, you’re never prepared for them. I most certainly wasn’t. But I have risen to the challenge and I am enjoying it. There isn’t anything I wouldn’t change except for opening my eyes to all of this much earlier. We are seeing a new, more sparkly Amelia and it’s just so amazing to watch her improve with each new step we take.