I’m just beginning this new journey but am excited about even more improvements and changes on the horizon if/when we do implement these changes. Here’s the book I’m reading: Gut and Psychology Syndrome.

I believe strongly that parents should be able to make the decision about whether to vaccinate their child—with true, informed consent. After watching only about half of this video, I had to come on here and give the link!—it’s that good: http://vimeo.com/31036452

We are still going strong on the GFCFSF diet and have put Nate’s brother and sister on the diet, too. (In fact, Levi, who is almost 3, has been on the diet since he began eating solid foods!) We see such positive results from this change alone. We do still follow many of the other treatments we started several years ago: probiotics (right now we use HMF Powder by Genestra), fish oil, folinic acid, zinc, l-taurine, DMG, and we just phased out mb12 shots.

Nate is super smart and sweet, is a good singer, is great at memorizing, loves to read. He is well ahead of his peers academically.

His struggles include a strong desire to always be first (and not let others go first) and overreaction to consequences (for example: if I tell him he must stay in his room for a time out for a certain amount of time, he almost can’t handle the confinement and will just fall apart. Or if I say he needs to stop talking and say no more words–perhaps if he was fighting or yelling in the car–he flips out as if not being able to say the next word is going to kill him). And, while he adores babies and also loves being with older kids, he sometimes has trouble with kids his own age. He always wants to be in charge, and so he often butts heads with other kids who have strong personalities too.

I am so thankful for our son. I will keep updating this blog in the hope that it might help someone else!

Here’s a pertinent excerpt:

Baby B.L.I.S.S.*
For our purposes, I have developed an easy way to remember the signs to look for as your young child is developing. When making a diagnosis, my colleagues and I focus on a baby being able to do several early developmental skills around social interactions and play. I have also created some short video clips showing these skills as they begin to develop. The video shows what your baby should be doing by their first birthday for each part of the acronym: B.L.I.S.S.
B = Babbling- your baby should be playing with vocal sounds a lot, making a variety of vowel and first consonant sounds such as b, d, and m – think mama, dada, baba, etc.
L = Looking – this involves your baby looking at you when you talk, looking back at you when they are playing to “check in”, and looking at something you point to, to see what it is.
I= Imitating – your baby should imitate your basic play actions such as clapping hands, waving bye-bye, blowing kisses, or banging blocks together, etc.
S= Sharing – your baby should share enjoyment with you by laughing and giggling for familiar games such as peak-a-boo, or “Sooo big”.
S = Showing – your baby should hold objects up to you to “show” them to you. They often won’t let go of the item, but they want to get your interest in what is interesting them. If they are walking, they may “bring” it to you to show you.
So this is the new kind of baby B.L.I.S.S. I hope every parent becomes aware of and I want you to remember it for yourselves and for all of your friends. Remember, if your friends or family have concerns, by just starting with these questions, you will know almost immediately if you should have an autism specialist take a look. It is important to note, this is by no means a diagnosis, it is just a way to be aware of the early signs so that if this is what it is, the correct course of action can be taken and a diagnostic assessment can be done as soon and as early as possible.

In our experience (although it’s getting harder and harder to remember–it was 4 years ago now!), Nate really lacked in the “Babbling” and “Showing” areas. The other areas were also delayed, but not as severely.

Cases of autism are rising. Why do you think that is?
Some of it is probably due to the way autism is diagnosed. I saw people on the HBO lot that probably have Asperger’s but never got a diagnosis as a child. There has been an increase in regressive autism, children who develop normally, have speech, and then lose it. I think there’s something going on with some type of environmental contaminant. Some insult is getting to the child whose genes are susceptible to autism. I think we are going to be hearing more about epigenetics and autism. With epigenetics you look at how the genome responds to the environment. How things like toxins and diet and other things turn on the switches that regulate how certain genes are expressed.

I’ve read this a few other places, and it resonates with me. Perhaps there is no one “cause” for autism, and something that contributes to causing autism for one child (e.g., vaccines) might not harm a neurotypical child at all, because that neurotypical child’s body isn’t susceptible or predisposed in the first place.

I was also pleased to read that Grandin mentioned toxins and diet. From our family’s experience, we know that diet makes a huge difference–not just for Nate, but for all of us!

“Autism pride” or neurodiversity is a growing movement. Do you think there needs to be a “cure” for autism?
I believe there’s a point where mild autistic traits are just normal human variation. Mild autism can give you a genius like Einstein. If you have severe autism, you could remain nonverbal. You don’t want people to be on the severe end of the spectrum. But if you got rid of all the autism genetics, you wouldn’t have science or art. All you would have is a bunch of social ‘yak yaks.’

I agree that not every minute autistic trait should be erased. Any “autism” still left in Nate is at the “quirky personality trait” level, and I wouldn’t change those traits. (I am instead trying to help Nate learn how best to deal with some of the quirks, like when he gets super upset if he doesn’t win a board game.) For children whose autism is more severe, I believe in embracing the child and working to help that child be able to function in society through language, understanding social cues, and improving what’s going on inside the body to heal what might be hurting.

Sometimes I take for granted how far Nate has come. Here’s a glimpse:

We are so thankful for Nate’s success. We believe the following interventions have been most successful, with God’s help.

• The GFCFSF diet. Whenever we wondered whether this difficult-to-follow diet was really working, Nate would accidentally get gluten (or casein or soy) somehow, like accidentally being given food with an unknown ingredient or being given the wrong snack in class at church. And then we would pay the price in his behavior for a day or two: prolonged meltdowns over the slightest thing (a parent saying he can have juice in just a minute), uncharacteristic whining, crying.
• Consistency between therapy and home. We started using the same language and prompts the therapists did with Nate, requiring he communicate to the best of his ability instead of just giving in to his tantrums or meltdowns.
• mB12 shots. While these didn’t provide a huge jump in skills for Nate like they have for others, we did notice they help him accept changes in routine better. They make it easier for him to go with the flow, to order his world. (We noticed this when we did a challenge/re-challenge where we stopped the shots for several weeks, then reintroduced them and watched for changes.)
• The guidance of our DAN! doctor, who helped put together the right combination of supplements and vitamins for Nate.

Nate will enter kindergarten in Fall 2010, and we anticipate he’ll be recommended for full inclusion in a general education setting. We are so proud and excited.

“Yes,” he replied.

I asked, “Do you know what that means?”

“Yes!” he said. “Well, no. I don’t.”

“It means there are extra special things about your brain,” I explained. “You know how you’re really good at some things? Like you can read? I don’t know any other 4 year olds who can read like you can. And what else are you really good at?”

“Playing games!” he chimed in. “And playing cards!”

“Yes!” I agreed. “And you can remember things really well–you have a great memory. And you are so smart.”

“Yes, I am,” he beamed.

“Those are some of the extra special things about your brain. And of course, there are things that are harder for you, too. Like you know how you have a hard time letting others go first?”

“Oh yeah,” he dismissed, already thinking of changing the subject.

“Well, that’s what autism means for you. You just have extra special things about your brain. Cool, huh?”

“Yeah! Cool!” he replied.

And then we were on to a new subject, and that was that.

We had an appointment with Dr. Mumper at Rimland Center last month. We went through Nate’s current supplement routine, adding a few new elements (magnesium each day to help with his auditory sensitivity/defensiveness; we reinstated cod liver oil to decrease visual stimming/using peripheral vision; we also reinstated probiotics, especially for if/when he goes on antibiotics; glutathione lotion, which has myriad benefits; and a 10-day course of two strong antibiotics to nip some possible clostridia in the bud). Dr. Mumper also recommended we take Nate back to the neurologist who originally diagnosed him two years ago, because she believed Nate would no longer qualify for the diagnosis! I have made an appointment with the neurologist for the end of this month; from what I know of her, she would be very reluctant to remove a diagnosis from a child, but Nate would still score much lower on the CARS test he originally took.  (His score in March 2007 was 43.5, which placed him in the “moderately autistic range.”)

When Dr. Mumper asked us what one treatment we believe has helped Nate the most, Jon and I agreed it is the GFCFSF diet.

Nate’s next IEP is in April. I’m very interested to hear the things his teachers will say about him, since they will have had a year with him. We are optimistic about Nate being mainstreamed by kindergarten (which will be September 2010), as I can already see Nate starting to bring home more negative than positive behaviors from his peers at school. We love this amazing boy!

P.S. After reading some of my older posts, I realized I should also update that Nate is now a good sleeper. He goes to bed at 8:00 (usually plays in his room, but then turns out his light and is in bed by 9:00) and almost always sleeps until 6:00 or a bit later. Waking/needing one of us at night is rare for him now–and it has been for probably 5 or 6 months.

1. Way back when we were only doing enzymes (not diet, no other supplements), I ran out of both kinds, and they were backordered on the website I order them from. In in the interim, I went to a local health food store and got some enzymes, but they were not high quality and had such a low concentration of enzymes that it was essentially like giving Nate nothing. In that week, he started whining/fussing/crying all day like he used to and had many more meltdowns and tantrums. At that point, he really didn’t have much language anyway, so he didn’t lose much in that area. When the correct enzymes finally arrived, I started Nate back on them full force. Within a day to two days, he was back to being happy and bright-eyed. And he started saying words, including “hi” and “bye bye” for the first time ever, unprompted.
2. The second example occurred this past month. Nate got a stomach bug and high fever on Thursday, June 19. He couldn’t keep anything down, so I did not give him any of his vitamins, supplements, or enzymes (total of about eight separate items right now) all of Thursday, Friday, and some of Saturday. Even after his fever broke and he was eating a bit, he was whiny and cried most of the day for no reason, not really using words much of the day. He got many of his vits/supps on Saturday, and I started everything back up on Sunday (including his melatonin). Sunday night, he slept through the night. This is very, very rare. Monday night, he slept through the night. I can’t remember two nights in a row of sleeping through the night in months. Tuesday night, he slept through the night. Wednesday night, he did wake early in the morning and come down to our bed, but he did it quietly (in the past months, when he wakes, it is with loud crying, and Jon has to go get him). So, in the past week of nights, he has slept through the night many nights and only cried one time. That is monumental for him. We are all getting more sleep!

It is encouraging to figure out that the things we’re doing for him are working. His jumps forward might also indicate that he would do well with higher doses of certain things, but I don’t know if our family wallet can manage that right now.