Sunday, September 4, 2016

Horrible Pain for my boy with Autism

Warning:  Some of you may know what I’m talking about right away, others may not.  If you haven’t experienced the horrible pain some kids with autism may go through, this post may be more than you can handle.  Heck, I can barely handle it myself; but here it goes.

Guess which one is Dante, at one week old.  
Dante has lived with pain for as long as I can remember.  I call it pain but I really don’t know what ‘it’ is.  What I do know is that he cries real tears, he hits or slaps his head, or tries to bang his head against anything hard, he thrashes on the floor or against his bed and it is very hard to control him.  He seems to be in an agony that he only wants to exacerbate with more agony.  I’m sure some of you know exactly what I am talking about.

Friday, August 19, 2016

Sharing and Connecting in order to heal

Hello Everyone! 

It has been quite a while (over two years!) since I last posted and, as you can imagine, the roller-coaster ride that is autism has been very challenging these last couple of years.  But we have been in a good place for a couple of months now and I really want to connect and share some observations once again. 

Before I do that, however, I need to give a shout out to a woman, Karen Elmquist, who, back in October 2015, read one of my many desperate facebook posts about my son’s seizures and reached out to me with advice.  She understood what we were going through because of her own son’s experience.  This short message from her has helped turn Dante’s seizures around and, because of this new-found peace, I am able to post again:


One little post from a stranger, one huge impact to our family.  It is because of the power of sharing that I want to write again about our experiences.  It is so important to stay connected.  Thank you for reading!

Next Up:  Let’s talk about horrible pain for some with autism.

Friday, May 30, 2014

A message for my friends...

The other night I was telling some friends about this protocol I was led to by my son’s neurologist.  She didn’t tell me directly, because she couldn’t as an M.D., but she led me to it  J.  When I researched the protocol’s book Healing the Symptoms Known as Autism, by Kerri Rivera on Amazon (2nd Edition), I found the stories of so many older children whose families had tried everything and the kids have been labeled as non-responders (woo-hoo! My kinda kid!).  These children are responding to this protocol and many of them are recovering.  Obviously, some take longer than others.  The older ones take longer than the little ones.

The nice thing about it too is that they use the ATEC score (a quick test to determine how autistic a child is) as a guide of whether or not the kids are getting better.  Well, my boy started with an ATEC of 99 (which is very high given that below 10 is considered recovered).  We’ve been doing a super low and slow protocol (because of his seizures) for the past 7 months and he’s now at 71.  His drop seizures stopped after 4 weeks, although we’re still dealing with grand-mals.

Thursday, January 2, 2014

Small wonderful changes (Thank you, Kerri Rivera!)

Eye contact has been great!
There’s a huge snow storm outside our window and I bet most people probably stayed home this very cold Thursday.  Dante is napping and I at last have a short break to write about the good things we are seeing.  There are good reasons to be hopeful for 2014 at our home!

We started Dante on Kerri Rivera’s protocol for autism during September.  I’m happy to report that as the weeks pass we have more good things and less bad things.  If you recall, Dante’s ATEC score was 99 when we began.  Now I will summarize some of the dramatic changes we have seen.  I don’t mean to exaggerate on what I’m reporting either.  Everyone who knows someone in the spectrum understands how much more PEACE even a small improvement can bring.  That is why any small change is HUGE in our world. Here are a few examples of the small and wonderful changes we have seen:

Hey! I didn't have to cut his hair in our backyard!
Early in December, Dante was able to get a decent haircut with my stylist.  That is the first time in 7 years we have been able to do this.  Not counting the one time a lady tried to cut his hair and nearly had a heart attack when Dante headbutted his head straight into the scissors.  There was no blood or cut that time, but a very frazzled stylist and two very apologetic grandmas.  This time around he did bounce around quite a bit, but Tim got the job done and Dante was very proud.  You can see the results for yourself.

Dante has also been showing quite a bit of initiative feeding himself!  Up to this point, my son has barely used his hands for anything so this is quite an achievement.  We’re working on scooping up the food as well, but the part of bringing the spoon to mouth is going very well.

Not only is he listening to long chapter books, but just today Dante was enjoying new TV shows patiently paying attention.  He’s also sitting to watch TV rather than walking around the whole time.
Sitting comfortably to enjoy his show.
Dante has shown a very good disposition towards answering questions related to reading or other things.  Here the question was:  "What planet do we live in?" after reading There's no place like Space!

We have also enjoyed so much Dante’s new friendship with Dandy, the Scottish Terrier at the house where he gets dropped off after school.  Dandy has always taken care of Dante, but it wasn’t until recently that my boy began to reciprocate.  Dante would always push Dandy away when the dog came to play.  Now they are friends and they play together.  That is huge!

Dante pets his friend, Dandy
This past week I filled out the ATEC once again, focusing on the best days we've had while on this protocol.  Since the kids are healing, their scores will fluctuate based on how they are feeling and doing on any given day.  My son has not had a tantrum in at least a week or more.  He also hasn't been bouncing -- which he could easily do 20 to 40 minutes at a time.  He sat with me during a visit with friends, very content the whole time.  He has just been calm, loving, content, and communicative (not always verbally yet).  Taking all of that into account the latest ATEC score this past week resulted in a 60.  WHAT????  a 39 point drop in 3.5 months? Well, I would say that those 39 points are mostly the gap between a child who was feeling horrible and now a child who is feeling pretty good.  Not perfect, but pretty good.  I'm not claiming he's arrived at a 60 and staying there, either.  I know the score will go up and down, with a downward trend hopefully.  Still, it is a very bright light at the end of our tunnel.  Wouldn't you say?

Please, wish us more improvements!!!

Sunday, November 24, 2013

The Tale of Desperaux

Amy reads The Tale of Desperaux.
Dante signs MORE because she reached the end of a chapter.
Last weekend Amy was reading The Tale of Desperaux to Dante.  It is a long chapter book with big words such as “Chiaroscuro” and “dungeon”, which I’m pretty sure Dante has never heard.   Dante delighted us as he signed “MORE” every time Amy stopped when she reached the end of a chapter.  They stopped reading after 142 pages not because Dante stopped listening, but because Amy's throat dried up!  That’s the longest and most complicated book my son has paid attention to.  Hip, Hip, Hooray!

About Earth and Worms:  On my last post I detailed the long and winding road we have been on that eventually led us to find Kerri Rivera’s protocol for autism.  A few weeks prior to learning about Kerri, I had learned about Diatomaceous Earth (DE). We started giving it to Dante for his constipation.  Weeks later, reading Kerri’s book, I learned that DE helps to kill parasites and that parasites cause seizures:

Diatomaceous earth…properly ground, [is] harmful to parasites, fungi, yeast, worms, and amoebas.
In a presentation by Andreas Kalcker, he stated that high levels of ammonia in the body can cause seizures and the high levels of ammonia in the body come from parasites.

This relationship between parasites and seizures is completely new to me.  What a welcome surprise to find that DE helps to kill parasites! Interestingly enough, four weeks after starting to give Dante DE, his quick nod seizures stopped (he could have up to 30 in a day).  This is a HUGE victory as Dante is most at risk from a sudden fall due to a nod.  The work is not done, however, as he may still have grand-mal seizures.  Here's our latest update...