Weekly Update 6-26-2012

We have been doing pretty well in the land of us.  The kids are really taking to their school lessons, I'm making sure that we stay consistent during the summer so that their minds can stay active and flexible.  Even if all my children were "neuro-typical" (which they will one day be) I will do the same.  I don't believe that summer is the time to stop learning.  Learning is supposed to be a continuous process.  

They also keep the same schedules year around, although there is a bit more freedom in the summer not too much.  Here's why, summer vacation in the Michigan school district that we're in is roughly 81 days.  Because of my challenges and the challenges of my children it is not worth it to me to break a schedule because of the amount of time and energy it would take for me to get them back where they need to be.  Plus, in real life you don't get a summer vacation, not even if you're a teacher because many of them have to take on summer jobs like college students to supplement. So this is also a life lesson. 

So this weekend I made a discovery that proves my consistent point even further. My oldest son has pica, he eats non-food items. Now my husband and I noticed a trend, the problem gets worse on the weekend or when he is extremely bored or has a lot of unstructured time.  So this past weekend we caught him eating quite a few non-food items mainly rubber.  This has been going on for a while, my  husband said that he noticed it getting better with the Neuro-Feedback (I just noticed the seizures) but this surge in eating non-food items could also explain many of his stomach issues. I don't know why I never thought of this piece before.  

So we have decreased tv time again (we cut off our cable television service and have Netflix and Hulu it allows us to better control what our children are watching.), we constantly make sure that he doesn't have non-food items in his mouth, and try to reinforce that we only eat food.  It's going to be a long road but we'll make it.  

School work wise he is doing pretty good, working on his focus and attention to detail. Making him write slowly and neatly is a challenge but his working on it with some resistance. We are also working on his already strong math skills, reading recall, building on reading comprehension, money and time.  He got a summer bridge book from school and his teacher Ms. Wentz was wonderful to print a lot of work with for us to help us stay on his goals.  We have also started the SAS music therapy again to hopefully help with his focus and to perhaps help his mind with that sensory piece to help out with that pica. He has also started the chore of taking out the trash. There have been no seizures over the past week, nor have their been any seizure like preludes such as, bad gas, screaming, loopiness. He is eating less gluten (we're not entirely gluten free), we have decreased computer and television time, we are doing Dr. Goldberg's eating protocol by removing things with dies, or the color red. He takes aloe vera juice, lots of probiotics (by way of keifer and acidophilus) activated charcoal and Methyl B-12 tabs.

Jai Lynn is doing great this summer, helping in the kitchen and around the house, learning how to use a dictionary and look up definitions thus learning the meaning of words.  She is working hard on math. This week I have her adding multiple digits, we are working on the parts of speech, reading recall and comprehension and money.  Ms. Wentz also gave her a great packet of work along with a Summer Bridge Book and a Testing booklet to get her used to testing since she will be entering the 6th grade this fall.    She has also begun the SAS music therapy again, I have her listen while praticing her typing skills ( think I will have her brother do the same almost like neuro-feedback)

Mason is working on counting to 10, colors and the alphabet.  We are working on coloring on paper and not on the table or anything else that will stand still.  

The all have a chore, once they get comfortable performing that chore on a regular basis I will tie money into it (the life skill of getting paid for completing a job) but for now we are having fun learning.  

Well that is it for now.

Until Next Time,

Blessings and Recovery,

The Fuller's

"Houston we have a Problem"

So the school year is over and my kiddos are home with me. On the last day of school I said to my kids A.I. aide (Autiscally Impaired), "you all must be said that Jai is leaving being she was the only girl and since girls aren't that prevalent on the spectrum who knows when you'll get another one" The answer she gave me almost made me drop to my knees. She said, "oh we're getting TWO little girls in next fall" I thought to myself WTH is going on??!!! When my daughter was diagnosed with  PDD- NOS back in 2003 hearing about a girl on the spectrum was rare to say the least. Jai has always been the only girl. Girls on the spectrum are like an anomolay.

If this doesn't prove that something more is going on other than "autism" I don't know what will do it for you. This is not text book autism that we're messing with people this is something more sinister. If the medical profession would open their eyes and see maybe more children would be functioning versus being zombies. Maybe that's what they want is a generation of zombies, kids hopped up on pharmaceutical, mind altering drugs. Maybe that's what these organizations want, they claim they are all for finding a cure but there is a cure right in their face. Several bold doctors have already paved the way, why aren't they mowing out the rest of the path? It makes one wonder, are they afraid of the money that they will lose out on if this is not truly autism (and trust me people for many of these kids it's not)? What interests me is that many of these organizations only tout speech, occupational and physical therapy as your main line of defense.

Here's my other issue how does a disorder go from affecting 1 and 10,000 to 1 and 88, damn that's a problem. This is not genetic or developmental this is viral. I used to think, wow because my kids had it and other children in my family had it that it must be genetic in some way. Now I know how untrue that is.

Hearing what I have heard has truly disturbed me, I can't be quiet or sit still. I can't wait really now because I have a feeling that everyone is waiting to see what my children do. So the summer is not a time of rest for us. I will continue to update with progress and changes.

Until Next Time,
Blessings and Recovery
The Fuller's

Weekend Fun 6-3-12

This Sunday Marcus, Jr went bowling with dad and they had a great time.  Dad mentioned how well Marcus, Jr did for the first two games but got bored by the third. All in all they both had a great time together. My husband because of his schedule rarely gets one on one time with the kids, and Marcus, Jr loved the time away although he's not very verbal, I believe that he enjoyed getting out of the house and doing something just with dad.

The boys plan on having some bowling fun later. I can't wait to see what this activities and others do for Marcus, Jr, and how they help him.

Until Next Time,
Blessings and Recovery
The Fuller's

Setbacks

So went to the kids pediatrician today for Mason's 15 month old checkup and asked her about the blood work order. And finally got the real deal, come to find out our insurance (Blue Care Network) is giving her a difficult time ordering blood work from Genova (the best), they wanted her to use one of their labs then have a nutritionist  sit down and talk to her to discuss the results (eyes slanted) . I told her I'd rather wait until hubby's fiscal year ended in September, we'd switch to regular Blue Cross that way we wouldn't need any referrals or anything. So we wait to start on the protocol, in the mean time we continue with the diet and supplements that we are doing. Will be starting our JP back up again as the kids really need it.

Will continue to update during the summer months.

Until Next Time,
Blessing & Recovery
The Fuller's

Life Lessons

Today I took Jai Lynn to the movies to see a special screening of Madagascar 3.  Originally we were supposed to take some of her friends with us so that I could work on some social skills but some things didn't work out this time so we weren't able to use this opportunity for social experience work but I was able to use this chance to teach her about choices and consequences.  While at the movies I told Jai Lynn that we were going to McDonald's after the movies, because we had just had breakfast I would not be purchasing popcorn and soda. She begun to whimper and whine (something we're working on) stating she wanted popcorn, I told her "We're going to McDonald's". She continued to whimper, I then made a decision do I allow her to whimper and allow attention to be drawn to both of us or give her the popcorn? We couldn't just go home because we had bought other's with us so just leaving was not an option and I was not going to sit in the car to listen to her whine or sit in the lobby of the movie theater listening to her whine. So I made a decision:
"Jai Lynn if you get popcorn and soda now you will not get McDonald's, so do you want popcorn now or McDonald's later"
"I want popcorn" she said
"Are you sure" I asked "This means that you will not get McDonald's if you get popcorn, do you want popcorn now or wait for McDonald's"
"I want popcorn, I don't want McDonald's"

Now I knew what was going to happen, she was going to eat the popcorn and when we got to McDonald's after the movies she was going to make her request, but I had to begin teaching her the lessons of choices and consequences.

So, off I went to purchase her popcorn and soda. Once the movie was over I drove to McDonald's. The first thing out of her mouth was "I want McDonald's" I stated "no you don't get any you chose popcorn" And the whimpering, whining, self talk, crying, bad attitude, began.

In all of that she stated, " I wanna die" I stated "no you don't, you're just upset and it will be okay there is food at home for you to eat", then at some point she stated that she was stupid, " stated you're not stupid you just made a bad choice and that's okay, we all make bad choices and now you know"  After that she was pretty much okay.  When we got home she grabbed a snack, went into the basement turned on Netflix and begun giggling watching her show.  I'm not even sure if she was hungry (silently laughing) but if she just wanted what everyone else had.

But, today she learned (again) about making choices, this is a lesson that we have done before and she learned in that instance but new circumstances often cause a girl to have to think again.  So this was a wonderful albeit uncomfortable lesson for her.

Until Next Time,
Blessings & Recovery
The Fuller's

May, May the end of May

This month has been filled with many ups and downs as all my months are.  We started out the month strong with less seizures, more speech, less meltdowns, we ended it with still a lot of up but it seems as if we are back on the seizure yo-yo.  We are not really doing any supplements we are doing:
keifer
aloe vera juice

That's it, we have really toned down STILL waiting on this pediatrician to order this darn blood work. But she keeps putting it off saying she needs to read the book more (for those not knowing what I'm talking about check out the blog posting Updates) information on what tests Dr. Goldberg is talking about to make sure that the tests she runs don't overlap what he does.  For those that know me know that I am a VERY detailed mom, I didn't just give her the book I gave her:

• The book 
• DVD's of video of Dr. Goldberg that I downloaded off the internet
• The questionnaire from page 98-101 for each child
• The lab workup list from page 102
• medical records

So you see people I just didn't hand her a book and tell her what to do.  Now in saying that I do totally understand her wanting to do everything right and us not having to re do any tests or taking tests that are unnecessary. But, my patience is running thin because now I hopefully have a protocol that could be life changing for us all but we can't start it because the doctor is not doing her part (in my eyes) It's been a month since I introduced this information to her and still we wait.  I don't know if she understands what is riding on this, maybe she does and I'm just.....for lack of a better word impatient. I just want my kids to be better.

So now we are back to multiple seizures but we have still have the increased speech and a little more focus, depending. Jai Lynn has been doing very well, I want to work on her socialization and math skills this summer. Found out at her last IEP that her reading skills are at grade level so we will also be reinforcing her reading this summer with the added comprehension piece.  We will be working on her writing skills and science and social studies.

So, that is where we are. Hoping to give progress updates over the course of the summer, school here in MI will be out in 12 days and I am so ready for it to be over as getting up and packing lunches is really getting on my nerves.

Until next time,
Blessings and Recovery
The Fuller's

May 14, 2010

Today started off pretty well, all kids where in a great mood.  I am going to be adding Mason to this blog as many of the symptoms that he is being to present (ear infection, thrush, etc) are a cause for "some" concern so he will be following the same protocol.

Today Marcus, Jr. was top notch! Had a great day in school, was able to moderate his moods and had great listening today.

Today we just continued to modify their diets as well as no supplements.

Today Marcus, Jr's tutor said that he had a great day, very verbal (he has been lately) very focused and very aware.

So not much to report today just a great day focus wise.

Blessings and Recovery,
The Fuller's

First Doctor's Visit

So, this past Monday, we met with our pediatrician to get the process started for Marcus, Jr for Dr. Goldberg's protocol.  There are a few more pieces that need to be put into place and then she will order blood work for him.

In the meantime we have started with step one of the protocol which includes eliminating allergins from the kids diets.  This includes ALL supplements.  We have been doing the diet elimination for the past month, we have eliminated supplements for the past two weeks, and the changes that we have seen have been pretty good.

Marcus, Jr's seizures are now almost non-exisisent only happening about once every other week, no more four-five seizures in a day.  Jai Lynn's cognitive abilities have increased, she seems more focused and clear.

We have also gotten more verbalization out of Marcus, Jr.  Just this weekend when I asked Jai Lynn did she want water he said "me too." He just seems to be more aware of what is going on.

So we are working on the first step of Dr. Goldberg's protocol which is changing our diet and that is working quite well so we can't wait to add the other pieces so that our children can experience a true healing from this virus.

So, I will try to post everyday as this is not only to be a help to other parents but also a log and diary for us to see where our kids have been and where they are going.

So the tidbit that I want everyone to take today is this:
"Step one is always dietary elimination (including most nonpharmaceutical supplements). The key to helping the immune system is not how many different products and things can one throw into it, but rather how many negative stimuli (primarily foods or other non-pharmaceutically pure ingested products) you can remove form the immune system, in turn allowing the immune system the first chance to start to become healthier" - "The Myth of Autism, Dr. Michael Goldberg and Elyse Goldberg, Chapter 7 page 91.

So parents this means stop giving your kids multiple vitamin therapies at once, start with one and build. Doing multiple vitamin and alternative therapies at once will not necessarily help your child. From personal experience we know this.

True story, when our son was having multiple seizures a day we where doing multiple vitamin supplements (not sure if they where pharmaceutical grade or not I'm guessing not). We where doing:
acetly l carnitine
neuro protek
Divine Child drink
NADH
Vitamin D3
and a few others those are just the ones that I can think of off the top of my head. We didn't change what he ate, let him eat whatever.  During this time Marcus, Jr had extremely bad gas, so along with his Neurofeedback therapist we discussed  modifying his diet and taking out all gluten. As soon as we removed his main trigger (it seems to be regular spaghetti stick he likes to eat them uncooked) the seizures decreased dramatically. Once we removed the supplements they decreased even more and we got more language and clarity from Marcus, Jr. Yes he still has rough days, yes he still has problems using the language in his head, yes we still have a long way to go but that small step has allowed us to make progress.

So this is our beginning. I hope to have video up this week of the kids and their interactions, tomorrow I have to take some documents to their pediatrician and talk to her about ordering the neuroSPECT scans for each child.

This is step one in our journey, please stay with us.

Blessings and Recovery,

The Fullers

Changes

Hello All,

There will be some changes that will be made to my blog. If you follow you will immediately notice that I have taken out the word Autism from my blog title. This is due to me reading (actually still reading) the book "The Myth of Autism" by Dr. Michael Goldberg.  He basically states that what our children are dealing with is not Autism but a Neuro Immune disorder, and for me and my kids what he is saying is making sense.

We will be starting Dr. Goldberg's protocol in May 2012 with both children. My blog will center around us going through this protocol with the assistance of our pediatrician and everything surrounding it.

So, thanks for the follow.

Blessings and Recovery,

The Fuller's

Been So Long

So, I have been neglecting this blog (I have 3 others), because this is the only one not linked to my main creative blog (gotta fix that). But, I'm back now. So just a quick update the kids are fine now but we have had plenty of ups and downs in between. It's been over six months since I last posted and life has been six months worth of crazy.

So let's start with Marcus, Jr, the seizures came back, we're working with his neuro feedback therapist and came up with diet. Now, those who read my blogs know I hate modifying diet, it's time consuming and costly. But, it appears that what he was eating was really messing with him. He was having really bad gas, his stomach was always rumbling and gurgling and he was constantly aggitated. Once we snatched the gluten from his diet it was almost instant, better attitude, no or very little bad gas and a happy tummy. Now, that's not all we did. We also added Aloe Vera juice and higher doses of probiotics, so far so happy. He is currently receiving neuro feedback once a week from Melissa Sklar of EEG Biofeedback of Ann Arbor, she is wonderful. She really understand the important role that diet plays in recovery. Do we still have challenging days? Yes. Do we still have a lot of ground to cover? Yes. But have we made progress? Hell yea.

Just this past Saturday, Marcus, Jr. came into our bedroom and asked to play with my cell phone (he likes Angry Birds), "phone please" he said so I gladly said "yes", he then took the phone and said "thanks" and I almost fell out of the bed! Although the thanks was a bit scripted he used it in the proper context without cues. He's been doing a lot more of that as of late, verbalizing without being told to and understanding what is said to him. That alone has made us as parents extremely happy.

Just this past Monday, his tutor even noted that he was extremely verbal and focused! Since we've changed the diet no seizures, little or no gas. More focused and a better overall disposition. Marcus, Jr. has come a long way in six months and we are so proud of him.

Now, Jai Lynn has made great strides also. She is really beginning to blossom into her own. She has been very verbal, she has really be "getting" social cues and really voicing her opinion (sometimes too much lol) and doing more age appropriate things. She is really catching up academically and learning more each day.

She is also giving us hope more hope to press on and recover our children.

My next few blog posts will be a bit more insightful and hopefully helpful to other parents.

Wishing you Blessings and Recovery,

The Fuller's