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