Author Topic: Benjamin update  (Read 13030 times)

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Offline ride_n_slide1

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Re: Benjamin update
« Reply #15 on: January 03, 2006, 09:58:40 PM »
I am SOOOOOO excited that Benjamin is doing so well.  I really enjoy getting on here ever so often and reading about his success.  Thank you for sharing with us.  God Bless You and your family this New Year.

Offline Pam Cantwell

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Re: Benjamin update
« Reply #16 on: January 07, 2006, 09:13:56 AM »
Wow what a great day.   :()&  Benjamin has been super all day.  Dr Stewart was excited about his test results.   Benjamin is growing back those inner ear hair in his right ear because he is getting an almost normal reading out of it.  His left ear is still lagging behind but Dr Stewart said by the next exam time it would be on the rise also.  He said the Herpes virus was still being contrary but that was because Benjamin is shedding heavy metals and it is wanting to hang on but it has no choice but to let go.  Benjamin will be on Valtrex until April 1st and then we will do another heavy metal panel to double check and make sure he is within normal range in all his metals.  Remember I explained earlier in my posts that they have begun to find that our bodies require a certain amount of heavy metals to function and then it is supposed to shed the rest that it doesnt need.  So, we have to get him back down to normal range. 

Dr Stewart was tickled that we are seeing some good things happening while we are chelating but he said all the REALLY GOOD STUFF will start happening after Benjamin goes off of the Valtrex (anit viral).

I'm so glad to hear Ben is growing those inner ear hairs back. Do you see a change in his tip toeing more? Also glad to hear he is responding better and quicker to all verbal commands. Can't wait until you return from the hands-on training in Plano! Keep us posted!
“When the government fears the people, you have liberty.  When the people fear the government, you have tyranny.”  ~Thomas Jefferson.

Offline Tamet Gould

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Re: Benjamin update
« Reply #17 on: January 08, 2006, 06:53:35 AM »
Well I just had to tell everyone this.  Benjamin is starting to do more and more small normal things.  Just like a little child who has watched someone do something and tries to do it themselves. 

Benjamin was setting on the couch with me 2 nights ago, eating some of his sweet potato chips.  He all of a sudden started scrunching the bag a lot and and I thought what is he doing.  He then handed me the bag and I thought to myself well it is empty now and said as much to him.  But, when I took the bag from him it wasnt and it dawned on me what he was attempting to do was roll the bag up, just like we always do when we get thru eating our fill of chips. 

I never showed him how to do that.  He just picked it up on his own  :)/\\

Also, he as finally figured out how to make that latest 4 wheeler go fast and he is back to wearing batteries out again.  But, get this, the forward and reverse are controlled by buttons and he is starting to put himself in reverse using those buttons now.  Wont be long until he will be doing that completely independent.  Oh, and something else that is so funny that he does on the 4 wheeler; he will go along dragging one foot as he is turning.  Bob says he is doing like our neighbors do when they ride their dirt bikes on their track in their pasture. 

He is calming down soooooo much.  His patience is getting much longerrrrrrrrr.  If something happens that upsets him, he will be okay within just a minute or two, compared to the hours before.

Well just had to share that with you.   Oh, and Pam on your question about the toe walking.  Yes, he is still doing it but has really started to experiment with flat footed walking, like dragging one foot along sideways and then putting it down flat and then dragging it again. 

I dont think I told yall about what Dr Stewart said about Bens world Monday.  He has recommended that we take him to see a theraputic optometrist in Dallas.  Dr Stewart said that Dr Shidlofsky would probably put him in a prism lens glasses.  What they do is make the outer edges, all the way around the glass lens, blurry, and only the center is focused.  What that does it forces the brain to use his macular vision and weeds out his peripherial vision.  Benjamin has relied on his peripheral vision for so long that Dr Stewart felt that it is probably why his is still in the "touchy - feely" world and hasnt moved over to the visual world yet.  He said he thought it would probably make a great impact on his stemming also. 

So, I am writing up some stuff now to see if I can get funding for it from one of his current programs.  I have to keep an eye on the funds he has because I dont want to run out when all these therapies start coming into play.  His insurance will only pay for so much and then they think anything else is useless.  That, I believe is going to have to be my next move, to really start pushing for these alternative therapies that really do impact these children and getting them approved by insurance companies.  It would seem much cheaper in the long run to do things with these kids and turn them around rather than have to support a disabilty for a lifetime.  Kick me, but I think it would be cheaper by millions of dollars to fix problems early rather than paying for them for the life of someone.
Aut viam inveniam aut faciam - I will either find a way or make one.  "Can't lives on Won't street."

Let us be reminded of what Captain John Parker told his army at Lexington Green, the place where the War for Independence began in 1775. He said, “Stand your ground. Don’t fire unless fired upon, but if they mean to have a war, let it begin here.

Offline Mandi

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Re: Benjamin update
« Reply #18 on: January 09, 2006, 12:43:54 PM »
 :()&

Tamet and Bob - you are both such wonderful people. I can't find the words to describe how it makes me feel to hear about all that you have gone through to help out Ben.

God Bless you all.

I'm always so excited to catch up on Ben's progress. All the latest news is just outstanding.
If God brings you to it, He will bring you through it.

Offline Tamet Gould

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Re: Benjamin update
« Reply #19 on: January 27, 2006, 08:22:03 AM »
Thanks Mandi!!!!

Well it has been a long week but a good one.  I just finished up yesterday with the 3 day seminar in Plano on techniques of ABA/VB for Benjamin.  Now, I have to train Bob and Joyce, his attendent.   <DUMMY ME> (Im not sure Bob is trainable, I will let you know  >:D )

We will be taking Ben to Plano and having them set up a Home program for him, they will spend half a day assessing him and half a day training us (by then they will probably be correcting some of the mistakes we have made  (woohoo) ). 

I learned to set up a program for him and we will be implementing it starting next week.  He is what they consider an early learner so most of his program will be carried out in the 'Natural home environment', they call it NE (for your acronym deficient folks like me that is Natural Environment  <PACO> )

It was very exciting again to see all the Video footage of these kids getting better over time and to see all the problem behavior disappear thru situational changes or environment changes.   

I hope Ben can accomplish most of the wonderful things that I got to see.  It just floors me to see these kids change so drastically and I hope the same will occur for Ben.

Gotta run and start catching up from being out of the house for 3 days. 

Aut viam inveniam aut faciam - I will either find a way or make one.  "Can't lives on Won't street."

Let us be reminded of what Captain John Parker told his army at Lexington Green, the place where the War for Independence began in 1775. He said, “Stand your ground. Don’t fire unless fired upon, but if they mean to have a war, let it begin here.

Offline GamblinMan

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Re: Benjamin update
« Reply #20 on: February 22, 2006, 03:24:20 AM »
I've never read y'alls story before tonight.  I just finished reading all of the posts in Ben's Diary, and I have to say, Tamet & Bob, y'all are awesome.  I really look up to y'all.  I hope and pray when the day comes for me to be a mom that I will be half as good as Tamet.  It amazes me that you find the time, strength and energy for everything going on in your lives.  I know God is your Rock, and I pray that he continues to sustain and bless you and your entire family.

Offline Tamet Gould

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Re: Benjamin update
« Reply #21 on: February 22, 2006, 07:12:30 AM »
Whoa, I hope you are better than me.  I feel like (which most moms do Im sure) that time is flying to fast and my oldest is growing up and I am missing all of it.  Joseph is a special young man and has already told us he will be leaving at age 18.  I already miss him and that is a little over 4 yrs from now.  I have a great relationship with him and I hope it doesnt change, but his hormones havent kicked in yet.  I try and prepare him for the outside world and its harshness and I will be doing more and more of that over the next 4 years.  I guess I am blessed because I have him with me practically all the time considering I home school him but darnit, I still already miss him and it makes me almost cry to think he wont be living with us that much longer.  I know it will be a short time because 14 yrs has FLOWN by  <..>

Anyway, to the subject of Benjamin. 

He has had a rough Feb so far.  The first of the month he was plagued with bowel problems and they always flare up behavior issues, violence, stemming, etc.  I have had to cut back his meat consumption to one time a day and am kicking around the thought of taking him off of meat all together.  I dont see how that will be possible considering the rest of the household eats meat and he is a VERY SMART young man and knows we are eating something he isnt. 

Now the good things this month - He has also takin back up with his Dad again.  I must assure you Bob is tickled to death.  Ben is up his rear every chance he gets  rofl .  That is a huge change from the last 5 years.  For 3 yrs (2001-2004) Ben didnt want to have anything to do with him because he was involved in having to prevent Ben from hurting himself or us.  That meant restraining him.  Bob was usually the one doing it.  Last year Ben opened up considerably to Bob but still there were things or times he didnt want to have anything to do with Bob. 

This month he has really turned around when it comes to Bob, if Bob is in the house, Ben grabs him and drags him to the couch and makes him set down with him and hold him.  Bob can take him to the bathroom now and assist him in his restroom routine (Ben was pinching and hitting Bob if he had to take him before).  Bob can wake him up and put him in his own bed without him fighting (hitting and pinching Bob).  Believe me that was an ordeal.  Ben gave me a black eye in 2004 when I had to wake him up and put him in his own bed.  I have talked about it in an earlier post I think. 

Anyway, Ben has decided "Daddy" is the world now.   When they sit down together, they aggrevate each other and wrestle and Bob will read to him at the insistance of Ben.  Oh, that is another thing.  He is starting to select books and then show you what they are about as you read them (making noises or clapping - whatever the books are talking about).   He is repeating more and more words and actually starting to mimick mouth movements to properly form and articulate some of his words.  He is getting so good about requesting you do something for him if he cant, which of course we take advantage of and either get him to say the word or sign the word related to what he wants. 

He is like a flower that you can watch bloom, petals are starting to unfold and they are delicate (mind you there is nothing delicate about Ben he is all muscle and lean) and beautiful.  But it is the perfect analagy for what Ben is going thru right now. 

Well I have to go, gotta start getting ready to go to Jurassic. 

« Last Edit: February 22, 2006, 07:31:01 AM by Tamet Gould »
Aut viam inveniam aut faciam - I will either find a way or make one.  "Can't lives on Won't street."

Let us be reminded of what Captain John Parker told his army at Lexington Green, the place where the War for Independence began in 1775. He said, “Stand your ground. Don’t fire unless fired upon, but if they mean to have a war, let it begin here.