Author Topic: Benjamin update  (Read 13227 times)

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Offline Tamet Gould

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Benjamin update
« on: September 10, 2005, 08:38:50 AM »


Well its been 2 weeks since I updated so thought I better let ya’ll know what is going on. Benjamin is doing great. His vision is improving more every day. When we go somewhere now he looks at everything, displays, walls, ceilings, the people wandering around. Its like he is seeing it for the first time. He will nearly break his neck to see a tractor while we are going down the road. We were in Taco Bell yesterday and they have a display over the cash register that has a picture of the carmel apple empenada. As we were ordering our food he reached across the counter and tried to take a bit out of it. It was so funny. I know you might think it was strange but we were very excited because that tells us he understood what that was, and he wanted it, he just didnt understand that he couldnt eat it. He knew it was food, he understood or recognized a picture. until the last few weeks he has never been interested in pictures of any type and we werent sure he knew what things were when you showed them to him. That just confirmed he understood what that picture was - food!!!!!

Anyway, update on his 4 wheeler; we got spooked when the last one went out because for 2 days, he didnt want out of the house, he didnt want to do anything, he was lethargic, not very verbal or anything. We took him over to Zack Thompson house (he lives about 4 miles from us) and put him on their gator. It was so funny because he just ‘woke up’. He got excited again, started being verbal (we dont understand everything he says) and started playing again and aggrevating everyone, cats and dogs included. So, we went on the hunt for another 4 wheeler (we are currently waiting for some friends to get a gas powered one they have going). We bought a power wheels this time but it honestly looks cheaper made than the peg pergo ones we bought before. He will ride it until it quits though. Dont expect it to last much longer than a couple of weeks.

Benjamin is getting quicker about doing things you request of him. He is constantly coming up with new words, using more consanants, but our goal is to have his language so everyone can understand him. He is communicating his desires and needs more, if he cant tell us we make him show us by pulling us over to it or dragging us to it. He is learning more and more that we are understanding what he is wanting and that is making him want to communicate even more. He is so smart and we are so excited that it is becoming obvious now.

Many of you were at Bobby Barters race in Waco on Labor Day weekend, it was awesome. Bobby and the Barrel Racers raised enough that we will be able to get some therapies that will help Benjamin organize his Central Nervous System better. We have a long road to travel to recover his abilities but it is a road we can see now.

I was telling Kelly (young woman that helps me with Ben during the week) that when Benjamin starts talking really well and can carry on a conversation with people, the first thing I am going to do is make an appointment with his last neurologist and let him know that he needs to change professions, because he doesnt know what the hell he is doing and he doesnt need to be destroying other families lives. (I wont go off in the subject because you would be reading for days).

Benjamin is doing great and getting better each day. We are very excited. We go next tues to see Dr Stewart for the second time. I am anxious to see if the tests will show the improvement in his ear hair growth. I dont know how much growth has been acheived but some obviously has because Benjamin is capable of things he wasnt capable of 2 months ago. Im sure the viral load in his body has reduced some as well as the Candida, he is mildly elevated in heavy metals and we are in the process of finding where the culprits are coming from; water, food, environment etc. I am switching to cooking ware that is either glass or porcilan (sp?), making sure it is cadmium and lead free. We are going to have to make sure that all vegs (he eats so much fresh) are cleaned really good to remove pesticides and toxins and have our water tested. We may ultimately have to put a filter on all water coming into the house to prevent exposure even during baths to the toxins. I will know more after the water is tested.

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 #1 on: October 07, 2005, 10:42:52 PM »
Any new updates?????
If God brings you to it, He will bring you through it.

Offline Tamet Gould

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Re: Benjamin update
« Reply #2 on: October 09, 2005, 09:27:09 AM »
Yes, there is Mandi.  As some of you saw at ANHA, Ben is doing Very good.  Dr Stewart (Austin, Tx) put him on a Alzheimer's vitamin called Metanx.  One of the key problems with children like Ben is they are loaded down with a viral load, heavy metal load, and yeast load, each essentially feeding the other by desrupting the natural process of vitamins, enzymes, proteins etc, starting in the gut.  Some of the most common disruptions occurs in the break down of Folate, B6 and B12 (xtremely important components!!!).  Important to what you ask?  Important to the nuero transmitters associated with Brain function and 92 million other functions.  I wont even go into the chemical side of all this, but essentially the folate, B6, and B12 that has already been methylated and broken down so the body (brain as end result) can have immediate access to these 3 key components. 

Within 2 days of starting this simple vitamin Benjamin would just go do what you ask him to without hesitation.  It was unreal to see.  We were dumbfounded.  It was awesome.  He responds quicker and understands more (evident by doing what you ask him to do almost instantly)  He is even more aware of what is around him.  You would have to have know him 6 months ago to truly understand the change. 

Dr Stewart did his usual testing (which I can assure you is not usual anywhere else).  To learn a little more about his specific testing go to http://www.sensoryview.com/ (it is a website promoting his software so overlook the promotion and go for the meat of the problems which are discussed some).  Benjamins tests showed MARKED IMPROVEMENT that went along with what we have been seeing.  Instead of his balance parameters being scattered all over the chart, they are beginning to cluster up and we are reaping the benefits from the cluster. 

Benjamin still has huge holes in his tempanic membrane but Dr Stewart doesnt want to have them fixed until he can get his viral load down more and have the body rid itself of more of the chicken pox virus that is killing the inner ear hair of the inner ear (the important ones that establish balance in the vestibular system).

We are keeping him on his current Valtrex dosage and wont start reducing it until Jan of next year.  Dr Stewart assured Bob that there was nothing wrong with Benjamin's brain other that information wasnt being fed to it so it could respond correctly.  He apologized to us that it was going to take so long (another 9-12 months), for the life of me I dont understand that, we have been clawing our way through this for over 10 yrs now and FINALLY ARE SEEING SOME LIGHT AT THE END OF THE TUNNEL, OH, WHICH BY THE WAY, WE CAN SEE THE END OF THE TUNNEL. 

Benjamins cognitivity is improving, with this we will then start the long and arduous process of helping him recover information that he should have gotten as a small baby and on.  But, Dr Stewart wants us to wait until at least Jan before we start hitting the therapy trail until we can beat down more of the virus load Benjamin is carrying around. 

I trust this man more than any physician I have ever been to with Benjamin and I can assure you there isnt enough appendages in my house to count the # of Midevil Dumasses (M.D.'s) that I have taken him to.  Folks its all about finding the right individual with the right information to make things work. 

He answers all my questions and then wants to make sure I understand what he just explained.  He is reassuring and cares about what happens to people. 

If you have a child with medical problems and you cant find an answer, go to him.  Dr Kendal Stewart 6836 Bee Caves Rd, Suite 300 Austin, Tx. 78746  512-338-9840.  Dont waste another minute of your childs valueable time.  Because the older they are the harder it is to recover them.

PS - here is a quick scale of things Benjamin has accomplished over past 4 months;
Benjamins is looking at things, tracting things with his eyes at high speeds, going down the road in the truck.  (He almost broke his neck looking at a tractor the other day)  >:D

Benjamin is starting to follow directions with just telling him one time.   

Benjamin is understanding things better.  How do I know you ask?  He is starting to try to help do things in the kitchen.  He will go to the frig, get out his peaches, take them to the cabinet and take the lid off the top of the blender and get a spoon and pound on the blender and try to push buttons.  When you ask him what he wants, he says "ice cream"  mind you it is like a deaf person speaks, his articulation is horrible but who the hell cares right now!!!!!  He is doing sequencing of an act, that is extremely important in the scope of things, because sequencing comes before speech as you and I know it.  We are seeing him take baby steps in the scope of development just as a 1 to 2 yr old would do.  (something I never thought I would see)  And, to top that off I know many of you have seen your kids do things and wondered, how did they learn to do that.  Well, they learned by watching.  Benjamin can see better, so he is acquiring that ability also. 

Anyway, sometimes you just have to see it to believe it, but thought I would give all you "hard core"  show me the results folks some meat to chew on.
« Last Edit: October 09, 2005, 09:41:08 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.

Offline Mandi

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Re: Benjamin update
« Reply #3 on: October 10, 2005, 09:08:24 PM »
I know I wasn't around Ben prior to him going to see Dr.Stewart, but just knowing what everyone has gone through and the great results that are coming now, its easy to understand that real 'glow' I saw on Tamet and Bob's face when Ben was yelling "GO" at the tractor when I got to sit and visit with them at Waco.

Thank God for the doctors that are out there like Dr. Stewart.
If God brings you to it, He will bring you through it.

Offline Pam Cantwell

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Re: Benjamin update
« Reply #4 on: November 07, 2005, 11:51:34 AM »
Tamet.......anything new with Ben? How is he doing?  <(' ')>
“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 #5 on: November 07, 2005, 01:38:43 PM »
Let me rest today, we are allllllll exhausted from the Halloween show then the Winmore Finale.  There has been some really cool changes though and I will catch everyone up on them this week. 
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 Tamet Gould

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Re: Benjamin update
« Reply #6 on: November 18, 2005, 09:03:46 AM »
Whew, finally feel human again, so thought I would update yall on some new stuff with Ben. 

In the last 2 weeks Benjamin has started engaging  people to interact with him.  In other words when the neighbor boy comes over Benjamin wants him to "Be Heal" him.  He is wanting to be in the room with them while they are playing our out on the trampoline with all of them while they are playing.  When other kids are here Ben is tugging on there shirt sleeves and trying to get them to "Be Heal" him or telling them to move or putting his foot in their lap wanting them to tell him to "get your foot off me boy!"  (dont know why he thinks that is so funny, guess it is the facial expressions we use when we do it  >:D ).  He is just wanting to communicate more and more.  Pushing and pulling you to do something, actually going into the bathroom more by himself (normally after he has already done it in his pants) but hey folks, that is HUGE because that tells us he is starting to understand that is where you go.  So, hopefully we can start pulling all the steps together for him to do it completely by himself!!!!!

Just this week, he pulled out some toys (thats a big one) that he has never shown any interest in and has been playing with them for 3 days now, appropriately. 

I am flying to Arizona next week (thanks to Randy and Larry of the American West 4D for letting me use his built up miles) to attend a 3 day seminar on Verbal Behavior and hopefully when I get home I will be able to implement all the things I learn.  Because just using what little I do know about the technique is how we got Ben to start using words at all.  I have Big hopes for that seminar and if it doesnt pan out for me to learn as much as I need I am going to have to look at either Austin, Tx for therapy or go to California to get what we need for Benjamin.

Benjamin has the capability to move even further along and I want to provide him the avenue to do it.  My goal is for him to be speaking in sentences by the end of 2006, they may be short, 2-4 word sentences but that is a BIG STEP, because most folks dont realize the cognitive skills needed to do that.  Benjamin is an extremely smart young man and we have got to get him the help he needs to show us what we already know. 

He has developed a rash kinda on his forhead and around his nose and Dr Stewart is putting him on Diflucan (sp), because he thinks since Benjamin is on a low level chelation therapy it might be setting off a yeast reaction, which tells us that the chelation is working.  We will see, I have to go pick up the meds today. 

Anyway, in general the last 3 weeks Benjamin has become more communicative, wants people to interact with him, talk to him, read to him etc and he is initiating those opportunities.  Very big for a little boy in his own world.  Gotta go, help called in sick today so it is just us of the Gould clan.   <ROCKON>

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 Pam Cantwell

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Re: Benjamin update
« Reply #7 on: November 22, 2005, 11:33:16 AM »
Every single improvement is a blessing!
“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 #8 on: November 24, 2005, 04:35:51 PM »
November 24th, Thanksgiving update.  Went to my Aunts and Uncles today.  We didnt know how Benjamin would do with all those people in such a small space.  HE DID GREAT.   He was watching and listening to everyone, he was crawling up into my cousins lap (mind you he was a college football player, so he isnt a small man), Benjamin was hugging on him, wanting him to be heal him and hit on his belly and his back, then he was giving him sugar.  They were amazed at how friendly he was and how he wanted to interact with everyone.  Then he crawled into my other cousins husbands lap and messed with him for a while.  He was so good and attentative to his surroundings.  Im shooting for him to be talking to them by this time next year.   <ROCKON> <ROCKON> <ROCKON>

Anyway, something else that has come on this week is Benjamin has been getting on his therapy PT ball, huge ball he can sit and bounce on, and playing with it vestibularly.  He will roll it forward when he is setting on it, all the way to the point where he is laying on it on his back, then roll it back so that he is setting up, then he will roll it side to side while he is setting on it, mind you this is being done with the trunk on his body and then he will right himself so naturally.  He Sensory reactions are getting so much quicker.  It is so cool to be able to watch him do the things I can do on it.   <ROCKON> <ROCKON>

So, to us, this is truly a day of Thanksgiving and the light at the end of that tunnell is getting bigger and stronger, wont be long until he explodes thru that tunnell into a whole new world.  I look forward each day to watching this miracle take shape. 
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 Pam Cantwell

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Re: Benjamin update
« Reply #9 on: December 07, 2005, 12:41:32 AM »
That is WAY cool Tamet!! Can't wait to hear about your trip to Az. and all the things you learned!
“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 #10 on: December 07, 2005, 07:35:39 AM »
December 7, 2005
Ok, I will try to explain some of the things I learned.  One of the truly important things I learned was that verbal behavior is more than language.  Verbal behavior is pointing, signing, leading you to something (something they want), or babbling and using one of the other tools to get what they want. 

Now here is the big one, the one that floored me.  Language is not some cognitive being, not something based on their intelligence, not based on anything other than movement.  Huh, you ask, me toooooo.   <DUMMY ME>  I have heard that philosophy for 10 plus years!!!    <..>  This was an epiphany for me.    <NOT WORTHY>  But, it gave me such hope for Benjamin that is almost makes me cry to set here and write it.   8)

Language in its simplest form is mere movement, which creates a stimulus, which is then tied/paried to a reinforcer.    Hang on, I am explaining, do you know how hard this is for me to explain this without being able to move my hands (other than to type)?  Ex:  A tiny baby screams (did anyone teach him to scream?????  Think about that!), it is muscle movement which then stimulates, the sensory system, mommy comes running, picks him up, and talks to him in a calming voice (reinforcer that is now paired with that stimulus).  Hmmmm,  lets see, if I dont like something in my environment, I scream, it produces all sorts of things that are exciting in my body and here comes this big thing that picks me up and makes me feel better.  Wow, that was cool, let me do that again.....   Get the picture?  How simple is that? 

What has happened to children that cant talk or sign or any of the other mirade of things is that they missed the stimulus that accompanies the movement and that is then tied to the reinforcer.  Because let me tell you, once the stimulus starts then the desire for more of it is next and it makes the muscles stronger and then the natural things fall into place like; they want their muscles to move so that they sound just like everyone around them, that is called paridy (not sure on the spelling on that one).   Cool huh?  I saw dozens (not stretching that either) of emperical evidence, VIDEO, of children he has treated (I can assure you I wouldnt have wanted to be in the shoes of some of those parents) from just a few months old to 16 years old. 

Dr Carbonne, says he can get any child with problems, functionality.  Some, will get more than others, but he wants all of them to have as much functionality as they can have.  That is his goal.   AND HE IS VERY GOOD AT ACCOMPLISHING IT. 

So, my quest is to find someone that has done their residency under him here in Texas.  If I cant find what I want and someone I am impressed with, then New York here we come :)/\\

I have already been experiementing with Benjamin since I got home and I believe I have quit a few advantages and some disadvantages to work with.  But, most important I have to get to a professional so they can teach all of us what we need to do for Benjamin.    He wants to communicate with us so bad, I never saw it before, but it is there and now I can see it.  So, I take advantage of every situation I can with him and he is having a blast with it.  Sometimes, he does it right and the look on his face when we reinforce that movement is a glow.  You, would have to be here to see it. 

Anyway, I have nine tons of webwork to catch up on (still), so I better go. 

Oh, and Pam we will probably be heading your way for that therapy, I think I have found a lady in Austin, that works great since Bens Dr is down there already.  Oh, and our next appointment with Dr Stewart is Jan 2, 2006.  Boy, it is going to be a great year in our house, we are getting our little boy back and his big brother is getting his little brother. 

« Last Edit: December 07, 2005, 07:39:24 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.

Offline Pam Cantwell

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Re: Benjamin update
« Reply #11 on: December 07, 2005, 09:32:16 AM »
That sounds great Tamet!! Let us know some of the small details of change that you see when you are communicating with Ben now. (If you have time).

I got what you were trying to describe although I know there is a lot more that is crammed in your brain! I'll bet you were soaking it ALL in!!

Off topic but when you were trying to explain everything on here it reminded me of one of my college prof. that told us to write a 500 word paper describing the "feel of smooth glass". Try that!!


Hope to see you Jan 2!
“When the government fears the people, you have liberty.  When the people fear the government, you have tyranny.”  ~Thomas Jefferson.

Offline ITDASH

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Re: Benjamin update
« Reply #12 on: December 08, 2005, 03:03:51 PM »
WOW    KEPP UP THE GREAT WORK !!!!!!!
:P   Lisa Downs   :P
TEXAS  God Bless Texas TEXAS

Offline Tamet Gould

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Re: Benjamin update
« Reply #13 on: January 01, 2006, 07:14:49 PM »
Happy New Year everyone!!!!  I decided to update today because we go see Dr Stewart tomorrow and Benjamin has started doing all sorts of things.   

Remember in November when I was telling you about Benjamin get on his PT ball?  Well let me tell you he has gotten so good at balancing on it that he can bounce on it with his feet off the floor and stay on it, hell, Bob nor I can do that, and we have both tried  >:D

Around the middle of December Benjamin decided that he could set at ANY chair at the table.  THAT IS HUGE  :yes: .  He used to scream like a banshee when you tried to get him to set in a different chair at the table.  Then all of a sudden in Dec he walks around to the end of the table pulls the chair out and sits down.  We just all stood and looked at him dumbfounded (yes, I know, some of you think I look that way all the time  >PEACE< ). 

With the things I have learned at Az I have got him Manding a whole lot more.  I go to the 2nd seminar this month, the 24-26 in Plano.  Cant wait for that one because they teach you technique and there are only 25 of us in the class so it will be very intensive. 

We also went up to Plano to meet with Gail Wayman of Wayman learning center.  She studied under Dr Carbone and we toured the clinic and observed several of the children in therapy.  So, we are going to do an assessment and consult and they are going to set up a home program for him for us to carry out. 

Benjamin is just understanding so much more of what we are saying to him.  How do I know?  Because when I tell him to do something; put his plate in the sink, go potty, go by by, sit down, etc., he does it.  Where before he wouldnt, he had no idea what you were talking about. 

I had gone to bed early the other night and Benjamin got up off the couch not long after I went to bed and headed to our bedroom.  Bob told him, 'Ben if you are wanting to go to bed, go get in your bed."  Benjamin turned right around and went and got in his bed.  Bob, didnt repeat himself, didnt get up and physically turn him around, he just told him to and Benjamin did it. 

Oh, and this is sooooo funny.  The other evening Ben was bouncing REALLY high on the PT ball and it moved out from under him and he fell flat on the floor.  I just looked and him and tried really hard not to burst out laughing and he sat there for about 5 seconds and went "OOOOPPPS"!  I like to have fell out of the chair laughing.  I told him, Yup that was definitely an OOOOPPPS..  He just laughed and smiled and got back on the ball and started bouncing again. 

He is just doing so good, he is a WHOLE lot more tolerant of his enviroment.  Just ask anyone that has seen him in the last 3-4 months, he is really becoming a different child.  He is really evolving into a more understanding person.   

Well got to run and get some stuff done before we head out tomorrow.  I will let everyone know how things go tomorrow on the way home. 
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 Tamet Gould

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Re: Benjamin update
« Reply #14 on: January 02, 2006, 07:14:03 PM »
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).
« Last Edit: January 03, 2006, 10:46:11 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.