Author Topic: August Update  (Read 6307 times)

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Offline Tamet Gould

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August Update
« on: August 05, 2007, 08:03:51 AM »
If you havent read Julys update make sure you do.   Ben went to the dentist last month and he did SOOOOOOOOOOOO GREATTTTTTTTTTTTTT.   I am so proud of him. 

We finally got the pain problem under control.   He must have had some bowel impaction.   I started pouring the water down him (on top of carrot juice and kefir) 8 oz every hr and that really helped him.   He went back to pooping no less than 3 x's a day.   Yes, for some of you that is probably REALLY a lot  >:D.   But for Ben, who has hypotonia (low muscle tone - affects motility of his entire body, especially his digestive system) it is a great thing.   Now this isnt diarrehea (bet yall think Im weird having this conversation) these are formed stools, soft and lots, remember he has a hearty appetite and it has been medically proven what you eat should come out and he eats several times a day. 

Another interesting development is here in the last week and a half I have moved him back in his room so Joseph could have his room back.   Well, Bob said he would NEVER sleep in there by himself!!!!!  Well, guess what?  For the last week he has not only been sleeping in there by himself but putting himself to bed anywhere in between 9-10pm and sleeping until 8:45 or 9:30.   Dont know whats up with that but am glad to see it.   

Now, here is the really special thing.   God sent us a wonderful angel the other day.   I am not going to put her name here because I dont know that she would want me to.   But, I have to tell you this story.   Bob and I had just been talking the last 2 weeks that we were going to have to reduce his therapy time at Plano in Sept because money will start running thin again and I want to be able to at least take him once a week.   Well, I had gotten an email from a lady about 2 weeks ago asking for my mailing address (I thought oh she is sending me an ad to place online).   So, I sent it to her, thats not uncommon for me to get requests like that.  Well, Thur I get a letter from her and opened it up and would you believe she had sent me $1500 for Ben!!!!!!   I started bawling and called Bob and Jack and several other people and told them how sweet that I thought that was.   Now, let me tell you something, that extended our time by a month to continue to carry Benjamin to Plano 2xs a week.   Bob was really excited too because he just told me yesterday that he knew we were carrying Ben to the right place because even he could see a difference in Ben (not sure whether it was the sleeping in his own room or Bob is able to handle him better or what, but I sure was encouraged to hear that from Bob). 

I am going to have to track down our most recent angel at State show and give her a big ole hug.   Ben has been blessed with LOTS of angels in the last 2yrs and I want each of them to know how much it has helped him.   

As I look back over the last 12 1/2yrs, there has been many angels placed in our path for Ben and as the yrs have gone by I am better able to recognize them.   I thank God for each of them and may He bless each of you. 

So, for Benjamins' most recent angel many many many  (((((((HUGS)))))))) to you from us and thank you so much.   I dont see how you did it but thank you.   
« Last Edit: August 25, 2007, 07:30:43 PM 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 Tamet Gould

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Re: August Update our latest trials
« Reply #1 on: August 25, 2007, 07:29:08 PM »
What a completely humiliating day................................................  Im not going to go into it yet because there are good things that I want to share first and really are more important than the small minded people in the world.

Ben has been going to Plano 2x's a week and some days he does better than others, and over all he is doing really good.   They are able to get through his IEP every day and sometimes 2x's that day.   Bob goes on one day with us and Kelly goes on the other day.  It has helped SSSOOOOOOOOO much that we are all participating.   Ben doesnt really care for us all ganging together  >:D, but that is to bad. 

Here in the last 2 weeks he has started having a problem riding in the truck and going places he doesnt want to go.   He was just screaming bloody murder and drilling, or hitting himself or trying to pinch or hit us when we are in the truck.   We were VERY worried because we are going to Reno in Oct and he is going with us and that is a 4 DAY TRIP.   Of course, the guys at Wayman thought that was really funny, I didnt though (we are all becoming a big extended family), so I asked, "What do we do?".   Gail said just ignore him, act completely like he isnt in the vehicle with you, have a conversation with Kelly or Bob or whoever is in the truck with you as if he wasnt there.   Well I just kinda looked at her like, how is that ever going to work?, and of course my mouth is hanging open attracting flys.  She said, "Im serious, just ignore him like he isnt even in the vehicle".   I stand there for a minute thinking, "How in the hell is that going to work?".   She said, "I mean it, act as if he isnt even in the vehicle and it is just you and another individual."  Then she said, "if it is just you in there, pick up your phone and act like you are talking to someone on it and completely ignore him."  Im thinking, well, everything else she has told me has worked so I guess I will try it.   

Well, you know Ben, of course he is going to put my new found knowledge to test on the way home.   We were on Hwy 67 just getting out of Dallas and he starts in, so I looked at Bob and said, "So, do you want to give this a try?"   He said, "Sure why not, cant do anything else."  So we just started talking, sometimes a little louder than usual just to hear each other over Ben.   Now,  he is screaming in the back seat and we are setting in the front seats just talking away.  Ben starts acting interesting, of course we cant look back at him or acknowledge that he is there so the first thing we notice is that his pitch and tone doesnt esculate.  At about Cedar Hill we get our first quiet spell, so we just keep talking.   Than, Ben starts again, but not with the same vengence as before, but, he doesnt let up until we get to nearly Midilothian and he all of a sudden reaches forward and grabs my shirt sleeve and pulls on it.   Now, mind you Bob and I just keep talking and dont pay any mind to him (Bob swears I looked at him though).   He got quiet for a few minutes then started back again, but not as hard this time.   So, we continue to talk and act as if he wasnt there.   It was pretty funny though, because after we passed Midilothian Bob reaches over and pulls on my shirt sleeve and says, "look at me Im throwing a fit".   It was hillarous, we couldnt get over how it was working.   It took until Alvarado before he completely quieted down.   But, we were amazed.   

Now, he still does it from time to time and we just start having a conversation just as if he isnt in there.   It doesnt take to long and he will get quiet.   Dont underestimate him folks, he is a VERY intellegent young man and will try you ALL the time.   

Another neat thing he is doing, well, kinda neat, because he is using it as an escape also, is that he is coming up to you and telling you he has to go to the bathroom now, he says, "pa eee" and signs it.   Thats cool even if he uses it inappropriately, but that is just a phase, he will learn it correctly soon.  Okay now for the story today.......

We go to Walmart to look for a swing to replace the one that broke because Ben and bob like to hang out on it by the pool.   Ben starts his act before we get there and we just ignore him and continue on as if nothing is wrong (Im mule headed that way).   We get inside and he starts screaming (you cant image the embarresment walking around a packed store with EVERYBODY stopping and looking at the woman walking along with a 12 yr old screaming, hanging on to a cart), he are doing our best to look invisible but Ben he has those good ole Langford lungs.   rofl  So, we decide we have gotten everything essential,  becasue I can assure you the perusing we wantd to do isnt going to happen at this rate.    I told Bob to go ahead and take Ben to the truck and I will check out.   Well, Ben latches ahold of the cart and doesnt want to let go and is still screaming and I am tapping him on the shoulder saying, "Go with Daddy, Go with daddy", so he lets loose of the cart and attacks Bob in the middle of the store, knocking Bobs glasses off and trying to rip his shirt off and Bob is trying to keep Ben from running off and pick up his glasses and Im try to get Ben to settle down and go on with Bob (What a mess!!!!!!!!!! people are looking and they are clueless to what is really going on).   Bob grabs the back of his neck and his left arm and starts pushing him out the store because Ben is fixing to REALLY HAVE A NUCLEAR EXPLOSION!!!!  :!   People are rubber necking them as they head out the store, Bob is still holding him by the back of the neck and holding his left hand and trying to get him around people and prevent Ben from grabbing them (they just dont realize that he will chew them up and spit them out  :! ), and they are just standing there not moving, like deer in the middle of the road with the headlights on them.   Well, Bob has to hold him like that all the way to the truck and as he walks by a car a lady tells him to "go easy on him", Bob told her to mind her own $%$^$ business, because she had no idea what was going on or why it was going on.   So, she spouts back, "well maybe if you didnt act like you are acting he wouldnt act like he is."   Bob is trying to get him in the truck now and the lady wont lay off and Bob screamed at her to mind her own business, she had no idea what was going on.   So, she calls the police and drives off.    Well, guess who was waiting for us down the road.   We were pulled over by not just 1 cop car, but 2 cop cars (guess they thought we were deadly and armed or something)  <IMSOMAD> .     NOW, IM REALLY PISSED..................  I do everything I do and I get treated like a criminal, yes, I know they have no idea what is going on and a lot of that goes on and they have to check, but still, Im pissed. 

So, he wants to see my license and insurance and I look back to check on Ben because Im thinking he is fixing to start screaming again because he is drilling.   I see another cop at his door so I role down Bens window and let the cop look at him, he didnt ask me to, and really I was hoping with the mood Ben was in that he would reach out there and grab him so he could get just a small taste of our life.  I told him to be careful because Ben would grab him, so he kept his distance.   I know that was a horrible thing to think but Im not perfect and I have those thoughts too.   <(::)>   Anyway, the cop on my side asked what was going on, and Bob told him, "Our youngest son is Autistic and he is having trouble today and that lady at Walmart didnt have a clue what was going on.   They could check him, he didnt have a mark on him."   Now, the cop at my window asks his buddy on the other side if his ears were bleeding or anything else looked wrong and his buddy told him no, he looks fine.   Ben just looked at him.    Me, Im wanting seriously to break somebody's nose by now.   HOW DARE SOMEONE ACCUSE US OF HURTING BEN, especially so bad that his ear would bleed.   I have no idea what that #$%#$^$&$%^ told them, but I hope God blesses her with understanding in a very educational way, and that is all I have to say about that!!!!!   <IMSOMAD>

Sorry, about venting, but I finished crying about it and this is just part of the process and the package that I am blessed with.   But, I wanted yall to see the ignorance that I was faced with today.  I dont see why she wasnt intellegent enough to see that Ben has issues that arent normal for a child his age.   <IMSOMAD> <IMSOMAD> <IMSOMAD> <IMSOMAD> <IMSOMAD> <IMSOMAD>

Life goes on, and I still expect a lot from him and I plan on getting it.   We regrouped and decided that the next time that happens we will just drop the items we came for, bundle up and have Joseph lead the way and have people get out of the way or explain that he has autism and this is a therapy session.  The next time I go to Walmart I can assure you it will be with a possee of us (Bob, me, Kelly, Joseph and anyone else we can talk into it) and have them surround us while Ben has a nuclear breakdown and get him over it.   I dont want to put up with the stupidity from someone who doesnt understand.   

Bob called a friend and he said we should just leave him at home and go (not by himself).  But, we cant, that isnt a normal life for him.   He should be able to go and do what we do and that is my goal. 

Thanks for listening, probably shouldnt share this day with yall but I needed to vent. 
« Last Edit: August 25, 2007, 08:13:46 PM by Bob 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 Bob Gould

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Re: August Update
« Reply #2 on: August 25, 2007, 08:12:42 PM »
The Lady screamed Hey ease up on him. If I had though of it I should have pushed him close enough that he could reach her. But at the time I was just trying to keep from getting hurt or letting other people get close enough to get hurt. Saying and screaming are two different thing is she had just said it I couldn't have heard her. Huge difference. I let her have a peice of my mind and that is when she called the police.
« Last Edit: August 26, 2007, 08:03:44 AM by Tamet Gould »
This came to me while chopping wood the other day. You've heard don't sweat the small stuff. I say save it for later and use it for kindling

Offline Gabe's Babe

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Re: August Update
« Reply #3 on: August 25, 2007, 08:40:52 PM »
OH, My. Yall really had one of those days. I am so sorry to hear all that! My prayers are with yall and with the lady who did not understand. I pray that she sees that yall are good people and that she opens her eyes! Anyhow, I know that Ben has his good days and his bad. I just hope that times like these, you reflect back to the good times to help you keep going with him.  (((((((HUGS)))))))) (((((((HUGS)))))))) (((((((HUGS)))))))) (((((((HUGS)))))))) (((((((HUGS))))))))

Offline Tamet Gould

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Re: August Update
« Reply #4 on: August 25, 2007, 09:05:50 PM »
Just talked to my mother and she suggested we carry the diagnosis paper from the Ped Nuerologist with us at all times.   That sounds like a good idea to me after today.
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 Katy Holloway

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Re: August Update
« Reply #5 on: August 25, 2007, 10:07:37 PM »
Crap guys, I just don't have anything intelligent to say.  But, I love you all very much and keep you in my prayers.  You WILL prevail! (((((((HUGS))))))))
Women and cats will do as they please, and men and dogs should relax and get used to the idea!


Be exalted, O God, above the heavens; let Your glory be above all the earth!!
Psalm 57:5

Offline Tamet Gould

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Re: August Update
« Reply #6 on: August 26, 2007, 08:22:52 AM »
Thanks Katy, yes, we will.   Just that bumps in the road like that hurts everybody's back that is on the ride.   :\\(((

I want Ben to lead as normal life as possible, I dont want to put him in a home, but I know that somewhere down the line the situation may arise unless I get the changes necessary done now.   I dont like the thought of my baby having to be given a drug just so he wont hurt someone (because he was never taught the social skills necessary for him to survive in main stream society), or living in a home with others who arent his family or being locked up because of his lack of social skills or not being able to communicate.   I dont want this!!!!!!!!!!   And I see it happen plenty to people like him.   At this point I refuse to go there, and the bridge I am building is pointing in the opposite direction. 
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 Charlotte C

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Re: August Update
« Reply #7 on: August 26, 2007, 12:35:01 PM »
Man guys I am so sorry I wish I could offer any kind of words of encouragement except you know in your heart you are doing the best for him you can.

That Lady can go to hell!!!!!!!!!!  To many noisey people needs to mind their own knitting usually it is more screwed up than the peoples business they are nosing around.

You guys are in my prayers.  I am so sorry and you guys are the best and will be rewarding in heaven trying to help Ben be the best he can be.  I know it is not easy. 
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Offline suedon

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Re: August Update
« Reply #8 on: August 26, 2007, 04:33:52 PM »
I pray that God will give you both strength and keep his hand upon Ben as well.

Offline Abarrelracersmom

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Re: August Update
« Reply #9 on: September 02, 2007, 10:58:23 PM »
 I agree you should carry a copy of the diagnosis paper with you ..but    Some people will never have a clue...they just assume!

  I went thru 2 years of chemo and had a woman remark as I walked into a restaurant.in a very loud voice..."First she parks in a handicapped spot and she looks fine to me and  just look at her hair  ....What kind of hair cut is that and why would anyone cut  her hair that short?"...
 My  daughter who was 8  at the time turned  and  said...." It's called a chemo cut and it's a kind of hair cut that only very special people can have  and my Mom loses her breath  fast and I'm not strong  enough to  carry her  across the parking lot.".. /////     That  shut that ignorant heifer up  fast. 

With the progress Ben is making, You are doing something right.....keep your chin up...

Offline Tamet Gould

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Re: August Update
« Reply #10 on: September 03, 2007, 09:11:48 AM »
Wow, now you have a daughter to be very proud of!!!!!!   :)/\\  That person was VERY OBNOXIOUS!!!!!!
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 Bob Gould

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Re: August Update
« Reply #11 on: September 08, 2007, 12:12:49 AM »
Ben has gone from not wanting to be around me to wanting me there every second. A blessing in one way but it makes it hard to get anything done
This came to me while chopping wood the other day. You've heard don't sweat the small stuff. I say save it for later and use it for kindling

Offline Katy Holloway

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Re: August Update
« Reply #12 on: September 08, 2007, 04:38:08 PM »
Bob, gives new meaning to the saying "darned if you do and darned if you don't!" (hi there)
Women and cats will do as they please, and men and dogs should relax and get used to the idea!


Be exalted, O God, above the heavens; let Your glory be above all the earth!!
Psalm 57:5

Offline Tamet Gould

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Re: August Update
« Reply #13 on: September 08, 2007, 05:13:40 PM »
Yes, I know it is irritating to me to, because as soon as Bob walks out of the room Ben either wants to go to the bathroom or outside instead of setting quietly.   So, now he is using "going to the restroom" as an escape which we cant allow but you have to know his potty schedule so you can determine if he really needs to go or is just trying to get out of setting down.   Then if you dont at least follow him to the bathroom he will undress and get in the tub.   So, in reality life with Ben is a darn if you do and darn if you dont.    :!  >:D
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.