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Author Topic: Living with Ben is no bed of roses  (Read 8416 times)

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Offline Bob Gould

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Living with Ben is no bed of roses
« on: February 13, 2006, 10:49:31 AM »
I was talking to my daughter the other day and she was telling me she had a friend who was reading about how great things are going with Ben and wished it was with her son too. Maybe I worded the subject wrong Living with Ben is like living in a bed of roses. Most of the time it is great the sweet smell of roses but a lot of times painful like a thorn. There has been a few days in the past month that Ben hasn't slept much he can still get really mad but no where like before. The changing of Ben's diet has Made big difference in his life. Sometimes I feel sorry for him because he can't eat cake cookies or chips which he has alway loved. AT first I had the feeling of being a bad father for not letting him have them but to see the difference after he eats them I know it is best. Ben still has a temper just the other day he was laying in bed with us and Tamet told him to go to bed and before I knew it he reached over and pinched the crap out of me so hard that it bruised right then. Even now it is a bruise that is bigger than a silver dollar after almost 2 weeks. Yesterday Tamet told him to go to the bathroom and he got really mad and tried to pinch choke and hit Joseph but I pulled him off and we left him on the bed crying for a few minutes. For Ben hitting him on the back settles him down so while I he was layed over I started hitting him on the back. I saying hitting but it is kind of like patting but harder. When Ben was young he had pneumonia a lot and to break it up We were told to cup our hands and hit him firmly on the back to loosen it up and Ben has always liked it.
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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 Tysh

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Re: Living with Ben is no bed of roses
« Reply #1 on: February 13, 2006, 10:58:46 AM »
you guys are so wonderful!!!!!!!!    I cry everytime I think of how much love you have for Ben... That love for a child is so HUGE!!!!!!!!!!!!!!!!!!and we do anything for our babies.   Being a mom of a wonderful 4 yr old boy.... I appreciate everything you do for Ben...  and I love you two for loving him so much!

Thanks for sharing the good and the bad.....  God bless you all....
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Offline Bob Gould

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Re: Living with Ben is no bed of roses
« Reply #2 on: February 13, 2006, 10:59:46 AM »
We have taken Ben  of all dairy all wheat and corn products. We have been told by a Doctor that we are bad parents because we didn't give them to Ben. On that day we went to McDonalds and got Ben some pancakes and before we got out the door he was screaming. So no matter what a Doctor says we will do what we know is best for Ben. Not only for his well being but for our too.

When he was sick he would get up in the middle of the night and we would wake up with him pounding on us. At that time all I could think of was how am I going to keep this boy under control at 16. I could imagine Ben killing us in our sleep. There was times I would have to hold have to hold him down by wraping my legs around his and holding his arms and at 8 years old it would take all my strength. If we didn't he would throw himself on the ground and hurt himself or attack one of us.
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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 Tysh

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Re: Living with Ben is no bed of roses
« Reply #3 on: February 13, 2006, 11:02:56 AM »
so when he eats something that he is "allergic" to... i guess you start seeing symptoms with in minutes?   That is so scary.   I pray the medical world will find some cure for this......  something he can take to stablize all this...

May God give the doctors the knowledge!!!!!!!!!!
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Offline Bob Gould

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Re: Living with Ben is no bed of roses
« Reply #4 on: February 13, 2006, 11:07:14 AM »
I am not putting this here because I want anyone to feel sorry for us but there has been a few people who think all is great and there are no more problems. I just want them to be aware we still have troubles and not to give up  as long as they are doing everything they can includes going to a different doctor if the one they are going to is not helping. With the help of Destry and Corky we are starting Beyond Ben which we hope will help others who can get the kind of help Ben has so don't give up no matter what the doctors says there is always hope.
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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 Bob Gould

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Re: Living with Ben is no bed of roses
« Reply #5 on: February 13, 2006, 11:23:20 AM »
Quote from: Tysh on February 13, 2006, 11:02:56 AM
so when he eats something that he is "allergic" to... i guess you start seeing symptoms with in minutes?   That is so scary.   I pray the medical world will find some cure for this......  something he can take to stablize all this...

May God give the doctors the knowledge!!!!!!!!!!
Yes we see it in minutes and he has gone to an allergist and he said he is not allergic to anything and we are bad parents for not giving these things to him
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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 Tysh

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Re: Living with Ben is no bed of roses
« Reply #6 on: February 13, 2006, 11:41:53 AM »
I wish they could see what happens to him!!!!!!!!!  UGH!    YOu are not bad parents!  YOU ARE NOT BAD PARENTS!!!!!   Don't ever let any one make you believe otherwise!   You two are amazing.. and Ben is blesssed  by the Lord to have such wonderful parents.   I can't imaine how bad you could feel when Ben can't have this or that.  But it's the way it has to be.  YOU ARE NOT BAD PARENTS!!!!!!   Just incase you needed that.  ha ha

Besides, so what if he can't have junk food... none of them need it anyway!   
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Offline Bob Gould

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Re: Living with Ben is no bed of roses
« Reply #7 on: February 13, 2006, 11:45:21 AM »
I'm kind of the same way I just wish that a few of these doctors could see what happens when he eats it. They would change their mind. This doctor was telling us he has to have things like milk wheat and corn. Any of those things will set him off and turn him into a raging monster.
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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 Tysh

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Re: Living with Ben is no bed of roses
« Reply #8 on: February 13, 2006, 12:06:10 PM »
Plus if you think of it.. There are lots of kids that won't eat or drink that stuff at all. and they are just fine..   One day they will understand.   With all that you are doing.. I am sure there are more families with children out there with this same problem.  only they haven't had this brought to their attention... and soon they will come across Ben... and some SMART doctor will put two and two together and believe you!! ha ha   In time..  be patient.. This has to be the hardest of situations to be patient.   But trust in God... I know you do.    It's going to be okay!  This I pray!
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Offline Bob Gould

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Re: Living with Ben is no bed of roses
« Reply #9 on: February 13, 2006, 12:13:12 PM »
I know that things will be OK. I don't think Ben will ever be normal but I want him to be as normal as possible. That means taking him to people that are considered to be quacks by the Medical Proffession. The only reason I am posting this at all is because my daughter told me someone has been reading about Ben and thinks everything is perfect. It's not but it is easier because of folks like Pam Cantwell, Bobby Barter, Corky Barter and Destry Fleming
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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 Tysh

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Re: Living with Ben is no bed of roses
« Reply #10 on: February 13, 2006, 12:35:21 PM »
Well I for one never thought it was smooth sailing for you guys.    I see all that you put in it.. and I am amazed.   So many would have already given up.   

Thanks to every one that has given and contributed to Ben!!   He has a good life..  just b/c yall love him!   The rest might be hard most of the time, but he knows how much yall care for him.  And that is all that matters!
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