Re: Re: Lou Here........................................

[Guest guest]

MARY LOU,

WE AGREE WITH BRUCE 100%, THIS IS A SAFE PLACE AND OUR EXPERIENCES RESONATE WITH EACH OTHER. GOOD OR BAD, WE ARE HERE FOR EACH OTHER.

 JOE & JOANIE

JOE-IPF 1/08

GRIFFIN, GA.

THERE ARE 2 WAYS TO LIVE YOUR LIFE...ONE WAY IS IF NOTHING IS A MIRACLE & THE OTHER WAY IS IF EVERYTHING IS A MIRACLE!

-- Re: Lou Here........................................

LouFirst no apologies for sharing....ever. We're here for that and, yes, itmeans sharing of joy and of pain.Now to your good day.....thats so great. Thats the key. Nothing wrongabout any of us getting down. The key is getting back up and goingforward and your description of your day is the perfect example.>> First of all, I know we ALL have had our heartaches with our children> in one way or another, but this is the Holiday Season for every one> of us in one way or another. I AM TRULLY SORRY for the things I> shared, guess somehow I was not thinking straight and should have> known much much better. Never thinking that what I said might> trigger someone else's pain.>> I do apologize but I only was spilling out what I should have kept in> my heart. I have always learned the hard way.>> So now on with the new right? The words: "Persistent Fighter" were> made to be mine for a reason I guess. Yesterday was one of the best> days I have had in months. Earl and I went for my pre-op physical,> it was perfect, then we went on to W/mart, we just looked around for> about an hour or so, got some things we needed then came home and I> made dinner. I did all that and I had so much energy, it was> amazing. Today and until they are all gone, I am using all the> compressed oxy. tanks up because they are old "E tanks" and so I can> order fresh ones tomorrow. Am trying to cut down on the electric bill.>> I see there are quite few new members and I feel joy that they have> come to our group. I wish them also a Blessed Holiday Season.>> I guess I'm back !!!!!!>>> I LOVE YOU THIS DAY> MARY LOU - RICHMOND VA> IPF - 02>

[Guest guest]

GINA,

BLESS YOU! I KNOW THE PURPOSE OF THIS BOARD IS NOT TO VENT OUR PROBLEMS BUT I STILL SAY WE ALL HAVE MORE IN COMMON THAN PF. THANK YOU,

JOANIE

-- Re: Lou Here........................................

Now Lou... you listen HARD to Bruce's words.. I totally agree.....you showed such TRUST in us by sharing your grief for your son!

We can only respond by being worthy of that trust.... that may well be by opening up about our own private sorrows!

Something I've hidden from view is that I have grave fears for the adult future of my beautiful 9 year old grandson.... he's such a sensitive little soul but defends himself by being aggressive & NAUGHTY! He's so dashed smart but is having terrible trouble getting his reading together... he's just been assessed as having Erlin's Syndrome... all the letters he looks at appear 'jumbled' & jump up & down on the page. He's just not coping well at school right now & his mother & I are both concerned that he's showing signs of Asperger's Syndrome (something we dare not SPEAK to his father who'd FREAK!). The school's remedial reading teacher's response is that 'we don't suscribe to that syndrome, we think he's just LAZY!' Needless to say he's pulling every stunt known to man to avoid school right now!

One on one he's a Joy... stick him in a group...NIGHTMARE.....he is exceptionally artistic, musical & scientifically & mathematically bright BUT Reading... SPEAKING to make himself heard & understood & sorting out the playground rough n' tumble are beyond him! He's also really NASTY to his little sister when his mates are around...she loves him to bits & gets really upset at the treatment he dishes out to her. He's a total conundrum!

My daughter is taking him to Martial Arts sessions which she also does to try & help him channel his defensive aggression. The teachers there are really great with trying to support kids get on top of their negativity & become more willing & co-operative at home. Time will tell on that score!

Of course running at the back of my mind is that Max really reminds me of my older brother, , who is now a wreck of a man... alcoholic, anorexic, bi-polar & ANGRY at his fate! I love my brother very deeply but I can do nothing to change anything.. looking back I can see how it all played out but not attended to.

With Max we KNOW that something needs to help him NOW or he's going to have terrible trouble becoming a fully fledged adult. I don't think I can bear to watch my grandson go through his adolsecence let alone on into adulthood! KNOWING just makes us all feel awfully responsible for his outcomes!

Here is MY TRUTH.. I DON"T want to still be around then! I guess that shows I don't have a lot of trust that it will turn out OK..... my family has such a lot of poor Mental Health History that genes are not on our side. I also have a younger brother with diagnosed Obsessive Complusive Disorder/ High Functioning Aspergers & many other Aunts/ Uncles/ Cousins with various problems. That's just OUR side of the family....

THERE'S NO NEED FOR ANYONE TO RESPOND TO THIS.... it's just a statement of MY reality..........

From a not-being -scilly

in Oz

> >> > First of all, I know we ALL have had our heartaches with our children> > in one way or another, but this is the Holiday Season for every one> > of us in one way or another. I AM TRULLY SORRY for the things I> > shared, guess somehow I was not thinking straight and should have> > known much much better. Never thinking that what I said might> > trigger someone else's pain.> >> > I do apologize but I only was spilling out what I should have kept in> > my heart. I have always learned the hard way.> >> > So now on with the new right? The words: "Persistent Fighter" were> > made to be mine for a reason I guess. Yesterday was one of the best> > days I have had in months. Earl and I went for my pre-op physical,> > it was perfect, then we went on to W/mart, we just looked around for> > about an hour or so, got some things we needed then came home and I> > made dinner. I did all that and I had so much energy, it was> > amazing. Today and until they are all gone, I am using all the> > compressed oxy. tanks up because they are old "E tanks" and so I can> > order fresh ones tomorrow. Am trying to cut down on the electric bill.> >> > I see there are quite few new members and I feel joy that they have> > come to our group. I wish them also a Blessed Holiday Season.> >> > I guess I'm back !!!!!!> >> >> > I LOVE YOU THIS DAY> > MARY LOU - RICHMOND VA> > IPF - 02> >>

[Guest guest]

I believe your scillyness helps you cope with all of this.

when i started tutoring, one of my first clients had recently been diagnosed with Aspergers. I never heard of it before, but went to the internet to do my research so i could learn how to work with the child. With the diagnosis, his parents decided to Home School him. I went to the house a couple of times a week and met with both the child and his mother. She taught me a lot about what she was learning about Aspergers and about her child. Eventually they did find a private school that they thought would be appropriate for him and that was the last i heard of him.

This child was already in 6th grade when the diagnosis was made. Went through a lot prior to diagnosis. All sorts of problems. Fortunately for this family, they were financially able to pursue appropiate resources to help the child.

There are no "lazy" children when it comes to reading. There are all different kinds of obstacles inteferring with a child's ability to read. I believe "dyslexia" is an umbrella term for all sorts of reading problems. That is my personal opinion. Compare it to IDL and PF, IPF and the rest of the alphabet soup regarding our diseases.

There are various learning disabilties. I used to substitute at a private school that specialized in teaching children with reading disabilities. Grades K-8. They had about 15 children in a class with 2 teachers in each class. The reading classes were very small, 2 to 6 children in a group.

The science class was amazing--lots of hands on activities. The children loved it, but hated when then had to read for science. They did learn alot. There are so many different forms of learning.

I could go on and on but I will stop here. Hope your family is able to find appropriate evaluations and resources for your grandson.

I wonder if what you said about martial arts and your grandson's aggressiveness has something to do with why my daughter takes my grandson to Karate. They live about 1,000 miles from here, so i don't get to see them on a regular basis and am not as involved in their lives as i would like to be. He just started first grade and is already complaining about reading because of his difficulty with handwriting. The teachers have been giving a hard time. She looked at a private school, but it is too expensive for them at this time. They did hire a tutor.

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: Re: Lou Here........................................To: Breathe-Support Date: Wednesday, December 10, 2008, 8:56 PM

Now Lou... you listen HARD to Bruce's words.. I totally agree.....you showed such TRUST in us by sharing your grief for your son!

We can only respond by being worthy of that trust.... that may well be by opening up about our own private sorrows!

Something I've hidden from view is that I have grave fears for the adult future of my beautiful 9 year old grandson.... he's such a sensitive little soul but defends himself by being aggressive & NAUGHTY! He's so dashed smart but is having terrible trouble getting his reading together... he's just been assessed as having Erlin's Syndrome... all the letters he looks at appear 'jumbled' & jump up & down on the page. He's just not coping well at school right now & his mother & I are both concerned that he's showing signs of Asperger's Syndrome (something we dare not SPEAK to his father who'd FREAK!). The school's remedial reading teacher's response is that 'we don't suscribe to that syndrome, we think he's just LAZY!' Needless to say he's pulling every stunt known to man to avoid school right now!

One on one he's a Joy... stick him in a group...NIGHTMARE. ....he is exceptionally artistic, musical & scientifically & mathematically bright BUT Reading... SPEAKING to make himself heard & understood & sorting out the playground rough n' tumble are beyond him! He's also really NASTY to his little sister when his mates are around...she loves him to bits & gets really upset at the treatment he dishes out to her. He's a total conundrum!

My daughter is taking him to Martial Arts sessions which she also does to try & help him channel his defensive aggression. The teachers there are really great with trying to support kids get on top of their negativity & become more willing & co-operative at home. Time will tell on that score!

Of course running at the back of my mind is that Max really reminds me of my older brother, , who is now a wreck of a man... alcoholic, anorexic, bi-polar & ANGRY at his fate! I love my brother very deeply but I can do nothing to change anything.. looking back I can see how it all played out but not attended to.

With Max we KNOW that something needs to help him NOW or he's going to have terrible trouble becoming a fully fledged adult. I don't think I can bear to watch my grandson go through his adolsecence let alone on into adulthood! KNOWING just makes us all feel awfully responsible for his outcomes!

Here is MY TRUTH.. I DON"T want to still be around then! I guess that shows I don't have a lot of trust that it will turn out OK..... my family has such a lot of poor Mental Health History that genes are not on our side. I also have a younger brother with diagnosed Obsessive Complusive Disorder/ High Functioning Aspergers & many other Aunts/ Uncles/ Cousins with various problems. That's just OUR side of the family....

THERE'S NO NEED FOR ANYONE TO RESPOND TO THIS.... it's just a statement of MY reality..... .....

From a not-being -scilly

in Oz

> >> > First of all, I know we ALL have had our heartaches with our children> > in one way or another, but this is the Holiday Season for every one> > of us in one way or another. I AM TRULLY SORRY for the things I> > shared, guess somehow I was not

thinking straight and should have> > known much much better. Never thinking that what I said might> > trigger someone else's pain.> >> > I do apologize but I only was spilling out what I should have kept in> > my heart. I have always learned the hard way.> >> > So now on with the new right? The words: "Persistent Fighter" were> > made to be mine for a reason I guess. Yesterday was one of the best> > days I have had in months. Earl and I went for my pre-op physical,> > it was perfect, then we went on to W/mart, we just looked around for> > about an hour or so, got some things we needed then came home and I> > made dinner. I did all that and I had so much energy, it was> > amazing. Today and until they are all gone, I am using all the> > compressed oxy. tanks up because they are old "E tanks" and so I can> >

order fresh ones tomorrow. Am trying to cut down on the electric bill.> >> > I see there are quite few new members and I feel joy that they have> > come to our group. I wish them also a Blessed Holiday Season.> >> > I guess I'm back !!!!!!> >> >> > I LOVE YOU THIS DAY> > MARY LOU - RICHMOND VA> > IPF - 02> >>