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What to expect?

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Day one and it went good, Josh was pretty calm all day, so far so good,

he seemed much the same, but little things he did I noticed like he

came and gave me a kiss spontaniously to say goodbye, when my Mum took

him to the shop, usually I would have to ask him for a kiss and tonight

he kissed my Mum and Dad goodnight which he hasnt done in ages. Also

whilst he still did alot of head butting today. He didnt do it in his

normal fit of rage fashion so much, were he hurts himself, but he just

did it really softly makingsure not to hurt himself, so that is a HUGE

result for me. My poor baby daughter is being neglected a bit. Must

go and put her to sleep. Thankyou all for your support and insights

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Sounds good ! I hope the rest of the round is peaceful. Our son

never got to the fits of rage head butting, he mostly did what your son

was doing - gently as so not to hurt himself. It was before we realized

what was going on, but quite a hoot. Improvements will probably be slow

and small, but it is worth it. My son, who is older, was having some

serious fits of rage before we started, even self-harming and breaking

favorite things. But, after 6 months we are noticing that any more.

Now, he is able to get upset, but remain calm and discuss it. His

biggest problem was language; he had it but had a road block between his

brain and mouth when upset. Now! WOW!! He gets upset, and can talk to

us. We used to wait hours, literally, and I had a to do a lot of

talking for him in public (which made people think I was a terribly

controlling mother). Now, he can communicate even when upset. I'm

loving it!! Good things are ahead, but remember it is slow and steady

that wins the race.

P.

wrote:

>

> Day one and it went good, Josh was pretty calm all day, so far so good,

> he seemed much the same, but little things he did I noticed like he

> came and gave me a kiss spontaniously to say goodbye, when my Mum took

> him to the shop, usually I would have to ask him for a kiss and tonight

> he kissed my Mum and Dad goodnight which he hasnt done in ages. Also

> whilst he still did alot of head butting today. He didnt do it in his

> normal fit of rage fashion so much, were he hurts himself, but he just

> did it really softly makingsure not to hurt himself, so that is a HUGE

> result for me. My poor baby daughter is being neglected a bit. Must

> go and put her to sleep. Thankyou all for your support and insights

>

>

>

>

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  • 2 years later...

Diane,

Don't feel overwhelmed by this info link. I totally understand how it can look

daunting. Just scroll down to the " File Attachment " . There are a few. The

ones I use are #1: LYME FLYER and #3: Lyme disease and Tick prevention and

removal tips. I don't distribute the Lyme Flyer to my students, just the tick

prevention tips.

Print out a few and give them to your in-laws, ex, and the health office at the

kids' school. Save some for yourself to keep in your bag. When someone

questions anything, hand them the info. I don't have Lyme but I can get

overwhelmed explaining to friends and relatives. My daughter, who does have Lyme

and co-infections, prefers not to have to explain everything to her friends.

These two handy-dandy printouts are awesome!

And, by the way, you DO have a title and an education. Your title is mom,

protector of her children, education provider, health sentinel, and love

distributor. This is the hardest, most important job in the world. Your

education goes leaps and bounds beyond what most people learn about a given

illness. One day you will feel better.

Use your energy to heal. Let your mother help you. Try not to focus too much

on the people using up your positive energy. Sleep when you have to.

For everyone out there who missed the link to this great Lyme info the first

time I posted it, here it is again. Use it in good health!

http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/14\

39835-lyme-flyer-2010

batikquilt

________________________________

From: Diane Biel <dkbmama@...>

Sent: Mon, October 11, 2010 11:43:23 AM

Subject: Re: [ ] Re: what to expect?

Bless your heart for sending me this info.......I have to take the time to sit

down and print out so much stuff again - I did it last year before all the

craziness started and put everything aside for a bit -

I also have in-laws that do not believe my disease and there grandchildren

disease.......its pure hell!! They think I am lazy and should get a full time

job and for Gods sake - make those children go to school - education is

important!! I had to leave my dream of college twice when I was so sick never

got to go back.....had to sell my beauty salon due to this disease and they look

down on me because I do not have a college degree and I job with a

title.............its been pure hell - but I have my mother who is my rock and

all of you who support me and let me know I am not alone with this

struggle..........you are all angels to me.........you not only are saving

yourself, your children, other and by being a part of this lyme posting......you

have also saved my life.......I truly am not alone and never will be again with

this terrible disease.........Bless you all!!!!!!! Diane

________________________________

From: Kaethe <batikquilt@...>

Sent: Mon, October 11, 2010 9:11:47 AM

Subject: Re: [ ] Re: what to expect?

Diane,

I honestly don't know how you are coping with all this. My heart and my utmost

respect go out out you.

Here is the link to the Lyme flier and the tick information that I use and hand

out to people everywhere. They are written by a layperson, not a doctor, just

to be aware. However, I have found these two things to have such a wealth of

information and it's handily condensed down to something people may actually

read. Click on the file attachments to read them.

http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/14\

39835-lyme-flyer-2010

I wish you the best of luck and healing for you and your children. Give one of

these Lyme fliers to your kids' school nurse and their father. Maybe they'll

both be a little more understanding.

Kaethe

________________________________

From: Diane Biel <dkbmama@...>

Sent: Thu, October 7, 2010 10:26:07 PM

Subject: Re: [ ] Re: what to expect?

Do you by chance have something I can give to my daughters school nurse? Her

father that has not been apart of her life but wanted child support dropped and

I would not then went to the school nurse and made me out to be crazy and her

llmd to be crazy - so now she thinks lyme is untrue!! I even had to get a CFS

doctor to be able to help with her 504 plan at school because of her

absentees....so sad...they look at me as I am a lier now and lyme disease

doesn't do this to you and that the test from children's hosp says her wb is

negative but it really says it unequivocal - and that doesn't mean negative -

they don't understand. It's been pure hell - at least the courts now do not

make my daughter see her father.......but he lingers on and tries to make me

look like a crazy mom that just lets her daughter stay up all night and then

stay home if she wants.........and my daughter LOVES school - she would be there

everyday if she could!! Anyways, do you think you could email me something that

you use as a handout or anything that would get her to try and understand again

what my poor daughter lives with?

Bless you for helping others as you do - I am so sorry for your

daughter..........I have three girls that have lyme and myself.........it's been

hard to say the least.......and when school is in the stress of being the bad

people when me girls are home sick is such a terrible stress school systems put

on us.............if only we had a magic wand.........Bless you!!

________________________________

From: batikquilt <batikquilt@...>

Sent: Thu, October 7, 2010 8:51:45 PM

Subject: [ ] Re: what to expect?

I'm a school nurse. I have a huge pile of " Lyme disease and Tick prevention and

removal tips " for my students to take and read. I am trying to educate everyone

in the school where I work about Lyme disease and co-infections. My friend put

this informative sheet together as well as a " Lyme Flyer " , which lists symptoms

and resources, web pages and other helpful tips. It is exactly what I wished I

had when I started this journey when my daughter became ill. I keep a supply of

both printouts in my over-sized purse and hand them out to everyone I come

across whether they want them or not! Well, that might be a slight exaggeration,

but I would do anything to help anyone from going though what my poor daughter

has gone through, and continues to endure. I have even given them to complete

strangers in the checkout line at Target.

Fond thoughts to all who are supporting those who are suffering from Lyme and

co-infections, especially those caregivers who are ill themselves. May all find

comfort and health.

batikquilt

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