Re: It just SUCKS.........

[Guest guest]

I agree with Liz -talk to the family. who you can find on

this Inside Edition TV link's show on apraxia

http://www.cherab.org/news/insideedition.html didn't get any therapy

for apraxia (like ) until high school age- and on the show she

has a flaccid sound to her speech (she sounds hearing impaired) She

shared a very personal story with all of us and the Inside Edition

film crew that when she was a little girl her grandfather never paid

any attention to her and that " he thought I was retarded or

something " and how she grew up being teased most of her life. (keep

in mind this was years ago and no therapy –no diagnosis of apraxia

until HS age so she was essentially nonverbal and schooled as severe

learning disabled)

She said that once she got the correct diagnosis and started to speak

and was going off to college her grandfather wanted to speak with

her –and she said " and I don't want anything to do with him or anyone

who didn't accept me as I was as a little girl " Tell your family

about that –perhaps they don't realize that just because a child

doesn't talk doesn't mean they don't understand –doesn't mean they

can't remember –and doesn't mean they don't have feelings that can be

hurt.

Below is a fabulous message from Deborah who I hope also comes back

to join us. She shares a wonderful tip from tantrum situations when

rude individuals stare or make comments. It's a business card that

her one son came up with that's priceless!

" My oldest son has his own which he wrote and can humiliate the

most hard assed smart arse in ten seconds!!! " please show your

kindness and do not stare - he is just a boy trying to fight his

illness "

Here's the entire archive

[ ] Re: Temper Tantrums plus intro -

2nd Apology

Hi Anne-,

I am the one whose son does the major screaming trick and I just

wanted to assure you that I wasn't trying to suggest I was upset

by your comments. I only posted for two reasons . Firstly because I

knew there would be parents out there who would be saying to

themselves that they apply the same approach and it dosen't

work ..and when that happens to you , you feel like such a failure .

I just wanted to speak to my own experience - that sometimes

unfortunately it dosen't work!

And you didn't post anything nasty of unpleasant you were just

saying what most of us have said before when seeing a bad display in a

store-just because I now know different dosen't mean that I used to

stand behind some tantruming child and think " poor thing - I wonder if

he has profound communication difficulties that impair his ability to

rationalise this situation appropriately !! " LOL ..as if !!!!

I think your post reflected what many of us think and many times

we WILL BE RIGHT !! There are bratty kids out there with pathetic

parents who make life even harder for the rest of us !!

Our kids look the same as everyone else and that is both a

blessing and a curse.So now i just never make assumptions based on

what I see because I just don't know.That's all I was trying to say.

And standing behind someone and forming a view on what they are doing

is entirely everyones perogative - I was speaking because of the

number of people who have to tut or comment or get in your face !!

I carry " business cards " with a brief description of Charlies

condition which I hand to anyone attempting to comment or

interfere.

My oldest son has his own which he wrote and can humiliate the

most hard assed smart arse in ten seconds!!! " please show your

kindness and do not stare - he is just a boy trying to fight his

illness " . I have developed a thick skin now . It is a sign I think

of how I accept Charlie that other people's views don't matter - but

oh for months and months it did!

I am always polite(almost !!) . I keep it brief and I try to

accept that some people enjoy the prospect of putting a " bad mum " in

her place ( a lot of women of a certain age !!!) and I try to forget

it as soon as possible .

If all else fails " he has autism but therapy is helping whereas

you will be stupid and rude forever " works ! Funnily enough my six

foot , 14 stone, rugby playing husband seldomn gets any comments when

he takes Charlie out - now I wonder why that is !!!! Any ideas

Best regards - and belated welcome to the board

Regards

Deborah Dore

And below that I wanted to share a post that she wrote about her son

that is so beautiful I call it a poem.

" I love Charlie - he is a joy to be with, a small angel dancing

through my day - but I know he will still be here when I am gone and

I fear for how he will cope without me. Do I love him as he is?

Yes with all my might. Would I take his autism if I could? In a

heartbeat. He copes without the sympathy or empathy that an illness

generates and as he gets older the staring and commenting and his

isolation from the world in general will only increase. The world is

too intolerant for him. But that is their loss.

I can't compare my life with Charlie to that of a mother with a

terminally ill child - I would not dream of trying. But the argument

that terminal illness must inevitably be worse is simplistic and

surely cannot be productive.

The fact that we cope with what life sends us is the test - and how

fantastic that we all do. And we not only cope but support each

other. I find role models around me now and when people say to me

" I couldn't cope with what you have to " I always have to quietly

laugh and think oh yes you could - if you have to you could - you

have no choice. Love gives you no choice

Best regards

Deborah D

=====

[Guest guest]

I am so very sorry to hear about grandparents not understanding, not

caring, not loving these children. Any child, for that matter. I

have 12 grandchildren, Corbin, is my youngest. I love each and every

grandchild,and I am Corbin's caregiver five, sometimes six days a

week. I retired to take care of him, and I do not regret any minute

or second of it! He's the only grandchild with a disability (well,

one was born with diaphragmatic hernia and was in NICU for 62 days,

but he's doing great), but I don't consider Corbin any different from

any of them. Yes, I treat him differently, but with more love than I

ever thought possible. I prayed for two years before I retired,

wanting it to be what we all needed, and now I know that God had a

purpose for me. My purpose is to be the caregiver, teacher,

protector, champion for the most precious child in the world. He's

special because of the love he gives us, he's different because he

has more courage and persistance than any human I've known, and he's

challenging because God gives us all challenges to conquer. I'm the

one who is blessed to have the opportunity to be here for him. The

grandparents you spoke of are and will be void of the most precious

blessing God can give----your child.

Pat Nicholson,

aka Nana

>

> Unfortunately-- I wish I could say that this would work with my own

inlaws.

> I know it would only make things WORSE!

>

> My inlaws-- gosh-- I really do need to write a book about them, but

in a

> nutshell, just considering the way they speak to my TYPICAL child,

I never want

> them around my A-typical child. (love the words? LOL)

> But seriously-- they are just cruel, nasty people who don't deserve

to have

> grandkids-- so unfortunately, talking to them would only make

things worse.

>

> I hope it's not the case for her family though

>

>

>

> Becky

>

>

> In a message dated 4/2/2008 8:33:37 P.M. Eastern Daylight Time,

> kiddietalk@... writes:

>

>

>

>

> I agree with Liz -talk to the family

>

>

>

>

>

>

>

> **************Planning your summer road trip? Check out AOL Travel

Guides.

> (http://travel.aol.com/travel-guide/united-states?

ncid=aoltrv00030000000016)

>

>

>

[Guest guest]

Becky I'm so sorry to hear this too. (

When my kids were little there was this lady that used to lived up

the street from us named ita who was around 80 years old -retired

from our town school -quick witted- would get down on the floor with

both my boys (who both had special needs at this point) Even though

my husband and I both have moms that were and are always good to our

children- they didn't live as close as ita. Outside of my

sister- ita was from memory the 'only' person I felt at all

comfortable leaving my kids with ever which wasn't often. (my son

Dakota was high risk for SIDS -not sensory either -the other one!)

And she never just played with them -she played with them but at the

same time was always teaching them. She always had words of advice

about everything from kids to spices to life!

She's the one that introduced my boys to the Tank (huge!!)

and tons of books that became their old time favorites including

Where, Oh, Where's My Underwear? Barney Saltzberg

http://search.barnesandnoble.com/Where-Oh-Wheres-My-Underwear/Barney-Saltzberg/e\

/9781562826949

I bet there may be a ita that lives around you somewhere?

=====

[Guest guest]

What they should have said is you are so blessed to have seven with an

eighth on the way AND the talent to cope with it all with such grace.

When are you due, by the way? Please tell me you have helpful

relatives!

in NJ

> Then they found out that I have SEVEN kids with the EIGHTH on the

way, and

> one made the comment outloud that they shouldn't complain so much

since they

> don't have it so bad, etc.

[Guest guest]

Well, at least you've been there, done that. I got two whole days of

help from my parents when I had #4. And they are young (fifties at

the time) AND retired. I finally got my husband to take some time

off. I think I got a week out of him. That was better than with #1 -

- he was back to work before I checked out of the hospital that time.

I forbid you have gestational diabetes!

in NJ

>

> LOL you're too sweet! I think if those ladies said something like

that I

> would have dropped dead at site!

>

> I've got something like 8 wks to go now? I'm trying NOT to keep

track so it

> goes faster-- so it's either 8 or 9. LOL

> It's not really going by any faster- but it helps not to

concentrate TOO

> much on it! ;-)

>

> I just found out TODAY that I failed my GTT and have to go for the

3 hour

> one! That is one complication that I just do NOT need at this

stage in my life

> :-( <sigh> Praying that it's not Gestational Diabetes and that

the

> failing of the 1 hr test was just a fluke

>

> Hmmm helpful relatives-- Um NOPE! Inlaws are local-- and they are

hideous

> to say the least. My husband works with his father, and his idea

of being

> helpful is to go away for 1 month right when the baby's being born,

so my

> husband can't be around either! @@ I'm saying that sarcastically-

- the FIL didn't

> do that with that sole intention, but that's how they are-- he's

literally

> leaving the country for a month around the time that the baby is

due, which

> means I'll barely even get to see TOM! <sigh>

> And my mom was basically the helpful one with the kids-- but she

died 2 yrs

> ago. Dad is remarried and living in Canada-- so he's out of the

picture, too

> :-(

>

> ok-- pity Becky day

>

> Becky

>

>

> In a message dated 4/2/2008 11:54:40 P.M. Eastern Daylight Time,

> bigcheech91@... writes:

>

> What they should have said is you are so blessed to have seven

with an

> eighth on the way AND the talent to cope with it all with such

grace.

> When are you due, by the way? Please tell me you have helpful

> relatives!

>

>

>

>

>

> **************Planning your summer road trip? Check out AOL Travel

Guides.

> (http://travel.aol.com/travel-guide/united-states?

ncid=aoltrv00030000000016)

>

>

>

[Guest guest]

The million dollar question...right up there with how many kids with

autism have apraxia? If we knew that one and people could see the

apraxia as a separate condition, like a diabetic with, peripheral

neuropathy, perhaps 's funding would come easier.

>

> What percentage of kids with apraxia have autism?

>

>

>

> **************Planning your summer road trip? Check out AOL Travel

Guides.

> (http://travel.aol.com/travel-guide/united-states?

ncid=aoltrv00030000000016)

>

>

>

[Guest guest]

I didn't get ANY help with #4 from either side.

I got a day with #1 from my Mom.

>

> Well, at least you've been there, done that. I got two whole days of

> help from my parents when I had #4. And they are young (fifties at

> the time) AND retired. I finally got my husband to take some time

> off. I think I got a week out of him. That was better than with #1 -

> - he was back to work before I checked out of the hospital that time.

>

> I forbid you have gestational diabetes!

>

> in NJ

>

>

[Guest guest]

Tried the cleaning ladies (3 different companies) and NONE worked out.

I found it caused way too much stress than it helped. Besides they

didn't get the cherrio's out of the corner and the last straw was

finding dirty diapers pushed under the beds (they were on the middle

of the floor - the kid didn't put it in the garbage....)

Now I have more $$ for chocolate

>

> Tell me about it! LOL

>

> So you all can imagine how I felt yesterday with those two who had

nannies

> and 2 kids and nothing else going on in life. UGh

>

> I almost wanted to tell them to try to live a day in MY life with 7

kids--

> which that factor ALONE would have those women running away screaming,

> guaranteed! LOL Then add that I'm homeschooling 5 of them, one

being the special

> needs child-- etc. Then add toddlers to the mix and baby coming--

forget it,

> these ladies wouldn't last 15 min in my house! LOL

>

> I would LOVE a nanny or housekeeper, or better yet-- a COOK! How

nice would

> that be? LOL

>

> ahhh the dream world, ladies-- how nice is it to just think about

it? ;-)

>

>

> becky

>

>

> In a message dated 4/1/2008 10:04:36 P.M. Eastern Daylight Time,

> brentsusan@... writes:

>

> NEED A CLEANING LADY MORE THAN

> ANYONE ELSE!!!!! Ba Hum Bug.

>

>

>

>

>

> **************Planning your summer road trip? Check out AOL Travel

Guides.

>

(http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

>

>

>

[Guest guest]

No help here from family with either kid but hubby was great.

Extended family here is old and loves us imperfectly. Oh well, at

least they love us:)

Be well and just say no to diabetes. Those tests are nuts. I fell

unconscious during my test with yet it came up negative...go

figure!

> >

> > Well, at least you've been there, done that. I got two whole

days of

> > help from my parents when I had #4. And they are young (fifties

at

> > the time) AND retired. I finally got my husband to take some time

> > off. I think I got a week out of him. That was better than with

#1 -

> > - he was back to work before I checked out of the hospital that

time.

> >

> > I forbid you have gestational diabetes!

> >

> > in NJ

> >

> >

>