Re: introduction

[Guest guest]

Debi--

Thanks for the welcome. For me, anyway, there's no reason to be

sorry you weren't quicker with it either...I know all too well how life can

intrude on our computer time, as well as not being in the best of shape. I

m just glad to meet you, and hope you'll beback soon so we can get to know

each other better. (G)

Marg

-- Re: Introduction

Hi All,

Just wanted to welcome all the new members to the group. Sorry I am not

online too much so have missed saying welcome to lots of new members. Sorry

pain has brought you here but the group is a wonderful place to be very

supportive!

Gentle hugs, Debi

[Guest guest]

Marg B wrote:

I'm glad to have found a place where I can unload some of my frustrations

and whines to people who understand, and hopefully take some of the burden

off them.

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Oh yes you can unload here - it's wonderful. A place to freely talk about

your pain to people who UNDERSTAND!

==========================================

We have a beautiful daughter, Abagail, who is 17 and sometimes very

frustrating (I'll be glad when she's over the teens...wish she could go

backwards and be my baby again!

------------

I hear you on that one! We have a 14 year old daughter and 12 year old son.

He's still ok but she is a teen wench! I do miss the baby stage but don't

forget how much WORK it was! lol

==================================

She wants to be a

fantasy writer, and has already written a pretty good book (she was 14 or 15

I think), but she has to learn to let others view her writing, and believe

them when they say it's good, not just because she's their daughter. (G)

---------------

My 14 year old has also written a book! She can whip out those chapters so

fast, she doesn't like the rewrites as much (no one does!). Right now we are

looking at how to get her published. Anyone have advice??

==========================================

We also have several critters, including 2 German Shepherds

4 cats, and 5 birds. At one time I was breeding birds, but no longer

-----------------

We also have 2 cats, 2 dogs and 5 birds! The cats are chartreaux, british

blue, dogs are dalmation and mini dachshund. The birds are 1 male eclectus, 2

cockatiels and 2 parrotlets. I recently lost my 17 year old male alexandrine,

he was my baby and it broke my heart. What type of birds did you breed??

======================================

I am a stitch-a-holic in the worst way--I love to do any kind of needlework,

crocheting, knitting, you name it.

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I, too, love to crochet and collect yarn! I couldn't possibly use all the yarn

I have and none of it is the right one for the next project so I just have to

buy or order more!!

much love,

barb k.

Barbara K.

__________________________________________________

[Guest guest]

Barb--

>Oh yes you can unload here - it's wonderful. A place to freely >talk about

your pain to people who UNDERSTAND!

I think that's the biggest " selling point " for this place--everyone

understands! Even if someone is not suffering as much as I am, or if I'm

not suffering as much as someone else, there's still the basic understanding

of dealing with it day in, day out. My husband and friends try to

understand, but they really don't.

>I hear you on that one! We have a 14 year old daughter and 12 >year old

son. He's still ok but she is a teen wench! I do miss >the baby stage but

don't forget how much WORK it was! lol

Yup, I remember how much work it was, but I was in heaven during those

years...I'd wanted to be a Mommy like my Mom (she was a wonderful one), and

had given up on it happening, when along she came. It was one of my life's

dreams come true. Besides, I found out, while researching to find her name,

I found out that St. Margaret is the patron saint of motherhood, so I am

just living up to my namesake (even it if was my grandmother, not St.

Margaret! (G))

>My 14 year old has also written a book! She can whip out those >chapters

so fast, she doesn't like the rewrites as much (no one >does!). Right now

we are looking at how to get her published. >Anyone have advice??

Let me see if I can find the email or web page I visited not too long

ago, that was for people who were interested in publishing a book on their

own...I sent either a copy or a link to my daughter, and hopefully I either

still have the email or saved the link in my Favorites list. I'll send it

to you privately. Abagail doesn't mind the rewriting too much, as she's

seen a lot of published novels with mistakes or grammatical errors in them

(she loves to proofread...I should get her a job! (G)), especially now that

computers are doing so much of it and don't always catch contextual errors.

She just won't show her work to anyone, and I'm afraid if I push it, I'll

make her hate writing, so I walk softly on that one.

>We also have 2 cats, 2 dogs and 5 birds! The cats are chartreaux, >british

blue, dogs are dalmation and mini dachshund. The birds >are 1 male eclectus

2 cockatiels and 2 parrotlets. I recently >lost my 17 year old male

alexandrine, he was my baby and it broke >my heart. What type of birds did

you breed??

I bred both Pacific Parrotlets and Hahns Macaws, as well as Zebra

Finches, although they sort of did it all themselves. I just stood back and

enjoyed the beeps and chirps and babies. (G) I had two pet Hahns Macaws,

the first one became a plucker, but did eventually breed with his mate and

gave me 2 babies to raise. The second one was Ducky, I got him when he was

3 weeks old and handfed him until he was weaned, and he was definitely part

of my heart. As my arthritis got worse, and I had more and more trouble

standing or walking, I knew he wasn't getting the care he deserved, so I

sent him to a good friend of mine in Oregon, who raises all kinds of Macaws,

including Hyacinths, and a place where I knew he would be loved and very

well spoiled and taken care of. He has a lady friend now, and I expect to

hear soon that there are little Ducky's on the way. I can understand how

hard it was to lose your alexandrine...{{{{{HUGS}}}}}

Marg

[Guest guest]

Hi ,

I don't know from your description if your son has ASD or not, but I would seek

an evaluation if you think he may. First thing is get insurance through

Medicaid if you qualify or if not, get CHIP (sorry, don't know much about that).

When you get Medicaid or Chip you can go to a psychologist or neurologist, but

better yet, a developmental pediatrician for a diagnosis. If you get one, you

can then insist the school do testing.

About school. If you were planning on homeschooling before, go ahead with your

plans. The PPCD most likely will do nothing for your son. Well, at least, in

our case, we were planning to homeschool, but when I found out Jay had PDD-NOS I

thought he needed intensive intervention and since we couldn't afford an ABA

school, I put him in PPCD. Well, at our school district, there is no intensive

intervention in PPCD. Looking back after 2 years, I feel it was a waste of

time. They have a different mindset than you. You want to get your son better

as quickly as possible. Well, to the school they just provide the minimum and

don't focus on recovery (or helping him reach his potential).

You can get the manuals and provide your own intervention that will be far

superior to what the schools provide most likely.

Marilyn

________________________________________

PeoplePC Online

A better way to Internet

http://www.peoplepc.com

[Guest guest]

,Contact the MHMR and they will most probably come and do an evaluation for free and see if your son qualifies for services from them for free.  It sounds like you all will qualify.So you guys are up near Sherman?  You can also contact the University of North Texas at Dallas and speak to their special education department or psychology department.  A lot of times they will do testing at no expense to you.  The testing may be done by one of their graduate students.

I think they also have an early intervention program there for kids just like your son.  I believe the Callier Center for Speech and Language Disorders is involved in it.  I would suggest that you get you hands on some PECS and a paperback of some basic signs and start trying to teach your son using these in the meantime.

My son lost ALL speech after vaccination at fifteen months.  he sounds a lot like your son in the sense that he is way ahead in some areas like computers and anything involving rote memory, but he is behind in so many other areas.  Children on the spectrum often have wide gaps in their abilities. 

Since you feel he is at high risk for an AS disorder, and that would include the child on the way, you need to get educated about vaccines in order to make an informed decision about  them.  I never tell a parent what to do regarding this, but I do tell them to get educated.  Dr. Cave wrote a very objective book called, " What Your Doctor may Not Tell You About Children's Vaccinations. "   In it there is also an alternate schedule you may want to consider, if you decide to vaccinate or continue to vaccinate.  There are also other sources on the web as well.  Simply know that Texas has conscientious objection to vaccination and if you fill out the form and get it notarized, your children can still go to school or daycare etc...

I tell you this simply because schools and daycares won't tell it to you.Our school did very little to teach our son to talk again.  Basically they just wrote him off.  We couldn't afford ABA, so I bought the ABA manual, " Behavioral Interventions for Young Children With Autism. "   It has a curriculum guide in there for the beginning, Intermediate, and advanced level. I had to pull my son from the district when he was three due to his health and the inappropriateness of the PPCD program.  For about a year or so, I think, I worked this program with him.  I also used basic signs, which he picked up quickly, and I used pictures to help teach him language. Repetition was the key for my son.  One day we spent a whole day learning the word " Water. "

Talk to your son all the time.  When we would have to drive somewhere, I would call out all the business signs like Mcs's and WalMart etc.... every sign I saw, and my son can now recognize a sign and what it says from a hundred yards away in the dark!  Man, he's got great night/distance vision!  i also rely on his photographic memory for a lot of things.  Thank God he seems to know where Mommy left her keys!

Another thing you can do to help him, I think, is use the fact that he likes to draw, but he never he draws a picture, write a caption under the picture and then read it to him.  Wal-Mart and Mardel's sells these Primary Journals that have a space for drawing on each page with lines for writing under them.  My son loves to choose family photos and write the captions, and then we read it together.

The first order of business is to get him tested. I think UTD or MHMR should be able to help.  Easter Seals charges, and as I remember, it was not cheap.  As soon as you get a diagnosis, you may want to put him on the DADS list and the CLASS list.  It can take up to seven years to get from the bottom of the list to the top, so you want to do this as quickly as you can.

[Guest guest]

Marilyn:I agree with you.  PPCD was a waste of time, but then so to has all of it been.  Looking back now, I wish I had just kept homeschooling him but I was worried about the social and home schools are not free.  Programs must still be bought and therapies supplied, so we have try to figure that part out.  I think they should have to provide this.

[Guest guest]

Haven I think there are ECI people who have individual beliefs and they share

that with their clients. But as a whole the organization follows the gov't and

what they decide funding should go to.

When I shared what we had done with Tyler to ECI nutritionists....they replied

" we could never get our families to do that. "

I don't think it is fair to judge what a family is capable of. I guess I'm not

in their shoes and don't go into the homes they are speaking of. However I

think parents will do what makes sense...however they hear such conflicting

info. Nobody knows what it is like to be on our side. We almost become

mentally ill, it's so scary and confusing. Then when we act carazy (I did) I

felt judged. But I felt like I was in a bad dream, that made no sense. I

remember realizing NOBODY KNOWS WHAT IS GOING ON.

For example when I asked about diet back in 05, I got a rolling of the eyes.

As if to say " some quacky parents are trying it. "

Sadly the personal opinon of the ECI worker largely determines the care your

family gets.

While I believe ECI has wonderful intentions....we have much work to do.

>

> Yes! Great information! I don't care about labels; just heal my son's

> body. Let him be who he is without the health issues.

>

> It's funny though, our ECI therapists are the ones who told me about the

> gf/cf diet. This was back in 2003. I will be forever grateful to these

> therapists. They gave me a lot of support through the three weeks of

> withdrawal he had from casein.

>

[Guest guest]

Yes, we were just lucky with who we got and that they shared their personal opinions with us.  I was the one who was skeptical!  They suggested it to me and I thought, " Well, what difference is a diet going to make? "   Then I looked into what it meant, and I was just overwhelmed and heartbroken.

I was heartbroken because I am of Sicilian descent on my mother's side.  My grandparents came over from Sicily (well actually my grandmother was born here, but then take back to Sicily and registered there and you couldn't have dual citizenship, so she lost her US citizenship --that's

 another story)  Anyway, I grew up around my mother's side of the family.  Two doors down from my grandmother's house was my cousin's Italian restaurant.  There was always Italian food!  I mean what was life going to be like without pizza?!!!  I couldn't imagine not bringing him up on meatballs and lasagna!  And oh!  The cheeses!  He couldn't have my homemade ricotta?!!! Pure torture.  No egg cakes or eggs cooked with Romano?  I had all these recipes to pass down, and then all of sudden I wasn't going to be able to do that.  And this was actually the hardest part --getting over this idea of passing down the recipes and having him enjoy Italian food.  No antipasto!

But now he has eaten some Italian salad.  We just make it with rice or Bragg's apple Cider vinegar instead  of Balsmic or wine vinegar, and Applegate Farms makes quite a few cold cuts that are gf/cf/sf and nitrite free etc... so he can have something of an antipasto once in a while.  He didn't like the real Italian sauce that I made to be safe.  He eats gf/cf/sf pastas but would rather just have a vegetable juice or the un-tomato vegetable juice on it. I can make Italian sausage gf/cf/sf at home with no casing, and he likes this, especially if I put in some chopped potatoes with it once it a while.  We substitute parsnips for a lot of potato recipes to lower the total amount of oxalates, but we tried going very low oxalates and saw no difference there.  I had never had a parsnip!  They make great potato pancakes and hash browns and even " chips. "

But alas, no Ciabata or Italian bread of any kind.  My other cousins still have an Italian restaurant in Dallas, and my cousin is so kind to my son.  They make him a special plate when we go there.  They make french fries from fresh potatoes and cook them in olive oil and a chicken breast cooked in olive oil and fresh tomato slices.  They cook it in clean pans.  We only do this once in a while. 

I learned to cook by watching my mom and grandmother cook, and they always cooked for a lot of people, so I don't know how to make a small lasagna, so now I just make it once a year for New Year's Eve and invite a bunch of people over to eat it. 

It has always been tradition in our family to make Cucidati at Christmas time.  I have got to figure out how to make these gf/cf/sf.  When I was a girl, my grandmother had a huge fig tree in her back yard and we would pick them and she would dry them to use later in the Christmas cookies.

Now, my son leaves gf/cf/sf cookies for Santa with rice or coconut milk.  " Santa is gluten free too Mommy? " I know he is ten and soon will come the time that we must explain that it is the spirit of Saint Nick that lives on, but I'm not ready to let the innocence go yet.  I think we take it away too soon for children these days.  Next year is soon enough.

Perhaps the kids at school have already said something.  Well, I got passed the sadness of not being able to pass the recipes on.  Even though I was skeptical, we dove into the diet, and for my son, it made a lot of difference, so I'm glad we did.