Re: To Summer / Was Re: OT speech

[Guest guest]

Sandy and Suzanne,

I have the same worries. If I die, who will care for my young ones. I have

been quite ill in the past as well. You guys tell me I am quite strong, but in

truth, I often feel most weak. Like many on these boards, I deal with my own ASD

issues. Fundamentally, autism is okay. People with ASD will be okay, its not us

against the world, we are in the world.

With the progress we have made on SCD, enzyme therapy, etc. I see how its

possible to bring a child to wellness. If we had children who were not autistic,

we would still, as moms, lose sleep at night. It is the nature of motherhood.

I do wish our communities were set up in such a way as to support children,

and moms of children, special needs or not. But, perhaps something needs

strengthening here.

Wouldn't it be wonderful if SCD people in each locale could partner up as

child rearing backups in case of crisis? Can we form new tribes of people who

actually care about one another? Families of Choice?

And Suzanne, I was unable to breast feed both my children. I tried as I might

(with help) to breastfeed Hunter, he would not drink and I pumped until I dried

up. I now believe my milk was toxic. With Ben, I wrapped my breasts tight after

delivery, I was on some pretty severe medicenes. 31/2 years breastfeeding is

quite a stretch, I think you should pat yourself on the back for that one. Your

Tom is ready to move on, do not feel guilty.

Summer

Suzanne wrote:

Hi Sandy,

((Hugs))

Your letter touched me. First, I want to say what an inspiration

you have been to me. Since I joined pecanbread I have been in awe of

the amazing job you are doing with your son. There are days I think

just of your signature line " Entire family SCD in support of a 5 yr

old who rages " . I am finding it hard going to stay on our extremely

limited SCD myself, and that one line speaks volumes to me about

your strength and perseverence.

I am 47. I cannot imagine how I'll feel when I'm 57, I'm plenty

tired now. To be older means it is more work and there are fewer

years left for us to help solve our children's problems before they

are left to face the world on their own. It is a frightening

prospect. Having a child at 43 was a second-marriage decision,

almost an afterthought. A welcome one, but I was completely

unprepared for the level of challenge. We too have nobody to help

with our son if something happens to us. I'm a cancer survivor, very

conscious of how precious and fragile life is. My family is

worthless, and in any case both my brothers have refused to serve as

guardians for my son. My parents are still alive but are elderly and

too busy enjoying their retirement to spend any time with my son.

They have poor judgement and are not to be trusted to even avoid his

allergens. They don't even believe in carseats. Our " best " option is

my husband's brother with Asperger's, who's reasonably bright and

loving, but often unemployed and currently living 2,000 miles away

from his wife for career purposes (also Asperger's but more stable,

employable and responsible).

I have been feeling very guilty lately, and I haven't posted about

it, but you might understand. I am in the process of weaning my son.

Although he's 3 1/2 and I've been planning this for a year, it's

partly happening now because I find I'm unable to maintain such a

limited diet. I have been on an extremely limited diet for over

three years now, and I just can't live on 2 vegetables and one meat

anymore. This is where the guilt comes in. I look at the example of

you and the other SCD parents on the board, and I think " Why can't I

do that? " And then I remember the moms who tried so hard to

breastfeed their children and were unable, and the guilt they felt

at having to give their babies formula. We can never be perfect. I

think we older mothers sometimes are the ones who try the hardest,

who hold ourselves up to an un-achievable image of perfection,

because we've got the patience and the fortitude and the experience

to try to do " just one thing more " . But wisdom comes in knowing when

to step back and take the slower path at times, to ease up and be

gentle with yourself.

So for Mothers Day, please give yourself the gift of gentleness and

peace. Know that you are doing so much more for your children than

so very many other parents, and that your hard work has reaped

tremendous rewards already. And realize that you deserve your own

love and occasional rest yourself. Be gentle with yourself - you are

a most amazing mother.

Suzanne

> >

> > Summer, you continue to be an inspiration. Thank you for telling

> us

> > a little of your story. It takes great strength to succesfully

> > parent a child with autism, and even more strength to try and

heal

> > the sick children we all are attempting to do with great effort

on

> > the SCD.

> >

> > Motherhood is difficult enough for any woman, and those of on

this

> > list face additional large challenges. Sometimes they seem

> > insurmountable. I'm sure I'm not the only one who wonders every

> > day " Am I up to this challenge? "

> >

> > Some of us have had to carve a path ourselves, figuring out each

> > day's answers fresh every morning. Occasionally, we find other

> > mothers in whom we recognize the strength and grace and wisdom

we

> so

> > badly want to possess ourselves. Inspiration comes rarely,

> quietly,

> > sometimes hard to see, but so welcome when it appears. It is

> mothers

> > like you to whom we look in those dark days when inspiration and

> > answers seem lost. Sometimes the answer is " I don't have the

> > answer ... look harder for your own answer - search, question,

> seek,

> > research, try and try again! " Sometimes the answer is so simple

as

> > to escape us in our desperation: " Give the kids to their dad for

a

> > few hours and get some sleep! "

> >

> > So Summer, thank you for taking time every day to shed some warm

> > light and intelligence on this little corner of the internet.

Have

> a

> > wonderful Mother's Day with your beautiful boys. They are so

> > fortunate to have been graced with you for a mother.

> >

> > Suzanne

> >

>

For information on the Specific Carbohydrate Diet, please read the book

_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

websites:

http://www.breakingtheviciouscycle.info

and

http://www.pecanbread.com

[Guest guest]

This is sort of why the SCD Angels group started on another list, I have not

been active with it lately mostly because of being overwhelmed at work, but

I will try to get things going again soon

>

>Reply-To: pecanbread

>To: pecanbread

>Subject: Re: To Summer / Was Re: OT speech

>Date: Fri, 12 May 2006 16:39:02 -0700 (PDT)

>

>Sandy and Suzanne,

>

> I have the same worries. If I die, who will care for my young ones. I

>have been quite ill in the past as well. You guys tell me I am quite

>strong, but in truth, I often feel most weak. Like many on these boards, I

>deal with my own ASD issues. Fundamentally, autism is okay. People with ASD

>will be okay, its not us against the world, we are in the world.

>

> With the progress we have made on SCD, enzyme therapy, etc. I see how

>its possible to bring a child to wellness. If we had children who were not

>autistic, we would still, as moms, lose sleep at night. It is the nature of

>motherhood.

>

> I do wish our communities were set up in such a way as to support

>children, and moms of children, special needs or not. But, perhaps

>something needs strengthening here.

>

> Wouldn't it be wonderful if SCD people in each locale could partner up

>as child rearing backups in case of crisis? Can we form new tribes of

>people who actually care about one another? Families of Choice?

>

> And Suzanne, I was unable to breast feed both my children. I tried as I

>might (with help) to breastfeed Hunter, he would not drink and I pumped

>until I dried up. I now believe my milk was toxic. With Ben, I wrapped my

>breasts tight after delivery, I was on some pretty severe medicenes. 31/2

>years breastfeeding is quite a stretch, I think you should pat yourself on

>the back for that one. Your Tom is ready to move on, do not feel guilty.

>

>

> Summer

>

>

>

>Suzanne wrote:

> Hi Sandy,

>((Hugs))

>Your letter touched me. First, I want to say what an inspiration

>you have been to me. Since I joined pecanbread I have been in awe of

>the amazing job you are doing with your son. There are days I think

>just of your signature line " Entire family SCD in support of a 5 yr

>old who rages " . I am finding it hard going to stay on our extremely

>limited SCD myself, and that one line speaks volumes to me about

>your strength and perseverence.

>

>I am 47. I cannot imagine how I'll feel when I'm 57, I'm plenty

>tired now. To be older means it is more work and there are fewer

>years left for us to help solve our children's problems before they

>are left to face the world on their own. It is a frightening

>prospect. Having a child at 43 was a second-marriage decision,

>almost an afterthought. A welcome one, but I was completely

>unprepared for the level of challenge. We too have nobody to help

>with our son if something happens to us. I'm a cancer survivor, very

>conscious of how precious and fragile life is. My family is

>worthless, and in any case both my brothers have refused to serve as

>guardians for my son. My parents are still alive but are elderly and

>too busy enjoying their retirement to spend any time with my son.

>They have poor judgement and are not to be trusted to even avoid his

>allergens. They don't even believe in carseats. Our " best " option is

>my husband's brother with Asperger's, who's reasonably bright and

>loving, but often unemployed and currently living 2,000 miles away

>from his wife for career purposes (also Asperger's but more stable,

>employable and responsible).

>

>I have been feeling very guilty lately, and I haven't posted about

>it, but you might understand. I am in the process of weaning my son.

>Although he's 3 1/2 and I've been planning this for a year, it's

>partly happening now because I find I'm unable to maintain such a

>limited diet. I have been on an extremely limited diet for over

>three years now, and I just can't live on 2 vegetables and one meat

>anymore. This is where the guilt comes in. I look at the example of

>you and the other SCD parents on the board, and I think " Why can't I

>do that? " And then I remember the moms who tried so hard to

>breastfeed their children and were unable, and the guilt they felt

>at having to give their babies formula. We can never be perfect. I

>think we older mothers sometimes are the ones who try the hardest,

>who hold ourselves up to an un-achievable image of perfection,

>because we've got the patience and the fortitude and the experience

>to try to do " just one thing more " . But wisdom comes in knowing when

>to step back and take the slower path at times, to ease up and be

>gentle with yourself.

>

>So for Mothers Day, please give yourself the gift of gentleness and

>peace. Know that you are doing so much more for your children than

>so very many other parents, and that your hard work has reaped

>tremendous rewards already. And realize that you deserve your own

>love and occasional rest yourself. Be gentle with yourself - you are

>a most amazing mother.

>

>Suzanne

>

>

>

> > >

> > > Summer, you continue to be an inspiration. Thank you for telling

> > us

> > > a little of your story. It takes great strength to succesfully

> > > parent a child with autism, and even more strength to try and

>heal

> > > the sick children we all are attempting to do with great effort

>on

> > > the SCD.

> > >

> > > Motherhood is difficult enough for any woman, and those of on

>this

> > > list face additional large challenges. Sometimes they seem

> > > insurmountable. I'm sure I'm not the only one who wonders every

> > > day " Am I up to this challenge? "

> > >

> > > Some of us have had to carve a path ourselves, figuring out each

> > > day's answers fresh every morning. Occasionally, we find other

> > > mothers in whom we recognize the strength and grace and wisdom

>we

> > so

> > > badly want to possess ourselves. Inspiration comes rarely,

> > quietly,

> > > sometimes hard to see, but so welcome when it appears. It is

> > mothers

> > > like you to whom we look in those dark days when inspiration and

> > > answers seem lost. Sometimes the answer is " I don't have the

> > > answer ... look harder for your own answer - search, question,

> > seek,

> > > research, try and try again! " Sometimes the answer is so simple

>as

> > > to escape us in our desperation: " Give the kids to their dad for

>a

> > > few hours and get some sleep! "

> > >

> > > So Summer, thank you for taking time every day to shed some warm

> > > light and intelligence on this little corner of the internet.

>Have

> > a

> > > wonderful Mother's Day with your beautiful boys. They are so

> > > fortunate to have been graced with you for a mother.

> > >

> > > Suzanne

> > >

> >

>

>

>

>

>

>

>For information on the Specific Carbohydrate Diet, please read the book

>_Breaking the Vicious Cycle_ by Elaine Gottschall and read the following

>websites:

>http://www.breakingtheviciouscycle.info

>and

>http://www.pecanbread.com

>

>

>

>

>

[Guest guest]

Suzanne,

You have a bit of transcendental poet in you!

Why not? Why couldn't we make a settlement? Gather many with talents, special

needs, and special needs kids. Why, on these boards alone, I see doctors and

nurses, musicians, authors, poets, scientists, inventors, pioneers, techies,

artists. Every person has a unique strength that can be identified when young.

As the young children grow up, there are extra hands. It really takes a village

to raise a child. Also, with many people of different specialities, these

beautiful children will have plenty of access to painters and other visual

artists, engineers, architects, poets, and so forth. Spectrum children have so

much time and energy put forward for their language and basic skills, but not

enough access through schools and society to make what they can of their

incredible strengths. High functioning, low functioning has nothing to do with

this...each child has something special to share with the world, is something

special.

In the short term, I am writing a lengthy will that specifies, should I die,

each of the current supps my children take, where to ask people for advice

('s website, pecanbread, etc.), the company addresses and phone numbers

for ordering the supps and details. I am also in midst of writing another

cookbook, this time with the foods my children eat. As Tom gets older, work with

him on recognizing the foods he eats at the store or wherever and making his

basic foods. My kids are a bit older than he, I have worked with them on basic

cooking skills, and at 7 and 5 they have many basics under their belt. If it is

survival of the fittest out in the world, I am making them as fit as I can early

on. Hunter also participates in the garden, he already knows basic gardening

basics. Ben is not quite interested in the garden yet. It is part for their

security, I do not want to do everything for them, they need to do for

themselves (as much is appropriate for their ages that is).

Also, I use these skills as therapy and learning games...the grocery store

counting, colors, textures, the laundry pile...light and dark colors, dirty and

less dirty, sorting, putting away. Tonight, the kids mopped the kitchen floor.

It's a rather kinetic approach, in the doing creates pathways for new learning.

This is what I am doing. A confidant familiar with my approach is a good idea, I

would like that.

Summer

Suzanne wrote:

" Wouldn't it be wonderful if SCD people in each locale could partner

up as

child rearing backups in case of crisis? Can we form new tribes of

people who

actually care about one another? Families of Choice? "

Summer,

I have often wondered how to partner with my new friends to mutually

support our children. My former friends sort of blew away with the

wind after I had my son. Because I'm older, some friends had either

never had kids or their children were grown, our common interests were

over. Others had a hard time understanding how a baby could be so much

trouble that his parents could't socialize anymore. They accused me of

being a hysterical new mom, unable to cope with the simple tasks of

raising a baby. So, my new friends are parents of allergic kids and

parents of autistic kids. They GET IT! We are all in the same boat,

and they are great friends. However, I am reluctant to ask them for

help with my child - their lives are as difficult as mine is, and we

are all stretched so thin we could blow away in a strong breeze. How

could they add another child to their families if something happened

to us?

What makes more sense is Communities of Choice, where we live in a

community together and pool resources. Dh and I used to dream of

intentional communities long before we were married. That dream is so

old I had forgotten it til you mentioned it. I wonder ...

In the short term, I would love to have an " SCD Advisor " who is

familiar with Tom's unique digestive problems in a way that his DAN!

doctor never will be. Someone who could advise Tom's guardian on how

to feed him while they learn about his diet if something unexpected

were to happen to us. It would be tragic if all our knowledge about

TOm's needs were to be lost with us.

It's an idea...

Suzanne

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