freepsgal

Okay, I have another challenge. My son, who is almost 10 years old,
has been diagnosed with Aspergers Syndrome. The label doesn't
concern me, nor do most of his behaviors. He's just himself. We
are concerned with a recent behavior of hair pulling and twisting
that has resulted in hair loss. At first he was upset by it but now
he says he doesn't even see the bald patch on his head and he
doesn't think there is a problem. We've also been dealing with some
other medical issues for nearly 5 years now and with my research on
Aspergers, I found some interesting information regarding diet.
I've found some recommendations for a Gluten Free Casein Free diet
for children suffering the same issues my son has been dealing
with. I've also learned some negative information about a
medication he's been on for almost 5 years for constipation. I'd
like to see him off this medication but he's going to have to change
his diet. He is a very particular eater, because of these issues,
and the diet would mean a drastic change to his familiar diet. But
from what I read, the kids who make it to the other end are truly
happy with the changes even if they were resistant to the diet in
the first place.

Now, we're unschoolers. I don't like forcing anything upon my son.
I'd rather discuss it with him and have him leading the way with me
in a supporting role rather than me dragging him along. Has anyone
dealt with a situation like this from an unschooling point of view?
If my son is adamantly against the changes, and he is at this point,
do I just drop it and wait for him to make the choice at a later
time? I'm trying to find compromises but he has a real fear of new
things. The fears are part of his Aspergers which I know would
improve if we could change his diet. How do I approach this?

Beth M.

Michelle/Melbrigða

On 6/24/06, freepsgal <freepsgal@...> wrote:
>

> Okay, I have another challenge. My son, who is almost 10 years old,
> has been diagnosed with Aspergers Syndrome. The label doesn't
> concern me, nor do most of his behaviors. He's just himself. We
> are concerned with a recent behavior of hair pulling and twisting
> that has resulted in hair loss.

Have either of you thought of a really short haircut? Buzz cut that
would be difficult to pull out?

We've also been dealing with some
> other medical issues for nearly 5 years now and with my research on
> Aspergers, I found some interesting information regarding diet.
> I've found some recommendations for a Gluten Free Casein Free diet
> for children suffering the same issues my son has been dealing
> with. I've also learned some negative information about a
> medication he's been on for almost 5 years for constipation.

Could there be a connection between the medication and his behaviour?
What happens if he doesn't take the medication? Your son is old
enough to be able to talk to him about diet and how it is impacting
his health. Heck, Emily was 4 when we talked about how certain
ingredients impacted her health. She's made decisions based on how
she felt to not consume (or consume much of) those ingredients. He
may be willing to change what he eats if he can be guaranteed that
some of his favorites will remain, such as bread, but just not wheat
bread, etc. Have you read Doris Rupp's books? She is the most well
written author on behavioural allergies. Very good information. And
with the age of your son you could easily do these things together.
If he chooses not to follow a specific diet things are not going to
get worse than they are now, right?


--
Michelle
aka Melbrigða
http://eventualknitting.blogspot.com
[email protected] - Homeschooling for the Medieval Recreationist

[email protected]

>>If my son is adamantly against the changes, and he is at this point,do I just drop it and wait for him to make the choice at a later time? I'm trying to find compromises but he has a real fear of new things. The fears are part of his Aspergers which I know would improve if we could change his diet. How do I approach this?>>

Can you make small changes, a little bit at a time? Maybe add or remove just one food and see how he takes it. It's worth playing around with his diet, but you'll want his cooperation.

--
~Mary
http://zenmommasgarden.blogspot.com/

"The miracle is not to walk on water. The miracle is to walk on the
green earth, dwelling deeply in the present moment and feeling truly
alive."
~Thich Nhat Hanh

-------------- Original message ----------------------
From: "freepsgal" <freepsgal@...>
> Okay, I have another challenge. My son, who is almost 10 years old,
> has been diagnosed with Aspergers Syndrome. The label doesn't
> concern me, nor do most of his behaviors. He's just himself. We
> are concerned with a recent behavior of hair pulling and twisting
> that has resulted in hair loss. At first he was upset by it but now
> he says he doesn't even see the bald patch on his head and he
> doesn't think there is a problem. We've also been dealing with some
> other medical issues for nearly 5 years now and with my research on
> Aspergers, I found some interesting information regarding diet.
> I've found some recommendations for a Gluten Free Casein Free diet
> for children suffering the same issues my son has been dealing
> with. I've also learned some negative information about a
> medication he's been on for almost 5 years for constipation. I'd
> like to see him off this medication but he's going to have to change
> his diet. He is a very particular eater, because of these issues,
> and the diet would mean a drastic change to his familiar diet. But
> from what I read, the kids who make it to the other end are truly
> happy with the changes even if they were resistant to the diet in
> the first place.
>
> Now, we're unschoolers. I don't like forcing anything upon my son.
> I'd rather discuss it with him and have him leading the way with me
> in a supporting role rather than me dragging him along. Has anyone
> dealt with a situation like this from an unschooling point of view?
> If my son is adamantly against the changes, and he is at this point,
> do I just drop it and wait for him to make the choice at a later
> time? I'm trying to find compromises but he has a real fear of new
> things. The fears are part of his Aspergers which I know would
> improve if we could change his diet. How do I approach this?
>
> Beth M.
>
>
>
>

Melissa

I don't know if the diet will help your son or not. I have a son with
aspergers, a daughter with autism, one with adhd, one with SAD. We
tried the diet. It didn't help any one of them. From what I've
personally witnessed, it doesn't help most children. Some of the
studies that the articles are based on were flawed for several
reasons, primarily to me is that the number of participants were low,
less than ten in most cases, and don't reflect the overall population
who have a spectrum disorder. Some of the studies aren't experiments
but merely presentation of epidemiological observations, and some in
turn were affected by the scientist knowing who was on which diet
(particularly the one from 1994, i don't recall the name, sorry)

I only say all this because I hate for anyone to go into something
like this *knowing* that it will *cure* their child. In my work in
the autism society, I've seen dozens of families start this diet,
only to have their hopes crushed when little changes. I've seen a few
families whom have been helped, but it's difficult to say why it
worked, when they start a couple of meds, new therapies, and change
the way they parent due to diagnosis all at the same time. If you
plan on changing any drugs he is taking, I would suggest spacing the
change by at least six weeks.

If you want to do this diet, be prepared to find lots of alternatives
that are appealing. You'll need to do the diet for six months to a
year, because it takes at least 28 days for all proteins to clear the
system, and a few more months for any damage to be repaired. We did
the gluten-free diet before we were unschoolers, it was difficult
because of me. We do have several special diets, ironically, years
after our gluten free diet we have two younger children with celiac
disease ;-) So we know where we are going there. It's tougher than
you think, be sure to join a celiac support group, because wheat is
soo hidden, toothpaste, shampoo, playdough, fingerpaints, all of
those are things that make our boys very sick. My daughter with
autism is on a corn free diet, which we found oddly, while trying to
abstain from wheat. Totally reacts to that. She's a little tougher,
but probably because she's very very developmentally delayed. The
boys didn't have a choice about the diet. But I work hard to make
sure there are alternatives, so I just say "That has wheat in it, let
me get you some wheat-free". Breanna has been off of corn for maybe
eighteen months? I have let her have some of the products every now
and then, and she can feel the change. Sometimes she likes it, and I
have to bite my tongue. But most of the time, she's very
uncomfortable. And I'm starting to see her think about it. When I
point out it has corn in it, she'll choose something else (usually
after throwing one of her tantrums, which I don't blame her, it
sucks, corn syrup is in EVERYTHING good!)

HOpe all this is okay, I'm probably missing vital stuff or sounding
like a prig. DH will be back today, and I am so glad. A full week
with little help is a little crazy, and *I* am totally crazy. LMK if
you have any other questions, or if I need to rephrase anything.
Melissa
Mom to Josh (11), Breanna (8), Emily (7), Rachel (6), Sam (4), Dan
(2), and Avari Rose

share our lives at
http://360.yahoo.com/multimomma



On Jun 24, 2006, at 10:08 AM, freepsgal wrote:

> Okay, I have another challenge. My son, who is almost 10 years old,
> has been diagnosed with Aspergers Syndrome. The label doesn't
> concern me, nor do most of his behaviors. He's just himself. We
> are concerned with a recent behavior of hair pulling and twisting
> that has resulted in hair loss. At first he was upset by it but now
> he says he doesn't even see the bald patch on his head and he
> doesn't think there is a problem. We've also been dealing with some
> other medical issues for nearly 5 years now and with my research on
> Aspergers, I found some interesting information regarding diet.
> I've found some recommendations for a Gluten Free Casein Free diet
> for children suffering the same issues my son has been dealing
> with. I've also learned some negative information about a
> medication he's been on for almost 5 years for constipation. I'd
> like to see him off this medication but he's going to have to change
> his diet. He is a very particular eater, because of these issues,
> and the diet would mean a drastic change to his familiar diet. But
> from what I read, the kids who make it to the other end are truly
> happy with the changes even if they were resistant to the diet in
> the first place.
>
> Now, we're unschoolers. I don't like forcing anything upon my son.
> I'd rather discuss it with him and have him leading the way with me
> in a supporting role rather than me dragging him along. Has anyone
> dealt with a situation like this from an unschooling point of view?
> If my son is adamantly against the changes, and he is at this point,
> do I just drop it and wait for him to make the choice at a later
> time? I'm trying to find compromises but he has a real fear of new
> things. The fears are part of his Aspergers which I know would
> improve if we could change his diet. How do I approach this?
>
> Beth M.
>
>
>



[Non-text portions of this message have been removed]

[email protected]

In a message dated 6/24/2006 11:10:29 A.M. Eastern Daylight Time,
freepsgal@... writes:

I found some interesting information regarding diet.
I've found some recommendations for a Gluten Free Casein Free diet



Beth, I am going to suggest the food enzymes created to replace the GFCF
diet before you try the diet. My kids have been on them since Nov. and I have
seen remarkable progress. You can get info at _www.enzymestuff.com_
(http://www.enzymestuff.com) and some at _www.houstonni.com_
(http://www.houstonni.com) . I would be happy to answer any questions off-list.

The GFCF diet is hard and expensive and often takes months before you notice
if it is working or not. I highly recommending trying the enzyme approach
first.

But, I will say that diet is a big issue in my home. We have gone off
artificial colors and we are working towards removing most other artificials.
Unfortunately, some kids just don't tolerate this stuff well. It is hard
balancing out food freedom and problem foods, but with my kids, it makes such a
huge difference in our entire family and unschooling life! Sometimes I handle
it better than others and I just keep trying to do my best.

I keep lots of good alternatives around, do a lot of talking, and try to
keep safe food free and easily accessed.

Leslie in SC


[Non-text portions of this message have been removed]

Tina Layne

Speaking of synthetics and artificial colors and flavors, our family follows the Feingold Diet (www.feingold.org) which eliminates all of those things. My oldest dd and my ds are the targest, but we've all seen improvements. Most members have children with AS, ADD/ADHD, autism, and other differences. We all have seen great improvements on the program.

Take a few minutes to look into it. It's well worth the time investigating, and the membership fees.

Tina
Hawaii

Leslie530@... wrote:

In a message dated 6/24/2006 11:10:29 A.M. Eastern Daylight Time,
freepsgal@... writes:

I found some interesting information regarding diet.
I've found some recommendations for a Gluten Free Casein Free diet

Beth, I am going to suggest the food enzymes created to replace the GFCF
diet before you try the diet. My kids have been on them since Nov. and I have
seen remarkable progress. You can get info at _www.enzymestuff.com_
(http://www.enzymestuff.com) and some at _www.houstonni.com_
(http://www.houstonni.com) . I would be happy to answer any questions off-list.

The GFCF diet is hard and expensive and often takes months before you notice
if it is working or not. I highly recommending trying the enzyme approach
first.

But, I will say that diet is a big issue in my home. We have gone off
artificial colors and we are working towards removing most other artificials.
Unfortunately, some kids just don't tolerate this stuff well. It is hard
balancing out food freedom and problem foods, but with my kids, it makes such a
huge difference in our entire family and unschooling life! Sometimes I handle
it better than others and I just keep trying to do my best.

I keep lots of good alternatives around, do a lot of talking, and try to
keep safe food free and easily accessed.

Leslie in SC

[Non-text portions of this message have been removed]





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[Non-text portions of this message have been removed]

freepsgal

I appreciate all the responses so far. Here is some more
information.

The medication I mentioned is Miralax. He's been on it for almost 5
years. It's an osmotic laxative that has a suggestion to use it for
2 weeks unless prescribed longer by a doctor. 5 years?? And I just
found out on the main website for the medication that it isn't even
approved to be used in children. The doctors at Kaiser don't seem
concerned in the least about figuring out WHY my son suffers from
chronic constipation. They tell me he'll outgrow this problem
eventually. Every time I've lowered the daily doseage to attempt to
get him off of it, he gets a stool impaction and requires an enema.
To say this has been a long unpleasant ordeal is quite an
understatement.

My son's diet is mostly carbs and dairy. I'm fairly positive his
bowel issues are because of his diet but he doesn't care because as
long as he's on the Miralax, he feels like it's okay to eat whatever
he wants. I have talked to him about this but he'd rather eat what
he wants and take the Miralax than change his diet. My DH thinks we
need to implement changes. I'm caught in the middle, not sure
what's best. I do not know if diet changes would make this problem
better. I'm only making a guess.

As for the hair pulling, we have suggested a shorter hair cut but
Jeffrey is definitely against that solution. He likes the feel of
his hair long, on his neck and over his ears.

Beth M.

eriksmama2001

Beth, I don't usually post here; but we radically unschool and have
dietary issues which we handle with full consent of our son, who is
5. It is much harder to implement than to have always done it this
way, I imagine. And it is difficult to have a diet free of foods
which create behavioral concerns for the whole family. I would say
that our son was about age 3 when he could identify which foods had
artificial colors, dairy and protein and chose with awareness (not
requiring agreement or approval on my part though). His choices have
been his to make.

However, we do discuss our observations and our concerns regarding
his behavior which directly effects us; and we discuss
correlations/patterns associated with specific food ingredients. It
is easier to see correlations since our diet is generally free of
dairy, soy, wheat, high fructose corn syrup, artificial colors,
flavors and preservatives and high salicylate foods.....usually.

We basically follow the Feingold Diet and see dramatic correllations
between the food ingredients and his sleep, physical aggression,
vocalizations, ability to negotiate and consider other's personal
boundaries and needs, and hyperactive/restlessness. The most
important aspect is providing preferred substitutions, NOT
eliminating choice. This has taken years of reading labels of
ingredients on everything that comes into our home to find hundreds
of foods that are free of additives and taste wonderful to our
individual tastes. Outside of our home, we bring our favorites, we
consume the culprit foods, we find substitutes and we delay
consumption, depending upon individual preferences.

I have heard incredible benefits about the enzymes also. And we are
considering that alternative ourselves. We also have added
magnesium, cod liver oil, and coconut oil as important dietary
supplements, which are often associated with sensory integration
behaviors. Again, these are utilized with ds's preferences (flavors-
natural, consumption, refusal, etc). And we use additive free
multivitamin supplements for good measure.

The intervention that has helped our son's dietary tolerance the
most has been classical homeopathy. As an infant, there were many
MORE foods that we avoided due to gastric issues associated with
them. There are also some "food allergy homeopathics" which are used
at the time of consuming a culprit food. For instance there is one
for wheat, dairy, corn, etc. These are taken when you anticipate, or
ate, the food that causes symptoms. This is acute homeopathy, which
is different than classical homeopathy. But, dh and ds have had
significant improvement of many different allergy issues with
classical homeopathy.

Classical homeopathy would address the hair pulling, twisting,
constipation, carb craving, etc. I highly recommend considering this
alternative in conjunction with making gradual dietary changes and
facilitating awareness about food and behavior, with your son's
agreement, of course. I suspect that the sensory seeking and
repetitive behaviors are associated with dairy. Our son's sensory
seeking behaviors certainly are directly associated with dairy
consumption frequency and quantity. He becomes physically aggressive
about one hour after consumption and it lasts for 1-6 hours,
depending upon amount consumed.

From what I understand, it takes about 3-10 days to see significant
behavioral changes after eliminating dairy. And then it is easier to
see the effects/benefits. Some people see changes in only one or two
days of a dairy free diet. However, dairy (including casein and
whey) is hard to eliminate. Wheat is harder to eliminate; and corn
syrup is the hardest to eliminate, ime. But, they are not hard to
avoid once we are aware. And our son's willingness to avoid
ingredients is directly related to how much he has recently
consumed. Not from a taste pov, but from an cognitive awareness of
cause/effect pov.

A friend's 13-year old felt so much better on the Feingold Diet that
he chooses to continue it after willingly trying it for one week.
You might discuss that type of trial run with your son. But, you'd
need to find the substitute foods first and not expose him to
temptation by eating stuff in front of him for the duration. Our
whole family chooses a similar diet for convienence and support.

So, I'd tell your dh, as soon as *he* joins in, ds would probably be
more willing to give it a go. We use EarthFare for most packaged,
processed and fresh foods free of additives. They have nitrate and
nitrite free bacon for instance. I believe that Whole Foods has a
similar selection. Check out www.Feingold.org for more information.
I believe it is well worth the effort.

Pat

freepsgal

Pat, thank you for the very detailed post. My son and I have been
talking and he's warming up to the ideas. It's just taking patient
discussion to help him see the 'middle' areas he often overlooks.
He's an all-or-nothing type personality so his initial thoughts are
either that he gets to eat what he wants or he can't have any of the
foods he likes. We're going to work on finding acceptable
alternatives before we make any drastic changes. I'll take a look at
the Feingold diet too. thanks!! :)

Beth M.

Deb Lewis

***We are concerned with a recent behavior of hair pulling and twisting
that has resulted in hair loss. ***

Maybe since he knows now that he can pull his hair right out, he'll
modify his twisting in time, to reduce the chances of hair loss.
There's nothing wrong with hair twisting. He probably isn't interested
in really pulling his hair out. I'd remain calm and see how he handles
it.

***I found some interesting information regarding diet. ***

I'm personally irked by these threads about diet and behavior or diet as
a cure for a wispy diagnosis. I know some people shouldn't eat certain
things but the majority of unschoolers are not people with special
dietary needs. I'm skeptical. Omnivorous humans have been eating
fluctuating diets for thousands and thousands and thousands of years.
Now I hope there won't be a flood of mail about how this or that kid or
someone would DIE if they ate this or that something. The deal is, most
people can eat without fear of death and I get grumpy when the list turns
into a fear of foods list instead of an unschooling list.

If your son has been on a laxative for five years, how do you know that
with time, off the meds and in a calm and stress free house, his body
wouldn't find it's right balance? What, in your mind, makes the
largely anecdotal promise of better health from a gluten free, casein
free diet more valid that the evidence unschoolers have been giving for
years and years about peaceful home life and calm mothers, freedom to
choose and varied diet?

***I'd like to see him off this medication but he's going to have to
change
his diet. ***

Why is he "going to have to" change his diet? How do you even know how
his body is going to react off the meds? How do you even know if this
new diet will help him?

If you're concerned about constipation maybe adding more fiber to the
things he already likes to eat will be enough. Maybe adding a vitamin
supplement with magnesium will be enough. Maybe more orange juice would
be enough. Maybe going for a walk with him every morning would be
enough. None of those things would be things he'd "have to" do, just
ideas if, after time off the meds, he'd like to try ways to get more
comfortable.

How much pressure are you willing to put on him or how much force are you
willing to subject him to, on the vague promise things will improve?
That's my caution. I'd start with a calm mind, a peaceful house, a
helpful, willing attitude, suggestions if he's having problems and a lot
of time and freedom and help (not force) for him to come to his own terms
with whatever his personal issues are.

Deb Lewis

Deb Lewis

***He is a very particular eater, because of these issues,
and the diet would mean a drastic change to his familiar diet. But
from what I read, the kids who make it to the other end are truly
happy with the changes even if they were resistant to the diet in
the first place. ***

Are you looking for permission?

You can do what you want. Lots and lots of people would say you'd be
doing the right thing to force your son to accept the diet you think he
should be eating.

People released from kidnappers are sympathetic to the kidnappers cause
even though they didn't want to be kidnapped.
People who graduate from school believe school was necessary even though
they were miserable there.

You can eventually convince a kid that his suffering or misery is good
for him.

If you change his diet and he doesn't want to and if you fight with him
about it sometimes or get frustrated with him about it sometimes and in
the end the diet doesn't help enough to warrant the fight or frustration
you run the risk of having altered your relationship and lost some of
your credibility. That's the danger of taking his choice away. That
wouldn't be good for him or for you.

Deb Lewis

Joanne

"That's my caution. I'd start with a calm mind, a peaceful house, a
helpful, willing attitude, suggestions if he's having problems and a
lot of time and freedom and help (not force) for him to come to his
own terms with whatever his personal issues are."

Our experince has rung true for what Deb is suggesting. Our son has
a traditional diagnosis given by various traditional sources and
various diets were suggested. Trying to implement them brought too
much stress and conflict into our family. We, too, have found that
freedom and time and support are by far the greatest gifts that has
benefitted our son.

Perhaps those still interested in discussing diets could do so off
line so we could focus back to unschooling basics.

Respectfully,
Joanne O'Neill

Vijay Owens

Actually, this is not true in many cases. As recently as 2-3 years ago,
DH had to give up his Van Dyke b/c he couldn't stop pulling the hairs
out and (sorry) eating them. It's called trichotillomania (sp?) and is
a form of OCD I believe. Even being 30ish years old and knowing that
pulling those hairs out made his beard look patchy and sparse couldn't
stop him. He eventually had to just go clean-shaven and has been so
ever since. He also has to keep his head hair short, though that's also
because it just looks better that way (he has a really big head!).

This may not be the phenomenon that you are dealing with, but if he's
pulling hard enough to pull the hair out by the root it may be a strong
compulsion that he has trouble fighting. It might not be as simple as
wanting to twirl and accidentally pulling it out and being able to stop
doing it at will.

-Vijay


On Jun 25, 2006, at 11:41 AM, Deb Lewis wrote:

> ***We are concerned with a recent behavior of hair pulling and twisting
> that has resulted in hair loss. ***
>
> Maybe since he knows now that he can pull his hair right out, he'll
> modify his twisting in time, to reduce the chances of hair loss.
> There's nothing wrong with hair twisting. He probably isn't interested
> in really pulling his hair out. I'd remain calm and see how he handles
> it.
>
>

[Non-text portions of this message have been removed]

freepsgal

Oh Deb, if it were that easy, I would have done it long ago. He
doesn't eat much fiber because he doesn't like the things that fiber
is found in. The problem is that we do let him make his own choices
and he doesn't eat or drink the things that make his body function
normally. I didn't mean for this thread to turn into a
diet/behavior discussion, but how to address such needs in an
unschooling atmosphere. Jeffrey knows all too well what it feels
like to be impacted. It's painful, and there is a possibility of
toxins leaking out and poisoning the body. Some people have gotten
very sick from this and some have even died of an impaction causing
bowels to rupture.

I want to everything to be laid back, non-stressful, happy and
average. Believe me. But the question is what do we do when a body
just doesn't act natural by itself? I'm sure that's very difficult
for you to understand but I'm living with it on a daily basis.

As for the hair pulling, look up trichotillomania. That's a real
disorder. Fortunately, I don't think my son suffers from it
specifically, but rather as part of his autistic behaviors.

I'm all for letting people live natually the way they are meant to
be, but not looking into medical solutions when the situation
warrants it is negligent, don't you think? I'm simply looking into
options because for the past 5 years we've done nothing except give
him the Miralax. We have followed his lead on foods, never forcing
him to eat things he doesn't want to eat. I specifically find the
foods he wants, like if we want to eat out and everyone wants Wendys
but he wants McDonald's fries only because he hates everything
else. I totally understand and never make him feel bad for him
choosing other foods than we eat. But I'm watching his involuntary
behaviors such as hand flapping, hand smelling, pacing, twisting &
pulling hair, and insomnia gradually become more of a problem for
him. If changing his diet might help those things, why wouldn't I
want to try it? Obviously life as it is now isn't working out well
for him. So what would you propose I do? Seriously?

Beth M.

freepsgal

> Are you looking for permission?

*LOL* Geez Deb. It's a good thing I've learned to not take these
kinds of responses personally. No, I'm not looking for permission.
I'm looking for suggestions on how to approach this type of situation
within a radical unschooling family. I figured asking this list would
make the most sense. I was hoping someone with experience could help,
not someone who has no clue what we're living with making comparisons
to victims of kidnappers. Mercy me! *laugh*

Beth M.

freepsgal

> Perhaps those still interested in discussing diets could do so off
> line so we could focus back to unschooling basics.
>
> Respectfully,
> Joanne O'Neill

Okay, but please realize that I posted my situation because I need
to know how to deal with it from an unschooling lifestyle. No, it's
not about academics. It's about health, life and family. Are you
suggesting those things are not included in the basics of
unschooling?

Do you think that families with special needs children cannot
unschool radically because if they have to make any decisions for
the child at all, then they might as well try not to unschool at
all? I guess what I'm really worried about is taking my son off the
medication, against doctors advice and letting my son continue to
make the choices that are making him geniunely sick. If he gets
really sick or even dies, can I go to jail for it? Won't the court
system say it's my responsibility to make sure he does the things
that keep him healthy? And no, I'm not overreacting. We actually
know someone who died from impacted stool rupturing his bowels, but
he was an adult so no one was blamed except him.

Beth M.

joanne

Not at all. I think any and all topics should be posted. Radical unschooling encompasses all aspects of life. My comment was that when the discussion moves from unschooling issues to diet restrictions in particular I feel that we have left the unschooling arena and when that occurs then it would probably be best continued that particular topic off-line privately e-mailing.

I also have a special needs son (diagnosed PDD-NOS on the autism spectrum with ADHD). You might also find help and support on the SHINE list. I am growing as our family learns more and more about unschooling through trial and error, reading and also posting and reviewing discussions on groups like these.

We are at a place in our journey now in our family where we do a lot of talking. We consider each member of the family a member of the team. We are trying to deschool and also detox ourselves from past messages power and control. It is a wonderful and exciting journey with moments of joy and moments of frustration.

I think exploring unschooling will help you and your family find what works best for you and your family. The only thing I would caution you about is that we tried to make too many changes at the same time in the beginning of our exploration. This resulted in us feeling overwhelmed and questioning the whole unschooling paradigm instead of the way in which we were trying to make the transition :)

I am not a medical doctor and would not presume to advise you regarding impacted stool. If you are unsure about what your current doctor is telling you, how about seeking a second professional opinion? There are holistic doctors as well. You may need to travel further to see one and your insurance may not pay for them but it is worth looking into if you want a more holistic perspective.

Personally, I would not take my child off his medication if it was against his doctor's advice unless I had another doctor that I was going to replace my previous doctor with. But that in it of itself is a debate that should be pursued privately off line. You may do so with me if you would like to do so.

Joanne O'Neill
ds: age 5, almost 6
Lake Carmel, NY

----- Original Message -----
From: freepsgal
To: [email protected]
Sent: Sunday, June 25, 2006 1:37 PM
Subject: [unschoolingbasics] Re: Unschooling and diet/medical issues


> Perhaps those still interested in discussing diets could do so off
> line so we could focus back to unschooling basics.
>
> Respectfully,
> Joanne O'Neill

Okay, but please realize that I posted my situation because I need
to know how to deal with it from an unschooling lifestyle. No, it's
not about academics. It's about health, life and family. Are you
suggesting those things are not included in the basics of
unschooling?

Do you think that families with special needs children cannot
unschool radically because if they have to make any decisions for
the child at all, then they might as well try not to unschool at
all? I guess what I'm really worried about is taking my son off the
medication, against doctors advice and letting my son continue to
make the choices that are making him geniunely sick. If he gets
really sick or even dies, can I go to jail for it? Won't the court
system say it's my responsibility to make sure he does the things
that keep him healthy? And no, I'm not overreacting. We actually
know someone who died from impacted stool rupturing his bowels, but
he was an adult so no one was blamed except him.

Beth M.





[Non-text portions of this message have been removed]

Michelle/Melbrigða

On 6/25/06, Vijay Owens <vijayowens@...> wrote:
>
> Actually, this is not true in many cases. As recently as 2-3 years ago,
> DH had to give up his Van Dyke b/c he couldn't stop pulling the hairs
> out and (sorry) eating them. It's called trichotillomania (sp?) and is
> a form of OCD I believe. Even being 30ish years old and knowing that
> pulling those hairs out made his beard look patchy and sparse couldn't
> stop him. He eventually had to just go clean-shaven and has been so
> ever since. He also has to keep his head hair short, though that's also
> because it just looks better that way (he has a really big head!).

You are talking about an adult and it sounds as though he chose to do
these things on his own. Did you force him to shave and crop his hair
or did he do these for himself as he didn't like have a patchy beard
and thought he looked better with short hair? The difference is that
we are talking about a child and that child learning to trust the
adults/parents in his life. Trust is not going to be gained by a
parent forcing a child to do things because the adults think that the
changes are better for them.




--
Michelle
aka Melbrigða
http://eventualknitting.blogspot.com
[email protected] - Homeschooling for the Medieval Recreationist

Ren Allen

"Do you think that families with special needs children cannot
unschool radically because if they have to make any decisions for
the child at all, then they might as well try not to unschool at
all?"


Not at all!
Unschooling isn't just about freedom, as we discussed before. Freedom
without awareness is just plain crazy. Awareness dictates that we are
in tune with our children and obviously concerned for safety and health.

If my child had diabetes, I wouldn't just leave the M&M jar sitting
out like I do now. I'd be damn sure I had foods they liked that they
could safely eat though. It's about respecting the desires of the
individual within the very REAL limitations that life can throw at us
sometimes.

I think diet discussions are very relevant to this list. Finding ways
to address health concerns while still respecting the autonomy of the
individual are on par with unschooling.

I am NOT a fan of diets, nor do I think an entire family needs to be
on one just because an individual has real health issues. At the same
time, I wouldn't want to eat foods that would be problematic for one
child right in front of them. There are creative ways to meet the
needs of all members.

Personally, I trust my own inner knowledge and guidance more than any
doctor. I use doctors as consultants and do my OWN research to make
decisions. I would certainly trust my own research on the medication
over what ANY damn doctor told me and do whatever it took to get my
child off of it, while finding alternative ways to keep them healthy.

Constipation is no joke, but at what point do you decide that he can't
be medicated for his entire life and try to find better solutions? I
would want to understand the health issue, not just medicate it and
ignore it. There are a number of ways to help children get healthy
food, without being controlling. Monkey platters disappear quite
readily around here and my children happily eat a variety of foods.
We can discuss many solutions to the desire for healthier eating,
without reverting to mainstream methods that lack respect for the child.

Ren
learninginfreedom.com

Ren Allen

"I'm looking for suggestions on how to approach this type of situation
within a radical unschooling family."

And that's what the list is for.

I think you'll hear some frustration from old-timers when a bunch of
posts come through to try this or that restrictive diet, rather than
working within his very real medical issues and try to find
NON-restrictive ways to help you all.

Ren
learninginfreedom.com

Ren Allen

"If changing his diet might help those things, why wouldn't I
want to try it? Obviously life as it is now isn't working out well
for him. So what would you propose I do? Seriously?"

I think these are really great questions!

Obviously, when our children have very real issues and problems, we
try to look at a variety of solutions. Diet may be one of those issues.

I think at this point, maybe various list members could come up with
yummy, interesting foods that you could prepare and offer up that have
more fiber. I personally love smoothies for this. My kids ADORE them
and you can even slip great supplements in that they won't taste.

We blend frozen fruit (raspberries, blackberries and strawberries are
faves) with 1/2 can frozen OJ concentrate and some milk. They're thick
and really yummy. Some banana adds a great flavor too.

Some delicious and healthful foods might address the whole
constipation issue, but I really think that most of his behaviors are
something you have to accept as part of HIM. The more we can meet our
children where they're at, the more peaceful things can be. Instead of
seeing his behavior as something that needs changing, maybe you can
focus more on how it's all part of the package, part of his beauty?

I realize that some of it might be really hard. If there are areas
frustrating him, of course you want to find ways to ease his
frustration. Some of it is simply part of his personal development and
learning process.

Ren
learninginfreedom.com

Tina Layne

"Diet" isn't always the right word, either, especially in the case of all of us wanting to give freedom to our family instead of dictating rules and restrictions. "Lifestyle" or "meal plan" might be better words to use than "diet".

For my family, I don't dictate a specific diet that restricts foods from them. We follow a meal plan that coincides with an additive-free lifestyle, and we don't restrict any particular food- just certain brands. The new lifestyle was also began over a year ago with everyone's full knowledge and agreement after much discussion.

For instance, we don't buy Oreos. Instead we buy Newman-O's. All of us enjoy the flavor as much and in some cases more than the Nabisco brands of the same type of cookies (choc oreos, gingersnaps, and choc mints), so there has been nothing lost or restricted. I know all of us would have been upset to lose certain food items, but none of us have complained about the brands we have switched to so that we could keep our favorite foods.

Tina
Hawaii

__________________________________________________
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[Non-text portions of this message have been removed]

joanne

Just some thoughts that came up for me around different word choices. Diet has many definitions. I think the one that I was reacting to is the definition :to eat or drink in a prescribed regimen. The Feingold Diet I believe fits into that definition. It was the discussion of the use of that specific diet in particular that I was suggesting be done off line. Or perhaps it is because of the many and exhausting conversations I have had with some of the people I have met in an autism support group locally who use that diet (although none are unschoolers). We ended up doing our own reading and experimenting and didn't feel it did enough to warrant all the struggles. That was the right decision for our family.

I have been so distanced from my own inner knowledge and guidance that I still like working with medical professionals as part of my medical team.
When I have gone off some of my medications at different times I needed to do so under the advise of a physician not only because of having been on them so long and at such a high dose but also because on those particular medications it can cause complications to stop taking them too quickly. I only learned that because I had discontinued medications before on my own that I didn't realize had to be tapered and it caused me problems.

In our household there are just too many different and complicated medical conditions for me to research them all well in addition to keep up to date on the new research . I select my doctors (and the ones for my son) carefully and if they are willing to develop a relationship with me, answer any and all of my questions, treat me with respect, be open to exploring new ideas, try new things (including trying to be taken off a previous medication) then I remain with them. If not, I move on until I can find one who will.

Joanne O'Neill
Lake Carmel, NY


[Non-text portions of this message have been removed]

Vijay Owens

Huh? Where in my post did I suggest that the child should be forced to
do anything? I was merely commenting that these compulsions are very
strong, and the child was probably not pulling their hair out
accidentally as a side-effect of twirling it.

Please respond to my actual words in the future, and do not make me out
to be the kind of person who would forcibly shave a child's head. That
is very offensive to me.

-Vijay


On Jun 25, 2006, at 3:42 PM, Michelle/Melbrigða wrote:

> On 6/25/06, Vijay Owens <vijayowens@...> wrote:
> >
> > Actually, this is not true in many cases. As recently as 2-3 years
> ago,
> > DH had to give up his Van Dyke b/c he couldn't stop pulling the
> hairs
> > out and (sorry) eating them. It's called trichotillomania (sp?) and
> is
> > a form of OCD I believe. Even being 30ish years old and knowing that
> > pulling those hairs out made his beard look patchy and sparse
> couldn't
> > stop him. He eventually had to just go clean-shaven and has been so
> > ever since. He also has to keep his head hair short, though that's
> also
> > because it just looks better that way (he has a really big head!).
>
> You are talking about an adult and it sounds as though he chose to do
> these things on his own. Did you force him to shave and crop his hair
> or did he do these for himself as he didn't like have a patchy beard
> and thought he looked better with short hair? The difference is that
> we are talking about a child and that child learning to trust the
> adults/parents in his life. Trust is not going to be gained by a
> parent forcing a child to do things because the adults think that the
> changes are better for them.
>
> --
> Michelle
> aka Melbrigða
> http://eventualknitting.blogspot.com
> [email protected] - Homeschooling for the Medieval Recreationist
>


[Non-text portions of this message have been removed]

Deb Lewis

***He doesn't eat much fiber because he doesn't like the things that
fiber
is found in. ***

What kinds of things does he like? What do you make for him? In a
typical day, what will he eat? If you give us some info we can help you
find ways of offering higher fiber choices along with what he usually
likes.

***The problem is that we do let him make his own choices
and he doesn't eat or drink the things that make his body function
normally. ***

Five years ago you put him on medication. He's not in the same place he
was in five years ago and you are a different mom now, these five years
later. You can give him information about what might help him feel
better. You can provide a variety of foods. You can talk about what the
medication did for him and what foods might do that same thing without
the possibility of side effects.

The problem is not that he has choice. The problem is constipation. How
do you address that problem? Taking away his choice might result in
added stress and stress is one factor in ill health.

***I'm sure that's very difficult
for you to understand but I'm living with it on a daily basis.***

Don't be too sure. My son has debilitating psoriatic arthritis.

***As for the hair pulling, look up trichotillomania. That's a real
disorder. Fortunately, I don't think my son suffers from it
specifically, but rather as part of his autistic behaviors.***

And lots and lots of kids twist and pull their hair and don't have
disorders. Lot's and lots of kids would figure out they don't want to
pull out their hair and they would modify their behavior themselves if
they weren't made to feel like everything they did was a compulsion or
symptom of some disorder they have no control over.

***I'm simply looking into
options because for the past 5 years we've done nothing except give
him the Miralax. ***

Do you really mean that for five years you had a child with chronic
constipation and did *nothing* but give him medicine?

He should have been living in a house were people made good food choices,
where people talked about what foods made them feel better, what foods
have natural fiber. What foods contribute to constipation. He should
have been provided with information all along about his body and health.
All kids should be. That's not the same as being made to eat what mom
wants you to eat, it means having good information and good foods
available as part of a wide choice of foods.

If you make pancakes you can add bran. Same with waffles. You can make
higher fiber bread. You an add fiber to muffins, cake, cookies.

***But I'm watching his involuntary
behaviors such as hand flapping, hand smelling, pacing, twisting &
pulling hair, and insomnia gradually become more of a problem for
him. ***

So you believe the diet is a factor here as well? Not just with the
constipation?

What do you do when he flaps? Have you had the same approach as with the
food? Have you never said, "Flap at home or in the car but when you're
in the store DONT because you're bothering people?" Who is offended
by his had smelling, or do you mean he's smelling other people's hands?
Have you just said "Stop that." If he was poking someone with a stick
would you not say, STOP THAT?

So, maybe you've said stop that and he can't stop because he can't help
himself, then don't take him places where his hand flapping is going to
be a problem and just be honest with him about it. Go somewhere else
where people can flap if they want to. Hell, bring him to my house,
we're all hand flappers. Go dancing.

I don't see a big issue with pacing. Lots of people pace. I pace. But
if it's a body motion thing then maybe set up a swing for him or a
trampoline or a bungee jump so he can fulfill his body's requirements for
motion in a way that won't disturb others.

Insomnia is a very common thing in young boys especially boys approaching
puberty. I wouldn't be so fast to call that a symptom of a wider
problem. Lot's of people have insomnia without it being a big deal.
Insomnia is pretty prevalent in my family and no one's life has been
ruined over it.

***If changing his diet might help those things, why wouldn't I
want to try it?***

If you want to then do it. You don't have to justify it in an
unschooling way. If you want unschooling answers then be willing to
calm down and consider them. Unschooling will require you to trust your
kid and if you can't (for whatever reason, health reasons, anything) then
you can't. You don't owe us an explanation.

A lot of what you're talking about is fear. Fear of what will happen
when he goes off the meds. Fear of what will happen if you don't impose
some new diet. So from the start we're not talking about reality but
about your fear of what might happen if you don't do this new diet. But
death or this new diet are not the only choices and it seems like you're
not remembering that.

***Obviously life as it is now isn't working out well
for him. So what would you propose I do? Seriously?***

I would have proposed a lot of conversation and modeling of food choices
these last five years, but we're going forward now and not backward. So
I would start now to talk about why he gets constipated and why you feel
he shouldn't be on that medication anymore and ask HIM what he'd like to
do to address those two concerns. I'd start now making higher fiber
food choices myself and offering plenty of higher fiber snacks and
goodies and dinner choices and experimenting with his favorite cookie
recipes.

Seriously I'd try six million things before I'd force him to change his
diet. Ren said if she had a diabetic child she wouldn't leave the M&M
bowl out. My niece was diagnosed with diabetes when she was eleven and
she's twenty one now. She's completely insulin dependant. She eats
M&M's and in fact her doctor told her parents NOT to restrict her diet,
but to give her good information and free choice and to encourage her to
manage her insulin to meet her body's needs no matter what she was
eating. People dying from lung cancer sometimes don't quit smoking.
People critically ill with heart disease sometimes don't quit eating
bacon. If these people find a change so hard to make they're risking
death what makes you believe you can force a change on your child without
it having wider complications, itself?

Have you talked with him? Start from the idea he wants to be healthy and
then give him good information about what can help him feel good.
He will make some bad choices I'm sure. We all do. He will make better
choices when he knows better. All along he can get help from you.

You seem to see this as all or nothing. Either he stays on this
medication or he goes off. But can he try a different kind? Can he use
an over the counter stool softener? Can he take a magnesium supplement
or chew some vitamin C?

Is he willing to try your diet or would he be willing to drink a smoothie
in the morning? There are a lot of choices but they all start with you
providing him good information and a good example.

Deb Lewis

[Non-text portions of this message have been removed]

elizabeth roberts

Beth,

Here are two other lists that you might not be aware of: Anne Ohman's ShineWithUnschooling@... and mine UnschoolingSpecialNeeds@... .

Beth R.


Sing, Dance, Laugh...LOVE!

---------------------------------
Yahoo! Groups gets better. Check out the new email design. Plus there’s much more to come.

[Non-text portions of this message have been removed]

Deb Lewis

***I'm looking for suggestions on how to approach this type of situation
within a radical unschooling family. ***

Within a radical unschooling family the approach won't be taking the
child's choice away.

But maybe you can tell him all the reasons you think it would be a good
idea to try the diet and maybe he'll agree with you. Or maybe you can
find some other thing to try that he can feel good about.

***I was hoping someone with experience could help,
not someone who has no clue what we're living with making comparisons
to victims of kidnappers. ***

You're only in control of what you post, not in what or who posts in
reply. That's not how it works.

I have years of unschooling experience and experience with a child who
has specific medical issues AND whose medical problems have been touted
as being helped by various special diets or other treatments. I have
experience living happily and peacefully with a kid who has total and
complete control over what he eats.

I have experience with a kid who twisted and pulled his hair, who paced,
who flapped and who has insomnia.

Anything else?

Deb Lewis

freepsgal

> We can discuss many solutions to the desire for healthier eating,
> without reverting to mainstream methods that lack respect for the
> child.
> Ren

Thank you Ren! Your interpretation of my situation is exactly what
I meant! I too think it's important to understand why my son has
the constipation issues in the first place. I'm floored that the
doctors don't seem to care that he can't pass a BM without the aid
of a laxative. I'm sure there must be something more to it than
just waiting for him to outgrow the problem which is the only thing
I get from the doctors. Because of Jeffrey's nature (Aspergers,
Sensory Integration), finding foods that he finds acceptable is
really challenging. I was hoping to get suggestions from the list
on how to make some changes while still respecting his choices. For
example, I've read that apples and bananas are to be avoided as they
cause constipation. Yet I've also read that apples and bananas are
good fiber foods and should be eaten to prevent constipation. It's
these kinds of inconsistencies that make me want to cry. My son has
such a self-limited diet and I respect his rights to choose his
foods. However, I'm reading that the foods he eats are supposedly
known for their addictive qualities and can cause the types of
problems that my son suffers from. It's all so confusing to me.

Okay, let's get to specifics and start with one thing at a time.
Beverages. My son likes 2% milk both plain or with Nestles
chocolate, Tab, Coke and orange juice. He says water makes him gag
if he drinks too much of it. A typical amount of Coke for him is 4 -
5 cans per day. I'd also estimate that he drinks 36 - 48 oz. of
milk per day. How can I help him switch to drinks that might be
better, such as more orange juice and less soda or milk? He is
extremely upset at the idea of having to give up milk which I
suggested because of the constipation. So I bought Lactaid Milk,
wondering if that would help any since it's easier to digest than
regular milk. He really likes the taste of it, which is good, but
it's still considered milk so I'm not sure if it makes any
difference in switching to it.

BTW, when I asked our former pediatrician about Jeffrey's milk
consumption possibly being linked to his constipation, the doctor
seemed totally unconcerned. He said the Miralax would make it
better and to just serve it in his milk. Our new pediatrician seems
a bit more knowledgeable. We've only seen him once but we have
another appt. in July. I'm going to ask him about this and see if I
can't get some answers instead of just a band-aid for the situation.

Beth M.

Ren Allen

~Ren said if she had a diabetic child she wouldn't leave the M&M
bowl out. My niece was diagnosed with diabetes when she was eleven and
she's twenty one now. She's completely insulin dependant. She eats
M&M's and in fact her doctor told her parents NOT to restrict her diet,
but to give her good information and free choice and to encourage her to
manage her insulin to meet her body's needs no matter what she was
eating.~

11 is a very different age than 3 or 5 or even 8. A small child with
some kind of life threatening illness should not have something
dangerous left within their reach. I don't believe unschooling means
abdicating parental responsibilty to keep our children safe.

Unfortunately, "safe" often means parental fears getting in the way of
logic. LIFE isn't safe. We're all going to die. At the same time, it's
our instinct to survive and protect our young...so we do that to the
best of our ability.

You can get M&M's and other candies that won't mess up your health as
much if you ARE diabetic. I know people that maintain very good
health because they ARE strict with their diet. Finding ways to meet
the desires of a child with health issues is more important to me than
simply leaving every available option within reach.

That's the key....honoring and meeting the desires of the individual.
It's our job to be creative enough to do that.

Ren
learninginfreedom.com

Ren Allen

"For instance, we don't buy Oreos. Instead we buy Newman-O's. All of
us enjoy the flavor as much and in some cases more than the Nabisco
brands of the same type of cookies (choc oreos, gingersnaps, and choc
mints), so there has been nothing lost or restricted."

That's what I'm talking about...meeting the true, underlying need (in
this case for a cookie) while also considering health issues. Getting
restrictive with food creates a sense of lack. Finding creative ways
to meet the need is simply compromise.


Ren
learninginfreedom.com