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We went through a series of reactions; denial, grief, protection, love, desperately seeking information/cures, hope/despair, acceptance: coming to terms with how our son is, not how we would like him to be or what society expects.
I think even if someone had told me all those years ago, how the future would unfold, I would still have followed the same path, would have tried the same therapies. Was never too good at listening to advice, always thought we could beat the odds, a mixture of blind optimism & a dose of arrogance. Personally,
N has revealed me to myself & painfully unravelled the layers of ego, that I am profoundly grateful for. I certainly think you should look for cures/miracles! Magic happens. I feel with hindsight we could have spent more time, doing things he enjoys, concerts, reflexology, swimming,
rather than hours of Kinesiology Cranial Osteopathy, which he didn't enjoy! We have never used any medication, N is passive & therefore things are easier for us than a lot of people. Most of the stress we have had as a family has been caused by other peoples reactions. I still wish for a magic wand, when he gets anxious or stressed. - M
Immune Story | Next Story -
I brought my two "autistic spectrum" daughters to yet another medical professional, immunologist, DrX. I scheduled this visit in the hopes that we might pursue immunological testing in order to assess
any autoimmune issues which might contribute to their obvious developmental disorder. I had previously arranged the appointment as a consultation indicating that my primary interest was in autoimmune processes (IgG & IgA) and not strictly "scratch" allergy testing (IgE).
Having been instructed that insurance issues required their participation in this visit, The very first words out of DrX's mouth as we sat down to talk were "Let me tell you everything there is to say about autoimmunity and autism.
It's very simple... there's no connection, no proven connection, anecdotal reporting." Of course, I was armed with abstracts, brain auto-antibody paper 05/99 Journal of Pediatrics. No; DrX was not familiar with that work... but would consult with his colleagues. Next Singh and Gupta. Yes;
he was aware that Dr. Gupta was infusing autistic patients with IVIG but, "where is the double-blind, placebo controlled clinical trial data?" While I couldn't site a specific reference, I reported that Gupta has presented trial data, asserting that publications
are forthcoming. The point being that the work is valid/ validated. He said that IgG testing was moderately useful at best, while IgA testing was totally useless, because everybody's different. Ditto re. secretory IgA. He considered the use of IVIG in the treatment of autism, secretin,
homeopathic medicine and bad chiropractic technique as "anecdotal reporting." IMO many respected members of the medical community don't want to look critically at the new face of autism... the challenge of parents with our hard won knowledge about our children, and there are Drs.
that you probably should not waste your time seeing - Until DrX can bother to look at the available data and open his mind to the possibility that previously held paradigms re. that Autism (all brain based, hard wired and unfixable?) may be wrong, he is just such a doctor - N (just a parent)
GFCF Story | Secretin | Next Story | Go to Top -
I have to tell you about my 5 year old niece. When she was 3 years old she was very hard to deal with. One could not communicate with her. She could not say "mommy", she could not say "yes" or "no" or even nod her head. She did not understand.
We would take her places and she would scream uncontrollable. It was hard for her to make a transition. She had to always carry
something with her. She would latch on to something and carry it for days!! She had hardly any speech. She would always "jargon"! She did not socialize! She rolled around on the ground in her own world. She would scream if you looked at her or tried to talk to her. She had horrible eye contact.
She didn't understand what was around her. When she was 15 months old she was fine, she smiled at us, had great eye contact, had some speech, use to say "hi" and look at you. 3-6 months after she received her MMR shot she slowly started to loose her words, slowly stopped being social, and slowly lost her eye contact. By the time she was 3 years old she was evaluated at a 6-9 month level. She would always have temper tantrums, no one would know what she wanted. My niece was put in a special preschool and received speech and occupational therapy. She was always getting better. My family was very
optimistic, she was getting better but, very slowly. You can order the book "Special Diets for Special Kids" by Lisa Lewis, phd on http://www.amazon.com There is a new casein and gluten free autism diet website that was just put up in April at http://www.gfcfdiet.com There have been over 10,000 visitors already!
Secretin | Next Story -
In October 1998 we saw DATELINE about the 'Secretin' and the same day on a local news program got a phone number to Dr.Bradstreet for more info about secretin. Dr.Bradstreet has a son just like my niece and had improved a lot from the secretin
and diet combined! My sister called and a few days later went to a seminar of his. At the seminar he convinced my sister to put my niece on the casein and gluten free diet. My sister came home and was determined to try the diet! Within a couple of weeks of having absolutely no casein or gluten in my niece's diet we started to see little improvement. But we weren't sure if it was just in our heads or if the diet was really working.
By December 1998 she was so much better! We thought this is it! We found what works. We couldn't understand why we weren't told to do this diet 2 years ago when she was first diagnosed. On December 9th, 1998 my niece received 1 vial of secretin. Within 24 hours we could see a difference. She Asked "why?" started to write her name, she started drawing detailed pictures of things. We could not believe it.
My sister has continued to keep her on the casein and gluten free diet for the past 10 months. My niece received secretin again in March. In the last 10 months my niece has dramatically improved!! Today she does not TRY to play with other children
she IS playing with other children. She draws detailed pictures and tells you a story about her picture! She looks perfect. You can not tell there is a problem! She looks at things around her and notices people like a normal 5 year old does. Her speech is still behind. But she communicates her thoughts and wants. She now asks "Whats this?" Unbelievable! My niece just started Kindergarten last week! Dr.Bradstreet told my sister that he feels that by the time she enters first grade in September 2000 you will not beable to tell their was a problem.
He said she had characteristics of classic autism at 3 years old, but today I don't even consider her PDD. Dr.Bradstreet calls her a "responder" because she has responded so well from the diet and secretin. If it was not for Dr.Bradstreet and convincing us to do the diet I do not know where my niece would be today. My sister feels that my niece continues to improve so much because of the casein and gluten free diet she is on. The secretin helped flush her out and the diet is keeping her "clean".
It can take up to a year to clean out her body. For the first time this week she told my family the WHOLE story of the "The Three Little Bears" by memory! From the beginning of the story to the end!! My sister started crying she was so happy! This is all new! Today, my sister took Hannah and signed her up for soccer! We would not have thought this to be possible a year ago!! She understands, the "fog" has been lifted! You would call her a little slow now, but not on the autistic spectrum anymore!
You can visit Dr.Bradstreet's website at http://www.gnd.org I am on the internet just trying to pass our story on to others. We just want other parents to experience what we have. YES, we know this dramatic improvement is from being totally gluten and casein free for 11 months now.
Reflections | Next Story -
One reaction to this devastating news is the noble impulse to become the
'best dam parent' that has ever been born we would strongly suggest that
parents with such notions lie down and rest until the impulse has
passed. Although it might seem to be a great idea to dedicate all of
one's energy and resources to the care of one's child, a more balanced
approach is certainly more reasonable and we believe, more productive.
It is also our suspicion that parents using this approach might be a
little more interesting and enjoyable persons while carrying out their
other roles as a spouse, parent and their other children, child of their
own parents and friend to others. Not only would we argue that
parents should strongly resist the temptation to be 'perfect' but we
suggest that parents should be self centred and a bit selfish whenever
they have half a chance. It is essential that parents look after not
only the needs of their off spring but also the well-being of
themselves. It is hard not to be so obsessed but maybe backing off
comes with time or exhaustion? B
Solo Story | Next Story -
Once again you've touched my heart and made even made me cry. Yes, I too
am not the parent I intended to be. I wanted to raise my children with
mountains of love, liberal ideas, and acceptance. I wanted them to be free
thinkers, be confident, and be able to charge ahead full blast into the
world and make their mark. But what I ended up with is being a single
working parent. I come home tired. I have NO social life. I am obsessed
with autism/aspergers and make everyone around me listen to what new
information I have learned about my son. I am one of 'those' parents at
school. I have had to learn (still learning) to adjust and accept the idea
that R is autistic. I have had to teach myself to react differently to
his behaviour. I have to find a way to go to a store and endure the stares
and whispers without lashing out at people's ignorance and rudeness. This
is not at all what I wanted or expected. I love my son dearly and at this
point I wouldn't change him for the world. I would like things to be
easier for him but having aspergers has made him the intruiging child he is
today. So, yes, I agree with you that we are not always the parents we set
out to be -- our children make us better - W
THE MOUNTAIN |
Next Story -
There were two waring tribes in the Andes, one that lived in the
lowlands and the other in the mountains. The mountain people invaded the
lowlanders one day, and as part of their plundering of the people, they
kidnapped a baby of one of the lowlander families and took the infant with
them back up into the mountains.
The lowlanders didn't know how to climb the mountain. They didn't know
any of the trails that the mountain people used, and they didn't know where
to find the mountain people or how to track them in the steep terrain.
Even so, they sent out their best party of fighting men to climb the
mountain and bring the baby home.
The men tried first one method of climbing and then another. They
tried one trail and then another. After several days of effort, however,
they had climbed only several hundred feet.
Feeling hopeless and helpless, the lowlander men decided that the
cause was lost, and they prepared to return to their village below.
As they were packing their gear for the descent, they saw the baby's
mother walking toward them. They realized that she was coming DOWN the
mountain that they hadn't figured out how to climb.
And then they saw that she had the baby strapped to her back. HOW
COULD THAT BE?
One man greeted her and said, "We couldn't climb this mountain. How
did you do this when we, the strongest and most able men in the village
couldn't do it?"
She shrugged her shoulders and said, "It wasn't your baby." - JS
Oxygen Talk |
Next Story -
Hypotonia (low muscle tone) is very common in autism and goes along
with the rest of the proprioceptive (body awareness) weakness.
Breathing is controlled by muscles. Consequently, it is likely that a lot
of autistic kids have borderline hypoxia (low oxygen levels). Chronic
hypoxia (slightly low levels for a long period of time) and acute hypoxia
(very low levels for a short period of time) have been shown to cause brain
damage. For instance, high altitude climbers show evidence of mild brain
damage. The surgical anecdotals of temporary recovery post surgery
are of unknown value in this area because there are so many variables involved:
the initial reason for the surgery, the pain factor, the trauma factor
(many autistic people suddenly "come out" at acute moments of great stress),
and the other drugs administered.
There remains, too, the question of whether brain damage causes the
proprioceptive problem and the resulting muscle weakness that leads to the
hypoxia, or if the hypoxia itself is the genesis of the other conditions.
Odds are it isn't a clear-cut cause/event relationship as we Westerners
crave, but more of a circular causality such as is recognized in Eastern
medical conceptual matrices.
In any case, oxygen saturation tests are fairly simple medical
procedures, and perhaps we should be asking for them as part of routine
medical care for people with autism. -W
Stress? | Next Story -
Anybody know anything about the effect anaesthetics
have on AS kids?? my 14 yo AS had an anaesthetic
recently and for a few days she "wasn't AS" she was NT,
it didn't last. but it's interesting. - J
I've noticed that changes in health,
medication or routine can bring about increased responsiveness and
reduction in hyperactivity etc. Once the change settles
in as status quo behaviour patterns return.
Trialing new medications often seem to have an initial benefit
but all have had no lasting value for her.
She has a cold at the moment and is staying inside
reading, no tantrums and responding well. - L
I have noticed a change in responsivness the day after my
AS daughter has had a dose of Dozile to help her get to sleep.
I think that the quality of sleep is the key.
It seems to leave her relaxed and not so stressed.
I am beginning to think AS is a form of 'stress'.
I have been suffering from severe stress for some time
and some times I think I am experiencing some of the
sensory problems my daughter lives with because of this
'overloading'. Anyone else have any thoughts on this? - L
How One Mother Cured her Child of Autism |
Next Story -
Parents who are running Applied Behavior Analysis (ABA) programs based on
the work of Ivar Lovaas tend to congregate on the ME-List, which is focused
exclusively on the topic and little else. ABA can cure autism for some
children, but for only a small percent. Almost any child who goes through a
properly run program will find some healing. How do parents feel about ABA,
given that only a small percentage end up indistinguishably "recovered"
after hundreds of hours of intensive program work? Parents have voted with
their feet: the Me-list, with well over two thousand subscribers wading
through 50 email *a day*, is the single largest email list for autism on
the internet. Here's how one mother explains her daughter's recovery, with
her permission. -ls] -
Click here to link to ABA story
Hi. My autistic son is 6 yrs old now.
He was diagnosed early, before he was two.
I have been busting my tail for the last four years
(seems like 50 yrs)
making sure he had the very best and latest treatment.
We have done and do practically everything -
ABA, secretin, Dr. Goldberg, the GF/CF diet, supplements, antivirals,
antifungals, ...
I spent about a two or three months in the
"phase 1- shock, denial".
Then I spent the next four years in the
"phase 2- grieving, desparation".
Well, I have officially arrived in the
"phase 3- ANGER!!"
He has always been considered "mildly autistic",
if that matters at all.
I was so sure he would overcome the autism.
We did everything right.
We even got our school district to pay for the ABA.
Well, this christmas, for the 5th year in a row,
he walked right past his new and exciting gifts,
over to the pile of hundreds of videos
and picked the oldest Barney he could find.
He brought it to me and said, "Mommy, I want this one.".
I AM SO ANGRY. I find myself getting mad at him.
I have unfortunately come to realize
that he is NOT going to be recovered.
He IS making progress. He is becoming a smarter autistic child.
But he is not losing his autistic characteristics.
I am so disappointed for me and for him.
I guess I am just so mentally and physically exhausted.
It has been constant hiring and training of therapists,
trying new meds, switching drugs, undergoing tests,
sending urine specimens, hair specimens, stool specimens, etc.
CAN I TURN IN MY TWO WEEK NOTICE???
I know it is not that simple.
He is the oldest of three boys.
I don't like the fact that I have come to the ugly realization
that he is not going to ever be NOT autistic.
I am at a different place now with my acceptance,
and I don't like it.
NO, I will never 100% give up all hope,
but I am getting tired. So tired.
Now, I worry about his brothers.
They, whether they like it or not,
are going to have to look after their brother
for the rest of his/their lives after my husband and I are gone.
For all those who are already in "phase 3"
and doing well, any good advice? T
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