Vicki, Neal and Rebecca,

Welcome to the list. The last time I checked, 43 people had joined. I'm very
excited.

Patricia

Virginia,

Welcome to the list.

Patricia

Hi everyone!  I am Virginia, and my son is Logan, six years old.   Like many
of you we have been put thru the wringer getting services, lawsuits with the
local school district, arguments with uninformed "'professionals", etc, etc,
etc.  Logan is now recovered with just a few trace residua left that unless
you know his history you don't notice.  He doesn't know it yet, but with his
personality and intelligence, the only job that is going to satisfy him when
he grows up is Chief Justice of the Supreme Court.
;-)

He is a neat little boy.  He is in first grade which is right on schedule.
Academically he is at least two grade levels ahead of schedule, with reading
even more, as he is/was hyperlexic.  He loves to write. This summer, to make
money, he wrote a book which he sold to as many people as he could think of.
This fall he researched then wrote a play for his class about the first
Thanksgiving, which they had two adorable performances of - one for parents
and one for a senior center. This spring he says he is going to use my
camcorder and make a movie.

He is also doing Taekwondo and having a blast winning trophies at
competitions (all kids his age that enter get one), and just last night at
the annual awards banquet he recieved an award that all the instructors and
parents had to vote on - Student Spirit Award.  Shocked the heck outa me.
What is really cool is that nobody in that room knew his diagnosis.

This brings me to what I hope is a topic of discussion over the next few
months - to hide or not to hide.  Due to problems with the moronic school
district we live in, he attends a private school out of town.  They know his
diagnosis, as we needed an aide at first, and they would film, etc.  This
school has never treated him any different than any other student, and have
gone out of thier way to help in any way they can, including adding the first
grade a year ahead of schedule so that Logan would have one more year in this
haven before having to go back into the cold, cruel world of public schools.
;-)   I am looking at two possible placements for him next year and the
school he attends now has promised not to let any paperwork out that says
anything about the diagnosis.  We will be moving and hiding the diagnosis. I
feel this will give him the best chance at a normal life.  I don't want some
college, employer, or insurance company finding out about this a decade or
more from now and causing him any problems.  He has been thru enough already.
  I also feel it is his decision on who and when to share his diagnosis with -
not mine.

Well, that is us in a rather long nutshell.  Looking forward to meeting
everyone! Virginia Widick

Hello,

We are the parents of a 7 year old boy, Daniel, who we have great
hopes for. He isn't recovered now, but he's doing well and has a
good shot at recovery. We're using CARD as consultants.

Here in Missouri, we had to fight with our district to get funding
for ABA but were successful due to the help of many other parents
of children with disabilities. Now the district has a large ABA
program going with about 150 kids, some served by outside
consultants and some served by the districts' in-house ABA
consultant. There is still a waiting list.

When Daniel was 5, we discontinued all other interventions and
provided him with 40 hours per a week of in-home ABA therapy (we
did some things ourselves for sensory integration). The school
district had tested him immediately prior to this as part of an
initial assessment. After 9 months, the district retested him to
get a new baseline because we had resolved our differences over
programming, and found among other favorable results that his IQ
score had risen from 64 to 98 (exactly normal) in that 9 month
period.

Anyway, they paid us for those 9 months and are still paying, and
Daniel is still moving along. We only wish we hadn't been steered
away from intensive ABA therapy when he was younger.

Neal & Rebecca
--
See our website at http://D.Family.home.att.net  Personal pages,
internet info, autism links, a special ed resource & issues page.
The Checklist for Autism in Toddlers(CHAT) available to download.
Also available: A chatroom & discussion list for parents.
Chatroom is at http://www.egroups.com/ChatPage?listName=a_list
Contact us QUICK at http://wwp.icq.com/27337518

Would you please list their web site?
We've already done Fast Forword I, and are going to begin FF II in
January..still looking for other types of therapies...
Vicki
<<
  << One exciting new intervention that I want to try too is called the
   Interactive Metronome. It is a computerized excercise program that helps
   to improve a child's timing . This has shown to be extremely helpful
   with ADHD kids,as it seems to help improve concentration, motor skills
   and even social interaction. I know very little about it but they do
   have a video clip you can watch on their website. If anyone knows more
   than I do or has used this I would love to hear about your experiences.
   Thanks , Lynette
    >>
  Lynette,

  Please keep us posted on the Metronome. I'm very interested in that.

  Patricia
   >>

Hello LIst,
I just wanted to say hello and thanks to Patricia for beginning this type of
list.
My son, Justin-8 yrs- 2nd grade, is a recovered child, with very little
residue of autism left. Actually, he's lost the diagnosis, and is now
considered ADD.... and with work, we'll eventually lose that one too!!
Anyway... I just wanted to say welcome... and hello.
Vicki

Lynette:
     Thanks for sharing!! I will definitely check this out and put in our
son's "resource" file for later on.
Andrea

Hi, everyone. I am so excited about this new list. I'd like to share our
story not only to introduce myself, but also to hopefully share with others
the components of my  little guy's remarkable progress (in less than one
year) on the road to recovery.
     We have a 3.4 yr. old son who was diagnosed with autism (PDD, which in my
opinion is autism) in January 1999 at age 2-1/2. We have actually been able
to "halt" the autism and he is now moving solidly along the path to
recovering. Last Christmas he had almost no "language," only babble and
sounds, his eye contact was negligible, he did not acknowledge anyone who
came or went, and he had very serious tactile defensiveness (didn't want to
be touched or held.) He was very withdrawn, spaced out, and would be content
to push Brio trains by himself around a track for hours if we let him.
     Today he relates to people all day long and is very social, his eye
contact is drastically improved, he spontaneously speaks in 3-5 word phrases,
he routinely seeks and calls out for us ("MOM!!"... "DAD!!"), he intiates
with us and others, he spontaneously hugs and kisses, and his touch
sensitivity and stims are minimal. In July, just after his 3rd birthday, he
started potty training and in only 6 weeks he got it all together. He now
verbally indicates when he needs to go. He has recently become very imitative
and he now imitates his older brother, adults, and other kids.
     The latest "WOW" is that last month 3 independent experts: our DAN! Dr.,
an ABA Program Coordinator, and our son's ABA school Director all told us
that our son is now ready to start "mainstreaming" 2 days/wk back into a
regular preschool (with an aide) in January--only 1 year after learning he
had autism. He is slowly "sliding up" on the CARS scale and the prospects are
that he could ultimately "lose" his diagnosis.

     We have done the following with our son:

1.  Secretin-  (Ferring) We started with 3 IV infusions, spaced 4 -5 weeks
apart, and we now give it to him at home transdermally using DMSO, every
other day. Most DAN! doctors generally agree to begin with the IV infusions,
so as to give the system an initial "flush" or jump-start.

2.  Gluten-Free/Casein-Free diet - We did the IgG blood testing and found out
that our son was high in antibodies for both gluten and casein. This diet has
halted the "opioids" (morphine-like substances) getting to his brain and he
is totally alert and aware of his environment and other people. He initiates
interactions, follows directions, and can even respond to questions about
what he did in school. This testing and the diet is a CRUCIAL part of our
son's recovery.

     If you have the gluten and casein testing done and find your child needs
to be on the gf/cf diet,  I would direct you to this website:
www.gfcfdiet.com.
It was put together by several parents of autistic children who are making
great progress with this intervention, and has TONS of helpful information on
getting the diet "right." (It can be tricky, and you'll start reading a lot
of food labels...)

3. Supplements:   We started our son with two supplements that are highly
recommended by Dr. Bernard Rimland, the esteemed autism expert:
      - DMG - Available at most health food stores. Look for "Aangamik" brand
in green and yellow striped box. Try one tablet/day, which dissolves very
easily in OJ; work up to two/day unless you see hyperactivity, then stop
there.

     - Super Nu Thera (liquid) vitamins - Special formulation with high B6 +
magnesium that Dr. Bernard Rimland helped to formulate. Contact:
Kirkman Sales Co., Oregon. Ph. (800) 245-8282. Follow direction for slowly
"ramping" up on dosage. Comes in liquid or powder.

We then moved onto other things, including:

     - Efalex Focus- Essential Fatty Acids complex. I buy the capsules and
squeeze the contents of one into his morning O.J.

     - Acidophillus Lactobacillus: Available at any health food store. This is
the "good" intestinal bacteria our children are generally deficient in.

     - Antifungal Rx treatment: We have used Nystatin successfully to treat
"bad" intestinal yeast/bacterial overgrowth.

     - Phosphatidyl Serine- Available at health food store. A supplement also
used with alzheimer's patients to promote memory abilties.

     - SerenAid: A new digestive enzyme designed to break down gluten and
casein peptides. Available from Klaire Laboratories, ph. (800) 533-7255.

4. Intensive 1:1 ABA
You can look around your area for special autism preschool programs that
provide this and/or set up a home-based ABA program. During the first year or
two, the thinking according to Lovass is that you try to do 1:1 and as many
hours as your child is able to accomplish. Most of the peer-reviewed
literature suggests 30-40 hrs/week.
     We started with an in-home program 22 hrs/wk. when our son was diagnosed
at 2-1/2 yrs. He entered a 1:1 ABA Autism school at age 2.10 yrs, while
continuing to do 8-10 hrs of ABA and speech therapy at home. From the looks
of things and the comments of his teachers, he may be leaving this particular
Autism program sometime later this year. (Believe me, I am still a little
startled at the very thought of this!)
     Based upon my son's response to all the biomedical stuff, I am curious if
those of you with children who are mainstreaming at the elementary level had
their children involved in similar interventions? I recently started a local
"biomed" support group for moms with young children with autism so that we
all can share ideas and experiences to benefit our little ones.
     I am so pleased that this list has been started, as I know there will be
many unfathomed issues for us as we move forward with our son.

Regards,
Andrea Terry
also in northern NJ

AMTerry@... wrote:
> > >
> Lynette:
>     Can you provide a website or phone number to call for more information on
> the Fast Forword program?

www.scilearn.com

>     Also, do you know at what age this might be appropriate?

We did FFWD 1 this past summer at six years. I had originally heard that
they needed to be six but I know of four and five year olds who have
done the program.
KNowing what sll it encompasses I'm not sure how well we would have done
at five, I would recommend that unless a child is very verbal and high
functioning to wait til six. The Language Comprehension game gets into
some pretty complicated sentence structure.

Lynette
>
> > Community email addresses:
>   Post message: RecoveredKids@onelist.com
>   Subscribe:    RecoveredKids-subscribe@onelist.com
>   Unsubscribe:  RecoveredKids-unsubscribe@onelist.com
>   List owner:   RecoveredKids-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/RecoveredKids

In a message dated 12/3/99 3:25:28 PM Eastern Standard Time, lnett@...
writes:

> But I have seen such improvement over the past year
>  and a half even without a lot of formal therapy. Fast For Word really
>  has helped.
Lynette:
     Can you provide a website or phone number to call for more information on
the Fast Forword program?
     Also, do you know at what age this might be appropriate? My son is 3.4
yrs, verbal and will be attending his ABA school and a regular preschool with
a shadow 2 days/wk starting in January. His biggest hurdle at this point is
the expressive language.
     Thanks.
Andrea

Hello,
       I had been a member of the me- list for about two years. I have three
children Tim, 8, who has Asperger syndrome, Ryan,who is 6 and Jordan who is
3. Jordan being the reason that brought me to this list and to the me-List.
Jordan was typical up to around 17 months. He is diagnosed with autism. is
cnon verbal, although he has recently started to do some verbal imitation.
but no words. He recently started in a full day ABA special Ed. school. Prior
to that , We had in home ABA. I am pleased with his progress, he has made
alot of progress since we started, but of course I am hoping for him to
become verbal. i also wonder if we should try to supplement "extra in home"
ABA on the weekends.Although We are not in the position to afford to pay
anyone. I have only recently been thinking about the GF/CF diet and other
methods , I really don't know that much about it. I would love to hear other
people's stories and suggestions.
     Eileen

Robin,

I don't think I've welcomed you yet. Welcome to the list!!!

Patricia

Joanne,

Welcome to the list. I'm happy you're here.

Patricia

In a message dated 12/3/99 12:36:16 PM Pacific Standard Time,
AuRugby1@... writes:

<<
  Hello!  I am very excited about this list!  I have been on the ME List since
  Spring 99.  I have been an ABA therpist for about 5 years now (since
  highschool!) and now I am about to graduate college!  I just can't get
enough
  of hearing other people's stories and things they did to help their children
  recover and progress.  I have received SO much helpful information and this
  list will add to that helpfullness!  Plus it will give me insight to
  understand how children who are recovered are doing at school and the skills
  they have gained. Thank you for making this list available to us therapists!
  :)
   >>
Shauna,

Welcome to the list and thanks for joining. I hope more therapists will
follow you. I'm now working part-time as an ABA therapist myself.

Patricia

In a message dated 12/3/99 12:24:58 PM Pacific Standard Time, lnett@...
writes:

<< One exciting new intervention that I want to try too is called the
  Interactive Metronome. It is a computerized excercise program that helps
  to improve a child's timing . This has shown to be extremely helpful
  with ADHD kids,as it seems to help improve concentration, motor skills
  and even social interaction. I know very little about it but they do
  have a video clip you can watch on their website. If anyone knows more
  than I do or has used this I would love to hear about your experiences.
  Thanks , Lynette
   >>
Lynette,

Please keep us posted on the Metronome. I'm very interested in that.

Patricia

JoAnne LaGreca wrote:
>
> From: JoAnne LaGreca <jblag@...>
>
> Lynette
>   When did Reagan
> start kindergarten?

Reagan started kindergarten at age 5. Her birthday is in April and I
could have waited a year but I was eager for her to try. Not a real good
thought process, I realize in retrospect.  Even so she is really doing
fine, but I see that she seems less mature and much less sophisticated
than her classmates even in a class of fairly young children(several
turned six in the summer)

  One issue we will face is next September.  Joseph would
> typically start kinder next September and I'm hoping we'll be able to test the
> waters before then to determine whether to send him or hold him back a year.

Depending on his age you could be okay to start him on time -like if he
has a September birthday. Since Reagan has an April birthday she is
young in her class. I'm just wanting her to have the advantage of more
maturity, just in case it does become a bigger issue.

  Did
> you start Reagan with her own aide in kinder?

She attended preschool at the same school which we enrolled her in
November of her preschool year. That was when she actually started
without an aide. She went for part of her two year old year and her
three year old year at a different school with an aide. I worried about
sending her alone too early but she did fine. The aide issue had caused
problems at her other school so I was leery of jeopardizing her
placement at the new school.

> Thanks!  This is just the type of information I need!
>
Hope it's helpful! Lynette

Lynette
Hi!  I am JoAnne, mom of Joseph, who will be 5 in February.  While Joseph is not
"recovered" he is doing very well and we are very proud of him.  When did Reagan
start kindergarten?  One issue we will face is next September.  Joseph would
typically start kinder next September and I'm hoping we'll be able to test the
waters before then to determine whether to send him or hold him back a year. 
Did
you start Reagan with her own aide in kinder?
Thanks!  This is just the type of information I need!
JoAnne, north New Jersey

Lynette Rorer wrote:

> From: Lynette Rorer <lnett@...>
>
> sbourgeois@... wrote:>
> >
> > Also, when and how did you phase out an entire program of
> > one-on-one?
>
> This happened gradually and like I said we still have two therapists who
> come once a week. I guess we really cut back on her hours when she
> started kindergarten - Approx. 15 months ago. We did between 15 an 30
> hours of direct in the chair therapy for 3 1/2 years. We also did
> considerable amounts of generalization, preschool and extra curricular
> stuff like gymnastics and dance and piano.
> I think what happened just naturally was that as she became more andmore
> typical her activities became more and more those of a typical child and
> since all those typical activities were so good for her we just found
> ourselves with less time for real therapy. SOmetimes I was afraid that
> we stopped too soon. But I have seen such improvement over the past year
> and a half even without a lot of formal therapy. Fast For Word really
> has helped.
>
> Does anyone think what they do now is have tutors come over
> > once in a while for extra help, vs. therapists coming over for discrete
> > trial, ABA type intervention?
>
> I think our therapists come over to see Reagan, to talk sand play and
> they go to her swim meets and piano recitals. I don't think they want to
> lose track of her!
> A lot of what they do involves practicing soccer skills or other gross
> motor stuff which Reagan just needs to work harder at then typical kids.
>
>
>   Also, has anyone hit kindergarten or 3rd grade or some
> > other milestone and then needed to restart a home program to assist with the
> > more difficult material in the classroom?
>
> The only thing we have had to go back to discrete trials to teach was
> money last year in kindergarten. They did introduce this earlier than
> most kids get it-had Reagan to learn the same thing this year I think
> she would have picked it up from the classroom instruction.
> I do have a plan to keep Reagan out of school next year, "homeschooling"
> to give her an extra year to mature since we did not hold her back a
> year like I wish we would have. We will do Fast ForWord 2 and a lot of
> verbal reasoning, reading comprehension etc to insure that she does not
> fall behind. She is not so far-but I'm paranoid. Plus, I really want
> that time with her-just us with out therapy going on. I feel like I
> missed a big chunk of her childhood-her toddlerhood, and the preschool
> years-and it makes me sad. Since she's my last baby, I may jsut be
> indulging myself - but I'm entitled. Reagan is looking forward to it,
> though I'm not sure she understands that she won't be in second grade
> with her friends til a year later. She has a lot of friends in the
> kindergarten class at her school and several friends from the
> neighborhood who are  a year younger so even if we change schools I'm
> not that concerned about the social part. In fact I thinkit will be
> better.
> One exciting new intervention that I want to try too is called the
> Interactive Metronome. It is a computerized excercise program that helps
> to improve a child's timing . This has shown to be extremely helpful
> with ADHD kids,as it seems to help improve concentration, motor skills
> and even social interaction. I know very little about it but they do
> have a video clip you can watch on their website. If anyone knows more
> than I do or has used this I would love to hear about your experiences.
> Thanks , Lynette
>
> > Christopher is 3.8 years and has had a home program for 11 months now.  He
> > also attends preschool for 9 hours a week and his shadow faded after about 2
> > months.  He receives approx 25 hours of one-on-one besides school and goes
> > to speech therapy 2x a week.
> > Thank you for starting and contributing to this important list
> > Susan
> >
> > > Community email addresses:
> >   Post message: RecoveredKids@onelist.com
> >   Subscribe:    RecoveredKids-subscribe@onelist.com
> >   Unsubscribe:  RecoveredKids-unsubscribe@onelist.com
> >   List owner:   RecoveredKids-owner@onelist.com
> >
> > Shortcut URL to this page:
> >   http://www.onelist.com/community/RecoveredKids
>
> > Community email addresses:
>   Post message: RecoveredKids@onelist.com
>   Subscribe:    RecoveredKids-subscribe@onelist.com
>   Unsubscribe:  RecoveredKids-unsubscribe@onelist.com
>   List owner:   RecoveredKids-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/RecoveredKids

Lynette
Hi!  I am JoAnne, mom of Joseph, who will be 5 in February.  While Joseph is not
"recovered" he is doing very well and we are very proud of him.  When did Reagan
start kindergarten?  One issue we will face is next September.  Joseph would
typically start kinder next September and I'm hoping we'll be able to test the
waters before then to determine whether to send him or hold him back a year. 
Did
you start Reagan with her own aide in kinder?
Thanks!  This is just the type of information I need!
JoAnne, north New Jersey

Lynette Rorer wrote:

> From: Lynette Rorer <lnett@...>
>
> sbourgeois@... wrote:>
> >
> > Also, when and how did you phase out an entire program of
> > one-on-one?
>
> This happened gradually and like I said we still have two therapists who
> come once a week. I guess we really cut back on her hours when she
> started kindergarten - Approx. 15 months ago. We did between 15 an 30
> hours of direct in the chair therapy for 3 1/2 years. We also did
> considerable amounts of generalization, preschool and extra curricular
> stuff like gymnastics and dance and piano.
> I think what happened just naturally was that as she became more andmore
> typical her activities became more and more those of a typical child and
> since all those typical activities were so good for her we just found
> ourselves with less time for real therapy. SOmetimes I was afraid that
> we stopped too soon. But I have seen such improvement over the past year
> and a half even without a lot of formal therapy. Fast For Word really
> has helped.
>
> Does anyone think what they do now is have tutors come over
> > once in a while for extra help, vs. therapists coming over for discrete
> > trial, ABA type intervention?
>
> I think our therapists come over to see Reagan, to talk sand play and
> they go to her swim meets and piano recitals. I don't think they want to
> lose track of her!
> A lot of what they do involves practicing soccer skills or other gross
> motor stuff which Reagan just needs to work harder at then typical kids.
>
>
>   Also, has anyone hit kindergarten or 3rd grade or some
> > other milestone and then needed to restart a home program to assist with the
> > more difficult material in the classroom?
>
> The only thing we have had to go back to discrete trials to teach was
> money last year in kindergarten. They did introduce this earlier than
> most kids get it-had Reagan to learn the same thing this year I think
> she would have picked it up from the classroom instruction.
> I do have a plan to keep Reagan out of school next year, "homeschooling"
> to give her an extra year to mature since we did not hold her back a
> year like I wish we would have. We will do Fast ForWord 2 and a lot of
> verbal reasoning, reading comprehension etc to insure that she does not
> fall behind. She is not so far-but I'm paranoid. Plus, I really want
> that time with her-just us with out therapy going on. I feel like I
> missed a big chunk of her childhood-her toddlerhood, and the preschool
> years-and it makes me sad. Since she's my last baby, I may jsut be
> indulging myself - but I'm entitled. Reagan is looking forward to it,
> though I'm not sure she understands that she won't be in second grade
> with her friends til a year later. She has a lot of friends in the
> kindergarten class at her school and several friends from the
> neighborhood who are  a year younger so even if we change schools I'm
> not that concerned about the social part. In fact I thinkit will be
> better.
> One exciting new intervention that I want to try too is called the
> Interactive Metronome. It is a computerized excercise program that helps
> to improve a child's timing . This has shown to be extremely helpful
> with ADHD kids,as it seems to help improve concentration, motor skills
> and even social interaction. I know very little about it but they do
> have a video clip you can watch on their website. If anyone knows more
> than I do or has used this I would love to hear about your experiences.
> Thanks , Lynette
>
> > Christopher is 3.8 years and has had a home program for 11 months now.  He
> > also attends preschool for 9 hours a week and his shadow faded after about 2
> > months.  He receives approx 25 hours of one-on-one besides school and goes
> > to speech therapy 2x a week.
> > Thank you for starting and contributing to this important list
> > Susan
> >
> > > Community email addresses:
> >   Post message: RecoveredKids@onelist.com
> >   Subscribe:    RecoveredKids-subscribe@onelist.com
> >   Unsubscribe:  RecoveredKids-unsubscribe@onelist.com
> >   List owner:   RecoveredKids-owner@onelist.com
> >
> > Shortcut URL to this page:
> >   http://www.onelist.com/community/RecoveredKids
>
> > Community email addresses:
>   Post message: RecoveredKids@onelist.com
>   Subscribe:    RecoveredKids-subscribe@onelist.com
>   Unsubscribe:  RecoveredKids-unsubscribe@onelist.com
>   List owner:   RecoveredKids-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/RecoveredKids

netmom3@... wrote:
>  >>
> Our SLP
> is FF certified but does not offer it. She went throught the training but
> disagrees with the expense versus what she thinks most kids would get out
> of it,

Hi Louise,
I really don't like the cost of FFw but we didn't have to pay an SLP
because we did it htrough a friend who is a physical therapist and was
able to get cetified as a provider. So we did'nt have duch large fees to
pay. I do think that for what it ahs done for Reagan I would have pais
5,000. +  . It has been our goal for so long to get spontaneous sharing
of experiences. Reagan seemed to have difficulty recalling information
and then sequencing it into coherent narrative language. She was
spontaneous with commenting and could hold a basic conversation but her
pragmatics were still weak and I really jsut had the feeling that some
key elements were missing and effecting her ability to produce language.
SInce school started and she finished FFWD her recall of events seems
better, her reasoning seems better and her spontaniety is wonderful! Now
I know that FFWD di not produce all these changes in her mnetal
functioning but I thin it has allowed her to EXPRESS what she knows.
There is a game that develops working memory and I'm sure that helped a
lot. I think that the combination of skills that develops from doing the
exercises intensively effests a lot of areas and it all contributes to
better language, both receptive and expressive.
.
> According to what I've heard about FF they believe that one of the key
> elements is that the kids don't hear the sounds correctly - I think that
> Adam hears the sounds just fine. What do you think?

I highly doubt that that is all of it. Reagan did have problems (a lot
of them) with one game in particular in which they have to match
phonemes. But as I said there were so many skills that were improved by
playing that I don't understand why they tell people that it is just a
matter of mishearing sounds. I really think that there is more to it.

Also what was Reagan
> like prior to FF and how much did she improve.

Reagan was pretty awesome before, (my miracle child) but now she is so
much more confident with her language - it has improved her social
behavior as well as helping her to succeed in a very demanding first
grade classroom. She shares so much more with us - ex. the other night
we were sitting at the kitchen table and she was working on a homework
paper- she looked up out of the blue and said "Hey Mom, you were right.
We ARE going to be elves. Mrs. Hackney ordered shoes for us. All the
pre-k ,kindergarteners and first graders will be elves. We are the only
ones who get elf shoes"  No way could she put that much together that
she had pulled from random thoughts before FFWD.  It just comes so easy
for her now. I am thrilled and plan to do FFWD 2 next fall.

  Is FF just for improving
> receptive language or is it geared for expressive also (Adam has more
> expressive issues)?

It definitely improves both-at least it did for us.

I've also heard that you can do it at home rather
> than going to the SLP's every day - is this what you did?

Yes, I don't think we'd have been able to manage going somewhere every
day at a preset time.

  Does FF really
> differ from all the other software packages that you can get at the store
> for $29

YES YES YES

and/or is it the intensity that makes it different?

The intensity makes a big difference but it is really the program that
is better. Reagan would not play earobics unless we bribed her big time
and even then it was a struggle. I don't know about any others and I
know earobics cost more than 20.00. I recommend it highly if you can
work out the particulars. Lynette
Sorry for all
> the questions.
>
> No problem! :)
>
> > Community email addresses:
>   Post message: RecoveredKids@onelist.com
>   Subscribe:    RecoveredKids-subscribe@onelist.com
>   Unsubscribe:  RecoveredKids-unsubscribe@onelist.com
>   List owner:   RecoveredKids-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/RecoveredKids

Hello!  I am very excited about this list!  I have been on the ME List since
Spring 99.  I have been an ABA therpist for about 5 years now (since
highschool!) and now I am about to graduate college!  I just can't get enough
of hearing other people's stories and things they did to help their children
recover and progress.  I have received SO much helpful information and this
list will add to that helpfullness!  Plus it will give me insight to
understand how children who are recovered are doing at school and the skills
they have gained. Thank you for making this list available to us therapists!
:)

Shauna
Auburn University
Undergraduate in Early Childhood Special Education

sbourgeois@... wrote:>
>
> Also, when and how did you phase out an entire program of
> one-on-one?

This happened gradually and like I said we still have two therapists who
come once a week. I guess we really cut back on her hours when she
started kindergarten - Approx. 15 months ago. We did between 15 an 30
hours of direct in the chair therapy for 3 1/2 years. We also did
considerable amounts of generalization, preschool and extra curricular
stuff like gymnastics and dance and piano.
I think what happened just naturally was that as she became more andmore
typical her activities became more and more those of a typical child and
since all those typical activities were so good for her we just found
ourselves with less time for real therapy. SOmetimes I was afraid that
we stopped too soon. But I have seen such improvement over the past year
and a half even without a lot of formal therapy. Fast For Word really
has helped.

Does anyone think what they do now is have tutors come over
> once in a while for extra help, vs. therapists coming over for discrete
> trial, ABA type intervention?

I think our therapists come over to see Reagan, to talk sand play and
they go to her swim meets and piano recitals. I don't think they want to
lose track of her!
A lot of what they do involves practicing soccer skills or other gross
motor stuff which Reagan just needs to work harder at then typical kids.


   Also, has anyone hit kindergarten or 3rd grade or some
> other milestone and then needed to restart a home program to assist with the
> more difficult material in the classroom?

The only thing we have had to go back to discrete trials to teach was
money last year in kindergarten. They did introduce this earlier than
most kids get it-had Reagan to learn the same thing this year I think
she would have picked it up from the classroom instruction.
I do have a plan to keep Reagan out of school next year, "homeschooling"
to give her an extra year to mature since we did not hold her back a
year like I wish we would have. We will do Fast ForWord 2 and a lot of
verbal reasoning, reading comprehension etc to insure that she does not
fall behind. She is not so far-but I'm paranoid. Plus, I really want
that time with her-just us with out therapy going on. I feel like I
missed a big chunk of her childhood-her toddlerhood, and the preschool
years-and it makes me sad. Since she's my last baby, I may jsut be
indulging myself - but I'm entitled. Reagan is looking forward to it,
though I'm not sure she understands that she won't be in second grade
with her friends til a year later. She has a lot of friends in the
kindergarten class at her school and several friends from the
neighborhood who are  a year younger so even if we change schools I'm
not that concerned about the social part. In fact I thinkit will be
better.
One exciting new intervention that I want to try too is called the
Interactive Metronome. It is a computerized excercise program that helps
to improve a child's timing . This has shown to be extremely helpful
with ADHD kids,as it seems to help improve concentration, motor skills
and even social interaction. I know very little about it but they do
have a video clip you can watch on their website. If anyone knows more
than I do or has used this I would love to hear about your experiences.
Thanks , Lynette

> Christopher is 3.8 years and has had a home program for 11 months now.  He
> also attends preschool for 9 hours a week and his shadow faded after about 2
> months.  He receives approx 25 hours of one-on-one besides school and goes
> to speech therapy 2x a week.
> Thank you for starting and contributing to this important list
> Susan
>
> > Community email addresses:
>   Post message: RecoveredKids@onelist.com
>   Subscribe:    RecoveredKids-subscribe@onelist.com
>   Unsubscribe:  RecoveredKids-unsubscribe@onelist.com
>   List owner:   RecoveredKids-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/RecoveredKids

Hi all,
Well I managed to get on this thing. I was not quite sure there for a while.
I have been following the ME-List for about a year. I have never posted so I
would like to introduce myself. My name is Robin. We have three girls. Ages 4,
6 and 8. Abby is my middle daughter. She received a diagnosis of PDDNOS last
year at age five. Prior to this she was considered borderline PDD. I went to
two other doctors who would not give her a diagnosis because she actually
played peekaboo and was too affectionate. She also had limited language. She has
been
in a aba program for a year now. She has completed almost all intermediate
programming and is well into the advanced. She is 6 now and will repeat Kind.
in a public school in the Fall of next year. She will have an aide trained in
aba.(hopefully that can be faded) She is coming a long quite well verbally.
She is able to use 8 word sentences at times. However, she still has echoes
videos.
She plays all the time with her sisters. They act out videos together. She plays
monster, hide and seek, tents, baby's. When people comeover now she askes them
is they
can play. She still needs tons of work on coverstational skills, some transitons
and auditory  processing issues. She also has some fine motor needs as well. All
and all she is
great. When we took her to Children's this last time the doctor said that
she could not pick her out from other children in a play situation. I really
look forward to hearing from all of you. Sorry if I rambled.
Robin

New List
I don't think that I should really call Christopher recovered yet, but I
would love to hear more details from those who do term their children
recovered.  Also, when and how did you phase out an entire program of
one-on-one?  Does anyone think what they do now is have tutors come over
once in a while for extra help, vs. therapists coming over for discrete
trial, ABA type intervention?  I guess it doesn't matter what it is called I
would just like someone to describe now what they do that is extra for their
recovered children.  Also, has anyone hit kindergarten or 3rd grade or some
other milestone and then needed to restart a home program to assist with the
more difficult material in the classroom?  Last question for now, anyone
have children much older, like in middle school or high school that are
recovered and indistinguishable?  I'd love to hear all of your stories.
Christopher is 3.8 years and has had a home program for 11 months now.  He
also attends preschool for 9 hours a week and his shadow faded after about 2
months.  He receives approx 25 hours of one-on-one besides school and goes
to speech therapy 2x a week.
Thank you for starting and contributing to this important list
Susan

Thanks for the info Louise - I am was very interested in your post.  It is
wonderful/amazing that you have your child in K (and more) with still so
much ABA.  When you said "We are now concentrating on.. verbal reasoning,
word retrieval, general knowledge, asking appropriate questions etc..." I
tried to imagine those challenges and how you would focus on these ?? with
ABA ?? with discrete trials ??  How do you fund ABA with the privacy of the
your son's history now that he is school-aged?  I can only imagine you are
doing that on your own...

I know that for every parent with a positive experience i.e. recovering
child, so many more parents what to know Why? How? When? - everything that
we can only learn for ourselves as dictated by our child, town, place in
time, various other individual limitations.  I am rambling... just happy to
read what is here.

Thanks again wnd Welcome,
Kelly

Lynette,

If/when you have the time, would you be able to tell us more about FF?
I've been looking into it for a while and am really interested. Our SLP
is FF certified but does not offer it. She went throught the training but
disagrees with the expense versus what she thinks most kids would get out
of it, so therefore has decided not to provide it. She has given me the
name of another provider in my area should I decide to pursue it.

According to what I've heard about FF they believe that one of the key
elements is that the kids don't hear the sounds correctly - I think that
Adam hears the sounds just fine. What do you think? Also what was Reagan
like prior to FF and how much did she improve. Is FF just for improving
receptive language or is it geared for expressive also (Adam has more
expressive issues)? I've also heard that you can do it at home rather
than going to the SLP's every day - is this what you did? Does FF really
differ from all the other software packages that you can get at the store
for $29 and/or is it the intensity that makes it different? Sorry for all
the questions.

Thanks
Louise

Hi everyone,

My name is Louise and I am a stay-at-home mom from the metro Detroit
area. I have three wonderful kids a 6 1/2 year-old daughter, a 5 year old
son and a 2 year-old son. It's my middle child Adam that brings me here.

My son Adam is 5.5 and I don't actually consider him totally recovered
but getting there. My consultant thinks we have almost lost our
objectivity and thinks a lot of what we notice, other people would not
see. He attends regular kindergarten (the school does not know he has a
diagnosis), he does not have an IEP or receive any help at all from the
school. He received a diagnosis of "mild PDD-NOS (atypical autism)" from
a well know psychologist when he was 3 ½, prior to that at 2 ½ he had a
diagnosis or "mixed developmental delay."

I knew something was wrong at about the age of 12 months when within
about a 3-week period his personality "changed." Though he truly did not
lose any ability he had, he became strikingly more solitary, lost a lot
of eye contact; his babbling diminished, plus several other things. He
also started to stare at objects weirdly and started to use a very
bizarre tone of voice (the froggy voice we called it) when he baby talked
(he was still not using any real words). Looking back now I realized that
there were earlier signs like the fact that he never reached to be picked
up. Of course I was worried but because I still saw the old regular
behavior I tried to convince myself that all was fine. At this time he
was also diagnosed with 50% hearing loss in both ears due to multiple ear
infections. So of course everyone tried to link the lack of speech with
the hearing loss. After the ear tubes were put in things did not improve,
so we began speech therapy. He began speech therapy at 18 months and did
really well. By the time he was 3 ½ and received the PDD diagnosis he had
a vocabulary of almost 1000 words (mainly nouns and verbs) and could put
together a short sentence, mainly to express a need "I want cookie."

After his diagnosis I finally realized that it was not just a language
delay that we were dealing with and decided that we needed a more
comprehensive program. We tried Greenspan's Floortime program for 6
months with little improvement. Then we started ABA. Initially we did
only 15-20 hours a week and he attended a Preprimary Impaired Preschool.
After only a few months he improved so dramatically that we moved him to
a regular private preschool. He gained 21 months in language development
in the first 8 months of ABA therapy. Things are not so dramatic right
now but progress continues! He has a 25-30 hour ABA program plus of
course K and some after-school activities. We are now concentrating on
weak areas such as verbal reasoning, word retrieval through fluency
building, general knowledge, asking appropriate questions (not just any
question but one related to what's going on), visualizing (seems to have
a big problem remembering what things look like that are not in front of
him) - this affects his drawing skills as well as overall recall,
strength building in his upper body, telling and retelling stories, plus
other things. He still has some noncompliance issues that I need my  team
to squash immediately because I just learned that he "debates" with the
teacher at school as to what he is and is not going to do. Socially he is
OK but often tends to drive people nuts with his limited interests. Right
now he's into Pokemon. His converasational speech is also a bit off - but
I don't know how to describe it - it's like he responds without
completely considering what the other person just said (though this is
not always obvious).

That's the CONDENSED version of our history. Sorry it's so long!

Take Care,
Louise

Lynette and Kelly,

Thank you for joining this new list. I hope it grows very large. When I first
put out the word, about 30 people responded, so that's an encouraging number.
I know there are more of us out there, and I hope they find their way onto
the list as well. Right now, this list is not going to be censored and no
topics are banned. Everyone is welcome, even if they don't have recovered
children.

My own daughter is five and in a regular kindergarten. The teachers and some
of the staff know of her diagnosis. I hope word hasn't gotten all around the
school, although I wouldn't be too surprised if it has. We plan to move next
year.

Unfortunately, my daughter's case is a very managed recovery because she had,
and still has, various physical problems. She still can't run very well and
being able to clap is a recent development. Deep down, I know she was one of
the kids who would have had severe, progressive autism if it wasn't treated.
Aside from horrible behavioral difficulties, her hair was falling out and she
was beginning to sleep 16 hours a day, until we did dietary interventions.
Once we removed milk and gluten, the change in her was pretty dramatic. We
then scrambled around for an ABA program.

On the surface, all looks well. Behind the scenes, my husband and I work very
hard to maintain her fragile health. But she is getting stronger.

Patricia

Dear Lynette,

I think I have read posts from you about Reagan in the past, must have been
on the me-list. I have been mostly just reading there since Spring 99.  I am
grateful to learn about your experience.

-Kelly
----- Original Message -----
From: Lynette Rorer <lnett@...>
To: <RecoveredKids@onelist.com>
Sent: Friday, December 03, 1999 1:54 AM
Subject: [RecoveredKids] Intro


> From: Lynette Rorer <lnett@...>
>
> Hi all!
> My name is Lynette Rorer. I have a six and a half year old daughter,
> Reagan who is delightfully recovered from autism.
> I have been on the me-list since summer or 95. It is wonderful now to be
> able to participate in discussions about recovery.
> Reagan is in first grade at a private school and flourishing in a class
> of 12. She did Fast ForWord in the summer which dramatically improved
> her converstaional speech. She is constantly talking now, telling about
> her day at school, things her friends said and did, and it's really
> wonderful. We had such a struggle getting to this point and I finally
> feel like she has made it.
> Reagan's only remaining weakness is in the area of verbal reasoning. I
> look forward to hearing ideas from you all on how you worked on this
> issue, and also if there are others like Reagan who still need help with
> this.
> We still have two of our therapists who we just can't seem to get rid of
> ;)! They come each only once a week, they are dear friends now.
> I am excited about this list! Hope to hear from all of you soon. Lynette
>
> > Community email addresses:
>   Post message: RecoveredKids@onelist.com
>   Subscribe:    RecoveredKids-subscribe@onelist.com
>   Unsubscribe:  RecoveredKids-unsubscribe@onelist.com
>   List owner:   RecoveredKids-owner@onelist.com
>
> Shortcut URL to this page:
>   http://www.onelist.com/community/RecoveredKids
>
>

Hi all!
My name is Lynette Rorer. I have a six and a half year old daughter,
Reagan who is delightfully recovered from autism.
I have been on the me-list since summer or 95. It is wonderful now to be
able to participate in discussions about recovery.
Reagan is in first grade at a private school and flourishing in a class
of 12. She did Fast ForWord in the summer which dramatically improved
her converstaional speech. She is constantly talking now, telling about
her day at school, things her friends said and did, and it's really
wonderful. We had such a struggle getting to this point and I finally
feel like she has made it.
Reagan's only remaining weakness is in the area of verbal reasoning. I
look forward to hearing ideas from you all on how you worked on this
issue, and also if there are others like Reagan who still need help with
this.
We still have two of our therapists who we just can't seem to get rid of
;)! They come each only once a week, they are dear friends now.
I am excited about this list! Hope to hear from all of you soon. Lynette

It's such a coincidence that I got my invite to join the list just now.  I
noticed the email about this list immediately after sending out an appreciation
email to my son's team.  I am very lucky to have all of his ABA, SLP, OT, etc.
people on-line.  I send out emails and hit everyone in one shot :o)

My son was dx with mild-moderate autism by his 3rd birthday late last Feb.  I
started my son Gluten and Casein Free in Feb.  Within the next 2 months, I
pulled an ABA program and other services together out of the abyss of rural
Maine.  All this just in-the-nick-of-time because my small son was loosing
almost all of his feeble language and VERY withdrawn.  Our life is a
rollercoaster - explosions of progress... stuck (oh no are we loosing
ground?)... more progress... (repeat).  Everything seems to indicate that we
have a fair shot at whatever "recovery" means - although we have a long way to
go.   We are only just now starting play dates and shopping for a winter
preschool placement for socialization.

The email I just sent to my son's team best describes why I want to participate
on this list:
   I know, as parent, I can get over-excited with some of J's little successes. 
But I am flush in the face now as I finally withdraw from J's room for the
night.  I was determined to have both of my children asleep by 8:30 tonight. 
But the reading was so much fun.  Then Daddy came home.  Then J found an old
puzzle under his bed and REALLY started talking.  I am sending this email to the
group because I MUST share this evening's excitement with all of you making this
possible.

   All this from J's lips to my ears in a span of about 20 minutes:
     a.. Here you go, right there. (playing with puzzle of two potato heads in a
messy kitchen)
     b.. Make it mom.
     c.. Make Potato Head puzzle.
     d.. Make a pancake - good going.
     e.. Mom, want hat? (referring to puzzle piece of hat)
     f.. See, right there.
     g.. Cooking in the house.
     h.. I need my hat. (speaking for Mr.Potato Head)
     i.. Yes, in the oven.  (very pleased with himself with "yes" repeating yes
with playful pronunciation)
     j.. What do I do now mom?
     k.. I'm making Potato Head making a pie.
     l.. I know,...
     m.. I need my mustache up here. (moving puzzle from floor to bed)
     n.. They match.
     o.. I need my helmet. (mom drawing space stuff now)
     p.. Make a rocket.
     q.. Where are the eyes?
     r.. See.
     s.. Here you go, right there.
     t.. Where is my arm? Found it.
     u.. Is J a man?  J and Daddy man. (Asked&Answered this out of nowhere.)
     v.. It is too heavy. (moving small table across floor.)
     w.. Space Shuttle flyed in the sky.
     x.. Happy.  Sad.  It's time to go home now, give me back my toy. (looking at
happy and sad drawings that P made)
     y.. My turn - the pen - the chalk.
     z.. Wait over here - helmet in the rocket.
   These are only the highlights - there was allot of filler.  J wouldn't stop. 
I left out the basic stuff that we hear often.  I know none of you will believe
that this all happened with barely a word from me... I am never speechless.  But
I think you could fairly say I interjected 1 word for his every 10 or 20.  I was
so stunned by all that was being said, I had to just listen.  It's been a long
time since I absolutely had to run and get a pen and write down something J was
saying.

   I hope he shares this growth with all of you when you see him in Dec.  I feel
really good right now.
My excitement is partially fueled by the fact that we just discussed introducing
WH questions during the last workshop/team meeting Tuesday night.  It's not the
quantity of language that excites me anymore but the stuff above has a new
quality.  My son hasn't been asking questions.  We are just now introducing
attributes, associations, pronouns, the yes/no drill, etc.  We have mastered
about 60 drills in < 8 months including (as it relates above) recently genders
and emotions.

Working for "recovery" or "fullest potential" with early intervention can be so
exciting, hopeful, exhausting, scary...  I hope this list grows.

Kelly