Here is your update on the TACA (TALK ABOUT CURING AUTISM) Group for April 2003 - #3. As always, email your thoughts and or questions.
I want to make this e-newsletter informative for you. Let me know your thoughts on how I can improve it.
==================================================================
IF this email is NEW to you and you don't recognize the name... WELCOME! These emails happen two to four times a month for Southern California Autism support called TACA.
We focus on parent support, parent mentoring, gluten / casein free diets, the latest in medical research, special education law, reviews of the latest treatments, and many other topics as it relates to Autism.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
---------------------------------------------------------------------------------------------------------------------
TACA has an official web site at www.talkaboutcuringautism.org
---------------------------------------------------------------------------------------------------------------------
In this edition of TACA e-news:
- Next TACA Meeting Information (oops, date correction from last TACA e-news!)
- Upcoming TACA Schedule & other TACA meeting schedule info – May - August 2003
- General News:
- Two Articles from TACA Moms!
- New resource for medical testing blood draws in Southern California
- Discounted Products for Sale @ next TACA Costa Mesa Meeting
-----------------------------------------------------------------------------------------------------------------
1) Next TACA COSTA MESA support group meeting:
Date: Saturday, May 10th, 2003 (always the 2nd Saturday of each month)
Time: 2:30 - 5:30
School Shadowing.- What to look for and What to avoid!
Presented by Autism
Spectrum Consultants – Jessica Postil
PLACE: VINEYARD NEWPORT CHURCH - 102 East Baker Avenue - Costa Mesa
(Please do not contact the church for meeting details. They have graciously offered use of their facility, but are not affiliated with TACA.)
Directions:
405 FWY South, Exit Bristol
Right on Bristol
Left on Baker
Go under FREEWAY.
The Vineyard church is on the corner just after the FWY - turn left onto the freeway access road, MAKE FIRST right into the Vineyard's parking lot.
And remember, we are still a non-faith based group!
CONTACT PHONE FOR DAYS OF THE MEETING ONLY: 949.678.9010
Please do NOT use the cell contact for days outside of the meetings. Thank you!
-----------------------------------------------------------------------------------------------------------------
2) UPCOMING TACA Costa Mesa Meeting Schedule:
June To be Determined 2003: Rescheduled Dr Jerry Kartzinel Medical Seminar
June 14, 2003: Kirkman Labs – the new world of supplementation
July 12, 2003: Child Neuropsychologist: Dr Christine
Majors
- What is in a test and
outside evaluations? Why are they important?
- Where should you start? How should you continue?
August 8, 2003: Who pays for WHAT SERVICES?
Parent options for PAYING services for their children.
Much more is being planned for September – December of 2003! Stay tuned!
--------------------------------------------------------------------------------------------------------------------
TACA has FIVE So. California meeting locations:
1) Costa Mesa: 2nd Saturday of each month (info in item #1)
2) West Hills (the valley man!): the 1st Sunday of every month, on the Cal State University Northridge Campus in the Early Intervention Psyche Clinic... - Info: Contact Us
3) San Diego: 4th Tuesday evening – 6:30- 8:00pm – Info: Contact Us
4) Corona: 3rd Saturday – 2:30pm – 5:30pm – Info: Contact Us
5) Torrance: 3rd Monday of each month at Whole Foods Market on PCH In Torrance – 6:30-9:00pm. Info: Contact Us
--------------------------------------------------------------------------------------------------------------------
3) General News: 2 important articles
IDEA LAW
From Gil Murillo at www.PROJECTSEA.org
I KNOW I HAVE ASKED YOU AGAIN AND AGAIN TO CONTACT YOUR CONGRESS REPRESENTATIVE….HR 1350 GOES TO THE FLOOR ON THE 29TH AND WITHOUT YOUR VOICE AND OTHERS, OUR CHILDREN WILL LOSE. PLEASE HAVE YOUR NEIGHBORS, FAMILY, FRIENDS, COLLEGUES, MAILPERSON, ANYONE MAKE A CALL. IF WE MAKE OUR VOICES HEARD, THEY JUST MIGHT LISTEN. IF HR 1350 PASSES, OUR CHILDREN WILL LOSE. REMEMBER, OUR REPRESENTATIVES MUST TAKE YOUR CALL EVEN IF YOU DO NOT SPEAK ENGLISH, JUST SAY “NO HR 1350 AND YOUR ADDRESS”.
On April 29, call and fax Congress and tell them to vote NO to H.R. 1350, a bill that would severely weaken the rights of children with disabilities under the Individuals with Disabilities Education Act and jeopardize the quality of education they will receive. If H.R. 1350 passes, children with
disabilities will be seriously hurt. ****No one will protect your children
except you, so now is the time to call or fax.*** The House could vote on the
bill as early as April 30, so join other parents and advocates in contacting
Congress on April 29 (or earlier, if you wish!!!) .
(If someone told you the day to call and fax was May 1, its been moved to
April 29 because the vote could happen on April 30).
The bill completely undermines the IDEA and removes key protections for disabled children. It allows schools to expel them for any conduct violation
or move them to an alternative setting (e.g. if a child w/autism or ADHD gets
out of his seat, shouts out, or a child with CP has inappropriate contact);
allows IDEA money to be spent on other things instead of disabled kids (so
schools can raid the cookie jar); does not fully fund the IDEA; guts procedural protections tha parents have; eliminates short-term objectives
from IEPs after 2005; lets 10 states possibly eliminate IEPS; transition and
inclusions documentation; documentation of testing accomodation and other
documents all together; eliminates the requirement that schools provide
positive behavioral interventions and Functional Behavioral Assessments; and
lets schools spend unlimited money on their lawyers while letting Governors
limit the amount parents can spend.
The bill also includes a 13.5% limit on the number of disabled kids in any
state, allows cases to go to arbitration instead of a hearing and makes the
arbitration result final (even if the arbitrator violates the IDEA); allows
schools to eliminate triennials and use 3 year IEPs (unless the parents
object, but many parents will not know enough to object), allows IEP team
members to be excused from meetings, will only require one regular-ed teacher
to attend the IEP (so if your child's problem is in Math, the Social Studies
teacher could be there instead), and only the part dealing with regular ed,
and makes other harmful changes.
If you are worried about your child's IEP, its important to let Congress know
how you feel about this bill! Please call or fax your Congressperson.
http://www.congress.org contains their Washington DC and also local hometown
phone and fax information. So, its not even a long distance call. Just enter
your zipcode and click on INFO under your Congressman's name. Please call or
fax them! Emails can sit on
Congressional computers for days and get ignored or read by interns.
If you email, follow up with a call. If you don't mind calling Washington DC
and know your Congressman's name, dial 202-224-3121 and ask for his office
and you will be connected. (You can also find phone and fax info at
http://www.house.gov on each Congressman's webpage)
To read more about H.R. 1350 and what it will do to disabled children, visit
these sites. (The information on them was written before the full Education
Committee voted on the bills, but these parts of the law were not changed,
so the info about the bill is still correct.)
http://www.dredf.org/ActionAlertA3.html and
http://edworkforce.house.gov/democrats/rel4903.html The DREDF site should
also contain a new action alert on Monday which will describe some of the
additional amendments in detail, http://www/dredf.org . If you're not sure
what to tell your Congressperson, visiting these 2 sites should give you some
good ideas. You only have to write 2 paragraphs in your letter; it doesn't
have to be long.
THE SCHOOL DISTRICTS ARE BEING HEARD ABOUT HR 1350; PARENTS AND THEIR
ADVOCATES ARE NOT. At the House Education Committee meeting to markup the
bill, several Congressmen referred to phone calls they had had with School
District administrators and attorneys. They seemed to be unaware that parents
were e-mailing them. WE MUST BE HEARD TOO, IF WE ARE TO PROTECT OUR
CHILDREN. CALL AND FAX YOUR CONGRESSMAN ON APRIL 29; it will only take a few
minutes. Or, do it earlier: any day between now and then.
IF YOU CANNOT FAX AND NEED TO SEND AN EMAIL, go to go to
http://www.house.gov/writerep/ Then, follow up with a CALL and briefly tell
the aide why you oppose H.R. 1350. Your 3 minutes on the phone can make a
real difference. Phone calls are taken very seriously because it takes a lot
more energy to make them than sending an email. No one will give you a hard
time or keep you on the phone for a long time. The time to act is NOW! No one
will protect your child's rights except you. On April 29, call and fax Congress and tell them to vote NO to H.R. 1350, a
bill that would severely weaken the rights of children with disabilities
under the Individuals with Disabilities Education Act and jeopardize the
quality of education they will receive. If H.R. 1350 passes, children with
disabilities will be seriously hurt. ****No one will protect your children
except you, so now is the time to call or fax.*** The House could vote on the
bill as early as April 30, so join other parents and advocates in contacting
Congress on April 29 (or earlier, if you wish!!!) .
(If someone told you the day to call and fax was May 1, its been moved to
April 29 because the vote could happen on April 30).
The bill completely undermines the IDEA and removes key protections for
disabled children. It allows schools to expel them for any conduct violation
or move them to an alternative setting (e.g. if a child w/autism or ADHD gets
out of his seat, shouts out, or a child with CP has inappropriate contact);
allows IDEA money to be spent on other things instead of disabled kids (so
schools can raid the cookie jar); does not fully fund the IDEA; guts
procedural protections tha parents have; eliminates short-term objectives
from IEPs after 2005; lets 10 states possibly eliminate IEPS; transition and
inclusions documentation; documentation of testing accomodation and other
documents all together; eliminates the requirement that schools provide
positive behavioral interventions and Functional Behavioral Assessments; and
lets schools spend unlimited money on their lawyers while letting Governors
limit the amount parents can spend.
The bill also includes a 13.5% limit on the number of disabled kids in any
state, allows cases to go to arbitration instead of a hearing and makes the
arbitration result final (even if the arbitrator violates the IDEA); allows
schools to eliminate triennials and use 3 year IEPs (unless the parents
object, but many parents will not know enough to object), allows IEP team
members to be excused from meetings, will only require one regular-ed teacher
to attend the IEP (so if your child's problem is in Math, the Social Studies
teacher could be there instead), and only the part dealing with regular ed,
and makes other harmful changes.
If you are worried about your child's IEP, its important to let Congress know
how you feel about this bill! Please call or fax your Congressperson.
http://www.congress.org contains their Washington DC and also local hometown
phone and fax information. So, its not even a long distance call. Just enter
your zipcode and click on INFO under your Congressman's name. Please call or
fax them! Emails can sit on
Congressional computers for days and get ignored or read by interns.
If you email, follow up with a call. If you don't mind calling Washington DC
and know your Congressman's name, dial 202-224-3121 and ask for his office
and you will be connected. (You can also find phone and fax info at
http://www.house.gov on each Congressman's webpage)
To read more about H.R. 1350 and what it will do to disabled children, visit
these sites. (The information on them was written before the full Education
Committee voted on the bills, but these parts of the law were not changed,
so the info about the bill is still correct.)
http://www.dredf.org/ActionAlertA3.html and
http://edworkforce.house.gov/democrats/rel4903.html The DREDF site should
also contain a new action alert on Monday which will describe some of the
additional amendments in detail, http://www/dredf.org . If you're not sure
what to tell your Congressperson, visiting these 2 sites should give you some
good ideas. You only have to write 2 paragraphs in your letter; it doesn't
have to be long.
THE SCHOOL DISTRICTS ARE BEING HEARD ABOUT HR 1350; PARENTS AND THEIR
ADVOCATES ARE NOT. At the House Education Committee meeting to markup the
bill, several Congressmen referred to phone calls they had had with School
District administrators and attorneys. They seemed to be unaware that parents
were e-mailing them. WE MUST BE HEARD TOO, IF WE ARE TO PROTECT OUR
CHILDREN. CALL AND FAX YOUR CONGRESSMAN ON APRIL 29; it will only take a few
minutes. Or, do it earlier: any day between now and then.
IF YOU CANNOT FAX AND NEED TO SEND AN EMAIL, go to go to
http://www.house.gov/writerep/ Then, follow up with a CALL and briefly tell
the aide why you oppose H.R. 1350. Your 3 minutes on the phone can make a
real difference. Phone calls are taken very seriously because it takes a lot
more energy to make them than sending an email. No one will give you a hard
time or keep you on the phone for a long time. The time to act is NOW! No one
will protect your child's rights except you.
IDEA sample letter from our very own Dale – a mom
Dear Friends:
Below is a letter I wrote to my congressman. Feel free to copy/modify to
fit your personal story. www.congress.org is the site you can find out
exactly who your rep. is by putting in your zip code plus 4 digit which you can
get at the site.
PLEASE CALL, E MAIL AND SNAIL MAIL TO GET THE POINT ACROSS. OUR CHILDREN
CAN'T - SO WE MUST.
Have a great day.
Dale
April 24, 2003
Congressman Ken Calvert
3400 Central Avenue #200
Riverside, CA 92506
PHONE 949-496-2343- FAX 909-784-5255
RE; BILL H.R.1350
Dear Congressman Calvert,
Please vote NO on HR 1350 April 29th. This bill completely undermines the
I.D.E.A. and removes key protections for my 9 year old son who has
autism. My family would be severely impacted by this bill.
The bill includes a 13.5% limit on the number of disabled kids in any state,
allows cases to go to arbitration instead of a hearings, allows schools to
eliminate annual IEP and use a 3 three IEP, and will only require one teacher
to attend the IEP. Most importantly is will ELIMINATE THE REQUIREMENT FOR
SCHOOLS TO PROVIDE POSITIVE BEHAVIORAL INTERVENTIONS AND FUNCTIONAL BEHAVIORAL
ASSESSMENTS - which are critical to the early intervention of children with
autism to achieve success in their educational setting.
I have struggled for eight years for my son to receive an appropriate education
in Orange County - which has helped him
dramatically. He communicates through a picture exchange program and can
express his wants and needs. If this bill is passed he will surely
regress.
Autism is an epidemic, 1 in 250 children suffer and South Orange County is experiencing a huge
wave of children being diagnosed annually. Please vote NO on 1350 and
protect the rights of children here in Orange County.
I read your statement on your web site "We have now begun a mission to rid
the world of the most significant threat to peace…….are willing to FIGHT FOR
FREEDOM AND DEMOCRACY." PLEASE FIGHT FOR THE FREEDOM OF OUR
AMERICAN DISABLED CHILDREN TO RECEIVE AN EDUCATION AND SUPPORT THEIR RIGHTS.
Thank you.
Sincerely,
Dale A. Wood
STATE BUDGET CRISIS:
Dems Offer Partial State Budget Plan – Repubs Turn It
Down
Assembly Speaker
Wesson Offers Partial Budget Solution to Close Deficit; Assembly Republicans
Reject Proposal Unless More Cuts Are Made
THIS REPORT COMES FROM: Marty Omoto's CA UCP Capitol Report #40-2003
Assembly Speaker Herb Wesson (D-Culver City),
proposed a controversial package of $5.9 billion of spending cuts and
deferrals, loans, funding shifts and fees - including implementing parental
co-payments for minor children with developmental disabilities, and a pension
obligation bond, Wednesday evening (April 23) that would be a partial
solution toward closing the California budget shortfall estimated as high as
$35 billion. Most of the cuts in the Wesson proposal were previously proposed
by Governor Davis. The Wesson plan, endorsed by Governor Davis, does not
call for tax hikes - though it does call for some new or increased fees.
In March the Legislature passed and the Governor
approved a package of spending reductions, funding shifts and adjustments for
the current fiscal year (which ends June 30) that totaled just over $3 billion,
and an another $4.8 billion in spending reductions for the new budget
year that begins July 1. In addition, Assembly Democrats in March assumed
that the trigger to reinstate the vehicle license fee will be pulled by state
officials by July 1, generating about $4 billion and that another $1.1 billion
would be raised by a change in accounting for the Medi-Cal program (the change
does not impact people receiving services or to providers). The combined total
reductions, fund shifting, revenues passed in March totals about $13.1 billion.
Taken together, the actions in March and the new
Wesson proposal announced April 23, would result in an estimated $19 billion in
spending reductions, fund shifts, loans, fees and revenues would go toward
reducing the projected state budget deficit estimated as high as $35
billion. However additional major reductions totaling several billions of
dollar would still be necessary even if Wesson's proposal was passed.
Assembly Speaker Wesson's new plan calls for:
* Spending Cuts and deferrals
- Health/Human Services (cut -
$493 million)
- Non-Prop 98 Education and
Higher Education (cut - $272 million)
- General Government/Local
Government/Criminal Justice (cut - 1.706 billion)
- Resources and Environmental
Protection (cut - $31 million)
Total:
$2.502 billion
* Pension Obligation Bond
Total: $2.2
billion
* Other fund shifts, fees, loans &
transfers Total: $1.2 billion
GRAND TOTAL: $5.9 billion
Wesson's proposal includes parental co-payments
services for their children with developmental disabilities who have incomes
200% above the federal poverty level, and is not listed as a "cut"
but as a "fee" in his proposal. Advocates however claim that
the fee is a major cut - and is in addition to the other proposed cuts that the
Governor has proposed.
The proposal by Wesson to issue state bonds to
cover the payments by the California
to the public employee and teacher pension funds is considered controversial.
The non-partisan Legislative Analyst Office, who reviews budget issues for the
Legislature, recommended against such a bond sale. No state,
according to the Legislative Analyst Office, in the nation has ever used
pension bonds to pay off general government debts, though Assembly Republicans
are willing to consider the idea if it was coupled with additional spending
reductions to the current year budget.
Some Highlights Of Speaker Wesson's Proposal
Impacting People With Disabilities:
* Regional Centers/Parental Co-Payments
- What Was Proposed: Would, presumably
based on the information sheet from the Speaker - implement the Governor's
proposed co-payment for services and supports by parents for their children
with developmental disabilities whose income is 200% above the Federal Poverty
Level. This would raise about $32 million, and is listed in the Assembly
Speaker's proposal as a "fee" and not as part of the cuts to Health
and Human Services. Many advocates claim that the co-payment proposal is a
major cut to families who need services, in addition to other cuts in community
services and supports that the Governor is proposing.
Still on the table - but not part of Wesson's
proposal is the Governor's other proposed reductions impacting people with
developmental disabilities, including what advocates claim is the outright
elimination of the "Lanterman Developmental Disabilities Services
Act". That act makes California
the only state in the nation to have a specific civil rights act for people
with developmental disabilities.
Proposed Cut: $32 million (listed as revenue/fee
in the Speaker's/Governor's proposal) (Dept of Developmental Services)
Who is Impacted: Parents with children with
developmental disabilities between ages of 3-17 years with income 200% above
the federal poverty level. Indirect impact to community based providers and
vendors who serve this population - with the presumption that parents who are forced
to make choices of whether to continue services or pay for other necessities
(such as housing and food) will opt out of services.
* Supplemental Security Income/State
Supplementary Program (SSI/SSP)COLA
- What Was Proposed: Would suspend
the SSI/SSP cost of living adjustment for 2003-2004 (effective January 2004).
Note: this is in addition to the suspension of cost of living adjustment for
the current year that the Legislature already approved in March. This proposal
by Wesson does not include - yet - the Governor's proposal to roll back grants
to the federal minimum level, which is still under consideration.
Proposed Cut: $92 million (Dept of Social
Services) Who Is Impacted: People with developmental and other disabilities,
seniors, and other people who depend on SSI/SSP for housing, etc.
* MEDI-CAL/Dental Optional Benefit
- What Was Proposed: Would cap, but
does not eliminate as the Governor proposed, dental services under Medi-Cal to
bring program "more in line with private dental insurance plans". The
other optional benefits that the Governor proposed to eliminate are not part of
this particular spending proposal and is still under consideration.
- Proposed Cut of $50 million (Dept
of Health Services) - Who Is Impacted: People with developmental and other
disabilities, seniors, people with low incomes
* MEDI-CAL/County Administration
- What Was Proposed: Would implement
Medi-Cal county administration "accountability" resulting from
caseload reductions and "additional staff and accountability
standards".
- Proposed cut: $194 million (Dept
of Health Services) - Who Is Impacted: Direct impact to counties - and indirect
but likely impact to people receiving Medi-Cal services.
* Other MEDI-CAL Proposed Cuts
- Eliminate Medi-Cal Fee For Service
Managed Care in Placer and Sonoma Counties (Proposed Cut of $1,196,000)
* Dept Of Rehabilitation/Vocationalrehabilitation
- What Was Proposed: Would reduce
vocational rehabilitation program staff (proposed cut of $493,000) and
"adjustment" vocational rehabilitation program (proposed reduction of
$601,000)
* Dept Of Rehabilitation/Habilitation Services
- What Was Proposed: Would
consolidate Habilitation Services Program (work activity and supported
employment programs for people with developmental disabilities) within regional
centers - Proposed Cut ($2,200,000) - Who Is Impacted: People with
developmental disabilities in these programs; staff and community-based
organizations who provide these services; regional centers Other proposed cuts
included
* Mental Health - State Hospitals - Would make
reduction as a result of savings due to lower caseloads (Proposed Cut: $14
million) - Second Level Treatment Authorization - Proposes to eliminate the
second level treatment authorization request appeals (Proposed Cut: $64,000) -
Early Mental Health Services Grants - eliminates next round (Proposed Cut: $5
million) - Early Mental Health Services/State Operations - would eliminate
(Proposed Cut: $439,000) - Managed Care - would deny cost of living adjustment
(Proposed Cut: $6.7 million)
* Aging/Seniors
- Proposed reduction of adult day
health care program (Proposed cut: $39,000) - Eliminate senior and housing
information center (Proposed cut: $787,000)
What Do These Actions Mean?
At this point, nothing, unless Assembly
Republicans are able to convince Assembly Democrats (and the Senate) to go
along with deeper cuts to current year spending - and as a result, the Wesson
proposal is able to pass.
However the list of cuts in the Wesson proposal
is an indication of what - at least for now - the Assembly Democrats are
willing to concede.
Next Steps
* Assembly Democrats - The Assembly Democrats
plan to introduce and move on the Wesson package next week in the Assembly -
though it faces many obstacles for passage. The package would need 2/3rds
approval from both houses - meaning it would need every Democrat in both houses
to vote for it, plus at least 6 Republicans in the Assembly and 2 Republicans
in the Senate. At this point it doesn't seem likely.
* Assembly Republicans - flatly rejected
the proposal unless additional cuts were made to spending to current year spending
in addition to the coming budget year. Assembly Republicans indicated
Wednesday night that if the Democrats would propose larger spending cuts in the
current year - Republicans would consider the proposed bond.
* Assembly - meanwhile budget subcommittee
hearings on several budget issues (none directly impacting people with
developmental disabilities) will continue through the end of April. No major
actions have been taken to date.
* Senate - support for the Assembly Democratic
proposal in the Senate - even among Democrats, is far from certain.
Senate President Pro Tem John Burton (D-San Francisco) reportedly voiced his
opposition to many of the key spending cut proposals. Senate budget
subcommittees also are continuing meetings to hear several pending budget
issues, through the end of April/ The only major action taken to date is
that the Governor's proposals for complete "realignment" of certain
health and human services to counties were rejected - though it is not certain
what will happen next. Actions on most of the Governor's proposals - including
proposed major reductions to Medi-Cal, community-based services for people with
developmental and other disabilities, will be deferred until probably the week
after the Governor releases the revisions to his proposed 2003-2004 budget.
* Governor - he and his staff are preparing
changes, adjustments and revisions to the budget proposal that he submitted in
January. Those changes will be released by the Governor on May 14
(Wednesday). Advocates fear additional major cuts to health and human
service programs.
* On April 7th, when both houses held hearings
on this and other related issues, an estimated (by police) 2,500 to 3,000
people with developmental disabilities, families, direct care workers,
providers and other advocates held a rally at the Sacramento Convention Center
and marched on the Capitol and later attended the hearings protesting these
proposed cuts to services for people with developmental and other disabilities.
The rally, march and attendance at the hearings were organized by the
California Communty Advocacy Network, which is planning more direct action in
the coming weeks.
Note: This is a report for
Californians with developmental (& other disabilities), parents and
families, providers and other advocates from the California Coalition of United
Cerebral Palsy Associations. If you would like to get on this distribution
please send an email with that request to: martyomoto@rcip.com. Additions can
be added immediately. Sharing information is part of our organizing
effort. Please feel free to forward/copy this (attribution is nice). Thanks!
Remember - we are all in this together.
For More Information: Marty Omoto, Legislative
Director CA Coalition of United Cerebral Palsy Associations 1225 8th Street Suite 480 Sacramento, CA 95814 916/446-3204 FAX: 916/446-3206 email:
martyomoto@rcip.com Coalition Chair: Michael Williams (UCP of the Golden Gate)
* * *
---------------------------------------------------------------------------------------------------------------------
4) Two great articles from TACA MOMS:
Article #1: Christina Adams is featured in LA TIMES MAGAZINE on April 27th – Check it out!!:
More Than Enough
Stoppage Is a Special Word That the Parents of Autistic Kids
Understand All Too Well
Birth has a special vocabulary. My early pregnancy featured graceful words such as conception and quickening. Three years after having my son, though, I learned a new reproductive word—stoppage. It means deciding not to have more children after your living child is diagnosed with autism.
My attorney husband and I were eager for a child, maybe two, the classic boy and girl set. After winning a stressful trial, he came home to pack for our trip to the mountains. I remember the day, a Friday in January, lying on the bed near a half-filled suitcase. About the time we began to climb the misty mountain road, egg embraced sperm and our son was conceived.
A precocious blond baby with big blue eyes, he spoke at 9 months ("dog" and "necklace"). Tall at 18 months, he happily recited the alphabet. Then he turned hyperactive. We were too busy chasing him to notice how his speech became echoes, how he played with water and lights and cried with terror at the vacuum cleaner's roar.
When he was nearly 3, after three miserable weeks, his first preschool's director said, "Sorry, he's autistic," and threw us out.
We didn't believe it. The speech therapists I called said it was impossible: He's sociable and talks too much. After the teacher at his new school mentioned that he resembled her autistic nephew, in a panic we called our niece, who teaches autistic children. She said she'd known a month earlier. "So it's true," I said. "I'm the mother of an autistic child."
These words horrify me now with their self-absorption. But they were my attempt to realize the truth, to place myself in an awful new universe.
Autism, a once-rare neurological disorder, is alarmingly common these days. There are 10 boys and two girls in our neighborhood who are autistic. L.A.-based Cure Autism Now quotes federal estimates that one of every 250 U.S. children are autistic. In California, the rate (excluding milder forms such as Asperger's syndrome) has jumped to 10 new diagnoses per day. No one knows why; one theory is that genetically susceptible children are pushed into the disorder by vaccinations, diet or heavy antibiotics. Others simply emerge autistic into the world.
Autism is a black hole, capable of crushing personality, reason and affection. It has no known cause or cure. Forty percent of afflicted children never speak, while about 25% display average to advanced intelligence and language, but possess poor social skills and are considered odd.
Slowly, the signs became evident to us. Frustration or noise made my son bang his head or bite. He and I became a colorful pair, his head with its blue-yellow bruises, my arms purple with bite marks. His fear of vacuum cleaners changed to obsession. After the diagnosis, our bright little boy started walking in circles, flapping his hands like a broken-winged dove. Watching his small shoes trace a tightening O on the kitchen floor hurt more than his deepest bite.
Our neighbors with autistic children told us what to do. We removed wheat and dairy products from his diet and sought school district funding for 40 hours per week of behavioral modification therapy. Soon, three therapists came to our home each day, in shifts. They sat our son at a small table and helped him perform tasks while offering play breaks and rewards. There were far-flung doctors, blood tests, medications and three hours a week of speech therapy. In between were depressing books and phone calls to veteran families.
But within 18 months he became the loving, curious child who'd vanished for a time. At 5, he's a happy, singing boy who can lie to cover his mischief (a cognitive milestone). Speech tests reveal high scores and superior reasoning. His only real differences are stubbornness, clumsy social skills, a variable attention span and a fondness for mechanical equipment. To outsiders who know his label, we are unlucky, but in our parallel universe we are among the fortunate.
At the park, strangers ask, "Is he your only one?" Yes, I say, he's like five kids. Or I tell them I have no local family help. But truthfully, I can't handle another child. A kid with autism bears innumerable price tags. Therapies, diets and battles with schools add to the high emotional costs. But it's worth it. Compassion is the painful gift my son has given me.
For some parents, this becomes a soul-opening experience they could not have gained otherwise. For others, depression, divorce, bankruptcy, even suicide ensue. Most of us eventually adjust and soldier on.
Even so, few have additional children after a diagnosis, because we fear a possible genetic risk. My friend with three autistic boys would have stopped had she known, although she's happy she didn't (two have recovered). Stoppage is the rule, not the exception.
I look wistfully at small girls, with their pink dresses and steady talk, but I love my son. He climbs into our bed, shouting "There you are, Mom!" with wild delight. He brushes my hair and paints my toenails. He hugs me so hard it chokes me.
"Am I going to love you for the rest of my life?" he asks me, grinning, and throws himself on my lap.
This devotion makes me cling to him, revel in our hyperkinetic attachment. It makes me think I could have another baby, a girl with our blue eyes. But then I feel the fear. Not only of an autistic child, but a regular child whose abilities might dim my vision of my son. So I hold onto the words of the experts, who say he may lose his diagnosis, work, marry, even have children. Grandchildren would be a great solution to stoppage.
I know a woman whose son has completely recovered. She is pregnant. We other mothers shake our heads at her hubris. She didn't even sperm-spin for a girl, we whisper with awe (autistic boys outnumber girls 4 to 1). I once rode to an autism-mom party with her. The other women in the SUV pumped her about her child, sighing at her success.
"I was just determined he wasn't going to stay autistic," she said.
I was amazed that she would say such a thing to equally driven mothers whose sons can barely function after the same treatments. Then again, only a supremely self-assured woman would tempt the fates again.
When my son turned 4, we went to the Salvation Army church of his baby-sitter, who put him onstage to throw a dollar for each year of his life into a basket.
"How old are you?" asked the pastor before a packed Santa Ana congregation. Answer, I pleaded soundlessly from the back of the room.
"I'm 4 years old," he said.
"And we thank God for your birthday!" she chuckled into the microphone, as everyone watched him, the lone blond boy amid the knot of dark-eyed Latino children. Later, as the brass band played a birthday song, he danced. The pastor spoke in Spanish, and the room roared with laughter.
"He may not speak Spanish," my baby-sitter translated, "but he sure can dance."
I do not believe in God, but I thank him for my son anyway. I am grateful for everything that I once took for granted, because the world is full of children who cannot live the lives their parents had planned. After everything we have been through, he is more than I ever hoped for. In the face of what lies ahead, he is more than enough.
Article #2: Our very own Mary (GFCF Diet queen) writes her story on www.autismtoday.com – check it out!
GFCF. . .The Beginning of Recovery from the Autism Odyssey
Most
everyone remembers the moment they were told their child was autistic. They
remember the feeling, the shock and the true meaning of panic. I wager there
are many out there who remember their first trip to the grocery store when they
finally decided to try the GFCF diet.
Our autism odyssey began at the young age of 16 months when our son's physical
therapist remarked that he was displaying autistic symptoms. By 18 months he
had the diagnosis and by 19 months he was in ABA therapy. At 18 months green "farm animal looking" diarrhea
hit with a vengeance. We're talking about 20 green diarrhea diapers a day and a
child who would scream inconsolably for two hours at a time. When we asked the
neurologist what to do for our son now that we had the diagnosis, all he said
was "Well, don't feed him seawater like I had one parent do. They had
heard that it had magnesium so they went to the ocean for seawater." Now
how is that for desperation on the part of a parent because the doctor could
not help them.
For our part we knew that there had to be an answer for the diarrhea. We got
the usual information from our pediatrician: bland diet, applesauce, etc. So
our moment of desperation included a trip to see a Contact Reflexologist. For
those of you who are unfamiliar with this it is a weird version of
chiropractics. I am not saying it is totally without merit but it must be
challenged as a form to treat autism. The "doctor" had me hold my son
on my lap and then had me hold out my left arm. She put food sources from vials
around my son and then would press on my arm to see if "energy" was
lost. She put up milk and my arm went down like a lead balloon. She put up
wheat and it also went down. She put up a bunch of other allergens and nothing
happened. So she concluded to remove my son from milk right away and then
wheat.
I thought milk was probably easiest to eliminate but was skeptical about wheat
removal. Okay, truth be known, I was more concerned about the inconvenience of
removing wheat. Besides, might she be a crackpot? But within one week of dairy
removal my son stopped waking up screaming after his naps. Inspired I removed
wheat but only half heatedly. The diarrhea never stopped and now my son was
beginning to truly demonstrate autism symptoms by banging his head on the wall
and writhing on the ground.
Thank god for the internet because as I sat in front of my computer crying I
begged prayerfully for any answer. I finally typed in "dietary
intervention autism" and up popped Lisa Lewis' book "Special Diets
for Special Kids" and Karyn Seroussi's book "Unraveling the Mystery
of Autism" . I ordered them right away. Once I understood the WHY to do
the diet, a gluten-free/casein free diet, I began in earnest but did everything
WRONG. First, I wrote down the names of all of the weird flours under the
recipes in the books and then I went shopping. I am sure many of us can relate
to this buying trip because ultimately the flours sat in our pantry for six
months before we used them or tossed them from old age.
Cross contamination was a whole other issue that I didn't fully grasp. Nor was
the overuse of soy an issue at the time. . .until my son got worse. Finally we
buckled down and went 100 percent on the diet and saw a huge change in our
son's behavior. After three weeks on the diet we blew it again and vacillated a
little here and a little there. After a couple of weeks of vacillation we had a
child in FULL regression. I will never forget the OT therapist looking at me in
desperation as my son screamed and flailed. She asked if we had put him on a
new drug because he had lost six months of progress overnight. I cried and said
"It's the diet. He is on drugs and the drug is food." I cried during
a phone call to my husband and swore that I would get better at this but needed
his help. Our son's recovery depended on us getting good at this.
A few months later our son's diarrhea worsened to the point that he fell off
the growth curve. An endoscopy revealed that he had erosion of the esophagus,
stomach and upper intestine. The gastroenterologist could offer no explanation
although she knew about our excessive use of soy. We discovered when we ran out
of soy yogurt that his diarrhea disappeared. Then Lisa Lewis' second book came
out and explained in detail how the overuse of soy causes this type of erosion.
We were fully on the diet for six months when we met up with Dr. Sudhir Gupta,
an immunologist out of University of California, Irvine. He is the immunologist reputable
for his studies of treating autism with immunoglobulin, to build the immune
system and help to heal the brain. After running tests on our son, Dr. Gupta
concurred that he would possibly benefit from starting IVIG infusion. We began
a month later, not really caring whether or not our insurance would pay. We
knew we were battling time to save our son's well being.
The infusions affect were dramatic to say the least. Our son went from two words in January 2002 to full sentences by July 2002. His lab results improved dramatically as well. By the time we visited Dr. Gupta in June for a follow up visit he was looking at a different kid than the one in January. Dr. Gupta was all smiles over our son's progress. He credited the diet first because he noted it would not have been as effective if we were still putting in the "poison" food. By August of last year we met up with his DAN! doctor (Defeat Autism Now) to review his labs and progress. She joyfully concurred that he won the autism lottery and would FULLY recover. We truly knew this would happen (yes, even in the moments of pure hell). It was good to hear, especially when she told us that she hoped we had not touched his college fund because he was going for sure.
It was so much fun to put that part in the Christmas letters we sent.
The DAN! doctor asked me why I believed we were blessed with this set of circumstances while others were still struggling to help their own children. I had to believe that it was because I was meant to help the next parent but I would not be able to do it if we were still working on our son's recovery efforts. We still do IVIG, the diet and look into the next treatment, but we now have the solid hope of recovery.
That said, I knew that it was time to reach out to the next parent by helping
them in ways that I had needed most, but did not receive. I put together a
checklist of sorts of what to do once your child is diagnosed. It is a BASIC
checklist of about ten points which includes getting educated, hooking up with
an autism doctor, buying Lisa and Karyn's books, starting the GFCF diet,
getting good at the GFCF diet, etc. Amazingly I have sent that checklist out or
printed up for dozens of parents as they were beginning the autism odyssey. I
even had to print "business" cards because of how often I was being
asked for my number or email. The title on my business card is - Parent Mentor,
Dietary Intervention for Autism/ADD/ADHD.
Since starting as a self-appointed parent mentor I have been introduced to some
of the most amazing parents, who are initially panicked, but hopeful that they
can help their own children recover from autism. I first explain to them that
there IS recovery in autism and/or improvement of symptoms. I also explain that
they do have the capability to research and implement whatever is needed for
their child. Beyond the hope I also coach them on how to do the diet without
killing themselves in the middle of the grocery store. I am a big believer in
ready-to-eat especially early in the diet. I encourage them to take a gradual approach
by eliminating dairy first for two weeks and then to eliminate gluten one meal
at a time finding five items for each meal that their child will eat. I point
them in the direction of websites to order food and supplements. Bag mixes can
be added once they are beyond ready to eat, and THEN they should branch out and
try a GFCF recipe from scratch.
It is amazing to discuss the condition of some other child's bowel movements
without flinching. We discuss behaviors with the least of chagrins as we move on
to the catalyst of discussing how the doctors were of little help to us. I have
even received phone calls from doctors asking for advice for their children
because their own colleagues were unable to help them. How ironic that another
parent is the one who gave these doctors hope for their child!
---------------------------------------------------------------------------------------------------------------------
5) New Resource for Medical test Blood Draws
THE GREAT PLAINS LAB is offering phlebotomy services provided by,
Kristine Davis LVN. I am the California consultant for GPL. I have worked as a Pediatric Nurse for a majority of my 13 years, licensed. I am both certified in IV and Phlebotomy. In order to protect your child,
I use a papoose and arm board. This has worked out wonderfully!
I do have kits available, if anyone needs them. Please request kits before your appointment.
PLEASE BE SURE TO HAVE A GREAT PLAINS LAB SHEET SIGNED BY A DOCTOR, QUALIFIED NP, PA, OR CHIROPRACTOR, prior to collecting any and all lab work.
I find that the children I have been drawing blood on have been much more relaxed and seem less traumatized by having the procedure done in a home setting. If any parents are interested in opening their home to a group of children in need of labs, please contact me.
Since I am covering a wide area of Southern Ca., I ask that anyone interested in phlebotomy services ask other members of your support group if they need the service as well. If we can't get a group together for your area, I will make arrangements to either come to your house or meet at one of the designated lab sites.
I am currently in the process of setting up lab sites in different areas of So. Cal. There are two clinical offices one in Torrance and another in Santa Monica that I can use. Address and directions will be provided at time of appointment.
PARENT OR GUARDIAN MUST BE PRESENT WITH CHILD, and bring identification.
IF YOU CHILD IS ALLERGIC to TAPES or LATEX, please let me know prior to the appointment.
Starting on May 1, 2003, there will be a individual phlebotomy fee of $15.00. For groups larger than 4, the individual price will be $10.00
CONTACT Kris Davis at (909) 454-5747 or by email at Krisyd@juno.com for any questions or to schedule an appointment.
.
REMINDER** Please read all directions for lab collection kits prior to collecting and transporting specimens. All information must be completed
on the lab sheets prior to lab collection.
---------------------------------------------------------------------------------------------------------------------
DISCOUNTED SUPPLIES FOR SALE AT NEXT TACA MEETING:
We get a lot of requests for supplies and products to be sold at TACA meetings. Here is a list of items for sale at the TACA Costa Mesa April 12th meeting for your review:
- ANDI BARS: (in four flavors) ANDI Bars are Gluten, casein, soy, corn, egg and nut free (excluding one variety.) $2.00 each or $27.00 for a case of 15.
- Autism Awareness Metal Pins: The classic autism awareness puzzle piece pin in durable metal. These pins are very hard to find. Cost per pin $3.00
- Cure Autism Now: Discounted Baseball hats, t-shirts, coffee mugs
- Great Moms on A Mission Wear: T-shirts, canvas bags and Autism awareness pins
Note: All pricing is available via cash only. I am sorry, we cannot ship to you. These are only available via the TACA Costa Mesa Meetings.
__________________________________________________________________
Hugs, thanks and be safe -
Lisa A Jeff's mom
Web Page for the TACA GROUP: www.talkaboutcuringautism.org - check it out
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
TACA does not engage in lobbying or other political activities.
P.S. TACA e-news is now at 598 families