REACH
for a Difference
E-News
Autism Spectrum Consortium Project – Road Map to
Resources
June, 2012 Vol. 2, No. 6
Table of Contents
I. Calendar Events Pg. 1
II.
Introducing: New REACH Action
Board Members! Pg. 5
III.
Kim Wombles – Parent & Autism Blogs Directory / Professor of English
& Psychology Pg. 5
IV. Kari
Simpson – Parent & Teacher at Bassetti Elementary - Social Skills Training Pg. 6
V.
John Mark McDonald – Parent/ Advocate for Adults - Sensory Issues in
Autism Pg. 6
VI. Tamara Wood – Parent - I Have a Dream Pg. 9
VII.
Dorothy King – Grandparent/ Retired school teacher Pg. 10
VIII. REACH
partnership with Alliance for Women & Children - Shelby Weatherford Pg. 12
IX. Reasonableness – by strengthenedbygrace
Pg. 14
Pg.
1
Calendar Events
1. REACH
for a Difference monthly family support group meets
on the first Tuesday of every month in the United Way of Abilene facility
located at 240 Cypress Street, Abilene, Texas, at 6:00 P. M.
REACH is an organization
dedicated to hosting an ongoing forum (I call it “A Conversation”) to discuss
the issues confronting individuals and families on autism spectrum. We at REACH understand the difficulties and
frustration that arise when families are attempting to access and thoughtfully
participate in provider services for their family members. Our present goals are to document the desires,
wishes, and needs of families on the spectrum and with that information develop
a road map to those resources offering services. Where resources are lacking, we at REACH hope
to be a part of the process to help present institutions and agencies formulate
and implement useful services that address those needs.
REACH members are comprised
of parents, professionals, and interested community members. We are presently inviting parents of those on
the spectrum to begin having conversations with us so that we may document more
specifically the needs of families and bind ourselves together for support and
family development.
2. REHAB
(West Texas Rehabilitation Center) Family Support Group – Tuesday, June 19th. This group meets every 3rd Tuesday at 6:30 to
7:30 p.m. in the WTRC Boardroom, 4601 Hartford, Abilene, Texas. Parking provided
in back.
3. King
David’s Kids – This a parents support group that meets at Highland Church
of Christ the 1st and 3rd Tuesdays every month from 6:00 p.m. until 7:30
p.m. You may leave a message at 325 672
8837. This telephone in manned from 4:00
p. m. until 6:00 p.m. Tuesdays and Thursdays.
Please call for program details. It is our understanding that child
supervision is provided by competent individuals during the program. Furthermore,
it is our understanding that KDK does not meet again until ACU starts fall
semester.
Pg. 2
4. Parental
Support Group - The REACH for a Difference team wishes to invite family
members that have loved ones on the spectrum to have a conversation with us
concerning REACH instituting a weekly meeting to support and participate in
group therapy for the caretakers of individuals found on the spectrum. This would be a time to process the various
difficulties that arises in families while they are attempting to manage and
function in their everyday lives. In
doing so, it would be a time when others who have traveled similar roads could
share their solutions and/or the real possibility exists that a group working
together may have much success in the problem solving process. Of course arrangements would be made for the
care of such children that accompanies the parent(s). Several conversations are ongoing with the
Alliance for Women and Children to use their facilities and equipment for such
an activity. This program is in the
early planning stages, so come and be a part of our monthly meeting and weigh
in on this matter. Your experience and
involvement to this project is most important.
REACH for a Difference is intended to be a collaborative action group,
so your voice will become a difference that makes a difference. Shelby Weatherford,
LMFT, LPC, Chairman
5. The Legacy Complex – is a new all-inclusive therapy center in
Abilene, Texas specializing in equine-assisted therapy. Along with specialized
and licensed counselors, the special horses are empathetic to the people they
help in the individual healing process. Equine-assisted therapy is
multi-faceted in its reach and can be used on all-ages and disabilities, and
especially those with autism. Equine-therapy assists autistic patients in their
social skills, balance and control issues. Great success has been seen with
autistic children working with horses in therapy sessions, and we look forward
to partnering with REACH to assist autistic children in the Big Country. If you
would like to volunteer or learn more about our services, our next volunteer
training session is Saturday, June 2nd from 9 a.m.-Noon, with registration
beginning at 8:30 a.m. The Legacy Complex is located at 4301 North Danville
Drive across from KTXS News on HWY 83; for more information visit our website
www.legacycomplex.org or find us on Facebook as The Legacy Complex or twitter
@legacycomplex.
Pg. 3
6. The
Abilene free summer lunch service - for children under 18 will be provided
at the Alliance for Women & Children, 1350 North Tenth Street, starting
June 12, Monday through Friday from 11:30 to 12:30. The service is offered in
partnership with AISD.
For additional details call the Alliance at
325-677 -5321.
7. Tennis
for Autism – A program by Casey Chapa will begin with a free session on
July 30 from 5:30-6:15. A 6- week program will follow August 6th
5:50-6:00pm. The cost for the six week program will be $60 and if you cannot
pay, you can talk to me and I will work with you. However, if I'm losing money
by doing so, I won’t be able to continue so for very long, so I am just asking
for people to be honest about what they can and cannot afford so that this
program can grow. Email me at casey.uspta@gmail.com.
8. Workshop:
Risk and Resilience in Children and Adolescents - Friday June 1, 2012,
Hardin-Simmons University Abilene Hall Room 106, Presenter: Dr. Lori Copeland -
9:00-12:00.
We hear
the word “resilience” used more and more frequently to describe the process of
overcoming obstacles and experiencing positive outcomes in the face of
adversity. The morning workshop will
focus on what it means to have a “resilient mindset” and examine the childhood
risk and protective factors related to poverty, cultural issues, family functioning,
disorders, disabilities, and trauma And abuse.
A presentation of current research findings, theoretical frameworks, and
popular perspectives will be followed by a period of discussion and
application.
1:00-4:00. The afternoon workshop will focus on
programs and interventions for teaching and building resilience in children and
adolescents. Popular evidence-based
strategies will be presented and discussed.
Pg. 4
All participants will be given a CD with
materials developed by the presenter to be used in the school or private
counseling setting. The workshop information will be based on the following
resources: Handbook of Resilience in Children, Edited by Sam Goldstein &
Robert Brooks Adolescents Resilience Builder Program for Children and by Mary
Karapetian Alvord, Bonnie Zucker, & Judy Johnson Grados Resiliency in Action: Practical Ideas for
Overcoming Risks and Building Strengths in Youth ,Families, and Communities,
Edited by Nan Henderson. Participants are welcome to attend one or both
sessions:
Cost: There will be no cost to participants
for attendance, CEUs or materials.
CEUs: 6
hours total LPC and LMFT continuing education credit - 3 hours will be awarded
for each session.
Kim
Wombles – REACH was recently
introduced to Kim at the Walk Now for Autism Speaks and later through Melissa
Richardson at Region 14. We quickly learned after meeting with her that she
shared the same passion and community service driven values that we do and look
forward to sharing her ideas and her unique creativity and experience to help
guide REACH programs and develop future projects.
Kim
Wombles - I am an English and Psychology instructor
at Cisco College and mother to three children on the spectrum. I and my best
friend Kathleen started the Autism Blogs Directory two years ago. It has now
grown to over 1,000 blogs, websites and forums dealing with not just only
autism, but many other disabilities, as well. I have volunteered with Autism
Speaks for the last two local walks and organized a Beat the Back to School
Jitters event for local special needs families. I am excited at the prospect of
working with Reach for a Difference—I am strong believer in the concept of
thinking globally but acting locally, and have involved my students in several
local events including Dream Night at the Grace Museum, Region 14's Autism
conference, the Hope Fund at Hendrick, the American Cancer Society, and the
local food bank. In my spare time, I volunteer for Hopsice of the Big Country,
visiting patients, conducting bereavement assessments and following up with
families after they've lost their loved one. You can find my writings as
Science 2.0, Countering, and many other places.
Pg. 5
Kari Simpson – is a parent on the spectrum and teacher of
many on the spectrum who has shown tremendous courage by stepping out to be
heard and to hear the call of REACH for new programs that help families on the
spectrum. Read more in her article below to discover how one teacher is
developing a new program to implement into an after school activity to help
children struggling with social skills.
By Kari Simpson - I am a teacher at Bassetti Elementary
School and serve children with Autism Spectrum Disorder (ASD). In the past nine years of serving this
population, one predominant theme has rung clear. Our children crave socialization and usually
do not have appropriate skills to make those links with adults or peers. Our students may not have the theory of mind
that their one-way perceptions are not that of their communicative
partners. Lines between real and fantasy
such as “Spider-Man” and “Santa Claus” are gray. Many parents love to cling to
childhood; do not know at what age their child should know the truth, and may
unintentionally make matters worse by encouraging these themes to go on for
years. This situation makes our children
easy targets for criticism by adults and bullying by peers. Our spectrum population doesn’t understand
the common nuances of emotions and what is required of them in certain
situations. For example, “If my teacher
just finished correcting another student’s behavior, now is not the right time
to open dialog with her.” These elements
often cause “differences of opinions” which can result in tears and frustration
for both child and others. It has always
been a wish or goal of mine, that we give our population “tools” to know how to
address difficult situations such as these.
Our children are lonely in a room full of kids because they do not have
skills in maintaining proper communication.
Our community wants to help, but doesn’t recognize signs or how to reach
out to students with ASD. I would like
to see a social training group started at school for our students and their
peers. It could meet on a regular basis
with our neuro-typical population (students without needs). This process would build understanding of the
disability and gain broader acceptance.
Raising understanding builds allies in our community and schools for our
children/adults on the Spectrum. Join
our cause and ask how you can help!
John
Mark McDonald - Mark
McDonald is an advocate for people with autism who specializes in increasing
understanding between those on the spectrum and those who are not. He is both a
person with Asperger's type autism and the father of two children on the
spectrum. He is currently in the process of setting up a website to help those
on the spectrum as well as those affected by it. He is also trying to set up an
effective advocacy group for college students on the spectrum in the Abilene
Sensory
Issues in Autism - by John Mark McDonald
An important thing to remember for
people with autism of all ages is sensory stimulation issues. It is well known
in the autism community that people with autism can easily become over
stimulated by certain things. After that things get a bit fuzzy. I have heard
it said that autistic people can be over or under simulated by certain types of
stimuli.
Pg. 6
From my own experience, people with
autism tend to need a small amount of sensory stimulation of the right type
(sensory attraction) and shielding from stimulation of the wrong type (sensory
over-sensitivity) or overwhelming amounts of stimulation of any type. To make
things more confusing, what kind of sensory stimulation is bad and what is good
can be different for each autistic person.
Sensory overload can be especially
disabling for people with autism. The symptoms of sensory overload vary from
person to person. Some of the common effects range from confusion, anxiety, and
restlessness to more serious effects like panic attacks, physical pain,
physical illness, migraine headaches, paralysis, meltdowns, and breakdowns.
On the other hand, people with
autism are well known for "stimming." The most well-known forms of
this are repetitive motions or sounds that are used to reassure or entertain
themselves. Stimming probably has the worst reputation of all the autistic
behaviors because it sets autistic people apart as being "weird, abnormal,
or unnatural." This can lead to stimming issues to be treated all out of
proportion of their importance, or even worse being treated with fear and
revulsion. Yet for people with autism, sensory stimulation can be a need in
order for them to be able to function effectively. Therefore, the goal is not
to eliminate sensory stimulation behavior but to channel it into more
appropriate and productive activities.
Being able to balance sensory issues
is critical for any autistic person to be able to function in a "normal"
environment. In order to do this, you need to identify what the sensory
stimulation issues are. This is especially difficult on caregivers of nonverbal
autistics or autistic children that are too young to talk and analyze their own
situation. In this case the only way to figure this out is by observation. Let
me give some examples with each sense of both sensory overstimulation and
attraction and some possible tools that can be used in either case.
If an autistic person makes noise or
screams every time it gets quiet, it may be that they need sound stimulation.
Some low background music like classical or ambient could make a great deal of
difference. On the other hand, if they get upset every time there is a noise,
this could mean they are being overwhelmed by sound. A pair of headphones that
completely cover the ears could be an amazing help to them. I really want to
test the effectiveness of a pair of noise canceling headphones with access to
both music and a parabolic microphone for controlling audio stimulation.
If an autistic person likes to hide
in dark places, or seems reluctant to go out into the sunlight or other bright
places, or they shy away from flashing lights or bright colors they may have
light sensitivity. A pair of sunglasses, even indoors, can be a real help. If
they are drawn to the light and things that are brightly colored, they made
need more visual stimulation. Shimmering and iridescent or spinning things
could be very comforting to them. Personally, visual overstimulation is the
fastest way to give me a migraine headache.
If an autistic person is constantly
rubbing or scratching themselves they may need more tactile stimulation. Even
more disturbing signs of the need of tactile stimulation are so-called self
injurious behaviors like hitting themselves or head-banging. A skim brush such
as occupational therapist use could be very helpful. I used to love corduroy
pants, embroidered patches, or those old-fashioned 3-D books that had the
plastic ridges on them that I could run my fingers over. The idea here is
something that is tactilely interesting that they can handle in public and
still be considered appropriate. Any suggestions on this would be welcome.
Pg. 7
On the other hand, it is not
uncommon to be overwhelmed by things like clothing touching their skin. Warning
signs here are things like constantly taking off their clothes, wearing their
clothes inside out or rejecting rough blankets or towels. In this case removing
clothing tags and making sure the inside lining of the clothing is smooth and
not scratchy can be very important. Autistic people who are sensitive to touch
often say that light touches leaves an itching sensation that may last long
after the touch is over.
My son still likes to wear his clothing inside
out as often as he get away with it.
Another thing to watch out for here
is sensitive skin. If they are constantly scratching at her skin until it's red
and raw, they may be sensitive to things like the chemicals in fabric softeners
or the scents in laundry soaps. I have sensitive skin and it leaves me itching
nearly constantly and I have to be constantly aware of whether or not it's
appropriate to scratch in public.
Smell can also be the big sensory
trigger. If they are constantly burying their nose in things, they might be
smelling. In this case scented candles or Glade plugs might be useful.
Conversely, they may be overwhelmed by smell. If they avoid the kitchen or
rooms that have just been cleaned or any other strong smells, scents may be
overwhelming to them. In this case, Febreeze becomes your friend. Sensitivities
to smell can often result in an autistic person getting violently ill in the
presence of a noxious smell.
Beyond the five primary senses,
there are other senses that autistic people can be more sensitive to. The sense
of balance and motion is one I've seen many autistic people to be drawn to.
They tend to love to run, dance, or spin and never get tired of it. On the
other hand, people who are motion sensitive may get car sick easily and find
things like roller coasters at theme parks to be torturous. I remember that
when I was a small boy, I used to spend until I got so dizzy that I fell down,
over and over, and it never made me feel ill.
Another obscure sense is deep muscle
pressure. Those who are drawn to deep muscle pressure tend to love hugs and
massages in infinite amounts, while those who are sensitive to it can hardly
stand more than a light touch. This particular one can lead to a major
misunderstanding about an autistic person “rejecting affection,” when in
actuality they just can't stand the sensation of deep muscle pressure.
The sensations of heat and cold are
also senses. When I was young I could not get enough of warmth. I was forever
wearing coats on warm days, never wore shorts even 100º+ weather and could not
get enough of long hot showers. It drove my poor mother crazy. I haven't known
anyone who's drawn to the sensation of cold, but it should be fairly obvious to
spot. Just a couple of notes here, warmth and burning are completely different
sensations: I love the sensation of warmth but hated the burning sensation.
Also, just because you love warmth does not mean you'll be cold and vice versa.
There might be other senses that
autistic people are drawn to, but these are all I'm aware of. I would also like
to remind you that these are simply examples from my own personal experience,
or have seen or read about. There are plenty of other ways in which autistic
people show they are drawn to or overwhelmed by sensations. Besides this, they
can also be drawn to or overwhelmed by different commendations of sensations. I
mentioned that I was drawn to certain rough textures, but this was especially
true when I could use them to make a sound that I could hear and could also feel
the vibrations deep into my tissues. For someone trying to unravel this from
outside observation they can be very complex and confusing.
In any case, sensory issues tend to
be a big deal for people with autism throughout their lives. Understanding
sensory issues can be the key to understanding how to help an autistic person
to improve grow and thrive in their environment.
Pg. 8
Tamara
Wood – parent of child on the spectrum
and recently is the recipient through community participation and donations to
receive a companion service dog for their son, Alex. She has been very
instrumental in encouraging us at REACH to grow and develop new ideas, hopes
and dreams with her passion and excitement.
I
Have a Dream
By:
Tamara Wood
Being a parent is probably the most difficult
job in the world….and also the most rewarding. As a parent you always want to
do what’s best for your child and help them to succeed at whatever they do. For
some that means helping their children grow up become a doctor or helping their
daughter grow up and become a mom…for others that means helping your child
learn to talk, to laugh, to connect, or to just make it through the day.
God gave my husband and I two wonderful boys,
Alex (5 years old) and Hunter (18 months old), who are both the center of our
world. At 18 months old Alex was
diagnosed with autism. He is non-verbal, has sensory processing disorder, and
also pica, which is having an appetite for things that aren’t actually edible;
wood, dirt, soap, etc… We have had to be
Alex’s advocates and try to make sure that he gets everything that he
needs…speech therapy, occupational therapy, special diets and supplements,
daily life skills, social skills, safety precautions…on and on and on. And this
has definitely been a long and often frustrating road. Over the past five years
we have been thrown into a world that we never knew existed, without a road map
to show us the way…or even an Atlas! Of course, some things we learned very
quickly…put locks on all the cabinets, don’t leave anything sitting out that
you don’t want eaten, broken, thrown away, or that is dangerous in any way,
always lock the chain at the top of all doors, sleep is apparently not
absolutely necessary in children with autism, “alone time” only happens when
they are asleep (reference previous comment), everything is case specific, and
last, but certainly not least…finding child care is next to impossible.
After having been in the “autism world” for
these past five years I have begun to visualize the perfect place for those
with autism and their families. I have a dream that whenever a family is
“inducted” into our world that they will actually be given an Atlas to help
them navigate through the many dips in the road and show them where the rest
stops are along the way. I dream of a place for parents to go to for help and
support not just for their children, but also for themselves. A place for
children to go to where their “voice” is heard and where playtime is also
learning time!
In my dreams I see a place where when a child
walks in they see fun and possibilities; a room that I have dubbed a “Sensory
Room”. Where everything they see, touch, hear, smell, and even taste is fun and
full of education.
Pg. 9
There are slides, swings, zip lines, stairs,
balls, textured walls, doors to open and shut, lights to turn on and off, heavy
blankets to snuggle in, large bean bags to jump on, ball pits to swim through,
headphones to block out noise, glasses to block out light, vibrating chairs,
air machines, and music! And everything can be and is used to teach the
children and the parents! I dream that this place will be a school for children
with autism and similar developmental disabilities all year round. That there will
be professionals there who can observe a child and work closely with the
parents, teachers, and therapists to determine how that child learns best and
recreate the environment for them and help to implement this in the home as
well! Where there are people who can show you all of the resources available to
your child specifically.
And I also dream of this place having 24/7
child care for these children and their siblings. Where they are already loved
and where they are already comfortable. Of course, this part is mainly my dream
for the parents. Wouldn’t it be a dream come true to have a place where you can
take your children where you know they will be taken care of and you can have
some of that “alone time” that we so rarely get? Even if it’s just to get some
sleep! Being the parent of a child with autism is more than a full-time job
that at times can make us reach our limit and can also cause friction and
stress to our marriages, which is why I would love to see counseling for
parents and family members of children with autism. All of us at some time need
a shoulder to cry on and help to get back up and keep going.
In essence, my dream is a sanctuary for all of
those touched by autism. A place that relishes in what these wonderful kids and
even adults with autism have to teach us, a place where we strive to understand
and help to make learning easier for them…a place where our children can
succeed…in their own way and in their own time.
Dorothy King – REACH was introduced to Dorothy by her son and daughter-in-law at one
of the REACH meetings she attended. REACH was inspired by this grandparent that
was so supportive to a family on the spectrum. She like many others doesn’t
have all the answers but what she does offer is her time, willingness to teach
/ learn patience and understanding. You don’t need credentials to be a part of
the REACH team all you need is the desire to help others.
Dorothy King - When
asked to write a resume as one who works with autism, my first thought was,
"That will be short!" I have
no credentials and no special training.
What I do have is a grandson and friends with children on the
spectrum. Years ago someone said to me,
"If you don't know how to do something, just start." That works for me. I rarely feel fully equipped for anything I
do, but sometimes I see a need that is so great that I cannot turn away. No one ever plans or prepares for this
spectrum stuff. It just hits and knocks
us off our feet. After the shock and the
grief, comes the "What do I do now?"
This happened in our family with John David, our first grandchild. I remember well how my heart dropped to my
feet at the news of the diagnosis. But
then I saw the most amazing and inspiring thing happen as I watched how Rachel
and Jason dealt with this.
Pg. 10
They became passionate seekers in their search
for information and the best therapies for John David. They just did what they
knew at the time, and as they went, they learned more. One step at a time, taking advantage of
whatever resources they had at any given time, always totally committed to
doing what was in John David's best interest.
I don't think I have ever told them how much I admire them and what
great parents they are.
The summer John David was 6, the family moved
back to Abilene from Fort Worth and I was eager to be involved with John David
on a regular basis. Having retired from
teaching the first grade at Bassetti, I was involved in many things, but one of
them was tutoring little boy who has some special needs. It's funny how our
life experiences sometimes prepare us for what we are about to face--or perhaps
it's not funny at all, but part of a divine plan.
Now I
have become the seeker. I look for
opportunities to learn more or volunteer.
I want to learn all I can about autism and strategies that help. I want to try what I learn and see if he
responds. Sometimes things work, and
sometimes they don't--I learned that teaching.
My philosophy has always been to give it a good try and if it works do
it, and if it doesn't, try something else.
We have fun! Children learn best
when they are having fun, so whenever I can turn something into play, I do
it. But sometimes firm guidelines are needed
and then I can be very stubborn!
I am so blessed to be John David's
grandma. My desire is to be a positive
force in his life. Someone who helps him
develop into the person he was meant to be.
I want to laugh with him and have fun with him. Rachel and Jason are "in the
trenches". I am not. They are the ones that are on call 24/7. I am just the support, but I want to do a
really good job of that.
No, I don't have much of a resume. But I do have this----I'M AVAILABLE!
REACH
partnership with Alliance for Women & Children
We at REACH for a Difference began our journey into
the world of autism believing strongly in several ideas as founding
principles. Among those anchors were the
concepts of collaboration and coalition.
We believe that in the environment of today’s world we must find
fellowship and connection in the network of fellow practitioners of service of
those in need to address the many issues of families in our community. That is the reason that the sub name of REACH
is Autism Spectrum Consortium Project.
To meet the mission requirements of REACH we know that it will take many
individuals and numerous other organizations, each exercising their special
expertise in cooperation together to effectively provide a broad spectrum of
services to families in need.
Pg.
11
REACH staff members have been having a conversation
with the personnel over at the Alliance for Women and Children for several
months. Of interest to us is wonderful
opportunities to partnering with them, using their facilities and equipment, to
have a place where counseling and support services could be offered to family
member while their children were supervised with competent childcare
workers. AFWC have wonder gym and new
outside playground that would be ideal for teaching children on the spectrum
while their parents participated in their activities. Also, AFWC has just received two Imagination
Playgrounds in a Box which includes many different components much like a large
Tinker Toy set. This equipment is very useful in teaching collaborative play among
children. Individuals, including Reach
staff and Action Team member are in the process of being trained on the use of
such equipment so as to provide for our autism community play dates. Please see the ad in this e-letter concerning
this equipment.
Very specifically, we wish thank Toni Brown and
Susan Elgin, along with the staff, over at the Alliance for their pleasant and
helpful overtures to us as we have collaborate together to make such activities
possible to our children and families on the spectrum. The Alliance has much to offer to families on
the spectrum and we recommend that you contact the staff over there for a
complete list of activities and opportunities for growth.
Pg.
12
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