Fall 2014
Family Links
PRODUCED BY AND FOR PARENTS OF CHILDREN WITH DISABILITIES
Molly Loves
By Cyndy Knight
Inside this issue:
Molly Loves
1
Editorial
2
Featured Events
3
Summer Picnic &
4-H Horse Camp
4
Camp Primetime
5
Fall Calendar
6-7
Monthly
Emotional
Support
8
Confessions of a
Special Needs
Parent
9
A Letter to My
Teacher
10
Reading Study
11
Molly Loves
(continued)
11
A New Home for
Parent to Parent
12
October is both Disability Awareness Month, and Down Syndrome Awareness Month. Awareness is
a life or death reality for children with Down syndrome. Molly was born January 29, 2003. She’s one
of the lucky 15% of babies with Down syndrome to be allowed a live birth according to Global Down
Syndrome Foundation statistics. I wish I could go back to the mom of eleven years ago and paint the
beautiful picture that is Molly’s life and reject the dismal picture painted by our society.
In the hospital after Molly’s birth I was having a hard time with
the “what if’s.” One of the pediatric nurses in Spokane said
firmly, ”You don’t know what the future holds for ANY child.
Don’t put a box around Molly. Let her show you what she can
do.” Molly, like most kids with Ds had an accompanying health
problem, in Molly’s case, Herschprung’s disease (corrected with
colon surgery when Molly was three weeks old). Molly’s first
few weeks were a medical rollercoaster ride; it was a ride that
redirected my role as mother…to advocate.
Molly is now 11. She has been a source of entertainment that
only a Molly boogie, or off-tune karaoke of “Let It Go” can bring.
She has an adoring family. Her two sisters keep me in check especially if they feel I am spoiling Molly by telling me, “Molly can
pick up her stuff too!” Molly has an older sister Madelyn (14)
and a younger sister Chloe (9) who are the unsung heroes in
Molly’s life. One day after school last year, Chloe, in tears, said,
“Molly doesn’t hug me long enough at recess.” Molly will be in
fifth grade this year with Mr. Lux (aka Mr. Yucks, one of her favorite people). His daughter Whitney
was P2P Volunteer of the Year in 2013.
As parents, Lawson and I worry about inclusion, puberty, and the tricky balance of pushing too hard
or not enough. Molly is reading at a Kindergarten/First Grade level.
She loves her iPad and our dog Gus. She loves chickens and
elephants. She loves her friends and being the mother hen to
younger cousins. Can you catch the theme? Molly loves. I am only
aware of three things Molly does not love; hurrying, taking showers,
and spiders.
This summer our family visited Yellowstone National Park in
Wyoming. (Did you know that persons with disabilities can get an
Access Pass that allows free entrance for the family and 50% off on
campgrounds?) The whole car erupts in cheers for Molly every time
we enter a National Park for free. Molly loves the wildlife, hiking,
and camping. Molly has completed three Junior Ranger Programs, at Glacier, Crater Lake, and
Yellowstone. She has the badges to prove it.
Continued on page 11...
EDITORIAL
Dear P2P Friends & Families,
Fall is my favorite season. Gorgeous, colorful leaves
blanket the trees. The temperature plummets and I
pull out my cozy sweaters. Soups and hearty casseroles once again grace our dinner table. Fall is always a welcome change of pace for me.
Here at Parent to Parent we hope you enjoy fall as
much as I do and can join us for some of the great
events we have planned.
We will continue to have 4 monthly support meetings: Jumpin Jellybeanz
for the birth-12 families, Mamas Especiales for Spanish speaking moms,
Parent Connections (formerly known as Senior P2P Dinner) for parents
of teens or adults, and Dinner & Drinks for parents in all stages of life.
For extra fun in September, you can attend Movie Night and see the Lego
Movie or enroll your child in the new football/cheer camp offered by
Coach Spiess!
In October, we have a Fall Workshop with our favorite presenter, Sherry
Mashburn. She will teach you all about IEPs and inspire you to take action for your child. If you don’t have a school-age child, you are still welcome to come for lunch and the afternoon information sessions.
In November we have the opportunity to communicate our respite and
financial needs with our local government representatives at the annual
Legislative Tea. PLEASE plan on attending this event! More voices equal
more action when it comes to government and our families need more
support!
As fall arrives in coming months, I hope you enjoy the beauty of the
leaves, the coolness of the weather and the warm and friendly community we call Parent to Parent.
Happy fall,
Angela Beam
Do you have something to share with our P2P community?
Let us know and we can add it to an upcoming newsletter!
Parent to Parent Support Programs provide emotional support and information
to families of children with special needs or disabilities. We utilize trained
veteran parents, “Helping Parents”, who provide one-on-one support to new
or referred parents who have a child with similar needs. We support families
at all stages of life, and provide recreation, community events, and information
specifically for families of children with special needs or disabilities.
Page 3
PLEASE JOIN US FOR THE ANNUAL
Walla Walla Parent to Parent
FALL WORKSHOP
October 25, 2014
10am-3pm
1629 Evergreen St., Walla Walla
IEP Presentation by Sherry Mashburn
Sherry is a parent advocate from PAVE (Partnerships for Action, Voices for Empowerment). She is an expert on all things special education. She will teach you about the rights you and your child have in the IEP
process and inspire you to advocate for your child.
Luncheon and Mini Spa
Relax and visit while you enjoy a delicious meal. During our break you will have an opportunity to get a
mini massage, hand treatment and foot soak. At the end of the hour we will learn 3 great relaxation techniques to de-stress at home.
Information Fair
Buddy Program, Life Opportunities Trust, Guardianship, Potty Training, Puberty, Employment, Housing
and more! We will have information from a number of local agencies as well as parent experts to share
their knowledge and experience.
$15 Workshop fee includes morning coffee station, lunch and all materials
Kindly rsvp to Angela 509-876-1583 by Thursday, 10/23/14
October 31, 2014
5:30-7:30
@ the Field House
Come dressed in your costume!
Games and goodies for the whole family!
September 20, 2014
6:00-8:00
@ the Field House
Come enjoy a movie and popcorn with P2P!
Bring a comfy chair, beanbag, pillow or blanket.
Page 4
Family Links
Annual P2P Picnic 2014
We typically have our picnic at Fort Walla Walla, but this year we decided to go the Field House
to conquer the heat with air conditioning. It ended up being a good decision because August 13 had
thunderstorms, wind and rain! We were glad to have a place to stay dry while we enjoyed hotdogs
and many great potluck dishes together. When the clouds parted with sunshine we enjoyed a
beautiful rainbow and the children ran outside to play!
Thank you to all of the brave families who came. We had delicious food...and a fantastic time!
4-H Horse Camp
Fall 2014
Since 1986, thousands of families
have enjoyed the opportunity to
escape their daily stresses, taking
pleasure in the beauty of the outdoors, and participating in activities with other families sharing
similar challenges. Gratefully, our
P2P group was able to go in June
of this summer.
As you can see, Camp Primetime
was a fantastic opportunity with
boating, hiking, cabins and volunteers who prepare all of the meals
for the weekend.
If Camp Primetime is available to
us again next summer, we will
open enrollment in April or May.
Priority will be given to families
who have not yet attended.
THANK YOU CAMP PRIMETIME!
Page 5
Page 6
September
9
JUMPIN JELLYBEANZ
3:00-5:00
12
October
10
3:00-5:00
RSVP required
FREE
PARENTS NIGHT OUT
509-876-1583
5:45-8:15
MAMAS ESPECIALES
MAMAS ESPECIALES
10
12
LEGISLATIVE TEA
6:00-7:30
1629 Evergreen St., WW
14
PARENTS NIGHT OUT
6:00-8:00
1629 Evergreen St., WW
10
DINNER & DRINKS
6:00-8:00
5:45-8:15
6:00-8:00
Journey’s Restaurant
YMCA, WW
1629 Evergreen St., WW
119 E. Alder, WW
RSVP required
JUMPIN JELLYBEANZ
3:00-5:00
20 E. Poplar St., WW
FREE
509-876-1583
DINNER & DRINKS
6:00-8:00
119 E. Alder, WW
14
MOVIE NIGHT
6:00-8:00
25
1629 Evergreen St., WW
Lego Movie and popcorn
SENIOR DINNER
6:00-8:00
29
Smith’s Family Restaurant
FOOTBALL & CHEER
CAMP
FALL WORKSHOP
10:00-3:00
1629 Evergreen St., WW
RSVP required
509-876-1583
SENIOR DINNER
6:00-8:00
Smith’s Family Restaurant
1425 W. Pine, WW
27
JUMPIN JELLYBEANZ
FREE
Journey’s Restaurant
24
11
20 E. Poplar St., WW
509-876-1583
20
5:45-8:15
YMCA, WW
RSVP required
12
PARENTS NIGHT OUT
20 E. Poplar St., WW
YMCA, WW
12
November
31
Details to be announced...
5:30-7:30
1629 Evergreen St., WW
6:00-8:00
1629 Evergreen St., WW
DINNER & DRINKS
14
6:00-8:00
Journey’s Restaurant
119 E. Alder, WW
SENIOR DINNER
19
6:00-8:00
Smith’s Family Restaurant
1425 W. Pine, WW
P2P HALLOWEEN PARTY
MAMAS ESPECIALES
14
1425 W. Pine, WW
27
HAPPY THANKSGIVING!
Come in costume!
Blue Mt. Therapeutic Riding
In Step
Horse Riding for Individuals with Disabilities
Dance Class for Individuals with Disabilities
6 week fall session has begun
5:30-6:15 pm (T, Th) Beginning Ballet (age 7-17)
Choice of Tuesday or Wednesday evening lessons
6:30-7:15 pm (T, Th) Beginning Ballet (age 18+)
Ron & Mary Murphy, instructors
Rhonda Copeland, instructor
May register at any time.
May register at any time.
Call to register (509) 540-6244
Call to register (509) 525-2920
Page 7
September 2014
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Page 8
Monthly Emotional Support Opportunities
Now
FREE!
20 E. Poplar Street, Walla Walla
For families with children birth to 12 years old
with disabilities.
Every 2nd Tuesday of the month
September 9, October 14 & November 11
Journey’s Chow House
119 W. Alder Street, Walla Walla
from 3:00 to 5:00 PM
All Ages & Stages Caregiver Meeting
NOW FREE FOR P2P FAMILIES!!!
Jumpin’ Jellybeanz has 6 indoor bouncy castles and a
large foam-covered floor with cars and balls for the
littlest children. Siblings welcome.
Food and drinks available for purchase.
Volunteer Hostess - April Eilertson
Every 2nd Friday of the month
September 12, October 10 & November 7
From 6:00 to 8:00 PM
This is a casual chance to relax and gather with
other parents and caregivers. Come have dinner or
just a drink while we talk and support each other.
Call volunteer hostess Angie Witt for more
information 509-540-9880.
Mamas Especiales
Smith’s Family Restaurant
1425 W. Pine Street, Walla Walla
No Host Dinner for Parents and Caregivers
of teens and adults
Last Wednesday of the Month
September 24, October 29 & November 19
6:00—8:00 pm
This monthly dinner meeting is a gathering of parents and
caregivers in a casual atmosphere sharing concerns, success
and information about each of our own situations in the
hopes of learning and gathering support.
Volunteer Hostess - Carla Nibler
For all women who speak Spanish
Every second Friday of the month
September 12, October 10 & November 7
6:00-8:00 pm
POTLUCK
Diana Bergevin Field House
1629 Evergreen St., WW
RSVP at 509-301-0679
Hostess - Ysabel Fuentes
Page 9
Confessions of a Special Needs Parent:
The Back to School Terrifies Me
My youngest has Down syndrome
and she thrives on routine. We
had Kindergarten down! She was
in a co-taught classroom with the
regular kindergarten teacher and a
special ed teacher. It was great!
There was a bathroom attached to
her classroom. She adored her
teacher.
Things change in first grade,
and there is no co-taught
classroom. I also had to make
a choice between regular
curriculum or special curriculum for kids with cognitive
disabilities (as they call it).
It stinks.
My middle daughter has cerebral
palsy and a number of other
diagnoses. She had the same
teacher the last two years and
supports in place, but this mama’s
heart feels heavy.
And it is in situations like this that
I recognize how different life can
be from typical families. Although
I have similar fears with my oldest
(and typical child), it does not
compare to the fears I have for
my vulnerable kids. Not even
close!
“Excitement is muddled with fear
as a new school-year approaches.
I’m ready for some quiet around
the house but I have two kids with
special needs and the back to
school terrifies me.”
There is no bathroom attached
to her new classroom. She will
have a locker. She will have a new
teacher. She will have new classmates. For my child who strives on
routine and sameness, this is a lot
of new and I don’t like it one bit.
Nobody in her class knows her yet.
This is terrifying!
Worse, her speech makes it hard
for her to communicate what
happens in school. “How was your
day?” Is sadly not a conversation
I’ll have with my child, at least not
to the extent I wish we could.
What if someone is mean to her?
What if someone picks on her and
calls her names? What if they
make fun of her? It is terrifying!
she needed that consistency, yet
this time around we don’t even
know who her new teacher will
be. Not a great feeling for a child
with attachment issues, post
traumatic stress, and clinical
anxiety (yes, besides her depression and ADD).
She will have a new class. New
classmates. More kids that will
ask her, “Why do you walk like
that?” and, ” Why do you have
those things on your legs?” She
already hates the fact that she
has cerebral palsy.
I know we will take it one day at
a time. I know teachers and
therapists alike will care for my
kids. I know my girls go to a
great school and they have great
I pray often that my girls find
friends, that they feel loved
and accepted, and that they
navigate the new school year
with grace and self-assurance.
I’ll most likely be the mom
crying that first day of school.
And I really hope I don’t drive
their teachers crazy when I ask
them 100 questions on our openhouse day. “Who will be with
Nichole during recess?” “Who is
helping her when she has to go
to the bathroom?”
As much as I wish I could keep
them home with me, I know this
is good for them…and good for
me. Ultimately, I want my children
to become their own advocates. I
want them to stand up for themselves, I want them to learn to
use their voice. And these new
challenges, such as a new school
year, provide an opportunity for
growth for all of us. For me, to let
go. For them, to go on. Still, I’m
terrified!
By Ellen Stumbo
www.ellenstumbo.com
Page 10
A Letter To My Teacher - 15 Things About Me
Hi, my name is _________________________________ and I am in your class this year. I want you
to know a little about me. I’m nervous to be in your class because it’s new and I don’t know what to
expect. I may need some time to adjust before I feel comfortable. Please don’t judge me on my first
few weeks. As the time goes by, you will be amazed by the things I can do. As I become familiar with
your classroom I will begin to shine. A great way to speed up this process is letting me know what to
expect. Written or picture schedules for the day reduce my anxiety and confusion. A five minute warning before a change of activity can help me greatly too. You are my teacher and I look up to you. I
want to succeed this year but I can’t do it without your help and most importantly, your belief in me that
I can do it!
1. What is my general disposition?
2. What am I really, really good at?
3. What do I absolutely LOVE doing?
4. What do I absolutely HATE doing?
5. What are my strong areas?
6. What do I need extra help with?
7. Which skills would my parents really like me to work on this year?
8. How do you know when I’m getting frustrated?
9. What can you do to calm me down before the storm hits?
10. Too late! The storm hit! What can you do to help me?
11. What strategies work really well to get me to do something I don’t want to do?
12. What typically makes me laugh?
13. What consequences back-fire and don’t give the desired results?
14. Which consequences work best?
The new school year can cause a lot of emotional stress for families. Parents hope for a teacher who
recognizes the strengths and brings out the best in their child. The following letter can be a valuable
resource to help the teacher to understand your child better. Take a moment to answer the
following questions and schedule a meeting with your child’s teacher to share the information.
Page 11
Molly Loves
(continued from page 1)
In Walla Walla we have found lasting friends through Parent to Parent, a
community that shares and supports each other in the often turbulent seas
of disabilities. Even without paid services, we have benefited greatly from
the P2P Parent Workshops learning about PAVE, developing skills for
future employment, WA Endowed Trust, and so much more.
The last three summers Molly has enjoyed P2P Summer Camp (thank
you Blue Mountain Community Foundation!!) and her time at Camp
Meadowood Springs (Speech Camp) at Tollgate, OR (a forty-five minute
drive from Walla Walla). She comes back after a week at camp with
better articulation and stories than an entire year of speech therapy.
P2P basketball coach Patrick McFetridge and Challenger Baseball coach Mike Spiess have shown me how investments of
time can transform lives. We are so grateful for their volunteer service and kindness. Other early heroes in our world
include Karen Gaffney, self-advocate and athlete with Down syndrome, who recently received an honorary doctorate at
the University of Portland, Oregon. Speaking of heroes, we are very fortunate to live close to my parents who are a
huge support to our family.
I am passionate about bringing awareness to the abilities of our children. Molly has taught me to look outside the box, to
stretch in ways that aren’t always comfortable. She has taught me that ignorance is to be feared more than lack of intelligence. Funny, when I stopped putting Molly in a box, endless possibilities opened for both of us. Shouldn’t it really be
called developing abilities, not developmental disabilities!
-Written by Cyndy Knight
Study Finds Reading Possible Despite Low IQ
By Michelle Diament at DisabilityScoop.com
For students with intellectual disability, functional skills are often prioritized over academics, but a new study finds that
children with low IQ are capable of learning to read.
With persistence and specialized instruction, researchers found that kids with mild to moderate intellectual disability can
read at a first-grade level or better. They say the results could have life-changing implications for thousands of students
with low IQ.
“If these children, and any other struggling readers, can learn to read, that means they can go grocery shopping with a
shopping list, read the labels on boxes and cans and read basic instructions,” said Jill Allor of Southern Methodist University who led the study published in the Journal of Exceptional Children. “Even minimal reading skills can lead to a more
independent life and improved job opportunities.”
For the study, researchers followed a group of 141 kids with IQ scores ranging from 40 to 80, all of whom were able to
speak. Of those studied, 76 students received 40 to 50 minutes of intensive reading instruction daily in small groups with
no more than four students to each teacher. The remaining 65 students were provided standard lessons with varying levels
of reading instruction.
After four years, the students who received the specialized instruction performed significantly better on a variety of reading tests compared to those who participated in the traditional lessons, the study found.
What’s more, researchers said that IQ did not predict a child’s ability to read. While students with higher IQ scores generally improved more quickly, there were cases where children with lower IQ scores outperformed their peers with higher
scores.
“This study demonstrates the potential of students with intellectual disability or low IQ to achieve meaningful literacy
goals,” Allor said, adding that the findings prove “we should never give up on anyone.”
Beginning October 1st, 2014
Parent to Parent is joining the
To contact the P2P Coordinators:
Angela Beam (509) 876-1583
Ysabel Fuentes (509) 301-0679
New Mailing Address:
PO Box 113
College Place, WA 99324
Email addresses to be announced soon...
PARENT TO
PARENT
Sponsoring Agency:
Lillie Rice Center
2616 E. Isaacs Ave.
Walla Walla , WA 99362
www.lilliericecenter.org
(509) 525-5433
P2P Coordinator:
Angela Beam
[email protected]
(509) 876-1583
Hispanic Outreach
Coordinator:
Ysabel Fuentes
[email protected]
(509) 301-0679
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