Sunday, December 29, 2013
Wednesday, December 25, 2013
Wednesday, December 18, 2013
A Letter from Casey
Today's post comes from Casey Deakins, who happens to have a BIRTHDAY today. Happy Birthday, Casey, and thank you for your encouraging words.
Dear Parents just starting on this crazy journey in the Cranio world,
My name is Casey, I am 27 years old with Apert Syndrome, and at the age of 13 I was also diagnosed with Asperger’s Syndrome, an Autism Spectrum Disorder. I’m writing you this letter in the hopes that it can bring you comfort and advice for the following years of your journey. To start, it does get better. While it may seem like the bumps are never-ending, it does get easier. But if I could offer a crucial piece of advice, it would be to never let your child give up. The “I can’t” and “I will never” can be turned into “I can do this!!!” It may take a little more elbow grease but it CAN be done, dreams CAN be reached. I am 15 months or so away from graduating with my Bachelor of Science degree in Public Administration, and while due to unforeseen circumstances, the journey has taken 10 years to complete, I kept pursuing my dream. I will admit that I still have days where I start breaking down and feeling like I can’t accomplish what I've set out to do, but then my awesome family are there to go “Casey…..what are you doing??? You can so do this!!!!!”
As Nelson Mandela spoke so eloquently, “I learned that Courage was not the absence of fear but rather the strength to overcome it. The brave man is he who does not feel afraid, but he who overcomes it.” And as an old college professor once told me “Anything you have to work hard for, is worth it in the end.” Coming from someone who has had many doors slammed in my face for one reason or another in the past 27 years of my life…the rewards are made that much sweeter with each door that closes.
Happy Holidays,
Casey
Friday, December 13, 2013
iGive.com Gift Guide: For Teens
It's easy to sign up and start contributing to CCA using iGive.com. This year, our Gift Guides feature items with a great donation rate to CCA and some other cool goodies. Learn more about iGive.com here and happy shopping!
- WANT: "Drink in your favorite tunes with this innovative sports bottle design. Perfect for the gym, beach, or travel, a slot for your iPhone 4 or 5 amplifies songs through the bottom of the bottle as you sip your sports drink or hydrate after a long, musical run." This bottle makes a great gift for your active teen! [4% donation to CCA]
- NEED: "Cozy up and 'Deer to be Different' (or 'Hare to Be Different') with these wintry woodland accessories, showcasing a red deer bucking the trend and standing out against a crowd of uniform gray pals. Made of recycled cotton and acrylic yarn in a third-generation, family-owned facility in Binghamton, NY," these charming designs are a perfect, needed staple to any winter wardrobe. [4% donation to CCA]
- WEAR: This awesome tank boasts one of my favorite sayings, "Weird is just a side effect of awesome!" I love wearing t-shirts with a message. It's a great way to start a conversation on a positive note nonverbally.
- READ: Writing and reflection are very important ways for teens to channel emotions and work through difficult issues. Reading these prompts helps budding writers hone their skills at personal reflection, self-improvement, and writing. "This handy workbook will give anyone plenty of fun, low-pressure opportunities to get the imagination flowing. Collected from the minds and notebooks of the San Francisco Writers' Grotto, the book's prompts range from personal reflection, to silly lyric writing, to character development, and everything in between and beyond. Take them seriously or just have fun. Grab a pen, open this book to any page, and find the writer inside you." [4% donation to CCA]
Monday, December 9, 2013
Media Monday: Difference and Fashion
Pro Infirmis: Because who is perfect? Get closer. |
It's no secret that I love fashion blogs, so when I came across this Pro Infirimis project, I couldn't get it off of my mind and I had to share it with you! I am thrilled at the prospect of seeing non-traditional models in fashion because as I've said elsewhere on the blog, "I like different." Different is beautiful and this project celebrates differences. Projects like this one remind me that we are changing the world and how the world sees disability and difference.
Check it out:
From the Huffington Post article:
Pro Infirmis, an organization for the disabled, created a series of mannequins based on real people with physical disabilities, working with individuals like Jasmine Rechsteiner, a Miss Handicap winner who has spine malformations, and Erwin Aljukić, an actor with brittle bone disease. The project's title? "Because Who Is Perfect? Get Closer."
The beautiful process was documented in a video (watch it above), capturing the joy of the models seeing their own unique figures recreated for the first time. But the best part of it all is that the mannequins were actually placed in store windows today, filling the shopfronts on Zurich's main downtown street, Bahnhofstrasse, in honor of International Day of Persons with Disabilities today.
"Seeing it there for real is quite a shock," said one of the video participants. And that's exactly the point. Raising awareness of those with disabilities, specifically in the realm of fashion, is a conversation that's already begun with groups such as Models of Diversity, which aims to bring models of all shapes, sizes and colors to the fashion runways and media.
Outspoken individuals like Kelly Knox, the winner of BBC's "Britain's Missing Top Model," and Angela Rockwood, who returned to her modeling career with a Nordstrom campaign after becoming a C4-5 quadriplegic, have also made their voices known.
Some stores have made concerted efforts to include body diversity, including those with disabilities, in their ads. Nordstrom has been doing so since 1991, while British department store Debenhams made headlines earlier this year with a Spring 2013 look book that featured a woman who was an amputee.
It's still an uphill battle to make the mannequins in our store windows reflect the shoppers passing by. But "Because Who Is Perfect? Get Closer" and the Swiss stores who participated prove that it can definitely be done.
-----Erica
Sunday, December 8, 2013
Saturday, December 7, 2013
iGive.com Gift Guide: For Her
It's easy to sign up and start contributing to CCA using iGive.com. This year, our Gift Guides feature items with a great donation rate to CCA and some other cool goodies. Learn more about iGive.com here and happy shopping!
- WANT: This Kate Spade wallet is pretty and polished. It's also a little touch of luxury for her. [2% donation to CCA]
- NEED: Winter weather is rough on the feet, so this Bliss Foot Patrol kit will moisturize and rejuvenate tired tootsies. Bonus! The best time to treat your feet? While watching holiday movies on the couch with hot chocolate, of course! [4.4% donation to CCA]
- WEAR: This beautiful Millifiori necklace is a wonderful gift for someone special and a lovely way to support CCA. Supplies are limited, so order one before they're gone!
- READ: "You’ve never read a book like The Reason I Jump. Written by
Naoki Higashida, a very smart, very self-aware, and very charming
thirteen-year-old boy with autism, it is a one-of-a-kind memoir that
demonstrates how an autistic mind thinks, feels, perceives, and responds in
ways few of us can imagine. Parents and family members who never thought they
could get inside the head of their autistic loved one at last have a way to
break through to the curious, subtle, and complex life within." [3.2% donation to CCA]
Monday, December 2, 2013
Media Monday: Sarah Atwell's Message
Gotta love her t-shirt: "Just Ask!" |
Today's Media Monday post is a viral video that 17-year-old Sarah Atwell published online to share her story. Sarah has NF and reports being bullied since 5th grade. While her story is heart wrenching, it is also inspirational. Today, we celebrate Sarah's voice, her courage, and her strength.
A Discovery Fit & Health special will air about Sarah's journey on December 18, 2013 at 10pm (EST). As some CCA families have also experienced, agreeing to film a show doesn't mean you'll get to choose the title. Unfortunately for Sarah, "Girl with Half a Face," is not the title she would have chosen, but I think we can all agree that Sarah has a beautiful, full face! At CCA, we know there is no definition or standard of beauty. As for me, "I like different." I like different faces, I love furniture that others would discard as "scratch & dent" because it has richness and character, and confidence creates its own attraction. I think many of us in the cranio world agree, facial differences are beautiful, intriguing, and inviting. As we form a critical mass of folks who like different, we are the change in the world we wish to see.
A Discovery Fit & Health special will air about Sarah's journey on December 18, 2013 at 10pm (EST). As some CCA families have also experienced, agreeing to film a show doesn't mean you'll get to choose the title. Unfortunately for Sarah, "Girl with Half a Face," is not the title she would have chosen, but I think we can all agree that Sarah has a beautiful, full face! At CCA, we know there is no definition or standard of beauty. As for me, "I like different." I like different faces, I love furniture that others would discard as "scratch & dent" because it has richness and character, and confidence creates its own attraction. I think many of us in the cranio world agree, facial differences are beautiful, intriguing, and inviting. As we form a critical mass of folks who like different, we are the change in the world we wish to see.
For more info on Sarah's story, check out this link: The Chronicle Herald
--Erica
Sunday, December 1, 2013
Grateful Sunday: iGive Shoppers
Just in time for CyberMonday, we want to remind you about iGive.com - an awesome way to share a percentage of your purchase with CCA when you shop online. We're so grateful for everyone who shops with iGive.com and selects CCA as their designated charity, because every donation adds up! In 2013, I've earned $18.73 for CCA ... and I know you guys shop, too!
It's easy to sign up and start contributing to CCA. This year, our Gift Guides will feature items with a great donation rate to CCA and some other cool goodies. Learn more about iGive.com here and happy shopping! --Erica
- WANT: I love this office-friendly print! Hang it over his desk as a reminder to each other and visitors that kind words are spoken here.
- NEED: Kiehl's products are perfect for him. This no-fuss moisturizer with SPF should be a staple in his medicine cabinet. [3.2% donation rate at iGive.com]
- WEAR: Lentil-gear helps support Lentil's Ambassadog awareness activities and is lots of fun. Hook him up with this classic tee with a cute twist!
- READ: Tom Rath is a NYT Bestselling author with a rare genetic condition that makes his health uncertain at best. His books on leadership and well-being are critically acclaimed. In his latest book, Eat Move Sleep, he reports on his research of the importance and interconnectedness of eating, moving, and sleeping. [2% donation rate via iGive.com]
Thursday, November 28, 2013
Happy Thanksgiving
To all of our CCA Family, our "kids," our families, our volunteers, our donors, our medical teams, our nurses, our parents and our friends ... We are grateful for your support.
Monday, November 25, 2013
Media Monday: Remembering John Moulton
Sadly, one of CCA's beloved family members recently passed away. On today's Media Monday, we would like to honor John E. Moulton and the life he lived. John's music and inspirational life will forever leave an imprint on the hearts of CCA families that knew him. Our deepest sympathy remains with John's family.
I will always remember this touching moment at the 2013 CCA Family Retreat
and John's strength and courage leave a legacy for our community.
With Sympathy We Remember.
Sunday, November 24, 2013
Thursday, November 21, 2013
The "Ugliest" Word & Social Media
Ahhh…Facebook. How I love to hate you.
Now, first a bit of full disclosure: I am an
avid user of social media and some might say an almost pathological FB Poster.
I imagine many have “unfriended” me given my prolific and at times picayune
status updates. But, as the father of a child with craniofacial differences,
the unfortunate posting below led me to the realization that social media will
only add to the enormity of the challenges our “special” kids face.
Think before you post. |
The oddity of this whole thing is that Nathaniel,
our son with TCS, never even saw this ridiculous cartoon. But his Grandfather
did. A description would help: My dad is and will forever be a “MAN’S MAN” at
6’ 4” and well over 200 lbs. Bearded. Even at age 69 his hands remain callused
from 30 years of hardcore construction work. His body is somewhat ravaged by a
life spent working to provide for his family. And I mean real work…not the
stuff I’m blessed to do because he afforded me a better life. Paradoxically, this
Man’s Man carries around a Chihuahua name Daisy. But more importantly, his love
for his grandson Nathaniel knows no
bounds. He’ll never show it, but I know at times this love brings him to his
knees, like when he can’t take away the pain and struggle that facial differences
cause his Grandson. He knows he can’t make the surgeries go away. He knows that
some people will hurt Nathaniel despite our best intentions and this knowledge must
cut him to the core.
"UGLY!"
So for a second—just one second—try to imagine
his pain when one of his “friends”
posted the above cartoon. Imagine his pain when others “liked” it.
Ever since the day Nathaniel was born that
word sends a fire raging through me. And to think it now causes my father and the
rest of my family such pain, I’m left wondering: How do I—do we—react? Should I
fire back on Facebook with some missive on the pain that word causes? I wonder
are they even talking about kids like ours or even considering them?
And it’s not just kids like ours; it affects
others outside our community. What about the Mom or Dad whose unaffected child
just isn’t handsome or pretty enough as deemed by society? Is this post about
their kid? What about the kids struggling with adolescence and concerns about
their image? Is the post about them? In some way our craniofacial kids can handle
this stuff better than most, but what impact does this word UGLY have more broadly? I can’t even
begin to imagine. Did the creator of this meme even for a second, one single second, consider the pain he
or she was causing?
This social media situation is all made more
ironic by Nathaniel’s appearance on the NatGeo program Taboo. Now made even more prescient given the producers chose to
title the episode "UGLY." The point of that show, and I suppose my current
rambling, is the ongoing sentiment that anything different is UGLY.
Dictionary.com currently has the following
definition of the word UGLY:
· very unattractive or
unpleasant to look at; offensive to the sense of beauty; displeasing in
appearance.
But I would like to propose a new definition
of the word UGLY:
· the complete inability
to see the beauty in everyone and everything;
· an insensitivity to
anything different or outside the norms of the conventional;
· to act in a way that
shows complete indifference to the feelings of others.
The power of social media is enormous and at
times its power has wonderful results. One only need witness the “CHOOSE KIND” movement and the impact R.J.Palacio and the book Wonder has had
around the country. But, with great power comes great responsibility.
Unfortunately, we see far too many instances of social media’s power causing great
pain and sorrow. So, as the father of an amazingly beautiful boy I hope and
pray that we have the bravery and fortitude to respond to “UGLY” when we see
it.
Collectively let’s make a promise to one
another…
LET'S PROMISE...
As we continue to “CHOOSE KIND” we will remind the world the pain their definition of UGLY causes.
And as we approach Thanksgiving, let’s be ever
more thankful we know the true meaning of the word.
--Russel
Today's post is from Russel, a CCA Dad from Matthews, NC. Russel and his wife Magda have two sons, Nathaniel and Jacob.
Monday, November 11, 2013
Media Monday: The Ewing Family
This Media Monday post comes from Goshen, Indiana. The Ewing family had a wonderful story published in their local news outlet, the Goshen News, spreading awareness and acceptance during Craniofacial Acceptance Month. Thank you Ewings! Your beautiful story encourages many who find strength and refuge in their strong faith.
From the article:
It’s a different journey than that taken by other parents they know, as the Ewings’ days are consumed with doctor’s appointments, testing, dealing with social service agencies and trips to Riley Hospital for Children. All this provides a lesson in patience and humility, the couple said.
“We may do different things on weekends but the goal is the same — to have a closer family,” Ben said.
During this Craniofacial Acceptance Month and beyond, the couple most wants others to realize “the simplest thing — to look beyond our physical differences and look at the heart of a person. Every soul is unique with gifts and talents,” Ben said.
“Don’t be afraid or uncomfortable with someone who’s different. Make eye contact,” Jeannie urged. “Stop and see the person — the human within.”
- See more at: Goshen News Online
Ben, Jeannie, Felicity, and Sarah Ewing |
From the article:
It’s a different journey than that taken by other parents they know, as the Ewings’ days are consumed with doctor’s appointments, testing, dealing with social service agencies and trips to Riley Hospital for Children. All this provides a lesson in patience and humility, the couple said.
“We may do different things on weekends but the goal is the same — to have a closer family,” Ben said.
During this Craniofacial Acceptance Month and beyond, the couple most wants others to realize “the simplest thing — to look beyond our physical differences and look at the heart of a person. Every soul is unique with gifts and talents,” Ben said.
“Don’t be afraid or uncomfortable with someone who’s different. Make eye contact,” Jeannie urged. “Stop and see the person — the human within.”
- See more at: Goshen News Online
Welcome to the CCA Family, Sarah! |
Sunday, November 10, 2013
Friday, November 8, 2013
Friday Remix: The Face to Face Project
The Face to Face Project from Carl Weiss on Vimeo.
Face to Face is the first program of its kind in the United States. Studio Incamminati artists, in partnership with the Craniofacial Program at The Children’s Hospital of Philadelphia painted intimate portraits of four patients with craniofacial conditions to help them see themselves in a different light. The portraits, which premiered November 1, 2013 at The Children’s Hospital of Philadelphia, will be permanently displayed at the hospital.The location videography was produced and edited by Carl Weiss of Weiss Communications. With the exception of a small set of stock video clips (eye opening, NYC street scenes, couples looking at a smart phone and in a restaurant, etc.) all content was captured on SONY NEX-VG20 cameras with Rokinon SONY E-mount cine lenses and was edited in Final Cut Pro X.
Wednesday, November 6, 2013
Showcase: Jaci Samhammer
Jaci wearing bright green with Jill, Char, and Annie - our CCA Staff! |
My Name is Jaclynn Samhammer.
I Have Apert Syndrome and I am 27 years old. I love to dance and hang out with friends. I am one busy girl!
I work, I go dancing, and I am involved with the American Legion and The Elks Club.
Yes, I had a lot of struggles in my life: going through 30 operations, dealing with teasing being accepted in life, but when I started going dancing at the Legion and the Elks, I felt happy and safe there. Everyone is really nice and they accept me for who I am -- the way it should be! I love how my life is right now, but I do wish I could earn enough money to live on my own. Other than that life is good -- so just keep smiling and live life to the fullest!
-- Jaci
Tuesday, November 5, 2013
Educational Advocacy: Part Five
CCAKidsBlog.org is pleased to announce that Paula Guzzo, CCA Board Member and Past Chair, is writing a series dealing with Educational Advocacy. This is the final post in the series. Please also check out Part One, Part Two, Part Three, and Part Four.
Record
Keeping During the School Years
Maintaining
good records in your home file is a time saver that enables you to be a more
efficient, organized advocate on behalf of your child. You should keep your own
copy of all IEPs, psychological reports, test scores, correspondence with
school personnel, report cards, schoolwork examples, lab results, list of
medications, etc.
Record
maintenance during the school years can be cumbersome. Initially, I thought that
I needed one binder for Scott’s homework, one for IEPs, another for
communication, another for evaluation reports, one for medical reports, etc. You should have seen me in case conference
committee meetings taking up all of the table space with so many binders spread
out in front of me. Trying to find what I needed wasn’t efficient as I sometimes
tried to access three or four binders at one time!
Thanks to
the InSource (www.insource.org) recommendation of keeping
everything in the same binder, my record keeping became greatly streamlined. Thinking
it through, one binder makes sense. You
generally know the time frame when things/events occur. When you need something, you can thumb
through the binder around that particular time and readily find what you’re
looking for.
It’s easy to
get started being organized. Buy:
1.
Sturdy large
binder (3” is manageable)
2.
Sturdy
3-hole punch
3.
Page
protectors
Put everything in that sturdy binder, with the most recent on top. If
there are reports or schoolwork that you don’t want to 3-hole punch, slip them
into a page protector before putting them in the binder.
Use a pencil
to lightly write the date on the lower right corner of everything that goes in
the binder so it’ll be easy for you to find dates when you start looking for
something.
When you
need to take your records to case conference committee meetings or to doctor
visits, everything is contained in the binder that is ready to grab and go.
Binders are convenient to store on a shelf or in a file drawer.
WARNING
resulting from personal experience: If you have a young child, do not think you can keep track of
everything without some type of a record keeping system--years roll by and the
papers pile high!
Record
Keeping During Life After School (Adult Life)
As you
prepare for your child to transition from school to adult life, it will
simplify your and his/her life if you continue to keep records together in a
binder. As your child applies for housing, college, scholarships, medical
services, Medicaid, insurance, Social Security benefits, etc., you will have easy
access to important records. When I worked as the Transition Coordinator for
the Sycamore Services Transition Initiative, we provided the following list to
families. You, undoubtedly, will have some of your own to add.
Legal Records
·
Social
Security card
·
Social
Security number of both parents
·
Birth
Certificate
·
Guardianship
Orders/Power of Attorney
·
Copy of a
Will
·
Selective
Service Registration Card
·
State
Identification Card
·
Driver’s
License
·
Marriage
Certificate for parents (if step-parents involved)
·
Passport
Financial Records
·
Bank
Accounts
·
Insurance
policies
·
Information
regarding aall other resources
·
Pay slips,
tax returns, information regarding student income
·
Parent
income tax return statements
·
Information
about parent’s income/resources
·
Motor
vehicle registration
·
Current
Social Security award letter
·
Residential
facility admissions documents
Medical Records
·
Medical/Clinical
Information
·
Names and
addresses of current doctor(s)
·
List of
current medications
·
Names and
addresses of social service agencies providing supports
·
Health
Insurance policy numbers/cards
·
Name/phone
number of emergency contact person(s)
·
List of
previous surgeries with type, date, doctor, facility
Educational Records
·
Copies of
progress reports
·
Report
Cards/Transcripts of grades
·
IEPs and for
each school year
·
Copies of
evaluations such as speech, psychological, physical and occupational therapies
·
Copies of
all release forms including community based and work training permission forms
·
Transfer of
information to adult agency forms
·
Resume
listing addresses, phone numbers, work experiences, job responsibilities, dates
worked, accomplishments and references
A final
thought: If you are computer-savvy, your ‘binder’ can be on your computer in appropriately
named folders, preferably in a master folder that has links to each file (use
Windows shortcuts or Mac aliases). For
example, you might have folders named “IEPs” or “Parent Reports”, etc. with the
file names indicating the child and date (e.g., Scott’s IEP 2013). Unless the
document owners will email you a copy (as a Word doc or pdf), this will likely
require that some documents be scanned and saved as pdf’s or images. By using
your computer, you may be able to find things even faster without having tons
of paper to sift through.
--Paula
If you enjoyed this series, please let us know in the comments! We love feedback!
Monday, November 4, 2013
Sunday, November 3, 2013
Grateful Sunday: VUCA
VUCA is an idea straight from one of my business classes that I like to remember when practicing gratitude.
VUCA stands for a situation that is volatile, uncertain, complex, and ambiguous. In a recent lecture, I heard this term and the key message was "in VUCA you can find opportunity." If you find yourself in a VUCA situation, remember this is the area of opportunity. Be flexible and be open to change and look for the opportunity within the uncomfortable situation.
VUCA stands for a situation that is volatile, uncertain, complex, and ambiguous. In a recent lecture, I heard this term and the key message was "in VUCA you can find opportunity." If you find yourself in a VUCA situation, remember this is the area of opportunity. Be flexible and be open to change and look for the opportunity within the uncomfortable situation.
I got this awesome picture sent right to my inbox from PhotoYOLO. It's like my ZENbox. |
Friday, November 1, 2013
Friday Remix: Cameron Richard Opens for The Ready Set
Today's Friday Remix is an exciting story about Cameron Richard, a 13 year old born with a cleft palate. Cameron's story is inspiring and the coolest thing? He's going to open for The Ready Set tomorrow in New Orleans. Good luck Cameron! We are cheering for you!
Tuesday, October 29, 2013
Educational Advocacy Series: Part Four
CCAKidsBlog.org is pleased to announce that Paula Guzzo, CCA Board Member and Past Chair, is writing a series in October dealing with Educational Advocacy. This post is Part Four in our October Series. Please also check out Part One, Part Two, and Part Three.
Paula, Bob, Aaron and Scott on a Celebration Cruise for Scott's Graduation |
THE ALL-IMPORTANT PARENT REPORT
While working numerous years as an InSource
Regional Program Specialist, Sycamore Services Transition Coordinator, and
Evansville Vanderburgh School Corporation (EVSC) Special Education Department
Coordinator of Parent Supports, and later--EVSC Family Engagement Coordinator
at the alternative school, my focus was on helping parents to become A) informed
and B) equal participants in their child’s educational process. A previous entry discussed informed. This one
focuses on equal. One of the best recommendations I ever received or gave was
to write and present a Parent Report. This suggestion came in 1994 from fellow
a Hoosier advocate, Pat Howey (www.pathowey.com), as Bob and I were preparing for our son,
Scott, to be have his placement changed from
a segregated classroom for students with multiple disabilities to a general education setting at our
neighborhood school. After Pat noted that everyone except the parent typically presents a report at case conferences,
we were convinced to prepare our own Parent Report.
With Pat’s guidance and the help of a dear
friend who was also writing parent reports for her children, Bob and I wrote
our first Parent Report for that very important case conference which included
19 people and lasted 11 hours over 2 days. We continued to prepare and present
a Parent Report at all of Scott’s conferences. At my encouragement, numerous
parents have prepared a Parent Report for their own child. The time needed to
prepare the first report can seem daunting. Future years’ Parent Reports will
be much easier as the initial report can simply be updated. The report will
serve as a history of your child’s progress. The presentation of a Parent
Report will also aid in developing clear, measurable, and observable
Individualized Educational Plan (IEP) Goals and objectives based on your
child’s strengths and challenges.
Scott Performing in Godspell in 2002 |
Parent Report
Why? How do you prepare? What is included?
Parents are important:
- Parents are generally the only
permanency throughout a child’s entire life
- Schools only provide services until a
student is 22
School Personnel Should Value a
Parent Report:
- Parents provide a wealth of information
- Parents know more about their child than
anyone else
- Parents know the child’s abilities in a
variety of settings, not just school
- Parents were the child’s first teacher
- Parents are more efficient in
conferences if a report is prepared
- Parents and school can better focus on
the child’s needs
- Parents take an active role in their
child’s education
What is a Parent Report?
- It expresses the parents’ knowledge,
understanding, concerns, hopes, dreams, and intents for the child’s future
- It is direct and to the point
- It gives school personnel a document
with information they would not easily have otherwise
- It is always written. Then, you should verbally present it at the
case conference committee meeting along with school personnel who present
their reports. Written copies should be handed out and included in the
committee report. NOTE: It can be productive to provide the report to the
conference coordinator for distribution in advance of the conference.
Prepare for the Parent Report
(NOTE: This section relies heavily on good record keeping—the topic of my next
blog entry)
- Gather notes from previous meetings
- Gather your child’s previous IEPs
- Gather reports from service providers
- Gather report cards, school reports,
evaluations & assessments, and test scores
- Gather medical information (diagnosis,
vision, hearing, speech, mobility, diet, therapies, genetic testing,
diseases, allergies, heat intolerance, personal care)
- Gather information about your child’s
activities other than school (Scouts, church, youth leagues, etc.)
- Think about your and your child’s hopes
and dreams for school and beyond
What are Your Child’s Present
Levels of Performance in Every Area of Their Life?
- Home
- Community
- Leisure and recreation
- Academics
- Daily living activities
- Verbal and written communication skills
- Fine and gross motor skills
- Social and emotional levels
What are Your Child’s Strengths?
- Academic
- Social/emotional
- Verbal and written communication
abilities
- Athletic abilities
- Likes/dislikes
- Personality
- Leisure/recreational
- Fine/gross motor skills
- Daily living skills
- Unique skills
What are Your Child’s Challenges?
- Academic
- Social/emotional
- Verbal and written communication
abilities
- Athletic abilities
- Likes/dislikes
- Personality
- Leisure/recreational
- Fine/gross motor skills
- Daily living skills
- Unique skills
What Supports Are Needed to Help
Your Child Overcome Challenges (to “level the playing field” for the
disability)? Including your thoughts about supports in your Parent Report will
let school personnel know of your expectations.
§Modifications/Adaptations
(adjustment to an assignment or a test that changes the standard
or what the test or assignment is supposed to measure)
Modifications/Adaptations examples:
§ Manipulatives
§
Alternatives
such as posters instead of written reports
§
Assignments
that are “chunked”
§
Assignments
that are shortened
§
Use of a
computer
§ Use of a calculator
§ Voice activated or touch software
§ Braille instruction
§ Enlarged type
§ Textbooks on tape
§ Adaptive or adapted physical education
§ Accommodations (allows a student to complete
the same assignment or test as other students, but with a change in the timing,
formatting, setting, scheduling, response and/or presentation without
significantly altering what the test or assignment measures)
Accommodations examples:
§ Written or oral instructions
§ Study sheets
§ Note taker or scribe
§ Text books that are highlighted
§ Textbooks on tape
§ Frequent breaks
§ Dictate answers
§ Extended time for assignments
§ Extended time for testing
§ Oral testing
§ No timed tests
- Assistive Technology
Assistive technology examples:
§ Writing instruments
§ Communication boards
§ Communication devices
§ Computers
§ Word processors
- Related Services
Related Services examples:
§ Therapies (OT, PT, Speech, Music, etc.)
§ Paraprofessional/Aide (part time or full
time)
§ Transportation (special equipment, ramps,
short route)
§ Transition services (vocational, aptitude,
and ability assessments)
§ Counseling (for the student, other students,
or parents)
§ Administration of medicines
There will be one final post in the series, so please check back next week.
--Paula
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