Workshop Alert: Parent & Caregiving Coaching From Professionals Within Our CCA Family

 

CCA is proud that members of our community are educating other parents and caregivers! Check out these three events coming up soon presented by professionals that are members of the CCA Community.

(*Note these events are not hosted by CCA.)

Aug. 25: “Mindset Shift for Special Needs Parents – Learn how to overcome fear, worry, caregiver burnout and how to deal with uncertainty.”

Facilitated by Ludivine Tandazo, email questions to [email protected]

Free; Registration Required: registration link.

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Aug. 27: Wellness Workshop for Parents and Caregivers, facilitated by Vanessa Acero

$60; Registration Required: email [email protected]

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Ongoing Parent Support Group,  Second & Fourth Saturdays of each month, facilitate by Vanessa Acero

$35/session; Registration Required: email [email protected]

Calls, Cards and Care Packages Oh MY! Sign up Today!

Is your child having surgery? CCA wants to be there for you and your family.

You can sign up on this page for a "Get Well" card, a care package, or a call of support for you, your partner, or your child!

We will work to match your needs with our resources, to help you get through the experience feeling loved and supported. 

Psychological Benefits of Pets at Home

By Amy K. Williams

Amy Williams is a freelance journalist based in Southern California and mother of two. As a parent, she enjoys spreading the word on positive parenting techniques in the digital age and raising awareness on issues like cyberbullying and online safety.

It goes without saying that everyone wants to belong and to be accepted, but sometimes there are circumstances that prevent that from happening. This is sometimes the unfortunate experience of children with craniofacial conditions, facial differences that impact the face or head.

While all children are deserving of love and affection, people with facial differences are far too often on the receiving end of stares, insensitive comments, or even teasing and bullying. The problem is that bullying can, and often does, leave emotional scars that can lead to self-esteem issues, depression, or poor academic performance. One study, in fact, finds that between nine and 15% of kids are on the receiving end of chronic teasing as well as bullying that can cause harm.

Parental encouragement and greater education efforts to inform people about facial differences can play a role in protecting children with issues ranging from cleft lip and palate to Apert’s Syndrome. Additionally, there are other things that can be done to assist children who have these or other medical conditions.

For instance, pets provide proven psychological benefits for families and children. Cats, dogs, and other animals can help children facing issues like low self-esteem and resiliency. Read on to learn about some of the benefits of having pets in the home environment.

Stress Reduction

Owning pets can help to decrease levels of stress. For instance, rhythmic petting not only can benefit cats or dogs, but also can benefit the children who pet them. While a human pets an animal, the hormone oxytocin (sometimes called “the bonding hormone”) is released in the body. Oxytocin relieves anxiety, which helps to bring down blood pressure and to lessen stress.

Boosts Self-Worth

When children are responsible for walking, feeding, combing, bathing, and looking after pets, they will develop more self-worth since they will be playing an integral role in the lives of their beloved animals. As well, because pets can receive and bestow love, children can benefit from this unconditional affection. It will also teach personal responsibility and accountability, which are important qualities that will help kids to develop a good work ethic and moral compass.

Get Active

Sometimes people who do not feel a sense of belonging do not go out into the world as much as they should. They may not get the benefit of regular exercise and movement which our bodies need. Owning a pet encourages children to be more active since they will need to take their dogs out for walks and for play time. Outside they may meet other pet owners and cultivate their social lives. Increased physical activity is good for the body and reduction of anxiety levels, too.

Smile

Pets help children having a difficult or challenging day to smile despite what may have happened at school or in other parts of their lives. Whether it’s their boundless energy, their wagging tails, or their funny antics, pets truly make children happy. When children are amused by their pets' behavior, their dopamine and serotonin levels will increase, which will lead to feelings of calmness and happiness.

Lessen Isolation

Children who lack a sufficient amount of social interaction with other people can benefit from owning pets. Bonding with an animal can improve emotional ties with family members and other children.  Indeed, pets at home can benefit children who don’t have a lot of friends or who lack social networking opportunities. When they take their dogs for a walk, for instance, they can meet and talk to different people in the neighborhood along the way. A word of caution here: children need to understand that not all dogs they meet while walking their own dogs are friendly. So they need to be taught to ask for permission before seeking to pet someone else’s dog. It’s also a good idea to avoid contact with stray dogs.

The psychological benefits of pets at home improve children’s lives in a multitude of ways. Families from all walks of life can benefit from a pet. Parents who believe that their own children may benefit from having family pets, perhaps cats or dogs, should first assess whether pets will fit within their family dynamic. And if they decide to proceed, they will see how psychologically beneficial pets at home can really be.

We Are A Community

By Rasheera Dopson 

Rasheera Dopson lives in Atlanta, GA. Her mission is to empower young men and women in the areas of self-esteem and confidence. She hopes that in sharing her story she can spread the message of overcoming adversity. In her spare time she enjoys blogging, watching 90s sitcoms, and volunteering in her local community. She recently earned a scholarship from NBCUniversal to study communications. She will begin classes at Syracuse University soon. 

Over the past few weeks, I have had a lot of time to think about my experience at the Children’s Craniofacial Association Retreat and Symposium and to say that I’m at a loss for words is an understatement. However, I will do my best to express the impact this organization has had on my life and the craniofacial community as a whole.

First, let me say that being a part of any community is one of the most formative experiences with other people that we may have beyond the family unit. I consider myself extremely blessed to be a part of something much larger than myself. You see, I love using the word community when referencing people with craniofacial conditions, because it sends a consistent message to myself and the world at large that “despite our facial differences we are strong and we are proud" because we have one another.

We all know the famous saying “United we stand, divided we fall.” I feel those exact same sentiments when speaking about the craniofacial community. We are stronger as one.  I express myself so passionately because I am sure I speak for all people affected by craniofacial differences, across the globe, that the words “pride” and “community” have not always been in our vocabulary.  Instead, most of us know well the burden of feeling alone, isolated, and not included.

Nevertheless, there is something powerful when you realize you are not alone. For me, this epiphany came to me at the CCA Annual Retreat and Symposium. I am sure many of you reading this have also found that moment coming into the CCA community -- that sense of safety and support—knowing that you have people who share in your struggles and strengths standing next to you and behind you fighting the greater fight.

This is what I felt at the CCA Annual Retreat. I felt connected and I felt proud. I remember leaving the retreat and walking through the airport so unapologetic, so confident and assured of where I belong. I trusted I was part of a group of people I was proud to represent.  That day walking into the airport I did not do my best to try to hide or ignore the stares, but rather I stuck my chest out because I wanted to be seen. I wanted the world to not only see my face. I wanted the world to know that my face was one out of hundreds of thousands of the different faces with which I was just in community. And boy is our community strong. Even though no single person at the retreat was related to me by blood, somehow we are all connected through our shared life experiences filled with doctors and bullying.

The craniofacial community, though we might be small, is changing the way the world relates to and stigmatizes differences.  I am honored to be a part of a community that displays kindness and warmth, passion, and compassion. A place were a different person can feel loved and accepted. I look forward to sharing the knowledge of my community to all whom will listen because I truly believe our differences can change the world!  

Mom to Mom: A Hug in the Parking Lot

We found this post in one of the craniosynostosis groups on Facebook, and graciously, the author, Xanthe Faulkner, agreed to let me share it on our blog. I believe it's a succinct and beautiful peek into the lives our amazing cranio moms and dads, and a great example of why family networking is so critically important and part of the work we do at CCA Kids. 

***

Why we cranio families are who we are (long!):

So Helmetbaby here is in daycare. And the day he started, 4 months ago, I looked at a boy in his class and thought "Saggital. For sure." But you know how it is - I never crossed paths with his parents, don't know the family, maybe he's already being followed, etc... But we're very public about our son's journey, so all the staff know us and the details of our little guy's condition and journey.

So this morning I was carrying my son across the parking lot towards the school. And a woman I don't know calls to me, softly, and comes over. "I need to talk to you," she falters, "I'm so happy you came just now. The teachers said I should, that I could..." And tears well up in her eyes, and I knew right away. With my son cradled in one arm I wrapped my other arm around this stranger and held her tightly. Of course she was the other little boy's mom, and she had gotten CT confirmation of fused saggital and metopic the day before. "I'm so upset," she said, soft spoken and shocked, "I never expected. I'm beside myself. I forgot all my groceries in the store yesterday. I'm so distracted and scared, I don't know what to do."

She doesn't have Facebook to get support from you all, she hasn't even met with a neuro yet, but I gave her my number. We'll have coffee. I told her my son was fine, more than fine, and that while it had been scary, the results were fantastic. That everything will be okay. And guys, I felt so clearly... That we as cranio parents are the only ones that get it. The sudden fear of realizing they will have to cut your child's skull open and piece it back together. The terror of things going wrong. Worries about their little growing brains. The unknown. And I thought about how people who understand first hand are the only ones who seem to bring any comfort sometimes. You can't fake having been there. And once you've been there, you are driven to reach out to others standing in the new fear,

To hug them in the parking lot,

To whisper,

"I know."

Thank you all for being that for me and so many other families. 

Thank you for teaching me how to be that for others. XO.

-Xanthe Alyse Chefurka Faulkner

Taking On College: Part of the Journey

Today on the blog we have two stories from our CCA Alums & Adults committee. Growing up with a facial difference often involves a lot of talking about yourself: Introductions... answering questions... explanations... and as we move into college and career, sometimes that means giving interviews, too.

As both Joe Brooks and Casey Deakins can express, there are good days and bad days but in the end, we only increase awareness and acceptance by making connections with others. And that is just what these two CCA Alums are doing well!

Today we're proud to feature a reblog from The Blue & Gray Press, The University of Mary Washington's student newspaper where Joe Brooks is a student -and- a personal graduation essay from Casey Deakins, who just graduated from The University of Central Florida. Enjoy these stories and if you're interested in joining the CCA Alums & Adults, contact us on Facebook.

***

By NANCY MILROY

“My face looks like this. It doesn’t mean I’m any different from you. I have Otopalatodigital syndrome, a craniofacial disorder.”

When Joe Brooks, a junior music major at the University of Mary Washington, contacted me, I was unfamiliar with this syndrome and disorder. Joe handed me a pamphlet from the Children’s Craniofacial Association (CCA) and advised that I read it. Reaching out to the Humans of UMW community is part of Joe’s effort to inform us that September is Craniofacial Acceptance Month.

Craniofacial conditions vary, the most common being cleft lip and palate. You may be thinking, “Acceptance, sure. That’s easy.” But do you, reader, actually practice this?

Acceptance is more than the quick smile you formulate when you pass a person with craniofacial differences. Acceptance is recognizing an individual’s qualities without the motive to change them. CCA’s message of acceptance is that “beyond the face is a heart.”

When asked if he had faced a lack of acceptance at UMW, Joe replied, “Not on campus, no. It was in middle and elementary school when I did not feel accepted.”

However, Joe’s sentiment changed when he began to attend Cher’s Annual Family Retreat.

“I got this shirt in Arizona at the retreat. Children who have different craniofacial syndromes come together and are reminded that we are not alone, that we all have similar stories,” Joe said.

These stories are centered around the many surgeries that individuals with craniofacial disorders undergo. In 2009, Joe had a surgery that kept him in the hospital for three months.

At the close of the interview, I asked Joe a spotlight question traditional to Humans of UMW.

What is a metaphor for your life?

“My life is climbing mountains with rough terrain. I’ve had to climb different obstacles to get to where I am today. I’ve had to overcome the mountain of surgeries, the mountain of recovery, the mountain of proving to people that I can do things that they can do and the mountain of overcoming my own challenges.”

What mountain are you climbing now, and have you reached the top? If not, when will you?

“The mountain of graduating. I’m not on top yet, but I’m climbing.”

***

In late 2008, I was sitting in a meeting with my dad, listening to a local college essentially tell me I wouldn’t be able to graduate college. That night, after the meeting, I wiped away the tears of frustration, and told my reflection in the mirror, “I’ll show them.”

On August 8^th, 2015, a little later than anticipated, I crossed the stage of the “Dungeon,” aka, the University of Central Florida CFE Arena and received my Bachelor of Science Degree in Public Administration with a focus and professional certificate in Nonprofit Management.

A ten year long journey finally came to a close. On my journey, there were tears, frustration, and countless amounts of money spent on textbooks (...still trying to figure out that one but I’ll leave that story for another day!). But most importantly, I had support. Support of friends, of family, and my faith. They kept the little voice inside me going, the one that said, “I think I can, I think I can!” like the little engine from the children’s story. I would have given up in 2008 if it wasn’t for this support.

If I were to give a piece of advice, I would say to believe in yourself, and surround yourself with those that believe in you. They will drown out the ones that say you can’t. And, to the world, I say this….you ain’t seen nothing yet!

- Casey

***

Congrats to these two and thank you for sharing your stories during #CAM2015!

Talking to a Person with Differences Can Make You Kinder

Today on the blog we have a video of a research study conducted as a part of the BBC Documentary by Adam Pearson, "The Ugly Face of Disability Hate Crime." This excellent documentary follows Adam as he seeks to uncover some justice regarding disability hate crime (including cyberbullying) and also as he tests out his theory that engaging with people with facial differences can in fact change how individuals will act towards people with differences in the future.



This documentary is certainly timely, because as students head back to school, it's important to help them reach out to their classmates and educators about their conditions. By proactively scheduling introductions and presentations, students develop the skills of assertiveness, positive non-verbal communication, and self-confidence. Learning to talk about one's self can be difficult for anyone, and can be even more so with a facial difference. However, using tools and resources like our Wonder classroom kits, students can proactively set the tone for a school year built on kindness, empathy, and respect.

Please contact us if you'd like help setting up a presentation at your school.

Standing Up to Cyberbullying

CCA wants to make the world a kinder place.

One way we accomplish that mission is to prevent and end bullying, in schools and online.

Unfortunately, many of our CCA Alums & Adults are familiar with bullying tactics and have been bullied by classmates, peers, and even adults. Today's post is a personal account of how CCA Adult Frederick Seitz handled a bullying situation. 

Stay tuned this week for informative, inspiring posts about living life beyond bullying. 

Together, we'll #EndCyberBullying through education, empathy, assertiveness, kindness, and courage.

Be Ruthless to #EndCyberBullying

by Frederick Seitz 

Little over four years ago, in the September of 2010, I bought my first car -- a 1999 Jeep Wrangler Sport. I saved up a lot of money from my birthdays, holidays, and special occasions over pretty much all my life up to that time. I was in my senior year of high school at the time. I was thrilled to show it off to my friends, classmates, and family. Little did I realize that only a week later, I would become a victim of cyber bullying on Facebook.

A female classmate wrote a Facebook post that didn't mention me by name directly but described attributes that people knew were only related to one person: ME. I don't remember her exact words but the post mocked my disabilities including my craniofacial difference, my deafness, and even my religious beliefs. It was clear to me that she was extremely ignorant of my true abilities and of the fact that deaf people can really do anything EXCEPT physically hear sounds. She mocked my ability to drive and went far to question why I even have a driver’s license.

Unfortunately for her and lucky for me, her post backfired completely on her.

Soon, dozens of comments from my classmates posted, all rallying behind me as they called her out for cyberbullying me. I remember reading the comments and I was surprised at how many people were defending me. That time was one of the times I learned who my real friends and allies were. The next morning after I learned of this harassing post, I brought a printed-out hardcopy of it to the principal’s office. It wasn't long before the word went around most of my other classmates about this disturbing incident. Shortly after this, I confronted this female classmate face-to-face and told her that I knew what she wrote about me.

What happened next proved what I suspected to be true: she claimed that she thought my deafness and my craniofacial difference would impair my ability to drive.

Honestly, her excuses enraged me. How could she - how could anyone - believe this about me?

However, I used this event as an opportunity to set the record straight in front of my peers and to understand what motivated her actions.

I was proud of my ability to save money from hard work and a generous family, which I am fortunate to have, and I was insulted that she would publicly belittle me and assail my abilities, when I am clearly thriving in this world.

Whatever motivated her actions: envy, insecurity, or anger, I knew that her issues did not have to become mine. Responding to cyberbullying takes courage and empathy, assertiveness and ruthlessness.

To respond with ruthlessness means:

Do not show them that you're afraid, ever.

That's how bullies control you: fear. But beyond your fear, realize that two common reasons people bully are out of ignorance and for control. You can correct the ignorance through empathy and education and you can remain in control of the situation by choosing to be courageous and assertive. 

Rely on the people who come to your defense, too, for they are your true friends and allies. Remember that.

The Best Advice

THE BEST ADVICE I EVER RECEIVED

www.lovealonecreates.com

            As a new mother four years ago, I felt lost in a world full of competent and happy parents who appeared to have this “parenting thing” figured out; of course, I accepted their unsolicited advice, which I soon discovered was anything but empathetic or compassionate.  Until becoming a mom was a personal experience, I truly was clueless that people are so extremely opinionated and often judgmental or abrasive when it comes to (what I call) different “camps” of parenting extremes. 

            On the one hand, I had veteran moms telling me that breastfeeding is the only way to go, and they were such purists that their worldview included the belief that feeding your baby formula was almost a sacrilege, because it was so unnatural.  Personally, I struggled with nursing due to postpartum issues and a general lack of knowledge or will to exclusively do so; there is an independent and often fiery spirit in my nature that beckons for me to rediscover my identity apart from the title of “mom” or “wife.”  At times, I simply felt smothered and suffocated if glued to my newborn baby 24/7.  These purists were also the ones who suggested we try co-sleeping and skin-to-skin contact in between co-sleeping sessions.

            The thought of this made me nauseated, mostly because these were practices that had not occurred to me prior to our oldest daughter’s birth.  Ben and I had a nursery all set up, complete with new crib, and we fully intended to use the crib immediately upon taking our daughter home from the hospital.  But I also felt sick due to guilt, because I truly felt these women were those “supermoms” you read about who can honestly do anything and do it with incredible fervor and gusto.  Alas, I fell short of this title, and so I thought myself a total failure.

            Then there were the parents who cautioned me about discipline once our daughter approached her first birthday.  “Spanking is so passé,” they would explain with nonchalance mixed with self-righteousness.  “Corporal punishment simply doesn’t work and isn’t rooted in any scientific evidence.”  There I went again with that internal dialogue as I listened to these soliloquies from different moms – some close friends, others acquaintances and still others who were strangers.  In my mind, I assumed that a quick swat on the rear now and again wasn’t going to permanently damage my child; of course, I concluded this would be a last resort for discipline and not my go-to response every time a behavior needed to be corrected.  Yet I still felt inferior in some way and as if my parenting style was “wrong” or “bad.”

            Then along came a wise sage of a woman – my own mother.  “You do what is best for your family,” she assured me one day as I sobbed to her of my interminable faults and failings as a mom.  “No one has all the answers to parenting, even with all of the books out there on the subject.  You have to follow your own conscience and be at peace with the decisions you know are best for your child and your situation.”

            Somehow in hearing that simple wisdom, my interior storm ceased raging and was replaced by the serene waters of truth.  From that day onward, I have come back to this beautiful and timeless piece of advice, and it has centered me, calmed me and otherwise helped me stay focused on taking each day at a time to do what is best for our daughters – knowing they are unique and cannot be stuffed into a universal box.  

-Jeannie

"Plants aren't children..." and other great advice

The most well-meaning, but for me, useless, piece of advice I got while Shierry was a newborn was to "cherish every moment, it goes by so fast." I was grateful time was going fast. I don't really understand what "the speed of light" is, but with a completely helpless, confusing newborn in my care, I wished time was faster than that. I found the constant doctors’ appointments actually easier to deal with than a crying, inconsistent baby. At least at the doctor, I knew exactly what to do. 

Now that she’s an utterly adorable and charming eight month old, that advice makes a bit more sense. But of even more relevance to me at the moment are two adages of my grandmother. “Plants aren't children, you can throw them out” and “Who cares, as long as they’re potty-trained by kindergarten.”

Literally, if your kid is being fussy or being hilarious and you forget about watering your plant for, say, five weeks, throw it out and feel that sense of relief. It’s alright, you can get a new one. Or not. It doesn't matter. Maybe you’ll find that you no longer care about plants or, if you’re like me, that not only do you no longer care about plants, but that you only ever cared about plants because you wanted people who came to your house to think you cared about plants. This mantra can be extended to other aspects of your home. The dishes aren't children, they can stay dirty in the sink for an extra day. The laundry isn't a child, it can stay abandoned, out of sight for however long it takes you to run out of clothes. 

As our babies turn into toddlers, they’re supposed to acquire all these new skills on a roughly predictable timeline. However, we were super late starting solids because, with her complete palate cleft, it took us so long to even find a bottle that fed her formula efficiently. Without a natural barrier, even the completely pureed foods go right up to her nose and out her nostrils. She sometimes panics when the food backs up in her nose and she can’t breathe. Then, the meal is over. I don’t know this for a fact, but it seems like her crawling is a bit delayed, and I can’t help but feel that it’s partially due to all the time she has spent in the hospital at pivotal developmental moments. As for her speech, she tries, she babbles constantly, but the sounds are not the syllables and mimicking of the other kids. But, whenever I fret, I remember my grandmother’s words. “As long as they’re potty-trained by kindergarten” to me means, don’t worry about whatever other supposedly normal and perfect children are doing when. When she’s able to and interested in doing something, she’ll do it. We can’t will anything to happen. All we can do is help her along. The only thing we can force her to do on time is get to her specialist appointments. 

-Rachel

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.

For more info on Sarah's story, check out this link: The Chronicle Herald

--Erica

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

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!