Tuesday, April 16, 2019

Spotlight on Local Resources: Transitioning Into Adulthood

By Kara Jackman

It is that time of year. Graduation. Commencement, or the end of education provided by the state are all right around the corner. Parents hope that with each year their children grow and become more independent. Independence is encouraged, so long as there is a structure to each day, a beginning, a middle, and an end. So what do your budding adults do next?

Volunteerism and Internships
If you are thinking about taking a gap year, consider volunteering or an internship. Think about the activities and things that interest you and find a volunteer opportunities near you. If you like animals, the ASPCA has chapters all over the country.  If you like people, find a museum, church, or service organization that helps people. A great place to search for paid and unpaid internships is Indeed.com. Local council on aging, hospitals, and homeless shelters are always in need of an extra pair of hands. As a volunteer or intern, you will gain on-the-job skills, increase self-awareness, and interpersonal skills.

Day Programs
For adults in need of additional care, a day program could assist in helping you and your family improve the structure within your homes. One place to start would be looking for an adult day program in your area. Head over to Google and use the search terms "local resources for adults developmentally delayed." Or try placing your state or region name in the search box and include the terms "adult day programming" to see what comes up.

Let's take Texas as an example. What came up as a result of the above search? A helpful list of Home and Community-Based services in Texas. In addition, there are Texas Health and Human Services's Local Intellectual and Developmental Disability Authorities Directory. Each state should have some resources like these. The Arc is a national nonprofit that helps individuals with intellectual and developmental disability live active and engaged lives. They have chapters in each state. Please look up resources near you, if you need them.

Adult Day Care vs. Adult Day Programs
Now, to be clear, I am not talking about "Adult day care facilities," but I am talking about a place where an adult with mildly compromised cognitive and intellectual abilities could go to grow their vocational, leadership, and interpersonal skills. For example, Texas has a list of a variety of different places that fall under the category of adult day care or adult day facilities. Many of them are for people that need round-the-clock medical and physical care. Others may be more geared to higher -functioning adults. There is only one way to find out what each facility has to offer, call or email to ask questions.

Adult Programming - What To Ask? 
Be sure to review what each location has to offer, where they are located in relation to your work or home, and the kinds of needs that your newly-minted adult requires. You must keep all these elements in mind when searching for the right placement. Ask lots of questions about the locations: cleanliness, services, and how they interact with the communities they serve. If you know another family in the day program's community, ask them what they think of their experience. Ultimately, finding the right place is like developing a friendship or relationship, you will know the right fit when it comes along. 

Humans, Creatures of Habit and Routine
While money and job training are nice, the goal is to achieve a daily routine as your young adult transitions our of school and into the real world. Think about the flow of your day. In the morning, you wake, shower and have breakfast. Then you go to work. At lunchtime, you stop, eat something, or maybe work out. You return to work and finally return home for dinner and time with the family. This is how we go through our days. Adults with disabilities need this structure, too. Without it the abilities and knowledge they do have will wither. Socializing will become more difficult and overuse of TV, social media, and other technology could turn into an unhealthy outlet.

Humans are creatures of habit and routine. Finding a place where the adult in your home can go to work, volunteer, intern, or be part of a community in a day program could open them up to improved socializing, sky rocketed self-esteem from a hard day's work, and a bunch of new experiences they can share each night at the dinner table.

Other Resources 

The Arc 

U.S. Health and Human Services Website

Ask The Therapist: Getting That Guilt Under Control

By Jackie A. Castro, MFT

Did you know that more often than not, people who are compassionate to others, are downright mean to themselves? They are forgiving of others, but extremely harsh on themselves.

They are overly committed, work extremely hard, and always strive to do their best. When things go well, they hardly take notice. Yet, when something goes wrong, they are the first person to blame themselves. They then berate, condemn, and speak to themselves in a harsh voice. They go on and on about what they  'should have' done, or not done. Oftentimes, the self-deprecating rant goes on for days only to accomplish nothing. Sound familiar? Do you know someone like that? Maybe yourself?

I'm describing something I call 'self guilt,' as opposed to real guilt like the guilt felt after committing a crime or being hurtful to another person. Basically, self guilt is a feeling we 'sentence' ourselves to for something that's difficult to understand. Most often, we see this feeling arise in people who have experienced trauma.


  • You are  in a car accident. Before you even step out of the car, you are taking blame.
  • You were abused as a child or adult, and blame yourself for provoking the abuser.
  • You are a mother and berate yourself whenever something wrong happens to your child.
Or perhaps, you are a parent of a child who was born with a facial difference. You constantly find fault with yourself. You obsess about what you could have done differently even though. intellectually you know the truth. Emotionally, you blame yourself and live in a constant state of guilt.

The Origin of Guilt
Guilt is a way to explain that which we cannot understand. It's almost always about putting the blame on ourselves, when we are not at fault. No one is.  This is especially true for parents who have a child born with a facial difference. Whatever the doctor told you about the genetic origins of the craniofacial condition is often dismissed. Putting blame on yourself somehow feels more logical, even though in truth, it's false.

The idea of self-blame and self-guilt comes from the very human desire for explanations. Parents feel very, very responsible for the well being of their children. Once again, when things are right, we feel good, but when things are wrong, we tend to beat ourselves up.

In Therapy
As a therapist, I routinely see people who are highly anxious or very depressed as a result of having a child born with varying medical conditions, mental health, or behavioral issues. While we assume that the guilt, anxiety, and depression are a direct result of the event, in this case the birth of a child, it's actually not true. The emotions actually are born of our own ingrained, personal thoughts and beliefs. We have carried these emotions, beliefs, and thoughts with us for most of our lives. Most of these thoughts manifest themselves on an unconscious level. In therapy, I work with parents to untangle these beliefs, thoughts, and emotions.

Parents universally come to therapy with feelings of guilt. They start off by telling me what they think they did wrong during their pregnancy and how they are currently feeling badly about their child's health, happiness, and social issues. They speak in terms of absolutes. I often hear phrases like "It's all my fault," or "My child is suffering because of me."

These parents go on to tell me that they are constantly feeling anxious and upset. They worry and second guess their decisions about medical procedures. They imagine that their child is taking a turn for the worse. They are concerned about bills and the high cost of medical procedures. Eventually, they begin to doubt their abilities and feel inadequate for not being good enough. They feel both overwhelmed and upset. It's very common for nervous parents to wind up as highly, depressed parents. They have problems coping with life and end up feeling hopeless and sad.

How To Combat Guilt
Feelings happen not from the event, but how we think about the event. So while it was shocking to hear the diagnosis, and natural that we would experience a myriad of emotions, we must understand that these thoughts and feelings are falsely created in our own minds. I say this, not to blame you, but to inform you that sometimes our own mind can be our worst enemy. Most of us have no idea that our thoughts and feelings are connected.

Cognitive Behavior Therapy (CBT)
Here's the good news. You can learn how to manage the thoughts  that trigger bad feelings. You can learn how to identify how these thoughts, or cognitions, are simply not true.  The goal is not to think positively. Rather, the goal is to think rationally, or in a more balanced fashion.

I often utilize a type of therapy that is known as Cognitive Behavior Therapy (CBT). CBT is considered to be one of the most cutting-edge, effective ways to manage feelings that get in the way of living happy, productive lives. CBT helps you look at your thoughts, identify the distortions, and reframe them in order to see a more realistic truth.

For example, if your child is bullied, we assume you will have a reaction. What do you think it will be? Your first thoughts will probably be connected to anger, sadness, or fear. Believe it or not, the feelings that occur are not so much about the event, but your thoughts about the event. See if you can identify what feeling would occur with each thought:

"It's not fair that my child has to go through this."

"This is all my fault. I'm the one who created this child and they are suffering because of me."

"This is just the beginning. What if this bullying gets worse and worse?"

I'm sure you know the answers, but just in case, let me clue you in. Whenever we have thoughts about things not being fair, you are going to feel angry. When you blame yourself, you are feeling guilty. And, when you worry about the future, you are guaranteed to feel anxious.

Upsetting feelings are almost always a byproduct of a thought. And nearly all of these upsetting thoughts have some kind of cognitive distortion.

Rethink Your Guilt With CBT
When we think in terms of self blame, we will feel guilt. The feeling of guilt is something that was most likely learned in the past, instilled in us while growing up. CBT will help you to unlearn this pattern of thinking, replacing it with more helpful ways of thinking.

Going back to the example of a child getting bullied, we can learn more helpful ways of thinking. I refer to this as neutral thinking. Neutral thinking allows us to observe and accept a situation for what it is. If necessary, we then can think calmly about any actions that are necessary to take. We learn how to behave rationally as opposed to emotionally.

Dialing It Back
You might believe that experiencing guilt can be helpful, and you have a point. Guilt is an emotion that basically keeps us from doing wrong and many would say it helps keep a moral compass. However, if you make a list of how guilt helps, versus how it hurts, chances are good that you will find it hurts more than it helps. That's where I tell my clients to 'dial it back'. Instead of feeling guilt at one hundred percent, maybe you'd like to feel it at thirty percent or less.

Reframing Your Thoughts
Guilty thoughts center around disappointment. You feel as if you didn't live up to the high, oftentimes, unrealistic standards you impose on yourself. These thoughts generally have a 'should' statement attached. 'I should have done this, or 'If only I'd done that.' How are these thoughts helping you right now? They are generally thoughts that relate to the past. Can you go back in time? Do you have a time machine? My guess is that you don't.

Be Kind
Instead of beating yourself up, it's far more productive to speak kindly to yourself. Talk to yourself the way you would talk to a good friend who was going through the same thing that you are. You would not judge. I bet you would remind that friend of all the good things they've done. Ultimately, you'd give the friend a big hug.

Sometimes we need to give ourselves that hug. We need to remind ourselves that we are doing the best we can despite a boat load of challenges. Most of you were ill prepared to raise a child with a facial difference or medical challenges. You literally had to take a crash course in both childrearing and the complicated diagnosis, while keeping up with the daily responsibilities at work and at home. It's a lot!

Give Yourself A Break
When you find yourself speaking in absolutes or predicting a future that you can't foresee, stop. Take a deep breath and fight that negative thought with the truth. You'll find that almost all of our absolute thinking contains many shades of grey. Our faulty thinking does not provide the answers we are seeking.

Be gentle with yourself, focus on real truths, like the good you do rather than thoughts that scold or admonish you. Guilt brings us down while compassion brings us up. Be as good to yourself as you are to others. Be aware and conscious of your thoughts.

In Summary
Guilt is a a self-imposed emotion. It is based on our own moral standard of what we believe to be right and wrong. Generally speaking, it's based on the idea that we have to be perfect in order to be good. The feeling is almost always factually incorrect and unhelpful.

Self guilt is always felt by people who are inherently good.  We have good intentions and want to do our very best. The problem is that the feelings often work against us. We end up feeling disproportionately bad about ourselves. That's simply not fair.

The good news is that we can learn how to mange these emotions so that we can think more neutrally. Neutral thinking will allow us to see things clearly and make good, sound decisions based on fact, not feeling.

Learn how to be good to yourself. Remind yourself of your own worth and value. Instead of focusing on what you did wrong, tell yourself what you did right. Stay in the moment. Learn self love and acceptance so that you can share these positive emotions with your family.

Jackie A. Castro is a licensed Marriage Family Therapist with a private practice in Granda Hills, California

© 2019 Jackie A. Castro, MFT

Monday, April 15, 2019

30 Stories 30 Faces 30 Years: Emily and Service Dog Hank Merrill

What CCA Means To Emily & Hank!

B - Because everybody treats us as equal rank!

E - Easy to be who we really are!

Y -Years go by quick but our CCA family is never far!

O - Oodles of fun and allows hank to be my emotional glue

U - Understanding, Acceptance & #BeYou!
                                                                                   - The Merrills 

Hank Merrill is a six-year old, Australian Labradoodle born in Sanford, North Carolina.  A few years ago, Hank flew on an airplane to join the Merrill clan in Tinton Falls, New Jersey. Mom, Nancy, and Dad, Gary, surprised Emily with the dog to help her “keep calm and assist her with walking.” Emily’s sister, Abigail, was excited for the new addition to the Merrill household, too. 

Nancy says, “Hank’s purpose is to bring peace, serenity, and love.”  Emily says, “Hank is my world and he has made me more independent.” When Emily and Hank go out together, she says, “People focus on Hank, not me.” He goes to every appointment at Children’s Hospital of Philadelphia (CHOP) where Emily is treated for Goldenhar syndrome and a genetic heart condition called Tetralogy of Fallot.  CHOP’s surgical team allows service animals to lie in bed with patients as they drift off to sleep before surgery. Then, Emily and Hank are reunited in the recovery room after it is all over.  

Hank is with Emily at each physical, occupational, and speech therapy session, too. Hank loves to train, perform tricks, chase tennis balls, pose for pictures on Instagram where he @servicedoghank and @em.the.warrior have a large and loyal following. Hank hates water and being groomed. He is also not a big eater, but Emily helps him with that too. 

Everyone in town knows Hank. He is a bit of rock star in his own right! Perhaps, Nancy puts it best, “He allows Emily to be accepted better in an unaccepting world.” 

Saturday, April 13, 2019

Innovative Ways to Donate: Donate a Your Used Car, Truck or Boat

Reduce Your Stress with One Less Vehicle. Donate It to Children’s Craniofacial Association.

CCA Kids provides free and convenient pick-up for all vehicle donations! From cars, trucks, RVs and more—we accept almost any type of vehicle donation that meets the following basic requirements:

1. Vehicle has a clear title.
2. Vehicle is in one piece but does not need to be running.
3. Vehicle is tow truck accessible.

Donating a vehicle is easy and tax-deductible! The proceeds help CCA Kids continue to empower and give hope to individuals and families affected by facial differences.

Simply call 877-570-4222 or submit the secure online donation form at https://careasy.org/nonprofit/childrens-craniofacial-association.

Our expert Donor Representatives are here seven days a week and will reach out to you to arrange for your vehicle to be picked up at a time that works for you.

Donate your vehicle today! Our Vehicle Donation Support Team will take you through the process from start to finish.

Tuesday, April 9, 2019

#WonderWednesday: Madisyn Helps Western Pennsylvania Students Choose Kind

Madisyn and Connoquenessing Valley Elementary School teachers. 

Editor's Note: Many thanks to Madisyn! She encouraged her school to #choosekind. Teacher Audrey Buban shares what it is like to have Madisyn in the classroom in the text below.

Thank you for your amazing fundraising, too. $800 is a huge amount. What an impact you are having! Just think, everyone who purchased one of those bracelets has a reminder on their arm at all times to #ChooseKind. You are making the world a better place one wrist at a time. 

Connoquenessing Valley Elementary School within the Seneca Valley School District has been spreading the awareness and acceptance of craniofacial conditions. We were motivated to action by one of our first grade students. Her name is Madisyn and she has Crouzon Syndrome. This year we watched her undergo yet another surgery with an inspiring level of positivity and bravery. Over the past two months we have:

1) Read and discussed the books "Wonder" and "We Are All Wonders" by R. J. Palacio during class meetings.
2) Made a school-wide kindness chain with an act of kindness described by each of our students on each link of the chain.
3) Had the wonderful pleasure of having Nick Weise (an amazing gentleman who has a craniofacial condition)  come and share his story with our school.
4) Raised $800 for the Children’s Craniofacial Association through the sale of "Choose Kind" Bracelets.

We are so proud of our sweet Madisyn. She is strong, feisty, funny, and kind. She is a role model for her peers and loved by our entire school."