Things can change pretty quickly when there is a medical emergency or illness.  It is important to receive the best care to have up to date information for both the staff and the family members.  How often do medications get changed, or medical devices need to be removed or hooked back up during a hospital stay? Providing personal care that your loved one may not want from the medical staff can mean more co-operation from your special needs patient.  Having a family advocate in the room can help ease discomfort if your patient is paired with a roommate who is NOT special needs.  These are all issues many people have not thought about.

Keeping a small notebook by the bed to write down any changes that occur during a change in staff shifts can be critical to making sure that your loved one receives the best care by making sure that everyone is on the same page.  You as the family member patient advocate knows your loved one the best.  You know what is normal for that person.  You know how they communicate, how they act, how well they understand questions and instructions…the hospital staff needs your input.

Because hospital stays can be lengthy…it is wise to have 2 or 3 people who are willing to rotate with you that you trust to stay in the room while your loved one is hospitalized.  This means that extra eyes and ears are available when the doctors, nurses, aides or technicians come in to discuss care with your patient.  Plan ahead and discuss these issues with other family members or trusted friends who have a good relationship with the patient and are willing to stand guard over them while they must be hospitalized…you won’t regret it. 

There are things you can do to help out the staff and make your special needs loved one more comfortable.  Just being there for moral support is important.  Keeping a trusted loved one nearby can help to keep the patient calm and co-operative when change occurs.  Take along hand-held video games, or stuffed animals or books or movies…anything that you know will help the hospital room to be as familiar and comfortable as possible.  As I said, you know your patient best…you know what works for them…maybe it is a certain kind of music that they like or that brings them comfort. 

Whatever you can do to reduce stress and stain will help your loved one to heal faster and get them back into their comfort zone as soon as possible.  Do you have suggestions for what works for you?

Fashion Eyeglasses Accessories Add Charm

Let’s be honest, most children who are told that they must wear glasses will often not be thrilled with the idea of having to wear eyeglasses.  For many children, it is the idea that others will make fun of them or, cause them to be viewed as being different from other children their own age.  Being bullied because you are visually impaired and have to wear glasses can cause a child to refuse to wear them, out of fear of being made fun of.

No one want to be made to feel self conscious about themselves, especially at certain ages when it is most important to fit in with their peers.  We’ve come along way since the days of having  a choice between wearing heavy black plastic frames or  wire frames that were basically your only choices.

Still, everyone likes to look their best and there are many fashion frames from which someone can choose to fit the shape of their face and their sense of style.   On the other hand, if you are looking to change things up so that you don’t get bored with a certain look once you’ve purchased your eyeglass frames; there wasn’t much you could do except buy multiple sets of glasses…until now.

Ros Guerrero is the owner of a company that has solved this problem.  She invented eyeglass charms that add a bit of decorator style to your eye wear frames.  Some of these charms are classic styles that are a great way to dress up your lenses for a night out…others are kind of funky colorful and fun charms.  There are charms for adults, for girls and for boys too.  I like the fact that there are charms that a child can choose from in their area of interest of art or sports.

There are also seasonal charms, pets/animals, colorful flowers, or charms that create awareness of issues such as breast cancer.  Ros has created a variety of charms for you to choose from.   These make great gifts too for just about any occasion!  They are easy to attach and the fun is in the conversations that take place when others notice the charms attached to the glasses.  It is a wonderful way to break the ice for children who may have trouble initiating conversations with others.

The really neat thing about Ros’ company is that her daughter Gem was her inspiration.   One day, Ros designed and attached her first set of charms to Gem’s glasses and sent her to school.  Gem received so many compliments, in her special needs class, that the idea of  “Ficklets” was born.    Getting noticed wearing glasses, for a child, is not always a positive experience.   Ficklets charms can positively influence how a child perceives wearing their eye wear.  After all, if a child won’t wear their glasses how can they possibly help their eyesight?  Much of a person’s education is learned visually.   If a persons vision is impaired in any way, it is only logical that getting them to commit to wearing their glasses is important, right?

Ros & Gem~*~ The Designer & The Inspiration

As you know, children aren’t the only ones who wear glasses.  What’s really great about eye wear today is the fact that there are so many choices.  Still, it is the same for adults…who wants to wear the same old- same old look, day after day.  There are classic charms for female adults as well.  The added touch of these charms can dress up your look at work or, for a night out making you feel stylish and attractive.  Everyone is at their best when they feel confident and assured about their appearance.  Changing your look can be costly.   It’s a lot more affordable to change up the look of your present glasses by purchasing Ficklets than it is to go out and purchase an extra set of frames.

Do you know someone who refuses to wear their glasses because they are self conscious about the way they look?  Have you ever known someone whose life was changed because their vision was improved by wearing glasses?  If so, then you understand the importance that Ficklets can play when it comes to self esteem and wearing prescription glasses.  Are you thinking of someone in your life who would appreciate a pair of Ficklets?  If so…what are you waiting for?  Thanks Ros & Gem for helping us to see things more beautiful in life.

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Guy’s health began to deteriorate, however. A surgery from which he did not recover well left him with memory issues, confusion, and lethargy. It was an exceedingly painful decision, but it needed to be made: Guy needed to be placed in a nursing facility for 24 hour care. At the time of his arrival, the staff estimated he might linger for six months. He was weak, thin, depressed, in great pain, and was very confused. He was 29 years young.

It was about this time in his life that his Services Coordinator, who had been a faithful partner in so many transitions in Guy’s life, transferred to a different office. He would be served by a new coordinator. I will always remember the young dark haired beauty who arrived, curls bouncing, carrying in the stack of folders pertinent to Guy’s case. We loved HER at first sight, too! She was a mighty advocate for as long as she worked with Guy.

Over a decade, Guy’s health had significantly improved. Because of what Mom had learned about water, supplements, sleep systems, energy medicine and a plethora of information he was able to participate in another workshop setting. It was with great joy that he became able to live in a Group Home. He would miss his friends at the Nursing Home but a Group Home would mean more opportunity for learning and a more upbeat existence.

Things with the agency sponsoring the group home began to unravel at the same time we parents needed to simplify our lives. We consulted our beloved services coordinators-past and present-for answers to our dilemma.

As we were debating our course of action we learned of a brand new agency with a fresh vision and hopeful philosophy. Could we trust this new agency? Would they let us down?

After a VERY rough start to the beginning of a chapter in life that put those step brothers back under the same roof, we have met the people who will be caring for both guys.

These people WANT our boys. They have a home that is laid out so as to accommodate them. They have children and relatives who will embrace them. They seem to be well qualified and well trained for the job they have accepted. This amazing couple, and their family, came to the agency at THE PERFECT TIME. I am persuaded it is a ‘God thing’!

Nothing in life is certain. But we are feeling mighty elated! We have no control over things like our kids’ lives, so we must TRUST that Divine Providence is at work.

Special needs have become special blessings on so many levels!

This morning we are marveling at the synchronicity of how our boys are enjoying a quality of life we dared to hope might be possible. If it is not synchronicity; if not a God thing, then, pray tell, what IS it?

Connie Baum

If you would like to learn more about Connie you can check out her Health And Wealthy site

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Is it Synchronicity?

Any parent of children with special needs knows the management of their care can be challenging from the inside out.

If those needs are apparent at a child’s birth, there is shock and a tsunami wave of emotion ranging from fear and anger to guilt and sorrow. There is loneliness, worry, and confusion, too.

When those abate-or diminish-there is the day to day routine which can be punctuated with medical appointments and crises; sleep deprivation and difficult decisions.

When special needs children reach adulthood, it most likely means their parents have reached Social Security status. What about the perpetuity of the care of precious, special offspring?

Let me share with you a story:

Our little fellow had an assortment of birth defects that meant his birth parents were unable to care for him. He was shuttled from hospital to hospital until he was three years old, at which time he became available for foster care.

As this little boy was enduring surgeries to correct his anomalies our own family was mourning the loss of four babies who, for various reasons, did not survive their births. Because we wanted to round out our family to 4, we applied to the State to be foster parents.

Little Guy Foster arrived at our home on a blistering June day, accompanied by a social worker and her aide. Guy wriggled a lot and it was a full time job to make sure he stayed inside the car!

SIDEBAR: This was in the era prior to child car seats and seat belts! END SIDEBAR.

Guy had been described to us as a blue eyed charmer who was in need of an emergency placement. We later learned that the woman who planned to foster him for the long term had a family emergency of her own and was unable to accept this placement. We also found out that our home was the THIRD home in 21 days; the FOURTH in a month!

There was magic in the moment. He reached his little arms out to all of us and directed his greeting to me: “HI, MOM!” We all fell in love with one another that day.

Life with Guy was never dull. There were endless rounds of medical appointments and clinics; there were his strange behaviors and made-up language; we marveled at his will to do what all our kids were doing, despite the physical challenges and intellectual differences.

Along the way, Guy Foster was named Foster Child of the Year. He got to hug “his” Governor on TV the same day he ate lunch with him!

When he graduated high school and walked unassisted across the stage to accept his Special Ed diploma from the Governor of our state, another of “his” Governors, he got a standing O and it was quite the moment.

Along his journey from his arrival to our home and high school graduation he had endured many surgeries, three episodes of long term coma, in addition to many other ailments. He was a trooper who could laugh at himself. AND HE MADE US LAUGH, TOO!

Our nest began to empty but Guy stayed at home with Mom. There was Adult Day Care and he was a people person who knew everyone in our neighborhood.

When Mom remarried it created a blended family. Guy’s new step daddy had a special needs son, too. He lived in a Group Home and attended a workshop. Guy remained in the home we had shared and continued to attend Adult Day Care. We checked on him often to make sure he was eating well and managing successfully. When we found him unconscious, in need of an emergency shunt revision to correct spinal fluid, the decision was made to put him into a Group Home so he would never be alone.

He lived with his step brother and one other housemate. They all bonded and have remained close friends.

Guy’s health began to deteriorate, however. A surgery from which he did not recover well left him with memory issues, confusion, and lethargy. It was an exceedingly painful decision, but it needed to be made: To continue reading read part 2 here: http://www.growingupspecial.com/special-needs-finding-a-place-of-love-acceptance-part-2/

If you take the time to watch this video; you will understand the title of this blog post. Often, if we will just remove the limitations that others put on our special needs loved ones abilities; we will see them bloom and grow. How much of the world is kept from a special needs person because someone else thinks that they couldn’t, or wouldn’t, be capable of more. I love this video because it is a reminder that we all need room to spread out our wings just to see where we can go! Encourage them to explore their skills and talents; or, to pursue their interests … and never underestimate a special needs persons ability to achieve.

Until recently the students only had half of the building that houses this program.  Now they have the full use of the building and the students also perform a great service to the community by sorting and recycling the cities trash.  Here again, updates have been taking place.  They sort the plastics according to their number which differentiates one plastic from another.  Then there is “junk” plastic that doesn’t get used and must be thrown away.  This is something that is not only helpful to the community it is helpful to the planet. Basically, it performs a community service project for a large group of people.

The new update or addition to the program is a glass crusher which recycles glass from the garbage.  Whoo Hoo this is fun to watch.  It is a big machine that has pipes that goes to the ceiling and ventilates any dust out of the large work space.  This machine crushes and deposits the glass into big bins.  When you feel the glass there aren’t any sharp edges.  The program is looking to different ways to help this program fund itself.  Some of the uses for the crushed glass are as material used for sand blasting as there are different degrees of the end product or “grit”.  Some of the glass is powder fine and some of it is the size of small glass beads.  Then there are some coarser pieces.  These bins sparkle with the crushed glass.   They are even using the end product for landscaping.  It is pretty to see…some of the glass is as fine as powdery sand on the beach…others sparkle along sidewalks and such.

The colors are fantastic.  They range from a clear color, to a light seafoam green to brown….there is some blue but for some reason there are not as many blue glass bottles and such made nowdays.  The prettiest to me was the bins where the colors were mixed together.  I imagined the crush glass to be used in art projects and in floral arrangements at the bottom of the vases.  Maybe used in making decorative patio blocks or cement pads.  In fact, I am thinking next summer of making a patio area around our firepit with cement and adding in the crushed glass in the surface to add a bit of style and color.

The sad part of the program to me is that there is so little funding.  The kids work with regular tools…these are not designed for commercial or heavy duty use; which is the workout that those tools get.  It is costly to keep replacing these tools.  What would be fantastic would be to have a tool company supply them with commercial grade tools.   Noone really knows of what this programs needs are in the community. These kind of programs don’t get the attention that they deserve or need.   I wish I was independently wealthy and could fund the areas that they need financial help with.  The student could be learning skills that they could use in the future to help them earn a living once they are too old for the program.  That is IMPORTANT for their personal success.

How could this program find ways to fund itself with these assets?  That is the question.  In the front of the “shop” they could set up a retail area….if only they could come up with some ideas.  Do you have any ideas?  Do you support your schools programs for your communities special needs students?

       This local program is in danger of being phased out.  A new person took over and therefore did not have all of the contacts that the previous person had.  However, in the last couple of weeks of this summer’s program things picked up.  The students get booked by an organizer and they go to local businesses or homes at an appointed time and they steam clean.  They were excited when they arrived and they were diligent in doing their jobs.  There was a team of 2-3 students and a couple of adult supervisors.  This worked out wonderfully.  Was the carpet cleaning equal to a professional cleaning?  No, however they didn’t charge a professional price either.  I felt that the service they performed was worthy of being a paid job.  They used regular upright steam cleaners that anyone could buy and cleaning solution that you could buy in a box store; but in general the results were clean and fresh.

         It was awesome to see pride on their faces when thanked for performing the carpet cleaning service.  They had a passion for doing their “job” right.  They appeared to feel happy to have a purpose.  In fact, the teacher told me that she was concerned about how they would feel for the rest of the summer when they didn’t have a job to get up for; she said there were some students who would get filled with anxiety when there were no “jobs”.

         I would love to see more programs developed for special needs individuals…both those who are in school and those who are older.  Everyone has abilities, skills and knowledge…why not harness the best opportunities that will enrich the lives of a special needs person?   Do you know of any programs that exist in cities or rural areas that build up the life of a person who was born with challenges?  Tell us about it please.

       That is why i love the book called, The Friendship Puzzle.  The children’s book is all about helping children to learn about the importance of accepting and including kids who are living with autism.   It talks about differences and how friendships are formed once we understand each other.  We have to learn to look beyond the surface of who a person appears to be different from ourselves; to see the real them.  Then, we must find ways to include each other in our daily lives for a chance to become friends.    Sometimes it is easy to misunderstand another person’s actions when we don’t understand why they do or say certain things; or, behave in a different way. 

       The Friendship Puzzle was written by Julie L. Coe and illustrated by Sondra l. Brassel.  The book was inspired by Jennifer Maloni  who’s children Dominic and Dylan are living with autism.  The boys experienced a similar real life experience that was sad and disappointing.  That experience is used in this book to make a difference in how we view people with disabilities.   You can learn more about the book and where to purchase it here:  http://www.friendshippuzzle.com/  This is not an affiliate link… it is just a book that I happen to adore. 

        That message, of accepting and including one another, is very profound.  We can all apply that message in multiple ways to better the relationships we have with others without regard to abilities or disabilities; it is something that we can all improve on.  This book and a recent news piece on an amusement park for those who are disabled reminded me of how often people neglect to include those who are different from ourselves in the things we enjoy; simply out of ignorance of how to do it.

        The amusement park I read about is called Morgans Wonderland and it is in San Antonio, Texas.  It was built by a father after a failed attempt by his daughter Morgan to interact in play with other children due to her disabilities and the lack of clear communication between the children alongside of a pool.  The other children were playing with a beach ball and she wanted to play too…but lack of communication and understanding prevented continued play.  This kind of situation can be heartbreaking…but in this case it was the catalyst he needed to dream of a place where special needs people and their families and caregivers could come and be included in all of the activities. 

        Gordon Hartman was the father and he has achieved his dream.  Morgans Wonderland is a 25 acre park that lets the special need individual be themselves and experience the joy of an amusement park just like anyone else.  They utilize volunteers at their park and they encourage families to come and enjoy their time together.  I love the idea behind this park.   If you are interested in learning more about Morgan’s Wonderland and all it has to offer…please click here: http://www.morganswonderland.com/morgans-wonderland-tell-us-about-inclusion.asp  Again, this is not an affiliate link…it is just a place where a family can go to relax and have a positive family experience with their special needs loved one. 

        I just want to thank the Gordon Hartman’s and the Julie Coe’s of this world who realize the importance of acceptance and inclusion. 

That is a difficulty for some parents; some social situations are difficult.  Depending on the young person’s abilities the options are open to whatever decision the parents and the young person see as being a possibility.  Take advantage of every opportunity that you can to widen their circle of interaction.  You never know where that may lead regarding contacts, volunteer situations, or even eventual employment that they may find fulfilling.

In this time of financial cutbacks and downsizings, finding funding for either additional schooling when possible; or, for a place of employment to take on a person with special needs is becoming harder to find.    Employers have had to cut back on the number of employees and hiring a special needs person may not fit their needs.   For those who are in a rural setting, it is even more difficult.   There are less employment situations.  Check with your friends, your co-workers, even with members of a church or an organization that you may belong to.   Some counties have specially trained job coaches available to work with a special needs individual to find a job that fits them and their abilities.

Finding an agency or organization that is versed in this area of help is beneficial, if you can find one.    In the meantime, dealing with the young person’s expectations of instantly getting a job can be very discouraging.  Filling up the day with activities and opportunities that keep them engaged and being productive is important.

Don’t fall into the trap of allowing them to sit in front of the television, computer or computerized gaming systems just to occupy them.  Let them dream of something bigger and better, help them to achieve what is their highest level of functioning.   It may be unchartered territory…but it doesn’t mean you have to stay adrift on the ocean with no goals or plans in site.  Their quality of life is greatly improved when goals are set and met; the individual has expectations of how life should be, help them achieve their personal best.

I really debated whether or not to write this article. I came to the conclusion that the subject matter matters enough – to put myself on the line.

I truly believe that much of the evil of the world continues because so many people do nothing. It’s not that they necessarily endorse the acts of evil but they turn a blind eye…which really leaves but one assumption: they are a part of the problem because they are not a part of the solution.

I refuse to be one of those people.

I’m only one tiny little voice. I understand that. I can’t change the world. I try and I fail. Day after day. But I continue to try and I refuse to give up.

My husband and I moved to a tiny little town just over a year ago. A few months ago I joined the town charity group. We help children and seniors – to pay their winter bills, buy coats for the needy kids, host fundraisers, etc. Tonight was our monthly meeting. We met at the home of one of our members – stunning home with an incredible hand crafted deck, cabinets and more. I arrived and looked around, in awe. I don’t have anything like this and I’m absolutely okay with that. I know what I have and it means the world to me: a soul mate for a husband and three fantastic mini humans. This thought ran through my mind…”My family means everything to me.” So much more than any beautiful home or any material thing. I am always happy for others when they have beautiful things – I feel glad for them. I smiled to myself and sat down for the meeting – with a heart full of gratitude for the people in my life that I am blessed to call FAMILY.

The woman running the meeting is a spectacular person. If the truth be told, my husband and I would both agree that she is our favorite town member of all. From the moment we moved here and met her we both said, “She is the one. She is the one with the heart – kind, caring, loving, selfless.” She gives of her time and money (what little she has) day after day – to help others who have less than her. She is poor by the world’s standards but if you showed up at her doorstep, hungry, she would feed you. She would clothe you. She would give you shelter and warmth.

At the end of the meeting she said, “Okay. Go around the table and tell us your New Year’s resolutions.”

We began to state our resolutions one by one. When it came to my turn I said, “I don’t like to say what I am going to stop. I like to say what I plan to continue. I plan to continue loving my family, caring about the environment, promoting life and doing what I can to make a difference.” The man sitting across from me said loudly, “I am pro life, too, but if the baby is sick, abort it. If it’s sick – why have it? Just abort and be done with it.”

My heart stopped beating for about 10 seconds, I think.

My son has a special need. He was born with numerous medical complications and I spent a full 2 years in and out of doctor’s offices, addressing his needs. Blood filled my veins quickly and my hands began to shake. I just starred at him for a moment and then looked away, dumbfounded.

The final person shared their resolution and the meeting came to an end. The woman in charge of the meeting (the one I mentioned earlier) began to talk with me and another woman about braces. Mine have finally come off and they were pointing that out, asking if I was happy about it, etc. This woman (the one we love so much) had gotten braces after having cleft palate surgery. She explained that this had left her mouth a little funky and wanted to know if I’d had the same experience with my braces.

I have always wondered what her story was. I knew she had a story. A deep story. A human soul does not become so caring and so loving without a story.

I looked at her with intensity and said, “You have a cleft palate? Did you have surgery?” She answered, “Yes, I did.”

I walked over to her, looked her in the eyes and asked, “How do you feel when someone says what he just said? That a baby with medical issues should be aborted? How does that make you feel?”

Her eyes welled up with tears and so did mine. She replied, “I believe I have value, Shara. I think I add value to this world. You know?”

I put my arms around her and hugged her tightly. “Yes. Of course I do.”

She went on to tell me that she had been born with a cleft palate and that she’d had Scarlet Fever at the age of 5. That’s why she is now deaf. She wears a hearing aid and has trouble talking. Her parents did not get medical help for her as a child. She had to pay for her own surgery at the age of 21.

That’s right. 21.

She was tortured and ridiculed and picked on during her entire childhood.

I told her that I was angry at this man for his ignorant statement. And do you know what she said to me?

She said, “Shara. I have learned that you can’t always judge people because of what they believe. Sometimes they simply don’t know any better. He has never had a child or a grandchild with a special need. He doesn’t get it. If my parents had aborted me…he doesn’t understand that…” Her eyes filled with tears again.

I finished her thought. I whispered, “He doesn’t understand that people like you teach people like him. That a person like you has something to teach others.”

“Exactly.” she answered. “People like him do not realize that people like me add value to the world. That I have something to teach that can benefit others. He doesn’t see it.”

She placed her hand over her heart and continued on: “God doesn’t reveal everything to us all at once. He teaches us in stages. It’s a growing process. We need to have mercy on him.”

I stood there, eyes wet with tears, in complete shock. She had just been told by someone that her life added no value to this world yet she was instructing me to be merciful to him. To the very person who saw her life as meaningless and disposable.

The words of Scripture ran through my head like a force of nature: “Father, forgive them, for they know not what they do.” (Luke 23:34) and “Love your enemies and pray for those who persecute you.” (Matthew 5:44)

I pictured Jesus walking through town, talking to people and instructing them to have mercy on one another. To love and to forgive. Putting his arms around those who didn’t understand and kindly explaining to them…another way to view things. No name calling. No hate. No disgust. Just mercy.

As I looked into her eyes tonight I saw the face of Jesus and I heard His very words being spoken through her. I could no longer hate this man or despise him on her behalf. I had no right. I decided that my best option was to share this story with others in the hopes of giving another viewpoint on those with special needs.

They do add value to our world. They do matter. It’s my prayer that some day…we will all come to see that. Some way. Some how. It’s also my prayer that we will each be more mindful of how we speak and of the words we use. Words have the power to cut and they have the power to heal.

Let’s be people who use healing words. I choose to be someone who uses healing words and I invite you to join me.

I wish to thank Shara Lawrence-Weiss for guest blogging for me on this subject.  She shared this story and I found it compelling and asked her to share it with my readers.  I want to thank the woman who exhibited the compassion and understanding of Jesus towards the man who did not understand how much that he devalues people who are born with challenges.   There but for the grace of God go any of us.  Every life has value.

Shara is an amazing woman and writer.  She is filled with compassion for those who share the planet with her.  She does many great and wonderful things, with no desire for glory for herself, but one of the best things that she does is write stories that share a  child’s personal story.   Every one of us has a  life story and we can learn from one another.   You can learn more about her wonderful work here:  http://www.personalchildstories.com/  Check her out…surely you know a child who deserves a book all about themselves!  Be blessed.