A friends recent experience with her adult special needs son’s hospitalization has made me realize just how important it is to have a family member serve as a patient advocate in the room 24/7. Hospitals are busy places and it is easy to get lost in the hustle and bustle of meeting patients needs. Doctors are coming and going, technicians are running tests, lab workers must draw blood, nurses are administering medications and all of this busy work needs someone to co-ordinate and share information with staff and family members. If your special needs loved one has problems understanding or communicating…this can be a problem.
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?
This is the second part of a guest blog post by my friend Connie Baum where she shares a very personal journey that her family has taken as a family with not one but two special needs sons. To read part one click here: http://www.growingupspecial.com/special-needs-finding-a-place-of-love-acceptance-part-1/
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?
If you would like to learn more about Connie you can check out her Health And Wealthy site
Written by Shara Lawrence-Weiss, owner of Mommy Perks and Personal Child Stories
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.
Today’s post is a guest post by Connie Baum. She is the author of : http://thehealthyandwealthyyou.com/blog/. Connie knows of what she speaks regarding caring for loved ones with special needs. Please read…this comes from her heart.
Toastmasters International stresses to their membership the importance of preparing each speech. It is important to think each project through, outline it carefully, craft it, and rehearse the presentation to perfection.
Preparing for our beloved special needs family members is even more critical; the quality of their very lives depends upon how carefully their family members have collectively thought out plans, outlined the needs, and decided together what would be the ideal scenario for the life of that special person in the family.
Everyone in town knew Marvin. He was a cheery, personable fellow with special needs and he lived with his parents until his elderly father passed away. For a decade or so Marvin told everyone he was the man of the house now and was taking care of Mother. When Mother died unexpectedly, Marvin was left alone, morose, and with no plan in place.
It was patently obvious Marvin had been well cared for and dearly loved. Close family members were seriously interested to help Marvin get on with his life after mourning his loss; but, they were unable to care for Marvin in their homes on a long term basis. When his mother was gone, he was lost and alone. After much confusion and a flurry of activity by family members and social service workers who intervened on Marvin’s behalf, Marvin was able to find a place to live with an agency well suited to meet his physical and social needs. They even found work for him in their sheltered workshop! Best of all, he could take a bus to his home church every Sunday morning! His value and worth was recognized and all his needs were being met.
Things for Marvin worked out swimmingly. Families who plan together for every eventuality, including burial and internment, can rest assured the needs of their special family member, whose needs are unique, will be properly met. It does take some open and frank discussion, contact with trusted attorneys and/or social workers to create a workable plan for the future for the “Marvins” of the world.
Implementing these plans can often be painful for family and clients alike. It can be reminiscent of the loss of death. It is the demise of the familiar, the comfortable. Conversely, it is entrance into a bright new world with exciting new opportunities, fresh new relationships and networks, as well as discovery of untapped skills and talents! There are transitions that are smooth sailing; other times the move into the new world is fraught with difficulty and adjustment comes more slowly.
Toastmasters members plan for successful speeches; loving families plan for successful lives-particularly where the lives of precious special needs people are their prime consideration.
Every family is made up of individuals with wants and needs. Every family is different. Add a person…take away a person; and, it changes the family dynamics. Add a need, or take away a need; and again…the whole composition of the family changes. This is to be expected in the life of every family.
Families that are created out of adoption have a multitude of blessings and challenges. The same can be said of families that have special needs children…whether they are born into the family or adopted. The term family falls under an umbrella of accomodations; each person’s wants and needs are accomodated into the family unit (or should be). Your place in the family is guaranteed out of love, acceptance, encouragement and the occasional nudging towards further personal growth. A healthy family is designed to be a personal support system.
My own family has both adopted children and special needs children. We have blessings and challenges like any other family. Those blessings and challenges aren’t JUST related to being a family created from adoption, or of special needs; it is sometimes a mixture of both.
I grew up in a large family and my husband did as well. We are used to understanding that each person is unique. Each person is an individual, as well as, part of a family unit. Often in my sibling group we had wants and needs that conflicted with one another…my husband’s family as well. We had to work out any differences between family member’s expectations. My husband’s family was impacted by some special needs, my family was not. Neither of our families were impacted by adoption. And yet, because we came from large families…some would consider our families to be special needs just because of the number of children. Each person in a family impacts another; that is typical of any family that consists of more than one person. There is no such thing as a “normal” family!
We are blessed with creative thinkers, business minded or logical thinkers, nurturers, artistic individuals, readers, non-readers, free thinkers, outgoing personalities, highly verbal personalities (how come i didn’t get any quiet personality childen?) LOL, musical, non-musical, conformists and non-conformists, high IQ-low IQ, flexible and non-flexible personalities; you get the idea. We are a creative mix of likes and dislikes. It is a balancing act at times trying to meet everyone’s needs. But, it is done because we want to; we desire to recognize each person’s requirements to be successful, to be healthy and happy.
Each family has a story; it has a beginning, a middle and an end. Everyday we are writing new pages to add to the story. Those stories are of interest to others because we can learn from one another. We can share in the laughter, the confusion, the joy, the sorrow, the sense of betrayal or anger that fills a family with a lifetime of experiences. The stories of your family can mingle with other family stories to create a sense of encouragement,failure, discouragement, success, education, or compassion. Experiences can draw people together or set them apart.
Isolation is sometimes a part of family life when you are raising adopted children or special needs children; just because of the lack of understanding; or, perceived lack of understanding, of those in your social circles or community. It is very important to find support in those times of feeling isolated by behavior difficulties or by circumstances.
We must learn to live in the moment…not be defined by labels or expectations. Each day, each moment is open to interpetation. We can stop, we can reread, we can change directions and we can grow and learn. Sometimes people get a label and try to skip all of the chapters in between the beginning and the end…they just want to go to the end of the book and see how the story turns out. It is in the daily living…getting the most out of each and every moment that we are given to live, that we find fulfillment and joy.
So, what’s your family’s story? How was your family created? Is your family life the way you expected it to be? If yes, why? If not why? What would you change if you could? Can you change it? Can you change how you think about it? What impact does your family have on each other; what impact does your family have on others around you? What does family mean to you? What do you love about your family?