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?
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?
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.
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
The Care and Feeding of Guy Foster—Part One
The care and feeding of any family of kids is an important undertaking. Every growing body needs lots of whole foods; good pure water; adequate exercise and sleep. Every body requires large amounts of hugs and laughter to mature properly. That’s what people have in common with one another.
I have had a lifelong interest in food, nutrition and all things pertaining to health so it was natural for me to gravitate toward healthy choices as I prepared meals for my growing family.
When we welcomed a certain charming three year old with multiple health issues into our family, it became all the more imperative to pay attention to what we all ate and drank and how we managed the care of our health.
The new kid on our block, Guy Foster, had four caretakers in three months before his arrival. Prior to that, he had lived in two hospitals and he endured multiple orthopedic, exploratory, corrective and brain surgical procedures. To be honest, Guy was an adorable, busy blob of humanity whose needs were monumental.
The most pressing issue was a shunt that keeps spinal fluid from collecting in his skull. There were many other challenges, too, but the most persistent was the dreadful odor that surrounded Guy’s body. No amount of scrubbing, no brand of soap, and no sort of deodorant offered any relief. It was a major concern.
Guy’s health had its ups and downs. When Guy was 29 he underwent a surgery that had a bad outcome. That’s when it was decided he should live in a nursing home. Only those who have gone through that process can appreciate the pain of that time in our lives.
During Guy’s tenure in the nursing home we discovered a new kind of water. It had more minerals and oxygen so we thought it would be good to get Guy to drink that. He even had a spray bottle for topical use.
We also acquired a magnetic mattress and pillow, along with a Far Infra Red comforter for the hospital bed on which he languished most of his days AND nights. We slipped magnetic insoles into his shoes, much to the chagrin of his orthotics and prosthetics specialists. They just did not fathom the concept.
The dietary people were unhappy, too. They did not appreciate or value the purpose behind the juice or “green stuff”-barley grass-we provided to accompany Guy’s meals and the nursing staff complained bitterly, loudly, and often that the whole foods supplements we brought for Guy had not been sanctioned nor labeled by the pharmacy department.
As time passed, we opted not to use any medications in Guy’s treatment. The medical staff at the nursing home became ENRAGED over that decision but as Guy’s legal guardian I had the right to make that choice. It was in Guy’s best interest, after all.
Over time, the toxicity of the medications eventually left Guy’s battered body, leaving him more alert, more active. The many surgical scars that covered much of his body had faded into oblivion. Best of all, even his breath was sweet! He was no longer plagued by the issue of odor!
Thank You Connie for your guest blog post!