A human figure emerging from the darkness, I only witness because the light from my headlights caught the edge of his profile against the dark woods. He was carrying something and I thought it might be a sleeping bag. As quickly as he caught my eye, he disappeared in my rearview mirror against the blackness of the night. It all happened so fast, the thoughts in my head, of a man in the darkness, who probably slept outside in the most brutal winter I can recall. I thought about what I could do, without getting too close or invading the man’s privacy. I did not want to appear disrespectful in any way. Maybe he lived with some form of mental illness, perhaps schizophrenia or bipolar. I felt badly for his situation. I thought he is someone’s father perhaps, and a son, and maybe even a brother. No matter what people think, most likely his family has tried everything they can do to help him. If in fact , he lives with a serious illness of the mind, I can almost be certain that his family has tried everything they can to help him. It is a sad situation that our society has so many living on the fringe. It is also hard to see people endure these difficult circumstances.
He was in a business area of town on a wooded road lined with Walmart , Lowes Home Improvement , Texas Steakhouse, and so many other large franchises. He didn’t fit into the hustle and bustle of shoppers so he traveled at night, I assumed. After I left one of the stores, I glanced around for him, but he was gone into the night.
Then a few days later I saw him again, only in early morning hours within the same vicinity only closer to homes rather than businesses. The rush hour traffic just passed by this man on the edge of the road, colorless, all brown with his blankets and his clothes as I saw him turn around and stare momentarily. I noticed he blended in with the bare trees. It hit me with sadness that he blended in. I am glad I noticed him not once but twice, and I wish there was something I could do. He is someone’s son.
Wishing for a cure? If you are like me, I wished many years for a cure for my son’s physical disability. I think I spent many years campaigning, and fundraising trying my best to do my part in finding a Cure. Our family watched as our son lost his ability to walk at age ten, and sixteen years later, he needs help with everything from bathing, dressing, feeding, and transporting. In fact, he is brilliant and operates an electric wheelchair with the use of one finger, and also is ventilator dependent. He can wiggle his toes, but can no longer lift his arms or feet, or even turn over in bed. So, please forgive me if my views have changed over the years. You may be surprised to hear what I have to say, because it is not negative.
There are no words as magical as the word, hope, or the word, love. These words are tied to our emotions. If you witness an opposing view regarding Finding a Cure, you may take it very personal. I know this because I heard someone say, “Why do we need a cure?” when my son was very young. I was shocked he felt this way, but he was living with his disability for his whole life. I took it very personal, and I even became angry for a bit, though he was not directing it towards our family in any way. He was speaking from his own experiences. This is what we all do.
It is my opinion, that there is a great deal of money to be made selling Hope. The fundraising is infinite. The head of the American Red Cross quit after 9/11 partly because money poured in from across the globe at such a rapid rate, that our country was not prepared for any disaster of that magnitude.
My belief is that the Cure is very far from our reach. We are mortal. We have to wonder at what expense will a Cure be found? Since my son was a little boy, the Cure was predicted to be a few years away. That was 22 years ago. Scientists are trying many avenues to find these cures. The quality of life has advanced several years, and that, I believe is most important. This is due to funding, research and development. Families are talking about a new revelation called Exon skipping. It has to do with genetic deletions and knowing your son’s exact deletion. I think it is amazing research but I have to wonder if this is just another way of selling Hope. Then again, scientists have created vaccines which stopped smallpox, tuberculosis, and polio. They couldn’t cure those who were already affected by those illnesses. Families discuss research trials, and many seem to have a sense of desperation with their newly diagnosed child. The clock is ticking. I understand, because I was there once. Reading as much as I could about the research, gave me lots of Hope. It gave me control over something for which I had no control. My thoughts are that Hope should be coming from within, not from outside. I am just posing a different viewpoint from someone whose son is much older. He is comfortable in his own skin, but it took many years.
It also took me many years to accept all that came our way. We fought to get doctors to listen to us and continue to do so. However, it was not until the past few years, that I came to terms with my own feelings. I was in church one day, which was a rare occasion as I seldom attend church. I was in church because another son was a member, so I joined him. Forgiveness was the topic of the sermon. I was talking with a woman next to me who started to cry and said she needed to forgive the doctor for a bad surgical procedure which diminished the quality of her life. She was broken up, so I reached over to hold her hand. Little did I know, I would be overcome with such deep feelings. I confessed to her that I believed that my son was perfect, just the way he was supposed to be, wheelchair and all. I told her how I had forgiven him for his disability. I had no idea, I had been carrying this pain, and I hope my son was never burdened with my feelings. I would never mean to cause him pain in any way. I was ashamed I had felt this way because my son had done nothing wrong that I should feel this way, however those intense personal feelings were not evident until I was listening to the sermon. In the beginning, I feared terrible things happening to him, and it was revealed to me by a counselor that I saw our family as victims. That made sense to me, though I had not thought of that. So I found through the years that I have grown in ways to overcome all those feelings.
The last year or so, my other son was diagnosed with mental illness. I also think he is perfect the way he is meant to be, but I am concerned he does not self destruct in front of me. I have checked on his medications, hoping he stays compliant, for his own safety and well being. I have never heard of an organization selling for a cure for Bi Polar or Depression. I know there is an Alzheimer’s Organization, which raises money in the fight against Alzheimer’s. It is a fight, not a cure.
Money is raised for cancer, breast cancer, and mostly physical conditions. Exactly what would a cure look like? How will we achieve these cures? With technology, we are able to watch the baby develop in the womb. We are coerced into having numerous tests, for what? My doctor wanted to administer a test on me when I was pregnant, to see how the baby’s brain was developing…for what? I refused this test but it did not stop them from pestering me. So if the brain wasn’t developing correctly, what then? It is a miracle to be born “perfect”, but who could ever predict a child’s future? We have no guarantees. Life is now, so must live each day to our fullest. All the available testing could never predict what could be wrong with your child. When we use terms like “eliminate” to describe a disease… well what does that look like? I have already heard of people not being covered by insurance if they are carriers of defective genes. Who decides what perfection should look like; Insurance companies, the government, doctors? Do we reject everything less than perfection? It is subtle. On a trip to the grocery store, I notice that the tomatoes on a vine all appear exactly alike. I know these comparisons have nothing to do with one another, but we need to ask where we are going with all this eliminating illness and disease. Nobody wants to see anyone suffer, but are we so uncomfortable that we can’t bear to have differences within our society? At some point in our lives, we will all have great physical and mental/ cognitive challenges.
Lastly, I ask you to think about mental illness for a few moments. Are we going to eliminate this as well? Disability, either physical, or cognitive, or mental, all impair a person’s life significantly. One boy was an athlete, very social, popular with many friends. There were severe changes out of character for him, which caused concern. His judgment was very bad at times, resulting in risky behavior. He was suspended in time, not concerned with goals. Motivation was lacking and the pursuit of passions came to a screeching halt. He hopped from job to job, some jobs lasting only a week. Each day he was going to do something different, changing his mind in a moment’s notice. Racing thoughts became the norm. Isolation became his way of life, even isolating himself from his family, with whom he lived. If you can imagine, the concern was great. Hospitalization and non adherence to medicine became the norm. The unpredictable was becoming predictable. So I ask you to consider, how can we find a cure for someone like this young man? We can make plans, but things change. Life is not perfect.
In life, we are always facing obstacles, either an accident, an illness, or onset of dementia. Cures can be sold to anyone willing to buy some Hope. Hope is the last thing we are willing to let go, because the will to survive is very strong. In the end, finding a cure is a matter of the heart. Some of us are happy with a better quality of life, so we won’t spend our lives wishing for the fairy tale of a Cure to land on our doorstep. In the end, I mean no disrespect to those working for a cure, because it is your turn to go to bat. Like those who did the same before you, it will mean a better quality of life for our families. Sometimes we lose our hope when our loved ones are ill. Our dreams are lost. But it is within ourselves that we find peace again. Emotions range from grief to anger, back and forth like a rollercoaster. In the meantime, acceptance did not come easy, but when it did, peace soon followed.
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All weekend I have been thinking about Shiloh’s parents. She recently passed away at the tender age of ten. She was one of only three known worldwide who lived with sirenomelia, commonly referred to as mermaid syndrome. She was a true spirit, full of life and determination. As a parent of a child with a disability, I have learned a few things. Some things in life may seem unfair, but life was never fair. I also had a cousin with severe limitations and when she passed, I grieved over what she had been through in her life, but I was grateful that she was part of our lives, in the sixties; a time before inclusion. In my experience, I believe most parents who have children with disabilities sometimes experience chronic sorrow because their children will lead dramatically different lives than their peers. It seems much of the child’s energy, is sometimes spent making others comfortable with them. Parents also feel compelled to have their children accepted by their peers as well as adults. There were times, I had to step back and not put those burdens on my shoulders because I needed to save my strength just to be a mom. I also wanted my son to see that I was dealing with things the best way I knew. When parents finally stop fighting the disability and gain acceptance, then the children gain self acceptance, which is most important. Disabled kids teach their parents just how strong they are as human beings. The strength of the human spirit is remarkable. Inside each and every one of us is that need to live our lives. Sometimes we are not tested early on, like children with illness and disability, until we are older. Then we find that we have great strength when we need it. We will experience denial, fear, anger and sadness but that will take the back burner to acceptance and happiness in the life that we have today. Our children do not want to be made to feel they are a burden, or they are special, or they are fragile. They want people to talk to them not at them. My experience as a mother is not that different from any other mother. I want my children to accept themselves and be the best they can be. My experiences have been intense at times. It was not always easy trying to juggle meeting the needs of my able-bodied son as I was care-giving for my other son. There were times when I had nightmares over my inability to do both. For the most part, I believe I am a better person for having the experiences I have had as a mother. It may be difficult to believe but I would never trade the experience of raising a child with a disability. Of course, in my heart it has been difficult to watch my son experience his losses. It has been difficult for our whole family, especially my youngest son who watched his brother gradually stop walking and lose abilities. They have a very tight bond, which is just what a mother wants with her kids. When I think of all the people I have met whose children have been sick or living with disability during our many hospital stays and also families I have known with disabled children, I am humbled to be part of this circle of friends. I have several memories of parents who have lost their children and they still reach out to me in my time of need or they are there to offer me their wisdom. So today, as I think of Shiloh’s family, I am sure they feel very blessed to have had such a beautiful daughter and I am willing to bet they too would not have traded their experience as parents to such a determined young girl. This story is dedicated to the strength of the human spirit, the love we have for life, and the courage to carry on with the burdens that we all sometimes carry. To LIfe!
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I have been away emotionally the past couple of weeks. Now I am feeling better. While I have been very busy with workouts three times per week with a personal trainer, it does not come easy to carve out time for myself. This is going to be the year I vow to commit to myself to be in better health. I am fortunate I have this option because many do not, through no fault of their own. My oldest son, for example, despite the muscular dystrophy he lives with day to day, is otherwise healthy in comparison to others we know who are affected with muscular dystrophy. Recently, he was with my other son and they were in NH when I received a call around dinnertime. My youngest son asked what medicines his brother took each day. Immediately, though he remained very calm, I realized something was wrong. He had called an ambulance for his brother because he was having difficulty breathing, This happened before and he passed out because neuromuscular patients cannot expel enough air from their lungs causing CO2 to remain in their lungs which makes them sleepy, enough to pass out. Both occurrences, my sons were together and my youngest son handled the situations with grace and courage. By the way, oxygen is like poison to these people as well because it causes the same phenomenon. My youngest son was very upset because the emergency room staff would not listen to him and use the inexsuffolater (cough assist machine) to retrieve mucus from his brother’s lungs and instead performed invasive treatment which was a ventilator (intubation). This does not allow the person to communicate. I went home and was planning to go to Portsmouth Regional Hospital, when the doctor called me to say my youngest son had requested transport to MMC for his brother. Immediately, I called his doctor here to explain the situation and replied that I wanted him off the ventilator immediately knowing that neuromuscular patients can become forever dependent upon the ventilator. I called my mom and she joined me at the hospital for my son’s arrival a short time after midnight. I spent the night there in the special care waiting room and told the nurse to let him know I was there. My son was angry he had been ventilated. There was fire shooting from his eyes. With his eye movements, my husband & I figured he wanted the bed sitting higher and wanted to have spit suctioned from his mouth caused from intubation. He was on intravenous, antibiotics and was catheterized. I brought my cough assist machine from home at the doctor’s advice in the event there was a shortage of that type of equipment. The respiratory therapist was able to get a machine for his room allowing me to take mine home. I fixed the settings like ours from home as I talked with the respiratory therapist. My family is all trained on the use of the machine. The following morning, my son was taken off the ventilator and there was talk of getting him a Bipap machine for evening use to facilitate with breathing. We knew it was time from the results of his last sleep study but ultimately it would be his decision when to get the equipment. Because of this incident, the choice was made for him. It is always bittersweet when a new piece of equipment comes home because something is lost… and something is gained. As soon as tubes were taken from his throat, we used his cough assist machine a few times to clear his lungs. That evening my husband would stay the night. I arrived the next morning around 10:30AM to see oxygen tubes in my son’s nose and he did not look good. My husband wasn’t aware of oxygen danger but I was because of a friend whose son nearly died from being given oxygen. I realized I had not shared that info with my husband. The nurse came in and I asked about it. She said his oxygen saturation levels were falling. My son could not keep his eyes open. I told her that the oxygen tubes would be coming out and she advised me to consult with the doctor. As soon as she left the room, I took them out of his nose and started with his cough assist machine. I took out a lot of mucus and he seemed to be responding. The machine on the wall kept beeping because the oxygen levels were low but I kept working with the cough assist. I put ithe oxygen tube back in fhis nostrils for a short while and then repeated the procedure. After almost two hours of using the cough assist machine, he was alert, and responded by having his oxygen saturations at 100 percent. He then maintained those oxygen levels. The nurses were astounded, but it did not take a rocket scientist. From what I have researched, most medical personnel are not trained on the non invasive approach to pulmonary care, much less even aware of how it works. There are some medical personnel who know. There is also no protocol for the standard of care for these patients. Achieving optimum health can even be as simple as which masks the patient uses. For my son, we chose to use nasal pillows for his Bipap, as using a full face mask can also cause complications with weight loss due to distension of the stomach as it receives too much air. There is so much to learn beginning with me and also the medical personnel. I have learned two things over the years. Whatever ‘sentence’ the doctors give you… take it lightly as everyone responds differently and most importantly LIVE your life. They only know from some of their experiences and most likely schooling. We are the ones who live with our loved one’s diagnoses. We have learned to achieve emotional health as well. Don’t let them take away any hope you have to keep you going. The next most important thing I have learned is that I will not accept NO for an answer in my care or anyone else’s care in my family. Many times, you will be butting heads with medical personnel, but remember, you don’t have to take those folks back home with you. I must say that I was most impressed with the people at the hospital, especially the Special Care Unit.
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Seldom do I get sick but I have been treated for asthma complications twice in the past month. Both incidents involved having a cold first. I was put on prednisone and later antibiotics. I am still not 100% but getting there. Thankfully, my ten day vacation starts on Friday. I am not the only one who has been under the weather. My husband, youngest son and my oldest son are fighting colds. My oldest son, Michael, needs extra attention to prevent him contracting pneumonia. I frequently use a cough assist on him, sometimes in the night. If you are not familiar with this machine, it is a marvel. It should be a marvel as the cost is equivalent to a car. However, we all know there is nothing worth more than good health. We will do anything to have good health. A cough assist is a machine used on a patient who is unable to cough mucus unassisted from their lungs. It can be compared to the iron lung of yesterday. Today’s cough assist is a small machine, which is portable and has gauges and dials on the front. When it is plugged in, it makes a loud sound like a respirator. It can be a little frightening. There is a long flexible hose that attaches to a face mask and that is attached to the machine. On the gauge is a needle that needs to be completely verticle when the mask is pushed tightly against the mouth and nose. I help Mike with this and I gently hold the back of his neck when I do it. The needle moves to the far right when he inhales and to the far left when he exhales. We continue this five or 6 times and then he coughs on the 6th time. When he coughs, the air which has entered his lungs forces the mucus to come out of his mouth. Then we repeat this about 6 times. It expands his lungs and keeps him healthier. Michael called me at work the other day, having some distress with his coughing. I called my youngest son JT who was 5 miles away at his job. He was able to get to the house and help Mike with a treatment. Mike instructed his brother how to use the machine. The following day, I asked my mom to visit and try a treatment on him as well. She had never tried it, but was happy she learned to use it. I am very thankful to have a supportive family because I need it. I have been very aggressive in his treatment because I don’t want him to land in the hospital with pneumonia. This machine is also used for people with Cystic Fibrosis. The world today has seen much integration between man and machinery. Though I am thankful that Mike has all of this marvelous equipment, ultimately as he gets older, as his own guardian he will decide how much more intervention he wants. The complexities of the world are more than my own mind can handle at times. I have learned to accept many things. It did not come easy to me, almost like doing everything in slow motion with one hand tied behind my back. In the beginning, it was a struggle often to accept my own son’s condition and to see him lose his abilities slowly. I struggle with time management, working full time, being a full time caregiver and trying to meet my own needs as well as the needs of my family. I have had to learn to manage my anger and accept some of it. It is important to me that Mike accepts himself, so I had to also learn that. I would say I have learned the meaning of grace, courage, discipline and sacrifice. My son has been my teacher. It reminds me of a phone conversation with one of my sisters about acceptance. She told me that I have not accepted everything. I said she was correct. I accept things that cannot be helped but those that can be helped, cause me great distress and sometimes anger. Acceptance… I suppose my definition may seem very black and white, but it is my way of prioritizing what is important to me. Yes, I am far from perfect, but I do strive to be true to myself so that I may true to others.
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Times sure have changed since the invention of the personal computer. It took some time to get used to never using a pen, and crossing out and rewriting, but I finally embraced typing onto the computer. I used to write letter after letter and wait for the mailman to come every day to deliver replies to my letters. I wrote to relatives whom I had never met seeking genealogical information. All those replies are in a shoebox, invaluable now because all of those people are gone now. I have made many connections since those letters over the years and found ways to connect people across the world to information I received 25 or 30 years ago in the form of a handwritten letter. Imagine one English woman’s surprise when she had written that her great grandfather had a brother who came to America and nobody knew what happened to him. Since we had common ancestors, I went through my letters because the names were familiar. I found a letter written by a woman whose grandfather was that brother who had left for America. He had settled in Staten IslandNY. My letter from the Staten Island connection was written almost 30 years ago. The English woman had sent me an email with all her information. So I sent her copies of what I had. The only reason I ever received a letter from the Staten Island woman was that she had been vacationing in Boothbay, Maine when she read a copy of the Portland Sunday Telegram and found my query about the name Skerritt. Amazing connections we all make in our lives.
Connections include our childhood years, our teen years, and work friends, friends of circumstance, military friends and so on. We all have connections. I have many friends from grammar school whom I still contact. It could be once a year but we still seem very close. I know where most people went from my old neighborhood. I guess it is because I genuinely care about the people with whom I have had a common experience. Last night, I called my friend Cathy using the best invention ever, the telephone. I heard the ice cream truck in the background and we joked about the same old songs that truck plays to attract all the kids. “Do your ears hang low?” and “The Entertainer”. Can anyone name any other tunes? I am sure it would be comical to hear the ice cream truck play “Tequila” as it winds up and down the streets of your neighborhood. I would bet there would be more than kids chasing that truck; most likely a few adults as well. Anyway when we talk, we laugh more than talk. It is good for the soul.
Speaking about the old neighborhood, an old neighbor passed away a few days ago, Mr. Harry McKenna. I grew up next door to the family as a young kid. The McKenna family had 4 sons who I thought were pretty wild. My parents went to the service which was nice as they saw 2 of the sons. One son named David lives away and I have not seen him since I was a kid. I always had fond memories of them. I was just a kid but I still think about them from time to time. They were part of my childhood. It is funny to think of all those crushes I had when I was young, though not too many knew about it as I was shy. Come to find out, I liked a boy and he liked me but neither of us ever knew it. It is probably a good thing because now we have the memory. Growing up…so awkward and goofy.
Friends of circumstance are interesting as those connections help you to grow as a person. I became very involved in the disabled community because I am a parent. When I was a new parent, I was typical, reading everything about parenting as I watched my child progress. I was fascinated and adored this new addition to our life. I guess I was clueless in many ways also. At age fourI learned my son had a serious illness and I couldn’t function for some time. I never knew I could have such an interesting life and meet so many interesting people. I have aspired to more than I ever thought possible. Most of it is because I am a parent. As a parent, you strive to do right by your child and give them the tools to be independent and to be decent human beings. It is the most important job you will ever have, even more important than the one you get paid for each week. I would say that I am not afraid to help others because of what we have been through as a family. Some of my friends have lost their children and I have been to their funerals. They are the most giving people I know. They still help others when they have had significant loss. I need to stay connected to them because they have helped us on our journey with Mike. Though I wish my son could not have the struggles he has, he is most interesting because of all he has experienced. Tonight, I came home and he told me that one of his friends would not be going to camp this summer. They met several summers ago at camp as Jake was in a car accident and was paralyzed around the age of seven. Mike told me he had called Jake’s house where he lived with his dad as his mom had passed away. The father told Mike that Jake was in a nursing home since March. The reason was that he had pressure sores. Mike called his room but there was no answer. Mike was bothered by it and so was I. I am up several times each night turning him, so this won’t happen. Life is good when you can meet people like Jake.
I would say there is one common thread and that is that no matter who my friends are, we laugh often. I relayed a story this evening to a friend whose son passed away two years ago of MD. Imagine going to the Tweeter Center in Foxboro and there is suddenly a need for a handicapped bathroom. I was determined to find one that afforded my son some dignity. It was located where the VIP section is where the band members hang out. Once I found it, I had to remove a 5 foot tall plant away from the toilet while my son maneuvered his wheelchair beside the toilet. The toilet is lower than the chair and this immediately presents a challenge. I mustered up all the strength I never thought I had and picked him up to lower him onto the seat. He was frightened that I would hurt him. The funny part was when he asked how I was going to do this and that. I replied, “Let me think” It was a 45 minute ordeal but is turned out ok, though I felt as if I had ran the Boston Marathon. The call to my friend was full of laughter over that incident, which most likely only she would understand. For the rest of you, this may have been too much information. However after all, this was a story about connections.
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Advocacy….We all get a chance at it whether it be for our children who have physical or cognitive disabilities or whether we are advocating for our parents with Alzheimer’s or maybe we are advocating for the best medical care for our own illnesses, meaning ourselves. The main purpose for advocating is to educate others in our social circle about our loved one’s condition. Maybe your child is non verbal and you want their voice to be heard. There is a lot of emotion attached to the word advocacy especially when it is someone for whom you have deep concern. I believe it is sometimes an exhausting effort to educate the whole world. To be quite honest, I started out holding a burden that large because I was overwhelmed with my own son’s diagnosis. It is easy to get lost in the clouds, trying to navigate services for your child, and becoming educated yourself regarding ADA laws and Special Education laws. Most often there is no balance in your life for some time. In fact it is a major disruption in your life, affecting your marriage and sometimes your friendships. Balance was not in my life until just these past few years, and that is almost 16 years after my son’s diagnosis of Duchenne Muscular Dystrophy. In the early years, I thought that I would go to any expense to find a cure as I wanted my son to live a ‘normal’ life. Now as time has been on my side, I realize I was compensating out of fear for his and our future. We all want our kids to be healthy, however, that is just impractical. Look around us in nature, and see that not all things are perfect. I have found that the only perfect nature I see is at the grocery store when I see the genetically altered tomatoes. Is that what we want? Over the years, I have had some battles, but I learned early on that I could not pick every battle. It would take away from quality time from my family. I also think every battle is a distraction from what is really important. I have done things I never imagined for the best interests of my son’s education. Never once did I think he was entitled to a better education than his peers. If you fall under IDEA 504 plan or Special Education, you are entitled to a free appropriate education in the least restrictive environment, not more than any one else gets. Yes, it may cost more to provide this education, however that is the law. If your child is gifted and talented, he does not get more than the others, but he can get more appropriately designed work tailored to his individual needs, all within the same classroom shared by the Special Education kids. Teachers have a great deal of challenges and they work hard to meet those needs. Parents should not be their greatest challenge. This is not to say that school districts are sometimes non compliant. Some may wonder if this is the way to go with education. My own opinion is, yes, that it is worth the effort. Children today are exposed to many with different abilities. It was painful for me to watch my son’s abilities change as he went from appearing normal, to walking with an extreme overcompensation in his gait for fear of falling. For two years, he was the target of being pushed down, pushed on the stairs, and sometimes by younger kids. This was very emotional for us, but we did not want him ever to feel badly about his disability. It was after all not his fault. If we overreacted, we could also embarrass him so we had to walk a fine line. I chose to educate and brainstormed with our principal about how to educate the students without singling out my son. The result was an assembly in which I talked about many abilities and led the students into an interactive question and answer discussion. In the end, recesses were changed, to avoid the kids who targeted him, and my son was allowed to change class a minute or two earlier, so he could travel the hallway safely and independently. This was the plan in place until his abilities changed and he went to a wheelchair. The parents do not totally decide what their child needs in the classroom as it is a team that makes those decisions together. After all, we can’t always have it our way. These things I have learned over the years. I have fought a few battles I felt important, but I certainly have not wasted all my energy on every battle. I need that energy to care for my own needs and the needs of my son. My interest in writing this particular story came when I read an article in the Lakes Region Weekly about parents of a five year old with autism. (March, 28, 2008) I mean no disrespect towards this family however I am left to wonder how they will advocate as long as necessary for their son when they are already so dissatisfied with their son’s services in kindergarten as he is only five. I can probably relate to some of their frustrations dealing with the school districts. I know they must be very good parents also because they are trying to see that their son is not overlooked. I also know that many kids who are developmentally delayed receive excellent support and services under CDS (Child Development Services) from birth until age five. As soon as school starts, they are no longer eligible. This is very scary for parents trying to advocate for their kids in the public school system. Many have heard about the horrors of the public school. There is a vast difference in the services provided by CDS and the public school. They must be very worried for their son all day at school. If their kids could communicate, it would be a very different story. I hope they have talked with other parents about what has worked for their kids. It is up to them to educate as tireless as it is. If a kid cannot function in a regular classroom, is it fair to that child to get the attention in a self contained environment? It is a tough call. I would want my child to learn to function the best he can inside a regular classroom [inclusion]and hope he gets better as time goes on, as it must be an all consuming for the families involved. My wish is that this family finds some balance in their lives and some solutions for they will be in great need of those resources down the road, when they may need caregivers, and maybe some time to resume some normalcy as a couple. Advocating can have a way of draining your every resource, emotional, spiritual and financial.
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All of us have our own experiences which help define who we are and what keeps us trudging forward. Tonight for example, I found a quick solution so that my son, Michael, could work on the computer and drink from a lemonade bottle at the same time. He cannot lean forward as he cannot get back into position. The reason he cannot lean forward is that he had rods put into his back. First, I put a straw into the bottle and he was unable to reach it without leaning forward. So then I grab a long straw but it is too high. I cut the straw down… still it is not quite right. Finally I cut a hole in the side of the bottle near the neck and slid the straw into it. Improvising is always fascinating! Then I was free to cook dinner. My view as mom/caretaker has left me with some very humorous memories. Oh yes, there have been some poignant moments, but it is the comical stories which surface. This specific category will have a little of both types of stories. My purpose is to let readers into our lives and to allow them to see us as an average family dealing with some unusual circumstances. I think we all know how to juggle. Ultimately, I hope to help others along my journey. When my son was still ambulatory and a student at Redbank School, a comical incident happened one day. There was a boy in his class who really gave him a tough time and Michael was very shy and quiet. I think Michael encountered many problems because he had great difficulty walking from age eight until age ten. The kids knew he was different and maybe they were a little afraid. One day as I was busy helping Mike’s brother get ready for school, Mike was getting his backpack. It was not until he came home that he and JT were laughing about something. I asked them what was so funny. Mike admitted that he had taken an unsweetened square of baking chocolate from the fridge and had given it to the boy who was giving him a hard time. The boy was all excited that he was getting a piece of chocolate and took one bite and spit it out. I guess the look on his face was enough to make Mike laugh. The best part of the story is that they became fast friends after that. When Mike received his first electric wheelchair, he had his first experience learning to walk our new dog, who was a cute little schnauzer named Schultzie. The following incident is a reason that seatbelts are so important for people using wheelchairs. I wrapped Schultzie’s leash around Mike’s hand and the dog pulled him out of his wheelchair, which had to immediately be turned to the “off”position. A car drove past and the drivers looked at us with horror, while I calmly picked Mike up off the pavement, brushed the dirt off his face as he looked at me with a disgusted look while my other son ran after the dog, and lifted Mike back into his wheelchair, making sure it was in the “off” position. I buckled his seatbelt, and wiped a few tears and exclaimed, “Ok, let’s try that again” We walked the dog some more and Mike complained that his leg hurt. I told him that he probably bruised it. It was not until later that evening, about six hours later, that I put him in bed , with his legs stretched outwards that he began to cry and complain of pain. I said to him that we probably should visit the ER at Maine Medical Center, as I anticipated that he broke some bone. I did not get “Mother of the Year Award” that night as we found out his leg was broken. A broken leg affects dressing, bathing and toileting… so the next few weeks were a little humorous. Mike was and still is a pretty good sport. I try to get together with other moms from time to time whose sons have Muscular Dystrophy just to exchange ideas, solutions and to maintain support between all of us. One night in particular, I met my friend Rosa who has two sons with M.D. We were only 7 miles from my home when I received a call from my youngest son who was very upset. He was crying. My son, JT, was about twelve years old, two years younger than Mike. He was very upset so I told him to calm down, that it was alright whatever it was. He then tells me that he and Mike got into a fight and JT pulled on Mike’s shirt. Again, Mike’s seatbelt was not fastened. You guessed it… Mike landed on the floor. JT felt bad he had done this to his brother. I reassured JT that it was okay; that brothers usually fight…even if one was in a wheelchair. I told JT not to feel badly and to let me talk with Mike. JT brought the phone to Mike and held the phone for him. I asked Mike if he was okay and did he believe he broke any bones. He said he did not feel anything was broken. I said to try to relax and I would be right home. My friend Rosa is a wonderful friend. She said, “Suzan, I will go with you and then we can come back here later for coffee” I agreed and off we drove back to my house. I remember coming inside and seeing JT who I could tell felt badly, so I gave him a hug and off I went to Mike’s room. Mike was lying on the floor sort of twisted up and he had the most disgusted look on his face. All he could do was to lay there angry with no way to vent the anger except lay there and let it dissipate. I asked him if he was alright. Rosa helped as I got the Hoyer lift to get him off the floor and into his wheelchair again. I had both boys look at each other and say they were sorry and to move beyond what had happened. Fighting is all part of growing up now, isn’t it? Everything worked out well and we went back to North Windham for coffee. Motherhood…. I wouldn’t trade it for anything! They have sometimes taught me more than I have taught them.
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