On the way to work today, I heard a news story about a couple in Oregon who sued and won a wrongful birth lawsuit. Yes. "A wrongful birth lawsuit." They claimed that the doctor failed to correctly identify that their child was going to be born with Downs Syndrome. Had they known, they say they would have terminated the pregnancy. I am not writing this in judgment of their decisions or their situation. They must live with the choices that they make in their lives. Instead, I am writing from the perspective of what would I have done if I had known in advance about my youngest son's issues. If I had known about all of the money we would spend; all the sleepless nights we would have; all the appointments and therapists who would visit; and all the stress and strain we would have on our relationships, would I have made the choice to keep him?
After a long, often stressful day working with adjudicated females, there are days I don't feel equipped to be his mother. I don't feel up to being encouraging about practicing handwriting with a child who has expressive fine motor delays. Practicing speech patterns with a child with disfluencies, speech blocks, and repetitive patterns is sometimes the last thing I want to do after a day of trying to motivate students who want nothing to do with learning or education. Yet, it almost never fails that on these days, he ends up encouraging and motivating me. As he sits at the table, with his characteristic death grip on that pencil, practicing those letters and words, he looks up at me with that smile that melts hearts and I can't help but feel ashamed of myself. He has to work so hard to do things that come so easily to the rest of us, things we absolutely take for granted but he never gives up. How dare I feel tired and overwhelmed when things come so easily for me? This little man of mine teaches me a lot about strength and perseverance and most of all, humility.
Patience. Did I really know what that was before my youngest child was born? I'm not sure I did. Before he was born, I never faced the minutes as they crawled into hours, as a child struggled to breathe and I waited to be able to administer the treatment and medicine that may or may not get him relief. In the days before he was born, I had never experienced the frustration and fear that comes with not knowing, not having a diagnosis or clear explanation why your child was delayed. I had never had to wait for answers to questions that the experts didn't have answers to. Before my son was born, I never had an argument with a child with no understanding of the concept of time. Additionally, before my son was born, I had never attempted to complete homework with a child who writes in complete mirror image whenever he is tired. Erasing the same sentence over and over, so that he can eventually write it down correctly. No. I don't think I knew the real meaning of patience.
Struggles and trials are part of our life with our son but there are so many snapshots of joy that come to mind when I think of him. I love cuddling on the couch with him, reading stories or watching "his shows". The image of him wiggling his little behind at us and singing "I'm sexy and I know it." Yeah. Try and keep a straight face with that one. I dare you. Picturing him as he walked backwards down our long driveway, painfully slowly, but step by step, here he came, because his brother dared him to. When he reached the porch, he spun around with a smile bigger than the sun and ran in the door laughing. Seeing him slurping wonton out of a bowl like it's leftover milk from breakfast cereal, then giggling and telling us how much he loved the egg soup. Remembering him laying on the ground, while trying to fly a kite, because that's what his brother was doing, so that's what he wanted to do. My favorite image is him falling asleep in the back of the truck as we drove home from hiking together. He had managed to wiggle himself into the corner and looked so very, very sweet as he snored away like a little old man.
Knowing what I know now, would I have made the choice to keep him? Resoundingly, I say yes! Life without my youngest would be like living life with the dimmer switch on. The colors would be less vibrant. The smells would be less sweet. Without him, the laughter would be less spontaneous, less heartfelt. Our appreciation of the little moments of joy would be less pronounced. Because of him, I am tired and stressed and some days completely overwhelmed. But because of him, I am also a better person, who has been touched by grace and given the opportunity to grow in ways I never could have imagined possible. Thank you God for the chance to be his mother. Thank you for the lessons that he teaches me on a daily basis. I can't imagine a single day without him in my life.
Tuesday, March 13, 2012
Friday, March 9, 2012
A Father's Perspective
In the past, I have discussed the impact of having a child with special needs on the family as a whole; on myself, as a mother; and on my oldest son, as an older sibling. Today, I will attempt to relate the experience of parenting a child with special needs from my husband's perspective. Statistics are unclear regarding fathers and children with special needs. What statistics are available tend to paint a somewhat bleak picture. They show that the divorce rates of parents of children with special needs are higher than the national average and that those households are usually headed by mothers raising their children alone. That is why a father's perspective is very important indeed.
While discussing our son and his issues, the question arose, "What is the most difficult thing about being a father to our son?" After a pause, my husband replied, "It depends on whether you mean in the past or present tense." In the past, it would have been coming to terms with how he parented our boys and his priorities in regard to our family. Our oldest son was a very easy child to raise. Because of that, my husband admits that it was very easy for him to go off and do what he wanted without having to think about the impact it would have on the family. He could do the things that interested him without worrying that it was keeping me from doing what I wanted to do because our son would cooperate with pretty much anything.
Such is not the case with our youngest son. Our world now revolves around who is supervising our youngest child. If he is around, it requires a dedicated level of attention and supervision because you cannot predict what he is getting into or if he is a being a safety risk to himself. Even at six years of age, it requires a level of supervision comparable to that of a three or four year old. My husband commented that "You just can't trust him." Our youngest son is highly impulsive. He lacks an awareness of danger and an awareness of the consequences of his behavior. If you tell him no or stop, he does not understand that by not listening, he could get hurt. My husband started taking our oldest son with him to the fire hall, to the wood shop, and to the woods to go hunting at a very young age. He is very hesitant to do these same things with our youngest son. "You can't turn your back on him for a second or trust that he is staying out of trouble" like you could with our oldest son, who would ride his tricycle around the shop for hours while my husband worked on projects. Our youngest son thinks nothing of stealing tools and climbing under or on the tractor to "work on it". Images of him turning on a belt sander or table saw keep my husband from trusting him to go along to work on projects. In addition, once our youngest fixates on something he wants to do, no amount of distraction or redirection will sway him from avoiding that activity, even if that activity could be dangerous.
Because of these supervision issues with our youngest, my husband has had to learn to prioritize. He has had to learn to tell others outside of the family no. It also means that sometimes he needs to put aside what he wants to do for the good of the family. He may need to come home to get the boys off the bus instead of going out hunting right after work. Not much fun, that's for sure, but I can tell you that the choices he is making are paying off big time. The boys recognize that he is around more. They are less resistant to his redirection and feedback and have stopped coming to me to second guess what he is telling them. His time at home is seen as less of a distraction from our routine and is now seen as more of a blessing. It is now normal to hear "Daddy, come cuddle with me." or "Daddy, come read me this book." It is common these days to see them cuddled up watching a hunting program or an episode of The Three Stooges.
In terms of parenting in the present, my husband admits that having our youngest son has made him have to take a closer look at how he parented. It was easy to "bully" our oldest son into doing what he needed to do. If you raised your voice, our oldest son would stop what he was doing and cooperate. This was how my husband used to parent. This DEFINITELY doesn't work with our youngest child. Our youngest cannot be bullied. He cannot be intimidated. Instead, he sees these behaviors as a direct challenge. His issues and his personality have caused my husband to have to closely examine how he interacts with our children. As he puts it, "I have had to look at my level of patience when it comes to our boys." Instead of demanding or ordering, he has learned to ask. Instead of coming off with anger, he has learned how to discuss, reason, and explain. He admits that having to learn to be patient with them isn't a bad thing. Our oldest son may have let us get away with lazy parenting techniques. Not our youngest. Nope. He will make us work twice as hard, but in the end, the results are more positive for everyone. We have both learned to be better parents because of him.
Our youngest child has also taught my husband that "not all battles need fought today." He has had to learn to choose wisely when it comes to addressing issues with him. Is this an issue that can be won today, or is it an issue that needs to wait to be waged at a later date? Will our son's skills allow him to grasp the significance of what he is trying to get across to him? This is a skill that has value when interacting with people across all walks of life.
When asked what was the best part of being a Dad to our youngest son, my husband's face lit up with a smile and he replied without delay, "He's such a cool kid. They both are. But he's just an awesome kid. He's a crazy little nut." It's fun to watch him become who he's going to become. "The chance to help to raise a special young child like this is priceless." To take pride in who he is and who he is becoming. To know that we had a part in that. That is what makes it worth all the hard work, worry, and sacrifice. And isn't it fun to see, that while we are teaching and helping him to grow, he's doing the same for us as well.
While discussing our son and his issues, the question arose, "What is the most difficult thing about being a father to our son?" After a pause, my husband replied, "It depends on whether you mean in the past or present tense." In the past, it would have been coming to terms with how he parented our boys and his priorities in regard to our family. Our oldest son was a very easy child to raise. Because of that, my husband admits that it was very easy for him to go off and do what he wanted without having to think about the impact it would have on the family. He could do the things that interested him without worrying that it was keeping me from doing what I wanted to do because our son would cooperate with pretty much anything.
Such is not the case with our youngest son. Our world now revolves around who is supervising our youngest child. If he is around, it requires a dedicated level of attention and supervision because you cannot predict what he is getting into or if he is a being a safety risk to himself. Even at six years of age, it requires a level of supervision comparable to that of a three or four year old. My husband commented that "You just can't trust him." Our youngest son is highly impulsive. He lacks an awareness of danger and an awareness of the consequences of his behavior. If you tell him no or stop, he does not understand that by not listening, he could get hurt. My husband started taking our oldest son with him to the fire hall, to the wood shop, and to the woods to go hunting at a very young age. He is very hesitant to do these same things with our youngest son. "You can't turn your back on him for a second or trust that he is staying out of trouble" like you could with our oldest son, who would ride his tricycle around the shop for hours while my husband worked on projects. Our youngest son thinks nothing of stealing tools and climbing under or on the tractor to "work on it". Images of him turning on a belt sander or table saw keep my husband from trusting him to go along to work on projects. In addition, once our youngest fixates on something he wants to do, no amount of distraction or redirection will sway him from avoiding that activity, even if that activity could be dangerous.
Because of these supervision issues with our youngest, my husband has had to learn to prioritize. He has had to learn to tell others outside of the family no. It also means that sometimes he needs to put aside what he wants to do for the good of the family. He may need to come home to get the boys off the bus instead of going out hunting right after work. Not much fun, that's for sure, but I can tell you that the choices he is making are paying off big time. The boys recognize that he is around more. They are less resistant to his redirection and feedback and have stopped coming to me to second guess what he is telling them. His time at home is seen as less of a distraction from our routine and is now seen as more of a blessing. It is now normal to hear "Daddy, come cuddle with me." or "Daddy, come read me this book." It is common these days to see them cuddled up watching a hunting program or an episode of The Three Stooges.
In terms of parenting in the present, my husband admits that having our youngest son has made him have to take a closer look at how he parented. It was easy to "bully" our oldest son into doing what he needed to do. If you raised your voice, our oldest son would stop what he was doing and cooperate. This was how my husband used to parent. This DEFINITELY doesn't work with our youngest child. Our youngest cannot be bullied. He cannot be intimidated. Instead, he sees these behaviors as a direct challenge. His issues and his personality have caused my husband to have to closely examine how he interacts with our children. As he puts it, "I have had to look at my level of patience when it comes to our boys." Instead of demanding or ordering, he has learned to ask. Instead of coming off with anger, he has learned how to discuss, reason, and explain. He admits that having to learn to be patient with them isn't a bad thing. Our oldest son may have let us get away with lazy parenting techniques. Not our youngest. Nope. He will make us work twice as hard, but in the end, the results are more positive for everyone. We have both learned to be better parents because of him.
Our youngest child has also taught my husband that "not all battles need fought today." He has had to learn to choose wisely when it comes to addressing issues with him. Is this an issue that can be won today, or is it an issue that needs to wait to be waged at a later date? Will our son's skills allow him to grasp the significance of what he is trying to get across to him? This is a skill that has value when interacting with people across all walks of life.
When asked what was the best part of being a Dad to our youngest son, my husband's face lit up with a smile and he replied without delay, "He's such a cool kid. They both are. But he's just an awesome kid. He's a crazy little nut." It's fun to watch him become who he's going to become. "The chance to help to raise a special young child like this is priceless." To take pride in who he is and who he is becoming. To know that we had a part in that. That is what makes it worth all the hard work, worry, and sacrifice. And isn't it fun to see, that while we are teaching and helping him to grow, he's doing the same for us as well.
Friday, March 2, 2012
Parenting During Times of Trial
Most parents can probably identify with the experience of trying to be the best parent that they can be while living through personally difficult times. We all face them - death of a loved one; illness; accidents; financial worries; or relationship problems. Life doesn't wait for the ideal moment to throw these challenges at us. Rarely do we have the luxury of facing just one obstacle at a time. Life's problems tend to come at us in clusters instead of single, easily handled challenges. At least that has been my experience.
The last two years of my life seems to have been one shocking event after another. Please understand that this is not a pity party or a plea for sympathy. It is merely a statement of fact. As I have discussed previously, my husband and I have worked diligently to repair and strengthen a marriage that in the past was one of the absolute best but had begun to weaken due to neglect as we cared for our youngest son with his health and learning issues. It is a challenge that may have been overwhelming in and of itself. But it is just one of many challenges that we have had to learn to face together. Some of our biggest challenges have taken place in the last nine months alone. Following months of gallbladder attacks that they mistakenly took for an ulcer, I was admitted to the hospital for emergency gallbladder surgery and pancreatitis. It was severe enough that my small intestine had begun to shut down. The day I was discharged from the hospital, as I began to come out of the anesthesia, I realized that I had no hearing in my left ear. At some point during my hospitalization, I had gone deaf. In addition, I was having trouble keeping my balance and focusing my eyes together. I lost the ability to read for almost three weeks. What followed was weeks of specialist appointments and tests. The only treatment option available to try to help me regain my hearing was to have liquid prednisone injected through my ear drum and into my inner ear. This was done three times on a weekly basis. To say it was uncomfortable, is a bit of an understatement.
As the summer began to draw to a close, I was faced with the need to adjust to the reality of teaching in a corrections setting with only one functional ear (the loss is profound and permanent). At the same time, our family was bracing for the reality of my youngest son, with all of his learning/developmental issues, starting school. How would we balance it all? How would we face his issues as well as our own? The idea was daunting and overwhelming.
We did okay. There was a definite learning curve with both issues. Just as we seemed to be finding our stride, I started losing fields of vision. When I say I lost fields of vision, I mean I would only see the top half of a view. Everything below mid line would be black or black and sparkly. Or I could see out of one eye, but not both. Sometimes things just seemed out of balance or foggy. The vision loss usually lasted an hour or two, then would return to normal. This new development earned me a series of new tests and specialist appointments. Good times. Oh yeah, good times. It was finally determined by a neurologist and optomologist that I had ocular migraines. No. They didn't know why for sure. They decided to put me on a medicine called Neurotin to help rectify this problem. It seemed to help.
During this time, we were trying to get my youngest son's Individualized Education Plan (IEP) in place. This followed months of testing and waiting. The school finally had everything in place to start services for him at school. I was trying to stay on top of school documents, school meetings, and everything else he needed me to be doing to make him successful, while I was distracted by my own issues. I often felt I was letting him down.
Around this same time period, my audiologist and ENT specialist talked to me about a surgical procedure that could be used to help me regain my hearing to some degree. They called it the BAHA implant. As a trial, they let me wear a headband devise with a small receiver attached on the side of my hearing loss. For the first time since June, I could hear. This was a very emotional moment and definitely helped me make the decision to have the surgery. It would involve hollowing out a bowl of tissue behind my deaf ear and implanting a titanium rod (abutment) into my skull. After three months of healing, they would attach a small receiver to the abutment. Sound would travel from the receiver, through my skull, to my good ear, providing the ability to hear again. Initially, my health insurance denied me the surgery, but my doctor spoke on my behalf and they reevaluated my case and approved it. The initial surgery went well. The hearing cap fell off the day after the surgery and we had to go back in to have it put back in place but everything else seemed to be going well. It was an interesting experience. Once the healing cap, which looked like a men's athletic cup, came off permanently, I had to rely on my husband for even basic care of the surgical site. He had to wash my hair for me as I tried to keep the incision site dry. He cleaned and bandaged my head for me. During this time, he did homework and kiddo duty. I couldn't have done it physically, mentally, or emotionally without him. He has been an amazing rock through all of it.
Then a week before Christmas, while at work, in the middle of teaching, the implant fell out. I mean literally fell out of my head. It was very, very disheartening. My ENT specialist said it only happens in three percent of all surgical cases. I hadn't done anything wrong. The implant had just failed to adhere, or grow fast to the bone in my skull. I would need to wait three weeks for the original site to heal. After it was found to be healed, the surgeon would re-implant another titanium abutment in an adjacent location. That meant I was starting all over. It would be three MORE months after this new surgery before I would be able to get my receiver and gain my hearing back. This was a very serious blow to my spirits. Fortunately, we got through the holiday season unscathed and the new implant was successfully implanted in mid-January. I was scheduled to get my receiver in mid-April, but the specialist called and rescheduled the appointment to mid-May. Disappointing but at least things are going as anticipated this time.
I am currently writing this while signed off from work recovering from pneumonia. It has indeed been a year of challenges. Please recognize that I know that there are many, many people who face much more serious and overwhelming problems than I have described. A wonderful woman that I graduated school with is facing cancer for like the third or fourth time. That is much more traumatic than what I have gone through. The point I am trying to make is that life can be challenging, even traumatic. So how do you get through it and still manage to raise happy successful children? How do you meet their needs while trying to meet your own? These are the questions I have had to address, particularly over the last year. I am still learning to answer them.
For me, it has taken recognizing that I'm going to screw up. There are no perfect parents, just those who are trying their darnedest to get it right. I have had to learn to ask for help from friends and family. This isn't easy for me. I have also had to learn to lean on my husband through the tough times. Again, not an easy thing for an independent, Type A individual. Most importantly, I have learned to lean on my God and Savior. As problem after problem kept coming, I began to question, "Why?" I live by the motto of help others; be kind and polite; do the right thing always. So why did life keep knocking me down? I have come to the conclusion that God is preparing me. For what? I'm not sure. His time, not mine.
In many ways, the challenges of the last year have made the beautiful moments in life even more clear. There have been times, while recovering from one of my four surgeries, that I would see something happening in my home and think "Freeze. Right there. Don't forget that moment. It is so special and dear and amazing. Don't let it slip by." These moments usually involve my children interacting with each other in a loving or funny way. The image of my two boys curled up on the couch, totally engrossed in The Three Stooges, laughing out loud, eyes sparkling with joy and humor. Or they involve my husband caring for my children in his own loving and devoted way. I can see him leaning over the back of my son's chair, leaned over talking to him, as they work on homework. Not momentous moments, but the beauty of those scenes, stays with me. Maybe if I hadn't gone through the struggles of the last couple years, I wouldn't appreciate the little moments of beauty in my life. I vow to keep my eyes and heart open and wait to see where God leads me.
The last two years of my life seems to have been one shocking event after another. Please understand that this is not a pity party or a plea for sympathy. It is merely a statement of fact. As I have discussed previously, my husband and I have worked diligently to repair and strengthen a marriage that in the past was one of the absolute best but had begun to weaken due to neglect as we cared for our youngest son with his health and learning issues. It is a challenge that may have been overwhelming in and of itself. But it is just one of many challenges that we have had to learn to face together. Some of our biggest challenges have taken place in the last nine months alone. Following months of gallbladder attacks that they mistakenly took for an ulcer, I was admitted to the hospital for emergency gallbladder surgery and pancreatitis. It was severe enough that my small intestine had begun to shut down. The day I was discharged from the hospital, as I began to come out of the anesthesia, I realized that I had no hearing in my left ear. At some point during my hospitalization, I had gone deaf. In addition, I was having trouble keeping my balance and focusing my eyes together. I lost the ability to read for almost three weeks. What followed was weeks of specialist appointments and tests. The only treatment option available to try to help me regain my hearing was to have liquid prednisone injected through my ear drum and into my inner ear. This was done three times on a weekly basis. To say it was uncomfortable, is a bit of an understatement.
As the summer began to draw to a close, I was faced with the need to adjust to the reality of teaching in a corrections setting with only one functional ear (the loss is profound and permanent). At the same time, our family was bracing for the reality of my youngest son, with all of his learning/developmental issues, starting school. How would we balance it all? How would we face his issues as well as our own? The idea was daunting and overwhelming.
We did okay. There was a definite learning curve with both issues. Just as we seemed to be finding our stride, I started losing fields of vision. When I say I lost fields of vision, I mean I would only see the top half of a view. Everything below mid line would be black or black and sparkly. Or I could see out of one eye, but not both. Sometimes things just seemed out of balance or foggy. The vision loss usually lasted an hour or two, then would return to normal. This new development earned me a series of new tests and specialist appointments. Good times. Oh yeah, good times. It was finally determined by a neurologist and optomologist that I had ocular migraines. No. They didn't know why for sure. They decided to put me on a medicine called Neurotin to help rectify this problem. It seemed to help.
During this time, we were trying to get my youngest son's Individualized Education Plan (IEP) in place. This followed months of testing and waiting. The school finally had everything in place to start services for him at school. I was trying to stay on top of school documents, school meetings, and everything else he needed me to be doing to make him successful, while I was distracted by my own issues. I often felt I was letting him down.
Around this same time period, my audiologist and ENT specialist talked to me about a surgical procedure that could be used to help me regain my hearing to some degree. They called it the BAHA implant. As a trial, they let me wear a headband devise with a small receiver attached on the side of my hearing loss. For the first time since June, I could hear. This was a very emotional moment and definitely helped me make the decision to have the surgery. It would involve hollowing out a bowl of tissue behind my deaf ear and implanting a titanium rod (abutment) into my skull. After three months of healing, they would attach a small receiver to the abutment. Sound would travel from the receiver, through my skull, to my good ear, providing the ability to hear again. Initially, my health insurance denied me the surgery, but my doctor spoke on my behalf and they reevaluated my case and approved it. The initial surgery went well. The hearing cap fell off the day after the surgery and we had to go back in to have it put back in place but everything else seemed to be going well. It was an interesting experience. Once the healing cap, which looked like a men's athletic cup, came off permanently, I had to rely on my husband for even basic care of the surgical site. He had to wash my hair for me as I tried to keep the incision site dry. He cleaned and bandaged my head for me. During this time, he did homework and kiddo duty. I couldn't have done it physically, mentally, or emotionally without him. He has been an amazing rock through all of it.
Then a week before Christmas, while at work, in the middle of teaching, the implant fell out. I mean literally fell out of my head. It was very, very disheartening. My ENT specialist said it only happens in three percent of all surgical cases. I hadn't done anything wrong. The implant had just failed to adhere, or grow fast to the bone in my skull. I would need to wait three weeks for the original site to heal. After it was found to be healed, the surgeon would re-implant another titanium abutment in an adjacent location. That meant I was starting all over. It would be three MORE months after this new surgery before I would be able to get my receiver and gain my hearing back. This was a very serious blow to my spirits. Fortunately, we got through the holiday season unscathed and the new implant was successfully implanted in mid-January. I was scheduled to get my receiver in mid-April, but the specialist called and rescheduled the appointment to mid-May. Disappointing but at least things are going as anticipated this time.
I am currently writing this while signed off from work recovering from pneumonia. It has indeed been a year of challenges. Please recognize that I know that there are many, many people who face much more serious and overwhelming problems than I have described. A wonderful woman that I graduated school with is facing cancer for like the third or fourth time. That is much more traumatic than what I have gone through. The point I am trying to make is that life can be challenging, even traumatic. So how do you get through it and still manage to raise happy successful children? How do you meet their needs while trying to meet your own? These are the questions I have had to address, particularly over the last year. I am still learning to answer them.
For me, it has taken recognizing that I'm going to screw up. There are no perfect parents, just those who are trying their darnedest to get it right. I have had to learn to ask for help from friends and family. This isn't easy for me. I have also had to learn to lean on my husband through the tough times. Again, not an easy thing for an independent, Type A individual. Most importantly, I have learned to lean on my God and Savior. As problem after problem kept coming, I began to question, "Why?" I live by the motto of help others; be kind and polite; do the right thing always. So why did life keep knocking me down? I have come to the conclusion that God is preparing me. For what? I'm not sure. His time, not mine.
In many ways, the challenges of the last year have made the beautiful moments in life even more clear. There have been times, while recovering from one of my four surgeries, that I would see something happening in my home and think "Freeze. Right there. Don't forget that moment. It is so special and dear and amazing. Don't let it slip by." These moments usually involve my children interacting with each other in a loving or funny way. The image of my two boys curled up on the couch, totally engrossed in The Three Stooges, laughing out loud, eyes sparkling with joy and humor. Or they involve my husband caring for my children in his own loving and devoted way. I can see him leaning over the back of my son's chair, leaned over talking to him, as they work on homework. Not momentous moments, but the beauty of those scenes, stays with me. Maybe if I hadn't gone through the struggles of the last couple years, I wouldn't appreciate the little moments of beauty in my life. I vow to keep my eyes and heart open and wait to see where God leads me.
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