As I have eluded to in recent posts, our little man hasn't been making as much progress in therapy or at school as we had hoped. He was frustrated. The educational team was somewhat perplexed and a tad frustrated. His father and I were flat out exhausted. We felt like we had pursued all avenues and shaken all the bushes with little to show for it. What more could we all be doing?
Today we met with the educational and therapeutic team. It was very very productive. Apparently the neurology report we had taken into school back in November had been placed in his file but never been passed along to the educational team for review. When they located the latest neuro report, they discovered that our son had been diagnosed with attention deficit disorder (ADD) and an evaluation for a language based learning disability had been strongly recommended. From a school standpoint, this opened all kinds of doors. He now qualifies for academic based goals instead of just speech, occupational therapy and physical therapy based goals. The types of services and teaching tools that can now be utilized has been expanded dramatically. A timeline was discussed for implementing his new goals and arranging new evaluations. New doors were opened.
We also discussed the need to have him evaluated for a central auditory processing disorder by a specialized audiologist. They would also like us to pursue having him evaluated for a functional vision disorder by a specialized pediatric optometrist. These evaluations may be able to pinpoint the source of his processing issues. If they can't identify a causation, they can at least narrow down the possibilities. New direction. Maybe some answers.
The assembled team included the special education director of the school district (and mother of a special needs child), his occupational therapist and her supervisor, his speech therapist, his teacher, and his Dad and I. We were able to discuss our concerns and needs as a team with everyone present for the first time. At his individualized education plan (IEP) meeting, several of these members had been missing. As a result, needed information was not passed along. At this meeting, everyone was there and obviously concerned and invested in helping our son meet his goals. His teacher requested communication between the therapy team and himself so that he can better implement their ideas and techniques in the classroom. Emails and phone numbers were exchanged for faster and more effective communication. Communication was improved. More effective goals identified.
As his parents, we were able to shed light on some of the issues that had begun to develop at school. We were able to identify that our son, who had always seen himself as awesome and amazing, was now starting to recognize that he was different from his peers. He is terribly frustrated with himself and his circumstances at the moment. There isn't anything that we as the assembled team can do for him other than help him navigate this time. It is part of the growing process when you have the learning and developmental issues that he has. But this knowledge helped identify why he was becoming resistant to eating in the cafeteria; or being separated from his peers to go to therapy; or seeking approval from his classmates when before he was content to march to his own little drum. Behaviors that they had seen or been concerned with now made more sense. Our sons motivations were identified and clarified. Better understanding and empathy was developed.
We were able to explain what our evenings were like with a kiddo who holds it together all day because he wants to fit in and make everyone happy but explodes upon getting home. They said this is normal for children with his issues. Once the kiddos are home where they feel loved and protected, they feel safe enough to release the frustration they have held in all day at school. The special education director, who has navigated these waters with her own son, also identified that part of his exhaustion by the end of a day/week was also normal. Every single thing he does in a day is still a purposeful, cognitive decision. While most of us learn to do simple life tasks on auto pilot, children like ours still have to think their way through these same seemingly simple tasks. Of course they are tired by the end of a day/week. As a team, we were able to identify some "hot spots" for us and problem solve some possible solutions. Although we felt as if these issues didn't really apply to school, they assured us that they do because if he is struggling with basic self help skills like feeding himself or buttoning a button fly pair of jeans, that takes away energy and effort that could be devoted to learning. If he is feeling unsure of himself and where he fits into the school environment, he is less focused on learning. They provided us with a measure of peace and a feeling that we weren't alone in this journey.
My husband and I are both problem solvers. We approach life with a "identify the problem and fix it" mentality. Our son is one "problem" that we haven't been able to "fix". The process of helping him adapt to a life that wasn't designed for people like him has been nothing short of physically and emotionally exhausting. Today we found new hope. We found new avenues to pursue. We discovered that there was a team of people who truly care about our child and want him to succeed just as we do. I believe this. And once again, I am presented with the life lesson that I must wait patiently for God's time, not my own. He will provide answers and solutions when the time is right. Is our son "fixed"? No. Will he ever be completely "fixed"? I don't know. Today has increased my faith that maybe in God's time we will have greater answers and understanding. He has a plan for our amazing little man. Someday, we'll know what it is and look back and say "Thank you Lord for your providence."
Friday, February 15, 2013
Tuesday, February 12, 2013
Life's Always A Choice
Our son turned seven on Friday. It has been a long journey filled with stress, heartache and joy.
At the end of the first semester of first grade, things aren't looking as rosy as we had hoped. His occupational therapist has asked us to "take a break" from therapy for awhile because he is failing to meet his therapy goals. She thinks he's frustrated with the process and needs a break from it. His teacher has requested a meeting with ourselves and the therapy team at school because he isn't meeting his goals there either. We are dealing with a very frustrated young man these days. As a result, he's not always a barrel of laughs to live with. In light of that, and in celebration of his birthday, I'm choosing to focus on the fun. The following are just a handful of reasons that life is better, more fun, and definitely more interesting with our little monster in it.
At the end of the first semester of first grade, things aren't looking as rosy as we had hoped. His occupational therapist has asked us to "take a break" from therapy for awhile because he is failing to meet his therapy goals. She thinks he's frustrated with the process and needs a break from it. His teacher has requested a meeting with ourselves and the therapy team at school because he isn't meeting his goals there either. We are dealing with a very frustrated young man these days. As a result, he's not always a barrel of laughs to live with. In light of that, and in celebration of his birthday, I'm choosing to focus on the fun. The following are just a handful of reasons that life is better, more fun, and definitely more interesting with our little monster in it.
- His brother says his favorite thing about his little brother is that he can make friends with anyone, anywhere, at any time. For example, when we went to a Crosscutters baseball game this summer, our son adopted the bus driver for the opposing team. He was a very large, somewhat imposing figure of a man. Our son "arrested" him; put his hands behind his back; and put him in jail with all the other "bad guys" he had arrested. Bless his heart! The poor guy played along.
- His father says our son has the funniest little antics or methods of dealing with the challenges that life has thrown at him. His poor motor skills interfere with him doing simple tasks like opening a yogurt tube. His hands are too big and clumsy. Instead, he has learned that he can grab the corner with his teeth and tear the top open. Success!
- Our son is a first class little Romeo. He blatantly flirts with girls/women much older than him... and they fall for it! One afternoon when we went to a local shoe store, he ended up following this cute little blond around the store making eyes at her and declaring "She's stalking me!" At the checkout, we ran into them again and she laughed and laughed. She thought he was adorable.
- One of my favorite things is coming into the living room and finding the boys curled up on the couch together reading a story or watching a show on TV. Our youngest absolutely loves and adores his big brother.
- Our little man always wants everyone included in everything he does. If he gets a snack from his grandmother, he has to be sure to get one for his brother. When he gets a sticker from the doctor, he always wants one for his brother and his Dad.
- He is the defender of the underdog. If someone is in trouble, he has to come to their defense, even if they are blatantly in the wrong. When I told his father that he was too sick to go to work because he needed to stay home and rest, our son strongly defended him. "Let him go to work!" At times, our oldest will tell his brother "No buddy. Mom and Dad are right to tell me that. I was wrong." (Thank God we have a wonderful older son who is so responsible!)
- While completing homework, especially reading his reading book together, he often falls asleep. If he falls asleep and we can't wake him back up, we go ahead and put him in bed for the night. He will groggily ask "Can I brush my teeth twice tomorrow?" Yes little man, you brush your teeth twice everyday.
- This year on Groundhogs Day, he told his grandparents that if the "beaver" saw his shadow it would be an early "summer". He has been very offended that it keeps snowing and now he thinks the "beaver" is a liar.
Friday, January 18, 2013
You've Just Got to Love Him
As we walk into one of our favorite restaurants, the owner steps out from behind the kitchen area to come greet us. He and my youngest son had become buddies through our different trips to the creamery. When we walked in the door, the owner bellowed "How's it going big daddy?" My son looked back with a huge smile and said "There's my big buddy." He then ran up to the counter, high-fived the owner, and proceeded to order his supper. Part way through eating his supper, he informs the owner that he wanted cheese on his hot dog. He and the owner have a conversation about Cheez Wiz before he wanders off to heat up a "special bowl of cheese for his little buddy". After returning to our table, he dollops spoons of melted cheese over the hot dog and informs him that the extra should be used to dip his chips in.
This is a very typical evening out with our son. Everywhere we go, everyone seems to know and love him. If they don't know him, they soon will. He totally lacks boundaries. You will become his friend because he leaves you no choice. We have attended several family reunions or social functions where we knew hardly anyone in attendance. Within moments of our arrival, he manages to introduce himself and engage even the most standoffish individuals in conversation. His specialty is grumpy old men who like to hide by themselves in corners. He wanders over, sits down beside them and starts chatting them up as if they were old buddies. I used to worry that he was bothering people. Now I just stand back and watch him work his magic. By the end of the afternoon, he is hugging and kissing people goodbye who were complete strangers only a few hours before.
I worry about his same age peers though. Kids can be very cruel. They haven't developed the filters that we adults often utilize. They say what comes to mind. When he was younger, it was less apparent that he lagged behind his same age peers. He is now at an age though where he is taller and bigger than kids his age yet it is starting to become more obvious that he lags behind them developmentally. Some of his peers have encouraged him to do things and say things that ended up getting him in trouble at school. Because of his lack of boundaries, he doesn't always recognize that other kids his age don't want to be hugged or kissed or pulled on to get their attention. I fear that he will be seen as "that strange kid" that the others tease or make fun of.
There are signs that he is starting to recognize that there are some differences between him and his peers. He displays some subtle behavior shifts that show a rising awareness of the differences. He is developing a greater resistance to attending his occupational therapy sessions. His therapist voiced that he doesn't understand why he needs to keep coming to OT because he doesn't see himself as different from his peers. He definitely has a need for the services because he isn't meeting his therapy goals. I think his resistance has more to do with the fact that he is starting to see the difference between him and his peers. My heart aches for this transition/transformation. He is NOT dumb or slow intellectually. Unfortunately, his body will not let him express himself they way his same age peers can. There is an extremely bright child trapped inside a body that will not cooperate to move or speak the way he wants it to. To then recognize that others see him as different, must be frustrating beyond belief. I can't do anything to help him except offer my love and support. This is something he must learn and survive.
I have little fear for our son long term. He will learn to overcome his expressive issues. He is too strong willed by nature to do otherwise. He will develop friendships and relationships with many people along the way. He is too social by nature to do otherwise. He will succeed in whatever he cares strongly about. He is too oppositional by nature to do otherwise. I just pray that he doesn't encounter too much heartache or disappointment along the way. Life has given him enough of that. I pray we know how to support him through these years of transition and trial. Please Lord, help our son grow and develop into the man that You want him to be. It's going to be quite a journey.
This is a very typical evening out with our son. Everywhere we go, everyone seems to know and love him. If they don't know him, they soon will. He totally lacks boundaries. You will become his friend because he leaves you no choice. We have attended several family reunions or social functions where we knew hardly anyone in attendance. Within moments of our arrival, he manages to introduce himself and engage even the most standoffish individuals in conversation. His specialty is grumpy old men who like to hide by themselves in corners. He wanders over, sits down beside them and starts chatting them up as if they were old buddies. I used to worry that he was bothering people. Now I just stand back and watch him work his magic. By the end of the afternoon, he is hugging and kissing people goodbye who were complete strangers only a few hours before.
I worry about his same age peers though. Kids can be very cruel. They haven't developed the filters that we adults often utilize. They say what comes to mind. When he was younger, it was less apparent that he lagged behind his same age peers. He is now at an age though where he is taller and bigger than kids his age yet it is starting to become more obvious that he lags behind them developmentally. Some of his peers have encouraged him to do things and say things that ended up getting him in trouble at school. Because of his lack of boundaries, he doesn't always recognize that other kids his age don't want to be hugged or kissed or pulled on to get their attention. I fear that he will be seen as "that strange kid" that the others tease or make fun of.
There are signs that he is starting to recognize that there are some differences between him and his peers. He displays some subtle behavior shifts that show a rising awareness of the differences. He is developing a greater resistance to attending his occupational therapy sessions. His therapist voiced that he doesn't understand why he needs to keep coming to OT because he doesn't see himself as different from his peers. He definitely has a need for the services because he isn't meeting his therapy goals. I think his resistance has more to do with the fact that he is starting to see the difference between him and his peers. My heart aches for this transition/transformation. He is NOT dumb or slow intellectually. Unfortunately, his body will not let him express himself they way his same age peers can. There is an extremely bright child trapped inside a body that will not cooperate to move or speak the way he wants it to. To then recognize that others see him as different, must be frustrating beyond belief. I can't do anything to help him except offer my love and support. This is something he must learn and survive.
I have little fear for our son long term. He will learn to overcome his expressive issues. He is too strong willed by nature to do otherwise. He will develop friendships and relationships with many people along the way. He is too social by nature to do otherwise. He will succeed in whatever he cares strongly about. He is too oppositional by nature to do otherwise. I just pray that he doesn't encounter too much heartache or disappointment along the way. Life has given him enough of that. I pray we know how to support him through these years of transition and trial. Please Lord, help our son grow and develop into the man that You want him to be. It's going to be quite a journey.
Friday, January 11, 2013
Learning to Find the Humor Again
I haven't written for quite awhile. Life had gotten very busy and my writing needed to take a backseat. Ironically, if anything, life has gotten even more hectic and complicated. In light of life's recent twists, turns, and obstacles, I decided to make the time to write. I may be the only one who reads this, but the writing of it is a cathartic practice that helps to put the chaos that is my world into its proper perspective.
Our youngest son has been in a developmental lag for longer than we have typically experienced in the past. It has all of us a bit stymied and frustrated. His occupational therapist says his focus is much improved from the past but his motivation is lacking. At school, they tell us he is very motivated to do well and actively participates but lacks focus. At home, he is exhausted and prone to tantrums because he is exhausted. At least once every couple weeks, he falls asleep soon after coming home from school and sleeps until the next morning. We can tell the day of the week based upon his frustration level and tendency for tantrums. The later in the week, the greater the likelihood a meltdown will occur.
My method of coping with stress is to utilize a dry sarcastic sense of humor. In recent months, I had a difficult time finding the humor in our son's behavior. It didn't seem to matter what I tried or how hard I worked, he didn't seem to be improving. With everything else that life has thrown at me, I just couldn't find the silver lining or the funny in the moments like I had in the past. I was frustrated. Why couldn't I help my own son? I was angry. I didn't sign up for this. Why couldn't he be like other kids his age? I was scared. What if he doesn't start to catch up with his peers? Will life always be this hard for him? For us?
I look at the person I was before our youngest son. There are things that I miss about that girl. She thought the world was hers to take. Nothing was out of reach with enough hard work and effort. Wow. What naivete, or was it optimism?
On the other hand, I look at that girl and there are things about her that sadden me. How judgmental she could be! She looked at other people's life experiences and judged them without knowing what their lives were really like. Wow. I'm so sorry for that.
That girl also thought she knew the Lord. But her understanding of the Lord was based on a girl who seemed to be standing with her hands on her hips saying "Here I am Lord. Here's what I deserve. I'm your follower. Now make it happen." Wow. What complacency and arrogance. I'm especially sorry for that.
Life with my youngest son has opened my eyes in so many ways. I discovered that it doesn't matter what life hands you. It is never going to be fair. Or easy. Or uncomplicated. That's not how life works. What does ultimately matter is how you handle it.
I may no longer be that naive or optimistic girl of my past. Indeed, I am much less likely to judge the life of those around me. Instead, I have been greatly humbled by life. It has taken my hearing. It has shown me weakness of body and spirit. It has shown me that I can't cure my son or make him better. I can't control what circumstances life brings me and my family.
I am once again beginning to see the humor in life with our youngest son. He exhausts me. He frustrates me. He also makes me laugh like crazy.
We argued over socks. An argument that involved twenty minutes of trying to rationally, calmly explain why socks must be worn; that the socks must be dry ones, not wet ones; and that they must match since I sent him to school with his sneakers on the wrong feet the day before. (I didn't want them to think I was a COMPLETE failure as a mother!) For twenty minutes, I was calm. For twenty minutes, I was patient. For twenty minutes, I was a good mother. After twenty minutes... I lost my mind and found myself hopping up and down and ranting "Put on some matching socks right this minute or I am going to lose my mind." Who can't find humor in moments of insanity like that?
When his father told him he couldn't go to the Atrium Cafe at the hospital after therapy, he lay down in the middle of the hospital, on the floor and held a civil protest. Minutes later, he jumped up and declared he was the "worstest father in the world". He then ran down the hall and disappeared out of sight. My husband found him hiding in a corner down the hospital corridor. Who can't find humor in such lunacy?
After a particularly nasty meltdown, we gave him a bath to help him calm himself down. The warm water seems to take all the frustration and aggression out of him. It almost always works. As he lay in the tub, finally calm and relaxed, his father attempted to process the tantrum with him. "Now don't you think instead of throwing a tantrum and yelling at us, you could just try talking to us?" Our son looks at him, strokes his chin in serious thought and replies "Hmm. I should try that." Who wouldn't laugh at that? Well, come to think of it, maybe not everyone. But when faced with moments like these on a regular basis, you learn to find the humor when and where you can.
The life I am living has shown me that I can survive it. Not with my hands on my hips with demands of arrogance. Instead, I am surviving down on my knees, humbled in prayer. Please Lord, see me through these days. I don't know what you have planned for me and my family but if it is your will, please bring us through it. Maybe that was the lesson meant for me all along.
Our youngest son has been in a developmental lag for longer than we have typically experienced in the past. It has all of us a bit stymied and frustrated. His occupational therapist says his focus is much improved from the past but his motivation is lacking. At school, they tell us he is very motivated to do well and actively participates but lacks focus. At home, he is exhausted and prone to tantrums because he is exhausted. At least once every couple weeks, he falls asleep soon after coming home from school and sleeps until the next morning. We can tell the day of the week based upon his frustration level and tendency for tantrums. The later in the week, the greater the likelihood a meltdown will occur.
My method of coping with stress is to utilize a dry sarcastic sense of humor. In recent months, I had a difficult time finding the humor in our son's behavior. It didn't seem to matter what I tried or how hard I worked, he didn't seem to be improving. With everything else that life has thrown at me, I just couldn't find the silver lining or the funny in the moments like I had in the past. I was frustrated. Why couldn't I help my own son? I was angry. I didn't sign up for this. Why couldn't he be like other kids his age? I was scared. What if he doesn't start to catch up with his peers? Will life always be this hard for him? For us?
I look at the person I was before our youngest son. There are things that I miss about that girl. She thought the world was hers to take. Nothing was out of reach with enough hard work and effort. Wow. What naivete, or was it optimism?
On the other hand, I look at that girl and there are things about her that sadden me. How judgmental she could be! She looked at other people's life experiences and judged them without knowing what their lives were really like. Wow. I'm so sorry for that.
That girl also thought she knew the Lord. But her understanding of the Lord was based on a girl who seemed to be standing with her hands on her hips saying "Here I am Lord. Here's what I deserve. I'm your follower. Now make it happen." Wow. What complacency and arrogance. I'm especially sorry for that.
Life with my youngest son has opened my eyes in so many ways. I discovered that it doesn't matter what life hands you. It is never going to be fair. Or easy. Or uncomplicated. That's not how life works. What does ultimately matter is how you handle it.
I may no longer be that naive or optimistic girl of my past. Indeed, I am much less likely to judge the life of those around me. Instead, I have been greatly humbled by life. It has taken my hearing. It has shown me weakness of body and spirit. It has shown me that I can't cure my son or make him better. I can't control what circumstances life brings me and my family.
I am once again beginning to see the humor in life with our youngest son. He exhausts me. He frustrates me. He also makes me laugh like crazy.
We argued over socks. An argument that involved twenty minutes of trying to rationally, calmly explain why socks must be worn; that the socks must be dry ones, not wet ones; and that they must match since I sent him to school with his sneakers on the wrong feet the day before. (I didn't want them to think I was a COMPLETE failure as a mother!) For twenty minutes, I was calm. For twenty minutes, I was patient. For twenty minutes, I was a good mother. After twenty minutes... I lost my mind and found myself hopping up and down and ranting "Put on some matching socks right this minute or I am going to lose my mind." Who can't find humor in moments of insanity like that?
When his father told him he couldn't go to the Atrium Cafe at the hospital after therapy, he lay down in the middle of the hospital, on the floor and held a civil protest. Minutes later, he jumped up and declared he was the "worstest father in the world". He then ran down the hall and disappeared out of sight. My husband found him hiding in a corner down the hospital corridor. Who can't find humor in such lunacy?
After a particularly nasty meltdown, we gave him a bath to help him calm himself down. The warm water seems to take all the frustration and aggression out of him. It almost always works. As he lay in the tub, finally calm and relaxed, his father attempted to process the tantrum with him. "Now don't you think instead of throwing a tantrum and yelling at us, you could just try talking to us?" Our son looks at him, strokes his chin in serious thought and replies "Hmm. I should try that." Who wouldn't laugh at that? Well, come to think of it, maybe not everyone. But when faced with moments like these on a regular basis, you learn to find the humor when and where you can.
The life I am living has shown me that I can survive it. Not with my hands on my hips with demands of arrogance. Instead, I am surviving down on my knees, humbled in prayer. Please Lord, see me through these days. I don't know what you have planned for me and my family but if it is your will, please bring us through it. Maybe that was the lesson meant for me all along.
Thursday, June 21, 2012
Technology and It's Impact
As a lover of science, technology, and even science fiction, I was amazed when I heard about the genetic test in development that could help to identify nearly 3,000 medical conditions - before the baby is even born. It is being touted as non-invasive to both the parents and the fetus. The science lover in me is in awe of people who are capable of developing such sophisticated technology that can examine and decipher the mysterious conditions of the human anatomy. As a parent of a child with developmental and medical issues, I am torn by reports of this new technology. On one hand, I find its possibilities exciting. On the other hand, I find its potential uses frightening.
The source of my son's developmental issues has never clearly been identified. Would I like to know what caused his issues? Definitely. A clear causation may bring a measure of peace. At the same time, by knowing the source of his condition, what questions or issues may that raise for our family? If it is genetically based, our son will need to question the ethics of having children of his own someday. Would he want to bring children into this world who may, or may not, face many of the same issues that he has had to weather. Additionally, just knowing that my husband and son both share a minute chromosomal duplication was hard for my husband to come to terms with. For a long time, he felt responsible, even though the doctors don't feel that is the source of our son's problems. If it were clearly identified that one of us was the source of our son's problems, could we find peace with that knowledge?
What will be the application of these new testing techniques? What will expecting parents do with the information revealed by such a test? Would I want to know that my child is destined to develop cancer or a variety of other illnesses, disorders, and conditions? I'm not sure. Do you then live your life in anticipation of the time when these events unfold? Does it make you more diligent or more reckless? As I watched the news report on this new technology, the story of the Tower of Babel came to mind. The people of Babel were so arrogant and pleased with their accomplishments. Are we reaching the point with technology where we are "playing God"? Again, I'm not sure.
Our eleven year old was watching the news with me when they covered the story that I am referencing. His reaction was immediate and surprisingly strong. Upon hearing the story, he said, "Why do they need to know that stuff? What difference does it make? Would some parents end the pregnancy if they thought their baby had something wrong with it?" I replied that yes, some parents may choose the terminate a pregnancy if something were wrong with the baby. We discussed the fact that many parents may have chosen to not have a child like his brother if they had know what life would be like with him. Vehemently, he declared, "That is wrong! Nobody loves life like my brother! Nobody loves people like my brother! Nobody loves ME like my brother! I think he even loves me more than you Mom and you love me more than anyone. He's happy all the time. The littlest things make him happy." And I thought, "Well said son. Well said indeed."
New technology and testing techniques are wonderful. Scientific advancements are awe inspiring. It's the application and the long term consequences of technology that can be frightening. I hope and pray that as these new tests are developed, they are used in ways that will benefit society. Additionally, while identifying problems early may be helpful to some, I also know through personal experience that weathering life's trials has helped me to grow in ways I could not have anticipated. Thank you Lord for your trials.
* My favorite part of Laura Story's "Blessings":
"Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
And what if a thousand sleepless nights
Are what it takes to know You're near?
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst
This world can't satisfy?
And what if trials of this life
The rains, the storms, the hardest nights
Are Your mercies in disguise?"
** http://www.msnbc.msn.com/id/47710985/ns/health-health_care/t/new-testing-could-help-spot-genetic-disorders-fetus/
The source of my son's developmental issues has never clearly been identified. Would I like to know what caused his issues? Definitely. A clear causation may bring a measure of peace. At the same time, by knowing the source of his condition, what questions or issues may that raise for our family? If it is genetically based, our son will need to question the ethics of having children of his own someday. Would he want to bring children into this world who may, or may not, face many of the same issues that he has had to weather. Additionally, just knowing that my husband and son both share a minute chromosomal duplication was hard for my husband to come to terms with. For a long time, he felt responsible, even though the doctors don't feel that is the source of our son's problems. If it were clearly identified that one of us was the source of our son's problems, could we find peace with that knowledge?
What will be the application of these new testing techniques? What will expecting parents do with the information revealed by such a test? Would I want to know that my child is destined to develop cancer or a variety of other illnesses, disorders, and conditions? I'm not sure. Do you then live your life in anticipation of the time when these events unfold? Does it make you more diligent or more reckless? As I watched the news report on this new technology, the story of the Tower of Babel came to mind. The people of Babel were so arrogant and pleased with their accomplishments. Are we reaching the point with technology where we are "playing God"? Again, I'm not sure.
Our eleven year old was watching the news with me when they covered the story that I am referencing. His reaction was immediate and surprisingly strong. Upon hearing the story, he said, "Why do they need to know that stuff? What difference does it make? Would some parents end the pregnancy if they thought their baby had something wrong with it?" I replied that yes, some parents may choose the terminate a pregnancy if something were wrong with the baby. We discussed the fact that many parents may have chosen to not have a child like his brother if they had know what life would be like with him. Vehemently, he declared, "That is wrong! Nobody loves life like my brother! Nobody loves people like my brother! Nobody loves ME like my brother! I think he even loves me more than you Mom and you love me more than anyone. He's happy all the time. The littlest things make him happy." And I thought, "Well said son. Well said indeed."
New technology and testing techniques are wonderful. Scientific advancements are awe inspiring. It's the application and the long term consequences of technology that can be frightening. I hope and pray that as these new tests are developed, they are used in ways that will benefit society. Additionally, while identifying problems early may be helpful to some, I also know through personal experience that weathering life's trials has helped me to grow in ways I could not have anticipated. Thank you Lord for your trials.
* My favorite part of Laura Story's "Blessings":
"Cause what if Your blessings come through raindrops
What if Your healing comes through tears?
And what if a thousand sleepless nights
Are what it takes to know You're near?
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst
This world can't satisfy?
And what if trials of this life
The rains, the storms, the hardest nights
Are Your mercies in disguise?"
** http://www.msnbc.msn.com/id/47710985/ns/health-health_care/t/new-testing-could-help-spot-genetic-disorders-fetus/
Sunday, June 3, 2012
Making Decisions
I've often joked with family over the last month or two that our son finished school in April. Here it is June and the rest of the world just forgot to read the memo. He has a unique developmental pattern that involves a series of developmental bursts that are usually followed by a predictable pattern of regressive behaviors including drooling, stuttering, verbal blocking, increased clumsiness, and behavioral frustration and/or tantruming. It is these regression periods that often leave us in a bit of a quandary. Where do we go from here? How do we help him through this stage and guide him into the next important stage of development?
During these developmental "bursts", it is as if someone has thrown on a light switch. Literally over night, it seems as if he is gaining new skills and new behaviors. We are often blown away by what he can now accomplish that he couldn't previously. It is during these bursts that we experience "familial highs" of a sort. Times are better. Life is easier. He is more content and easier to work with. These bursts involve learning and displaying many new skills that were previously unattainable for him. We are so hopeful and motivated for him to move forward during these time periods. We see the possibility of what could be for him and what his future may hold.
Unfortunately, these lovely bursts are almost always followed by a regression period. These periods are generally first noticed when the drooling begins. He may be six but during a regression period, he will begin "mouthing" everything including his clothing, toys, pencils, etc. It is not unusual for him to come home from school with the top section of his shirt wet from chewing on it or from wiping his mouth on it. NOT a pleasant or hygienic situation. It is also during these lag times that our happy, pleasant child becomes prone to irrational tantrums and outbursts. The slightest redirection or criticism can result in crying, screaming, running around the house like a crazy child. You can not rationalize, reason, or process with him during these periods. His frustration level is always set on "simmer". These are the times when we question what his future may hold. We question what we can and should be doing for him.
During these periods of transition, we are often left asking ourselves which direction to go and are faced with important decisions that need to be made. Do we continue with the current therapies? Are the current therapies sufficient or do we need to pursue different avenues? Are the current therapies necessary? Should we do more? Or less? It's the questions that can drive you crazy. You're never sure what the answers are or if you are going in the right direction. Our current round of questions surround the issue of his speech/language delays. His individualized education program (IEP) at school is for a speech/language disorder. Currently, one of his main issues is his stuttering and blocking. At school, he is receiving speech therapy weekly. Yet, out of school, he hasn't received speech therapy since his old speech therapist left for a new job. Should we have him retested and start him with a new therapist or is this part of his current regression phase? Should a therapist be addressing his low facial motor tone or is this also part of his current regression phase? Are we hesitant to add more out of fear of overwhelming him? Or are we hesitant out of fear of overwhelming ourselves? What is the priority? What is the right decision?
When it comes to parenting, I don't know that there are right or wrong answers. I think the fact that we ask ourselves the questions in the first place, shows that our hearts are in the right places. Unfortunately, the decisions we make have long term ramifications for ourselves and our children. We can only pray that the decisions we make are made for the right decisions and turn out for the best.
During these developmental "bursts", it is as if someone has thrown on a light switch. Literally over night, it seems as if he is gaining new skills and new behaviors. We are often blown away by what he can now accomplish that he couldn't previously. It is during these bursts that we experience "familial highs" of a sort. Times are better. Life is easier. He is more content and easier to work with. These bursts involve learning and displaying many new skills that were previously unattainable for him. We are so hopeful and motivated for him to move forward during these time periods. We see the possibility of what could be for him and what his future may hold.
Unfortunately, these lovely bursts are almost always followed by a regression period. These periods are generally first noticed when the drooling begins. He may be six but during a regression period, he will begin "mouthing" everything including his clothing, toys, pencils, etc. It is not unusual for him to come home from school with the top section of his shirt wet from chewing on it or from wiping his mouth on it. NOT a pleasant or hygienic situation. It is also during these lag times that our happy, pleasant child becomes prone to irrational tantrums and outbursts. The slightest redirection or criticism can result in crying, screaming, running around the house like a crazy child. You can not rationalize, reason, or process with him during these periods. His frustration level is always set on "simmer". These are the times when we question what his future may hold. We question what we can and should be doing for him.
During these periods of transition, we are often left asking ourselves which direction to go and are faced with important decisions that need to be made. Do we continue with the current therapies? Are the current therapies sufficient or do we need to pursue different avenues? Are the current therapies necessary? Should we do more? Or less? It's the questions that can drive you crazy. You're never sure what the answers are or if you are going in the right direction. Our current round of questions surround the issue of his speech/language delays. His individualized education program (IEP) at school is for a speech/language disorder. Currently, one of his main issues is his stuttering and blocking. At school, he is receiving speech therapy weekly. Yet, out of school, he hasn't received speech therapy since his old speech therapist left for a new job. Should we have him retested and start him with a new therapist or is this part of his current regression phase? Should a therapist be addressing his low facial motor tone or is this also part of his current regression phase? Are we hesitant to add more out of fear of overwhelming him? Or are we hesitant out of fear of overwhelming ourselves? What is the priority? What is the right decision?
When it comes to parenting, I don't know that there are right or wrong answers. I think the fact that we ask ourselves the questions in the first place, shows that our hearts are in the right places. Unfortunately, the decisions we make have long term ramifications for ourselves and our children. We can only pray that the decisions we make are made for the right decisions and turn out for the best.
Friday, May 4, 2012
What a Difference a Year Can Make!
Listening to him read aloud, sounding out the words, I am close to bursting with pride. Could this be the same little man who couldn't write his own name; identify any of the letters of the alphabet; or identify items in one-to-one correspondence a mere nine months ago? How the time has flown! How he has grown!
As I listen to him read aloud, stuttering, grimacing, mouth moving, no sound able to come out as he "blocks", I am reminded of how very far we have to go. Will he ever outgrow his expressive language disorder? Will his speech flow smoothly and without effort or will he struggle to get out simple phrases and sentences as everything jams up inside? I'm sure he'll outgrow his developmental motor coordination disorder. Won't he? After all, at nine months he couldn't sit up by himself, crawl, or even use a basic pincher grasp. Now he climbs up in his tree house, kicks a soccer ball around the yard, and zips his own coat. So what if he can't do those tasks as easily as his classmates. He'll get there eventually. Won't he?
As we near the end of the school year, I look back at the worries we had for him starting school. Some of those worries came to fruition. Some did not. We worried about his safety on the playground. On the first day of school, he fell and scraped his face from the tip of his nose to the top of his forehead. We worried that he wouldn't fit in or that the other kids would tease him. Instead, he's invited to birthday parties where his buddies skate over to check on him or show him a new trick or just say hi, even as I have to hold him upright on his roller skates because he can't stand in them without assistance. We worried that he would miss the bus or get on the wrong bus or forget to get off the bus. So far, so good. We worried that entering the school system would change him, that special unique little guy that everyone loves. So far, it hasn't.
His reading skills are amazing. Math skills, so so. His handwriting is atrocious. But better than we expected. He is constantly writing signs and letters, sounding out words, drawing pictures. His interest in school and patience for the routine has blown us away. They tell us he has trouble focusing. We are in awe of how well he has done. They have no idea how his affection for the staff and other kids has translated into genuine effort.
Our little man with his many health and learning issues has almost survived his first year of school in spite of many obstacles and complications. He successfully transitioned from a family day care of six kids to a kindergarten classroom of thirteen or more. Prior to the start of and throughout the school year, he has transitioned through a series of stints with grandparents as I have undergone my different hospital stays, tests, surgeries, and procedures. In addition to his regular class work, he attends occupational therapy, physical therapy, and speech therapy at school. Once a week, he leaves school early to attend occupational therapy at the Janet Weis Children's Hospital. To top it all off, he has survived the transition from his regular kindergarten teacher to a full time substitute after his teacher went on maternity leave. Ironic isn't it, that the year our guy starts kindergarten is the district's first year of full day kindergarten and the entire kindergarten staff are expecting within a month of one another. Through it all, he continues to smile and laugh and make us want to pull out our hair.
We worry about want the future may hold for him. Is that any different than other parents? Don't we all worry about our children and their future happiness and success? If this year is any indication of what he can weather, I think we're going to be just fine. Tired... but fine.
As I listen to him read aloud, stuttering, grimacing, mouth moving, no sound able to come out as he "blocks", I am reminded of how very far we have to go. Will he ever outgrow his expressive language disorder? Will his speech flow smoothly and without effort or will he struggle to get out simple phrases and sentences as everything jams up inside? I'm sure he'll outgrow his developmental motor coordination disorder. Won't he? After all, at nine months he couldn't sit up by himself, crawl, or even use a basic pincher grasp. Now he climbs up in his tree house, kicks a soccer ball around the yard, and zips his own coat. So what if he can't do those tasks as easily as his classmates. He'll get there eventually. Won't he?
As we near the end of the school year, I look back at the worries we had for him starting school. Some of those worries came to fruition. Some did not. We worried about his safety on the playground. On the first day of school, he fell and scraped his face from the tip of his nose to the top of his forehead. We worried that he wouldn't fit in or that the other kids would tease him. Instead, he's invited to birthday parties where his buddies skate over to check on him or show him a new trick or just say hi, even as I have to hold him upright on his roller skates because he can't stand in them without assistance. We worried that he would miss the bus or get on the wrong bus or forget to get off the bus. So far, so good. We worried that entering the school system would change him, that special unique little guy that everyone loves. So far, it hasn't.
His reading skills are amazing. Math skills, so so. His handwriting is atrocious. But better than we expected. He is constantly writing signs and letters, sounding out words, drawing pictures. His interest in school and patience for the routine has blown us away. They tell us he has trouble focusing. We are in awe of how well he has done. They have no idea how his affection for the staff and other kids has translated into genuine effort.
Our little man with his many health and learning issues has almost survived his first year of school in spite of many obstacles and complications. He successfully transitioned from a family day care of six kids to a kindergarten classroom of thirteen or more. Prior to the start of and throughout the school year, he has transitioned through a series of stints with grandparents as I have undergone my different hospital stays, tests, surgeries, and procedures. In addition to his regular class work, he attends occupational therapy, physical therapy, and speech therapy at school. Once a week, he leaves school early to attend occupational therapy at the Janet Weis Children's Hospital. To top it all off, he has survived the transition from his regular kindergarten teacher to a full time substitute after his teacher went on maternity leave. Ironic isn't it, that the year our guy starts kindergarten is the district's first year of full day kindergarten and the entire kindergarten staff are expecting within a month of one another. Through it all, he continues to smile and laugh and make us want to pull out our hair.
We worry about want the future may hold for him. Is that any different than other parents? Don't we all worry about our children and their future happiness and success? If this year is any indication of what he can weather, I think we're going to be just fine. Tired... but fine.
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