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/
Thursday, June 21, 2012
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.
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