Shining Eyes

Who am I being that my children’s eye’s are not shining?

 

more about “Benjamin Zander on music and passion …“, posted with vodpod

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My challenge? Can I live the wisdom taught on this video, “I will never say anything that couldn’t stand as the last thing I will ever say?”

There have not been many shining eyes in my house lately. Marissa feels that since I made her quit her job at McDonald’s and have not let her get her driver’s license that I am no longer shining a light toward an adult life for her. In the past, when freedoms were restricted, Marissa’s behavior changed as she tried hard to prove to us that she was responsible. That has not been true this time. She sees FASD as an insurmountable obstacle. She has lost hope.

What can I do to give her power and still keep her safe? How can I respond to her with God’s perfect love when I am imperfect and tired?

Thank you Barbara of TherExtras for linking to this video!

Tracks in the Brain

When I first started attending home school conferences, there was very little information about home educating a child with a developmental disability. I wanted a process to follow, curriculum ideas and a scope and sequence for educating a non-college bound student. Instead, I found just what I needed in two part lecture by Dr. Mary Ezzo entitled Your Child’s Mind. The title of Part II, Teenage Brain Development, intrigued me. After all, I was parenting a teenager. I went to Part I, Early Childhood Development, frankly because none of the other sessions in that time slot interested me in the least. I am glad I went to both. It was my job to repeatedly teach Marissa the things that were most important for her to know.

Despite all the classes on human development, physiology and pathophysiology that I took in college, I don’t remember a whole lot about brain development. Perhaps I wasn’t listening. More possible is that the instructor didn’t cover it. It seemed that every instructor spent an inordinate amount of time talking about the chemical and mechanical changes that end with a muscle contraction, and a great deal of time on heart, lungs and kidneys. By the time the class schedule got around to the central nervous system, the endocrine system and the reproductive system, the semester was almost over and we crammed 8 weeks worth of information in to 3 or 4 class periods. It is very likely that I dumped anything I did learn soon after passing my licensing exam. My career evolved into my specializing in caring for critically ill adults with cardiac and respiratory problems. All of my continuing education dealt with my area of expertise. Whatever the case, I didn’t understand how the brain developed. Knowing a little about the developing brain comes in kind of handy when parenting a child with fetal alcohol syndrome.

The nerve cells are specialized “messenger” cells which transmit Information from one neuron to another neuron across a synapse, a small gap separating the cells. It seems that when we are young children we have way more synapses than we need. Animal and human research has demonstrated that as we age we undergo massive pruning of excess synapses. If you believe in a Creator, you might suspect that synaptic pruning is not random. You would be right. It seems we keep the synapses we are using and prune those that are deemed unimportant.

The other thing that occurs during childhood is that the brain undergoes a process called myelinization. During myelinization a fatty substance covers and protects the nerve and acts like a conduit, ensuring that messages sent by the nerve aren’t lost en route. The brain continues to develop until a person is in their mid-twenties. Remember all those dumb things you did prior to your mid-twenties. Well, that is because your brain wasn’t done yet. The very last area of the brain to undergo myelinization is the prefrontal cortex. That is the part of the brain that sits right behind the forehead. It is one of the areas of the brain that seems most susceptible to damage from prenatal exposure to alcohol. The prefrontal cortex is important in judgment, critical thinking, creativity, problem solving, moral decision making, planning, impulse control and abstract reasoning. My near adult with FAS and a normal IQ has difficulty in each of these areas. But, that part of her brain is still developing and won’t be done for another ten years!

Somehow I had forgotten this wisdom. It was pushed to the back of my mind. I was concentrating on the problems of today and not remembering that Marissa’s future hasn’t been written yet. She is still under construction. My hope was renewed in the most unlikely source, my Creole Made Easy book. I hadn’t really done the reading exercises in the book. Creole seemed impossible to learn and I was counting on looking up single words and word phrases. Luigi, Beverly’s interpreter, taught me that all languages are easy as long as you need them. I know way more Creole than I ever thought I would. Anyway, I was flipping through the book recently and one of the reading lessons caught my eye. There is no author identified. I am not sure if this is a Haitian proverb or the original thoughts of Wally R. Turnbull.

Each time you do a thing, it leaves as it were a track in your brain. When you do the same thing many times, the track becomes deeper. It is for that reason every thing you are accustomed to do, you do more easily because that thing has its road all traced in your mind.

You are able to walk without your needing to think that you are walking. Why? Because you are accustomed to walking for so many years, your brain gives your members the order to walk without your knowing how, only you want to walk, and you see you are walking.

But, when you were a child, it was not the same thing. You did not have such tracks prepared in your brain. Wanting to walk was not sufficient. For each action which is in walking you were obliged to give your head an order.

Or, if you like a shorter version, Sandi of Titus2Woman writes in a recent Simple Woman’s Daybook, “I am thinking about how we become what we practice.” Sandi is very wise. 

It is my role to stay engaged and to help Marissa do the things that will create tracks that will lead her into a responsible adult life. Marissa’s brain isn’t finished yet. My Dad taught me that love is doing the right thing even when it is hard. Raising a teenager with FAS has been hard, harder than I ever imagined it would be. Love doesn’t give up hope. Love, “bears all things, believes all things, hopes all things, endures all things.” (I Corinthians 13:7, NAS)

My Husband Is So Smart

We are in the process of changing the locks on our home. We moved in 5 years ago and every door in our home had a different key. I hated the locking mechanism because you could easily open a locked door from inside the home but when you walked out and closed the door it remained locked. I cannot tell you how often I locked myself out. We installed a locking key box in the garage and put a key to the door leading from the garage into the kitchen, but that key must have gotten a little bent. The last time we tried to use it, it didn’t work. We were locked out of our home at 11 o’clock at night. We had to break in to our own house. So, we are upgrading so that when you open the door from the inside, the door unlocks and all the keys will be the same, identical, there will be no difference! Novel concept indeed…

David and Beverly have been “helping” Dad. Did you know that a 2- and 4-year-old aren’t really great helpers when you are doing something that has small, easily lost parts? I told them not to touch twenty times before Ron fixed the problem. He gave them an old lock of their own. I could have said, “Pa touche,” a thousand times and it wouldn’t have worked nearly as well as allowing them to explore. Beverly and David are schooling; they are in “Home Repairs and Improvements 101.” Beverly has already learned the difference between a flat head and a Phillip’s head screw driver and has learned to turn the screw counter-clockwise to loosen it. She has naturally great mechanical skills. (Irritatingly, she was also born organized and informed me this morning that my laundry was “plen.”)

When I came downstairs I had intended on just posting a photo of the kids. But, then I read Kari’s blog entry today, Beyond Consequences - running away, and realized that Ron had “tried differently.” His alternative was creative and smart. The kids are happily doing exactly what their parents asked them to do. No voices were raised. And, most importantly, no parts were lost.

Our own fear keeps us in a constricted place, locked in from seeing other alternatives. Fear keeps us in a loop of trying harder, “upping the ante,” and driving more consequences in order to get our children to behave and to be compliant ~ Beyond Consequences

People raising children with FASD are supposed to know this. One of the mantras of people involved in raising and caring for children with FASD is, “Try differently not harder.” Why is creative parenting so much harder when the stakes are higher? I think that the author of this article hit the nail on the head, fear.

For God has not given us a spirit of timidity, but of power and love and discipline. ~ 2 Timothy 1:7

The problem is, of course, that I know this verse. It is the implementation I am having trouble with.

Failed Flight

Two years ago Marissa and I started a several year course designed to teach her to fly somewhat independently. Marissa has Fetal Alcohol Syndrome; the statistics look pretty grim. Very few, only about 1 in 10, adults with FAS successfully live independently and do not have trouble with employment. But, I began to imagine a future for Marissa where she could live on her own with only minimal assistance. I don’t believe she will ever be able to independently manage her finances. I still have that goal for her. In my mind, I began to view Marissa as a bird, someone born with wings and intended to fly. I am afraid that prior to that, I viewed Marissa more like a caterpillar who would never, ever become a butterfly, an angel that never gets her wings. FAS had somehow destroyed her ability to develop wings ever. But, teens and adults with FAS need the same thing all of us do. They need to grow into the person that God created them to be.

A month ago today Marissa started a job at McDonald’s. I have been thrilled and proud to watch her responsibly work toward learning to be a valuable team member. She has made sure she was on time to work. She has communicated scheduling needs with her boss. When a misunderstanding between her and management meant that she had to choose between an activity she wanted to do and work, she chose to work. She has also learned to respect the managers that had high standards. She has not been fired. But, her first flight into the world of employment is, none the less, grounded.

On Tuesday night Marissa did something incredibly stupid and dangerous. God has placed a hedge of protection around Marissa. I was awakened late at night and knew that something wasn’t right. Marissa was not at home. I was given the Wisdom of Solomon and found her quickly. The people she was with were all boys she works with. I didn’t sleep Tuesday night. I worried. I prayed. I cried. Wednesday, I told Marissa that I would not consider her consequences. I was just too tired and couldn’t think right. Marissa and I cleaned her room together. Working together is actually very healing. I slept Wednesday night and woke up with the following question running through my mind, “If Marissa had done this with teens she had met through any other activity except work, would she still be allowed to do that activity?” The answer is clearly no. Marissa turned in her resignation. I let her complete the schedule that is currently posted. I didn’t want her to burn bridges and not be able to get a recommendation. But, she is coming in for a landing. She has also been restricted for one month. I sometimes wonder what good giving consequences to a person with FAS does, but I have come to realize that life is all about a series of consequences for your actions. And, the truth is Marissa does learn from consequences, just not very quickly.

Marissa couldn’t handle the social pressures of work. She couldn’t consistently make good choices in a social situation. I don’t know if I am doing the right thing. The scary truth is that Marissa will be 18 in about 18-months. She will be legally considered a competent adult. Having good work skills is necessary to see Marissa become mostly independent. Marissa’s IQ is normal. She looks to the world like a competent near adult. When she turns 18, I will not be able to have her declared incompetent. She is not eligible for any services for the developmentally disabled. The diagnosis of FAS doesn’t qualify a person. Almost every state uses IQ to determine who needs assistance. Kind of my rule of thumb has been, “Marissa will have every freedom for which she can responsibly handle.” Marissa could not responsibly handle the freedom that came with working outside the home. I am going on gut instinct here. I pray that the feeling I have about how to proceed is from God and is not a decision I made in fear.

Many people, those who have never raised a child with FAS, will think that I should just give Marissa age appropriate freedoms. She is going to be exposed to people who wish to do her harm. She is vulnerable. She can make those mistakes while she is at home where her Dad and I can walk her through the consequences and help her to learn how to cope. Sadly, Marissa doesn’t learn from consequences the first, second or even third time. The other truth is that her physical safety is more important to me than her becoming independent by the arbitrary age of 18. My prayer is that keeping her home in a controlled environment will allow her to mature a little before she faces those choices again. Perhaps, just perhaps her wings need a little more time to become strong enough for a solo flight.

Perhaps Life Is Becoming Dull

Hello! I haven’t gone to Haiti to get my kids. Maybe I will hear something this week.

My mom was discharged from the hospital on Sunday morning, in her right mind! She had a CT scan and and MRI that were both normal in that they couldn’t explain her mental status changes. She does have a very bad sinus infection. She had a carotid doppler to check out how well blood flows through her carotid artery. She also had an EEG to see if she was having seizure activity. The last two tests haven’t been read yet. So, she was discharged with orders that she couldn’t drive until she followed up with the neurologist. With all the testing and prodding, the doctors also found a urinary tract infection. Geriatric patients sometimes have mental status changes as a first, even primary, sign of a  UTI. Could my mom be considered a geriatrics patient? Certainly, not. Why, that would mean she was old! I am not emotionally prepared to accept this so I won’t.

My grandfather’s blood pressure is stable. He is out of the ICU. He has been diagnosed with hepatolithiasis, essentially he has stones in his liver. One of them escaped his liver and is blocking the flow of his pancreatic enzymes. He was hospitalized on Thursday with pancreatitis and a systemic inflammatory response. I am not quite sure what can be done about his underlying problem. The doctor might try a minimally invasive procedure with sedation. Or, perhaps his physicians can try lithotripsy. I am not sure breaking up the stones will work. My grandfather is medically fragile. He uses an electronic chair because he is very weak. I would describe him as frail. I would not describe his as cachectic or emaciated; he is a large man. I just don’t know if the shock wave will be able to travel through his body and arrive at the stone possessing enough strength to do the job. I suppose now that he is stable, the physician will need to develop a treatment plan. Treatment plans don’t get made on the weekends.

I have a worry! By way of background, Marissa was asked to the prom and she said yes. She didn’t tell me at first because she wanted to go and was afraid I would say no. I didn’t really get the chance to help her identify all the steps she needed to take to go from saying yes to going to the prom. She started thinking of many of them on her own, but much like “clean your room,” the task was too big for her and created paralyzing anxiety instead of action. She cannot break a big job into little jobs. She will probably always need someone to help her do that. I am usually that someone, but there was that sticky worry that she might be told no. So, she didn’t ask me until it was too late. The boy who asked her rented a tux and was looking forward to going to the prom. Marissa didn’t even buy a dress. The Wednesday before the prom, somehow it was decided that they wouldn’t go since Marissa didn’t have a gown. This boy isn’t talking to Marissa. Marissa doesn’t understand why. Anyway, does anyone think it was time Marissa’s FASD became transparent to her peers? Marissa doesn’t want anyone to know, but it is long past the time that she could easily ”pass” for neurotypical. When people don’t understand her, they interpret her behavior based on their own reality. Why would a girl tell a boy she would go to the prom and then not plan to go? Well, a shy, awkward young man might come to some very wrong conclusions.

Friday Marissa and I went to see Expelled: No Intelligence Allowed. As I reviewed the concepts put forwarded in this documentary, I wondered how a Christian (and a home schooler who selects her daughter’s science curriculum) should respond to the animosity in the science community toward people who believe in a designer. My basic thoughts are that science should be taught as science and philosophy should not be taught as science. Science classes should focus on those things that are observable, measurable, testable and repeatable. How life began is none of these things. On a more universal level, I do not think Christians should continue to try to force school districts to add Creation or Intelligent Design to their science curriculum; they aren’t observable, measurable, repeatable or testable either. Speciation, adaptation and natural selection occur and can be observed in nature. Curriculum that speculate as to how life first began or whether or not speciation, adaptation and natural selection account for all life on this earth belongs in the area of philosophy and religion. Christians accept that God is the Creator by faith. Atheist accept that life occurred by chance by faith.

In my opinion, the fight has never been what happened to start life. In fact, the argument is not really about science at all. I have a masters degree in nursing. I took two semesters of chemistry, microbiology, human anatomy and physiology, advanced human physiology, and pathophysiology to get my undergraduate degree. I took graduate level physiology classes to get my masters. My nursing classes were heavily based upon the sciences. I was a nurse educator. Darwinism was not an issue. In my entire post-high school academic career, there wasn’t one test question relating to the theory. Even if evolutionary Darwinism is true (and I don’t believe it is), it is a slow process, a process that I won’t observe occurring in my patients. I could understand all of the concepts taught in those classes without ever wondering, “How did we get here?” I believe the main issue is, “What is the nature of man?” In Evolutionary Darwinism, man is a cosmic mistake without inherent value; a person’s value is directly tied to what he or she contributes to society. Man doesn’t have free will. He most certainly wasn’t endowed by his Creator with rights. Ethical decisions are focused on what is best for society and ignore the individual. I cannot embrace this view of man; I find it hopeless. Atheists find real hope in this view of man though. I think Christians sometimes imagine that this is because atheists want to sin and misbehave without answering to a higher authority. In some cases, that might be true. But, I think the bigger draw to this worldview is that, if evolution is true, mankind is still evolving. What hope is there for an evolved man? We could create Utopia. Sadly, history shows us Utopian societies don’t stay that way. A man-centered world simply doesn’t have an adequate way to deal with evil. Oops! There I go looking to the past instead of a perfect, evolved future again. We want the same thing you know. Christians look for a perfect future too, but not by mankind saving itself. Our perfect future comes when Christ returns to rule and reign on this earth, a one-world government that is available for all willing to submit to Christ’s authority. No one will be forced to be a part of the Kingdom through military might, coercion or a corrupt government.

Last, I was surprised by the interview with Richard Dawkins. He is supposed to be a great atheist apologist. Rule of thumb: When debating intellectual ideas, it is not nice and, more importantly, does not strengthen your argument to call people who don’t think like you insane, stupid and ignorant. I would never, ever tell an atheist he or she was insane, stupid or ignorant. Most of them are not. In fact, I would never even tell them they were going to go to hell. If someone doesn’t believe in a Creator, I will tell them why I do. If someone believes in a Creator, but isn’t sure that the God of Abraham, Isaac and Jacob is the Creator, I will tell them why I think that the Judeo-Christian God is the Creator. If someone believes in the Judeo-Christian God, but does not believe Jesus is the Messiah, I will tell them why I believe Jesus is the Messiah. I am prepared to tell people how God has worked in my life since accepting Jesus as my Savior. But, it is simply not my job to change their mind. Don’t believe me? Read your Bible. I am not prepared to sit in judgement over anyone.