Tuesday, September 27, 2016

It's the little things

Take a look at this.


That would be my desk. Notice how you can see actual desk surface there on either side of the computer. Notice that there are not ridiculous amounts of papers and books of all kinds piled in not-so-neat piles across the entire thing. You probably can't notice, but that file holder on the left is holding only paperwork that is current and needed, as opposed to things such as financial aid paperwork for children who graduated from college nearly two years ago. Notice the file folder on the right. That is my working to do list, where I write the things I need to take care of and which holds the papers I need to do those things. You can also see the checkbook next to the computer which is currently up-to-date.

And that noise you hear is my happy deep breathing every time I look at it.

It was starting to feel as though my desk represented what my brain looked like. It wasn't pretty. And it really wasn't functional. Every time I looked at my desk, or thought about it, or pondered the things it contained that I needed to do, I could instantly feel my body kick into anxiety mode. It's not a terribly pleasant way to live. Sunday I felt as though I could finally tackle it... needed to tackle it. I spent the entire afternoon sorting out. J. made dinner so I could finish.

I don't think my desk has been this clean and organized for over a year. It's amazing we were able to complete two adoptions, because I spent nearly a year in a panic that my cluttered desk and state of mine was going to cause some important document to go missing.

This feels good. Really, really good. If you have a likewise disastrous spot in your house and psyche, I highly recommend deciding to tackle it. I slept so well last night, I think the neat and organized desk played a huge role in that.

Monday, September 26, 2016

Our new world of abbreviations

Y. and I have had a big day driving hither and yon to get her set with her new AFO's. For those of you who are familiar with this particular term, you can move along because this will be old hat. But I also know that I have many readers who do not live in the assistive devices world, and it's always good to learn something new. It is also a bit self-serving in that at some point those of you who know us will see Y. wearing her new AFO's and it will perhaps save us from answering repeated questions. (Not that I mind answering questions, particularly when my children are not present, but I will admit the same question over and over does sometimes grow old.)

AFO stands for Ankle Foot Orthosis, or foot and ankle brace. Here is what a pair looks like.


These are the pair which were made for Y. and which we picked up this morning.... bright and early at 8 am. ("You know I'm not a morning person," Y. reminded me.) They seem to fit pretty well, though they are not making her happy. It turned out to be great accidental timing in that this afternoon Y. already had a physical therapy appointment on the calendar. I was thrilled to be able to bring in the AFO's, new knee socks, new sneakers (because these things do not fit in all shoes, and I'm not entirely sure what we will do for dress shoes), and let the PT help get things sorted out.

These particular AFO's are adjustable in that they can either have a hinge at the ankle or it can be fixed to be rigid. This is also something the PT was able to adjust and make sure it was correct. What they do is to help hold Y.'s legs at the proper angle while also providing a little more support than she has standing alone. The therapist was pretty happy with what she was seeing when Y. walked with them. Y. was not terribly happy, but they are not the most comfortable of contraptions. We will slowly work into her wearing them most of the day, adding an hour each day until we are there.

What the people who know about these things are hoping is that the AFO's will help train and build up the appropriate muscles so that eventually Y. will not need to wear them at all. In the meantime, we will try to make the process as palatable as we can for Y.

So there you go... you now all know about as much as I do with the new world we have entered.

Saturday, September 24, 2016

The blessings of hard

I just wrote to a friend that I believed that every family should be blessed with a child that struggles, whether because of physical, cognitive, or emotional challenges. I know that sounds crazy in a world that strives for perfection and ease; a world that is so focused on outward appearances. Where does the idea of being blessed by something hard fit in?

I've been thinking about this idea a lot recently. I've written before about how certain parenting challenges have changed me. In the words of E. Nesbit, these challenges have rubbed off some of my rough edges. They have made me a nicer, more understanding, more accepting person. (I fully realize that there are more rough edges that need to go.) I thought I was compassionate and understanding when life was easy. I was wrong.

Here is the root of the so called Mommy Wars. Too many people think they're compassionate and understanding, but they are wrong because they haven't lived through hard. One of the most compassionate places I frequent on the internet is the group for parents who are parenting hard children. You might think that these people would be so worn down by their experiences that they would have little patience or time for anything but the raw emotion that comes with living through your nightmares. And sometimes that's true. But more often than not, what this group of parents excels at is compassion and understanding. It is a place where people can share the worst... the kind of thing that you don't share with anyone because it sounds too bad... and instead of making the parent feel worse, they rally around and support that struggling parent.

If more of us had more of our rough edges smoothed, the world would be a nicer place. It would mean that a struggling mom would have just a slightly easier road, because worrying about how she is perceived by others just wouldn't be a concern.

If you have ever wondered how a special needs parent does it, understand that we are different. We are different from parents who do not have this experience. But also please understand that we were not different before we began this journey. We didn't think we could do it. We didn't understand how others did it. For many of us, our first experience parenting a child who struggles was not our choice, but came in a child who arrived that way; a child we were expecting to be typical. And we were changed. We began to see things differently. We began to see people differently. We began to see life differently. Things that used to be important, suddenly weren't, and little things we used to take for granted became big deals. Sure life was in some ways harder, but it was deeper, richer, and paradoxically easier. When you stop living your life to impress others, there is incredible freedom, and for many parents of children with special needs, worrying about impressing others was quickly jettisoned. There just wasn't time.

Yes, we are different, but only because we became that way through our experiences. The experiences came first.

Back to that struggling mother, for whom this is all so new and hard and scary. You will get through it. Your children will get through it. And you will be changed. While much of raising hurting children is hard, the unexpected gift is the new compassion and freedom which will be yours.


Friday, September 23, 2016

Autodidacts you should know

I have a soft spot for autodidacts. Those somewhat compulsive learners (and in my experience compulsive learning is a definite trait) who cannot be defined by degrees or schools attended. This could be because I count myself among their number, but also because to my mind, autodidacts exhibit the best of human learning and education. It is self-directed, done for the sheer knowledge gained and not for grades, and is egalitarian. You don't need an exclusive school, a library card will suffice.

Unbeknownst to me, I included two pretty amazing autodidacts in our school schedule for the year. I'm not sure how fascinated my children were with them, but I am. I've already found one adult biography on one, and would love to find one for the other. Because I really need to know more about both of them.

Who are they?

Well, the first is Margaret Morse Nice. Bonus points to any blog readers who know who she is before you read the rest of the post. It's a shame that she is not better known, because from what I've read, she was pretty darn amazing. I only happened across her because in my book addiction, I bought a discarded library book about her one day at the library years ago. There it sat on my library shelves, and amazingly it survived a couple personal library purges, because I don't recall ever having read it to any child. As I was planning the school year, I came across it again, and since the title was Bird Watching, it seemed like something that would fit in with our bird study. Last week was the week I had it scheduled, so I read it to everyone.

Wow. Just wow. This woman was ostensibly 'just a housewife'. She had a bachelor's degree in French, but then married and had five daughters. But she always loved birds and always enjoyed studying them. So that is what she did as she raised her girls and kept her house. Over the course of her life, she managed to do important research, often making important scientific discoveries that changed the course of a species' wildlife management plans. By the time she died, she had published 7 books, 250 journal and newspaper articles, and 3,133 reviews of other scientists' work. I find her inspiring.

Then this past week, we read about Benjamin Banneker. I am now embarrassed to admit that while his name was marginally more familiar to me than Margaret Nice's, I'm pretty sure that I couldn't have told you why his name was familiar. I planned him into our school schedule because on my giant list of books from various time periods, he was there.

Have you heard of him? Once again, it's a shame that more people don't know him. He was an African-American man who lived during the time of the American Revolution. He was born into a free family who owned a 100-acre tobacco farm. He had limited formal schooling, but over the course of his life he taught himself an amazing amount. He built a wooden clock, copying and carving the gears from a pocket watch which a friend had loaned him. He taught himself mathematics and astronomy, as well as surveying. He was one of the surveyors who helped to lay out Washington D. C. Possibly his most notable achievement was to publish his own almanac. He did all of the calculations for the sun rises and sunsets, moon phases, eclipses, and tides. Eventually a Quaker publisher agreed to print the almanac. Mr. Banneker also wrote a letter to then Secretary of State, Thomas Jefferson. Mr. Banneker was extremely interested in current events and in the Declaration of Independence. In his letter to Mr. Jefferson, he asks the writer of the Declaration why, if all men were created equal, was slavery still allowed in the new United States. Mr. Jefferson did reply, but in the children's biographies I read, were only small snippets of his reply. I am curious as well, how Mr. Jefferson worded his answer.

In many ways, Benjamin Banneker reminds me of Nathaniel Bowditch. (If you haven't read Carry On, Mr. Bowditch, you really, really need to!) Both were brilliant mathematicians who were self-taught. Not only did they learn math, but they branched out into other subjects as well.

I love to share people who love learning for the sheer joy of it and who don't let anything stop them in the quest for that learning. People do not need to be coerced into learning. Discovering the world is something that should come naturally to all of us. If any educational system steals that joy and makes learning drudgery, then I think we need to seriously reconsider that educational system.

Thursday, September 22, 2016

In which P. gets some high school credit hours... or why it's always a good thing to read your car manual

P. and I had a little adventure yesterday. I headed out to pick her up at the stable after her riding lesson, thinking we would easily have enough time to stop by the store and pick up some cat food before I needed to teach a piano lesson. And we would have, if the temperature gauge on the van would have behaved itself. I'm tootling down the road when I notice the gauge is heading toward the red. Even I know this is not good, so have the internal discussion of what to do about this. Stop and not get P.? Then how would I let her know to take the bus. (She had my phone, which meant I didn't have my phone. But it turns out it wouldn't have mattered since it was out of money. Yes, we live in the dark ages over here.) Do I keep going? Am I going to wreck the engine? Of course, I'm still driving as I ponder all these possibilities, so in the end I decided to continue on the stable and revisit the problem then. (I know, all you car people out there are just smacking your heads at the moment.) As I pulled into the parking, the gauge was very definitely in the red and I was happy to be able to stop the van and turn off the engine.

I am not a car person. (You probably already guessed that.) I have no desire to learn about cars. None. Zero. Zilch. I'm quite happy to not have any idea how they work, other than how to make them go and how to fill them up with gas. That is what AAA is for. And husbands. And children. Which is why J. received my first phone call after arriving at the stable (after refilling my phone with money), asking him what we should do. He coached us through opening the hood (P. took care of that), and filling the coolant reservoir with some water we got from the stable (P. took care of this as well.) When I started the car again, the gauge seemed to be hovering where it normally lived, so we decided to head for home. The cat food could wait.

This was great for about four blocks. By this time we were on a fairly busy road, at a time of day when the only thing traffic does is get heavier and heavier. I'm sitting in the van, watching the gauge climb higher and higher, knowing that this was not good. And then I started seeing a new light appear on the dash board. One I had never seen before. This bright red light said something along the lines of, "ENGINE LOSING POWER!" or maybe it was, "HEY STUPID, YOUR CAR IS GOING TO DIE WITHIN THE NEXT TWO MINUTES!" Whatever it was, we were very clearly not making it home and I began to think we wouldn't even make it off the very busy road. At any moment I was going to become that person whose stalled car is responsible for a miles long traffic jam as people tried to get around me. I had just enough presence of mind left (and a lull big enough in the traffic) to get to the right hand lane, hoping to make it to a side street. That seemed reasonable except there was a red light up ahead and though I could see the side street, we weren't moving towards it. Meanwhile, the engine sounds more and more as though it has signed its will and merely has to take its last breath. The small part of my brain that is not panicking decides that turning off the car at this light might just forestall the engine's inevitable demise just a few minutes longer. It worked! I had no idea whether or not the engine would start again once I turned it off, but it did, and we inched along to the side street and were able to park.

Phew.

Lucky J. got another phone call from me. Poor guy, being the first person I spoke with after this little episode, he got the not-so-happy wife for a moment, but since he is also the calmest person I know, he managed to talk me down from the ledge. (The UN just doesn't know what they are missing here. I think J. would be an excellent negotiator for them.) Thankfully, B. was in J.'s office because he needed to borrow the car to go teach a swimming lesson. The pool was very close to where we were parked, so he agreed to stop and pick-up some coolant and drop it off to us before heading in to work. J. also made sure that my piano student knew I wouldn't be making an appearance.

Through all this, P. was completely calm; you would have thought such things happened to her everyday by her demeanor. She is completely unflappable. While we were waiting for B. to arrive, she decided to clean out the front of the van from all that accumulates up there. She threw out garbage, organized my first aid kits into one, and straightened everything up. Once she had done that, she moved on to the door well where she happened across the manual for the van. (Imagine. I sort of knew it was there. I just don't think about it.) I've mentioned before that P. actually likes cars and is interested in them. In fact, she is working on an automotive course that I found for her. So she sat and read the section of the manual about the coolant system. By the time B. arrived with the coolant, she had figured out what needed to happen and how to do it. My contribution was turning on and off the van and making a funnel for her out of a cup that was in the garbage. (These were incredibly vital and important tasks, I'll have you know.) Once she had gone through all the things she found in the manual, we let the van idle a bit, and once P. checked some tubes that were supposed to feel like something, she pronounced it good, slammed the hood, and we went home.

The trip home was uneventful. I like uneventful. And I still have no desire to understand how a car works.
________
I wanted to share one more thing with you from this morning. I decided to try another activity with R. that I had tried last spring and then put away again. It was just beyond her ability and understanding. We had seen some gains recently and I thought it might be worth a shot. Here's what she did.


I know this doesn't seem like much, but truly, R. could not manage this six months ago. Today, she was able to follow the lines without lifting her pencil and be pretty darn accurate with her tracing. Six months ago, this totally baffled her. Today, she spent 45 minutes tracing lines on different activity sheets that I had.
___________
Edited to add... J. took the van in today to the car guy, having to stop every little bit to let the engine cool off on the way. Turns out it was the water pump. We now have a nice new water pump and driving should go back to being uneventful.

Wednesday, September 21, 2016

Let's talk about the Migratory Bird Act

I know, it's an odd thing to write a blog post about. It's also an Act that I never anticipated bumping up against. I don't go out and collect wild birds or their nests or their feathers, so why should I even think about it, right?

Let's back up and take a look at that osprey that is currently living in our front hall.



He's pretty cool, huh? Many of the children are completely enraptured with him. He also happens to be one of the few birds who is not covered under the Migratory Bird Act, and is why he is allowed to come to visit our house temporarily. I wonder how he feels about being one of the few birds left out? I don't know the actual number of birds not included in the treaty, but going by the exhibit birds available for check-out through the Harris Loan Box program (256 birds, by the way), there are exactly 12 which we can check out. We can check them out because they are not covered under the Migratory Bird Act. Evidently, unless an institution is public, such as a public school (or a Magnet School, which is a bit fuzzy in my opinion), these birds or anything related to these birds is not available. Yes, even though they are owned by the Field Museum and we private schools are merely borrowing them.

I did clarify with them. More than once. In fact, sometimes I feel more akin to Minnie Driver's character in the new TV show, Speechless, than I want to admit. (You need to watch it. I've already seen the pilot thanks to Amazon Prime.) There is one scene where the character is informed that the new school has already had a meeting to discuss how they will 'handle' her. I felt just a little bit this way when I went to pick up our bird. When I said my name, there seemed to be one of those pauses where the person I was talking to mentally says, "Oh, you're the one." And I did ask my private/public school question again. The answer was the same, for better or worse. No, not even a chi-chi private school can check-out birds and related items covered by the Migratory Bird Act. It probably also tells you a little about my general cynicism level that I still have trouble believing that a school, say North Shore Country Day or the Latin School or Francis Parker would be turned down if they came knocking. Because here's the thing. In Illinois, we have some pretty excellent homeschooling laws, and we are all considered private schools in the eyes of the government. I was all set to create my own set of school documents so I could bring home some of the experience boxes and birds, which, I might add, was the whole reason I paid for a Loan membership this year.

It just seems to me that this was not the intent of the law. I am not a lawyer so I do not have any idea what kind of flexibility this particular act allows in regards to something like this. I know that it is probably a windmill that I can tilt at all I like and will never fall, but still, it sticks in my craw a bit. (Yes, pun intended.) I think what peeved me the most is that the Harris staff didn't seem particularly concerned that this was a problem. A little less of  the too-bad-so-sad attitude and a little more genuine sympathy would have helped.

Tuesday, September 20, 2016

Fear and Learning

You would think things like this wouldn't surprise me anymore, but either it's just surprising, or I have significant short-term memory loss. Let's just go with surprising because the other doesn't sound fun.

Today, H. and R. had an appointment with the neurologist to go over the results from their EEG's and MRI's. A brief digression. The short explanation of their appointment: their brain's are very weird. I saw the pictures. They're weird. The doctor was actually amazed at what they can both do having seen the pictures of their weird brains. But that's neither surprising nor what I'm going to write about. I want to write about something that happened before we even left for the doctor's appointment.

We had told the girls the night before that they had doctor's appointments today. In my adult brain, this was hardly news. It was the neurologist which is a sit-and-talk appointment. The only reason I even gave it a second thought was that the office was an hour away, so it would take a chunk out of the afternoon. I think this is why I was so blind-sided this morning during our school time.

There were a couple of instances where I had a conversation with H. that just seemed off. She clearly was not tracking with what I was saying, and was just 'off'. This feeling continued when we sat down to do work during her time with me. Things that were easy and enjoyable last week, were suddenly completely baffling and upsetting. It was so bad that at first I thought she was having seizures, but that didn't seem to be quite the case and she could still communicate with me. Having learned long ago that trying to do anything productive when she is in this state is fruitless at best, I opted for a completely different exercise I knew she could do. Once we had done this a bit, I started to ask her questions again, trying to figure out what the heck was going on.

After much coaxing, H. was finally able to identify what was bothering her. (And do not dismiss the hugeness and importance of her being able and willing to verbalize what is wrong. It is a new found skill.) She took a deep breath and blurted out, "I don't like surgery!" and burst into tears.

The light bulb (finally) went on in my head. We were driving to a doctor's appointment and she was suddenly fearful that it wasn't just a doctor's appointment, but was a trip to the hospital for surgery. Yes, last night we assured her this was an easy appointment and involved no needles, but clearly she did not believe us. So we talked for a while and I assured her once again that this was an easy appointment and no surgeries were even scheduled, much less in the plan for today. We practiced her touching her nose, which was the hardest thing which would be asked of her at the appointment, and I could see the fog lift from her brain.

The only thing wrong with her brain and cognition this morning was that she was afraid. Terrified, in fact. This feeling was so overpowering that nothing else was working and to her it didn't matter. I could have brought in trained monkeys to illustrate the lesson and it wouldn't have mattered because that would not have dealt with her fear.

Fear is an extremely powerful and overwhelming emotion. It is also pretty irrational. At no point did we even breath the word surgery, but the fear was there, none the less. It makes me wonder how often a child is considered slow or oppositional or lazy or any other negative description for a child who does not grasp something quickly or tow the line. There was nothing wrong with the functioning of H.'s brain this morning, thought that is what I thought at first because the behavior was so extreme. The only thing wrong was the fear that completely took over and consumed any rational thought.

Being anything but happy is still an ongoing learning process for H. Even after her little breakdown about surgery and my reassurances, there were several times when she wanted to clarify something. "You still love me when I cry, right, Mommy?"

"Yes, of course, I do , H. Very, very much."

"I love you, too, Mommy."
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