Thursday, September 29, 2011

Specifically

As we wait for my daughter's chemistry to adjust itself from the meds increased (or stopped)  a few weeks ago, I find myself praying very globally and very specifically.

When situations arise that are very rough, I pray, "Please, God.  Please, God.  Please, God."  I have no other words, only the feelings of being overwhelmed, impotent, at the mercy of skewed logic.  At their worst -- and if I'm alone -- I start singing the hymns that remind me that I can "cast all my anxiety on Him":  "Sweet Hour of Prayer" comes first, though I usually choke out the words on desperate sobs and have to sing it a few times through before I believe it, trying all the while to breathe.

Just now, however, I found myself praying quite specifically.  My daughter is doing her homework (a good thing, really), but the assignment she's finishing is the last two of six tutorials on a CAD software program that she will use throughout the school year.  The software, in my opinion, is not meant to be used by children, and the tutorials seem to leave out some vital steps -- or at least pertinent helpful hints.  Oh, and there are glitches and patches and fixes, but only if you know they are glitches and not missing steps might you think to ask if there are patches or fixes.  And if you ask, you may or may not get the fix you need.  (We went through this once before when my son was in the same class three years ago.  He barely made a passing grade on any piece of an assignment that used this software.  At the time, I thought it was just him -- he doesn't really like to follow the directions and tended to skip steps -- but glitches are glitches.)  So now, as my daughter's frustration mounted and the growling began, my stress levels rose, and I prayed, "Please help her solve this.  Please help her be brilliant.  Please help her find the error, identify a solution, solve it, and move on.  Please help her to stay calm.  You are God.  You can do this."

Again, as there is a moment of peace in a prayer answered, I will return to the global, "Thank you, God!" and hit Publish.

Cemetery

Today I went to visit Matthew's grave.  I go about once a month for my friend, who has to be out-of-state for her husband's military assignment.  I didn't go before she moved away; I never felt the need to.  I always thought of Matthew as being in Heaven.

Two things struck me today.  The first is that I felt so sad when, as I was winding my way through the pretty grounds, I recognized Matthew's grave from far off.  It just seems wrong, somehow, to visit him there and to be so familiar that I can spot his little headstone and bench from around the bend in the cemetery.  Yet at the same time, I was comforted that I could see it, know where I was, know where he was, because, despite my wishing it were different, this is where he is on earth, and I want to visit him.

The other thing hit me tonight as I uploaded and forwarded the photos I took for his mother:  I don't remember Matthew by the photos of him.  I think of him as the photos I've taken of his grave since I started visiting in June.  That is disturbing.  I don't like it.  So I called up my "Angel" folder and looked at the pictures of him that I gathered that first year:  Matthew alive, his eyes open; Matthew alive, being held by his father and prayed over by friends and family; Matthew gone, held by his father, grieved by so many; the photos taken by Now I Lay Me Down to Sleep, so beautiful; Matthew's casket, too small; the mark of an angel's wing on the church sidewalk; his marker at the cemetery on a cold day in January; his headstone.  Then the card sent out to mark his birthday:  "One year ago, our lives were blessed with an amazing miracle.  We will never be the same, but are so much better for the blessing of his life.  Thank you for loving him with us."  And more bittersweet, with the photos of him, his feet:  "...Matthew... 11/28/09 - 11/29/09  Our Gift from God."  There he was.  Matthew.

I love that boy.

Saturday, September 24, 2011

Mum and not mum

I have so much to say, and I have nothing to say.  I want to describe what it was like to have my daughter in the hospital getting sorted out, and I can't.  It just hurts too much.  Plus there's her privacy.

I want to tell what it's been like this past week as she transitions home, not yet having all her issues resolved.  I want to purge everything about me and how I feel -- powerless, frustrated, trapped, terrified, guilty.  I want to explain how diminishing it is not to be able to tell my child to just do her homework and have her do it.

I want anyone who reads this to know that she is not her depression and her behaviors.  She is a beautiful, intelligent, funny girl who has so much to offer.  And so much to learn.  To learn to control.  To access to cope.

I had coffee this morning with another parent who has been through some similar things with her son.  What a welcome break it was, and a welcome resource!  She lent me a few books and copied out a few names and agencies.

A case manager from our insurance company called the other day.  She pulled a list of names of doctors and therapists closer than the 90.6 miles it takes to get to Children's.  I got that today.

And just a few minutes ago, my daughter, of her own volition, sat herself down to work on her Science Fair project.

I know good and well that there is an overwhelming amount of work ahead of us.  I know that at any second, peace may be shattered.  But for this one moment, right now, it's quiet.  I think I'll hit "Publish."

Thursday, September 22, 2011

Chemistry

Chemistry is a funny thing. 
Johnny was a chemist's son,
But Johnny is no more.
What Johnny thought was H2O
was H2SO4
OK, not that kind of funny!

If I had it to do over again, maybe I wouldn't study linguistics and get my TESOL certificate.  Maybe I'd study the chemistry of the brain.  Maybe I could research what happens in the brain when a person experiences the symptoms of anxiety or depression.  Maybe I could apply that research to finding a solution -- symptom relief, brain chemistry balance, a vaccine.  Maybe I'd be in a better position to help my child.  Maybe I'd be in a better position to help my family.

I don't have it to do over again, so I'm taking a class through the local NAMI chapter.  The first peer-taught class met last night.  It was the introduction class, so of course it didn't get to the meat of the curriculum, but it was very useful.  A couple of points that struck me are, in fact, points that I've recognized for years about my son and Asperger's but hadn't connected to my daughter and anxiety/depression.  (You have to remember that I am the adult child of a parent with considerable mental health issues and therefore bring some unresolved baggage to the table.)

One point is that mental health issues need to be reframed as brain disorders.  They are as physical as diabetes, hearing loss, or heart failure.  Just as Asperger's is a neurological disorder, depression is a biochemical brain disorder and not willful defiance/noncompliance.

Another point is that this is not the child's fault.  Just as you wouldn't blame the child with diabetes for having a nonfunctioning pancreas or the child who is blind for not being able to see, we can't blame the child with Asperger's for having a lack of connections in the brain or the child with depression for having a chemical imbalance in the brain.  It's not her fault.

And a third point is that families of children with these brain disorders are often in catastrophe mode.  I've said before that some disabilities seem to be like hurricanes:  You can see them coming from off the coast of Africa, can track them across the Atlantic, can see their strength and where they will make landfall, and can get out of Dodge if necessary.  But having a child with an Autism Spectrum Disorder has always seemed to me more like experiencing tornadoes:  They pop up with little warning and might be an F0 or the wrath of God.  The best you can do is run for cover.  I think that brain disorders might just be tornadoes, too.

I'm looking forward to the next class.  And scared to death of getting through the next few days, few hours, few minutes.

Saturday, September 17, 2011

Come home

My baby still isn't back from the hospital yet.  I know we're getting things worked out, but I've had enough.  I want her home.  Of course, I want a staff member to come home with us to monitor everything, too!  Sigh...

Patience and peace are my current goals.  Prayers welcomed.

Wednesday, September 14, 2011

Hanging on tight

John 14:27

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

1 Peter 5:7

Cast all your anxiety on him because he cares for you.

1 Peter 5:10

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.

I will hold on.

Monday, September 12, 2011

Food

I’m a stress eater.  Absolutely.  Always have been.  I understand this about myself.  Don’t admire it, but understand it.  Never understood those people who are stress non-eaters.  Accepted them, but never understood them.

Apparently I’m an ultra-stress non-eater, if you can imagine such a thing.  Looking at food, smelling food are tolerable, but actually doing more than picking it up and putting it back down again with maybe a nibble at most is beyond me in such situations.

I didn’t know this about myself until this past weekend when I brought my daughter up to be admitted into Children’s.  Needing to make the decision.  Making the decision.  Getting to a downtown building I haven’t been to in over a decade, in the dark.  Coming through the ER on a Saturday night.  Spending hours there just to get her a bed at 2 a.m.  Sleeping in the car in the parking lot because I was too -- tired? distraught? overwhelmed? -- to contemplate finding a hotel much less getting there.  Waiting for visiting hours.  Not yielding to her pleas to come home.  Being in the unknown for every aspect of her treatment and my daily living activities.  Arranging for school work to make it through.  Talking to doctors via email, on the phone.  Waiting.

Getting to a calm enough place to run an errand and get some lunch only to find my battery was dead and alternator running too low.  Getting towed.  Waiting for repairs.  Arranging for back-up to get to my daughter during visiting hours.  Walking away from her again.

I’ve learned quite a bit about myself.  I'm not a drinker.

Sunday, September 11, 2011

Taking Issue

Who said, "That which does not kill me makes me stronger"?  I'm seriously hoping it wasn't Jesus 'cause I've never yet disagreed with anything He's said.

This idea sounds grand when you aren't being challenged (likely I've said it a time or two myself), but come testing day, it frankly stinks.  I won't be saying it anymore.

(BTW:  I looked it up.  It was Friedrich Nietzsche in Twilight of the Idols back in 1888.  Remind me not to read it.)

Saturday, September 3, 2011

A pile driver? Really?

It's funny.  Just the other day I posted that when trying to make my school system understand the needs of the 2e learner, "these things must be done delicately."  I added that I'd rather heft a mallet.  All in all, though, I don't tend to work well with mallets, and it violates my underlying philosophy that you catch more flies with honey than vinegar.  It also is way outside my comfort zone.

Almost immediately after posting that, I accepted a new Facebook friend, and the first thing that popped up was his info. page with this favorite quote:  "If you have an important point to make, don't try to be subtle or clever.  Use a pile driver.  Hit the point once.  Then come back and hit it again.  Then hit it a third time - a tremendous whack."  (Winston Churchill)  Oh, how gloriously freeing that would be!  Not to have to consider the egos or to preempt the typical poisonous responses of the people who need to have the point -- that we must meet both sets of needs, the need for rigorous input as well as the need for organizational and social skills supports -- whacked into their heads!

My comfort zone is my problem when advocating for the needs of my children.  If I stay in it, their needs don't get met.  I just don't like to behave badly.  It's wrong, and it's rude.  Despite what the good people of Wrightslaw recommend over and over, and what I truly believe myself -- that we must maintain a professional, collaborative, positive attitude -- I have not been successful using that approach.  At best, I get lip service.  Followed by a whole lot of silence.

If you've followed along this past year, you'll remember that my friend and I put a lot of effort into advocating for our 2e children.  We started out in September by speaking to the Board of Education in support of the Superintendent's Mission Statement and were surprised at the end of our three minutes with a Johnny Carson-like chat on the couch and praise for being so positive.  Lots of advocating later, in March, we discovered that the school system's response was to change the STEM application to include questionnaires that have the potential -- and let's face it, the likelihood -- of being used to screen out 2e children.

The response to our protest to that?  From what we can see, the Superintendent sent it back to the very people who were responsible for making the change in the first place and who have demonstrated from the beginning, through it all, and right to the end, that they do not understand what it means to both be gifted and to have special education needs.  It feels to me like the Superintendent handed my precious basket of eggs right back to the disguised foxes guarding the hen house.

So what do I do now?  Run off with my tail between my legs because yet again, being positive yielded not just a relatively benign nothing but instead ugly, sometimes vicious responses from the very people who are in the positions of power to support the needs of such children?  To risk an even uglier response?  I don't think so.  The children need.

Despite being so far outside my comfort zone, despite knowing that continuing means traveling even farther outside it, the question really is whether to continue the fight quietly, calmly, rationally, collaboratively or to whack that point with a pile driver -- though I like to think I could do that calmly, rationally, and collaboratively if not quietly.

My new Facebook friend's second listing in his Favorite Quotations is this, from George S. Patton:  "A good plan violently executed now is better than a perfect plan executed next week."  I don't think I could go that far -- talk about rude! -- but it's not off the table.  ; )