Sunday, December 30, 2012

Deaths and lives

I'm going to Susan's funeral tomorrow.  Well, "Life Celebration."  I expect to cry.  I expect to remember.  I want to make sure that I incorporate the traits that I remember her for into my life, into how I treat others -- to try to be more optimistic, more positive.

It's been like that for the past six, eight weeks.  I've been thinking about those who have passed away, remembering what they've given.


Lori's Matthew, born November 28, 2009, died November 29, 2009, a few hours on Earth but having such a lasting impact.  I've learned to be more sensitive to infertility issues and to infant loss, to be more aware of the needs of children around the world and the need of parents to have their children remembered.  And from Lori, I've learned the power of faith and prayer.

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Memories of Matthew were brought to the forefront even more after the shooting in Connecticut on December 12th.  The loss of those precious lives, so senseless, and the grief of their families and friends, took me back to the stunning grief and disbelief of Matthew's death.  It hurt all over again in cutting pain, for him and for those children.  I hope to be more patient with my often-times trying children, to tell them and to show them how much they are valued and loved.  I hope to renew my commitment to advocating for my children, to work diligently to get them the services that they need.

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My mother, Barbara, passed away a year ago next week.  This, then, was the first Thanksgiving, the first Christmas, and tomorrow, the first birthday without her.  While I'm so thankful that she is no longer in pain of any kind, I miss what could have been but never was.  From her I learned a love of hymns, a foundation in the Lord, never to lie, and the music of Johnny Cash.  And how to be silly with small children.

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I miss my grandmother something fierce all the time -- Memorial Day or Fourth of July, Thanksgiving or Christmas, odd times throughout the year.  My traditions, my childhood memories are rooted in the times spent with her.  I value those traditions.

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I've been thinking about my dog Otis, who passed away almost two years ago.  This sweet, special needs dog -- my children's first dog -- offered doggy comfort and unconditional doggy love, particularly when depression hit hard.  He taught us all patience.  And to watch where we stepped.

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I don't feel melancholy; I just feel very introspective and very aware of lives and deaths.


Friday, December 28, 2012

Death and life

Susan Dennis, a lovely, kind woman, passed away two days ago.   I knew her from Girl Scouts.  We spent quite possibly the. hottest. week. ever (heat indexes in the 110s) at Winona Day Camp in 2010.


We led the two Junior horseback troops that year, so we rode the bus to the horse farm together, and we chatted outside the barn as our girls worked on badges.  She took snaps of my daughter and I of hers.




I also knew Susan through AWANA -- a fabulous children's program that teaches children how to follow Jesus Christ.  I volunteered at AWANA for five years, the last two with or near Susan.  What struck me time and time again was her soft-spoken patience and her genuine happiness to be developing those small souls to know and love Jesus.

She was also so very proud of her children -- and with good reason.  Her dedication to them was obvious in every word she spoke, in every way that she engaged with them.

As people learn of her passing, more examples of her impact on her community come to light.  They make me wish that I had known her better.  I hope to be a better person for having known her.



Saturday, November 3, 2012

So long

I know, I know.  It has been so long since I've written anything here.  I don't even remember where I left off.

I've been working through some issues -- health, mental health, school, insurance, diet, homework -- for the four humans, two dogs, two toads, one mouse, one bearded dragon, and assorted fish.  Oh, and doing laundry.  (Long pants and heavy shirts certainly fill up the washer faster than shorts and T-shirts.)  And getting through a hurricane, which wasn't as bad for our area as Irene had been.

I've got some answers about my own falling-apart health and some things I have to do to fix what I can.  I've also got a new crown, though sadly in my mouth and not on my head.  Things remain the same in the depression zone.

This getting older business has gotten, well, old, and I'm just not liking it.  The physical drags me down.  The concept has brought me low.  I have reached no zen-like state between wisdom and decrepitude coming with age.



Friday, October 5, 2012

Sneaky

Today was another day of doing little but the basics.  I can feel the depression creeping back.  Not crippling.  Just blah.  Just petering out on anything started.  Blah.

Wednesday, September 26, 2012

Whinging

One of the problems with having a child with special needs is when they need all over the place.

Private issues are no longer private, no matter how much you might wish they could be.  Doctors, educational teams, church family... every institution of which your child is a member is now privy to the most personal information; boundaries become non-existent.

And people contact you to tell you about the latest concern:  the behavior, the lie, the talk of self-harm.  You are to do something.  As if you can whip out the magic wand you've been keeping in storage, the one you've not been using for the past decade as your world, your child's world, fell apart.  As those signed on to help jump ship in bafflement over the failure of their interventions.  You are expected to deal with the latest concern in a positive, acceptable, effective way, yet you know that if you could do that, the latest concern would never have happened. 

You don't want to abdicate responsibility.  You just want some help sweeping all those needs into a manageable pile.  If everybody knows your business anyway, can't somebody help?



Monday, September 24, 2012

How joyous

When I go to church -- admittedly, not often -- I know that though the entire sermon may not resonate with me at that time, there will always be pieces of it that do.

This past Sunday was no different.  The pastor is working his way through Acts, and Sunday's part was about Peter's imprisonment.

Peter’s Miraculous Escape From Prison (Acts 12: 1-18, NIV)

1 It was about this time that King Herod arrested some who belonged to the church, intending to persecute them. He had James, the brother of John, put to death with the sword. When he saw that this met with approval among the Jews, he proceeded to seize Peter also. This happened during the Festival of Unleavened Bread. After arresting him, he put him in prison, handing him over to be guarded by four squads of four soldiers each. Herod intended to bring him out for public trial after the Passover.
So Peter was kept in prison, but the church was earnestly praying to God for him.
The night before Herod was to bring him to trial, Peter was sleeping between two soldiers, bound with two chains, and sentries stood guard at the entrance. Suddenly an angel of the Lord appeared and a light shone in the cell. He struck Peter on the side and woke him up. “Quick, get up!” he said, and the chains fell off Peter’s wrists.
Then the angel said to him, “Put on your clothes and sandals.” And Peter did so. “Wrap your cloak around you and follow me,” the angel told him. Peter followed him out of the prison, but he had no idea that what the angel was doing was really happening; he thought he was seeing a vision. 10 They passed the first and second guards and came to the iron gate leading to the city. It opened for them by itself, and they went through it. When they had walked the length of one street, suddenly the angel left him.
11 Then Peter came to himself and said, “Now I know without a doubt that the Lord has sent his angel and rescued me from Herod’s clutches and from everything the Jewish people were hoping would happen.”
12 When this had dawned on him, he went to the house of Mary the mother of John, also called Mark, where many people had gathered and were praying. 13 Peter knocked at the outer entrance, and a servant named Rhoda came to answer the door. 14 When she recognized Peter’s voice, she was so overjoyed she ran back without opening it and exclaimed, “Peter is at the door!”
15 “You’re out of your mind,” they told her. When she kept insisting that it was so, they said, “It must be his angel.”
16 But Peter kept on knocking, and when they opened the door and saw him, they were astonished. 17 Peter motioned with his hand for them to be quiet and described how the Lord had brought him out of prison. “Tell James and the other brothers and sisters about this,” he said, and then he left for another place.
18 In the morning, there was no small commotion among the soldiers as to what had become of Peter. 19 After Herod had a thorough search made for him and did not find him, he cross-examined the guards and ordered that they be executed.
In fleshing out his point, the pastor emphasized Peter's sleeping while shackled to two guards (with more standing guard), in prison, with numbered days.  Can you imagine what you would be doing if you were in that situation?  Probably not sleeping!  He went on to tie in a verse from James Ch. 1(NIV): Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds.

Now can you imagine doing that?!  Trials are joyous experiences?  I looked it up and figured out whyConsider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.  (I can't say that I want to be mature and complete if it means my faith has to be tested by trials; I guess I'll have to take it on faith that maturity and completion are  desirable goals!)

Certainly we have trials here.  (That we're discussing hospitalization again should tell you how severe they are.)  I have been trying since I heard the sermon to figure out how to be joyous in these trials.  The only thing I can come up with is prayer.  It seems a bit off to be asking to feel happy about the crisis about which I'm currently praying for help, but I'll give it a try.


Wednesday, September 19, 2012

Everybody leaves

I don't watch much regular TV.  There isn't much on that I'm interested in, or what I'm interested in is on when we're having our crisis du jour.  However, I love DVDs and instant videos.  I've been watching several series lately:  House, The Closer, Doc Martin, and Midsomer Murders.  Sometimes I sit and watch, but mostly they're on while I'm doing something else (usually food prep).  I don't always understand the British-isms of Midsomer Murders or the medical jargon of House, but I do get Dr. House's premise that everybody lies.

A seeming non sequitur:  While communication and openness with my son appear to be improving (thanks to supplements and oxytocin), the home scene with my daughter is disintegrating.  It's September.  This makes the third September in a row that finds us in crisis.  Maybe it's that school demands have increased.  Maybe it's allergies.  Maybe it's PMS.  This year, maybe it's the fact that she is knowingly drinking beverages with corn syrup or that we deliberately added back cheese a few weeks ago and gluten and yogurt a few days ago.  The child has eaten grilled cheese sandwiches breakfast, lunch, and dinner for three days!

Whatever.  The result is that negative behaviors have spiked, as have episodes of defiance, and we're having to intervene to be safe at home.  You would think that all the therapy she/we have been through would have helped.  But then, despite being able to tell everyone the "correct" answers, she rejected her therapists and threw up a wall between them and the help they could give.  Then the therapists dismissed us because they were unable to "reach" her.  These crises that we are having almost daily emphasize just how isolated we are.

I know that God doesn't let us down.  I try really hard to remember that while we're in the middle of it all.  But though I don't know that everybody lies, it sure feels like everybody leaves.  Just another way that this house is such a lonely place to be.


Monday, September 17, 2012

Nightmare (but not really)

A couple of nights ago I woke up from a nightmare -- that my son had died.  It was, to be frank, sickening, and I woke up in the wee hours knowing that it was a dream but still distressed.  And when I fell back asleep a bit later, I went right back into the dream.

When my son got up yesterday morning, I made the poor teenage boy give me a hug -- a real hug, not that slight touch he thinks passes for a hug.  He sat with me for a minute, told me about a nightmare he had once, and then stayed awhile petting the dogs and chatting.

Last week I asked him if the oxytocin spray he had started using over the summer was helping.  He said yes, but he couldn't tell me how it was helping.  Well, now I know.  And isn't that fabulous?!

Wednesday, September 12, 2012

On again, off again

I'm not a rule breaker.  Never have been.  I rarely rebel.  And really, when what you'd rebel against is your children's diagnoses and/or the treatments that make them better, what's the point?

However, this diet business is driving me crazy.  I can firmly state that corn syrup is a problem for my daughter.  I next want to challenge corn -- kernel, popped, chips -- to see if those foods cause behavior problems.  But we have to get "clean" again first.  Except cheese.  Sorry, I can't serve meals without cheese any more.  It's just too hard, and since no one actually gets sick from cheese, we'll just have to live with any behavior problems from it.  But we have not, in any way, shape, or form, been clean this week.  In fact, last week's behavior problem of my daughter's not getting up for school caused me to break out a huge crutch this week while my husband is away on travel:  "For every morning this week that you get up and out the door on time for school, I'll get dinner out."  Three for three today!

Tonight, we settled in to watch a DVD, and, bam!  There's that ugly behavior again, ugly to the point of my having to intervene to allow her brother enough time to get to his room and lock himself in.  Why?  Because she "felt like it."  So convince me that three days of foods with gluten, casein, some corn, and soy make for a healthy diet, because I'm just not seeing it.

Before the bam! hit, my daughter was looking up ways to lose weight, wanting me to 1) tell her what exercise to do to lose weight while rejecting every suggestion, and 2) go out and purchase "healthy" foods like bread, milk, and corn.  Did you know that almost every bread on the shelf has corn syrup?  I found a packaged roll that doesn't, but that she deemed unacceptable.  Did you also know that if I knew of an exercise that would make a person lose weight, a) I wouldn't be the size I am, and b) I would be rich as Croesus from patenting it and selling it to every overweight American from sea to shining sea?

Tomorrow is another day.  Another day of making foods that she can eat but won't.  Another day of constant vigilance to prevent/minimize the return of the uglies.  Another day of being the food bad guy.  And next week, no more food lures for getting up for school. 

I would really, really like to rebel.  I can't.  I'm not built that way.

(In case you're keeping track of these things, the other shoe dropped today.)



Wednesday, August 29, 2012

School started last week.

My son turned 15 last week.

Today is Day 6 of school.

I have had multiple tests and doctors' appointments in the past few months; not all the results are in yet.

I've added cheese back into our lives, though we're still (mostly) gluten-, corn-, soy-, and casein-free.  Mostly.

All of these topics could be fleshed out.  I'm just too tired and, let's face it, approaching discouraged, to do it.  I've quoted it before, probably even on this blog awhile ago, but this about sums it up for me:
The devil once offered to sell at auction all his tools save one -- discouragement. "For," said he, "if I have that, I can get along very well without the others." (Helen C. White)
Don't all those great Hollywood movies and epic stories talk about the power of hope?

Monday, August 20, 2012

Start-ups

School starts in two days.  While I'm so ready for that -- 10-plus weeks of summer vacation is entirely six-plus weeks too much -- I don't want the stress of the school year, either.

My son will have four STEM classes.  Based on the workload last year with only two STEM classes, we're going to have to do a lot more overseeing this year.  And he doesn't have the study skills class this year that he had last year.  This is a problem on multiple levels: his resistance to help, his single slow speed, his lack of comprehension of the necessity of planning projects before doing them, and his sister's insistence for attention when a parent focuses on her brother.

My daughter will start off her first full year in general education since 3rd grade.  Transferring out of STEM last March took the workload pressure off her plate but added right back the "unchallenged" factor.  With a lack of gifted programming in our elementary and middle schools (with the exception of STEM), appropriate rigor is always in the hands of each teacher.  Even at the end of this past year in the new school, a couple of teachers indicated that their general education classes weren't at my daughter's level and that's just the way it is.

It seems to me that my school system does average really well.  However, exceptional students (of any kind) may or may not have their needs met.  In my case, both my children are twice-exceptional (2e), and I can't seem to get both sets of needs met at the same time, if at all.

I've been thinking about why my son was able to succeed in the middle school STEM program but my daughter went under by the third quarter.  (A friend's daughter just pulled out after making it through 6th and 7th grades.)  My son was already identified as 2e when he started the program.  Although we had a fair quantity of trouble getting his IEP implemented in the STEM program, he had an IEP from the start, and he did eventually get the supports he needed to access the curriculum.

My daughter, on the other hand, was successful in the elementary STEM program (almost straight A's) I believe because the elementary STEM program is quite different from the middle and high school programs.  It is across-the-board above grade level, but it seems to understand that the children are nine- and 10-year-olds.  They are children in the STEM program; they are not little adults in the STEM program.

When my daughter entered middle school, her special needs had not yet been identified in the school setting, and the demands put on her were too much without supports.  Though her difficulties were first brought to the school's attention in October, nothing useful happened through the time she left in March.  (Apparently several of her teachers hadn't even known she had a PST plan that had started in December!)  I will always wonder if she would have been successful if she had had the supports she needed from the get-go, or if the supports she needed had been identified and supplied immediately.

So here we are starting up another school year.  Open Houses are tonight and tomorrow, and, as usual, I have to go in asking, "You know my son has an IEP.  Yes, really.  Have you read it yet?  Have you read my daughter's 504 Plan?"

Thursday, August 2, 2012

Cornwall

You know the story, "Welcome to Holland," by Emily Perl Kingsley, right?  (Go here to read it if you don't.)  I've shared it multiple times with parents of children with special needs (usually autism spectrum disorders) to help put it all in perspective.  I've lived in Holland a really long time.  I've never made a visit to Italy, but that's OK -- It can be really nice in Holland. 

Someone recommended that I watch the British TV series, Doc Martin.  From the Amazon Editorial Review:
He’s surly, tactless, self-centered, and uptight—but he’s the only doctor in town.
The doctor is in--but he’s not happy about it. After developing a crippling fear of blood, hotshot London surgeon Martin Ellingham (Martin Clunes, Men Behaving Badly) is forced to retrain as a GP and relocate to the charming seaside village of Portwenn. Dour, discourteous, and dismissive, he immediately clashes with Portwenn’s quirky villagers.
They had me at "surly, tactless, self-centered, and uptight."  Just who does that sound like?  Maybe your favorite, beloved Aspie?  Well, bless Amazon Prime Instant Videos for letting me watch the first four seasons free!  I just love it (enough to buy Season 5).  I watched the whole series over the course of a few weeks, and I've gone back and re-watched episodes several times since then.

But why?  Other than the Aspie-like connection and the fun of British humor, what's the draw?  The story lines revolve around village life -- slower paced than what I'm accustomed to, with an occasional sheep or pig involved, and people's idiosyncrasies are accepted without comment or incident.  But really, I just love Portwenn (really Port Isaac) in Cornwall.  It's gorgeous, from the cliffs overlooking the water to the cottages and buildings to the old seawall.  It's picturesque, quiet, and soothing.  I've even thought about moving there for a life of quiet retirement.

What I've come to realize just recently, though, is that I want to be there because I don't want to be here.  Holland, at the moment, just stinks.  Smelly, nasty, nerve-wracking stinks.  I don't want to be here with the never-ending harangues, the ingratitude, the demands.  I don't want to be here with needs of everybody pressing on me constantly, no time off, no time away, and no one caring for or about me.  I don't want to be here with the diagnoses that fill this house.  I don't want to be here.

I want what Cornwall represents.  I want to be in a there that is quiet.  A there that is calm.  A there that lets me be.  I've been hanging on tightly to the countdown 'til the start of school -- just 3 more weeks now -- but I know that though the house will be mine from 7:31 a.m. until 2:15 p.m., the new school year will bring its own set of demands and problems, potentially big ones.

The trick will be to find Cornwall in Holland.


Four years, never forgotten

I'm reposting this in honor of Ryan Baumann and with prayers for the comfort of his family, my neighbors.  Thank you for your sacrifice.

Patrolling the hills of Afghanistan

Formal pose

From the Arlington National Cemetery Website:

Sergeant Ryan P. Baumann, 24, of Great Mills, Maryland, died August 1, 2008, on Route Alaska, Afghanistan, of wounds sustained when his vehicle encountered an improvised explosive device. He was assigned to the 4th Battalion, 320th Field Artillery Regiment, 4th Brigade Combat Team, 101st Airborne Division (Air Assault), Fort Campbell, Kentucky.


Ryan's family

Ryan Baumann
made a difference in this world.


Tuesday, July 31, 2012

So much nothing

I've started post after post in my head and can't seem to get past the first sentence.  How do you write about the paradox of lots and lots happening and nothing happening?  (OK, this time I made it to the second sentence before walking away.)  Let's see if I can organize all the thoughts buzzing around in my head:

The Olympics -- How cool are they?  I love to watch the Olympics, always have.  This year, however, my daughter's insomnia does not mean that she likes the Olympics any more than she ever has, so when I'm up with her, I'm not seeing much of the athletes.  This might be a good thing, though, as watching these competitions makes my heart race and my stress levels go through the roof!

Supplements, Part I -- My daughter has been taking supplements since November when we first saw the DAN! doctor in Baltimore.  (Same doctor who set her up on the diet free of gluten, casein, soy, and corn.)  The doctor adds more supplements with each visit, sometimes taking away a few, but mostly with a net increase in type and amount.  Before yesterday's appointment, she was taking eight supplements daily, some once, some twice, and some three times a day.  Twenty-three pills and one injection in addition to her medications.  (Curious?  5-HTP, P5P, Calcium/Magnesium, MSM, Folinic Acid, Tyrosine, GABA, and Methyl B12.)

Yesterday the doctor said to stop taking the Cal/Mag and one of her meds.  He also added three more supplements:  Alpha Ketoglutaric Acid, Zinc (based on her most recent blood work), and Choline.  That takes her up to 26 pills and one shot.  Did I mention that she balks?  She goes through periods of balking, griping, procrastinating, ranting...  Then she'll be all proud of swallowing handfuls at one time.  We even went through several weeks of emptying capsules into juice, at her request, with frequent demands for different juices as suddenly what was once termed "delicious" became "disgusting."

Supplements, Part II -- Yesterday's appointment with the DAN! doctor was for my son, too.  It was his follow-up to all the testing ordered at his first appointment a month ago.  The results are in:  No problems with gluten but high sensitivity to casein.  No milk or cheese for the boy.  He's doing OK without the milk -- we stopped buying it a few weeks ago in anticipation -- and since he didn't show sensitivity to wheat/gluten, he can have his breakfast, lunch, and dinner Cinnamon Toast Crunch.  However, in addition to his multivitamin, focus medication, and the oxytocin nasal spray started after the first visit, he is now to take six supplements.  (Still curious?  DMAE, P5P, Cal/Mag, Folinic Acid, Vitamin C, and a specific probiotic (for the yeast found in his system).)

Let the games begin!

A New Round -- Depression is a nasty thing.  My daughter's depressive episode last summer was awful to see.  This summer, I believe we've seen a dip again (actually, a few dips), but nothing like last summer.  She was hopeless.  We were helpless.  Seeing the spikes this summer takes me back to last summer and our despair.  I thank God that it's not as bad now, and I pray constantly that it gets better, that we aren't setting up for a school year like this past one.

Menopause -- While it ought to be a case of "'Nuff said," in fact, 'nuff can't be said.  Google (peri) menopause symptoms.  In addition to the female issues, you'll see irritability, mood swings, insomnia, panic attacks, anxiety, weight gain, bone density loss, cholesterol changes for the worse, among other symptoms.  It can go on for years.  Years.  And it has been.  In the past several months, I've been to six doctors and need to see a couple more.  I've got issues coming out my ears.  It's even more annoying because now is the time that my daughter needs her mother to be stable; sadly, Screeching could be my middle name.

Ouch -- As if it's not bad enough to learn that I have to wear compression stockings for the rest of my life -- It's a desperate attempt to avoid having ankles like my Great Aunt Agnes' -- I developed a tooth abscess and have to go to an endodontist tomorrow for a consult and likely subsequent root canal.  (I had an allergic reaction to the first antibiotic; I'm now on antibiotic #2 and have had all the icky side effects and none of the healing from the first one.)  From the endodontist's,  I go to a Visitation for the passing of my friend's husband.

There's more, but this will do for now.  Praying for the light at the end of the tunnel.


Sunday, July 22, 2012

Unexpected

My daughter came home tonight from a Youth Group event with a couple of other churches.  First words out of her maniacally smiling mouth were, "I had lots and lots of corn syrup!"  "Why?" I asked.  She had no response but a preteen look and headed to her room.

As she was halfway up the stairs, her dad asked her if she was going to tell me what else happened tonight.  "Oh, yeah," she said.  "I got saved.  And I'm going to get baptized."

Two concepts with impact:  Corn syrup and Jesus.  She's going to have to learn to monitor her own intake of both.  She is definitely on the right track with the latter.

Maybe Jesus can help us with the corn syrup.

Saturday, July 21, 2012

Snit, anyone?

I was in a bit of a snit yesterday, and I'm not sure I've finished with it yet.

Day in and day out, meal planning and most cooking is up to me.  I don't like to cook.  I'm not particularly good at it.  It brings me little satisfaction and no joy.  I didn't have a great role model for cooking, and I've never felt the urge to experiment.  I love my handful of dishes that I don't screw up; make enough of them to eat off the leftovers, and bam! -- the week has flown by.

In reality, though, I can't do this anymore.  Everything takes longer to make when you can't reach in the pantry for what you need because you can't have the four ingredients that are in almost everything store-bought.  (Baking, now, is a completely different story.  I could bake all day and be quite happy.  In fact, that's what I did today:  pumpkin bread and "Cheez-Its" added to yesterday's sandwich rolls on top of the zucchini muffins earlier in the week.)

Anyway, back to the snit.  Since we're GF/CF/SF/CF around here, I've been teaching myself about cooking foods I didn't even know how to pronounce before November, when this all started.  (Please explain to me how quinoa comes out "keen-wah" -- I just don't get it.)  So I ordered a gas grill.  Lots of recipes essentially say to just toss whatever on the grill, maybe flip it once, and you'll have this fabulous, colorful, tasty, and nutritious meal to wow your family and friends.

I have zero experience with a gas grill and only a little with a charcoal one -- usually I light it up just for the S'mores -- so this is a pretty big deal to me.  I put this new grill together yesterday -- by myself -- and despite the threat of rain, fired it up.  I made burgers (to go on the homemade rolls) and grilled summer veggies -- again, by myself -- and served it all up sweet as you please to my family.  (Well, not to my son as his lunches and dinners consist entirely of Doritos and Cinnamon Toast Crunch.  (Breakfast is minus the Doritos.))

The reviews were... tepid.  The rolls were too... too... too gluten-free.  The burgers, according to my daughter, had too much black on them.  The veggies were, well, veggies.  My husband said he'd finish what was on his plate, but he wouldn't want the veggies as leftovers.

Well, spit.

Today I tried a recipe I've had for 20 years and never made:  Cream of Peanut Soup from the King's Tavern in Williamsburg, VA.  That and the peppermint ice cream I had there were, for me, the highlights of the trip.  Anyway, I made it.  It wasn't as good as what we had at the Tavern, but then, I had to substitute almond milk for light cream.  (I'd be really grateful if anyone could tell me a dairy-free, soy-free substitute for cream that is also corn- and gluten-free.)  I served it with a garnish of crushed peanuts and the still-warm pumpkin bread.


"It's OK," from my husband.  "Blech!" from my daughter, adding for good measure, "That's disgusting."  I've had enough.  Yesterday's complete lack of enthusiasm was the tipping point; today's response just ensures I'm down.

Figuring out what to make meal after meal is, to me, an often-times overwhelming chore.  I frequently ask my daughter and husband what they'd like for dinner; the response is an underwhelming, "I don't know."  I slog my way through it, but I would be so grateful if my family would tell me what they'd like for dinner instead of telling me they don't like what I've made.

 I know that I need to focus on the fact that I have both a family and food.  I'll shake off this snit soon, at least until dinner tomorrow.

 

Sunday, July 15, 2012

That other shoe

I was at an evening meeting last week.  With 20 minutes left, I started getting texts from my daughter asking me to come home.  One of the reasons I've had to cut back on volunteering this past year is just exactly that:  My daughter's negative behaviors skyrocketed while I was gone.  From getting on her brother to badgering me to not leave or to come home to running away from home while I was gone, my volunteering just didn't seem worth it to me.

So here I was at a meeting (one of the few I still attend), and the texts started.  I finished out the meeting and drove home.  When I pulled up, before I could even dump my purse and bag, my daughter rushed me at the door.  What happened next was mind-blowing:  She hugged me tight and said she loved me.  This rarely happens.  Typically, my daughter rejects all hugs and loving touches and seemingly never initiates them.  And about the only time she tells me she loves me is when she's sick.  Really, really sick.

I was thrilled.  This could mark a turning point for us.

I just don't believe it.  This past year has left a really ugly scar right across my belief center.  So many attempts to help my daughter started off promising enough but ultimately failed and resulted in escalated negative behaviors -- way worse than they had been.  To top it off, our last two service providers -- the ones that had the most potential and the wisest treatment plans -- left us; they couldn't engage my daughter, so they ended working with us.

When my son was younger, I had to say that just because he did it today doesn't mean he'll do it tomorrow; one success is not mastery.  It feels very similar now with my daughter.  Just because she was loving and appropriate and appreciative today doesn't mean she will be tomorrow.  (Certainly not with puberty holding a party at my house.)

So what will it be?  One of our doctors said that my daughter has an equal chance at any of these outcomes by the time she's ~18:
  • She'll get worse.
  • She'll stay where she is.
  • She'll get better.
She started all this very young.  The hopeful part of me thinks that she'll pull through this and pull through it earlier -- she's just on the fast track.  But mostly I find it very hard to be happy about the positives because I'm waiting for the other shoe to drop.  And explode.




Thursday, July 5, 2012

Just a little more, please.

Twenty-four-hour urine collections.  Second-pee-of-the-day collections.  Hair samples.  Blood vial after blood vial.  I hope to fine-tune my daughter's dietary and supplements interventions (which include being free of gluten, casein, corn, and soy plus the addition of 8 supplements a day).

And finally, almost 12 years after being diagnosed with Asperger's, we're testing my son.  The boy eats only gluten- and casein-ful foods; he hasn't had a fruit or vegetable in 12 years.  I was absolutely traumatized when, at the age of 2-1/2, he completely stopped eating.  Completely.  For a week.  The only way to get him back onto food was to use his "routines" to our advantage:  He always played at the nearby park in exactly the same way and then had a snack in the pavilion.  After seven days of no food intake, I took his listless little self to the park and prayed that he would eat the Chex in the snack bowl.  He looked so unsure, so at war with himself.  How was he to eat when he had correlated eating with barfing (which we didn't know at the time)?  How was he not to eat when his routine was to play on the equipment (by himself, in the same pattern) and then have a snack?  Well, he ate, but his diet from that time forward was even more limited than it ever had been.

We debated going casein- and gluten-free.  Around the age of four, we tried substituting soy milk and cheese.  That was a big no-go.  I just couldn't bring myself to take away all foods so that he would eat the GF/CF foods "when he was hungry enough."  That was never the way he worked.  If it didn't pass his judgment -- and I would have loved to have been privy to his judgment criteria! -- it didn't go in his mouth, no matter how hungry he was.

After we found the DAN! doctor up in Baltimore for our daughter (who doesn't have Asperger's but does have significant chemical imbalances),  I figured it was time to test our son.  My husband doesn't really agree that we should implement any dietary changes for him, but I'd like to start with the baseline testing.

So now between the two of them, in a 24-hour window from this morning to tomorrow morning, I've got three pee-in-a-cup tests going, one hair sample to collect, and two blood draws to have done.  Come on, honey.  Just a little more, please...



Wednesday, July 4, 2012

Marshmallows

Today was a pretty easy-going day.  My kids watched DVDs, did a little something on the computer, and the like.  (They're in a retro phase; today they busted out the Scooby-Doo.  I was planning on culling all the Scooby DVDs to donate.  Sigh...)  It's just too darn hot out to send either of them out to play, even if they wanted to, and at 12 and 14, I can't just turn on the sprinkler and let them run around like loons anymore.

For me, though, it was a busy day.  I feel like I haven't sat down for more than five minutes together.  Today was Food Day.  Food Day includes making all the things that go into all the things that get made.  To bake, I need baking powder, but store-bought baking powder has corn starch; corn is on our "forbidden" list, so I have to make my own baking powder from baking soda, cream of tartar, and potato starch (2-4-2 ratio, if you're interested).

To make peanut butter fudge, I need marshmallow fluff because store-bought marshmallow fluff lists as its first ingredient corn syrup.  To make marshmallow fluff, I have to make confectioner's sugar because store-bought confectioner's sugar contains corn starch.  Put white sugar into the blender for a really long time, but with pauses and shake-downs because the motor heats it up and it gets icky.  Then go back to the fluff recipe:  Beat egg whites, golden syrup (not the called-for corn syrup!), and salt for a really long time.  (Note to self:  Next time, buy a stand mixer to avoid standing at the mixer for 15-minute stretches.)  Add the confectioner's sugar and vanilla and beat some more.

To eat salads, we need a dressing.  After much experimenting, we found a Ranch dressing recipe that we like.  It doesn't have a very long shelf life, so we make it every five to seven days.  I like to line up a handful of containers for the seven herbs/spices that go into it (along with lemon-juiced almond milk (no casein in this house!) and Vegenaise (wickedly expensive) to substitute for store-bought mayonnaise (which, for reasons unknown to me, contains soy or one of the other forbidden foods).  That way, I can just grab a "mix" instead of measuring out half a teaspoon of this and a quarter of a teaspoon of that.

Because it's the Fourth of July, I figured we'd have S'mores.  To make S'mores, we need graham crackers (homemade to avoid gluten), marshmallows (homemade to avoid corn), and chocolate (specially bought to avoid casein).  I could have used the marshmallow fluff for S'mores -- and have in the past -- but I thought we'd enjoy toasting the marshmallows instead of glopping on the fluff.  I had made marshmallow peeps at Easter time, so I used that recipe and rolled the blobs in confectioner's sugar instead of regular sugar.  For whatever reason, (OK, I know the reason:  I tried using a meat thermometer instead of borrowing my neighbor's candy thermometer again) the first two batches of marshmallows were no-gos.  With the purchase of a pretty spiffy candy thermometer of my own, the third batch worked a treat.  By this point, I was getting tired.  The graham crackers didn't get made; we used up the last of the store-boughts and will just have to take the gluten hit.

We also had burgers and veggie kabobs.  Burgers require homemade buns or bread because even store-bought gluten-free buns and bread have corn, soy, or casein.  I haven't figured out how to make buns yet, and the GF bread mix that we used to like so much we now like not so much.  In another command decision, I bought regular, oh-so-full-of-gluten buns.  I cooked the burgers on the grill (oil-misted as Pam-type sprays all have forbidden ingredients) and topped them with bacon, casein-free, soy-free (read, nasty) cheddar cheese, lettuce, and specially bought bar-b-cue sauce or ketchup (as both are regularly forbidden).

I was planning to make casein-free chocolate ice cream, but my husband whispered to me as he headed out the door with our daughter that he was going to stop at Bruster's on the way home from the fireworks.  Bless him.  We're just going to ignore all the lovely casein in that most delicious Brusters ice cream.

So now I'm off my feet.  One child is happily holed up in his room; the other is out with her dad.  One dog is cowering under the bed upstairs and likely won't come out until well after the very last boom of fireworks; the other dog is stretched out beside me on the couch.  There's a piece of peanut butter fudge with my name on it, and maybe, just maybe, no one will need me for several minutes running.  It's funny how my definition of freedom has changed over the years.



Friday, June 29, 2012

Calgon

I was working on a post (about stress and getting my child up and ready every day), but I'm shelving that one.  Right now, in addition to feeling stressed about getting my child up and ready every day, I'm just so tired of being responsible.

Responsible for getting people places, for getting them home again, for planning and serving meals three times a day, for finding variety in food (when food can't include gluten, casein, corn, and soy), activities, even TV time, for being the only one in the house  who knows who gets which med when despite the existence of an up-to-date meds chart located in the same place it's been for a year, for doctors' visits, lab work, and follow-up, for teaching my children values/ethics/morals and not to have potty mouths at a time when my children are flooded by outside information and consider me a dinosaur, for advocating for my children when systemic problems are treated on a case-by-case basis, for knowing the exact latitude and longitude at all times of all items in the house, yard, and cars, including all things that have ever been lost/misplaced/damaged/destroyed...

When it's summer vacation, my workload quadruples, and I don't get a summer vacation from it.  My husband doesn't take vacation days to give me a vacation from responsibilities.  Even if we take a vacation, I'm still responsible for all the arrangements!

There are no Calgon moments here.  I hold on to the hope I feel every time I see the Staples Back-to-School commercial and hear, "It's the most wonderful time of the year!"  Amen.



Monday, June 25, 2012

Day 16

So much has happened since my last post.  Since most of it is about me and "the change," I'll skip right over to other items.  (You may thank me at any time.)

We are 16 days into summer vacation.  If you've got kids, I imagine you fall into one of two groups:  1) Those who LOVE spending time with their children and think that summer vacation can't get here quickly enough and is just too short!  Or 2) Those who dread the coming of 10 weeks of unstructured, "fun with the kids" time.

I, apparently, fall into the latter group.

My son believes wholeheartedly, and might I say, rigidly, that any activity that is not playing video games is a waste of time.  My daughter has not yet mastered the concept of entertaining herself.  (I don't count episodes of "Leave me alone!!" exits to her room with accompanying door slams.  Call me kooky.)

Here's my dilemma, though:  I don't really want them at home for 10 weeks with me in the Mom-is-Julie-McCoy-Cruise-Director role.  I really want them back in school.  The dilemma is that neither kid has a school program that fits him/her appropriately.  How can I wish them back in an "adequate," available setting when they need 2e programming, and I spend my time trying to get it for them?

I don't have any solutions at the moment.  However, maybe you'd like to see what I came home to on Day 14 of Summer Vacation 2012:  My sweet daughter, the light of my life and the hope of my future, made a duct tape "chalk" outline on the floor in her room.  Color coordinated, too. 


 Sleep-away camp, anyone?  Sigh.  57 more days...




Sunday, June 10, 2012

Muddied waters

School ended a couple of days ago.  The last few weeks were a mixed bag.

I found on the computerized grading system our school district uses (the Home Access Center/HAC) that my son had a handful of "zero" grades for classwork/homework activities.  When I asked him about them, he said, "I know.  I'm working on it."  Liar.  With only two weeks left, the handful had grown to a dozen.

OK, son, it's consequence time, more for the lies than anything else.  OK, son, it's time for your mother to talk with your case manager for the zero grades.  Ticked off, are you?  So sorry.  This means more parental oversight (i.e., Mom's going to be in your business) now and towards the end of every quarter/marking period.

This is part of my son's IEP; he needs to learn how to manage his time and how to advocate for himself.  However, unlike his neurotypical peers, he won't learn it by failing.  That's not who he is or how he learns.  That's why it's in his IEP, so that he can learn it through explicit teaching.  He also had a Study Skills class this year that was taught by his case manager, experienced in working with students with ASDs.  These skills are important for getting and keeping a job.

What really irritates me is that this is the exact reason that the Citizens' Advisory Committee for Special Education (CACSE, but SECAC almost everywhere else) recommended to the Department of Special Education that special educators/case managers be given access to HAC -- at minimum to the "Classwork" tab -- so that they can monitor students' grades and assignments in real time, without having to chase down classrooms teacher(s) to report on grades/assignments.  

CACSE recommended it this winter.  The Director of Special Education responded that it couldn't be done.  CACSE asked follow-up questions and offered additional explanations.  The director responded:
  1. The feasibility of providing case managers with HAC access is never going to get better.
  2. The “workaround” is that a student can log in and the case manager can see/have access to HAC.  This sets up student advocacy for the student to track his/her own progress.
  3. The HAC/TAC lack of access for case managers was a trade-off:  General education teachers cannot have access to the online IEP.
  4. Parents may give their child’s HAC login information to their case manager if they choose.
CACSE members believe that these responses indicate confusion about the issue at hand.  Personally, I'd like to offer this:
  1. If parents have access to HAC and teachers have access to TAC (the Teacher Access Center on the other end of HAC), what is the technological barrier to allowing case managers to have access to HAC or TAC?  
    • Surely, surely, our technology people and/or the software company itself can come up with a solution.  
    • Case managers already have access to basic student information (name, attendance, etc.) on HAC.  Expanding that access to include "Classwork" should be possible.
    • And now that I think about it, if parents are divorced but share custody, don't they get their own HAC accounts?
  2. Student advocacy is a great thing.  
    • Not all students are ready for it.  
    • Case managers are limited to viewing the account only when they see a student for this purpose, not necessarily when they need the information.  
    • Giving students the login information may not be appropriate for all students, especially given that the password can be changed directly from the account.  
    • Case managers are very likely to learn login information when students log in, thus risking the security of the account.  (Yes, I know that our case managers are lovely people; it's still a risk.)
  3. Access to the online IEP and access to HAC/TAC are completely separate issues.  
    • This is not a question of fairness, equity, or parity.  To argue that case managers can't have access to a tool that they need to effectively and efficiently implement students' IEPs because general educators don't have access to a special education program is illogical.  It also muddies the waters.
    • Additionally, if both HAC and the online IEP were implemented at the same time and access was "negotiated" prior to implementation, I want to see documentation of such.
  4. Parents' giving their children's login information to case managers works, but it is a security breach.
    • We teach our children never to give out their passwords, but we're being told that this is the solution at the school system level.
    • Additionally, in cases such as my own, I'm giving my son's case manager access to my daughter's information since the accounts are linked under one login.  I just doubled the risk.
On June 1st, with five school days and seven zero grades remaining, my son's case manager said this, "I do not have access to [his] profile via TAC...I can only view his attendance and general information.  I would need permission and access to HAC from you in order to view his day-to-day progress.  If you are willing to give it to me, I would take full advantage."  

Until CACSE can break through the barriers that have been erected around this issue, I gave it to him for as long as he is my son's case manager.  I'm not happy about it.

Sunday, May 27, 2012

Birthday wishes

Oh.  My.  Gosh.  What a fine birthday I'm having!  Sure, I had to load the car and drive my daughter and myself 200 miles to my sister's this morning, but after that, nice, nice, nice!

We went to the Philadelphia Museum of Art (and Gift Shop!) first.  My daughter really wanted to see the Arms and Armor Room and was quite impressed by the armor, swords, daggers, etc.  I was impressed with the detailed etchings on the armor.


She took a lot of pictures, and so did I.


 
In the Gift Shop, my daughter looked around patiently and showed me the items she wanted to purchase, including a bracelet, a ring, and some pencils.  There was no whining, no badgering, nothing but appropriate 12-year-old behavior.  And sweet to my heart was this exchange:

Me:  Isn't this a great purse?  Look at these compartments.  I really like it.
My Daughter:  Can I have it?
Me:  At $72, no.
My Daughter:  Aw.  I was going to give it to you for your birthday!

No, really.  It was sweet.

(What I really want is a leather backpack from L.L.Bean, but at $299, I can't justify it any more than a $72 purse.)

When we got back to the house before going out to dinner, my daughter wished me a happy birthday and gave me the bracelet she had bought at the museum.  Sweet.


My sister and brother-in-law treated us to dinner at their favorite pub in Philadelphia, and my daughter and I happily cheated on her dietary restrictions, including fruit cobbler back at home.  A  quiet evening together, and then off to bed.

What a fine, fine day.



Tuesday, May 22, 2012

Skin so soft

I coordinate the Autism Spectrum Support Group of Southern Maryland.  I'm listed as first contact, and I try my best to help people new to the diagnosis or new to the area (or both).  We've been almost 12 years in the school system.  I've lived and learned quite a bit as the parent of a twice-exceptional child (academically gifted with Asperger's).  When out and about, I've developed quite the thick skin regarding people's responses to my child, and I'm pretty open with what his issues are.

Then there's my daughter.  Though we've been living with her gradually escalating issues for the past nine of her 12 years of life, I don't belong to a support group for her much less coordinate one.  I don't fully understand what her issues are except that she is another twice-exceptional child (academically gifted with other special needs).  I don't tend to "go public" with her; only a few friends and family members know the full details.

I write about some of her issues here, but I rarely tell it all.

I want to understand my daughter's issues as I understand Asperger's.  I want to be confident in the decisions I make for my daughter as I am for my son.  I want the interventions for her to work as my son's interventions work for him.  And I find that I want that same thick skin for her that I've grown for her brother.

This past week's bruises resulting from her pinching me have made me realize that I'm very tender about people's responses to her issues.  I just don't want to have to explain what happened.  I don't want to hear judgments about my parenting or her problems.  I don't want to say it out loud; I don't want to feel the hopelessness, embarrassment, and shame that accompany the return of behaviors I had so wanted to be extinguished.  


Wednesday, May 9, 2012

Where?

My daughter cried her heart out two-and-a-half months ago.  She wanted to transfer out of the STEM Program so very badly.  She could do the work, but she couldn't handle the workload, and she couldn't navigate socially.

She has spent two months in general education in her "home school."  Tonight she cried her heart out because she is so incredibly bored in general education.  She feels challenged in only one class a day; the rest, she says, are "just worksheets."

She went from hands-on learning with her academic peers in all four core subjects to general education with grade level peers in two-and-a-half of four core subjects.  She no longer has the same level of technology in the classroom.  And, as she said when I reminded her that she missed out on the clubs that offered challenges in her new school, "Why should I have to wait until after school to do challenges and be bored all day doing worksheets?"  (Yes, there's some 12-year-old drama in there, but the point is a good one.)

There was more to our discussion tonight, including my daughter's saying that here, teachers' expectations are just so much lower than they had been in STEM.  I had to ask her to help me reconcile the fact that she didn't do her work when the expectations were higher with the fact that she was now requesting more challenging work.  Her answer?  She said she didn't appreciate the challenges when she had them.

Last week I met with my daughter's new teachers to do a check-in, see how they perceive her transition.  The five teachers of her four core classes attended.  Three of them specifically mentioned her very superior critical thinking skills.  Two said that she brought up the level of the class.  One of those two said that some of her ideas were so far beyond her peers' that the teacher believes her peers don't understand the ideas.

Transferring my daughter back into STEM, whether this year or next, is not very likely, though I'll make inquiries.  She has to learn to make changes within herself rather than demanding that the environment change.  Additionally, there is probably a story behind tonight's upset.  However, still on the table is her need for academic rigor.  That need was one of the major reasons we looked into the STEM Program the first year she could apply for a seat.  It was perhaps the determining factor in continuing in STEM6 despite our first-hand knowledge (when our son was in STEM6) of how ridiculously difficult the workload is.

I attended today's Board of Education meeting.  One of the two things that struck me during the meeting was that the Superintendent said that if anyone knows of a child who is having difficulties, contact him so that that child can be encircled by help.  It gave me goosebumps at the time and still does.  However, I've already asked for rigorous programming in middle school.  It doesn't exist.  I've already had my daughter evaluated for special education services.  Though she has ADHD and depression, she doesn't qualify.  Differentiated instruction happens in classrooms with teachers experienced in differentiating.  Technology in classrooms is uneven.  The economy is what it is.

My children are not geniuses.  They're just really, really smart.  They also have special needs.  As I've asked so many times for my son, I have to ask for my daughter:  Where is the place for her?


Sunday, May 6, 2012

Pick one

Pick one:  One day to the next.  One foot in front of the other.  Breathe.

Pick one:  Up, down; up, down.  Volatile.  All over the place.

Pick any and combine:  Sweet.  Smart.  Growing.  Maturing.  Thoughtful.  Accomplishing.  Experimenting.  Ugly.  Threatening.  Melting.  Procrastinating.  Cursing.  Blaming.  Impulsive.

Thursday, April 26, 2012

Around and around

It's so hard to trust.  I first asked for a PST meeting when my daughter was in Kindergarten.  I asked for another one when she was in 2nd grade.  The next one wasn't until 6th grade this past November.  The first one yielded nothing, as did the second one.  The third one led to a "PST plan" that was created in December.  In January, the PST team referred her to the IEP team; in February, the IEP team determined to evaluate her.  In March, she withdrew from STEM and switched schools.

My daughter's IEP meeting to review evaluations and determine if she is eligible for special education services was today.  She's not eligible.  She has been referred back to the PST team to develop a 504 plan.


Tuesday, April 24, 2012

Too many changes

We have made so many changes to help my daughter over the past several months:  diet, vitamins, home strategies, meds, school.  I don't know which change is responsible for what.

Of note, though, is what happens when my daughter goes off the diet (free of gluten, casein, corn, and soy).  She was "off diet" five of nine days.  The behaviors that have followed have been ugly.  (I started this post awhile ago and came back to it today.  I had to cut this ending to the first paragraph:  "...but I can say that at this moment, we are better than we had been."  It had been true prior to the build-up of five days' worth of gluten, casein, corn, and soy; now it's a little sad to be back where we were a couple of months ago.)

I don't know if I mentioned that we started seeing a DAN! doctor up in Baltimore in November.   He was the one who recommended eliminating foods and starting vitamin therapy.  It's a lot of work, but after these past days, I can say that the diet makes a difference.

Since last Friday's appointment in Baltimore, I now have to learn how to administer shots of methyl B12.  We tracked my daughter's response after two shots at the doctor's office:  two to three days of comparative mellowness.  She even took me by the hand to show me things in a store.  My do not touch daughter actually reached out to me.  If that's not compelling, I don't know what is.

In some ways, we truly are better than we had been.

However, prayers would be welcome.


Monday, April 16, 2012

Support

My daughter's situation worsened this past summer and through the fall.  It took me a long time to talk about it.  It seemed so very different from my son's situation despite the many similarities, and the stigma against mental health issues still exists.

Once I started talking, I found support and prayers.  I'm so grateful.

However, I've got to say that I'm tired of being the one on the receiving end of support that is amended by, "Of course, it's nothing like what you're going through."  I don't want to be that one, the person in maximum crisis.  I want to be normal again, to be able to talk to a friend without crying, or rather, without any reason to cry.

That's when I realized that I've done the same to other people.  I've made those same comparisons out loud to friends in need.  Maybe it bothered them, maybe it didn't, but I'm sorry I've done it.  I hope to be more sensitive in the future.


Thursday, April 12, 2012

Items

1. My daughter transferred a month ago.  People ask her how she likes it at the new school, how she's doing, etc.  Her response is typically a shrugged, "It's okay."  People ask me how she likes it, how she's doing, etc.  I have to say that it's really hard to say.  Most of her responses are tepid at best.  She seems to be having trouble socially, and it's pretty clear that she has only one friend.  However, according to the computerized grading system that our district uses, she's doing her work, is turning in her homework, and is getting 100s on most assignments.  Right before she transferred, she pulled up her grades and managed to get a decent report card for the third quarter, which came out yesterday.

2. I'm heartbroken for my friend.


3. I have to schedule a bunch of doctors' appointments NOW to fit them in before the end of the school year, which, according to yesterday's press release, is now a week earlier than it had been because we didn't use any of our snow days.  This also means that I'm facing the anxiety-laden reality of having to fill 10-1/2 weeks of summer.  At 12 and 14, my children have long since passed the stage of being happy with bubbles, sidewalk chalk, and the sprinkler.  I'd love to send them both to sleep-away camps for a couple of weeks...

4. Frivolous:  I dislike housework.  And menu planning.

5. This year I cut back on volunteering.  I don't lead my daughter's Girl Scout troop anymore (after three years), and I'm not volunteering at AWANA this year.  I still have the Autism Spectrum Support Group, CACSE, and the LDA, but I'm going to have to cut back from some of them, too.  It's another cost of addressing my daughter's needs.  (I'm not blaming her for my cutting back; I just have to focus my time and energy differently now.)

6. I'm upset with myself for not doing something that I had wanted to do yesterday:  Speak at the Board of Education meeting about April's being Autism Awareness Month.  With the newest CDC numbers out, schools need to recognize that patchwork "programming" isn't enough.  They have to work more efficiently and knowledgeably to address the educational needs of this population.  Not that I would have said that..  My saying something about Autism Awareness Month during the "Public Comment" portion of the agenda would have fit in well with the "Recognitions" agenda item, which included presentations about the 2012 Week of the Child and the Month of the Military Child.  I didn't do it.  I should have, and I didn't.

7. Daisy makes me happy.

Monday, April 9, 2012

Hearts

My friend lost her baby.  She was just starting her second trimester.  My heart hurts so badly for her.

Matthew's life was a blessing; his passing tilted my world.  He made me want to be kinder, gentler, more sensitive.  He helped me learn to pray.

Luke's life is a blessing.  He makes me celebrate joy in his baby and toddler discoveries.  He soothes his mother's heart.

This baby's life was a blessing.  S/he opened hearts to more love.

All these babies have been blessed, blessed to have known the mother love of my friend.  Dear Lord, please comfort my friend now.

Monday, April 2, 2012

Awareness

Today is World Autism Day -- raising awareness about autism.  April is Autism Awareness Month -- raising awareness about autism.  I coordinate the Autism Spectrum Support Group of Southern Maryland.  I live with autism, diagnosed, undiagnosed, and now, after receiving results from my daughter's special education testing, "highly likely."  I am aware of autism every single day.
Current numbers from the CDC show 1 in 88 children affected by autism.  If you know me, you know three.  I'll wear blue today, light it up blue today, and post multiple pictures and links about autism today.  And live in awareness of autism 364 more days before World Autism Awareness Day 2013.


Wednesday, March 28, 2012

Special? I don't think so.

This subject has been bubbling around in my head off and on for a decade, sometimes with anguish, sometimes with frustration, sometimes with a snort and an eye roll.  I've siphoned it off a few times in the past, but I think it may be time to let it out.
  • "God gives special children to special parents."
  • "It's good he has you for a mom.  I couldn't do it."
  • "You're his best advocate."
No, no, and no.  Words like these, though meant to comfort, hurt.  Parenting any child brings fabulous joy and inexpressible love.  Parenting a child with an autism spectrum disorder adds exhaustion, frustration, confusion, consumption of all resources, and, often, denial of the self.  The fight for services -- educational, therapeutic, recreational -- is overwhelming.  The need to fight for services is unconscionable and pervasive.  (Truly, I've never heard anyone say that her child got what he needed automatically, the first time around.)

Parenting a child with an ASD means having to become a specialist in ASDs, OT, PT Speech, the insurance system (including "creative" diagnostic coding), federal, state, and local special education laws, the school system, medications, myth busting, alternative therapies, allergies, data collection, urine collection...  Parenting a child with an ASD means having to become a specialist in these areas NOW.  Not tomorrow.  Not when you have time.  Not when it's convenient.  And certainly not when someone hands you a manual.

Parenting a child with an ASD means being on call 24 hours a day.  It means daily, weekly, monthly appointments with doctors, therapists, school teams.  It means public and private meltdowns.  It means celebrating every little accomplishment as if it were a major step because indeed, for our children, it is one.  It often means the loss of friendships, family ties, and dreams.  It means daily stress to levels many parents experience only a few times a year.

I don't prefer to think that God wants me to be exhausted, frustrated, confused, depleted, or denied.  I don't believe I have a talent for caring for my child more than other people care for theirs.  And there are times that I resent having to fight against the prejudices, against the systems, against cavalier attitudes.  There are times that I resent the drains on time, money, family.

I feel fabulous joy and inexpressible love.  I am thrilled by and grateful for every step forward my son has made in the past 14-plus years.  I don't bask in the "specialness" of parenting a child with autism.

To save for another day:
  • "He'll eat it if he's hungry enough."
  • "Let me have him for a couple of weeks.  He'll straighten up and fly right."
  • "Was it something you did while you were pregnant?"


Monday, March 26, 2012

It looks like my daughter is missing STEM.  At the same time, she came home today with only one homework assignment, and she had finished it in class!!  The afternoon and evening are hers with no need to clash over homework!  We may clash over other things, but homework won't be one of them.

Saturday, March 17, 2012

Endings, Part 2

So ends my daughter's first week at her new middle school.  When I wrote the previous post, I figured this one would likely be titled, "Beginnings."  Truly, though, we didn't have much of a honeymoon period.  Maybe a few hours each of the first couple  of days.  The rest is mixed:  nasty getting up in the mornings, nice communicativeness later in the week, evening meltdowns.  She even refused the Cheez-Its (not free of gluten, casein, or soy) that were provided as a snack during state testing last week -- very difficult for her, yet she did it!  But she's still all over the place.

Typically, my daughter has tantrums.  Recently, we've seen a lot more meltdowns than tantrums.  When "melting," she's likely to tell us how bad her days were, that she misses STEM, especially her teachers, how she hates her new teachers.  When she's open, she tells us about the cute boy who asked her to sit next to him at lunch, about the book (A Wrinkle in Time) they're reading in Language Arts, or that the Language Arts teacher said her answers were "amazingly well written."  She is all over the place.

Me?  I happy cried that she had done her classwork and had done it to her potential.  That she shared that part of her day with me was icing on the cake.  Last night, though, came a meltdown over not being able to make work a flashlight she assembled from an Altoids tin, batteries, duct tape, a Christmas light, and a paper clip.  The thing went flying across the room, and she sought me out to tell me that I was to blame for giving her faulty supplies.  Not to repeat myself or anything, but she's just all over the place.

While we're having tons of stress over this transition, it is just so wonderful that she has no homework this weekend -- not that she did it when she had it, but there are no assignments.  No homework stress.  Nothing pending, nothing due.  There is no homework hanging like a sword over our heads, and that ending makes me grateful.