Wednesday, September 26, 2012


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.)