IEP – Already Planning the Next One!

The IEP was held and our main concern was addressed.  I was polite and presented our issue briefly but thoroughly.  Everybody displayed serious and interested faces and wrote things on their pads.  We heard many things such as “I see” and “Yes” and we saw everyone nodding up and down.

But we did not hear them say what they will do to make it happen or if they will attempt to make it happen.

They had many nice things to say about everything else and set-up a few necessary things, which we appreciate.

The plan now is to get those smaller things in place and say “Thank-you very much.”   We will thank them for their ideas and suggestions about all of those other things.  We will praise them for having brought them to our attention and we have already taken action on all of them.

In less than a week, however, I will send an email to the person in charge asking her what day is best for us to discuss our main issue.  I will want to speak to her in person and will be sure to let her know how much I am looking forward to our meeting.

Her notes should help her remember that our son’s doctors are very anxious that we move on to this next step.  They feel that this step is in his best interest and we agree.

The people at the meeting most-likely agree too.  Well, all except for the school district representative who is paid to not spend money regardless of what is in the best interest of any special-needs person.

I anticipate writing the email (to be sent this week) with, well, let’s say “a lot of energy and enthusiasm!”

They will become tired of me within the next few weeks.  We will not back down.  As I am the one who “confronts”  (heehee!), I shall do so, ever-so-politely and annoyingly (if necessary).  Then again, I may become tired of being polite in this instance…

Let’s see how long this takes.  Any bets on how many meetings it will take?  

Oh, the issue, you ask?  Apartment residence.

Special Sunday Morning Sucks Edition!

So I’m up having breakfast before 6, because I’m going off to work this a.m.  Already have a load of laundry going, courtesy of the autistic kid, who is sleeping on the couch.

Make that was sleeping.  He walks in and plops down a bag with a couple of donuts in it.  I try to express, “Just a minute while I finish my breakfast,” but he’s not down with that.  His anxiety starts rising.  A riot is about to break out.

So I pull out his donut.  Scowling, he pushes it away and points at the bag.  He wants the other ^@(**% donut – it’s the exact same kind as the one on the plate but he wants the one in the bag.

OK, make the switch.  Donut and meds are down.

I go in the laundry room to switch the load from washer to dryer.  When I get back, it seems he’s finished his drink, taken mine and sucked that down, too.  And left a nice trail of donut crumbs and sugar.

Guess I should get the broom but I think I’ll let the dog handle that mess.  I have a split shift day; I’ll work this morning then go back in the evening.  New equipment going in to use so it will be a day to put up with glitches and griping people.  In the afternoon a couple wants to visit – their accustomed style is to ask to get together and then not show up.

See prior post, Tim.  Breathe.  Pray.  Take in something good before this day sucks you dry.

IN with is as important as OUT with

Last week, Melissa’s post on The IEP was our most viewed and got the most comments.

Our plan was to have her post her meeting aftermath thoughts today. Unfortunately, she’s under the weather so you get stuck with another of my esoteric, cosmically irrelevant musings. But it’s Sunday and you should be listening to an esoteric, cosmically irrelevant sermon today, so consider this divine justice. Like eating your vegetables, it builds character or something.

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A wise friend posted some prayer advice on his website.  I noticed that his prayer pattern emphasized taking good qualities in as well as casting out the bad, for example “I pray for contentment and against greed.”

A Facebook friend posted about his new effort to stop smoking.  A comment thread developed, and up came the idea of thinking about positive ways to fill the moments that he’d usually fill with smoking.

A woman in a discussion group for care giving spouses admitted to sitting in her garage when she got back from an errand, not wanting to go back into the house and all the endless work facing her.  She was feeling guilty about staying out, but the other members encouraged her to use the time to take in – take in a few relaxing breaths, light a scented candle and take in the fragrance, turn on the radio and take in some pleasing music.

Care giving can expose our weaknesses and faults like just about no other undertaking.  We can feel monumentally weak and ashamed, and focus on the qualities we would like to cast out – impatience, resentment, anger, aches and pains, etc.  The more we grind on them, the bigger and badder they seem to get.

It is vitally important that we seek to take in.  We need to displace the negatives with positives.  Positive thoughts.  Pleasant sensations.  Peaceful prayer.

There’s a profound warning in the New Testament.  Jesus talked about the danger of just chasing away a negative, without filling its former space with what’s positive:

“When an evil spirit leaves a person, it goes into the desert, seeking rest but finding none. Then it says, ‘I will return to the person I came from.’ So it returns and finds its former home empty, swept, and in order. Then the spirit finds seven other spirits more evil than itself, and they all enter the person and live there. And so that person is worse off than before.”  (Matthew 12:43-45, New Living Translation)

His followers came to know that the solution is to take in:

“…the disciples were filled with joy and with the Holy Spirit.” (Acts of the Apostles 13:52, New English Version)

I’ll end these deep thoughts now… there’s been a bit of displacement down the hall.  Joey was thumping around in the bathtub.  Not a seizure, thank God, but just flipping his legs for fun, in a way that has most of the water out on the floor.  Gotta deal with that…

Yeah, another case where in would be better than out.

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We’ll appreciate your thoughts and prayers for Melissa to feel better.  Hopefully, she’ll have those post-IEP thoughts up for you on Tuesday.

Care giving puts stress on couples

Some marriage preparation materials use a rubber band to describe a couple under stress. Challenging situations bring out instinctive, emotional reactions that might be very different in each partner. So instead of dealing with the anxiety as a unit, they pull in very different directions. No matter how strong or flexible their relationship, it can snap like a rubber band if stretched too far.

Care giving can be hell on couples. It keeps them in a state of perpetual stress, often highlighting their most profound differences.

This can create mutual frustration, blame and bitterness when care giving goals are not reached. It can stretch a marriage to the snapping point.  A medical professional we visited early in our son’s diagnosis surprised us by asking, “So how is your marriage?”  She was warning us that care giving can break couples apart.

As was evident in the two preceding posts, Melissa and I are different critters. She is a more forceful advocate, and I am much more of a conciliator. She was better able to express the stressful run-up to an IEP, because she understands it from an advocate’s point of view, emphasizing resistance and results.  I would write a piece too heavy with “fairness to all parties” to do justice to the anxiety of this week.

Personality differences like ours present challenges:

  • Advocates emphasize results and are not bothered if perceived opponents leave the table unhappy. Conciliators emphasize relationships and will compromise to maintain them.
  • The advocate can be perceived as an unreasonable zealot (which some are).  The conciliator can be perceived as wimpy and a sell-out (which some are).

These basic personality differences can be harnessed positively if the couple stays aware of them and uses them soberly and intentionally.  Like the interrogation strategy in TV cop shows, couples can be intentional about playing “good cop – bad cop,” alternating advocacy and conciliation to progress toward goals.

But anticipation and anxiety can mess with sober planning and thinking, and strategic good cop – bad cop gets replaced by lone ranger emotions…

I hear from enough people who are care giving on their own to know how blessed I am to have Melissa as my partner in life, and intensely so when it  comes to our son’s care.  Knowing, appreciating and lovingly navigating our differences is an important part of caring for each other, which is essential to being care givers to our son.

The IEP (part 2)

There is no doubt that if we had had the money, our son would have received far better services.  We would have been able to pay for what he needed out of our own pocket – therapists to “shadow” him at school, redirecting him when he jumped out of his chair and grabbed things from around the room and throwing them, therapists for occupational, speech and physical therapy, and help at home so that we could sleep through the night.

It was a mess.  If the witness to our son’s behavior was a parent, they dared not report it because it could result in less help for their own child(ren).  If the witness was a therapist, the likelihood of that therapist being allowed to work in any school in that district would become slim and thus not only strip them of their job but hurt the students that they were currently helping.  Also, the private business that the therapist worked for would likely be “black-listed” by the district.  It was a “lose-lose”.

We are glad that our son is no longer in high school.  Of concern now, is that our son needs placement in a well-run residence. He is almost 19 years old.  An organized schedule with a trained staff would be in his best interest, although we will miss him terribly when this eventually happens.  But financing of his day is still up to the school district representative.

While it is true that our son needs placement in residence, we have heard in the past that the school district says that they are responsible only for what happens during the day and that whatever problems we have after that are not their concern.  The choices of where we could place him to live while we wait for the proper placement are dismal.  Our son’s doctors have tried to communicate his need for residential care to the proper people.

Please note that we are not arguing the on-going issue of whether the school district needs more money or whether the money they currently have is being mis-directed.  That is another subject entirely.

It is  not any easier for our son to spend long periods at home than it is for us.  So, we keep ourselves busy with many things, as Thursday is 2 days away…

The IEP

Anticipation of an IEP (Individualized Education Program) for special-needs people  can be painful.  I remember not being able to sleep on the nights before our son’s IEPs.

An IEP is  held as long as the person’s program is funded by a school district, usually until age 21.  Some of those in attendance are the parents, some of the teachers, advocates for the special-needs person on behalf of the parents and the school district representative (who makes the decisions to allow or not allow additional services or programs.)  The special-needs person is always invited but in our reality, this guy doesn’t sit through meetings!

This week is our son’s annual IEP. Some of the anticipation comes from remembering painful meetings from the past.

There have been IEPs in which school district representatives made decisions not in our son’s best-interest.  We would request more help for him; the bottom-line was that there were not enough funds to provide it.  Sometimes they would bring in school therapists or psychologists who would say that he didn’t need the services and it was difficult not to tell them that we know our son better than they.  We are labeled by them as “lay care givers” and they label themselves as the experts.

We are always outnumbered by professionals in the meetings and only they are allowed to take what they called valid notes for the record.  I remember re-reading their notes and finding parts that were way off the mark with regard to what our son needed, followed by a line such as “Parents agree with this decision.”  I also remember how restless the school district representative became while we re-read her notes, saying that she had an important meeting that she needed to leave for, but I kept reading anyway.  I did not give in to the pressure.  But the pressure was there and it is remembered with each year’s IEP.

To be continued…

I got care gived

Over the weekend I was able to enjoy significant rest from care giving.  I was able to go on a retreat with some men from our church.  Good conversation, fishing, hunting and Sunday morning prayer in a serene location with gorgeous autumn weather.

It was more than just getting away from my routines.  All kinds of other folks became my care givers.  I wasn’t called on to do any cooking – meals were set before me.  I don’t own any fishing gear – guys lent me theirs and coached me on how to use techniques that were new to me.

Then there were care givers from heaven and nature.  God took care of me via the quiet and beauty that abounded.  Coyotes serenaded me one prolifically starry night.  One guy’s hunting dog took to playing with me and even tried to snuggle in my sleeping bag.  Lots of fish hit my line – no keepers, but catch and release was fun.  We were after Walleye and Northern Pike – feisty when hooked and satisfying to reel in.

2 lb. Northern with goofy respite enjoying care giver. Yes, I let him go.

So who took care of the kid at home?  Melissa, of course.  She was my care giver as well as his.

As a care giver, I’m blessed to be part of a tag team.  As you might have read in Tuesday’s post, Melissa didn’t have peace and quiet.  She stepped in to handle all the emotionally draining work so I could rest and refresh.

When I got home on Sunday night, she kept asking, “Did you see the bright orange leaves on the tree out front?”

“Of course not.  My eyes don’t do color well even in the daytime.”

“You should try and see it.”

“In the morning, OK?”

When I took our dog out on Monday morning, I got a look at the fall foliage – then realized  that all of the front yard plants were trimmed back for winter.  Melissa had arranged a yard service to come and do an annual chore that usually wipes out all of a Saturday, not to mention my back.  Talk about major care giving.  She really came through for me.

Even that tangled mess you see on our blog’s masthead is cut back and cleaned up.  I won’t change the picture, because now it reminds me of much more than the out of control mess that care giving can become.  It reminds me that care givers can get “care gived,” too.  We are blessed by the generosity of others.

Gotcha

Repetition.  With autism it comes in many forms such as hand-clapping, running back-and-forth and watching the same movies, movie segments, and even movie credits, for hours!  So, of course that happened again this weekend.

However, just as when someone says something that gives you the opportunity to tease them (you know, the “you set yourself up for that one” line) the one in your care may give you an opening to release your stress.  In some cases, you can laugh with the person that you are caring for.  With my Dad, as he became thinner from illness, his nose looked larger.  So, I made up a song called “Daddy has the biggest nose, it grows and grows and grows and grows.”  I remember his belly-laughs and felt special because I was only 8 years old and I made him laugh when he was so sick.

Yesterday, I had another opportunity, but the laughs were all mine.

While the day was filled with the typical things such as having to be quiet for hours on end, listening for seizures or other signs of distress, the opportunity arose for me to simply treat him like a typical teenager and to triumph in a tiny way.

I “got even.”  Ah- HA HA HA HA!  After having cleaned and disinfected the  bathroom floor and changed his sheets, after having been able to tune-out repeated phrases he was making, I was doing quite well.  But then…

He found a song on the computer.  He especially liked two lines of that song.  He played them, and I counted, over 100 times.  No reason for me to say “This is ridiculous.”  It was a normal Sunday afternoon.

But something that is never normal is my singing.  Here is what happened:

From the adjoining room, after his having played those lines for the ga-zillionth time, I started singing along every time he played them.  He called out “I’m just kidding” and I called back “Yes!  I’m just kidding!”  (I wonder this would work on kids who constantly ask “Are we there yet?”).  He played over and over, I sang over and over and I repeated his “I’m just kidding” phrases.  Then…

He stopped playing the song.  It wasn’t as good as getting him to aim toward the toilet better, or not wet his bed or even to be able to take him out when he felt like staying home, but it was good.  The song stopped.

Please understand that I know him well-enough to know that he wouldn’t become upset.  He was just another annoyed teenager and I was a triumphant Mom!

Guess ya had to be there.  And guess ya had to have heard me sing.

“Great, Now I have Guilt!”

…said the toy dinosaur in the movie Toy Story after he realized that Woody the Cowboy was not trying to destroy Buzz Lightyear after all!  Now he had to try to help save Woody from doom.

When a family-member or close friend is under our care and something happens that we think we could have been able to avoid, we can become overwhelmed by guilt.  Why weren’t we there to stop or fix it immediately?

Most of us have dealt with this on one level or another.  The person who is ill often feels guilt too, seeing how their needs are affecting the care giver that they love.  An example of this is when an incontinent person is embarrassed by an “accident” and the care giver feels guilty for not having been near them to get them to the bathroom in time.

So, what about these day-to-day things that happen that we “should” have been there to prevent?

Tim and I have had “louder-than-usual” conversations.  Whether they be about a bad day or things going on in the news, or an argument, it sounds all the same to our son.  He becomes stressed and we regret having raised our voices as we then begin to worry whether he will have a seizure.  If he does, it is completely our faults.   We do not consider whether the seizure would have occurred anyway.

On one occasion, it was another long day when I was home alone with our son.  I decided to wash a few dishes and fold a bit of laundry.  This gave our son a nice window of time to have a seizure.  The guilt I felt for getting up to do something slightly physical is still with me.  As I brought the laundry to his room, he was lying face-down on the floor and I saw some blood on the rug.  How could I have let chores be more important than being able to hear him when I was alone with him in the house?

Ah, care giving.  The art of feeling guilty for fulfilling ordinary duties when extraordinary demands are waiting to overwhelm you.