Our Ordinary Days

Test

Zachary has an anxiety disorder.  He worries a lot.  He is in a constant state of stress.

One of his anxieties is school.  Namely, failing school.  Last year he was always afraid of failing 2nd grade.  This year he is terrified of failing 3rd grade.

While all of his grades are currently passing, there is a big test that looms over the heads of all students in Texas' public schools.  The TAKS test.  3rd graders are required to pass TAKS, or they are retained in 3rd grade.  And Zach is scared of it.

The TAKS test doesn't take place until March or April, but today the students are taking a practice test.  As should be the case, this practice test is taken quite seriously.  It gives teachers, students, parents, and administration a good idea of where the students are in learning the required content.

I know that a speech from the teacher to reiterate the importance of the tests is sometimes in order for a class filled with clowns or goof-offs.  I know that since the test is of utmost importance to the teacher, the school, and the district, they feel the need to remind the students that their lives depend on their passing TAKS.

But I also know that a child like Zachary-- who is already miserably dreading TAKS, who is already convinced that he is going to fail, who already takes the test very seriously as if his life did literally depend on it--  does not need a reminder of its importance.  And in fact, a reminder of its importance may have quite a negative effect on the results of his test taking.

Zachary came home from school yesterday and announced, "Tomorrow is the day I find out if I failed 3rd grade."

Wow!  How's that for pressure??

How frustrating to be trying so hard at home to get Zach's anxieties under control only to be thrown this huge wrench of anxiety from school.  Ugh!

Remembering that today's test is actually just a practice test, I tried to convince him that this wasn't THE test.  But he wouldn't be convinced.  But thankfully he didn't mention the test much more before bed.

But then at 1:00AM, he came running to my room, crying.  "I'm going to fail 3rd grade!  I don't want to fail 3rd grade!"

I, of course, told him he wasn't going to fail . . . that we don't have to worry about that because he's going to do his best . . . that he is not going to fail 3rd grade.

He quieted down and got into bed with me.  We snuggled up close and tight just like he likes.  His little body fidgeted, writhed, and jerked as it so often does when he tries to go to sleep -- his anxious little body fighting him while he tries to relax.  Every few moments his sleepy, sad voice would say that he was going to fail.  I realized that his anxieties were speaking loud and clear in his little mind, convincing him that he would, indeed, fail.

It was then that I got the idea of whispering to him a different phrase, hoping it would drown out the whispers that were haunting him.  I wasn't sure how he would respond to my whispering.  I thought maybe he would tell me to stop and get frustrated.  But as I watched his little body jerk nervously and listened to his whimpers, I decided to take the chance.

While we cuddled, I placed my hand on his face -- a tactic which has had a calming effect on him since he was an infant -- and got my lips up close to his ear.

"You are smart and you will pass," I whispered so gently.  "You are smart and you will pass.  You are smart and you will pass," I repeated.

He did not tell me to stop.  And after a minute or so, his writhing slowed and his body relaxed just a bit.  My words were working.

"You are smart and you will pass," I repeated with each breath.  And I prayed as I spoke that my words would penetrate his mind and heart until he believed it.

For 10 minutes or more, I whispered the sentence in his ear.  When he got a little fidgety, I thought maybe he had heard enough so I stopped speaking.

But he immediately whispered sleepily, "Do more of that."

So I continued for quite a while, even after his body had relaxed into sleep.  While he snored, I whispered, "You are smart and you will pass.  You are smart and you will pass.  You are smart and you will pass."

He woke again later in the night and whimpered a little bit.  Then he snuggled up close and requested, "Do more of that."  So I whispered again, "You are smart and you will pass.  You are smart and you will pass."

This morning he didn't want to go to school.  "I'm going to fail 3rd grade today," he said.

But big brother came to the rescue!  Elliot was able to convince him that today's test was not the real thing so Zach went off to school feeling okay.

I pray like crazy that he passes today's test!

And I pray that as he sat in the quiet classroom taking his test today, that Zachary heard my whispered words in his ear:  "You are smart and you will pass.  You are smart and you will pass."

The Scent of Perfume

I love it when Chloe gets off the bus in the afternoon smelling of perfume.  I always wonder whose perfume it is . . . . the bus driver or her aide?  one of Chloe's teachers?  one of the aides at school?  one of the therapists?  the counselor or nurse?

I love it when she smells of perfume - not just because she smells so good.

I love it when she smells of perfume because it means someone during the day took the time to love on her a little bit.

And it makes me smile.

To Talk or Not to Talk?

We have an exciting new piece of equipment.  It is called Proloquo2go.  Heard of it?

First, let me explain that Chloe, my 8-year-old nonverbal daughter has used AAC devices for years.  AAC  means Augmentative and Assistive Communication.  Basically, an AAC device is something that helps a person "talk."  Some AAC devices are just paper with words or pictures that a person points to to communicate.  Even a slip of paper with a note scribbled on it could be considered AAC.  But most of what Chloe has used are electronic pieces with a voice output.  These devices are big, bulky, heavy, and expensive.  And we have failed to be successful with any of them.  Is it because they are too bulky for Chloe to carry around?  Is it because she hasn't found them useful?  Is it because it is complicated to push all the right buttons to make a simple request when signing or gesturing or just doing without is easier?  Is it because Chloe views anything electronic as "a toy?"  I think it's a combination of all of those things.  But she still has the need for a communication device so I periodically research them on the internet.

A week or so before Christmas, I came across this blog entry at Terrible Palsy, a blog that I follow.   It really made me curious.  Here was a device that was small, affordable, lightweight, and practical.  Would it be a good fit for Chloe?

I found the Proloquo2go website and got even more excited.  There are training videos that made it look so easy and promising.  We found some youtube videos about it.  We just got more and more excited about it.

Proloquo2go is an application that you download onto your iPhone or your iPod Touch.  It has all the functionality that the big, expensive machines have.  Easy and cheap!  Sounds promising!

So a couple of days before Christmas, Paul bought an iPod Touch for $200.  That same day, Paul downloaded Proloquo2go from iTunes for $187.  We also bought a case -- hot pink, of course -- with external speakers and a carrying strap online for $15.  And we were in business!  For only $400 we had a working little "talker."  Amazing.  I am so excited about it!  I am hopeful that it will be good for Chloe!

It came loaded with lots of words, vocabulary, sentences, and phrases.  I have messed with it, programmed it, and changed it, trying to make it more useful for Chloe.  It still needs some more work, but I will need to spend some time watching the training videos to figure some of it out.

I finally introduced Chloe to the talker today.  She is very interested, of course.  She loved working with it.  I'm sure it just seemed like a toy to her.  But I plan to have several more training sessions with her before setting her free with it.

At today's training session she got frustrated that the screen wouldn't respond to her touch every time.  I'm not sure what the deal was.  Part of the deal, perhaps, were her wet fingers that kept going into her mouth while I wasn't looking.  Also, I think maybe the iPod requires more of a tap than a push?  Not sure, but hopefully with practice and with my tweaking it it will be easier for her.

Stay tuned for more updates on the Proloquo2go!  Here's a video I took of our first training session:

A Nugget

Give yourself permission to say NO to some things

so that you save your time, energy, and emotion

to do the things that only you can do!

Nope, not a chicken nugget.  A nugget of wisdom.  A nugget of wisdom whose truth screams to me sometimes but seems really difficult to follow most of the time.

I attended a seminar for parents of children with special needs a year or so ago.  I left the seminar with this nugget that I think about all the time.  Eventually perhaps I will weigh every decision and every commitment with the criteria from this nugget.  But for now, I oftentimes say, "Yes!" or make a commitment without considering the wisdom found in the nugget.

When I make commitments without weighing them completely or when a situation changes at home but the commitment remains, I go through seasons of being overwhelmed with life.  That's where I am right now.  A bit overwhelmed.  It's not huge or terrible.  I go through it now and then -- being overwhelmed for a week or two.  But then my emotions and nerves calm, and I return to my usual happy self!  :)

Give yourself permission to say NO to some things

so that you save your time, energy, and emotion

to do the things that only you can do!

But I considered the nugget yesterday and said NO to two things that I wanted to do.  I knew I couldn't do them in our present state.  I knew that I needed to say NO to those two things so that I could save my time, energy, and emotion to do the things that only I can do.

What can only I do?  Love, nurture, and discipline my precious, out-of-control son.  Care for and nurture and connect with my sweet 7-year-old daughter who is a bit testy these days.  And work hard bringing some sort of peace to our household for Elliot and for Paul in the midst of all of it.  Those are things that I must do.  So I said No to two things -- to two things that someone else can probably do.

I very much wanted to help my friend yesterday.  I wanted to say YES and step in and help her day go more smoothly.  But I knew I had to say NO this time.

I very much wanted to take the family to meet up with our extended family on Friday evening to start our Christmas festivities with them.  But I knew I had to say NO this time.  (Actually on this one I just had to postpone a day.)

So "Yea, Me!"  I said NO!  I used wisdom and restraint!  Little victories.  :)

And you know what?  My friend completely understood and respected my decision.  And my family was totally supportive and encouraged me to do whatever I need to do.

Give yourself permission to say NO to some things

so that you save your time, energy, and emotion

to do the things that only you can do!

Do you need this nugget today??

The Daily Stuff

Chloe is getting a cold.  She's sneezing like crazy.  When she gets a cold, it usually affects her body to the point that she lacks the energy to walk or to sit up.  A "little cold" really takes its toll on her little body.  I expect a call from her teacher in a little bit, asking me to come pick Chloe up early.  If she's going to be plopped in the floor sneezing, she may as well be doing that at home with Mom.  That's my opinion, anyway; and Chloe's teacher respects that.

Zachary is completely weaned off of Zoloft, but we are still seeing lots of the manic behaviors.  He is nearly unbearable to be with.  I am maintaining my patience and my kind voice with him -- those are very important things when dealing with him, especially when he's out of sorts.  If you use an unkind voice with him or totally blow up at him, you can be sure that his blow up will be WAY BIGGER than yours!!  And I have found that it is not at all worth it.  So I keep my calm outwardly even if I'm exploding or crying inside.

But 'Tis the Season!!  The season to be jolly!

It's amazing how hectic and stressful the holidays can be.  At a time when it would be so nice to sit by the fire with friends and family and sip hot cocoa, I am running around like a crazy woman trying to get all my stuff done.

There are school Christmas parties to buy for.  The food, the crafts, the paper goods, the party favors.  And don't forget the book for the book exchange!

There is a pretty long list of folks to buy gifts for.  Family, extended family, teachers, therapists, bus drivers, aides, bus aides, counselors, favorite nurses . . . .

The daily stuff like cleaning house, doing laundry, and cooking dinner seem nearly impossible to get done right now.  There's no time for stuff like eating dinner or doing homework.  There's no time for bathing the kids.  There's certainly no time for playing with the kids or reading a book together.  A fire in the fireplace??  You've got to be kidding.  I don't have time to carry in the wood and find the matches!

No wonder there are so many Bah Hum Bugs lurking around this time of year.  It's stressful!

Add to that a little almost-8-year-old girl who is getting a cold and a precious 8-year-old boy who cannot control his little body or his actions right now.  If a mom didn't have a good sense of humor about her, she might just sit in the corner in fetal position and cry until January!

Cold!!

We went to the COLDEST Christmas party EVER last weekend!!!!

What??  I am NOT exaggerating.  I would never exaggerate about something like this.  It WAS the coldest Christmas party EVER!!

Each year we look forward to the ARC Christmas party.  They have the party at a different location each year.  Santa's there.  Face painters are there.  Music therapists are there with their instruments and pretty voices.  There are presents for all the kids -- those with special needs and their siblings!  There is food!  It is always a great time for the kids.

Well, this year, the party was held outside at the ball field where the Fort Worth Cats play.  The whole thing was literally a horribly painfully cold wind tunnel!!  Elliot and I both got splitting headaches pretty quickly.  Zippy was NOT a happy camper.  It was terrible.

We quick as lightning got some photos with Santa, grabbed our gifts, snagged a few snacks, played the drum for a quick Christmas carol, and sprinted back to our warm van!

I do have some photos.  You can't even tell we were as miserable as we were.  And the Santa was not a handsome Santa this year.  The kids didn't notice, but I think his mustache is in the wrong place. . . . and I don't think he was smiling behind that beard!!

 

Update

I mentioned that Zach had an appointment with his psychiatrist in this post, but I never updated you on it.  At that appointment we told the psychiatrist about the big ol fits Zach was throwing several times a day.  After hearing all about our latest issues, the psychiatrist decided that the behaviors we were seeing were all caused by his anxieties.  He was feeling so anxious all the time that he was literally on the edge constantly, and any little thing that was unexpected or undesirable would push him over that edge into a big ol crazy fit.

She wanted to medicate for his anxieties and see if that helped him.  So she prescribed Zoloft, an antidepressant.  The kid is so medicated already, but if this medicine will give him some peace back in his life, then we were eager to do it!  We started him off on a low dose and then increased it after a week.  It didn't take long at all for his huge fits to subside.  Now, let me assure you, he was still throwing fits, but they were more like the normal fits that kids throw. Big improvement very quickly.  I was a happy Mama. . .  for a few days . . .

But then I started noticing some disturbing behaviors.  The doctor had warned me to watch out for any manic behaviors, and if I saw any then I was to take him to ER for inpatient care.  Sometimes starting a child on an antidepressant may bring out some mania that is there but hasn't been noticed before.  The doctor even mentioned Bipolar Disorder, which sounds like a very scary diagnosis that I hope we avoid.  Especially since we don't know Zach's birth family psych history, then she had no idea if we would see manic behaviors.  (In Bipolar Disorder or schizophrenia, the manic side is the happy, up-side as compared to the depressive side.)

Zach was very chatty, jumping randomly from one topic to another sometimes in mid-sentence.  He was having a hard time pronouncing some words or thinking of some words because his thoughts were coming so fast and his mouth (which already had some issues) was trying to keep up.

He was (and still is) nearly unbearably annoying.  Just literally out of control.  Yelling, chanting, hitting, bumping into everything, jumping on our backs.  He was very disrespectful, laughing or shouting, "NO!" when asked to do something.  But it was somehow obvious that he wasn't meaning to be disrespectful; it was literally out of his control.

And he talked about death several times.  The doctor had mentioned that as a possibility, but I honestly couldn't even imagine what that would look like in an 8 year old.  But Zach, in his chattyness in one conversation told me several different ways that you could die playing sports.  Most of those were hypothetical about just a person, but he did also make it a little more personal in one conversation explaining a scenario that could kill him.  And there were several other conversations about death that he had with me.  It just seemed weird and random.  It wasn't really even alarming or morbid or anything, but it did make me think about the doctor mentioning "talk of death."

When I asked Zach's teacher what she was noticing, she reported that he couldn't pay attention or sit still at all.  "It's almost like he's nervous," she said.

So I called the doctor and told her what we were seeing.  After hearing the details, she decided to wean him off of the Zoloft -- it's not a good medicine for him.  Today is the last day he will take the medicine.  We will see the doctor tomorrow and see what she says and see which medicine we will try next.

She said the medicine will still be in his system for 3 or 4 days.  He is still out-of-control annoying, bless his heart!  And he has had a few big fits and is crying more easily than usual.  I suppose it's all part of coming off of the medicine.

<sigh>  It's all just part of the journey.  And Zach is totally worth whatever it takes!!

Bonk!

Well, on the heels of celebrating Chloe fitting in so nicely with the girls, I must report on her next birthday invitation which we had to cancel out on.

Chloe has very poor balance.  She has always had poor balance.  But Chloe goes through seasons of having really, really bad balance.  During the times of really, really bad balance, she falls a lot.  And, unfortunately, she doesn't have the reflexes required to catch herself when she falls, which means she literally falls right smack on her forehead usually.

Well, the last few months, she's done really well and has not taken any bad falls.  I was starting to feel comfortable and more relaxed with her walking, and have even been letting her wander farther than arm's length from me.  What freedom for her!  And what a vacation for me!

But, alas, last week she fell and smacked her head on the wall.  It didn't break the skin, but it came close, and made quite a mark and bump on her little face.

Well, yesterday at lunch I made a decision which shows how comfortable and confident I had gotten with her:  I let her sit at the kids table at the restaurant for the first time ever.  Granted it was a small table right beside where Paul and I were sitting, but the kids' table it was!  She was sitting with Zippy and one of his friends.

I must say that it will likely be another 8 years before I allow her to sit at the kids' table again.  I had already gotten up several times to straighten her back up into her chair, scoot her bottom back to the middle, and scoot the chair back up to the table.  Then about half-way through lunch, she did a nose dive (a forehead dive, actually) right out of her chair.  She didn't even try to catch herself -- just bam! right on her forehead, right on the bonk that she already had.

She cried, which is a good thing that she has only learned to do in the last 18 months or so.  She let me cuddle her and rock her and tell her how sorry I was.  I was surprised that it only broke the skin a tiny bit, but it hurt her badly.  She immediately tried to go to sleep because of the head trauma (that makes it sound like a terrible wound, but it is an appropriate term for knocking your head on a concrete floor!).  Poor baby!!

I cried, too.  It just broke my heart.  I, of course, feel sorry for her for getting hurt and for getting hurt so often.  But it was more than that.  I was so sad because of the cruel reminder that Chloe is not "just one of the kids."  She does still need to sit with Mom so I can catch her when she falls.  I'll have to find other ways to give my 8-year-old freedom, but sacrificing her safety, of course, is not an option.  It made me sad that I had to call and tell her little friend that Chloe couldn't come to her birthday party because Chloe didn't need to be crawling around in the McDonald's playscape with her balance so poor.  It made me feel badly that I never ordered Chloe a new soft helmet that would have protected her head from injury.  It made me sad that Chloe will have to start wearing a helmet again; it's an eyesore and it drives her bonkers.  My crying was a sort of pity party.  But it wasn't a pity party of my own, it was a pity party for Chloe.

Chloe's head is fine.  It will heal just like it always does.  (Although I wonder if she will have permanent bonk marks across her forehead.)  And Chloe is fine.  She has just entered into another season of lots of falls and bonks.  We've been here LOTS of times.  But I am ordering her soft helmet today so she will be somewhat protected.  And I'm fine, too.  I just have to cry a couple of tears now and then.  They dry, and I get over it and continue on with what I need to do.

And today, it doesn't look all that bad.  Can you see the knot on the other side of her forehead?  She did that one this morning.  She was sitting down playing toys and fell forward and bonked her head on the fireplace.  Yeah, we've got some balance issues.

Just One of the Girls

It isn't often that I think Chloe is fitting in "just like one of the girls."  We occasionally go on outings and try to blend in with the crowd and be just one of the girls.  Usually I feel like we are sticking out like a sore thumb because of how high-maintenance we are.  Usually I feel like we are slowing everyone down, or being annoying, or that Chloe is just not enjoying herself.

But last week at a special birthday party, I think Chloe had a ball and fit in nicely as "just one of the girls!"

Chloe has twin cousins who just turned 9.  They had a birthday party at the American Girl Store in Dallas. And Chloe was invited.  Chloe hasn't had many invitations to birthday parties so I was so pleased for her to be included.  But I wasn't sure how she would do at a tea party.  She doesn't chew food; but I figured she could lick the finger sandwiches.  She's not real big about sitting around the tabletalking; but I thought surely I could successfully entertain her and keep her occupied for one little party.  Besides, the only people going to the party were aunts and cousins and a Meme, all who adore Chloe and would be patient with us.

Chloe did GREAT!  And she had a ball!

First, she looked at the menu.

I made a selection for us to share:  a trio of miniature ice cream cones with sprinkles.  Now, knowing that the coldness of ice cream oftentimes hurts Chloe's feelings and makes her cry, I knew this choice was risky.  But the trio was one of the few things on the menu that didn't require chewing so I went for it. While we waited for our treat to arrive, Chloe sucked on her fingers while her Bitty Baby watched on.

And then, the feast began!  Chloe loved the trio of mini ice cream cones!

She picked them up.  She put them down.

She stuck her finger in the ice cream and then liked her fingers clean.

She licked them.  She picked them back up.  She licked them some more.  She put them back down.

She got lots of sprinkles on her chin and hands.  She had a ball and enjoyed the treat!

What a great time and a fun memory!

I was so proud of her!

And then later, waiting to be seated for dinner at a restaurant, Chloe joined in with the other girl cousins for a little hand jive game.  Too cute.

Just One of the Girls!!

Heaven's Very Special Child

First, let me say that I am NOT a daily reader of Dear Abby.  Not that there would be anything wrong with being a daily reader.  To be sure, the woman shares lots of knowledge and wisdom each day to lots of loyal readers.  I'm just not one of them usually.

But I happened to see her headline in today's paper and stopped to read it.  It is a poem.  It is a very sweet poem.  It's a poem about a little girl with special needs and about the care that the angels and God take to place that little girl in just the right home with just the right parents.

As I share this poem today, I would like to broaden it to include the other people who are a part of the little girl's life -- of MY little girl's life.  Surely the other roles are of upmost importance!  Don't underestimate YOUR role in the life of a special child-- teacher, friend, uncle, aunt, cousin, neighbor, therapist, bus driver, church nursery worker, nurse, doctor, mentor, grandma, grandpa.  This poem is really for all of you!

"Heaven's Very Special Child"

by Edna Massimilla  (mother of a daughter with Ds)

A meeting was held quite far from Earth.

It was time again for another birth.

Said the Angels to the Lord above --

"This child will need much love.

Her progress may be very slow,

Accomplishment she may not show.

And she'll require extra care

From the folks she meets down there.

She may not run or laugh or play,

Her thoughts may seem quite far away.

So many times she will be labeled

'different,'  'helpless,'  and 'disabled.'

So let's be careful where she's sent.

We want her life to be content.

Please, Lord, find the parents who

Will do a special job for you.

They will not realize right away

The leading role they are asked to play.

But with this child sent from above

Comes stronger faith, and richer love.

And soon they'll know the privilege given

In caring for their gift from heaven.

Their precious charge, so meek and mild

Is heaven's very special child."