Archive for July, 2011

Things Learned . . .

Things Learned While On Vacation:

1.  Texas is hotter than blazes right now!!

2.  Fiesta Texas San Antonio is the hottest place on the planet.

3.  The San Marcos River is ice cold.  ICE cold.

4.  The beach at Port Aransas is sandy.  yep.

5.  5 aired up inner-tubes are difficult to fit in a minivan that is already holding 5 people.

6.  The Mastin clan cooks some yummy food!

7.  Electronics while traveling is the best idea of the decade.

8.  Zachary and Chloe are homebodies!  And beg to come home after a couple of days.

9.  Elliot doesn’t feel the heat quite as much as the rest of us who were begging for AC.

10.  The “quarter mile hike” to the Hamilton Pool is the longest quarter mile ever.

11.  Chloe gets heavy after carrying her on your shoulders for a “quarter mile” hike.  (ask Paul)

12.  Chloe gets heavy after carrying her around in a tiny, uneven cavern for half an hour.  (again, ask Paul)

13.  There is a long line of people waiting to get into Fiesta Texas at 10:30AM.

14.  There are not nearly enough air-conditioned shows at Fiesta Texas.

15.  Getting a ride back out of Hamilton Pool is so much better than hiking out with a 55 lb. kid on your shoulders.

16.  Going down the chute in the river on your belly without a tube is painful.

17.  It is possible to sleep past breakfast time at La Quinta.  (Seriously, 9AM??)

18.  Hotel rooms with working ACs are awesome!!  (Better than last time!)

19.  Feeding the animals at Wonder World is slimy work.  Yuck!

20.  Chloe stays put in her bed when she’s hugely exhausted and up til midnight.

 

Advertisements

Diagnosis: Immaturity

Zippy has a handful of diagnoses:  cerebral palsy, cocaine positive at birth, oral paralysis, asthma, anaphylactic allergy to peanuts, ADHD, anxiety disorder, adjustment disorder, mood disorder — did I leave anything out?

It’s a pretty major list.  It’s a list that fills every single day with challenges for him and for those who love him.

But his new counselor, Mr. Daniel, added a diagnosis this week:  immaturity.

Yes, I’ve used the word often for Zachary.  I know he’s immature.  I’ve known for a long time.

But Mr. Daniel thinks that his immaturity is his #1 issue causing his behaviors lately.  I was sure that Zach has been purposely misbehaving.  I was convinced that we were dealing with a great nasty heart (inner-heart) issue of defiance.  Zach’s psychiatrist even mentioned Oppositional Defiant Disorder (ODD) at his latest appointment.

But Mr. Daniel thinks that Zachary is just hugely immature.  He categorized Zach as like a 4 year old.  He behaves like a 4 year old and deals with frustrations like a 4 year old.  He thinks that Zachary isn’t disobeying on purpose.  He thinks that Zachary isn’t purposely making the same bad choices after the same bad choices after the same bad choices; but instead is acting like a 4 year old would and repeating those bad choices while expecting a different outcome.  And even repeating those same bad choices not even realizing that he just made the same bad choice an hour ago.

Mr. Daniel explained it along with the personal construct theory.  Not to get too technical here but basically that as we age and as we experience life, the way in which we react to life changes and develops.  As infants our only construct is crying — crying if we’re hungry, crying if we’re cold, crying if we’re tired, crying if we’re scared.  But as we get older, we learn other ways – other constructs – to communicate and to adapt.  Basically, Zachary is still working from a 4-year-old construct.

Mr. Daniel suggested that we re-vamp our parenting with Zachary and parent him as if he were 4 years old.  We wouldn’t expect a 4 year old to behave like a 10 year old so we can’t expect Zachary to behave like a 10 year old either.  Actually, Mr. Daniel wants us to parent Zachary as if he were FIVE years old, parenting a little above his level, thus encouraging growth into that higher level.

We are going to make a Zach Spot where he can go into his own timeout.  He can cool off, he can be alone, he can come out whenever he cools off and calms down.  Hopefully the Zach Spot is something he can grow out of the need for before too long.  Mr. Daniel suggested buying some rods or sticks from Home Depot to put in the Zach Spot so that Zach can break them when he’s angry.  A novel idea I thought.  We are also to furnish the spot with crayons and paper and some other things that he might want to use while he’s there.

We are also to create a CHAIR.  And as Daniel humorously pointed out, the chair will NOT have electricity!  Hehehehe.  The chair will be a place for a timeout, but will have a greater purpose.  The chair will be furnished with a notebook where Zach will have to write three things:  What happened?  What is the rule?  What will I do next time?  Before he can get up from the chair, I or Paul will read his answers and discuss it a little bit.  The purpose of this activity is to train his “inner parent” or his conscience to think through decisions.  Hopefully by participating in CHAIR time, his inner parent will develop and will allow him to make better choices and to think through his consequences.

<sigh>

As I already said, I’m totally on board that Zachary is super immature.  And I’m hoping that this new technique will be successful and that it will bring some peace to our household.  I’m sad that there’s not an easy, quick fix!  If we are trying to grow him up closer to his chronological age, then it sure sounds L-O-N-G to grow him from 4 years old to 10 years old!!

But we can do this.

It will be such a mind-switch from parenting a 10 year old to parenting a 4 year old.  That’s a long way to lower our expectations.  But the positive thing is, if we lower our expectations to where he is, then He. Can. Be. Successful.

Wow.  He needs to feel some success.  We need to see him experience some success.

So there ya go.  In the span of a 45 minute appointment with the counselor, we went from having kids 11, 10 and 9 to having kids 11, 9, and 4.

I guess that could explain some of the bedwetting issues, too.  Hmmmmmm.

Halle Joy Video

Ever wonder exactly what my business is?  Ever wish you could learn about Halle Joy in a nutshell?

Well, this is the answer!  Here is the new Halle Joy video.

Look for me — I’m in there!  And so are a few of my good friends!  Enjoy!

It’s a perfect introduction to Halle Joy — its story, its products, its cause, and its purpose!  Love it!

Just leave me a comment or send me an email (kelly.mastin@hallejoy.com) if you want more info about joining my team or purchasing at Halle Joy.

You can check out my website, too.

And I have a business blog, too, you might like.

Let me know what you think!!

Enjoy!  🙂

God is Still God!

Recently when I faced a disappointment, I was feeling down.  I was let down.  I was dejected and deflated.

But my brother in the prayer to bless the food before lunch said, “God, thank you that You are in control.”

Those words opened my eyes (figuratively and literally!) and immediately encouraged me.

God IS in control.  He knows my situation thoroughly.  He was not surprised by any outcome.  He was not disappointed.  He was not defeated.  He was in control.  And everything happened exactly like He planned for it to happen.

I still don’t understand it.  Things still didn’t happen like I wanted them to happen.  I still have to count my losses and learn from this situation.

But He is still God.  And He is in control.  He is STILL in control.

With that knowledge, I can’t be disappointed.  I can’t be disappointed.

That is a huge realization for me.

The God who controls the sun . . . the God who commands the seas . . . the God who created the universe . . . is still in control and is not at all surprised by any of this.  If He can control the sun and the seas, can’t He control my situations?

Yes, He can!  I am positive that He can!

My Cry for Inclusion

(Settle in for a spell . . . this is a LONG one!!)

Several of you have asked for an update of our recent IEP / ARD Meeting.  And many more of you prayed for us to have wisdom and direction as we made choices for Chloe’s education for next year.  I really appreciate your thoughts and prayers and concern for us.  It’s been tough.

Here’s a quick update.

We are currently in disagreement with our school district about educational placement for next year.  We sat through a grueling 4 hour IEP/ARD Meeting the last week of school.

Paul and I (and my good friend who accompanied us for support!) stated the importance of Chloe’s continuing to attend her neighborhood school.  She made friends there.  She is progressing ahead of schedule on all of her goals and objectives.  We believe that she needs some additional support from the special ed teacher, but we want her to stay where she is.

The district administration made it clear that inclusion — at least to the degree that we were asking for — does not line up with their philosophy.  Instead, our district believes in sending students with severe disabilities to 4 different campuses at which they do special ed really well and are better equipped to educate a student like Chloe.

After 4 hours of no progress towards an agreement, we adjourned . . . later disagreed, and will meet back in August for more discussion.  Again, I would love your prayers for wisdom, direction, and favor.

Our goals for Chloe do not include shielding her from the real world or sticking her in a “special” classroom away from her peers and neighbors.

Our goals for Chloe include her being a part of her community — not a resident in an institution with other folks with disabilities.

The decisions we make today will decide what her life is like 10 years from now and 20 years from now and 30 years from now.  Every decision we make needs to take her closer to our ultimate goals for her.  Removing her from her home campus would not be moving her toward our ultimate goal.  No, removing her at this point would be moving in the oposite direction.

Below is a statement that I read at the 4 hour IEP / ARD Meeting.  I also sent it to a few people in our district to let them know what was going on.  It is long.  It is heartfelt.  It is honest.  And it was all but ignored in our meeting.  But I wanted to share it here since it really does communicate my and Paul’s hearts and desires for our daughter.  And it might help some of you understand why it’s so important for Chloe to be included.  (I have removed names of people and of our district.)

I am writing this letter to ensure that all of my thoughts are communicated at the review ARD of my daughter, Chloe.  I will read it in its entirety, and I ask that a copy of it be included with the ARD paperwork.

This year has been a rough one for Chloe.  And while some people worked hard to try to make this year successful for Chloe, the truth is that this year was not the success we had hoped for.  It literally pains me to know that most people on this team believe that this placement failed because Chloe wasn’t as smart as we thought she was . . . that Chloe is too dependent on her aide . . . that Chloe’s disabilities are more severe than we thought . . . or that RTE just doesn’t have the staff to support such a placement.  None of those reasons led to the failure of this placement.  The truth is that this placement was unsuccessful because of a lack of training.  And that lack of training led to a huge disservice – a disservice to the staff working with Chloe, but mostly a disservice to Chloe.

Because of Chloe’s achievements last year in 1st grade, the decision was made to move Chloe from a <self-contained special ed> placement to her home campus with supports.  Included in the supports was a full-time aide to assist her with staying on task and with self-care, hygiene, and general safety.  The transition was a hard one, and the first 3 weeks of school were unbelievably difficult for her.  As a reminder, Chloe was crying and screaming and throwing herself on the floor all day everyday for the first 3 weeks of school.  Chloe was hitting and was stressed out and miserable.  And all of this was going on unbeknownst to us, her family.  I didn’t call or visit during those first 3 weeks — I was attempting to give <the school staff> some time and space at the beginning of the year and was waiting before sticking my head in, knowing that I would be contacted if things weren’t going well.  As it turns out, things were not going well at all, and I was not contacted.  We will never know the impact those traumatic 3 weeks had on Chloe and on her success at <her home campus>.

Then a little more into the school year, her general ed teacher left on maternity leave – perhaps not the wisest of placements for Chloe.  So about the time Chloe was learning that maybe school was a safe place after all, she was faced with another big transition – getting used to a long-term sub.  Then a few weeks later, Chloe’s aide quit, and Chloe was faced with another big transition of acclimating to a new aide.  And shortly thereafter, Chloe’s general ed teacher returned – presenting Chloe with yet another big transition.  (I hope that something was learned here about thinking through classroom placement for special ed students you may try to include in the future.)

I partly think that without some of these negative events, maybe Chloe would have been more successful – that maybe if Chloe felt more secure and didn’t have so many transitions to work through maybe she would have had a better year.  We don’t know how much these events and insecurities have affected her.  But I truly think the failure of this placement falls on the lack of training.

I’ve already thanked <a district staff member> for her efforts and for the time she spent training the staff at <Chloe’s campus>.  It was, in fact, <that district staff member> who approached me about Chloe’s attending <her home campus> this year.  <That district staff member> is a valuable, knowledgeable resource.  She is good at her job and passionate about special education and about children.  But <she> is not an inclusion specialist.  What we were attempting to do with placing a child with disabilities on a campus and in a classroom with typical peers all day is called inclusion, and it’s something that <this district> does not generally practice.  It is a placement that requires new skills and new tools and new thinking.  That is the reason that at every meeting and in every phone call, I repeated the need for training.  That is the reason that I included an addendum to the ARD earlier in the year so that these specific trainings could be listed and referenced.  I listed specific training ideas that I knew were needed and would be helpful for success.  I requested that an inclusion specialist be called in to work with the staff working with Chloe.  I requested that teachers and other staff members be sent to the Inclusion Works conference in Austin in February.  But my spoken and written requests for training were obviously dismissed.  Throughout this year, I have attended not only the conference in Austin but several others locally, and I have never seen any of the people sitting at this table at any of those trainings.  It is the lack of training that made this placement unsuccessful.

At these different trainings, I have met people who successfully include students with disabilities in general education classrooms.  These campuses and these teachers and these aides have undergone very specific and skilled trainings to make it successful.  And I have heard stories from them of children with more severe disabilities than Chloe’s who are included and are successful.  I have heard stories of included students with full-time aides who are successful with that aide because of the training that the teacher and the aide received.  It is possible.  It is happening.  It is working.  But it requires training.  And this staff did not receive that training.

I believe, too, that there is a district-wide prejudice and ignorance that hindered Chloe’s progress this year. At <this district>, if a student presents with more involved disabilities, then, as a general rule, they are bused to a special campus that can service them. Take this quote as a case in point:  “An all day placement in a general education class is not the environment for a student with so many disabilities.”  It is a direct quote from the written statement of a grade level team leader at <our home campus> in regards to Chloe.  This quote and the attitude behind it show the extreme ignorance that is prevalent.  While I think we would all loudly and passionately disagree with the hurtful and prejudiced statement:  “The front of the bus is no place for a person with black skin,” somehow the notion of busing a child to another campus because of her disabilities is an accepted practice. Including a student with significant disabilities is not a common practice in <this district>, and I believe its teachers remain ignorant of this discrimination. It is shameful that these teachers have not been introduced to successful models of inclusion.  It is shameful that what we were asking them to do for Chloe was a very foreign concept to nearly everyone involved.  I think the district as a whole is selling their disabled students short all because of a lack of education and a lack of training of its staff.  And my daughter was one of the victims of it this year.  Many, many times I have heard the <district> mantra of  “Special Education is not a place – it’s a service.”   But I am left wondering after this year:  If special ed is not a place but a service, then why can’t my daughter get the service at her home campus?  Why can’t she be serviced here?  While we attempted to service Chloe at her home campus, there was no sufficient training; and therefore, I feel that lots of precious time was wasted.  And I am not willing to sacrifice anymore of Chloe’s precious academic time while waiting on the needed training to take place.

I think it is because of the lack of exposure to inclusion that it oftentimes seemed that the goal was to make Chloe as much like every other 2nd grader as possible – to adapt Chloe so that she fit into the 2nd-grade-student mold in a way that was comfortable for everyone.  Of course, that goal went unmet since Chloe does not fit that mold.  I was told several times early on that <this campus> “does special ed differently” than other campuses, but that is an excuse that I still can’t accept.  I think if more of the staff had been introduced to the elements of and philosophy of inclusion, then this year would have looked very different for Chloe.  Had the staff been educated and trained in inclusion, then they would have had an understanding of why it is important for Chloe to attend school with her peers.  Had the staff been educated and trained in inclusion, then they would have understood that it is not necessary for Chloe to fit into that 2nd-grade-student mold and they would have had the freedom to do things that are important to Chloe in order to support her.

I hope that everyone at this table knows Chloe well enough to know that her grades and scores are not indicative of what she knows and understands.  I have said from the beginning that there does not exist a test or an evaluation or a worksheet or an assignment that can tell us what Chloe knows and what she doesn’t know.  While most children purposely choose the right answer when they know it because of an intrinsic importance and motivation, Chloe lacks that intrinsic motivation.  Even when she knows the answer, she will oftentimes choose a different one for some reason – mostly just because it doesn’t matter to her whether she gets it right or not.  I hope that everyone at this table knows Chloe well enough to know that she knows a whole lot more than you were able to get her to show you.  None of us truly knows how much Chloe knows.  And that is the biggest reason that Chloe needs to be in general ed – she needs to be exposed to the full curriculum because she very well may be understanding everything taught in the class.  Just because Chloe is nonverbal, just because she is tricky, just because she is stubborn is no reason to assume that she doesn’t understand what is being taught.  I would much rather err on the side of teaching her too much and of expecting too much from her than to pull her out of general ed with the assumption that there are concepts that are too difficult for her.  None of us knows that.

Chloe has made some new friends this year.  Her new friends like and appreciate her.  For the first time ever, Chloe got to experience seeing her brothers in the hall at school.  For the first time ever, Chloe got to experience saying hi to classmates when we went for family walks around our neighborhood.  A privilege?  Or a right?  Whichever . . . Chloe surely enjoyed both this year for the first time in her life, and she’s been in school for 6 years.

This year I appreciated a couple of staff members really working hard to make Chloe successful.  This year I appreciated when a staff member who didn’t understand why inclusion was so important for Chloe went home and researched inclusion and returned to school with more understanding for our situation.  There have been some encouraging, shining stars this year.  But none of these stars were inclusion specialists.  None of these shining stars were experts in doing what we were trying to do.  And, unfortunately, it was the specialists and the experts who were missing from the picture this year.

I believe with all of me that the most appropriate education for Chloe would take place on her home campus, where she can attend school with her brothers and her neighbors just like every other child in this country.  But because of her disabilities, for some reason she has to prove herself in order to attend school at her home campus.  Somehow her disability takes away the right to attend school with her siblings.  It is a deep and hurtful policy that this district believes in.  Yet, while I strongly believe that attending her home campus is Chloe’s legal right according to IDEA and that it is most appropriate for her to be serviced right here on her home campus, I am not willing to sacrifice another academic year to make it happen.

So it seems that our choices are to either make a real commitment to some real training that will lead to Chloe’s success here or to make the decision to move her to a place that better knows how to service her.  Commit to some meaningful, professional, and powerful training to take place before the beginning of next school year or to bus Chloe to a different campus.

And then there was silence . . . . and then there was an abrupt statement from the principal to continue on with the ARD / IEP Meeting.

I think it is obvious that Chloe should be allowed to attend school with her neighbors and with her siblings.  Able-bodied kids have that right.  Doesn’t Chloe have that right, too?

I don’t pretend to think that placing a child with disabilities is a simple thing.  It takes work.  It takes commitment.  It takes training.  It takes effort to do it right.  Chloe’s placement last year was unfair to many involved.  It was a frustrating placement for staff members.  But with the right training, it can be successful.  With the right training Chloe can succeed while sitting right there next her new neighborhood best friend . . . just like every other child in our neighborhood.

And bigger than all of that, inclusion is what supports our lifetime goals for Chloe.  We have goals and visions of her as an adult living alongside the rest of us, making a contribution to society just like the rest of us.  Our decisions today either take us closer to those goals or further from them.  As parents, we don’t have any choice but to push for our daughter to be included.

As I already said, we are still in disagreement and will meet back the first week of August.  Thanks for your thoughts and prayers for us regarding this meeting and this decision.

One Man Band

Oh, how I wish I had eyes in the back of my head.  And a video recorder in those back-of-my-head eyes!  Yes!  That’s what I need!

You should know that my kids and I love music.  We especially love worship music.  We always listen to our local Christian radio station, KLTY, when we are in the car.  And we sing along like crazy!

And have I mentioned that Elliot is playing the drums?  Yes, he started lessons in March and is quite good.  He is playing percussion next year in the junior high band.  He will oftentimes play the rhythm on his knees while we are all singing at the top of our lungs in the car.

I’m sure we’re a sight.

If I am distracted with something else, and I don’t have the radio turned up very loudly, then it will never fail that Zippy hollers at me to turn it up.  But usually before he asks me to turn it up, Chloe starts chanting, “UP!  Up!  UP!” and pointing her skinny little finger to the sky, demanding that I turn up the tunes!

We do really enjoy music.

There is one particular song that the station used to play that begins with this fun little ukulele ditty.  Each time the song comes on, I pretend to play a little uke and do some smart little motions as Zippy and I are singing at the top of our lungs.  We do not, as a general rule, play pretend instruments when we sing in the car, but this particular ukulele part especially sets the mood.

Well, the other day during a short car ride, I saw some movement out of the corner of my eye.  Chloe was playing a ukulele — or was it a guitar — to a totally different song.  And then as I stole quick sneaky glances, she proceeded to play the drums on her knees to the beat of the song.  And, oh, look now!  She was playing an air trumpet!  And she finished the show with a little violin performance!  Oh, me!  I was silently cracking up and couldn’t wait to tell Elliot about Chloe’s extensive instrument use during this car ride!

I love to hear my kids sing.  It really does warm my heart to hear my 3 kids burst into song while we’re on the highway!  Chloe has her little humming parts — usually humming the echo parts of songs and even harmonizing at different parts.  Some of the songs go so fast and have so many words that Zippy stumbles over the words, but he keeps on and keeps on.  And I love that Elliot loves to have worship songs on his MP3 player and has no clue of the yucky pop music stars that other tweens and teens are listening to.

I love to hear my kids play instruments.  Both boys have recorders and go through spurts of playing them lots and lots.  I love to hear them making music all of the time.  And now with Elliot playing the drums, I get to hear him bang! bang! banging! on his drums in his room.  I love it!

I imagine that’s probably how God feels to hear us, HIS children, sing songs to Him.  Whether we are singing songs in church on Sunday, or singing songs in the shower, or singing while we drive down the highway — I have a feeling it makes Him smile when we sing to Him.  I think He enjoys it even when we sing off key and even if our beat is a little off.  He’s our Father . . . and He enjoys us, I think!

And if you see a van-ful of a happy little family on East Loop 820 singing and playing pretend instruments with not a care in the world — either join us or smile at us . . . but try not to laugh at us!  We are truly in our own element and having a ball!

Tap, Tap, Tapping

Rubik's Cube

Image via Wikipedia

Last week, Zippy walked into my room with his big-eyed, I-can’t-believe-I-just-did-that look on his face.  I automatically brace myself.

In the past, that look has proceeded his telling me that he just broke one of my expensive decorative baskets into a large pile of sticks.  Another time, he showed me a large “art” masterpiece on his wall drawn with Sharpie.  Still another time, he had cut a pile of papers into confetti-sized pieces.

If you don’t live with a child with ADHD, the above happenings may surprise you.  Unfortunately, these events are not surprising with Zachary.  And none of these events occurred as a result of rage or frustration.  These things happened on happy days during happy times of total impulsivity.  Zippy does these things without even realizing he’s doing them, and then he sorta “comes to” and is horrified at what he has done.  Yeah, fun stuff.

So last week when he walked in with his big-eyed look of self-horror, I again braced myself for the news.  In his hands were pieces . . . black plastic, maybe? . . . lots of pieces, some of which he was dropping. . . . what is that?  As he walked slowly towards me I could finally make them out — they were pieces of one of Paul’s Rubik’s cubes.  At first I thought maybe he had just popped it apart like we used to do when I was in school — you pop that thing apart, and then you can put it all back together however you want to; thus, “solving” the Rubik!  But, no, I noticed the pieces were actually broken.  This Rubik’s cube was history.  He poured the broken pieces into a pile on my desk.

“What happened?”  I asked.

“Tapping . . .” Zippy gently answered, hoping that explanation would suffice.

“Tapping!?” I wanted to know.  What the heck kind of tapping were you doing, kid?

“Tapping . . .,” he said again as he brought both of his hands together as though holding something. . . something large enough that you have to hold it with two hands.

“Tapping?”  I said again.  “With WHAT?”  I demanded.

“A baseball bat,” was his tiny, nearly whispered response.  He stood, awaiting my wrath.

“A baseball bat?”  I pondered.  “Sweetie, you weren’t tapping.”  All four of our larger-than-life eyes locked for several seconds while the realization sank in.  “Zach, you don’t tap with a baseball bat. . . . You weren’t tapping were you?”

“No,” he answered, quite disappointed in himself.

I motioned for him to go . . . just go.  And he left my room, defeated.  And I shook my head in disbelief as I dumped all those little broken pieces of the smashed Rubik’s cube into the trash.  I couldn’t decide if I was more appalled at Zachary for smashing something with a baseball bat in his room or at ME for somehow thinking it was a good idea to keep a baseball bat in Zachary’s room.

Hmmmm.  You live.  You learn.  The baseball bat needs a new home.

%d bloggers like this: