Archive for January, 2011

Not Me! . . yawn . . Monday

Back by popular demand is my Not Me! Monday post where I spill the beans on the embarrassing things I have not been doing all week.  It’s a type of confessional where we folks can freely laugh at ourselves and at each other!

I used to join up with MckMama and lots of other bloggers in Not Me! Monday, where we confessed many things that we absolutely did not do this week!  (Of course we didn’t!)  But I get the feeling that she isn’t do it anymore so today I’m not linking up.

I have not neglected my blog for an entire week!  Surely not! And I did not wait until 10PM to begin typing this post for my blog.  And I am not ready to crawl in the bed right now!  But I was not dead set on getting at least one post done today so that my faithful readers would know that I am still alive . . . .  Hmmm.  Not me.

I do not promise that I will post again tomorrow.

And that is surely not all that I have the energy to say . . . . Yawn!  ‘Night, all.

Hmmm.  Nope.  Surely . . . . not.

Not Me! Monday

Back by popular demand is my Not Me! Monday post where I spill the beans on the embarrassing things I have notbeen doing all week.  It’s a type of confessional where we folks can freely laugh at ourselves and at each other!

I used to join up with MckMama and lots of other bloggers in Not Me! Monday, where we confessed many things that we absolutely did not do this week!  (Of course we didn’t!)  But I get the feeling that she isn’t do it anymore so today I’m not linking up.

Here are a few things that have not been going on at my house this week:

I am not fighting the urge to go back to bed this morning.  Nope.  My body is not begging to lie down and hibernate since it is so cold outside these days.  (Texas cold, that is!:))  My electric blanket is not audibly chanting my name, beckoning me to come back to bed.  No.  Not me.  Not my body.

I do not have Beavis and Butthead‘s voices on my brand new GPS that I got for Christmas.  My sweet husband did not take the time to program those two lovely voices to direct me about town.  No.  Surely it’s not even possible to have voices like Beavis and Butthead on a GPS.  And the other day when I turned around after a few minutes and headed back home to get something that the kids had forgotten, Beavis or Butthead did not announce, “Uh . . . dude.  I think you’re lost.”

I did not spend hours last week on the phone trying to find a dog training place to send my dog off to.  I do not want the trainer to come get him and keep him away for at least two weeks.  And I am not expecting the trainer to bring me back a perfect dog.  And I do not want it to happen for less than $700!!  🙂

I am not thrilled to have a couple of new consultants on my team at Halle Joy.  It has not been a ball meeting them and beginning training with them.  And I’m not completely looking forward to doing business with them for a long time.  Nope.  Not me.

I did not turn on the wrong alarm for Paul last night.  He did not wake up extremely late all because of my mistake.  And he did not have to dash out of the house with no shower, no breakfast, and no lunch.  Oh, surely not. That would be so sad.  I am not so very sorry for my mistake, either.

How about you?  Anything you have not been doing lately?

Lastly, I can not think of a better role model for my 9 and 11 year old boys than this figure below.  Nope.  I am not going to search for a different voice to put on my GPS.  I am not very much struggling with having Butthead’s image on my blog.  I am not having an inner-struggle as I decide whether to click on Publish. . .

 

Beavis as The Great Cornholio.

Image via Wikipedia

I did not just hit publish and permanently put the above image on my ordinary days family blog.  No.  Not me.

 

A Bad Boy

Someone told my son that he’s a bad boy.  He has never heard those words from me.  I have very carefully chosen my words with him and have purposely protected him from hearing himself referred to as “a bad boy” because he is not a bad boy.

Zach makes bad choices.  (Don’t we all?)  Zach is energetic and hyper.  Zach has a hard time paying attention and obeying.  Zach has his share of issues.  But he is NOT a bad boy.

Someone told my son that he is a bad boy. Now he knows the phrase, and he owns it.  He repeats it over and over when he’s made a bad choice or when he’s messed up.

He acted disrespectfully.  “I’m a bad boy,” he repeated over and over.

He skimmed the book when he meant to read it.  “I’m such a bad boy,” was his mantra.

He forgot to take his medicine after I told him to take it.  “I’m a bad boy,” he said convincingly.

He got out of his bed three times in one night.  “I’m just a bad boy,” he again repeated.

Having the phrase and owning it for himself has caused him to lose all grace for himself.  It is nearly impossible for him to forgive himself and move on when he’s messed up.  He heard someone tell him that he is a bad boy, and he believes it.

And now, after having carefully chosen my words with this fragile child for 9 years, I am stuck with having to try to convince him that he is not a bad boy.  Unfortunately, when Zach gets an emotional idea in his head, it is there — strongly there — for a very, very long time.  For each time he actually voices his new mantra, I know it is playing in his head hundreds of times.  How many times will he have to hear it before he again believes that he is a good boy?

Lord, give me wisdom and strength as I encourage Zachary.  Heal his heart from those hurtful words spoken over him.

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  Psalm 139:14
For man is made in God’s image and reflects God’s glory.  I Corinthians 11:7
God saw all that he had made, and it was very good.  Genesis 1:31

International Day of Acceptance

Tomorrow, Jan 20th, is the International Day of Acceptance.  International Day of Acceptance is sponsored by an organization called 3E Love.  The mission of 3E Love is “to create and market products and services that embrace living life no matter the obstacles, and by doing so, educate society and empower those with disabilities to love life.”

We have ordered t-shirts to wear.  I have a magnet for my car.  And Chloe is passing out sillybands to her class.  We are ready to observe the day.  We are ready to celebrate the day.

International Day of Acceptance is a day set aside to celebrate life — namely the lives of people with disabilities.

To accept people with disabilities.  To embrace them.  Not to wish that they were more like us.  Not to feel sorry for them.  Not to ignore their disability.  But to fully accept them and to fully accept their disability.  To embrace them exactly like they are — for it’s their disability that makes them the person they are.

To accept people with disabilities.  To embrace them.  Not to wish they fit into our world a little more easily.  Not even to help them adapt to our world.  But to embrace them so fully that we adapt our world to fit them.

To accept people with disabilities by educating those around you.  Some people need help to know how to accept others and to know how to accept others’ differences.  The more you are accepting and the more you talk about being accepting, the bigger the impact you can have on those around you.  People will learn by watching you accept people with disabilities, but they also need to hear your words and your thoughts about how and why you choose to accept others.

Accepting people with disabilities; thus, empowering people with disabilities.  If our community is totally accepting of my children, then my children are empowered to enjoy their life.  When people in our community adapt their world to fit my child exactly like she is, then she is empowered to excel right now today.  Not waiting on a cure.  Not waiting on a miracle.  Not waiting on another day when people are more comfortable with her, but she is empowered right now today to live her life to its fullest.

That’s what International Day of Acceptance means to me and to my family.

Then and Now

*******

November 2001, I went to the pediatrician’s office.

“Doctor, my baby boy is really stiff.  And even though he’s 6 months old, he doesn’t move very much at all.  I think something’s wrong.”

After a quick exam, the doctor had an answer.  “Well, ma’am, your baby has cerebral palsy.”

“What?  But . . .  he . . . Well. . .  Please . . . ”

“I think there is a good chance he will be able to write his name.  And I think he will probably be able to walk.  But he will need a lot of extra help to accomplish those things.”

*******

Summer 2002, Paul and Elliot danced like crazy men in our living room in Grand Rapids, Michigan.  Elliot was nearly 3.  One-year-old Zachary watched from his exersaucer.  Zachary smiled and laughed while he watched his daddy and his brother dance.  Paul’s daddy heart ached deeply, wondering if Zachary would ever be able to join them in a crazy dance or if he would always have to be an observer.

********

These days, Zachary can write his name.  And he can walk.

And he dances a whole lot more than Elliot or Paul ever do.

********

And today he scored 6 points in his basketball game!

I am ONE. PROUD. MAMA.

********

IEP Meetings — Another round

In Texas they’re called ARDs.  Everywhere else they’re called IEP Meetings.  They are the meetings about a special education student that lays out the plan for the next 12 months.  These meetings occur at least annually; if you’re lucky (said with much sarcasm), then they occur more often.  Sitting around the table at most IEP Meetings are the general education teacher, the special education teacher, all therapists, at least one administrator, a parent, and a diagnostician.  Sometimes there are even more people at the meeting.

I will just say that no one sitting around the table looks forward to the meeting.  Parents dread it because it is either filled with info about how their child is not measuring up and/ or the parent is having to go into the meeting prepared to fight yet another battle for their child to receive the services he or she deserves.  The teachers and administrators dread it because it interferes with their regular schedule, they have to gather info and data to present at the meeting, and it so oftentimes just seems like a waste of time.  (BTW, I can speak for the teacher / administrator because I was a teacher for years and I am friends with many teachers/ administrators.  But I must also admit that I am speaking in gross stereotypes here, too, so if you don’t fit the mold, then please forgive me.)

We just finished another round of IEP Meetings.  Even though Chloe wasn’t due for her annual ARD until April of this year, we called an ARD the first six weeks of school because things were going so badly for her.  At that time we planned to sit down for another ARD Meeting after November to discuss Chloe’s reevaluations.  Also between ARDs, we’ve had several meetings and staffings to discuss Chloe and her needs and her placement.  So we’ve had more than our fair share of such experiences this year already.  (And, BTW, we will still have to go back to ARD at least one more time this school year as we improve some goals and objectives for her.)

I will not go into detail here today of the ins and outs of our latest meetings.  Suffice it to say that they have been somewhat intense and challenging; all of our ideas were not met with agreement; decisions were made regarding Chloe that will cause many to step beyond their zone of comfort and expertise; but large steps were taken toward what I believe is best for Chloe.  How’s THAT for the nutshell version?  I’m cracking up thinking of the details I’m leaving out. . . .  🙂

But what I wanted to do here today is to list a couple of the biggies that I’ve learned/ gleaned from the last few months — really the last few years.  I know many of you who follow my blog are parents of special education kiddos or are teachers or other personnel who find yourselves sitting in an IEP Meeting.  So here are some thoughts on Inclusion, Special Education Placement, Modified Curriculum, ARD or IEP Meetings, etc.

1.  Did you know that you, as a parent, can take a friend with you to IEP / ARD Meetings?  Yes, you can.  And I encourage you to do so.  I have taken a good friend of mine to the last several meetings.  I recommend that you choose (like I did) a friend who knows your heart and your desires, knows the ins and outs of special ed, is willing to stand up and fight with you if needed, and is familiar with your child and his / her challenges.  My friend spoke up in the meetings at times she didn’t agree or was unsure of what was said.  My friend took notes and pointed things out to me so I wouldn’t overlook things I wanted to address.  My friend met with me for hours before the meetings while we talked and planned about what I wanted to happen in the meeting.  I don’t plan to ever attend another IEP Meeting alone.  Don’t get me wrong, when I attended alone before, I didn’t just sit silently when I should have been speaking up, but there were times when I left from meetings wishing I had spoken up or realizing on the way home that I had forgotten to ask a certain question or something.  By taking a friend, there are 2 people with the list of agenda and 2 people remembering the issues at hand.  If for no other reason, it is just nice to have someone there with you since it sometimes feels like you are way out numbered.  I attended an IEP meeting a couple of years ago — I was alone against nearly 20 people at the table.  The district had called in lots of people to back up what they thought was best, knowing that I was in disagreement.  It can be very intimidating!  I highly recommend taking a buddy.

2.  Did you know that you can take a break in the middle of an IEP / ARD meeting?  I haven’t done this yet, but my friend and I had talked beforehand that if things got emotional or out-of-hand that one of us would call for a break.  You can go to the restroom or just go out into the hall to talk and cool off for a minute.  Then everyone just goes back to the table to finish the meeting.  If your ARD / IEP meetings are usually quick and easy, then a break probably doesn’t make a lot of sense, but for those who are sitting in meetings for 2, 3, and 4 hours, I encourage you to take a break.

3.  In researching laws on Inclusion, I (and my friend who happens to be quite a researcher, too!) found some great stuff.  It is my desire for Chloe to be included in general education classes with non-disabled students as much as possible.  We found some great info on court decisions pertaining to that very thing.  A big one stated that if it benefits a child to be in a general education classroom with non-disabled students, then that is where the child should be placed regardless of whether or not that is the best academic placement for the child.  Did you catch that last part?  Even if the child would be better serviced academically in a special education classroom, if the child benefits in any other ways from being with other non-disabled students, then the child should be placed in general education.  I’m claiming that court case for Chloe, but I also think that it speaks for every disabled child!  So again, an encouragement for you is that if you think your child would benefit from being in the regular ed classroom, then ask for it and push for it.

4.  Did you know that you don’t have to sign the paperwork at the meeting?  You can request a copy of the paperwork to take home with you to review before signing Agree.  The ARD / IEP Committee does NOT have to meet back in order for you to sign it.  You have 5 school days to return to the school and sign the paperwork without the committee having to meet again.  I have done this the last few meetings and plan to always do it.  There is no way to know for sure if everything that’s been decided and everything that’s been said is recorded correctly unless you read it with your very own eyes.  Whether those mistakes are omissions or typos or what . . . do you really want to sign Agree only to find out when you receive the paperwork that something isn’t right?  Be prepared to surprise and frustrate the committee by requesting time to review the paperwork — most committee members have no idea it’s legal.  But stand your ground and take it home and study it.  Once the committee knows it’s permissible and knows that is your habit, then at subsequent meetings they won’t be surprised and all will be fine.

5.  Perhaps the biggest thing I’ve learned from these IEP/ARD meetings is that the professionals at the table are NOT necessarily the experts.  Similar to how I used to be with doctors, at first I was all trusting with the professionals at my children’s school.  After all, they ARE the experts, aren’t they?  What THEY say is best for my child is probably the best, right?  NOT NECESSARILY.  Just as I learned with doctors — they are experts in their field, but they are NOT experts on my child.  I love, love, love doctors, but they DON’T know it all.  Same goes with educational professionals — they have an area of expertise, but my child is MY expertise.  And I have been surprised by the ignorance at many IEP meetings.  Now let me point out the meaning of the word ignorance so that I don’t offend someone.  Ignorance is not stupidity or meanness or refusal to do what is known.  Ignorance is the lack of knowledge or education — meaning they just don’t know.  Many professionals leading the IEP meetings of my children just don’t know the answers and just don’t know the options and just don’t know the law because my child is presenting them with a situation that they have never experienced before.  It is completely new ground for them.  Therefore, it is MY JOB as my children’s #1 advocate to know and understand the law and our options.  I have to be the expert because it is not a given that anyone else at the table will be.  So let me encourage you to do the research!  If you don’t know where to look, then contact someone for help.

Ok.  I’m stopping with that since this post has gotten so long.  Some other day I will continue my thoughts on IEP/ARD meetings, but I don’t want to run you off or bore you.

Let me also point out that the purpose of this post is NOT to bash my children’s teachers, administrators, and therapists; instead, my purpose is to pass on helpful information to other parents who are going through IEP meetings perhaps for the first time.  And for any educational professionals reading, maybe it will be helpful to hear the thoughts of the person across the table.  Let’s learn without being offended.

Feel free to leave me comments about what YOU have learned as you have gone through IEP meetings with your students or your children.

Not Me! Monday

Back by popular demand is my Not Me! Monday post where I spill the beans on the embarrassing things I have not been doing all week.  It’s a type of confessional where we folks can freely laugh at ourselves and at each other!

I used to join up with MckMama and lots of other bloggers in Not Me! Monday, where we confessed many things that we absolutely did not do this week!  (Of course we didn’t!)  But I get the feeling that she isn’t do it anymore so today I’m not linking up.

Here are a few things that have not been going on at my house this week:

I did not completely forget to do homework with Chloe one day last week.  No, that would be very scatter-brained of me!  Surely I would not just forget to do something so important.

I did not on the first week of “eating more healthy” feed my kids pizza for dinner one night and corn dogs for dinner another night.  No way!  Not me! Meals like that are so last year for us!  Meals like that are in the past for us — surely I would not have already fallen into fixing quicky, easy meals for my family.  Nope.

I did not tell Elliot to wear his dirty jeans one more day because I knew that he didn’t have any more clean ones in his drawer.  Ew.  I certainly would not do something so disgusting since I always stay completely on top of my household chores.  Nope.  Not this mama.

I did not drive my kids to school in my pjs one day this week.  No way!  Not me! That would be embarrassing and unacceptable.  And on that same day I did not return home and promptly crawl back into my bed after turning on my electric blanket.  Nope.

I did not waste nearly two full days this week –overwhelmed with where to start on my to do list.  Surely not! And if I did, surely I would not admit it here on my blog.  Surely I would deny wasting that much time and pretend to have accomplished much.

I did not threaten Chloe that I would return with “very loud instruments” if she got out of her bed one more time.  I surely did not promise her that the instruments would be so loud that they would make her cry.  Why, that would just be cruel to threaten such noise.  No, I did not threaten my daughter with loud noises to make her obey.  Nope.  Not me.

 

Jay Bird

I have a child who has an aversion to clothes.  I’m guessing I don’t have to tell you which child it is.  🙂

For the most part, on school days or church days he gets dressed just fine in the morning (I mean, unless having to be told to do so 307 times is not considered just fine).   Fine that is as long as he has a solid color shirt and pants with no buttons.  Snaps are usually okay, but some days nothing but elastic waist will do.  But, seriously, he usually does fine with his clothes in the morning.  Socks are oftentimes a different story, but clothes are not a huge problem on most mornings.

During the day, I hardly ever hear him complain about his clothes.  He doesn’t complain about them being itchy or heavy or awkward or hurting him.  Again, he seems just fine in his clothes.

However, nearly every single day when he gets in the car after school, he starts to undress.  Usually he only takes off his socks and shoes in the car.  But there are some days that by the time we make the 3 minute drive home from school, he is down to his undies by the time we hit the driveway.  On a normal day, he takes off his shoes and socks in the car, but by the time I come in the house, there is a trail of clothing leading to wherever my naked son is sitting.  He strips down usually to his underwear within the first minute he’s home.  On the unlucky (for the rest of us) days, he strips even his undies off by the time I even walk through the door and spends the rest of the evening buck naked.

I heard a friend say recently that they have a rule at their house that you have to wear a shirt to dinner.  I bit my tongue as I pictured my family at the dinner table . . . sometimes with one of us naked as a jay bird right there at the table.

I have mentioned our dog a couple of times.  He is still a puppy, I guess, and is a crazy, crazy dog.  The thing is unbelievable and jumps so high when he’s excited to see you.  He literally can jump waist high or higher on me — and he’s a tiny little thing.  Anyway, having a hyper, crazy dog and a boy with parts sticking out in the open sometimes proves to be surprising . . . humorous. . .  awkward . . . ummm, yeah.  Oftentimes when the dog greets the naked child, the rest of us yell in unison, “Well, then go put on some underwear!!!”

Just another ordinary day at our house.  🙂

Chloe’s Updates

How about a quick nutshell version of a Chloe update?  You game?  Oh, good.  I was hoping you would be.  🙂

We are still waiting to receive Chloe’s special needs car seat.  Medicaid has finally approved payment, and the doctor finally sent in the prescription, and someone finally drafted the letter of medical necessity.  The seat has been ordered, and we are just waiting for it to come.  Yippee!  We will be glad to have it after waiting for 4 months!  While the seat that Safe Kids gave us is a much better fit than her old seat, the fact is that it, too, is too small for Chloe.  Soon I will be posting a photo of Chloe in a seat that is actually safe for her to be in.

In the next week or so Chloe is going to be fitted for a new wheelchair.  Her old chair is so small that it keeps trying to tip backwards when she’s in it, and she drags her feet on the ground behind the foot plate.  She doesn’t use the wheelchair much, but she still needs it for riding the bus to and from school and for trips to the mall or to downtown, etc. that require a lot of walking.  Hopefully the process will move quickly, but I’m sure we’re looking at early April before she receives a new one.  It will also possibly be difficult to get Medicaid to cover the chair since they just paid for “seating” in her car seat.  Apparently Medicaid thinks a child only needs one or the other every 5 years, and we’ve only had this chair since ’08, and Medicaid just paid for a car seat.  Hmmmm.  Wish us luck on that battle.

Chloe will also start physical therapy at the clinic again next week.  She had taken a break, but the muscles in her neck are quite tight again, and her neurologist put her back in therapy.  He also scheduled more botox in her neck — the earliest they can do it is March.  Following the botox injections, she will be in intensive physical therapy to strengthen and lengthen her neck muscles.  There is a tiny tight strand of fiber in her neck that has not responded to botox, and the tightness is starting to pull her face — alter her face a bit by pulling down on her eye, nose, and mouth in that direction.  The neurologist is hoping (but not expecting) the rope of fiber to respond to botox this time, but if it doesn’t, then the plan is for the strand in her neck to be surgically lengthened.  The neuro doesn’t have a clue how it will be done or who would end up doing it (ortho?  ENT?  plastics?  general surgeon?), but he promised me he’d be talking to some docs and coming up with a plan.  Of course the easiest answer would be for the botox to be more effective this time and negate the need for surgery.  I will update you in a couple of months.

And believe it or not, that’s all I can think to update you on!

We’re just plugging away and chugging along!  🙂

Judgement and Isolation

People who don’t understand us . . . see a bad kid.  They think they see a discipline problem and bad choices.  They think they see bad parenting.  They think they see overly permissive parents.  Other times they think they see overbearing and strict parents.  They don’t understand us.

What they don’t see is that our child is hurting.  They don’t have any idea the current issues that we are dealing with or working through.  They don’t understand the depth of our child’s issues, anxieties, and struggles.  They have no idea what we or our child are experiencing on the inside.

They have no idea what’s it’s like to walk carefully on a cracked, frozen lake that may give under our weight at any moment.  They have no idea what it means to tread so lightly and to care so intricately for the cracks and the ice.

Because our child often appears ‘normal’ and okay on the outside, they forget the intense struggles constantly going on inside of him.  They forget that common experiences and activities are going to look a bit different for us.  We have to do everything a little bit differently to protect the ice.  Every single decision we make all day long is made to protect the frozen lake of our injured child, avoiding an all-out crash and painful splash while we are out in public.

But people forget or they don’t understand. And they give us disapproving glances.  Or they say hurtful things — to us and to our child.  They confuse our child by their disapproval.  They further injure our child with their words and their judgements.

That’s why it’s easier to just stay at home.  For between these four walls we find grace, mercy, acceptance, and understanding.  And at home we are protected from the judgements of others.

Thus, the isolation of having a child with special needs.

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