Archive for November, 2011

Temple Grandin — the Movie

Temple Grandin (film)

Image via Wikipedia

Before reading any further, if you’ve never seen the movie “Temple Grandin” then go right now and get a copy of it and watch it!  (Your public library probably has a copy of it.)  It is a powerful, well-made movie about the life of Temple Grandin, a woman who has autism.

With the amazing prevalence of autism in the last years, it is pretty much a given that each of us knows at least a couple of people whose lives have been affected by autism.  But even bigger than autism, there are some issues that Temple deals with that are more universal within other disabilities.  Two of my children clinically present in ways similar to autism.  The movie hit close to home and brought me to tears several times both times I’ve watched it.  We can all learn something from watching this powerful movie.

One of the first things of note in the movie is the way that Temple takes in new surroundings.  While a typical person can walk into a room where multiple activities are occurring and never notice the individual sounds or the individual colors or even notice the subtle movement of fan blades or curtains blowing in the wind, Temple enters a room and takes it all in in an amazingly exaggerated manner.  The colors.  The lights.  The movement.  The sounds.  The textures.  The angles.  The workings of machines.  It is remarkable to notice how overwhelming just walking into a room can be for a person with such sensitive sensory systems.

It sheds such a powerful, moving light on why Chloe spends so much of her time with her arms over her face, shielding herself from things unseen and unheard by those around her.  It’s a wonder she can function at all if she’s half as sensitive as Temple is.

At one point in the movie, Temple explains, “Over stimulation hurts.”   That one statement explains so clearly why we see Chloe and Temple and many other children who we see “act out” or “exhibit behaviors” that we think are inappropriate.  Perhaps their sensory systems are completely overworked and they are just about to explode from all of  the stimulation.  I’ve never seen it more clearly depicted than it is in the movie “Temple Grandin.”  I bet people who see and understand the movie will never react the same way toward a child who is overstimulated.  Again, it is powerful and life-changing to have just the smallest glimpse into the mind of someone struggling like this.

The next thing of note to me is what a different learner Temple is.  You discover throughout the movie that Temple is very intelligent and is considered a genius as she unveils completely new concepts in the field of animal husbandry.  But most of her childhood and even college education, she is misunderstood and underestimated simply because she is different.  And as her mom must have repeated as her mantra for all of those years, it is important to recognize that Temple and other children with different abilities are “different . . . not less!”

Temple had a high school teacher who recognized her for the smart girl that she was.  He appreciated her mind and her person and invested in her.  He even took chances by going out on a limb with his colleagues as he tried to explain Temple’s potential and thought process to them.  No one really ever seemed to “get it” besides this one teacher, but thankfully this one teacher gave Temple some powerful mental tools and strategies that she utilizes throughout her adult life.

What a powerful reminder of how important our children’s teachers are in their lives.  And it is a powerful reminder to me as I interact with children — I may be the only one who will understand them and empower them!  Wow!  Bless that teacher’s heart for being such a kind soul and “angel” in Temple’s life!

I also loved how that teacher somehow knew right-on how Temple’s mom worked — how she ticked, what she was thinking, and the things she was struggling with.  Did he love someone with a disability?  Or was he just a sensitive, aware person who had a powerful way of relating?  I’m not sure, but his words to Temple’s mama at a very difficult time were so sweet and right-on.

Another powerful thing for me is Temple’s Squeeze Machine.  Without giving too much away, Temple discovers a way to give herself deep pressure that calms her when her system is about to explode either with emotion or frustration or overstimulation.  The first time she gets in the machine and begs her aunt to squeeze her is such a moving scene.  To realize the desperation that she was feeling and was literally begging for release and comfort is something not easily forgotten.

I can definitely relate to the Squeeze Machine.  Zachary is a kid who seeks deep pressure and is thoroughly comforted and calmed by it.  Seeing Temple’s reaction in her Squeeze Machine makes me think of Zach the first time his occupational therapist put him in the blanket swing when he was 3 or 4 years old.  The blanket swing is basically a thick stretchy nylon bag that hangs from the ceiling.  Zach climbed in that swing and stood on his head in it.  The blanket acted as deep pressure therapy for Zachary from head to toe, and the amazing deep sigh of relief and release that came from him was so amazing and so powerful.  I had never heard a sound like that ever.  I remember the therapist and I cried tears at getting to watch Zachary experience a calm that he had been seeking for years.  So while some people may watch Temple in her Squeeze Machine and be amazed and weirded out by it, I 100% understand it and understand its calming effect on her.  And it was another part in the movie that brought me to tears.

Temple’s mom had such a vision for her.  Even when doctors and teachers and administrators and family members questioned her wisdom and direction, Temple’s mom held tight and pressed on.  She was one of those pioneer mamas who I admire who fought this fight a long time ago when it was even less accepted than it is now.  When I think my battle is tough and that I’m the only one fighting it, I am reminded that I don’t have a clue of the isolation and heartache and struggle that mamas had 20, and 30, and 40 years ago who were fighting this fight truly alone.  I salute Temple’s mama!  What an amazing example for me!

Temple had family and others in her life who loved her and supported her and allowed her to truly be Temple even when it was uncomfortable.  Temple had a friend whom she could finally connect with.  She had an aunt and uncle who invested in her.  And I believe Temple’s strong, undying drive for success came straight from her mother and others who spoke into her and gave her permission to succeed, even if it ended up looking different to other people.

Yes, different.  Different . . . but not less!

Again, please, please, please see this movie if you haven’t.  Or even if you have already seen it, watch it again with eyes for understanding some of the struggles someone you love may face.

Finding Her “Voice” (Part Two)

Another fun example of Chloe’s learning to use her Proloquo2Go communication app on her iPod:

Chloe has been asking to put up the Christmas tree since August!  She really has!  It has very literally been an almost daily conversation since August!

Each time she would ask about the tree, I would remind her that first we’d do Halloween, then we’d do Thanksgiving, then we could do the Christmas tree.

She would oftentimes grab my calendar from the fridge and carry it around and look at all the days that had to pass before Mom would agree to set up the tree.

At some point I even pointed out to her the big, huge, green thing in the garage:  the Christmas tree!  It is standing upright and has a big green canvas bag pulled up over it so that it looks nothing like a Christmas tree, but she was quite excited to see that big ol green thing every time we pulled into the garage — that is, every time we pulled in the garage since September!!

Chloe’s excitement grew as Halloween came and went.  And then as we talked about Thanksgiving approaching, she knew it was getting closer.  She would most days get my calendar and either bring it to me to talk about it or would carry it off to her room to study.  Would Thanksgiving ever come and go???

Well, Thanksgiving evening Chloe, Paul, and I drove home in the evening while the boys stayed in Salado with their grandparents.  When we were nearly home, I asked Paul if he would mind carrying in the Christmas tree for Chloe before we went to bed.  He agreed.

Chloe was so thrilled as we cleared a spot for the tree to go — the same spot she remembered the tree being in in the past.  She stood in the cleared spot and danced in circles and waved her arms while she waited patiently for us to get the tree inside.

Paul and I carried in the big huge green thing that Chloe had watched longingly for months, and then Paul did the honors of unzipping the big green bag.  As he pulled the green cover off of the tree and revealed our beautiful Christmas tree, Chloe growled with delight.  She couldn’t take her eyes off of it.

At last she got Paul’s attention and showed him her iPod.

I feel excited,” she had typed.

Paul’s Daddy heart melted, and he just about exploded with emotion.

Excited.  Excited. Excited,” she typed.

So thankful that Chloe is able to express her feelings and her thoughts with her Proloquo2Go!  Keep it up, girl!

Finding Her “Voice” (Part One)

For those who don’t know, my nearly 10-year-old daughter, Chloe, is mostly nonverbal.  She uses some sign language, and gestures to communicate her wants and needs.  She uses some words that a few people can understand.  But for the most part, she would be considered a smart little girl with lots to say who is stuck inside her own body that won’t cooperate with her.

Chloe has had her iPod and Proloquo2Go for 2 years.  We have not been very successful with making it completely useful for Chloe.  She has gone through spurts where she uses it with some purpose, but then she doesn’t use it at all.  I could really beat myself up over it if I let myself.  It is just another area that I haven’t been as successful as I would’ve liked.  But lately Chloe is using it again — with purpose.  I wanted to tell you about a couple of examples.

A while back something happened and the individual people that we had entered into the P2G went missing — I’m guessing they were accidentally erased.  (Not the people themselves, of course!!  But their names and photos that we had entered onto the communication device were somehow erased.)  So specific people’s names weren’t in there anymore.  What was left was just the generic “mother”, “grandfather”, etc.

A few weeks ago, I sat with Chloe while we had a conversation about friends at school.  I added a few friends’ names onto the Proloquo2Go as well as some teacher names.  I also added Zippy and Elliot back in there.  But that’s all we had time for.  And then I totally forgot about going back in and adding all the other names back in.

Well, when we got to Paul’s parents’ house Wednesday night, no one was there yet so we went on in and got settled.  Chloe found her favorite play place in the bedroom by the windows and spread out all of the toys that she brought on the trip.

A while later, Paul’s mom came back to say Hi to Chloe and to me.  As is oftentimes the case, Chloe hardly even looked up from what she was doing.  At my prompting, she gave a minimal greeting to her Meme, and then she went back to what she was doing.  At least we thought she had gone back to what she was doing.

A minute later Chloe got my attention and showed me her iPod.  She had pulled up P2G and typed in the sentence, “I love you Grandmother.

She was trying to connect.  She wanted to say Hi.  She wanted to let Meme know she loved her.

Listen.  Listen to her.  Notice her!

Chloe’s message:  “Even if you can’t tell that I care, and even if you can’t tell that I love you, I do.  And here’s the proof — I said it.”

What a great use of a communication device!  Telling your loved ones how you feel about them!

And Now For the Halls . . .

We are decking the halls!

And it’s beginning to look a lot like

Christmas around here!

What a fun and festive time of the year!  I pray you are enjoying it, too!

Family Time

Wanted to share a photo with you.  Here we are on Thanksgiving day.  We had a great day giving thanks with Paul’s family in Salado, TX.  Our hearts and tummies are full.

Many blessings to your family from ours!

Thankful

 

Today I am thankful.

I am thankful for a family who loves me unconditionally and untiringly. 

I am thankful for a husband who supports me and upholds me.

I am thankful for a God who saved me and redeemed me.

I am thankful for friends who are interested in hanging out with me and listening to me.

I am thankful for people who pray for me and for my family.

I am thankful for a warm, dry, and comfortable house.

I am thankful for my clean carpets.  (Thanks, Dad!)

I am thankful for a fun and special other family — my in-laws — who entertain us and love us.

I am thankful for lots of yummy food to fill my tummy.

I am thankful for the children’s ministry and the youth ministry at our church — love that people of God are speaking into my children’s lives.

I am thankful for a dependable vehicle. 

I am thankful for the good health of my family.

I am thankful for a happy home and a close-knit, life-loving  family.

And I am thankful for you.  Thanks for reading my blog.

I pray that your thankfulness list goes on and on and on . . . just like mine could.

Happy Thanksgiving!

Vision for the Future

Part of what we read to the team at last week’s annual IEP meeting (ARD meeting in Texas) was our life vision for Chloe.

I wrote a life vision for Chloe for several reasons.

First, a lot of people have a difficult time seeing past Chloe’s (and other’s) disability enough to see a person.  It is hard for them to see Chloe as a person with potential instead of just getting stopped at her needs and deficits.  A life vision helps people see past Chloe’s disability.

Second, at a school planning meeting, the focus is on Chloe’s education for the next 12 months.  While it is important to plan for the next 12 months, it is ultimately important for the school team to understand that we, Chloe’s family, are planning for her life.  These teachers may only have Chloe for one school year, but we are in this thing for the duration.  We have plans that stretch beyond the next 12 months.

Third, it is a very important reminder for us of where we are going.  We’ve got to have a goal and a destination.  It is the bar with which we measure decisions along the way.  If what we’re considering doesn’t keep us on the road for what we envision 20 years from now, then we need to choose differently.  Having a life vision for our children — especially our children with disabilities — helps guide our decisions and our choices today.

So I read our life vision for Chloe at the meeting last week.  It was well received and appreciated, I think.  And I think it serves as a way to remind everyone of the bigger picture of Chloe’s life and what lies ahead for her depending on our choices today.

I’m sharing our life vision for Chloe with you today.  If you are the parent of a child with disabilities and haven’t written a life vision for him/her, I encourage you to write a life vision for your child today.  It truly helps guide you as you make decisions big and small . . . and helps assure that you won’t lose focus of where you’re headed.

Here’s ours:

We have a life vision for Chloe.

This vision includes independence and value.

***

It is important for everyone who works with Chloe and supports Chloe to have a clear understanding of our vision for her, for it is this life vision that drives every decision we make for her today.

***

In general, we will have succeeded in preparing Chloe for a life of purpose if she can:

  • have meaningful friendships and relationships with whomever she chooses

  • be an active and  contributing member of her community

  • feel valued as a person

  • pursue her own interests and dreams

  • utilize resources to support herself

  • have a job that pays better than minimum wage

***

Until Chloe can better tell us what her dreams are, we are basing our dreams and visions for her on her current interests:

  1. Chloe loves music and anything electronic.  We see Chloe as an adult maybe working with electronics and perhaps running a sound board.  Chloe has a fine ear for music and is adept at working different pieces of equipment.

  2. Because of Chloe’s gentle spirit and love of animals, we also see Chloe maybe working as a veterinarian’s assistant and caring for animals that come into the clinic or that are boarded at the clinic.

***

As Chloe shares her dreams and visions with us, this list of possibilities will no doubt grow.  For now, these are some roles we envision Chloe in as an adult.

***

With every decision that we as Chloe’s family are faced with, we must ask the question, “Will this option get Chloe closer to the vision that we have for her, or does this get Chloe off-track for reaching these goals and visions?”  And in the end, if the decision doesn’t get Chloe closer to reaching the life that we envision for her, then we must adamantly reject that option.

Positive Vibes

Yesterday we gathered for Chloe’s annual IEP meeting — we call it an ARD meeting in Texas.  We had spent many hours preparing for this meeting.  I have a couple of incredible friends who work with me in preparing for meetings and fixing Chloe’s education, and we have all worked diligently in preparation for the meeting.

We gathered for the meeting, completely unsure of what it would hold.  Our last several IEP meetings have been combative and hostile — would this meeting continue in that?

Attending the meeting with Paul and me were my two friends.  (Remember I said I will never attend an IEP meeting alone.  No way.)  The four of us arrived at the school in our four separate vehicles about 15 minutes before the meeting was to begin.  As the school and district personnel arrived, they were sent on to the conference room while the 4 of us just waited in the lobby.  It was an uneasy feeling knowing that they were already in there meeting and getting organized while we sat, excluded, and watched the clock.  Finally 15 minutes after the scheduled meeting time, we were escorted to the conference room.  I did not have a good attitude.

But I must say that as we sat at that table and as we all — the school personnel and the 4 of us — took turns talking, asking questions, and reporting, I had the amazing feeling that sitting at this table was a team of people who had gathered for the benefit of Chloe — a feeling that I haven’t felt in over a year at school meetings.  What an amazing feeling it was!

I feel like the tone of the meeting was nice, pleasant, and good.  The teachers reported a TON of stuff that Chloe is doing for them.  To hear that she feels comfortable and safe enough with them that she is actually showing them some of her skills was an exciting feeling — a feeling of relief.

In the end, I had to adjourn the meeting before we were finished because they gave some information that I was not aware of going into the meeting — information that we need to process and plan for.  I wish I had thought to request it before the meeting.  But I asked that we adjourn the meeting and reconvene after Thanksgiving.  We will meet back Dec 1 to finish up this meeting.

I feel really good about things.  Sitting at the table were teachers who care about Chloe.  Both the general education teachers and the special education teachers obviously care about her, notice her, and value her.  The therapists at the table feel the same way about her.  I can’t tell you what that knowledge does to calm my soul.  Literally.  The hours following that meeting, my body and my spirit actually felt lighter and more at peace, knowing that the people who Chloe spends 7 hours with each day actually appreciate her and value her.

<sigh>

 

We still have a lot of work to do and a lot of things to talk about in the reconvene in a couple of weeks.  Praying that our team stays this positive and this eager.  I have more hope right now than I’ve had in over a year.  Cautious hope . . . . but HOPE!

 

Nothing Special

I cried with Zippy today.  It was report card day.  Most of you already know that report card day is NOT our favorite day.

Zippy got in the van and as quickly as he could, he dug out his report card to see how he had done.  He was NOT pleased.  He immediately started growling and crying and complaining about his Cs.  “All I make are Cs!!” he cried.

He was mad and sad and disappointed.  And, as always, I hated to see him hurting.

But then his anger and disappointment suddenly grew and exploded into a very emotional, painful cry as he yelled out, “I didn’t get anything special!  I didn’t get anything!”

He said it several times before I knew what he was talking about.

“She was folding up certificates and stuff, and I didn’t get anything!  I have always gotten something special! I didn’t get anything!”

He was heartbroken that he had not received the usual ribbon for achievement or coupons for a free kids meal at a local restaurant that he usually receives in his report card.  For the first time ever, he had just received a report card in his report card envelope, and he was devastated.  And the tears were flowing.

And as I watched him, my tears started flowing.  Nothing special.  He hadn’t gotten anything special.  Just a report card that he was really disappointed in.  And we were sad.

And I cried again tonight as I told Paul about it — that he was the saddest about not getting anything special.

But then I thought about our afternoon and evening.  He had recovered fairly quickly from his disappointment.  We picked up a friend from school when we picked up Elliot so that helped Zippy snap out of his sadness.  He was a little gloomy and moody throughout the evening, but for the most part he was really okay and had mostly forgotten his heartbreak.  And it probably helped that I made pancakes and bacon for dinner — who doesn’t like a dinner of pancakes and bacon to mend a broken heart?

As far as report card days go, this one wasn’t too bad.  And now we’re done with report card days for another 6 weeks or so.

I. can. wait.

Birthday Boy

Candles spell out the traditional English birt...

Image via Wikipedia

Today is my dad’s birthday!  We will celebrate him today!

He is my greatest fan, a huge supporter, a generous giver, and a fine encourager.  He is a man who loves life, adores his family, appreciates hard work, and serves his God.  He is an example for us — a fine example for my children.

When I told Chloe that Papa’s birthday was coming up, I asked her what Papa might want for his birthday.  She didn’t have any ideas.  I suggested, “Do you think Papa might like a book for his birthday, or do you think Papa might want kisses for his birthday, or what?”

Without a hesitation, Chloe puckered up into a great big kiss!  I think she’s got Papa’s number and knows exactly what he wants for his birthday!  🙂

Happy Birthday, Dad!

 

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