Christmas for Champions

 CHRISTMAS FOR CHAMPIONS


I know about Christmas and the birth of the Son
Who changed the world with a breath, He was the long awaited One

I know about Shepherds and Angels and Kings
About animals and mangers, and the carols we sing

I know about Santa, and his reindeer in flight
The tale we imagine on Christmas Eve night

I know about Frosty, his eyes made of coal
How he cheers young ones up, he's a happy ol' soul

I know about children who can't wait to tell
Santa their wishes and sing Jingle Bells

But some children I know, who are beautiful and bright
Struggle to find the words that are right

Loud noises and people make them anxious and scared
They're not fond of changes or white beards and hair

Their parents might ponder during this season
Did they do something wrong? Could they be the reason?

Their child is special, they know this for sure
A blessing to them with a soul that is pure

They've learned how to care, how to give, how to cope
They see with eyes of love, and that gives them hope

These parents I know face challenges each day
Lack of sleep, IEPs, they will make a way

For their child to succeed, and be all they can be
Their focus is clear, they love endlessly

My prayer is for families, who face this blessed time
Of year may they experience true peace of mind

Knowing God has a plan for their daughter or son
These parents are champions and the race they have won

So this Christmas my wish 'tis noble and true
God bless these Moms and Dads and their precious children too

© 2011 Donna M Cooper

Reading is More Than Words...

While weeding out Jonathan's bookshelves for our upcoming garage sale, I found many books that brought back such precious memories.  I used to spend hours reading to my son.  He loved books, and they were a bridge to his world in so many ways.  When I read, he calmed and focused.  He allowed me to cuddle with him.  We shared laughter and love.

The other day Jonathan said, "Books are boring".  Since he used to be passionate about reading, this statement made me feel sad .

I realized it had been quite a while since I had read to him regularly, and determined to change that.  Tonight I picked one of his favorite humorous books from long ago, and also a chapter book (plan was to read a short, funny, book from his younger days and then a chapter each night on something more age appropriate.)

What a wonderful time we had!  He remembered and talked of these books as if they were long lost friends.  He showed great episodic memory!  His eyes danced as he shared memories of cherished books he loved. He was delighted with our new project.

So, we're reading again.  Sharing.  Loving.  Making memories.  I'm hoping that this will re-establish his love of books and will also find new connections on our journey into imagination.  Actually I forgot how much I missed our times together!

It Makes Perfect Cents!

I wrote this poem for my dear son who often can only see things from one perspective.  I guess we all have trouble with that from time to time, don't we?  I color coded this for clarity:

Red: Person A

Blue: Person B

Black: Both together

IT MAKES PERFECT CENTS

                               

I hold up a quarter and ask what you see?

The face of a president is looking at me.
He was brave and wise and served our great land.
It's so obvious to me what you hold in your hand.

I look at the quarter and I am quite sure.
The picture I see is more like a bird.
An Eagle is posing, he's bold and he's strong.
Agree with me so we'll both get along.

I'm thinking that glasses may help you to peek.
George Washington has no feathers or beak.
But surely, my friend, you notice the wings?
How could a president be seen with such things?

It's a bird!

It's a man!
We can't understand.
We look and we see,
But we see differently.

How can this be?

I get it!  I know!!  We are both right my friend.
Now I'll explain so this disagreement can end.
The coin has two sides, I tell you, it's true.
Just flip it over, you'll see what I do.

On one side a man, our first president is there.
The other side, an eagle, with arrows to bear.
We each thought the other was out of their mind.
It was clear, we knew we were so right this time.

But some things have two sides that are right.

And two ways of looking doesn't call for a fight.

Each time you can see a quarter in view.
Remember some people see things differently than you.

 

Raising a Responsible Young Man

Always trying to think of ways to help Jonathan be more responsible, so I came up with a great idea! Every time he does something spontaneously responsible, he can put a mark on the white board....and I'll pay him a dime for each mark at the end of the day.

Explaining the plan to my son, along with some examples. Things like...closing a drawer after you open it, putting away your dishes after you eat, putting your trash IN the trash can (rather than leaving it on the lid of the trash can). Those kinds of things. 

He thinks it is a great idea.  Dollar signs flashing in his eyes. What an awesome motivator!!  Surely this will make a responsible young man, even if I need to bribe him a bit.

He goes over to a filing cabinet, looks at me with a mischievous grin. He opens the drawer and closes it. Then repeats it laughing. And again, adding "Chi-ching" each time. After he does it 100 times he stretches out his hand, and with a twinkle in his eye says, "$10.00 please."

My boy. Gotta love him.

I Will Never Forget the Way You Made Me Feel

                                         Can you see the love on his face?

"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."  Maya Angelou

This morning while trying to encourage my son to get ready for school, he instead, was glued to the pictures (snapshots of himself and his sister) on the wall in the hallway. He was using phrases like, "Ah, a trip down memory lane" and "A good time was had by all". (Whoever heard of a 10 year old boy say that says those kinds of things?) So I was somewhat amused at his comments. Then I heard him say, "I miss her sooooooooo much!" I immediately knew he was speaking of Ms. Z his Kindergarten teacher. 

He ran and hugged me and said, "Do you know what I want most for my birthday?" (which is April 12th)   

"Of course I do! Jonathan.  "The DS Pokemon White game you've been talking about, right?"  

To which he replied, "No Mom...I want one more hug from Ms. Zino."  

What an impact this woman made on my son. He is almost 11 now. Kindergarten was half his life ago, yet he still remembers her love in his life. Kudos to the educators that pour their love and life into our kids. They really can make a difference. And this young woman sure has.  He still thinks about her and yearns for her touch on his life.  He had a different Kindergarten teacher in the beginning of the year. That teacher was not inclined to make accommodations for Jonathan because he needed more time and energy than the average child to be included successfully. The first K teacher really could not be bothered.  Ms Z, however,  became fully involved doing whatever it took to help my son not only be successful but thrive in her room.  He was blessed to remain her her class the following year as well.   We both got pretty attached!

So grateful today to the men and woman who love our children and have life-long impact on them.  Their dedication profoundly effects, not just the children but the families as well. I know my son will never forget his Ms. Z. 

You can read more about our AWEtism experience by clicking: 
AWEtism....Life on the BRIGHT SIDE of the Spectrum

Rated "E" for Everyone

For some unknown reason, my son has shown a great interest in reading Video Game Ratings lately. He feels compelled to read and alert us to each one, and also explain what the rating means. Sometimes this is humorous, because he often will be very animated as he is explaining the details of the rating.

He came to me today with a new idea.

"Mom, I just figured out something."

"What is that son?" I inquired.

"Jesus' forgiveness is rated 'E' for EVERYONE"

Be still my heart!

Yes Jonathan...you are so right. 

John 3:16 says, "For God so loved the world that He gave His only begotten Son that WHOSOEVER believes in Him should not perish but have everlasting life."

Another "Jonathanism". 

And another visual aid to remember just how much God loves us.  I think whenever I see an "E" as a rating, I'll always remember that His forgiveness is rated "E" for everyone!

You can read more about our AWEtism experience by clicking: 
AWEtism....Life on the BRIGHT SIDE of the Spectrum

Where Would You Go On Your First Date?

From time to time I play Family Feud.   Occasionally, Jonathan will join me and we'll take turns answering the questions.  

The question came up:  "Where would you go on your first date?"

I answered, "Movie".   57% of those polled also said "Movie". 

"Good answer, Mom!"  he said with a high 5.

Jonathan's turn.

"I'd take her to my bedroom."

"WHAT???  NO!  Son!!  What in the world???  You NEVER EVER take a girl to your bedroom, Jonathan!!  Why would you take a girl to your bedroom???   (Knowing my son is still very innocent in anything to do with the birds and bees, I was really quite curious.  Had I misjudged his naivety ?)

"Why not, Mom?? That's where the video games are!"

"Ohhhhhh, of course!  The video games!!   

"But don't worry Mom, I'd let her win sometimes.  Then she'd keep playing with me."

Wise young man...

So much for that game of Family Feud.  I think we got sidetracked.  : )

You can read more about our AWEtism experience by clicking: 
AWEtism....Life on the BRIGHT SIDE of the Spectrum

He's a Poet and he Didn't Know It! (Neither Did I...)

My son decided to write some poetry tonight.  He just kind of whipped out the verse...giggling as he made it up:

"Gilbert was such a greedy glutton, as he gnawed upon a leg of mutton.

He couldn't believe his sea-blue eyes, when the leg kicked him by surprise.

Now he only eats rolls and bread, because he knows that they are really dead."

It rhymes...that is good.  I'm also impressed by his vocabulary. And his creativity.  But what strikes me the most is his seemingly planned humor.  I just love it!

And "they" told me he might never talk.  

"Look Mom, I'm writing poetry, and it makes people laugh"

What a guy.

A Team Player?

First let me start out saying that I LOVE MY SON. He has some wonderful qualities that I find absolutely intriguing.  I can promise you that life is NOT boring in our house.  If things seem mundane, in a minute or two it will change, without a doubt.

My son has come so far on this journey through ASD Land.  Once he was very much a loner, unhappy most of the time, unable to communicate even the simplest of needs. But all these things have changed.  He now yearns for friends and enjoys playing games and interacting.  He is no longer unhappy!  He is a funny kid, and enjoys life.  His joy often overflows to others around him, as he shares his latest joke, or amuses us with a crazy antic.  He's also able to share his thoughts as he's learned how to express himself, first with PECS and now with words. He is now conversational, with some word retrieval difficulty, but he manages to let us know (probably more than we want to hear!) what is on his mind and his likes and dislikes.

One thing, however, that my boy has not had great success with, is being part of a team. He's good with a few kids, but the complexity of actually functioning as part of a larger group escapes him.  He will typically zone out and not participate, or he will do "his own thing" without consideration for the others participating.  

Jonathan, much to our surprise, made a request to be on a soccer team.  He's not really very sports minded, but he was sure he wanted to play.  I contacted a few Soccer Teams trying to decide what would be the best fit for him.  Ended up registering him for an AYSO team.  Their focus is on fun, good sportsmanship, and everyone playing. Not so much on competition and winning.  This is not a special needs league, but they are aware of Jonathan's "Quirks and Perks" and were very accommodating to include him on a team.   Due to some clerical errors, we started late, so he only had 2 practices before the first game.  

With very little experience in playing, I wasn't sure what my son would do during the first game. My hope was that he would not run the wrong direction and score for the other team.

Amazingly, Jonathan was totally into the game.  He enthusiastically played, congratulated others when they made a good play, he focused on the ball, successfully passing it a few times to another player,  and did his very best for the entire game.  He did not even have a melt down that his team did not win. Even more of a shock was that he's actually pretty good at playing Soccer!  Here are some pictures from the game:

 

When we were leaving, several boys called him by name and said they were looking forward to seeing him at the next practice.  He ran over to them, gave them a high 5, and came back to me with a smile.  He's part of a team!

We've faced many issues over the past 10 years, and have found ways to conquer or adapt or learn to cope with things that are not "natural' for my son.  I think the "team" thing is on the docket for this year.  Soccer is the tool to learn how to be part of a team.

Life is teamwork.  Being part of a team is a good thing. A very good thing.

You can read more about our AWEtism experience by clicking: 
AWEtism....Life on the BRIGHT SIDE of the Spectrum

A Holy Scrubby?

A Holy Scrubby.

I promise this is not one of those “seeing Jesus in a piece of toast” proclamations. But this is my son's recent explanation of some of the spiritual things he's been contemplating.

One night after Jonathan had his bath, and was tucked into bed, he came out to the living room where I was typing on my laptop. My first impulse was to tell him to go back to bed, but there was something he really wanted to share, and I decided to give him permission. I'm so glad I did.

He started by telling me that he was in his bed thinking about Jesus. (That is a good way to get my attention!) He continued by asking me what I called the thing I used when I washed dishes.

A scrubby? (I really wasn't sure)

That was indeed what he was referring to.

He said, “I was thinking how Jesus is like a Srubby. One side is rough, and one side is soft. Sometimes, He can be hard on sin, you know, like the Bible Story about the men who were selling things in the temple. But there is another side of Him that is soft, like when you need a friend or you're sorry you've done something wrong.”

My son, the little boy with autism, who did not understand a word I said until he was 3, is now thinking deep thoughts. I wondered if he would ever understand anything about God's love. Now, he is able to think and express his thoughts about God's love with me. Profound insights. Awesome truths.

Yes, Jonathan, Jesus is like a Scrubby.

For me, washing dishes will never quite be the same again.

You can read more about our AWEtism experience by clicking: 
AWEtism....Life on the BRIGHT SIDE of the Spectrum

How Many Apples In One Seed?

"Any fool can count the seeds in an apple. Only God can count all the apples in one seed."
Robert H Schuller

I read this and remembered how the "experts" told me that my son might never talk or know I was his Mama. I was advised he might never have a meaningful relationship with us, and we needed to prepare ourselves for the possibility of autism having a profound effect on him in every way. One Neurologist told me my son was most likely mentally challenged as well, and that I would do my family a service if I found a nice home for him and tried again.

These people might have been well meaning. I'm sure they were attempting to get me to face what they felt was reality. But these professionals were counting seeds.

Thank the Lord, I did not heed their counsel.

Instead, I listened to God who told me NOTHING was impossible! I read how God could do exceedingly, abundantly above ALL we could ask or even think. Then I remembered God's promise that His plan was to give me hope and a future.

Occasionally I stray from keeping my eyes on God's Word, and the fear of the “what ifs” will plague my heart and mind. But I reset my focus on God's promises, and remember how far my precious son had come and once again my hope is renewed.

God has done a wonderful work. The days, weeks, months and years have only resulted in bushels of fruit. Despite what we were told by experts, our son, Jonathan, has grown into a fine young man. Compassionate, creative, bright, social, conversational and loving. He not only knows I'm his Mom, he broadcasts it. What a joy and blessing he is to us.

God has allowed me to be part of harvesting some of these apples. There is actually quite a nice orchard growing now. I am grateful.

Taking Care of God's Birds

Early this morning while waiting for the school bus, Jonathan and I were bird-watching from our deck. He took great delight in spotting them, and trying to decide what kind they were, and whether they were male or female. We threw out some bread, and different birds took turns pecking at their breakfast. Jonathan was very quiet, only speaking in a whisper as he said, “I feel so special that God let me take care of His birds this morning.”

Sweet boy with a golden heart.

The more I pondered his statement, the more meaning it had to me. Not only for my son to express his gratefulness to God, but also that he was showing signs of a caring person, not just looking out for his needs but the needs of God's creatures.

We should all be “taking care of God's birds”. Perhaps the care you show your “bird” is patience as you care for your son or daughter on the spectrum, or helping an elderly relative. Maybe it is making cookies for a lonely neighbor or teaching a Sunday school class. We need to look for the “birds” God sends to us and do our part in taking care of them.

Perhaps, at least in my life, every time I see a bird, it will be a reminder to me.

Noticing, caring and serving.

God's lessons from the mouth of my son.

You can read more about our AWEtism experience by clicking: 
AWEtism....Life on the BRIGHT SIDE of the Spectrum

That Breaks My Heart

Ouch. That hurt...

I was trying to get some work done on my laptop and repeatedly asked my son, Jonathan, to lay at the other end of the couch. He was trying to snuggle, but he has a tough time sitting still, so it was more like cuddling with a windshield wiper. Somewhere around the 20th time I asked him to move, my request had a certain "tone" of OBEY NOW!

He looked at me with a very disappointed expression and replied,

"Mom, you really break my heart when you don't want me next to you."

Oh, baby... I'm so sorry.
Nothing is more important than taking time to let you know you're loved.
Nothing.
Not paying bills or
Responding to emails or
Reading blogs or
Teaching an Online Course for UCF or
Ebay or
Facebook.
Forgive me for acting like the most important thing isn't the most important thing.
When you were 3
You did not want to cuddle or hug.
I prayed that you would learn to enjoy being loved.
Now you do
And I tell you to move away.
Shame on me.
Forgive me, honey.
Someday, you might think you're too big to cuddle.
So I will remember to cherish
Every hug
Every kiss
Every moment
Every day.

You can read more about our AWEtism experience by clicking: 
AWEtism....Life on the BRIGHT SIDE of the Spectrum

Running With A Torch

"Running with a Torch"

Where does your imagination take you when you read that?

I'm sure you think of the beginning of the Olympic games, where Running with the Torch has become a historic event. Those who are chosen feel privileged as the throngs of people cheer with anticipation as our athletes seek to push themselves to reach their dreams. Hard work and endurance are awarded by bronze, silver and gold.

Indeed, I beheld with my own eyes, Torch Running of a Different Kind.

While relaxing watching TV with my husband, and my son was content playing on the computer, I easily could have missed my torch bearer as he whooshed up the stairs and down the hallway. My "Mommy Gut Instinct" was alerted, as I summoned my son. He did not immediately appear, which means I must heed the questions racing through my mind.

"Jonathan! What is going on? What did you have raised over your head? And where did you put it?"

I sure was hoping that what I thought I saw, was not really what I saw. But alas, the confession only confirmed my vision.

"Well, Mom, see...there was a problem with the potty downstairs, so I got that thing from the upstairs bathroom, and took care of the problem. It's fine now, really...there isn't much damage to the bathroom. I did good."

Yes...the "torch" indeed was the Plumber's Helper from the upstairs bathroom. And the dripping of water all through the den and up the stairs and down the hall, not to mention IN my son's hair was from the "problem with the potty".

This reminds me of the hundreds of times Jonathan has taken it upon himself to "fix" a problem. It really doesn't naturally occur to him to ask for help. Never has...not sure it ever will, but I can hope. After a gazillion times of Mom and Dad saying "Just ask" perhaps one day he will.

So I have learned to rely on MGI (Mommy Gut Instinct). When I "sense" something isn't quite right I become like a secret agent on an espionage mission. Inevitably I find my son immersed in some plan or project I would object and forbid. (Notice the word "immersed" was used. No pun intended.)

The surprise his time, however, he DID fix the problem, and there was little evidence of a disaster.

Except of course for the trail of potty water up the stairs and down the hall.

Anyone need a plumber? I know one who will work for a bag of Skittles. : )

The Details - Jonathan's Perspective

While getting ready for school, Jonathan said something very profound.

"Mom, the God who created the whole entire universe made me. I think He cares about details."

At first I laughed. Then I realized how truly significant this thought process was for him. For my precious son is autistic, and it is hard for him to grasp that anyone could feel or think differently than he does. But, at least for a brief moment, he saw him self as a "detail" God cared about....not the center of God's creation. His horizon is becoming wider.

He's not belittling himself, just putting things in perspective.

Yes, Jonathan...God does care about the details. : )

A Dozen Thoughts - What Every Parent of an ASD Child Wished Their Child's Teacher Knew

1) It is never a shock that my child has behavior issues. I live with him. I know.

2) Tell me 2 good things about my child when you have to tell me something bad. Think of it as a sandwich. Good/Bad/Good.

3) Let me know you like my child.

4) Realize that I often feel guilty that he is in your class, because I know he takes up so much more of your time and effort than typical children do.

5) Even though my child has non-compliance issues, I am not a wimpy parent. I work harder, correct more, brainstorm more, set up reward programs, try to be diligently consistent, read more, worry more than parents of typical children.

6) Include me in on decisions about my child.

7) Ask me what works at home.

8) Try to go easy on the homework. We have enough struggles around here! Understand, if you assign homework we may or may not be able to get it done.

9) If my son says the tag in his shirt bothers him, cut it out, you totally have my permission. If you don't cut it out, plan on a bad day.

10) Remember that my child is a few years behind socially and emotionally. He may need help remembering to bring home jackets and lunch boxes. I have extras, but when they start to pile up at school, send them home.

11) Try to use my child's strengths in the classroom if you can. It will make his self-esteem soar.

12) Applaud me for getting him to school on time. You have no idea...

The Funny Side of Autism

People with autism tend to take everything literally, which can make for difficult times. You have to explain every Idiom.  But it can also make for humorous moments...

Jonathan comes to me:
"Mom...I'm soooooooooooo hungry. Can I have a snack?" 
(It was 4:45, and if he had a snack at that point, he would never eat dinner.)

So, I said "No, honey, dinner is right around the corner" 

He immediately grabbed my hand and replied, "Well come on then. Let's take a walk around the corner!!"

Gotta love it!

2 Birds + 1 Stone = Poor boy

There are some things that, if I did not have a child with autism, I would never experience. Some are not fun, but most give me new perspectives, unique and often humorous.

Last night while out with my son, I mentioned a few things that I needed to do, saying that I was going to "kill two birds with one stone"

A look of horror came upon his face.

"Mom, you? You're going to kill 2 birds with a stone? I thought you loved birds? Why would you want to kill them?"

Before I could help him understand, he was crying for the twin precious feathered creatures that were going to meet their Maker at his own Mother's hands.

For those of you who don't know me...let me inform you that I have trouble with the idea of stepping on a bug. Everyone around me knows that to me life is sacred. Ask my husband about my rant on air guns and how a pellet may never touch a living thing. Well...you get the picture.

To my son, the thought that Mom was going to kill not one, but two birds, and that she was confessing she was going to do it prior to actually committing the act was more than he could handle.

All this is to say, people on the spectrum have a very difficult time with idioms. They think in concrete terms. As Temple Grandin puts it "they think in pictures". So he vividly imagined me extinguishing two helpless birds.

I explained to him the meaning a few times. That it didn't really mean I was going to kill any birds, it was just that I was going to be able to get two things done at the same time.

Did he understand? Yes, he did. Finally. Pshoooo.
We get home, he's ok. No more tears. 

Getting ready for bed, he brings me the empty box from his new shoes. He handed it to me and said, "This is for the birds, so you can bury them when you're done."

Bless his heart. I guess I need to choose my words more carefully!

The Butterfly Boy

When my son was young, it seemed as if autism was a monster controlling him. It was a scary time, to say the least. We were not given a great prognosis about his future, at best, his potential was unknown. Then, I noticed he became intrigued by butterflies, literally dancing with glee as he watched them. I remember once, him crawling inside a net basket, and as he came out he "flew" around the room. He was enacting a butterfly coming out of the cocoon! All this was prior to him having a single word he understood or could verbalize. Amazing.

At one point, there was this "aha" moment for me as I realized that a butterfly was very symbolic about my son. In 2 minutes flat, I wrote the poem below. I wanted to share it, and hope you enjoy!

The Butterfly Boy

copyright © 2004 Donna M Cooper

My son, my love

Once trapped inside a cocoon, alone in the dark

Yet, One more powerful than I was working a miracle

While I feared you would forever remain aloof, distant

The Creator of all could see the day when you would metamorphose

You broke from your small abode, no longer crawling

But fluttering in the sun, soaking up the rays

Bringing delight to all who would stop to gaze and reflect on the wondrous transformation

My son, I see your passion for the vibrant winged insect and I ponder...

Do you love them so, because they are so much like yourself?

You too were once encased, enclosed, hibernating

Now, you've emerged even more beautiful than I could imagine

Full of life, full of energy, full of love

Fly my precious butterfly, enjoy the world around you

There is so much for you to learn

Thank you for coming out of your cocoon

I am awed at the wonder of it all

And so very blessed to behold your beauty

Victory in the Lunchroom

There have been some issues brewing at Jonathan's school. It came to a place that it needed some Mommy intervention. I prepared visual supports and updated a stagnant token system to help my son become motivated to participate and cooperate. I went to the school  to share the new plan with the teacher. I ended up staying until noon, helping Jonathan to get back on track with our expectations.

The new supports helped Jonathan to change some of his behaviors and attitudes, and the morning went amazingly well. I was so proud of him!

One challenge he has had all year has been the lunchroom. He gets easily overwhelmed with the noise level and smells, and he would often have strange and unusual behaviors! The Resource Teacher decided to let Jonathan pick 2 friends each day to have lunch with, and eat at a smaller table. Since that decision was implemented, things have been peachy! (All I knew was that there were no longer bad reports about the cafeteria, but did not know the new strategy.)

As the children were lining up for lunch, the teacher reminded Jonathan to pick 2 friends. ALL, not a few or some, but ALL the children raised their hands and exuberantly asked Jonathan to pick them to sit with.

"Pick me!!! Pick me!!!!" they all begged. Jonathan picked 2 boys for Monday, 2 different boys for Tuesday and then said, "I guess I need to give some girls a chance Wednesday." HA!!

It was so comforting to me to see that all the children clamoring to spend time with my son! And I think it helps Jonathan's self esteem to know that all the children want to be his friend.

While we were at lunch, Jonathan interacted appropriately. Laughed, listened, asked questions of his friends and stayed on topic, even when it was a subject he wasn't so interested in. I was impressed at his ability to interact and converse in a much more sophisticated way than I've observed in the past.

It was a very good day!

Gentleman Training 101

I've been working on Gentleman Training 101 with Jonathan.

Teaching him to open doors and wait, and what to say after he is thanked.

 

It is working!

 

Mike was sick, so he did not go to church. Only Jonathan and I went. Jonathan held the door open for me as we were coming into our church, I thanked him, to which he replied, "My pleasure," With a sweet voice.

 

I had no idea there was a group of 10 or so ladies standing in earshot. There was a simultaneous "awwwww" and then they clamored to adopt him, with offers of candy.

When we got on the elevator Jonathan said, "Man, this gentleman stuff has great benefits!"

 

That's my boy!

I AM SUPER MOM!

You don't often hear me do this, but for this moment I'm going to be glowing in the dark, neon sign kind of thing, about my glorious accomplishment. Please excuse this brief moment of expressing the joy of my success.
 

There is about $1,500 worth of dental work that needs to be done in Jonathan's mouth. 3 teeth that need "baby" root canals and crowns and several other fillings. We've been trying to get this done since the spring, with no success. Been to 4 dentists. After shunning the first one due to outrageous pricing ($1,100), we go the the next and he made the first look like the Blue light special at K-Mart. This is just the dentist portion of the bill, not including hospitalization, since both these guys refuse to do the work in office. Then we find out that Jonathan's insurance is going to be having a dental plan. And it's coming soon! This IS actually dental insurance, with only a $15 co-pay. Finally in June we we get the word that the dental insurance is in effect!

However the kicker is actually finding someone who takes the insurance. We did. Jonathan had his teeth x-rayed and cleaned and an appointment made for treatment. We had to cancel that appointment because Jonathan was sick. When I went to reschedule the appointment, the office staff told me that the dentist had decided he would not be able to work on Jonathan. At all. The end. They just will not see him because he has autism PERIOD.

Back to searching again, and I find a pediatric dentist in Knoxville. This dentist is nice and, unlike Dentist 1 and 2, he is willing to try to do the procedures in the office rather than the hospital. Another issue, because way back when Jonathan was 2, he had a terrible reaction to anesthesia, so I really do not want him to have anesthesia (like put under) for baby teeth!

Finally it was D-Day (Dentist Day...hahaha). I talked, prepared, cajoled, bribed and begged my son to behave. To do what the dentist asked, when the dentist asked. To be the best most self-controlled he's ever been. That it was of utmost importance. A new Lego set was in the balance.

Jonathan goes back to have the work done. I hear him loudly conversing with the staff. I ask the girl at the front desk to let them know that I was available if they needed me. Twenty minutes later I see the dentist in the office. He lets me know that they have to do the work in the hospital. That there is no possible way he can work on my son's teeth in the office. Hospital is the only way.

I ask him if I can go back. He lets me know that I'm welcome to, but he cannot do anything more for Jonathan in the office. I ask again and basically plead for him to give it another chance. To let me be with Jonathan during the procedure. He reluctantly agrees, but is sure it won't help.

I was able to help Jonathan, to sit by his side and help him to find self control. Not only did Jonathan cooperate, but he came through with flying colors, and the dentist is willing to do the rest of the work as long as I'll come back with j.

Hallelujah! I don't often brag about my ability to work with my son, but today I deserve a prize. I guess God knew what he was doing when He picked me to be Jonathan's Mom.

When the going gets tough....just call Mom!

Remembering the Journey

I recently received an email from a man who's son was just diagnosed with autism and hyperlexia. He asked me about my son. The paths we've traveled. Therapies, education and programs we've experienced. What has helped? What we'd do differently.

PLEASE NOTE: Every child is different. I feel God guided me to the things that worked for Jonathan. I look at all the therapies available as "tools" to help our kids, and I am so thankful that we have a toolbox full! If something isn't working... there's another one to try!I IN NO WAY think this is the magical cure all for every child with autism. But the person who emailed me asked me specifically what we did with Jonathan...and this is our history. 

When I responded, it wasn't difficult to remember each year of Jonathan's life. The amazing people God brought our way to walk alongside us, to join us for a year or two. Many of them have left indelible footprints in our hearts. How can you not appreciate those who go beyond the call of duty for your child?
I thought I'd share his letter and my response with you. Perhaps you may glean something from our journey you can use on yours.

Donna,

I'm in the beginning of my journey with my son. He is 3.5 years old. Thank you for replying back.

I'm interested to know how long you've been on the journey? If you can change something during the journey, what would that be? Most of all, how is your son?

Thank you,
 
Hi E,

How long have I been on this journey? Forever! So it seems. Jonathan just turned 9. He is, my guess...2 or 3 years ahead of his peers academically, and about the same behind socially and emotionally. Though the exceptions to the "ahead" is handwriting. And there are often exceptions to the "behind" when he will show compassion or amaze us with a spark of maturity.

We kept him in K for an additional year. Partly because it was his first school year as an included child, and had a horrible no good very bad teacher the first half of the year, then transferred to the most extraordinary exactly what he needed teacher for the 2nd half of the year. They bonded (ME TOO!) and we became a team to help Jonathan be all he could be (to steal a slogan). Thank you Michelle!

I don't really think there is anything we would have done differently. Nothing major, anyway. I can tell you what we did, not that there are any duplicate children...but this path (even in my ignorance) seemed to be the precise set of things Jonathan needed to keep growing and making progress.

This might be a really long letter.

Jonathan was diagnosed (incorrectly) with a hearing impairment at 11 months old. Began Speech therapy. He was not babbling at all, did not understand a word we said, did not point or wave. We knew he was smart because he was already a whiz with puzzles and shapes, but nothing auditorally made any sense to him.

While he was in speech, they noticed a lack of balance, and no idea of how to catch himself if he went to fall, so he began physical therapy at 13 months, and OT soon there after for sensory issues.

At 16 months old, after his last set of immunizations, he disappeared into his own world. I honestly thought they would tell me my son was autistic when he was 11 months old, and received hearing impairment with a thankful heart. Better to be hearing impaired than autistic! But, they were wrong, and I was right...at 18 months he was tested by 4 psychologist and a few others, and the compiled and averaged score on his first ADOS was 1 point away from severely autistic.

At that point we enrolled him in UCP. It was a preschool for children with special needs. Because he wasn't learning language, at 2, they introduced PECS to him and he picked it up immediately. I was cautious, because, although I loved the fact he could grab a "Popsicle" picture and get what he wanted instead of screaming, he still wasn't talking or even understanding any words. (http://trainland.tripod.com/pecs.htm and http://www.polyxo.com/visualsupport/pecs.html)

I took a course called Hanen, which was amazing, and really gave me a handle on how to use language so my son could begin to understand. I highly recommend finding a place to take this, if you can. (http://www.hanen.org/web/Home/tabid/36/Default.aspx)

I also bought a series of videos (now they are DVD's of course) called Baby Bumble Bee. Awesome, wonderful, excellent investment! (http://www.babybumblebee.com/)

At 18 months he was in the toddler class at UCP 3 full days a week, receiving Speech and Language, OT and PT 3X a week, then we also got approved for Oral Motor Therapy and added that 2X a week. (He would not transition to table food) There we found the miracle Speech therapist who worked wonders with Jonathan. Somehow, Barb and Jonathan made a connection, and he learned so much from her. Sweet Barb...we miss you!

It was also there we realized he was reading. He was 2.5 and obsessed with numbers and the alphabet, preferring them over anything else. Instead of coloring with crayons, he would "build" letters and numbers with them. His first words were of course A B C.... and 1 2 3... "mama" came much later.

After evaluating my son, and taking into account all his strengths and weaknesses, I felt that his #1 core deficit was his lack of desire to be social. So many of his issues were due to the fact that he did really notice people or desire relationships. So I chose therapies that would cause an effective change in that area. Why would he want to talk, if he didn't want to share his thoughts? Or know what someone else was thinking or feeling?

So I chose to learn and implement a Floortime approach at home. It took months, but eventually I began to see changes. He began to interact with me and seek me out to play.(http://www.icdl.com/dirFloortime/overview/index.shtml)

All the while his interest in letters and numbers and words grew. Before he was 3, his favorite thing to do was matching pictures with words. I made file folder games to enhance his comprehension and reading ability. I made 5 folders with 10 - 20 pictures each of things he was familiar with. (Colors, numbers, toys, food, days of the week and months of the year) there were almost 100 words I was planning on teaching him. I had Velcro words for him to match the word to the picture. When I showed him the first folder, I watched with fascination as he matched 18 out of 20 ON HIS OWN! He was less than 3, I know, because he was still at UCP. He ran about the same average with each of the file folder games I had made.

I have no clue how he read. No one taught him. He just knew. I remember as a baby, how he would cry when I would shut a video off before the credits rolled. I know now he was already decoding.

At 3 he went to public school in and autism placement (8 - 3; 5 days a week) with a pull out to a preK language impaired class for 2 hours a day. He was beginning to talk. Only 1 word at a time, usually a color or number or letter; but also labeling. (funny thing was they had tried teaching him sign language, I had too, he never was interested, and he never ever signed...until he talked. Then he would often pair the sign with the word!)
I also developed my own way of teaching him language.
He had echolalia, both immediate and delayed. He would parrot back a question, knowing he was supposed to say something..but not sure what. I would say, "How are you?"he would say, "How are you". He would also quote videos, complete with the exact intonation. But he did not really have spontaneous language at that point.

After I realized he could read, I would use that! GOLD MIND!! I would right the answers to questions on index cards. I'd ask a question and hold up the card...BINGO! This is how my child learned to answer questions.

Soon it became much more than "Fine" (how are you?)
It evolved to reading sentences. We'd play games and he would have to say (read) "Mom, now it is you're turn" before I would take my turn. Or "Please give me the dice" before he could roll. All read off of index cards.

He still could not but 2 words together spontaneously, but he was learning language.

At his 4 year old IEP, one of the goals was to put 2 and 3 words together to make a sentence.

The summer before he moved to a VE (Varying Exceptionalities) 4 year old PreK class we found a church who accepted him into a summer camp program. He went 3 days a week, and was with typical children. His language exploded that summer! He surpassed the 2-3 word phrases before August, and was often speaking in sentences. We were delighted.

By 4 he was hooked on Dr. Seuss, and read everything the man wrote. The spring he turned 5 he noticed that children existed! Thus began his social life!

Flash forward. Jonathan just turned 9. He's been included in a General Education Classroom since he was 5. He is very bright, and somewhat bored in school. He always amazes us with his knowledge of subjects (he reads all the time, and remembers almost everything he reads) He is years ahead in math as well.

He is still behind emotionally. He sometimes gets "stuck" on thoughts and ideas he has, or something he really wants to do, it is difficult for him to "move on" without help transitioning. He is 100% fully conversational. He is very social, and just had a fantastic birthday party that NO ONE would have ever guessed that he was autistic.
My fingers are sore. LOL. I guess I got a bit carried away.

Feel free to ask me anything you want, if you have specific questions. As you see, I don't have trouble answering email. : )
Hope this help you as you consider your options. May the Lord bless you with wisdom and insight. I can promise you...it will be an amazing journey!