FABULOUS FIELD DAY!

What a blast!

Jonathan's school had Field Day yesterday. Parent's were invited, so how could I miss watching my little guy in action? It was very organized with tons of fun games and festivities, including water balloon tosses, relay races and tug-a-war.

Jonathan participated in everything, happily and willingly. He was part of the team in every way. He listened intently to directions, and joyfully cheered his team on.

One of the best things I witnessed was a game that they needed to pair up with a friend. Several students tried to be Jonathan's partner! He was not left standing in the middle of the field without a friend. I can remember my childhood The time when once I was the last person picked for a team. Not fun! But Jonathan is loved and accepted and wanted.

Does a Mama's heart good to see with her very own eyes!

I am...

Donna

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 yesterday, 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!

Donna

Letting Go...

As a Mom, I find that I'm often having to let go.
If I got a report card for Mommying, I'd probably flunk this subject. Letting go is not always easy. As a matter for fact, sometimes letting go is extremely difficult, even when it is about seemingly little things.

I have dark hair...well, God is in process of highlighting my dark hair, but before He was doing that it was a deep dark brown, almost black. I always admired blond hair, and although I'd never change the color of my hair, I guess I'm a bit jealous of those who have beautiful blond tresses.

To my surprise and delight, my son was blessed with blond hair. He was bald for a long time, but when he finally grew hair it was BLOND! I found that cute little bowl/surfer cut fit him so well. I loved touching it. I loved looking at it. I loved it. Just a melt-your-heart-cute-kid look.

This was then...

Deep sigh.

As Jonathan gets older...the blond hair is changing to more like blondish brown.
Sniff.
He's also outgrown the little boy look of the bowl/surfer cut.
Sniff Sniff.

Yesterday, Mama gave up the cute look. He's now got a more grown up, tousled look. Very appropriate for a 9 year old...

This is now...How did I get so attached to a hair style? And why are my eyes leaking as I write this?
Because inevitably this is visual reminder that my son is not so little anymore.

We seek, teach, pray, hope, desire maturity in our kids. We really don't want them to stay 3 years old forever. But then there are times we mourn the fact that they are growing up.

So yesterday was one of those big days for Mama. I conceded.
Big boy look.

However it doesn't matter
how old he is or
how tall he grows or
what size he wears or
what grade he's in or
even the grown up new hair style...
I will comfort myself with these words...

He'll ALWAYS be my baby!!

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 yesterday morning 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!

Delightfully




Donna

The Touch of the Master's Hand

Many years ago I read this poem, and memorized it. I felt the words speak to my soul. The masses may judge on the outward appearance, but God sees with different eyes and hears with different ears, and HE knows the intrinsic worth and value. It's been years since I thought of this poem, and once again it has touched me, on a different level. How appropriate to relate this to our children with special needs. Many might view the child as less than desirable...but oh the amazing change that can be wrought by the Touch of the Master's Hand!

The Touch of the Master's Hand

It was battered and scarred,
And the auctioneer thought it
Hardly worth his while
To waste his time on the old violin,
But he held it up with a smile.
"What am I bid, good people", he cried,
"Who starts the bidding for me?"
"One dollar, one dollar, Do I hear two?"
"Two dollars, who makes it three?"
"Three dollars once, three dollars twice, going for three",

But, No,
From the room far back a grey haired man
Came forward and picked up the bow,
Then wiping the dust from the old violin
And tightening up the strings,
He played a melody, pure and sweet,
As sweet as the angel sings.

The music ceased and the auctioneer
With a voice that was quiet and low,
Said "What now am I bid for this old violin?"
As he held it aloft with its' bow.
"One thousand, one thousand, Do I hear two?"
"Two thousand, Who makes it three?"
"Three thousand once, three thousand twice,
Going and gone", said he.

The audience cheered,
But some of them cried,
"We just don't understand."
"What changed its' worth?"
Swift came the reply.
"The Touch of the Masters Hand."

And many a man with life out of tune,
All battered with bourbon and gin,
Is auctioned cheap to a thoughtless crowd
Much like that old violin.
A mess of pottage, a glass of wine,
A game and he travels on.
He is going once, he is going twice,
He is going and almost gone.
But the Master comes,
And the foolish crowd never can quite understand,
The worth of a soul and the change that is wrought
By the Touch of the Master's Hand.

by Myra Brooks Welch

So grateful for His Touch and

Donna

Autism...A Diagnosis of HOPE!

A few years ago, I was asked to teach a class for parents of newly diagnosed children. These families felt frustrated and had little hope for their children. I had an idea to make a PowerPoint presentation filled with pictures of my son, to document his progress. As he was growing up, we worked very hard to have beautiful pictures of him. Often (Always) we would take 30 - 50 pictures to get one we loved. The others were in files on our computer. Who wants to look at not-really-so-wonderful pictures that slap you in the face screaming there is something wrong with your child?

So in order to make the PowerPoint, I had to go through those files. What a shock! It became so obvious how far my son had come. You could see when LIFE was breathed back into my son. We are so grateful to Early Intervention for being there to help Jonathan. We are even more grateful to the dedicated teachers and therapists who have done more than required to help our kids. And we are ultimately grateful to the Lord for His touch on our precious son's life.

Today I finally figured out how to add music to my two year old PowerPoint Presentation (A miracle in itself!) and also learned how to convert the Powerpoint to a movie I could upload!

(First click the arrow to start the video. Then if you click the rectangle on the bar at the bottom of the video, you'll be able to see it full screen. Makes it way easier to see the pictures!)

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,
E

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. : )

Oh, one more thing....the Orlando Sentinel did an article on Jonathan a Thanksgiving of 2005. They have long since deleted if from their website, but it is still up on a sister paper's website. (Says Jonathan was "3" under a picture....but he was 5)

You can read it at:
Family faces struggle with son's autism: Rutland Herald Online

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!

I am...




Donna