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

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

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

You've Got to be Kidding!

Yesterday was a whirlwind. No, actually more like a Tsunami.

A few years ago, my son could not leave the watchful eye of an adult for even a minute. You never knew what he might do! Would you believe?

• Climb to the to of the refrigerator to get to the cookie jar? (18 months old)
  
• Leave his bedroom to roam the neighborhood at 2:00 AM? (at 2 years old!)
  
• Attempting to cut the cat's tail off so it would look like the manx kitten he petted earlier in the day?
  
• Line up 100 VHS tapes like a roadway through the house in ALPHABETICAL order (at 4 years old!)?
• Escape over the ledge of an indoor play area at a mall to run barefoot to Sears? (When Dad found him, he was waving, going up an escalator.)

These are just a few of the *joys* we've experienced since our son was born.

However, in the past few years, he's matured. I can let him play downstairs while I cook dinner. He will be content playing with Legos, or on the Computer or Wii.

Yesterday, however...he reverted back to the days of needing to be jailed WHOOPS, I mean gated in his room.

In 2 short hours of being home from school he was able to:

• fill the Downy Ball with soap
• try to use the back of the recliner as a balance beam
• eat string from his pocket as a between meal snack
• purchase something on ebay (I left the browser opened, with my sign-in info filled in)
• And scale to new heights, reaching an RC heliocopter on he top shelf of a 7 foot tall bookcase.

The last item on my list was the last straw. HOW DID HE MANAGE TO GET TO THE TOP SHELF OF A 7 FOOT BOOKCASE?

So as I was in the height of my frustration, I asked, "Did you climb it?"

Looking horrified, he replied, "NO! That's dangerous Mom!"

"Well, how DID you get it?"

"Oh, that's easy...see, I climbed up on the chair with the wheels in your office, rolled over to the door between the office and the den. Then I grabbed onto the top of the door of the Den, pushed off the rolly chair so I could swing the door over. I scaled the door to get the the end, then holding on the top of the door with one hand, I balanced on the door knob, and I reached the heliocopter, and jumped down!"

"And you think that is safe?"

"I didn't get hurt. Maybe I'm a super-hero in training or something."

Was it a full moon? Did he drink a Coke? Eat some cheese?
Take too many vitamins?

A few years ago I wanted to send an idea to Little Tikes. You know, the people that make the wonderful children's playhouses and climbing gyms. I was thinking there may be huge market for a Little Tikes Jail, where only Mom holds the key. Perhaps I should have followed through. Might have a pretty good bank account by now, not to mention a break once in a while.

Lest I get angry mail...
I'M JUST TEASING about the jail.
And you all know I love my son mega much. There are just those days, and yesterday was one of them!

Needless to say I am



Donna

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. (See the "2 Birds + 1 Stone = Poor Boy" post from a few weeks ago) But it can also make for humorous times....like the one I had today.

This afternoon 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"

To which he replied, "Well come on then. Let's take a walk around the corner!!"
Gotta love it!

I'm still...

Donna

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

I am continually and

Donna