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

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

A Dream Come True

I planned a Mario themed party for Jonathan at our house. I was concerned because we had very few RSVP's, but 9 children came, along with many adults. It was perfect. Jonathan was awesome! He never got too wound up. Played well with his friends. Appreciated his gifts and givers. Listened well to my directives.

Sitting here very sore and tired (gee...this getting old ain't no fun!) I am reflecting on the days I prayed my son could just play with another child. Just interact. Just talk with. Just look at. Just say, "Mom look at me".

He may still occasionally have some behavior issues at school, but he is happy. He honestly loves his friends. He plays and has relationships! He is kind and gentle with those who are fragile (one little boy, the brother of his best friend, recently had surgery to correct some problems with his legs. He was here tonight, and I noticed Jonathan showing compassion with him.) He can love and give hugs.

I AM SO VERY BLESSED.

I write this with tears streaming down my face.

Realizing how much God has given me.

How His hand has touched my precious boy's life.

At one point in his life, Jonathan knew nothing of the joy of having a friend. He honestly had no desire to interact with people. Now he thrives on it. What more could I possibly ask for?

Several years ago I had this very dream for my son. I envisioned him playing like the other children. I asked the Lord to help my son enjoy friendships and learn that people are valuable. And I am amazed...because I SAW my dream come alive yesterday. Amazed how God's grace touches our lives in so many ways.

I will forever be grateful and

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

A Dozen Thoughts - What Every Parent of an ASD Child Wish the 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...

I am...

Donna

I'd pick YOU!

I have this little thing I say to my son. I've said it for years. It's a Mommy thing. Something that he can hold on to during yucky days. You know...days when
the entire 2nd grade class is picking on him
and he got a 60 on the spelling test
and he has to write the entire report again because his writing is sloppy
and his tag bothers him but no one will cut it out
and he can't get the words out to explain how he feels
and there are no chicken nuggets left
and everyone else can have ice cream but him type of day.

I want my son to feel loved and wanted and know he is amazing.

One day many years ago I said to my son: "Jonathan, do you know if I lined up EVERY boy in the WHOLE entire world, and I had to pick just one to be my very own...do you know who I'd pick? I'd pick YOU!

This has become kind of a ritual with us. I don't say it every day, but at least a couple of times a week, when we're snuggling and feeling warm and fuzzy.

Last night, when we were cuddled on the couch, I began my little, "Jonathan, do you know if I lined up EVERY boy in the WHOLE entire world, and I had to pick just one to be my very own...do you know who I'd pick? And he answered "You'd pick me!" (it's evolved to the point that he answers the question now)

But this time he added, "Mom, are you sure you'd want me? Even though I have autism? Would you still want to pick me?"

Oh precious son of mine...
The answer is:
YES
every time
without a doubt
no hesitation
no thinking twice
no regrets
I'd
pick
you.

I am still

Donna
Blessed Mom to Jonathan Ryan
An AWEsome boy!

Heroes - Super Teacher to the Rescue!

I have found that heroes come in many forms. They don't all wear capes and fly through the air. What real heroes possess is the ability to rescue someone in peril. Today is the birthday of my favorite "hero". Though "only" a general education teacher, this woman definitely leaps tall buildings with a single bound in my eyes!

When my son went to Kindergarten (his first inclusion experience) he was originally placed with a teacher that did not want him in her classroom. She refused to follow through on any accommodations on his IEP, plus she seldom communicated with me. This resulted in a downward spiral of negative behavior issues. This teacher was required to send home a daily report. Most of the questions were only "yes/no" type, but there were a few blanks. One questions was "What was Jonathan's best part of his day?" This was normally not answered. I asked her to please fill in that blank, and she wrote back, "I can never think of anything good to write about your son". Talk about ripping a Mother's heart out of her chest and stomping on it.

After many IEP meetings, the District Special Ed Director stepped in and helped the principal decide to switch Jonathan to a different classroom. At that point an angel disguised as a Kindergarten Teacher asked the principal if he would put Jonathan in her room, she felt she could make a difference in his life. Jonathan was placed in her class, and the changes that we saw were nothing short of miraculous.

Ms Z possessed the right balance of love and discipline, she was creative in her approach, had a "never give up" attitude. She would often share with me a "golden nugget" about his day, something she found cute or endearing, that let me know she genuinely enjoyed my son. We communicated nearly every day. We were on the same team, truly working together, loving the same boy, seeking for him to grow into his potential.

Sometime during that spring I realized the gift that God had given my son, was just as much of a gift to me. The appreciation I feel for this woman cannot be put into words. She was and will always be counted as one of God's greatest blessings in my life.

By the way, Jonathan remained in K for an additional year with Ms. Z. He blossomed under her care, and for another school year, this Mama's heart was comforted knowing that her precious son was loved and wanted in the classroom, as well as home.

HAPPY BIRTHDAY

MICHELLE!

I hope that you have a very beautiful and special day, because you deserve it!

Because of the countless ways God's blesses our lives, I remain...

Donna

Practicing Surgeon - Patients Beware...

Last night Jonathan and I were talking about what he wants to be when he grows up. His list has included: Monster Truck Driver, Nascar Driver, Pet Trainer, Video Game Designer, Astronaut, Book Collector, and Paleontologist to name a few. But last night I mentioned how being a Doctor might be something he should consider for a few reasons. One is, it is a "helping people" job and another is they make quite a bit of money. That woke him up! "How much, Mom?" "Oh, more than $200,000 a year."

That settled it! Dr. Jonathan Cooper, MD, Surgeon has emerged. The boy has spent every waking moment practicing. Drawing pictures of people, "opening" different areas of their body, and closing them with various types of sutures, including (but not limited to) tape, bandaids and safety pins. Here are some examples of his victims...ah, I mean patients. They all survived and their families were very pleased.


I love how my son is progressing. He is thinking of his future, dreaming of his career, using his imagination, showing creativity.

A few years ago I found a sticky note in my son's permanent school files. It said, "Problem with mother. She thinks her son will be in general education classroom someday." Obviously, whoever wrote that never intended for me to see it, but neither did she take into consideration how love, prayer and therapy can create infinite possibilities for our children.

My goal is not to mold my son into a surgeon, but to help him dream dreams of limitless potential. I'm reminded of an old children's song,

I am a promise, I am a possibility
I am a promise with a capital 'P'
I'm a great big bundle of potentiality
I am learning to hear God's voice
And I am trying to make the right choice
For I'm a promise to be
Anything God wants me to be

What a great theme song for any child!

Because of the Hope He has given, I remain...

Donna

It's Not Autism...It's AWEtism OR

Life on the BRIGHT SIDE of the Spectrum!



Long ago, when my son was turning 4, we witnessed some dramatic changes in his life. We witnessed God at work, reshaping the way our son related to the world. While he was once alone on his island, he was beginning to allow people to cross the bridge and once in a while would even choose to cross that bridge into our world. I would often overflow with thanksgiving for the miracle I was viewing. At the end of the school year, I wrote this poem for Jonathan's teacher, who was so instrumental in helping us reach our son. People who read this poem encouraged me to make T-shirts with the message. They told me the poem gave them hope and helped them to see autism from a different prospective. The message is original and positive. Eventually I opened up a little online store. If you're interested you can visit it at www.cafepress.com/awetism.

I'd like to share the poem with you:

"It's Spelled Wrong"

A mistake has been made

The word doctors and neurologists

use to diagnose our children is autism

but it should be AWEtism

Just think...

Awe at my son's progress

Awe at each accomplishment

Awe that we've been blessed to be part of a miracle

Awe to see God's hand at work in my son's life

Awe to meet such wonderful people

Awe for each little step in the right direction

Awe for the love I never knew I had

It's not Autism, it's AWEtism!

Copyright © 2003 Donna M Cooper and The AWEtism Shoppe. All Rights Reserved.

www.cafepress.com/awetism

I am...

Donna

The Question...(every Mother who has a Child with Autism Asks)

So, as most of you know who are reading my blog (hey...does anyone really read this?) I probably don't need to state the fact that my 8 year old son has autism. But if you are new, you might not know, so now you do!

Jonathan has autism. Though most people who meet him would never suspect. He is social and likes people. Upon first encounter, you might think he was just a typical kid with ADHD tendencies.

I credit LI, EI and PI for the radical changes in my son (The Lord's Intervention, Early Intervention and Parental Intervention) It has, without a doubt, been a team of people who have made a difference in my son's life.

But there are still *things*. He gets stuck. Doesn't want to move to a different activity or topic. Or his brain is so focused on something, he will argue his point as if his life (or yours!)depended on it. Or sometimes, he presses a "mute" button in his mind, and he will not hear you, respond to you, or even acknowledge your presence.

He can appear to be "disobedient" but honestly, most of the time the non-compliance has roots in the fact he is autistic.

This is not to justify or excuse, rather to understand.

These past few weeks, in particular, have been filled with one outburst after another. I have put my parental abilities in the witness stand, with my mind becoming a very harsh judge, while my heart is feeling the scars of the overwhelmingly "guilty" verdict. Somewhere I must have done something wrong for my child to be so _______________. (Feel free to fill in the blank with any inappropriate things we deem unacceptable in childhood behavior) So part of the problem is the fact that my son appears to be so NORMAL in looks, that people forget he is autistic.

This has become a blessing and a curse. Because without a visual reminder of my son's disability, one tends to forget he has one!

In frustration I wrote this the other day. I posted it on a few message boards. I've received many comments from other parents of children with autism. They have expressed that I have put into words what they've been feeling for years. So now, I share with you:

If Jonathan were blind, would I expect him to see?
No, I'd give him alternate ways to "see" his world. Let him touch and smell. Describe it to him. Would I apologize for him? (Can you imagine..."Oh please forgive my son for his blindness"??)

If Jonathan were deaf, would I expect him to hear?
No, but I'd provide hearing aids and therapies for him to be able to function as best as he could. I would learn to be conversational in sign language so I could understand and know my son.

If Jonathan was disabled in such a way as he could not walk, would I be angry at him that he was in a wheel chair?
No. I think I would see the wheelchair as the best way for my child to enjoy life, and be able to participate.

Why then is it so hard for me to accept the behavior issues that comes with autism? Why do I expect my son to "be like the other kids" in regards to social issues? Why do I expect him to THINK and ACT like the NT Kids? Why does it embarrass and humiliate me when he doesn't?

Would teachers be saying, (if my son was blind) "Oh, gee, you're son couldn't identify his colors AGAIN today..."
Or (if my son was deaf) "No matter how many times we play the song, Jonathan refuses to participate in music. He just will not sing, not ever"
Or (if my son was in a wheel chair) "Once again your son would not walk to the cafeteria. I mean...all the other kids his age are able to walk and carry their own trays. But he just stays in his chair..."

But I am forced to hear about all the behavior issues, almost daily, and then feel like for some reason I need to do better, discipline more, talk more, find the magic wand that will "fix" him.

Why is it different for my son, than a child who is visually or hearing or
physically impaired ?

I am pondering...

Knowing God will show me the answers I remain...

Donna

Details...

This morning while getting ready for school, my son 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 this morning, 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 prospective.

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

Continuously and

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

Mourning into Dancing!

This has been a rough summer.

Jonathan has been booted (or nearly booted) from everything we've enrolled him in. Twice in the past few weeks, I've gotten calls to come pick him up, and told he was not welcome to participate. This has broken my heart.

My son is a wonderful 8 year old boy with high functioning autism, very smart and is usually pretty easily redirected. Following the last incident (he was asked not to return to church camp after the first day), he said, "Mom, we need to try all the camps in Tennessee to find one who wants me. I need to have fun someplace."

There is a community center about an hour's drive from my house, that we've taken Jonathan to once in a while. They have a "Kid's Night Out" on Friday nights once a month. So we drop him off for that, and have a date night. This place is awesome. Has several swimming pools, a huge gym, a bowling alley, etc. Plus, the new director interned teaching autistic children!! (The camp and KNO programs are not specifically for special needs, however). I called her,and asked if she thought Jonathan could participate in a week of camp. She was absolutely sure he was welcome, and had no doubt everything would be fine.

Here I am in a hotel room in Pigeon Forge, and my son is in the camp. He is loving it, and they are loving him. The director just called me to tell me how good he's doing. He beat all the kids his age in a swimming relay!! (Aquatic Man has appeared again!) He's cooperating, following instructions, being polite, asking permission, and making friends. HOW AWESOME IS THAT!

I cried after her phone call...this time because of joy. We are so blessed to have found this place. Does a Mama's heart good!

My goofy son trying to look like a shark!

I am...

Donna