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"For I know the thoughts that I think toward you, says the LORD, thoughts of peace and not of evil,
to give you a future and a hope." Jeremiah 29:11 (NKJV)

Sharing resources, research, ideas, inspiring scripture, success stories and even failures...

Thursday, December 6, 2012

An Award, A Strange Pizza and A New Guiding Light

(no, not the soap opera...) To say that life has been insane lately does not even come close to describing it. Our family has been through some really intense situations in the past several months and I have been stressed to the max. BUT something AMAZING happened to me recently and I told, no, promised myself that I would make the time to write about it. I hope you find it is helpful to you in your journey on this puzzling path.
November 9, 2012:
With a deep breath and the deafening sound of my heart pounding I opened the door. In this room full of unfamiliar faces I scanned the horizon for what I was looking for. I found it hard to speak and even swallow, as my nerves seemed to have depleted my mouth of any possible essence of moisture. Yes, I was quite nervous! I was there with a sole purpose: to meet the young man who'd allowed me to feel safe to have hope again. What will he be like? Would he spare just a few minutes of his time to chat? My mind was racing with countless possible scenarios for the evening's events. I was at the Current Trends in Autism Conference right here in Massachusetts and the room was filled with not a single soul I knew (which doesn't happen to me very often in the autism world).

The sound of my cell phone ringing forced me back into reality, and, was I ever glad! Kerry Magro is an adult with autism. I wrote about him in my post titled "Star Struck" back in August. He was being honored that night with the Margaret Bauman Award for Excellence as an Outstanding Advocate for autism!!! {I can't, and won't, deny my admiration for this young man and the fact that I secretly stalk him online-- it's OK, he knows I'm his 'self-proclaimed groupie'} As I answered the call on my phone I recognized the voice I was so familiar with from Kerry's Korner video blog on the Autism Speaks video channel and the My Autism, My Voice website...

Something I could not have begun to fathom back in August was about to happen... and there he was: tall, slender, well poised, handsome and welcoming in his impeccable black suit. Expecting an awkward and formal handshake I walked closer to introduce myself and instead found myself embraced in a big authentic hug! As we started speaking it felt as if we'd been friends forever. The connection was instant and I knew I had just made a friend. WOW! Well, like meeting Kerry wasn't enough, he told me he'd traveled with his mother, Suzanne. I had read a letter that Suzanne had written and I knew that she'd walked in my shoes and had come out victorious on the other side. Industrial-sized wheels were turning in my head. I had to think about the BEST question to ask her. I had this one chance and I had to make it count!

Well, it turns out that none of my fretting, pondering and maniacal anxious anticipation was even necessary. All the eloquence I was struggling to muster was futile because Suzanne and Kerry are just a mom and her son, just like me and Nathan! They are two heavy-weight champions who fought this seemingly endless battle... and won! The more we spoke, the more I came to realize why I have this compelling drive to learn all that I can about Kerry. He represents what I hope and pray that Nathan will become one day. As we sat sipping drinks (which Suzanne treated ME to!) and shared hor d'ouvres the conversation somehow shifted to me and my life. I thought I was there to learn, to ask as much as I could and gather as much information possible like a little squirrel hoarding its feast to digest slowly in the future. Yet I was the one being asked most of the questions. The more I shared about Nathan, the expression on Kerry's face visibly changed. He explained that he felt like I was talking about him as a child! More reason to hope!

The time came for Suzanne and Kerry to each speak at the podium... and I just soaked it all in. What struck me the most was that as each one spoke, they were simply praising the other. This is what I learned that evening: they say that behind every great man is a great woman; well, behind every successful adult with autism is an unrelenting, driven and unwavering mom (and dads, of course). As star struck I was about meeting Kerry, I just can't find the words to describe the inspiration and fire to persevere and fight for my son that was passed on to me upon meeting Suzanne. Expecting pomp and circumstance I found two loving, humble, giving people who'd traveled all this way in the aftermath of Superstorm Sandy and a Nor'easter (they are from New Jersey)... After the ceremony Suzanne asked if I could stay a little longer and join them for dinner... Umm... YEAH!!!

The surreal whirlwind of thoughts was dizzying as I was trying to wrap my head around what was happening. People kept stopping with outpouring of accolades for Kerry. I was sitting with the president of the school committee, transportation expert and hero mom of this successful, educated young man who rubs elbows with elected officials and celebrities... Yet they were so down to earth that they decided to just order an appetizer because the menu "just had strange pizza, not normal pizza!" One mom stopped to gush over Kerry and Suzanne just said, "he needs to get back home to finish his homework!" (Kerry is finishing his thesis and preparing to graduate with a Master's in Strategic Communications and Leadership from Seton Hall University). We shared our experiences together: missing major family events because our sons can't handle them, not being able to get a babysitter, not being able to go out alone with our husbands, our struggles to get our kids to try new things, our struggles to get our kids to take a bath... the similarities were uncanny. Yet at the end of the meal, Suzanne turns to ME and asks me, "So, what's your plan?"

I am not star struck anymore, not because Suzanne and Kerry are not superstars in my eyes, but because I feel blessed instead. I am unbelievably blessed to have had the opportunity to make two new and amazing friends! An evening that I thought would bring me a tip or two of advice resulted in my witnessing a wonderful friend receive such a well-deserved award, eating "strange pizza" (Kerry made me do it!) and finding a new guiding light at the end of this puzzling journey. I can only sum it up in two words:

"THANK YOU!!!!!"
Meeting Kerry
A toast to Kerry's award! YOU ROCK, MY FRIEND!!!

Tuesday, November 13, 2012

From a mom to you...

PLEASE, PLEASE READ THIS AND PASS IT ON!!!! It's from the Autism Speaks blog...
Posted: 24 Oct 2012 09:23 AM PDT
This blog post is by Janet Amorello. Her son Sam has autism and she writes about her experiences on her blog, Blending with Autism.

I sat near a young mother recently. Though I didn’t mean to, I found myself listening to her conversation. Clearly delighted by her child, she extolled his brilliance and charm. At the risk of bragging, she admitted her son was well beyond all his peers. He may even have leapt a tall building in a single bound, though I am not positive she said that. I am certain in the ensuing weeks he’s learned twelve languages. Or more.
I couldn’t help but smile at the little cherub nearby who sat blissfully unaware of his great prowless. That mother’s delight in her child made me smile too. I hope he is every bit as brilliant she thinks. I hope he can perform magical feats. One day he may hold our collective futures in his hands. I'd be foolish to hope otherwise. 
I have a favor to ask of you, mother of the perfect child.
I ask you instill in your child a compassionate heart as well as an open and inquisitive mind. Teach him  to be patient and kind and to fearlessly pursue all that is right. Bless him with acceptance of all people regardless of origin and ability. Show him how to appreciate their achievements no matter how small. Help him develop an eye for beauty in even the smallest of things. Stress the importance of giving back as much as he takes. Share with him the value of a smile.
Teach him to treasure each living creature and to value every life. Let him know it is ok to make a mistake and honorable to admit and learn from it. Help him to understand he won’t become more by making another less. Teach him to resist judging what he doesn’t understand and perhaps even what he does. Let him know he is no better – or worse – than anyone else.
Teach him to use his gifts wisely. Whether his accomplishments are grand or small, provide him with the tools to leave our world a better place. A place where your son and my son might one day peacefully co-exist. Maybe even be friends. You can show him the way, mother of the perfect child. I know you can.  
Thank you from the bottom of my heart,
Sam's mom

Wednesday, October 3, 2012

About the new diagnostic criteria... from NIH

New Autism Criteria Will Have Minor Impact: Study

Most children should still be eligible for care, researchers say
By Robert Preidt
Tuesday, October 2, 2012
HealthDay news image
Related MedlinePlus Page
TUESDAY, Oct. 2 (HealthDay News) -- Parents should not worry that proposed changes to the criteria for diagnosing autism might leave their child ineligible for care, a new study indicates.
Researchers assessed the impact of the proposed changes, which were developed by an expert panel appointed by the American Psychiatric Association and are expected to take effect in May 2013.
Previous research had suggested that 45 percent or more of children who currently qualify for a diagnosis of autism would not under the new criteria. Those findings caused widespread concern among parents who depend on state-financed health services for their children, The New York Times reported.
However, this latest study concluded that only 10 percent of these children would be excluded under the new criteria.
"I know that parents worry, but I don't believe there is any substantial reason to fear that children who need to be diagnosed with autism spectrum disorders, and provided with vital services, will not be included in the new criteria in this updated manual," said study senior investigator Dr. Catherine Lord, director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital's Westchester campus, along with its affiliated medical schools Weill Cornell Medical College and Columbia University College of Physicians and Surgeons.
The study is the largest to date to try to determine the effects of the new diagnostic criteria for autism. It was published in the Oct. 1 issue of theAmerican Journal of Psychiatry.
Lord and her colleagues looked at 4,453 children currently diagnosed with autism and found that 91 percent of them would still qualify for the diagnosis under the proposed new criteria. Many of the remaining 9 percent would likely qualify with additional input from their doctors, the study added.
The proposed changes are designed to better identify autism and to distinguish it from other conditions, the researchers said.
The overall issue with the current criteria is "not that a lot of people are diagnosed with autism who shouldn't be, but that there is a lot of confusion because the criteria were not very accurate," Lord, who was a member of the panel that proposed the new criteria, said in a hospital news release.
She explained that in developing the new criteria, the panel "deliberately added and organized things to try to bring in and better address the needs of people with autism spectrum disorders (ASD) of all developmental levels and ages -- including girls, who were not represented as well as they should be in" the current criteria.
The goal of the new criteria "is to better describe who has ASD in a way that matches up with what we know from research, which predicts who has the disorder and also reflects what clinicians are actually looking at," Lord said.
Autism spectrum disorders cover a range of complex neurodevelopmental conditions that are characterized by social impairment, communication difficulties and restricted, repetitive, and stereotypical behavior patterns, according to the U.S. National Institutes of Health.
An estimated one in 88 American children has an autism spectrum disorder, according to statistics from the U.S. Centers for Disease Control and Prevention.
SOURCE: New York-Presbyterian Hospital/Weill Cornell Medical Center/Weill Cornell Medical College, news release, Oct. 1, 2012
More Health News on:
Recent Health News

A prescription for peace...

I received this devotional yesterday and I thought it was just too perfect NOT to post. I hope you will find it helpful in your journey!

Tracie Miles
October 2, 2012
By Tracie Miles

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus." Philippians 4:6-7 (NLT)

Despite attempts for more than a year to figure out what was wrong with me, doctors could not identify a serious medical condition. It's not that I wanted something to be wrong. I certainly didn't need anything else to stress about. I was desperately seeking a prescription for peace.

Looking back I can see the main culprit for my stress was my job. Overwhelming expectations and the impossible perfectionism my supervisor demanded took their toll on me physically, emotionally and spiritually. His harsh criticisms and comments made me feel inadequate, and my self-esteem plunged to an all-time low. Chaos swirled around me, stress raged within me, and my health continued to decline. But I didn't recognize the cause.
When a medical diagnosis continued to elude doctors, I believed the lie that excessive stress was normal and I needed to learn how to live with it.

Eventually my stress reached a dangerously high level, and I began to wonder if this was the way God intended life to be. I wasn't even sure if the Bible talked about stress, but I was desperate, so I searched God's Word for answers. Something had to end, and I didn't want it to be my life. I came across Philippians 4:6-7. "Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God's peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus." (NLT)

Although I had read these verses before, it was as if a light bulb came on. I was tired of worrying. I was yearning for my heart and mind to be protected and healed. I was longing to control my stress, instead of it controlling me. And I was desperate for peace.
As the words of these verses washed through my soul, I realized I'd been depending on people to diagnose my problems instead of seeking a remedy from God. Going from doctor to doctor, I had overlooked the only One who had a prescription that could heal — Jesus Christ.

As I prayed for the ability to stop worrying and spent more time processing my stress with God, I thanked Him for His provision of my job. And I asked if it was time for me to leave. I needed to be rescued and admitted He was the only One with the power to do so. I committed to trusting His ways, even if I didn't understand them. Peace didn't come overnight, but it did come. Not because my circumstances changed, but because I tapped into His peace each day in the midst of less-than-peaceful circumstances. Gradually I felt God mend my heart and replace my stress with His truth and love. And when He made it clear after a few months that I was to resign, I was equipped to handle the new stressors that came with that decision.

If you need a prescription for peace, I encourage you to let your thoughts dwell on God's promises and rest in His presence as you pray. Ask Him to help you release your worry. Praise Him for the good things He's done, and talk to Him about the problems you're struggling with. Seek God's will for every area of your life and commit to trust Him enough to make changes as He nudges you. True peace comes when we trust God and seek rest in Him, not when life is conflict-free. A daily dose of God's presence and promises is the best prescription for peace.

Dear Lord, I am stressed. I know I need a change in my life, and I am ready for the prescription for peace that only You can offer. Fill me today with a dose of serenity that I cannot find anywhere else but in You. In Jesus' Name, Amen.
Related Resources:
Do You Know Him?
Today's devotion is based on Stressed-Less Living: Finding God's Peace in Your Chaotic World by Tracie Miles which releases today! If you purchase the book before October 7th you'll receive 7 GREAT FREE GIFTS to further help with managing stress! Click here for more info.
Visit Tracie's blog to sign up for her free "10 Day Stress Detox" and enter to win a copy of her new book, Stressed-Less Living!
Would you like to bring the message of this devotion to the women of your church? Click here to find out how to bring Tracie's Stressed-Lessed Living to your next event.
Reflect and Respond:
How can you trust God in your circumstances and receive His prescription for peace instead of handling problems in your own strength?
Ask God if you need to make changes in your life. If so, pray about the next steps.
Power Verses:
Psalm 107:19, "'Lord, help!' they cried in their trouble, and he saved them from their distress." (NLT)
John 14:27, "I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don't be troubled or afraid." (NLT)

Monday, September 17, 2012

Always pray (and don't give up)

From Proverbs 31 Ministries:

Rachel Olsen
September 17, 2012
By Rachel Olsen

"Then Jesus told his disciples a parable to show them that they should always pray and not give up." Luke 18:1 (NIV)

bam, bam ... bam, bam, bam, bam, bam ... bam ... bam, bam

The noise slowly fills my consciousness.
What is that?
I rub my eyes and look at the clock: 5:51 AM.
Sounds like ... hammering. Who is hammering something at 6 o'clock in the morning? Outside? On a Saturday?

I get up and peer through the blinds, straining on my tiptoes to see through the branches to my neighbor's backyard. And I wonder, should I see someone hammering will I walk out there - pink jammies, tousled hair and all - and say something about poor timing?
I'm really not very confrontational that way. But nor am I a morning person.

bam, bam, bam, bam ... bam ... bam, bam

I wake my husband Rick with my movement at the window, the rising sunlight breeching the bedroom.
"Do you hear that noise? What is that, Rick? It sounds like hammering—at 6 o'clock in the morning!"
Rick listens then announces confidently, "It's a woodpecker."
Anticipating my response he adds, "You can't stop him."
I can't stop him? That sounds like a challenge. As Rick drifts back into dreams, I head to the backyard to find this bird. I spot it hanging off the side of my house, pelting holes into the wood trim by my bedroom window.
I try scaring it away. I scream at it. I throw sticks toward it. Don't worry, animal lovers, I throw like a girl.

It turns out Rick was right, I couldn't stop the bird.
The woodpecker returned over several days. At first, I continued my antics. Parading onto the back patio in the dawn to scream and throw things at a bird. The woodpecker remained undeterred. Occasionally he'd fly off to a neighboring tree only to fly back and peck the side of my house again once I returned to my pillow.

So finally, I granted him the right to peck in peace. It's not what I wanted to do, but he wore down my resistance. He was unstoppable.

Interestingly enough, Jesus told a story of a woman who had woodpecker-like faith. Woodpecker-like persistence. You just couldn't stop her.
With the parable in Luke 18:1-8 Jesus teaches His disciples to always pray and never give up:
He said: "In a certain town there was a judge who neither feared God nor cared what people thought. And there was a widow in that town who kept coming to him with the plea, 'Grant me justice against my adversary.'
"For some time he refused. But finally he said to himself, 'Even though I don't fear God or care what people think, yet because this widow keeps bothering me, I will see that she gets justice, so that she won't eventually come and attack me!'
"And the Lord said, 'Listen to what the unjust judge says. And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? I tell you, he will see that they get justice, and quickly. However, when the Son of Man comes, will he find faith on the earth?'" (vs. 2-8 NIV)
The woman came to this judge so often and so boldly that he thought she would slap wear him out!

Is that us? Do we constantly seek God, asking Him repeatedly in faith for what we need?
Jesus didn't speak of this judge to portray God as unwilling or easily exhausted—the judge doesn't represent God in this story. Jesus was saying that if an unjust judge would eventually grant the request of this woman, how much more will our gracious Father grant His children's requests!

God is willing to answer—to help, to restore, to vindicate and redeem. But we must have faith. And we must ask Him. Sometimes—oftentimes—repeatedly.
You and I need the kind of faith that will not give up. The kind of faith you just cannot stop. The kind of faith that prays always.
We need woodpecker faith.
Dear Lord, hear my prayers today about _________ and thank You in advance for Your answers. In Jesus' Name, Amen.

Related Resources:
Visit Rachel's blog for more help in praying and not giving up.
Reflect and Respond:
What prayer would you like answered? What injustice do you need righted?
Persist in prayer for this today, tomorrow, this week ... as long as it takes.
Power Verses:
Mark 9:22b-23, "'But if you can do anything, take pity on us and help us.' 'If you can?' said Jesus. 'Everything is possible for one who believes.'" (NIV)

Tuesday, September 11, 2012

It's September 11

I wanted to post something patriotic and found this on the Autism Speaks Blog. I have posted it exactly as it was posted, with no editorial changes. I hope you find it a blessing to your life and momentum for this journey.


Posted: 10 Sep 2012 12:57 PM PDT
This post is by Alexis Wineman, Miss Montana
Every person on the face of the Earth has to work to get where they want to go in life. The same goes for people with autism; the only difference is that autistics have to work harder, a lot harder. Hello, my name is Alexis Wineman and this is just my story. When I was born I was just your typical baby but around the age of 2, I started signs of my disorder. However I wasn’t officially diagnosed until I was 11. After all that time, my parents were relieved to finally have an answer. As for me, I couldn’t have cared less. I hardly had any friends, I was teased and picked on almost every day, and I was way behind in all of my classes. Autistic? Great, another name for people to call me other than retarded. Whatever this autism thing was, it ruined my life before I had a chance to live it. But to my surprise things started to get better in high school. People started to back off and through programs like speech & drama and cross country I was able to make some great friends. Graduation became possible and I finished high school with high grades. When I told my parents that I wanted to compete in the Miss Montana program it was a complete shock to them. I grew up hating anything that resembled a pageant. I remember how I would watch the Miss America program when I was younger and seeing those beautiful, intelligent women who, no matter the outcome, had a great future ahead of them. I thought that I could never have a future worth looking forward to and I thought that the confidence and grace these women had was too out of my reach. Looking back, I realize how foolish I was. I have already done so many things I never thought I could do. I’ve run three miles without stopping, spoken in front of many people, qualified for the National Honor Society, and was able to graduate high school with an acceptance to college. So I thought I would try Miss Montana and see if it was something that I might enjoy. It’s a good thing I did because I was crowned a week later! Though it has only been two months since my crowning night I have been constantly on the go. I have met so many amazing people through my appearances. This has been nothing but a wonderful experience and I am looking forward to the rest of the year, including representing Montana at the Miss America program in Las Vegas in January!

In the Miss America program it is required the each contestant have a personal platform or issue that they plan to bring attention to. I decided that mine should be autism awareness and acceptance and I titled it “Normal is just a Dryer Setting-Living with Autism.” I have already had the privilege of speaking at a couple conferences and I was able to share my story with those who were willing to listen. I was so excited when I heard that Montana was going to finally have a Autism Walk. Montana doesn't have many programs or resources to help children with autism but this walk should bring more attention to this cause. I am so excited to be involved with the walk and just as honored to speak at it.

I hope to be a positive face for those who feel lost and hopeless, whether they are autistic or not. I want to show people that being on the spectrum is not a death sentence but a life adventure. 

Saturday, August 18, 2012

Star Struck!

Hi everyone! I know I haven't written in a very, very long time. It has been an extremely rough summer. Thankfully after a really hard month of July, August seems to be going a bit smoother. I've been home with Nathan 100% of the time now that we are both done with our summer school programs. Since I've been home I've been able to catch up on so much of the reading I'd left behind in my email inbox. I'm subscribed to the Autism Speaks YouTube channel and one of my favorite series is Kerry's Korner. I posted one of Kerry's videos this past July (in response to the whole 50 Cent debacle). Well, I decided to go back and see some more of Kerry's Korner and stumbled upon a video of him reading a poem he wrote about his experience as a person with autism. I was SO touched when he spoke of his parents and hearing his words was like he was saying what Nathan has been trying to tell us for years. I almost felt transported into the future imagining Nathan saying these words about us, his parents. I HAD to find a way to contact Kerry!!! So I spent almost a whole day trying to find him... and I did, so I emailed him. And, guess what? HE WROTE BACK!!!

I just wanted to ask a simple question: based on his experience, what can he recommend as the best and worst things I could do for Nathan? Kerry sent me some links to various places online where I could learn more. Here is a list of resources he shared/recommended:

Here is part of Kerry's story, including some words by his mom from the Autism Speaks Blog:

20 Years of Autism: A Mother and Son Perspective

March 5, 2012s
This blog post is by Kerry Magro. recently started a new video blog called “My Autism My Voice,” where he discusses a variety of topics. If you would like to contact him directly about questions/comments related to this post he can be reached at kerry.magro@autismspeaks.org or through his Facebook page here.
On January 15th of this year I turned 24. To be honest this milestone really didn’t mean much to me besides knowing that in a year I could rent a car for the very first time. 2 weeks later I received an email from a parent in regards to helping her grandson who has PDD-NOS. Maybe more than any of the other emails I had received before, this question was very detailed asking for several questions regarding topics such as an early diagnosis, therapies, early childhood, how to approach the diagnosis, etc. Even though I’ve helped answer questions before I asked my mom to help assist me in answering her questions.
What I would receive back from my mom was something I didn’t even realize and that was it had been 20 years since I was first diagnosed at 4. 20 years of autism. It made me realize how much time had actually flew by and of how I got to where I am today. I thought about the milestones I’ve  hit: playing for my high school basketball team, being student council president, having a girlfriend, graduating college, becoming a motivational speaker, writing a book, and maybe most importantly…having a voice to be heard. Time slowed down for a bit.
My Mom Wrote to The Woman:
“Looking at Kerry today I wish 20 years ago someone had offered me inspiration and hope that he represents and I can see why anyone would ask the question of how he got to where he is today. His PDD-NOS was severe. Although we did not know what PDD NOS was they mentioned that some children were institutionalized and that’s all I heard.
Kerry was our delightful only child reaching most development (height, weight) milestones except speech until he was 2.5 years old. At 2.5 he started to show extreme signs of sensory integration dysfunction where he was afraid of a wide variety of sensory issues. Wind, rain, water, noises loud and soft were major issues. There was a time when we could not bathe him – uneven surfaces such as sand and or swings where he couldn’t feel the bottom below him were a problem. He was asked to leave two different pre schools because they couldn’t handle him the later he preferred isolation would not play or participate with other children and had delayed speech, limited pretend play, echophilia, twirling, extreme difficulty with transitions and tantrums. He had fine and gross motor delays. When I dropped him in the morning he would scream he didn’t want to go in and when I picked him up in the afternoon I would have to drag him screaming because he didn’t want to leave. Once home with a caregiver he would scream at the top of the stairs “Go away”.
Kerry was diagnosed first by Hackensack Hospital and then by Doctor Margaret Hertzig, The Director of Pediatric Psychiatry at Cornell. Doctor Hertzig is a world-renowned expert in Autistic and Autism Spectrum Disorders. She saw him as he grew marking improvement she saw. Interestingly to us she reconfirmed Kerry’s diagnosis last year for his accommodations for GRE’s as he started graduate school.
The Kerry you see today is not the Kerry I grew up with.
As to care Kerry did not come together for many years when he was diagnosed. Finally we tried to get him into a pre school handicapped class. There was a delay in that so we began Occupational therapy (OT) at home with a Pediatric OT working on the SID issues as well as speech. OT continued at home till he was 7 as well as in school where he was in a multi-handicapped class receiving speech, and OT. At 7 he began intensive physical, OT therapy at Hackensack Hospital where he did a lot of vestibular planning issues. He is seen privately to this day for OT/PT as needed by a local PT.
One of the major things that worked for us was sports. Although he did not want to be around people I got him involved in pee-wee bowling and then sent him to a JCC summer camp for children with neurological issues. The camp was wonderful in that they did a different activity every 40 minutes and the forced transitions helped condition him a lot. The vestibular planning therapy also help a lot.
Kerry started to respond to recognition, praise, rewards and I ran with that, we have a million great job stickers; magnets, trophies and I developed my own token economy barter system with him. If he would try something three times he would get a predetermined prize (seeing a movie, an action figure, a game) that we agreed on. If after the third time he did not want to do something I would agree to let him drop it. Since he wanted to do nothing three times sometimes seemed interminable for both of us but I kept to it and found a kid who loves bowling, played soccer, basketball etc. T- ball was rougher with the co-ordination issues and was one that got dropped but not till the third season.
All this time, speech, physical and occupational therapies continued, we also took lessons piano at the house to help him out.”
To have this written out for me to read left me with so many emotions. Some of the stuff was so long ago I had no recollection of it whatsoever. What stayed with me though was the passion and the love that came with this letter. No matter how many struggles were presented, my parents were always willing to go the extra step to help me and today I want to live by that example to help others.
My parents are strong. They are saints. Without them I have no idea where I am 5 years down the line let alone 20. I know I still have a long way to go but one thing I know is for the next 20 years that I have autism I’m not going to be sitting down. I’m going to fight, I’m going to serve, I’m going to commit, I’m going to conquer and I’m going to communicate for the better day for us now and for the future. Please join me by having your perspectives of autism, both for you and your family heard in the comments section below. Thank you.
To see the actual blog post, please visit: http://blog.autismspeaks.org/2012/03/05/kerry-mother-son/

After hearing his mother's description, it is hard to believe, but here is Kerry today:

The more I read and learn about Kerry, the more star-struck I've become to know that I am now "pen pals" with one of the most amazing autism successes I've witnessed in my life. In my search I have learned that he not only has an undergraduate degree, but he is soon to finish his master's degree as well. He is employed by Autism Speaks and hopes to one day become a motivational speaker. He also worked as a screen-write for the movie Joyful Noise!!! Did I say I was star struck???

So, Kerry has now ignited a deeper passion in me: to continue to push for Nathan to be seen for his strengths, not his weaknesses. To continue to support each and every individual with autism with Kerry's success as my driving force. Reading his story, it is almost impossible for me to believe where he is and what he's accomplished. I hope you, too, will find Kerry's story an inspiration in your life!


Please help Kerry reach 10,000 "likes" on Facebook: https://www.facebook.com/kerrymagro88

Kerry Magro is an adult with autism. He is currently part of the Autism Speaks family and shares his experiences with the world through the Autism Speaks blog, Kerry's Korner, his own website, http://kerrymagro.com/ and his blog www.myautismvoice.com.

Tuesday, August 14, 2012

A Touching Note

Hi everyone-

A friend shared this on Facebook and I wanted to share it with you. It's in spanish, so I will post the original first, then the english translation will follow. Thank you to Katya Perez Lopez and Surjeily Lebron for sharing their pain. We are all on this journey together and we all understand... but don't tell us you "understand" if you're not walking this walk, because there is NO way you can!

El Autismo Duele

by Surjeily Lebron on Saturday, June 30, 2012 at 9:38am ·
"Dale Gracias a Dios que tu nene tiene Autismo al menos el Autismo no duele"

Muy temprano para escuchar estupideses de la gente.
Quien te dijo q el autismo no duele??????
 Claro que duele, duele cuando estas una hora tratando de decifrar que le pasa y te das cuenta q solo tiene sed.
Duele cuando tiene fiebre y dolor en alguna parte que no sabe decirte donde es.
Duele cuando viene Santa Clouse y los Reyes y ves a todos jugando con sus juguetes y a el con las cajas (teniendo 9 años)
Duele cuando el se siente mal y  los doctores me dicen no pasa nada esta bien, luego de dias y horas vota una piedra cuando hace pipi.
Duele cuando esta triste y no hay manera q sepas porque.
 Duele cuando llega furioso de la escuela y tu no sabes q paso.
 Duele cuando juega en el parque y ves a los papas alejando a sus niños de el.  
Duele cuando estas en walmart y un imbecil le dice a su hija ven despegate de ese nene
Duele cuando ningun doctor sabe que tiene hasta que lo ven vomitando sangre
Duelen las miradas raras
Duelen las rabietas que hace tipo "terribles 2" teniendo  casi 10 años
Duele el rechazo de su propia "familia"
Duele que en su cumpleaño los unicos invitados son sus primitos y su hermano
Duele que tenga hambre y tu no entiendas que le pasa
Duele no saber si el sabe que lo amas.
Duele escuchar a otros niños hablar y saber que tu hijo quizas nunca hable.
Duele saber que quiza nunca te diga mamá te amo, duele.
A mi nadie venga a decirme que el autismo no duele porque si, si duele y el dolor hay dias que es muy muy muy fuerte casi inaguantable y hay dias que duele menos pero siempre duele y no existe una pastillita que quite este dolor.
Con este dolor caminamos todos los dias, con este dolor sonreimos, con este dolor seguimos nuestro camino no paramos, porque detenernos significa regresion en mi hijo y las regresiones ufffff eso si que duele y ese dolor es uno de los mas fuertes.

Autism Hurts
A note written on Facebook by Surjeily Lebron on Saturday, June 30, 2012
"Be thankful to God that your little boy has autism, at least autism doesn't hurt"

It is way too early to listen to stupid comments from people.
Who told you that autism doesn't hurt???????
Of course it hurts! It hurts when it takes you an hour to try to decipher what's wrong with your child only to find out he was just thirsty.
It hurts when he has a fever and pain somewhere in his body but he can't tell you where.
It hurts when Santa Claus and the Three Kings bring presents and you see all the other children playing with their toys while yours just wants to play with the boxes (being 9 years old)
It hurts when your son feels sick and the doctors tell you, "nothing is wrong, he's fine," yet after days and hours he passes a kidney stone while urinating.
It hurts when he is sad and there is no way of you knowing why.
It hurts when he comes home from school just furious and you have no idea what happened.
It hurts when he plays in the park and you see the other parents moving their children away from him.
It hurts when you're at Wal-mart and some imbecile tells his little girl "come, move away from that boy!"
It hurts when no doctor can figure out what's wrong until they see him vomiting blood.
It hurts when you get those strange looks.
It hurts when you have to deal with tantrums typical of "the terrible 2s" only your son is almost 10
It hurts when you are rejected by your own "family"
It hurts that at his birthday party the only kids there are his cousins and his brother.
It hurts when he is hungry but you can't tell what's wrong
It hurts not knowing if he knows how much you love him.
It hurts to hear other children speak knowing your child will never speak.
It hurts to know he will never say, "Mommy, I love you," it hurts!
Don't anyone try to tell me that autism doesn't hurt because yes, yes it does hurt. There are days that it is very very very hard, almost intolerable and there are days when it hurts less, but it always hurts and there is no pill that can take away this hurt.
Yet with this pain and hurt we walk every day, with this pain and hurt we smile, with this pain and hurt we keep moving on this journey and don't stop, because stopping means a regression in my son and the regressions, oooof! That is what really hurts and it's one of the worst of pains.