Autism Awareness Month: CBB Writer Missy shares her son Owen's story

04/23/2008 at 03:50 PM ET

Autism_logo "I’m positive." 

Those two words and the moment in which they were said are forever seared into my brain.  September 2007, the Developmental Pediatrics wing of St. Christopher’s Hospital for Children in Philadelphia, Pa., the office of Dr. Beth Parrish.  She must have seen the look of panic on our faces, as my husband and I wildly darted our eyes around the room, desperately looking for someone to disagree with her diagnosis.  But the medical students who assisted in the 4-hour evaluation of our then 3-year-old son Owen failed to utter a single word, and their gazes quickly averted our own.  Instead, it was just a sickening silence, then Dr. Parrish with a gentle hand on my shoulder, then the tears began to spill silently down my cheeks, and then those words once again, the words that I could no longer ignore or pretend not to hear.

"I’m positive."

She was.  And in retrospect I was, too.  I’d just pretended that the things I’d seen in Owen were a phase, and then when they persisted, I’d pretended that he was quirky, and then when other toddlers began to outgrow their quirks I could no longer pretend, and we got our referral.  Still, every ounce of me clung to the hope that I was somehow wrong with my suspicions.  But inside I knew, and had known for quite some time, that Owen has autism.

Click ‘continue reading’ for the rest of Owen’s story.

Dscn08971Owen, who is now 4, was born at 41-weeks via c-section after a failed induction.  He was an extremely fussy newborn, screaming nonstop if he wasn’t sleeping or eating.  Beyond the colic, his first year was notable only in that he was besieged with ear infections and ultimately had tubes placed in his ears at 9-months of age.  The surgery did nothing to stem the tide of infections, however — they continued to occur at the same rate and with the same severity as they did prior to the procedure.  By the time Owen was 3, he’d been treated with antibiotics 19 times for ear infections, 4 times for upper respiratory infections and once for Lyme Disease. 

But despite being eternally sick, Owen grew to be a relatively happy, ‘normal’ toddler.  Shortly after his 2nd birthday my husband and I decided to try for another baby and one month later, I was pregnant with Samuel.  We couldn’t believe our good luck!  But, as it does for most people, good luck eventually runs out — and ours was about to with Owen.

As I entered my second trimester, Owen slowly began retreating into a world of his own.  We noticed him spinning when he was excited — if he was sad or, as happened less and less frequently, happy.  He became angry, withdrawn, unwilling to interact with us and fiercely resolute about refusing eye contact.  Within months, his outbursts had become so legendary at our local grocery store that we were even asked during one shopping trip to leave.  Ever since he had been a baby, Owen and I would go for walks each day.  Slow walks, where we would stop to talk to the neighbor, or to examine a tree, or to admire a passing airplane.  Now these walks that he so cherished just months before had become a source of monumental pain and agitation for Owen.  The sunlight was too bright, the wind too harsh, the pace too slow, or sometimes too fast.  Before we’d make it to the end of the block, he would scream and scream at me to take him home and then — once there — he would demand that I draw the curtains closed, turn on his favorite cartoon and leave the room.  If I dared to come back, even for just a second, I was met with flailing fists, kicking feet and shrieks of OUT!  OUT!  My sweet little boy had been replaced with a belligerent, verbally and at times physically abusive tyrant.

2007_10142005_0104_071155_2We began making lists, keeping a log of these new troublesome behaviors, and when our lists became so voluminous that they could no longer be rationally passed off as the ‘terrible 2’s’ we called our pediatrician.  From there, things moved relatively quickly.  We were referred to a neurologist who diagnosed Owen with Aspergers Syndrome and Oppositional Defiant Disorder (ODD), but still we privately insisted to family and friends (and ourselves, even) that a mistake had been made.  Dr. Parrish’s second opinion confirmed ODD, and she switched the Aspergers diagnosis to high functioning autism.

I suppose that in that moment, when Dr. Parrish looked me in the eye and told me she was positive about Owen’s autism, I thought that there would be some measure of relief.  That we could use the moment as a launching pad to begin the long, arduous process of ‘fixing’ what seemed so clearly broken with our son.  But I knew better.  I knew enough to know that there was, and is, no ‘fixing’ Owen.  Instead, we can only hope that with what seems like never-ending services and a team of therapists, he’ll go on to have more good days than bad.  And right now we’re batting .500, which is about as good as it gets around here.

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My husband and I continue to struggle with the magnitude of what’s happened to our son and to our family, however.  The organization Autism Speaks says that receiving the diagnosis is like a death.  So many things that we envisioned for Owen now seem unlikely, so much of what we thought was a given in his life is now at the very least uncertain, that the dream for us of what Owen will grow up to be really does feel dead.  And we mourn that loss daily.  Sometimes hourly.

While the denial is gone we’re stuck somewhere between anger and acceptance.  There are days where I can adjust my world view for Owen and try to carve out some new hopeful, if scaled back, path for him — and us — in life.  And then there are days, I’m ashamed to admit, where I am completely consumed with anger.  I get so jealous of my friends and relatives with their normal kids and their normal lives… Lives that aren’t dominated by therapy appointments and evaluations and pushing for services and an exhausting effort to forever anticipate the rage of someone who will not hesitate to bite you until you bleed if you do something as harmless as fill the wrong sippy cup. I get so jealous that sometimes I think the jealousy might eat me alive. 

I also worry endlessly about Sammy.  I worry that he’ll develop the disorder himself someday soon, and his goofy, toothy grin will slowly fade away.  I live in perpetual fear that the infectious giggle I hear coming from his room each morning when he wakes up will someday not be heard.  I also worry that even if he doesn’t have autism, his own definition of ‘normal’ will be forever skewed by what he’s witnessed in this house.  If we had known then what we know now, if I had known that within weeks of Sammy’s conception his older brother would begin to spiral downward, I have serious doubts that we would have tried for him at all.  I remember asking Dr. Parrish about whether Sammy was at an increased risk of being diagnosed with the disorder; She told us that yes, he’s ten times more likely to develop autism, but that the data on siblings with autism is scarce because "most couples opt not to have any more children."  Ouch.

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All that said, we know we’re lucky.  I can’t help but notice the other children in the waiting room at occupational therapy. I know that things could be much, much worse. Despite his predisposition to angry, violent outbursts Owen is actually quite sweet at his core. He adores his baby brother and will scour the house for hours on end to look for a lost binky if Sammy is upset. His sun rises and sets with his Daddy.  When Owen hears the key turning in the lock as my husband returns from work he’ll drop whatever he’s doing, tear across the house, fling himself into Daddy’s outstretched arms and squeal "I missed you!"  And Owen tells me he loves me every single day, many times over.  I am acutely aware of how many parents of autistic children will never hear those words, or any words, from their child … never get a real hug, even … and so how
can I not feel grateful to have had our beautiful boy?

There is a growing army of children who are affected by autism.  The odds are good that you may even know one yourself, and if you don’t, you probably will soon because it is an epidemic that shows no signs of slowing.  While my heart breaks for families like ours, I believe wholeheartedly that some good will come from Owen’s diagnosis, from all of these diagnoses — for the more who are diagnosed, the harder it will be for society at large to ignore this problem, and these children, any longer. 

It has been my great pleasure to provide you with some general information on autism these last few weeks as we at CBB help to mark Autism Awareness Month (read about autism signs and symptoms here, and causes and treatments here).  I hope that you will visit the Autism Society of America to learn more about the disorder and to get tips on how you can support a friend or family member who might be new to the diagnosis, and still mourning the death of their dream.  While there you can also make a donation that will help fund autism education, research and advocacy.

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Photos: Owen and Daddy, Sammy and Owen taking a bath, Owen and Sammy at play, Owen and baby Sammy, Owen (March 2008)

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Principesa on

Thank you Missy for sharing your candid story.

carpot on

Missy, my heart breaks with the challenges that you and your family are going through. But how strong you are to share your story in the hopes that it will make a difference in someone else’s life, and the life of their child!

I wish you all the best – Owen is a beautiful child!

I always like to read your articles on here – I “know” you from the ivillage message board for our luvbugs – and now I feel like I know you a little better, after reading this. Feel free to stop by sometime and say hi to the rest of the gals!

tink1217 on

Thanks for sharing. I also have a son with autism spectrum amongst other things. I can totally relate. Thanks again.

Elizabeth on

Crushing and eye-opening. Thank you for sharing your story.

Mina on

I am actually from the Philadelphia area. I have my BA in Psychology. Since I was 18 yrs old, I have worked with children/adults with autism and other types of behavioral disorders.

Right now I work at a wonderful place called Woods Services, in Langhorne. I have worked in this field for 6 years now, and I cannot begin to tell you how wonderful Woods Services is.

I commend ALL parents/relatives/friends/siblings of someone with autism or any type of disability. It is a hard and often frustrating lifestyle. But we all know the little rewards (a simple hug, eye contact for 5 seconds, smile, sign for thank you) makes it worth it all at the end of the day.

jaQ on

oh, missy. i see your posts, and i never knew. my heart goes out to you, mama, it goes out to you, and it breaks.
owen (and sammy too!) is a gorgeous, beautiful little boy.
i am one of the few who do not personally know any families living with autism, though a close online friend, whose son is just weeks younger than my daughter, is having her boy tested, as he has many symptoms. it doesn’t sound good, and it just breaks my heart.
it’s the age old question of why things happen to good people…
i too believe that something HAS to be done. more, and more, and more, diagnoses~ we can’t ignore it!
hugs for you, for owen, for every mama, child, and their family, who are doing their best every day, to live with autism.

jaQ on

ummm… i said my friend is having her son tested… i must admit that i don’t have much knowledge about autism, and if there is no “testing” done, i apologise~
i don’t want to offend anyone!

Andrea on

I cried reading your story- so honest, so heartfelt.

I went to school with a girl who had severe autism, she was in all the mainstream classes, however spent most of the time on her own. I always worried about what her future would hold.

Now 8 years since leaving school I see her at the train station in town quite often. She is wearing work attire, and seems to have so much more confidence that she did when I knew her.

It is such a tragic diagnosis, but at least now you know how to help your little boy.

I wish you all the very best- Autism Charities are at the top of my support list.

Christina on

Thank you so much for sharing! My son who will be 8 in two weeks is also High Functioning Autistic/Aspergers. The spectrum is so wide that most people who meet my son never know unless we have a “meltdown”. Most people who see us comment on how we should “discipline” him. I just smile and let them know what a blessing my son is and tell them why we do what we do. We need to educate! My son is not on the “aggressive” side he is very emotional! Can cry at the drop of the hat. I like you wish he could just do “normal” things. He is a perfectionist ~ if it’s not right the first time good luck trying it again. After lots of therapy, working with him 24/7 he is doing great. We still have our moments, but stay strong and grounded. Consistency is the key!!! We are in 2nd grade mainstream class. The school is public and is a blessing. They work with us and meet his needs. We are in this together!! Best of all ~ we are making straight A’s and also have a friend now. That is a big deal!!! He may only have one friend, but my sweet boy has a friend and is playing.

Heather on

Thank you for opening your heart and sharing your story with all of us. As a speech therapist, I worked with several autistic children and know how frustrating it can be at times, but then there are times when you have a breakthrough big or little that makes everything worth it. You are one strong mom and I admire you. I wish your family all the best!

Shell on

You never cease to amaze me with your strength and the grace with which you face challenge. I knew when I met you that you were special, but I didn’t know then, what a wonderful role model and mentor you would become for me. You are amazing. Owen and Sammy are ADORABLE!! Thank you for sharing your story. You are my hero!

Patrick on

Missy, Don’t quit. Your little boy can still be recovered. Pick up the book “Engaging Austism” by Dr. Stanley Greenspan (brother of Alan.) It will give you the guidance you need to turn your son’s life around.

Never give in. Never, never, never, never….

Patrick

Laura on

Best. CBB. Post. Ever.

Thanks for sharing your story. My son was just diagnosed in February, at age 2. It helps to hear about other parents who are going through these challenges, and the mixed emotions.

Southern girl on

wow…your story bring tears to my eyes…my heart goes out to you…thanks so much for sharing! a friend’s son is autistic and as a sub for special services, I sometimes work with autistic children…even though they all have the “same” diagnosis…they are all so different. there is one little girl who is in the first grade (though a little older than the average first grader)and though she doesn’t write well, she reads great and completes work on her own. you never know what God has in store for you or your family, I just say hold each other tight and don’t give up on your dreams…live for each day…and in the meantime, your dreams may come true :-)
*sometimes the dreams that come true are the dreams you never even knew you had*
God Bless!

Christine on

Wow…Owen sounds textbook for biomed after all of his antibiotics and illnesses as an infant.

My son was extremely healthy, no ear infections or antibiotics as an infant and has responded fantastically to dietary and some biomed interventions.

We’ve worked hard and committed to his remediation and we now have our family back on track (we also have an older son and younger daughter)
We have alot of hope for our son.

Thank you for sharing a very personal story. And thanks also for the series on Autism! We can use all the awareness we can!

ShopLittleGifts on

Great article. You and your husband are great parents. I can tell from the way you describe your kids – the giggles in the morning, the running towards the door to greet dad at night. I know it’s impossible, but try to not worry so much. Everything will work out. It sounds like you are doing everything you can and it sounds like Owen too is growing up as best as he can. Also, if it’s possible, try to get 1 or 2 hours out every month to go do something fun for yourself, whether it be a massage or lunch with your girlfriends – everyone needs to decompress once in a while.

Jonathan Campenni on

Missy,

I admire your ability to focus your life on such a heartbreaking situation in hopes that your sacrifice will pay off for Owen and for other parents, friends, and family who love someone with Autism.

Althea on

Missy,

I have always enjoyed your CBB posts and admired the way you write. However I had no idea that in your life you would be such a strong person and such a loving mother.

My mother’s godson, who is now in his late twenties, is autistic. His parents love him more than anything. They were blessed with two more children, who are now both in university and completely healthy.

From what I have seen from them, they love their big brother endlessly and they have sincere compassion for anyone going through any similar situation.

Please do not think that your little son will have a skewed definition of what normal is. Think that him being blessed with his older brother, he will get to know firsthand what it is to love somebody no matter how he is, just for who he is and what an emotionally mature and compassionate boy he will grow to be, having such an amazing and nurturing older brother. I have seen this happening before my eyes, in the family mentioned above, and it is something to be admired.

I wish you and your family all the best.

shannon johnson on

Missy-
thank you for sharing your story with such honesty. Owen is very fortunate to have you and your husband on his team….
I am a parent of a son with autism as well. I recently founded an online society community for families with children on the spectrum to help parents to connect, support and encourage each other. Please feel free to join and share at http://www.foggyrock.com

Barbara Ayars on

Dear Heart: I have known you all your life, and even before you were born. Your seeking mind, your incredible intelligence, and your ability to articulate your thoughts and put them on the page, your sense of fun, and your heart for whatever you put your mind to, all add up to one super-special mother for Owen and his future. While I have always enjoyed our exchanges about the world and its many facets, I have always admired the complexities of your many, many skills. Owen and Samuel are part of us. Their value to your family is equivalent to all the children we hold dear. What you can rest in is the certainty that each of us who love you (and that is all of us) support you in your every decision, pray for all your needs, and hold great hope for the future of your special boy, for it is clear to everyone who knows you, to everyone who has read this site and now know your story, that Owen is blessed to have such loving, caring parents. I tell you this in such a public way so that others can know that to us, Owen is a perfect boy with a very difficult diagnosis, but who has every edge in the parents he has, and who is well loved by every member of your family. Consider how much it means that God has entrusted him to you. It is perhaps a measure of how valuable God thinks you really are. He is not wrong. Even when you are exhausted, when you don’t know what to do next, when you are all out of ideas, know He has provided great resources in your family members. Just remember to ask. By the way, your writing prowess does us all proud. (Your Aunt Barbara)

Robin H. Morris on

You have written a story of hope. I recognize that you are traveling a journey we forged many years ago, as our son with autism is now 20. I am awed by your wealth of knowledge and encouraged that you have utilized therapies that were merely ‘ideas’ when we pioneered our child who was alone in this process.
I recently shared our story that was recently published in The Philadelphia Inquirer.

http://www.philly.com/inquirer/opinion/20080424_A_path_into_the_world.html

Always remember to look back and see how very far you have come.
Best wishes and thank you for sharing your personal trials and tribulations that we as parents of autism endure.
Regards,
Robin H. Morris

Sonny on

Dear Missy, Your spouse and you are doing wonderful things for Owen and Sammy. Those of us who do not live with autism cannot imagine the struggles that those who do endure. You have put beautiful words to it that make it very real to us.

I hope and pray that his appointments and therapy continue to bring progress. I also want to say that you shouldn’t give up hopes and dreams for him. I have found that no matter the circumstance, we shouldn’t limit those around us whom we love by merely accepting the expectations of others, or ourselves. Also, don’t let Owen’s condition cause you to second guess your decision to have another. They are both precious gifts to you, your husband, your family and your friends. Each child comes with built in struggles, but many, many more smiles than tears.

Thank you for sharing. Thank you for so eloquently allowing each of us a glimplse into the world of children with autism. Thanks to you and your husband for being role models in your care, attention and love for your children.

Sonny

proudmama on

My son was diagnosed with Autism Spectrum Disorder when he was 2 and a half years old.
I took a week to cry, get p***ed off,cry some more, get more p***ed off and then I decided to deal with it however I could. I grabbed on to any help I could get and took one day at a time.
My son is now 9 and is a happy, social boy, doing incredibly well in mainstream school.I have learned over the years to appreciate each milestone we have achieved and am continually reduced to tears of pride by things he does. He has been learning to play the clarinet and has just started learning guitar. He loves sport, especially football and his current obsession is memorising all the player statistics from every team. His other great passion at the moment is learning to play golf.
Autism and all, I couldn’t imagine my son any other way. When he comes over and hugs me and tells me that he loves me bigger than the whole Solar System, I hold him tight and thank God that he is mine.

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