My Son The Model
By Deb Mylander (Photo by Fritz Liedtke at www.fritzphoto.com)
"You know, he is handsome enough to be a model," the Target clerk said to me in the same tone of voice she would have used if she had been telling me that there was a sale on laundry detergent. He had always been beautiful. He entered this world with giant eyes, gorgeous skin, and hair that any middle-aged man would give his right arm to have. But, I had always hesitated to try and put him in modeling because of his autism. Would my son, Cade, really be able to follow the commands of the photographer? Would it overwhelm him? Would he do or say something inappropriate? For some reason, the Target employee's words that day, gave me the courage to go ahead and try. I also secretly hoped that this could help make him popular, or at least help him get one friend. I envisioned seeing him plastered on the walls of Abercrombie & Fitch. I even toyed with the idea of starting him on an ab workout routine. So, we had his pictures taken and they came back breath-taking. He has a beautiful shell. God seemed to work overtime on perfecting his exterior, yet his interior was somehow flawed, not quite right. I looked at the pictures with a sense of awe and sadness. He was almost 13 and the pictures captured the gorgeous man that he was about to transform into. I thought to myself, "He is too sexy for this autism. He is too gorgeous to not have friends. He is too perfect to be 'different'."
Leading up to the day of the photo shoot we spent a day at the mall. Not only did he need clothes for the photography session, he also needed clothes to start middle school. Middle school was the time in his life that I had looked forward to about as much as I look forward to getting a mammogram or a pap smear; all necessary evils. I brought him to the mall because damned if I wasn't going to make him "look" cool, even if he was never going to "be" cool. So, I hauled my son with autism into Abercrombie and Fitch. The mood inside A&F is much like the mood inside a brothel. It's too dark, too warm, and smells like cheap cologne. There are also pictures of young, half-naked people on the walls. As I thumbed through the $40 t-shirts, Cade decided to sit cross-legged in the middle of the floor because "he felt like it." Never mind that there were hordes of teens trying to maneuver their way through the dimly lit store. Cade didn't care. I was horrified. "Cade, get up. Stop acting so weird. Try to find a shirt that you like." I said in my 'good lord, here we go again' tone of voice. My eyes darted back and forth between the other kids in the store to see their reactions. Did they notice him? Were they laughing? Both were thoughts that regularly came to my mind when we were in public and Cade was doing something inappropriate for his age. But Cade didn't care, he never cares. And I cared way too much.
I had always cared way too much. Growing up with a father in a wheelchair, I was used to seeing people's eyes watching with a fleeting glance of curiosity and then pity. My father and son fell from the same star and the fall damaged both of them in different ways. As a child my father meant everything to me. He was charming, funny, caring and through an adoring daughter's eyes, perfect. However, from an outsider's perspective he looked broken. I remember the internal battle I had between loving him and being ashamed and feeling embarrassed because of his disability. I struggle with this same internal battle with how I feel about Cade's autism. I love my son so much, but I know that he will receive scorn as he gets older and kids get meaner. When I reflect on my teenage years, a cloud of guilt dims my view. That same guilt churns in my gut when dealing with my son.
Somewhere during my youth I made an unconscious decision to never stand out, to always fit in, to not be pitied. I transferred this overwhelming need to fit in and not stand out (at least not in a negative way) to my children. My two daughters are easy. I put them in cute clothes and they do the rest. They know how to make friends. They know when laughing is appropriate and not appropriate. They know that talking non-stop about Spongebob makes people leery of being friends with them. They know what is 'normal' and what is 'strange.'
A few days after Cade's photo shoot, the kids went back to school and Cade started middle school. He was decked out from head-to-toe in designer name clothes. I reminded him that he was 12 and had to act like a 12 year old. His list of "Don't Do, Don't Say, Don't Act" was much bigger than my daughters' lists. I dropped him off, drove away and prayed that he would be normal, at least for today.
At the end of the day I went to Cade's school to pick him up. I waited at the corner of the school where the kids in Cade's special education class come out of the building. I saw all of the "typical" kids coming out of the school first. There were a bunch of boys in football jerseys joking around with doe-eyed girls following them and giggling. I secretly wished that Cade could be in one of those jerseys, surrounded by friends. Next, I saw a group of boys I had known since they were all little and I was in a new mom's group. They were heading to the bus laughing, telling jokes, and planning out the rest of their day. My heart ached again; longing for Cade to be heading to the bus with them; making plans to meet with one other later and do whatever it is that 12 year old boys do. Cade's class came out last. A few of the kids were wearing helmets, one came out of the building talking way too loud and rocking. The aides were pushing a few in wheelchairs. I still didn't see Cade. Then he finally came around the corner, but he wasn't by himself. He came out smiling and pushing a girl in a wheelchair who couldn't walk, couldn't talk, and had to wear a helmet so she wouldn't injure herself. Cade was being very careful to make sure he didn't run into any other children. My eyes immediately filled up with tears. He pushed her past the boys in football jerseys. He pushed her past the pretty, doe-eyed girls. He pushed her past the busses filled with kids texting on their cell phones and sizing each other up. Cade didn't care that he was wearing an Abercrombie shirt or that his hair closely resembled James Dean's hair in "Rebel Without A Cause." Cade only cared about helping this girl get to her bus so she could get home and see her family. After he had finished, I walked with him to the car. I asked him who she was. "Mom, her name is Beth. She doesn't talk and can't walk but I like playing legos with her, she's nice." At that moment I couldn't have been more proud of him than if I had watched him make the winning shot at a championship basketball game, or if I had just listened to him give his valedictorian speech. Cade's shell was not the only thing God perfected. God had also perfected his soul; mine was the one that needed some work.
My daughter has Asperger's, and I struggled through the same sort of issues...will she ever have friends...will she learn to act normal in public...will she date? I was devastated when she broke up with her first boyfriend (at age 19). What I now know is that she is the most loving, generous, pure-of-heart person you could ever hope to meet. She has learned to make friends and is now attending college, working toward a Bachelor of Music degree and maintaining a 3.8 GPA. She plays piano and guitar, and sings. My heart bursts with joy watching her blossom!
Posted by: Annie | April 06, 2013 at 03:08 AM
I have a son who is 10yrs old and has PDD-Autism and JRA When he was 7 yrs old we were approched by a photographer but never intend to persue it. As a mom taking care of a special need child can be a great challenge every day. I am an unemplyed from few years working for 15 years in the same company. My husband is employed and works minimum wage job. I know we cannot provide him with luxory items but he has all the basic necessary items at home that a normal kid would have. when I go out with him I sometimes fell embarassed but I am used to it. We both love our kid very much and he means the world to us. I get inspired by reading your beautiful story and the post of other mom who have gone through and are facing the same challenges Thanks for it and keep on writting .
Posted by: hina | May 21, 2012 at 02:29 PM
As the mother of 2 boys who happen to have autism..... I can empathize with your thinking..... what a beautiful young man you have... both inside and out :)
Posted by: margo dierdorff | April 02, 2011 at 01:19 PM
I'm tearing up here. What an amazing boy you are raising!
Posted by: Moonstonemama | December 20, 2010 at 02:59 PM
What a wonderful story. You have raised a great boy!! My daughter started middle school this year as well. I understand your feelings of wanting them to fit in. I realized her having clothes that she likes and is comfortable in is more important than a label.
Posted by: Laura Kozlowski | December 17, 2010 at 05:46 PM
*crying* Thank you. I only hope that my son grows up to be just like yours!
Posted by: Kevin | December 15, 2010 at 08:11 PM
as a mom of a special needs kid (SPD), she is way more honest & open than me...there are moments (days sometimes) when I WISH my daughter were less difficult...I worry ALOT about how middle school will be-but for me, like this mom, I had a huge epiphany when I saw her with the other kids...she was just their friend to them. And when her sensory issues flare up, they help her (coordination is a big problem for her now)...and then I go to her school and heard how SHE helps the other kids who have more profound issues and that her kindness to them has helped their confidence...and I feel proud of her & ashamed of myself for wishing she was anyone other than who she is. I guess what I am saying is, it is a process for parents of special needs kids...at every stage we have to let go of the dreams we have for our child and look to the reality of who they are-and marvel. It is very freeing to hear someone be so brutally honest about that process, cus the guilt makes us keep that aspect of the struggle to ourselves. It's not that we don't treasure our kids, it's just that as a parent, you want the moon & stars for your children-and when you feel there is now way you can help them get that, it can be crushing. But then, the reality, the WONDER of who they are can really be seen, once you let go....
Posted by: Michelle Caez | December 14, 2010 at 07:57 PM
This story made me cry! As a mother of an autistic son I love reading stories like this! I felt compelled to share this story on my website!
http://imnotyoureverydayaveragemom.blogspot.com/2010/12/beautiful-and-heartwarming-autism-story.html
Posted by: Jessica | December 13, 2010 at 02:34 PM
Thank you Deb! From the first to the last paragraph I have been spellbound! Your post is simply amazing...what a great message for all parents of Special Needs children.
Lorna d'Entremont
www.chewelry.ca
http://kidcompanions.blogspot.com/
Posted by: Lorna d'Entremont | December 13, 2010 at 07:35 AM
Awesome article! My daughter is 12 also and does some things appropriate for her age and other things, inappropriate....The one mention that really got to me me was..."if he could just have one friend". My wish exactly.
Anita
Posted by: Anita | December 13, 2010 at 12:49 AM
Very moving... Thank you for sharing your experience. It could be our story. I, too, need to let God work on perfecting my soul!
Posted by: Brenda Jo Gillund | December 12, 2010 at 09:30 PM
I'm a single mom of 2 and I find your site very interesting. Let me take a tour on your other post. I hope I have much time each day to drop by and check your site for recent post.
Posted by: single mom | December 12, 2010 at 08:28 PM
I loved this story. I think we can all worry to much about how we and our kids look at times, and this was such a great reminder of what is important. Yeah, A&F is a confusing place. That's what I feel lie doing when I get in there- sitting down or maybe even sidling up to the cashier bar thingy and ordering a drink. Cade's gonna do just fine.
Posted by: Jen | December 12, 2010 at 08:27 PM
Lord Have Mercy, what a story!!! It is heartbreaking and beautifully inspirational at the same time....
And this mother is such a talented writer; her gift of sharing her thoughts and feelings is exceptional.
As this poignant story demonstrates, our disabled children can teach us about what really matters in life.
When I think about how my own life changed through mental and physical disability 20 years before autism happened to my grandson 3 years ago, I can now base my concepts of disability on what I call the "Theory of Relativity" [not Einstein's theory but my own] By comparison, in spite of all of the negative experiences, I can usually see the beneficial outcomes and focus on that instead of the understandable fears and anxieties, and even the fears and anxieties are motivating forces to seek solutions. In the world of Relativity, everything has a positive aspect somewhere...even the painful devastations have a lesson that can lead to a better ability to conceive of the realities in a more hopeful light...but when I lose sight of Relativity, the fears and anxieties take over.
Having spent the first 36 years of my life in good health and taking all of that for granted, my descent into disability was devastating, but over the last 20 years of surviving my own trials and tribulations I evolved into a person who was prepared in many ways for my grandson's descent into autism. But did I ever really think that my own disability would have any positive benefits? No, not in the beginning, and not for many years....but once I could conceive of the relativity of "this as compared to that", I had an emotional breakthrough which has enabled me to find the "silver linings in the clouds"....most of the time but not all of the time....although as long as I realize that over time this concept of relativity will manifest, I can keep going.
Here's the difference however, between myself and most others who find themselves in the autism boat, "swimming upstream with No Boat and No Paddle".... For so many people who do not realize that there are answers and solutions and hope for recovery, I CAN'T IMAGINE THE HORROR OF THIS!!! For many of us who read Age of Autism we have become aware of therapies and the improvements we see in our children give us hope for further improvements, so we keep searching and keep trying that which logically makes sense. Knowledge and Hope propels us, but how is this autism life even bearable for so many that have no accurate understanding of vaccine toxic injuries and the methods of recovery? Even when we aren't sure of the next step in the recovery process, we still do know that there are more therapies to pursue and potential solutions.
But one thing about my "theory of relativity" that has evaded me is the heartbreaking reality of millions of children with autism, 40,000 new diagnoses every year, and only a fraction of these children will benefit from even the most basic therapies of probiotics, Methyl B12, Glutathione, nutritional support, etc. An even smaller percentage will ever benefit from Hyperbaric Oxygen because even those of us who know about this usually can't afford it. I can't find any silver lining to this cloud, but I am going to keep praying and keep trying to find more answers for my grandson, and I am grateful for his progress thus far, and grateful for the many lessons in life that he is teaching me.
Posted by: Autism Grandma | December 12, 2010 at 08:18 PM
I so get this! Thank you for sharing a beautiful story. I am the same with my boy and we are working on making a movie together using characters he has designed online. I believe our children will have great lives and we can count on them to make a difference with people like your son did for that girl in school.
Posted by: Sunshine | December 12, 2010 at 07:24 PM
This story really touched me in a very powerful way. I have felt so many of the same emotions with regards to my son. It's a process for sure.
I wanted to add that my son is also in middle school. Recently, his school started a wonderful program called Rachel's Challenge. It was created by the family whose daughter (Rachel) was the first victim in the Columbine shooting. There is a great deal of emphasis on empathy and inclusion of all children. So far, I'd say my son has benefited. Just recently, a boy who has been bullying him has become nice to him. I'm not sure how long the effect of this program will last, but I think such a program could benefit many of our beautiful children.
Thank you so much for this beautiful story. Your son is incredible.
Posted by: luckymom2D | December 12, 2010 at 07:20 PM
Dear Deb,
You have touched my heart!
You touched on and clearly expressed
the emotions and feelings that many
of us affected by having an autistic child
in our lives, often feel and experience
Thank You!
Paul S
Posted by: Paul Shapiro | December 12, 2010 at 06:21 PM
Ms. Mylander,
Your son IS a model. A model of love and grace and compassion and caring. I for one adore him. You deserve to be so very, very proud. Those qualities will be with him when the gorgeous beauty fades with age. He has true beauty. Beauty of the heart.
I really believe our kids are here to teach us so many things the world needs to know.
Posted by: Lisa | December 12, 2010 at 06:20 PM
How beautifully written from your soul. You're so right, you have a gorgeous boy both inside and out.
Posted by: Nicole | December 12, 2010 at 04:38 PM
wonderful, wonderful story!
Posted by: Twyla | December 12, 2010 at 03:08 PM
Ouch.
That one hurts the heart. Hurts the heart in a good and painful way.
Riley is one of those boys that people say is beautiful. I've heard people refer to him as "pretty", as in "pretty boy". His big blue eyes and his shock of blond hair also grabs attention. When he has his long hair, I've heard it a thousand times, "Wow, he could be a model". Then they look at me with sympathy..."that poor mother and the lost modeling career of that child, that's just too bad". He is pre verbal, still wears a diaper and stims like it's no body's business. BUT he always has ONE girl in every class that says..."Riley's my boyfriend". Granted, we're talking two preschool classes, one kindergarten class and one first grade class but STILL there's always one girl. I guess girls like the strong "silent" type.
Are those same girls going to be saying that when he's a 5' 10" stimming teenager? No matter how pretty he is, he may never have a true friend. I've watched him stand and watch other children play on HIS swing set. He gets very close and makes noises. They always ignore him and go on to the next activity. Is it wrong for me to want to grab these kids by the back of their coats and MAKE them pay attention to Riley? Is it wrong that I want them to have SOME empathy for a child that so desperately wants to be part of their world? Is it wrong for me to want to try to explain to a child ALL that is RIGHT with Riley, not to alienate him, to include him in their reindeer games? Is it wrong for me to want to tell them how funny he is, how kind, how loving he is?
I break a little inside as my son watches these kids walk away. I pray that "someday" these kids will grow up and have the kindness and empathy for kids like Riley. That maybe someday these kids won't be the ones calling him a "retard" on the bus. That someday, they will be the ones that stick up for him instead of giving into peer pressure. I want these kids to kick someones ass if they even dare try to make fun of Riley and then a light bulb turns on...no one loves this child like I do. No one sees his soul like I do.
This is a mothers pain. Deb, thank you for writing today. Some times reading the things that "ouch" the heart can be theraputic. Cade is a good soul, you've done "something" right when your child puts his needs second and has the spirit and empathy to reach out to another person. I am very proud of Cade for being the young man he IS and the young gentleman his mtoher raised him to be.
Posted by: rileysmom | December 12, 2010 at 01:15 PM
That makes my heart happy. My daughter is three and a half and has a crush on a boy in her special ed pre k class. I just wrote about it (not nearly as well) on my blog, and as I did I kept thinking how proud I am of her. Just like I know you are of your son too. Thanks for sharing.
Posted by: Sarah | December 12, 2010 at 12:50 PM
What a great story! I feel like I know that boy, and am glad I do! The coolest kid at school.
Posted by: Sylvia | December 12, 2010 at 12:31 PM
Wow you weren't kidding when you said that boy was handsome.
Thank you for pointing out the need for these kids to "look cool". Put the clothes on your kids that are age appropriate. Leave the sweats and the TV-show-themed clothing at home.
Posted by: Steve | December 12, 2010 at 11:34 AM
Deb,
Great story. Absolutely beautiful, inspiring, and hopeful. Your son obviously has a heart and soul of gold. Don't beat yourself up about your own soul. Your son's caring and helpfulness towards his classmate come from somewhere and it's been my experience that kids imitate what they learn at home. I'm sure he learned his generosity and kindness from the love he gets at home.
Posted by: Concerned Mom | December 12, 2010 at 11:19 AM
God Bless you and your son.........we are blessed more then we know <3
Posted by: Jeanmarie | December 12, 2010 at 11:15 AM
WoW!
I have been humbled like that before too!
Such a sweet story!
Thank You for sharing it with me!
Posted by: Benedetta | December 12, 2010 at 11:14 AM
Oh my gosh... What a beautiful ending!! It reminds me of my son - quirky yet he has an amazing heart. Thank you so much for sharing!!!
Posted by: Renee H | December 12, 2010 at 11:03 AM
Amazing and thank you for sharing Deb, We used to say our son was the poster child for ASD, his image has been used in many promo materials and brochures for ASD awareness over the years. It opened doors also to him seeking more within acting and taking drama classes at school which really opened even more doors within his high school community. Yes our children can be role models each and everyday for others in so many ways. You son's empathy and compassion also disproves many myths about what folks feel within our children's capabilities. They can, they will, and they do has always been our motto and if they aren't....well we need to open those paths of opportunity.
There is a book that I would urge folks to get if you haven't. "Embarassed Often, Ashamed Never" by Lisa Elliot discusses many stories such as this one,our feelings and knowing that we are not alone. Good also for educators and others that are in our communities and natural circles of support. There is a very big difference between these emotions and it is essential that we identify them and work toward showing what we feel is the same as we would really for a child that wasn't living with ASD in my mind.
Great story and best wishes for Cade's future and community involvement.
Carolyn
Posted by: gammicca | December 12, 2010 at 10:20 AM
That was just beautiful! Thank you so much for reminding us about the souls of autism.
Your writing is superb and shows the gifts that you both have.
Posted by: Teresa Conrick | December 12, 2010 at 09:57 AM
This story brought tears into my eyes. This world became so superficial. If something doesn't look like up to our or others standards we wrote that person off. We never look beyond the obvious. we do not value what really matters. We all have these feelings of wishing our children to belong to, look like or act like others. Deb i felt that way for a while, felt guilty about it too until my son showed compassion toward another child. Than I realized he is better than any others in his school. He has a heart and focusing on humanity instead of little electronic meaningless gadgets.I was ashamed feeling the way I felt. I love my son unconditionally now, and always hoping for the best. Thank you for this beautiful article.
Posted by: Aasiyah Bint | December 12, 2010 at 09:50 AM
I feared up myself. My son, too, has been told he is model material. But I was always concerned he couldn't do what was necessary. He has an ASD and hypotonia. But I think I have learned that he is so much better than normal. He is amazing
Posted by: Maryann | December 12, 2010 at 09:46 AM
p.s. just so parents know, being a model is way over-rated. been there, done that, and almost died in the process. remember anytime your job is based on your looks... its time to find a new career.
Posted by: Jane | December 12, 2010 at 09:34 AM
That was a beautiful story. It made me tear up at the end. I am glad the Author no longer refers to her son as damaged. If you refer to your child that way then his siblings and peers will as well.
Posted by: Jane | December 12, 2010 at 09:33 AM
This is one of the best pieces I have read on A of A in a long time - thank you. Beautiful.
Posted by: Parent | December 12, 2010 at 09:31 AM
Beautiful story, Deb.
Posted by: Cat Jameson | December 12, 2010 at 08:46 AM
Sweet!
Posted by: Holly M. | December 12, 2010 at 07:12 AM
Deb, yes, our damaged kids can be a force for healing: of our world, of ourselves. I second the motion in my post on "Special Needs, Special Gifts" at http://ow.ly/3nOMk
Thank you, Deb, for this beautiful story and this important reminder.
Posted by: Dan E. Burns | December 12, 2010 at 06:30 AM