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Posts Tagged ‘mother’

In Their Own Words – Be Still

July 29, 2010 27 comments

Photo by Susan Frank Lowe

This “In Their Own Words” is written by Cheairs Frank Graves, a Charlottesville, Va. mother of two. Her son has autism.

“Be still and know that I am with you.”

These are words that I have heard in church and at Vespers during my days at summer camp, but it is my son with autism who is teaching me the meaning of these nine words.

“With you” is not exactly how I would describe my ongoing relationship with my son. There are days when he is present, laughing and smiling, and there are days when rolling on the floor and dropping marbles in front of his eyes are his activities of choice.  Words cannot describe the sadness I have felt when my son turns his back to me when I try to play with him or when he does not respond to his name. It is an empty feeling – a feeling of failure – and feelings of why.

But along this journey my son is teaching me. If I listen hard enough, he is screaming, “Enter my world!” when he turns his back to me.  If I sit next to him while he drops the marbles in front of his eyes, he might just look at me and smile.

“Be still and know that I am with you.”

If I lie on the carpet when he is rolling on the floor, he moves next to me.

“Be still and know that I am with you.”

If I sit next to him in the front yard, listening and repeating words back to  him – words that he is saying, then I can see his beautiful, blue eyes light up and his crooked smile appear.

“Be still and know that I am with you.”

If I am very still as he comes down the stairs in the morning, I can begin to smile at his ritual of closing off the bedroom and bathroom doors that lead into our room.

“Be still and know that I am with you.”

If I am present when he crawls into the bed and folds himself into the warm comforter, I can celebrate the little life that is lying next to me.

“Be still and know that I am with you.”

If I wrap my arms around him as he puts his head on my chest, I can hear him breathe. My sweet little boy.  My precious little boy.

Mommy, “Be still and know that I am with you.”

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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In Their Own Words – Expectations

July 28, 2010 8 comments

This “In Their Own Words” essay is written by Erin Perry. Her son was diagnosed in March of this year. You can read more about Erin and her family at their website Autism Village.

Life is full of expectations. From the minute we all enter the world, we are expected to do things like walk, talk, go to school, have a first kiss, graduate, get a job, have a family – the list goes on and on. So entrenched are these expectations that we live our lives by them, become upset or disappointed when we don’t meet our own (or more likely when other people don’t meet ours) , and we judge others according to them. Expectations are a powerful tool – but when you have a child with autism, in an instant every expectation you once had, is ripped away leaving you feeling raw, vulnerable, and frankly, scared.

I have always been a very driven person. I expect a lot of myself, and I expect a lot of others. So when I found out I was pregnant, I built up in my head what my life would be like with a child. I imagined taking family vacations and watching my son play sports. I thought about  the late night conversations we would have when he came home too late for curfew. I expected that it would all be typical, normal, and even (dare I say) easy.

With Brayden’s diagnosis, I have learned there is only one thing to expect – the unexpected. The first adjustment I had to make was letting go of those later in life dreams, for now. No more thinking about college and grandkids – my son lives in the moment, and I had to learn how to alter the way I thought to only include the immediate future. Instead of looking forward to college, we work with every breath to hopefully get Brayden to kindergarten, and maybe even in a mainstream classroom, but that is about as far in the future we go.

On the other side, when we heard the final diagnosis of autism, certain expectations also go along with it. It’s the long list of things your child may not and will not ever do. But that’s the funny thing about autism – just when you expect your child to never do something, he will blow away that expectation. My child has a frequent habit of doing  just that. For me, I believe it’s his own little way of saying, “See, mommy, I can do it – keep pushing, keep going.”

Today at Brayden’s new developmental preschool, he sat in a classroom full of seven or eight of his peers, and when the teacher sang “Old McDonald had a…” and stopped, waiting for one child to shout out an animal so the song could continue – my son screamed out, “A COW!” For those unfamiliar with my son, he very rarely says anything without a prompt by an adult to do so. What most people would expect a child of 2 1/2 to do naturally and easily…turned out to be the best unexpected surprise of my day – and another little moment that whispered in my ear, “Keep going, Mommy.”

When Brayden was diagnosed, we expected many things that never came true. We expected to have a better support system, we expected insurance would cover therapy, we expected that people would be accepting of our son. But when our support system crumbled, insurance wouldn’t pay, and people started judging our son and us – other, more positive things, have filled the damaged parts of us. We never expected the support and kindness of so many strangers. We never expected so many people to reach out to us the way they have – and fill our lives with hope again. And we never expected people to be willing to give up time, money, thoughts, and prayers – all for our little boy.

So while we now are learning to let go of expectations – it is these positive unexpected things – that make me still have faith in the world (as cliche as that sounds), and push me to keep going for Brayden every day.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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In Their Own Words – What Not to Wear, Autism Style

July 20, 2010 45 comments

This “In Their Own Words” essay is by Laura Shumaker. Laura is the author of “A REGULAR GUY: GROWING UP WITH AUTISM.” Join the discussion about her book on Facebook.

It was 103 degrees, the hottest July 3 on record for our community in Northern California. My son Matthew, who is 24 years old and has autism, was getting ready to go the local saloon with his younger brother Andy to sing karaoke, one of his favorite activities.

“I’m ready,” he said, and as I turned to say goodbye, Matthew stood before me in a long sleeve winter wool plaid shirt, khaki pants and dress shoes.

To top off the look, he had cut his bangs too short and tried to hide the botch job with a comb over. He had patches of toilet paper soaked in blood all over his face from shaving.

He was beaming.

“Matthew,” I said, “you really should change into something cooler. It’s really hot … ”

“I look good!” he argued.  “”I’ve been planning on wearing these clothes all week!”

He did look pretty good, at least better than his standard shorts, t-shirt, dark socks and sandals.

Andy shrugged with resignation in the back ground, but insisted that Matthew clean up the shaving cuts before they left.

I asked parents on my  Facebook page to tell me which battles they’ve given up fighting. Most, as you can imagine, had a hard time picking just one.

I have struggled for years over Matthew’s clothing choices and grooming routine. Thankfully, he’s embraced the idea of the importance of physical hygiene (though a little obsessed with a close shave) but the clothing battle is one I’d given up on. As Matthew walked out the door that night, it occurred to me that it was time to help him work on his image. He was, after all, looking to meet some nice girls. He was going to need all the help he could get. The challenge would be finding a way to get the message across without lecturing him.

An idea came to me.

I got the Halloween box out of the attic and fished out some cheap wigs that we’d collected over the years. I convinced Andy to help me put together some “regular” outfits and some oddball outfits enhanced by a Sony Bono mullet and the Morticia wig.

“We’ll make it a game!” I told Andy, “We’ll ask him to pick the outfit that looks the craziest and the one that looks the most regular. “

“You realize this is going to backfire,” said Andy, “and that he’ll want to start wearing the wigs around.”

And of course that is exactly what happened.

So I’m backing off again. You have to hand it to me for trying. The good news is that Matthew and his social skills counselor are going people watching today at the mall. (Her idea, not mine)

Maybe he’ll get some fashion tips there.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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In Their Own Words – What I Believe and What I Know

July 18, 2010 21 comments

This “In Their Own Words” essay is written by  Susan Levy is a working mom with a teenage son with autism. Levy currently runs Gilbert Hall School, a small non-profit school for children with neurological disabilities and incorporates a program called Relationship Development Intervention (RDI). She is also on the Board of the Los Angeles Chapter of the Autism Society.

I had a really great time being a mom when Jacob was a small child. When he was really young, I was fortunate that I was able to run a successful business from home. This allowed me enough time to taxi Jacob to his various therapies and doctor’s appointments. This changed starting when he was 7, and the business started to tank. I’d soon have to find employment that allowed me to work full-time and to also be Jacob’s primary caregiver, and it wasn’t easy. But in his early years, I had the luxury of being a full-time Mom and I loved it.

During this time, we had a lot of fun times together – visits to the beach, the various parks in the area, Museum of Natural History, Los Angeles Zoo, Long Beach Aquarium Legoland, Disneyland, Universal Studios, Magic Mountain, and more. One amazing vacation took us to Bern, Switzerland for 3 weeks, and Jacob spoke about it for years afterward. Because money wasn’t an issue, I could do these things and focus solely on Jacob. Though his behavior could be difficult at times, I remember that we shared a lot of positive experiences and happy times together.

Jacob was an incredibly beautiful baby. Not that I would have loved him any less had he not been, but he really was the most gorgeous infant. Big blue eyes, golden blonde hair, the sweetest face ever. Even though he’s now a teenager and taller and stronger than me, he’ll always been my little boy. The early years went by quickly, and I don’t regret one moment of my time watching Jacob grow up. His diagnosis hasn’t changed that. It hasn’t really helped me to love him more, but it certainly has given me a determination to see that he grows up to reach his fullest potential. Over the years, I think I’ve done a good job helping him do that, but I’ll never stop trying until I know he’s happy and living on his own.

So with that said, here are the things that I’ve come to know and believe in my journey with Jacob through the land of autism.  Even though Jacob was considered “high functioning”, I still believe that all of these apply to any child diagnosed with an autistic spectrum disorder.

My son has a disability, the disability does not have him. Saying Jacob is autistic sounds like that’s all there is to him. Saying he has autism puts it in better perspective. Autism doesn’t define him, it only offers a partial explanation why he is the way he is. It helps to make sense of his limited interests, why he insists on telling the same joke over and over again, or why he rejects social settings when it’s with people he doesn’t know very well.

A child with autism can teach you many things: how to remain calm even though your buttons are being pushed beyond what you thought were your ultimate boundaries, how to love someone more than life itself even though at times it’s really really tough, and how to remain composed when your child has a complete meltdown in public. You learn more patience than you thought you could ever possess.

One of the most important things a parent can do is to accept their child as they are instead of trying to change them into something they are not. I never felt sorry that Jacob would never be the child I wanted him to be, but that doesn’t mean that sometimes I wished things were easier and he didn’t have a disability. This can be a difficult thing to do when you have a child on the autistic spectrum, but I can honestly say having to deal with Jacob’s disability has increased my ability to accept others regardless of how different they may be.

We are all people, disability or not. Everyone has distinct likes and dislikes. Everyone has a desire to love and be loved. Everyone has a need to have fun and enjoy the good things in life. Just because someone has autism, doesn’t mean they’ve lost their humanness.  Just because they are non-verbal or they flap their hands or walk on their tip toes just means they are interpreting the world in their own way.  Even if they are also mentally impaired, they have feelings just like you and I.  Everyone deserves respect for the person that they are, not be judged for the person they are not.

Children with autism are not sick or diseased. They are not victims. They have a disability for which they need remediation. They need help learning how to transition successfully in their communities after they leave high school or college. Seeking a cure for Jacob because he’s a victim of autism would imply that there is something terribly wrong with him. In reality, the reason for Jacob’s behavior is the result of his brain not being neuro-typically wired.

Treating co-concurring conditions, like dietary sensitivities, can help mitigate behavioral issues. For example, if your child is non-verbal and has a wheat allergy, he might get a stomach ache when he eats something that contains wheat. Because he can’t tell you in words that his stomach hurts, he’ll communicate his displeasure by being upset. This isn’t due to his autism, it’s because he has a pain in his stomach and the only way he communicate is through his behavior. Take out the wheat and the upset behavior caused by the pain in his stomach will end.

For children on the autistic spectrum, the world is a confusing and overwhelming place in which to live. They don’t know how to act with their friends, they don’t understand what is happening in the classroom, and they have a difficult time with their parents. They may have a sensory issue that makes wearing clothing or shoes very uncomfortable. They may have a problem with communication and they are constantly frustrated when they have problems expressing their thoughts and feelings. If you really think about this, how would you feel if every moment of every day you felt incompetent, misunderstood, or unable to navigate in your environment.  As much as it’s sometimes difficult to be the parent of a child with autism, just think about how hard it is for the child when the world is a constantly confusing and scary place.

The eye on the prize for your child is to help him achieve a quality of life with meaningful employment, close friends and personal relationships and the ability to live independently.  Any and every treatment, therapy and intervention needs to be done with this in mind, always and with no exception. Time and money are limited resources. Be sure to use them wisely.

Parents need to have experiences with their children. Sharing time with Jacob is something I’ve never regretted. Even though his behavior could be at times completely annoying and exhausting, I know that our time together was one of some of the best time I ever spent for both him and me. Shared experiences build positive memories.

Most importantly, don’t give up hope.  There were many days that I wondered about Jacob’s future. Would he ever have friends?  Would he graduate from high school?  Would he attend college?  I still have these thoughts, but I am much more positive that Jacob’s future than ever before.  So for all the parents of a child with autism, no matter what your child’s diagnosis, whether he is high functioning or low functioning, verbal or non verbal, always keep in mind that you are the key to his success.  The future of your child is at stake.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – I Want to Have a Party!

July 14, 2010 19 comments

This “In Their Own Words” essay was submitted by Edwinna McHale, who has a son with autism.

My son asked a question today! But, you might ask, why is that such a big deal?  Every three year old asks questions, don’t they?  They just drive you nuts with questions, don’t they?

Of course they do, but my child is 13. Never before today had he asked a question just to get information. Not, at least, without a monumental amount of effort, prompting and scripting. Today, as we were repeatedly circling the parking lot trying to find a space close enough to the clinic door, with the irritation that can only be a boy of 13 who has lost patience, he asked me “Why are we driving around in circles?”

And now I want to have a party!  When you walk the autism road, you celebrate the smallest accomplishments. Sometimes, they are the only kind of accomplishments you have to celebrate.

Tommy learned early on, how to ask questions to get things he wants – like asking for food.  But, most three-year-olds start to look for information. Why do things work this way? Who is that person? Where are they going? When will we get there? What are you doing? Until today, the only spontaneous questions my son has ever asked was when he wants something. “Mom, may I have a Diet Coke, please?”  “Mom, can we go to McDonald’s, please?” But never, before today, has he asked a question in order to obtain information. And never before today, has he actually listened to any answer more complex than “Yes” or “No.”

When he was four, I wondered if I ever would hear him tell me “I love you, Mommy.” I never did. When he was six, I would say, “I love you, Tommy.” And he would answer “Me, too.” But it was not until about three years ago, that he spontaneously said “I love you, Mom” for the first time in his life. He was already too old to be willing to call me ‘Mommy” but he could, at long last, tell me that he loves me!  I wanted to have a party then, too.

We wanted to have a party when he was five and got dressed by himself for the first time. When he was six and a half and was able to pick out a complete outfit for school the next day. When he was eight, and he could tell me “My tummy feels sick.” Such small things, really.  Most parents take them for granted.  It’s just a natural part of growing up, and all kids do it, right?

But for a child with autism, even learning how to look at a friend, smile, and say “Hi!” is a process that can take years. And suddenly, one day, without any warning, HE DOES IT! And we want to celebrate. People ask me why such small things warrant a celebration. I tell them that they will never know how hard it was to get here, but the fact that the journey was hard is reason enough to celebrate when we get here.

I am thankful that my child has taught me to appreciate and celebrate the small victories, and to truly understand how monumental those small victories really are.

So, my son asked a question today, and I want to have a PARTY!

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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In Their Own Words – From a Mother’s Heart

July 11, 2010 7 comments

This “In Their Own Words” essay is written by Valerie Fuentes. Valerie has participated in the Pittsburgh Walk Now for Autism Speaks a a member of team “Hike for Mike” for eight years.

I feel broken … or I should say my heart feels broken. At times it feels heavy, too heavy to carry around on a daily basis. Other times it feels lonely, so lonely it hurts. Often my heart feels full: full of love, of happiness, of peace. Sometimes, it can feel cold and empty; or full of anger and sadness. At times, it is too much to bear. Too much …

I am a mother of a special needs son. Mikey is my blessing, and I am proud to be his mom. He gives me great joy and happiness, for he not only allows me to see the world through his eyes, but he teaches me about patience and acceptance. Mikey is by far more tolerant of this world than I am, for I see the world mistreat him and label him. He is completely misunderstood and, sad to say, feared.

I, on the other hand, am not as kind or as accepting of this world. Ignorance, cruelty and apathy abound, and this is the world Mikey lives in. As his mom, I love him unconditionally. But often, this is not enough. Unmistakably, it is a battle, a daily battle, to protect Mikey from the world. Nonetheless, it is my job to integrate him in this cruel world, and help him adjust, to fit in.  Yet all I want to do is hold him close to my heart, keep him from harm and hurt, to scream at all the ignorant people in life.

Mikey is has autism and is nonverbal, and the world is not willing to accept him. Often it is the lack of knowledge and awareness of this disorder that feeds the fear and the ignorance. Labels are easier to deal with, not the person. How unkind, harsh and merciless the world can be to anyone “different.” As his mom and his protector, I want to stop the hurt. As his voice, I feel obliged to educate, to end the ignorance, and to teach kindness and respect.

There are many positives about being a mom of a special needs child. The road is not an easy one, and you may often travel it alone. However, the journey will change your life. Watching Mikey live each moment to the fullest is indescribable. He has taught me how to embrace life, and how to take time to enjoy the little things. Mikey has touched many hearts, and he has changed many lives. Learning to see the world through his eyes has been an enriching experience. He has shown me how to deal with adversity, and how to put a smile on my face everyday. Most of all, I understand patience and empathy for the first time in my life.

Despite the many positives of being Mikey’s mom, I must admit I long to genuinely understand the world in which he exists. The world of autism is unconquered; it is a place where minds drift and voices fall silent. Sometimes I feel it is a dark and empty place; other times, I picture it as a parallel existence, a place where a higher intelligence dwells. Where does Mikey go? How can I reach him? It often feels like I am moving in slow motion, trying desperately to pull Mikey out of the water. He will drown if I do not make this daily attempt.

Learning about the world of autism is a journey, one which I embrace daily. Each and every day I pray for a miracle for my son, and every night I thank God for the day I spent with Mikey.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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In Their Own Words – Doing the Odd Job

July 8, 2010 12 comments

This “In Their Own Words” essay was written by Rose Wade. Rose has two children, including a teenage son with autism. She is a military wife and the founder of The Robin Hood Lego Campaign Advocating Autism Awareness and Lego Therapy.

Summer is here. Officially, as the last day of school for my kids was on Thursday. I know a few moms whose kids have been out for two weeks already. And to think that our school district didn’t even have snow days to make up. Otherwise, I’d be poised at the door until July 1st, waiting for the first opportunity to toss the kids into the pool.

Ah, the pool. We have a new one. One of those ready-to-pop plastic deals with three colorful rings that have to be blown up. By mom. That pretty green of the plastic doesn’t make the job any more fun. But, we have to go with the temporary pool for now. We’re moving soon and I like to pack light. Given my husband’s propensity for shopping, I’m always recalculating the household capacity for storage. “No, hubby. Don’t buy something new until you get rid of something old first. And quit looking at me that way or I’ll start charging you for storage.”

Thankfully, my dear son, Matthew, managed to traverse our very full garage to find the pump we use on our camping gear. Matthew has yet again saved me a bit of work. “Mom, why is your face so red.” “All of my breath is inside the pool, dear. No, don’t…*sighs…step on it.”

A few minutes of the pump to the rescue and Matthew gets the biggest smile of satisfaction when he’s able to be helpful to someone. He’s also sure to make sure you know it. Matthew won’t hesitate to ask if I want to thank him for helping me. “Yes, darling. I always do. Thank you.”

The day is saved! Almost. The lawn needs to be cut before the pool can be filled with water, children, toys, and begin its rapid approach to untimely holes and quick patch jobs. “Pass the duct tape, please.”

Matthew has decided that he wants to learn to do ‘odd jobs’ so he can earn extra money during the summer. The older he gets, of course, the more he wants to be like his dad. Well, his dad is often away from us for deployments. Yes, it’s just me and the kids. And my son who has autism wants to be man of the house.

So, still flying high from ‘saving the day’, Matthew is confident and ready to tackle learning to use the lawn mower.

Well, my backyard is currently more of a jungle, thanks to frequent rainstorms and an uncooperative mower that allowed the grass free reign to grow to two feet high. And Matthew wants to mow it. It’s like me at 14 nagging my dad to teach me to drive. I didn’t care that there was a foot of Chicago snow on the ground. Not the best conditions, but try rationalizing that to a determined child.

But, I’m not one to squash my son’s enthusiasm. Especially when so few activities light up his eyes and hold his interest. Anything that involves actually venturing outside of the house is usually rock-bottom on his list.

With Matthew looking on eagerly, I went through the finer points of how the lawn mower works. Step-by-step. Fill the gas, check the oil, prime it, etc. It’s somewhat difficult to do since Matthew will ask a question while I’m in the middle of an explanation. I’ll have to redirect him and start over.

I found it takes a lot of thought to explain how and why the lawn mower works, what not to do, how to be cautious. All the while making certain he understands and without overloading him with information.

Nearing 13 years old, Matthew is almost a teenager. But autism renders his behavior and actions immature. I know how old Matthew is in years, but I see him approach a gas-guzzling, loud, bladed machine, and I see the innocence of a five-year-old child.

It’s funny to me that Matthew seems confident with the lawn mower itself. He’s a big kid. He gave the pull a half-hearted yank. “Matthew, you have to do it in one pull or it won’t start.” “But mom, I don’t want to break it.”

So, he’s not afraid of the mower. But he hates touching the grass. He thinks it’s gross. Instead of touching the grass, grabbing it and helping empty the bag into the bin, he tried to use the end of the rake. “No, Matthew. That won’t really work. It’s just grass. You can touch it.” I had to repeat and demonstrate five times before he would attempt it himself.

Matthew is in an odd stage, for me, I realize as I watch him tentatively push the mower over the grass. I have to applaud, encourage, and teach him, feed his enthusiasm. And I have to balance my caution of teaching a child to use a lawn mower with teaching a child with autism to use a lawn mower. All of this has to be done to nurture his firsts and his accomplishments, without reverting to the over-protective hovering mommy that I often have the urge to be.

Matthew has managed to mow a small section of the lawn. He’s excited to tell his dad about it during the next phone call. While writing this post, Matthew knows it’s about him. He reads over my shoulder. I asked him to hold off questions until after I’ve finished or else it’ll break my concentration. He began to pace back and forth. Then stopped. “Mom, can I go finish mowing the lawn?”

I know, a lot of parents would jump for joy to have their kids volunteer for the task. I’m sure once the novelty wears off and he’s had to mow the lawn a few times, he’ll start disappearing when it needs to be done. Or bemoan in full teenaged fashion and ask for a raise in his allowance.

We’re not there yet. I have a child with autism who needs a touch more guidance through his accomplishments. I’ll enjoy his enthusiasm while I can. For now, he’s actually outside, raking grass. As long as he doesn’t have to touch it.

The next accomplishments are already on the horizon.

“Mom, when I’m 14 are you going to teach me to drive your car?”

“Um, yes, but maybe not my car.”

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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In Their Own Words – What Our Hearts Knew From the Beginning

July 3, 2010 16 comments

This “In Their Own Words” essay was written by Jessica Fournerat, who has a five-year-old son with PDD-NOS.

This is hard for me to admit, but as I meet more and more parents in similar shoes, I feel more comfortable opening up about my feelings about having a child on the spectrum.

All my life I have been a helper and have felt a calling to reach out to others, a calling that I never seemed to find the right way to fulfill. All the while I swore I would never have children.

Flash forward several years and I was pregnant in a new city with a new husband. I found myself in a quiet moment talking to my God.

“Ok, so God here’s the deal. I know I’m an older mom and that my baby may have challenges. That’s okay, I can love any child, but I am not sure I am up for the challenge of a child with autism. I don’t know how to relate to someone who is shut off from the world.”

You see, like many people who had no experience with autism, I was under one huge misconception. Those children with autism were emotionally cold and could not feel love for or from their parents.

Well, God answered my prayer and gave me the most amazing child I could have asked for. Jaxson was a smart, funny, stubborn, super active child with an amazing sense of empathy. Soon after learning to walk he blessed us with what we called “Run and Hugs.” He would run from the other side of the room, crash into us and hug us so tight.  Sometimes he would come up behind me and just squeeze as tight as possible and smile. He would cry when he saw sad children on TV shows far before children are supposed to develop empathy. As I learned more about autism, I learned that some of this was sensory seeking, as well as auditory processing issues. But I don’t care what label you put on it. This boy could LOVE.

Jaxson could not communicate verbally until he was three and a half. But he could get his point across. He once used a combination of sign language, gestures and PECS to communicate quite clearly that he wanted our cat Harley to eat a banana. There was no doubt that was what he wanted and when I held the banana up to Harley’s mouth he exploded in laughter and gave me the biggest hug. It was like he felt so wonderful that I understood him.

Not long after, we obtained an augmentative communication device for Jaxson and he took right to it. He was speaking on it the same day that we went to try it out.  This device opened the door for him and in the blink of an eye he was using his words verbally.  He started with Numbers and moved to the alphabet and soon it was words. What was great was that with the sentence structure of the Dynavox when he started talking it was sometimes in full sentences – “I want more juice, please.”

But the most amazing moment, I think, was walking in on him practicing the word “Mama.” He was saying it in a guttural tone and it seemed like it was important that he get it right first. Within days of that moment, he began to say “Mama” regularly and my heart just exploded.

All the experts we have dealt with have been amazed by Jaxson’s success.  They did not see what I saw from the very beginning – a young fireball with his hands reaching out to grab his future and direct it where he wanted to go. I always knew that even when he could not speak our words, he most certainly could understand them. I am so happy that the world can now start to see what our hearts knew from the beginning, that these children are so much more than any label and that they have countless gifts to give the world.

Jaxson has brightened my world. While the challenges do often arise, I find that it is his spirit, love and perseverance that keep us moving forward. I have found my way to reach out. I need only reach out within my own home to find my chance to help and be helped by a child so extraordinary.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Miracles Have Wings

June 29, 2010 27 comments

This “In Their Own Words” is by Elaine Hall, author of the memoir NOW I SEE THE MOON: A Mother, a Son, a Miracle and founder of The Miracle Project, a theatre and film arts program for children with special needs. She is also the mother of a fifteen-year-old son with autism. Discuss the book on Facebook and follow Elaine on Twitter @CoachE.

How do you know if you are doing the right therapy for your child? With so many “remedies,” “cures,” and paths to take, how do you know if you are on the “right” one? How do we know if it’s “working”?

Like most things in my life, my answers didn’t evolve gradually; they hit me over the head. There’s a story about a man so eager to “help” a butterfly into the world that he opens its chrysalis too soon. The result is tragic: the wings never develop properly, the butterfly cannot fly, and it dies. I tell this story to parents and educators who seek to force kids with autism to be something they are not, who pressure them into compliance or try to coerce them to be part of this world before they are ready. My experience with my son Neal – who I adopted from a Russian orphanage at age two and who was diagnosed with autism a year later – has taught me that we must yield to slow yet natural progress: caterpillar to chrysalis to beautiful creatures that can soar on their own. But it took me a while to learn this for myself.

I had a significant “a-ha!” moment when Neal was seven years old. I had been taking Neal out into the community quite a bit, trying desperately hard to have a normal life and fit in. Anything that Neal was interested in, I pursued. Because Neal loved butterflies, I was overjoyed to hear about a butterfly exhibit that was coming to the Los Angeles Natural History Museum. It sounded extraordinary, a “Pavilion of Wings.” The brochure read, “Stroll through a beautifully landscaped exhibit, see Monarch butterflies, giant swallow tail butterflies, and more.” I couldn’t wait.

I prepared Neal with butterfly books and manuals. We acted out the life-cycle of a butterfly. We crawled like caterpillars, munched on leaves, and rolled ourselves into a cocoon and wait, wait, waited, until we developed wings. Then we flew around our house in a rainbow of laughter. I had often used this kind of creative play in my career as an acting coach for children. Being able to use these techniques with my own boy was even more rewarding. We had so much fun together.

Finally, the exhibit opens, and on that day I get Neal into the car effortlessly and we head downtown to the museum. Neal is a little reluctant to walk across the large parking lot, but once he nears the exhibit, his eyes widen with excitement.

We enter the Pavilion. Neal is in awe: hundreds of butterflies in all shapes and colors flick and flutter around us. Neal loves the butterflies. He loves them too much. When he sees these familiar, angel-like creatures, he wants to get close to them, to smell them, to touch them. He starts reaching out ecstatically to touch each butterfly. Like King Kong snatching airplanes from atop the Empire State Building, Neal grabs for butterflies.

“He’s killing the butterflies!” shouts a little boy.

“Butterfly killer,” screams a tiny girl.

Now all the kids and adults are yelling, “Stop him! Get him! He’s killing the butterflies!!!

”Murderer!”

This terrifies Neal. He grabs a plant and pulls it out of its pot. He knocks over other pots. The butterflies are flapping wildly. A security guard swoops in.

“I am so sorry,” I keep saying. “I am so sorry. He has autism. He loves butterflies. He didn’t mean to harm them.”

“Get that kid out of here!” someone shouts, loudly enough to be heard over the others who are still screaming at Neal.

But Neal doesn’t want to leave. He is actually quite amused by the commotion he’s causing, and I can’t get him out of the exhibit. Finally, I see some plastic, made-to-look-real butterflies on the gift shop counter. I rush to the front of the line. People glare at me for cutting in. I beg to buy one of the pretend Monarchs. I can’t wait for change, so I place a $10.00 bill on the counter, grab a fake butterfly, and race back to Neal. I use this insect amulet to coax Neal out of the Pavilion, through the long parking lot, and back to the car.

Sitting in the car, Neal and I stare blankly out the front window. I look at Neal. I see the puzzled look in his eyes give way to sadness. I start to cry. Neal stares back at me. He gets teary-eyed. He’s ashamed of what happened. We look long at each other. The tears give way to smiles. The smiles become laughter. It’s one of those situations in which everything is so terrible, that it’s ultimately absurd.

But that night I pray. “Dear God, I need help. We need help. It’s just not working.”

I fell apart that day. I surrendered to the fact that our lives are just going to be a bit different from the norm. “Abbynormal,” I like to say. From that day on I became 100% committed to keeping Neal at home and bringing in creative folks – actors, musicians, writers – to join his world, until he was ready to be in ours. Gradually, inch by inch, Neal did, indeed, emerge from his cocoon as a glorious butterfly – but on his own schedule, not mine. Among many other things, now Neal can sit patiently and watch a butterfly float by without any need to “possess it.”

Through writing my memoir, Now I See the Moon, I was able realize that some things in life, as in nature, cannot be rushed. Luckily, the right teachers, the right programs, the right books, and the right methodologies always appeared just when I needed them most. Neal will always be my guide as to what he is ready for and when he’s ready for it. A caterpillar knows best when he is ready to break out of the cocoon and emerge as the graceful butterfly he was always capable of becoming.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – Will’s Angel

June 29, 2010 18 comments

We recently received the following e-mail and poem submission:
Two years ago my son had a very trying school year. It was riddled with setbacks and aggressive behaviors. This year was the opposite. He and his classmates were introduced to another new teacher but his year was quite different. She inspired my words below, as I imagine the feelings through my son’s eyes. I wanted to share it with you.

Before we met, I walked a world,
Couldn’t see quite eye to eye,
My mind held back ten thousand words,
Like wind against the tide.

You found a way to speak to me,
You found your way inside,
You called me out to play with you,
You found me where I hide.

I like to do the things you ask,
I try so hard each day,
I like it when you smile at me,
It tells me I’m okay.

You teach me not to be afraid,
I watch you every day,
Your face says you are brave and kind,
And fear won’t win today.

You gave a gift I can’t repay,
You wrapped it gracefully,
My mom says you reached in your heart,
And gave me dignity.

I think that there are angels now,
But the right time it must be,
And I thank God for knowing this,
And for sending mine to me.

This “In Their Own Words” poem was written by Julie Jones, a mother who has a son with autism.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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