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In Their Own Words – Special

August 21, 2010 12 comments

This “In Their Own Words” is by Kimberly Cecero Brown of South Portland, Maine, who has a daughter with autism.

I feel I have always embraced people’s differences and, in fact, have been inspired and sought friendships with those who I perceive walk through life to a beat of a different drummer. I find those who think outside the box interesting and am always enthralled to listen to those who innately think different than myself.  That’s why I find it curious why I am struggling, at times, to celebrate Eme’s differences. It brings me shame the days I find myself quite traumatized to imagine our lives if Eme’s autism becomes severe, if she never recovers to a point where she could be among typical peers in the classroom and at social gatherings, if she is never accepted into the world of her peers.

At this point in time, with Eme being so young, we do not yet know if her autism will be considered mild or severe.  We have no idea what her or our family’s future holds. Yes, this is true for everyone.  No one knows what will happen.  But if you are the parent of a very young child with autism, you don’t know if you’ll be dropping your child off at a normal school or if she’ll be at a special school at six years old still trying to learn to speak, to complete a simple task children many years younger could do, if she’ll be flailing on the floor like a hooked shark on a boat deck just because she can’t do what she wants. It is terrifying.  This is why it is so important that parents of children with autism stay present in each day.  To discipline their emotional selves to not think of the future.  To do your best, and love your most, every single day without expectations for tomorrow.  It sounds like an empowering philosophy, but very difficult to master.  I struggle every day to stay present.

I am a stay-at-home mom, and on the worst of days when there is no escape from the reality, I can’t help but think, “How am I going to keep this up?  How am I going to deal with this autism thing for my whole life. I can’t do this.  It’s killing me.  My heart is being repeatedly ripped out of my chest, put back in, and ripped out again.”

Rationally, I know this stream of consciousness is a complete failure of any sort of coping mechanism.  It’s not coping at all.  And I wish I can snap my fingers and come out of it during those times and think positive thoughts and not think of the future. But when you’re in “it,” it’s like being stuck in the middle of a sopping bog, your wellies emerged deep into the mud up to your knee caps. You feel stuck and when you finally find the strength to lift your boot out of the muck, you have to step in more of it to get across.

So when I go on some autism sites and see this celebration of autism and how beautiful it is that our children are “different,” I feel conflicted.  Now that is a philosophy I’ve held onto steadfastly the majority of my life, celebrating “differences”, so why do I digest it all with a tad of reflux?  On emotionally horrible days for me, I think it’s all a bunch of hogwash, a facade developed to keep parents sane and to brainwash us to think we’re special because our kids are so special. To keep us all from running out of our houses, screaming our heads off in frustration, anger and sadness at the lot our children have been given.  I almost want to sarcastically laugh that someone like me is pleading that I don’t want my kid to be celebrated as “different”, that I want my kid to be ho hum “normal” (typical).

And I suppose the shame comes in, because not am I only thinking these things, but I keep these thoughts secret.  Like if I was to say them aloud, even in a room alone, it makes me a bad mother who is ungrateful for being given the beautiful gift of a child with autism.

And then a paranormal force lifts me from the muck and back to solid ground,  and I feel a sudden embrace around the bottom of my legs.  I look down to see two sparkling blue eyes peering up, emitting intense love and admiration for me, tiny arms hugging my knees with enthusiastic might. There is my Eme, my Golden Soul, and yes, she is special.  And not special, aka autistic, but a small little being beyond extraordinary.  A little girl, despite her diagnosis, who has found a way to embrace and express such pure love, without the need to use spoken language to do so.  She can speak volumes with her eyes and you can sense the presence of a venerable and significant soul through her stare.  A joyful child who wants to fly to the sky to convey her authentic happiness when it overcomes her. I am blessed and I am grateful. I feel honored to be her mother.  I feel that no scale of autism severity can define my little girl, for she is a gift, no matter her progress, and has so much to give to this world. I celebrate our Eme and her extraordinary self.  With or without autism, she is important in this world, especially my world.

“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 – A Graduation Surprise

August 8, 2010 14 comments

This “In Their Own Words” essay is written by Tonya L. Jones of Detroit, Mich. She is the proud mother of  Joshua Jones, who has autism.

My son, Joshua, is six years old and has just really begun to communicate verbally within the last year or so. We went through such a long period of his repeating everything that I when he began to ask questions and tell me what he wanted for breakfast, I was astounded. Although Joshua was diagnosed only 3 1/2 years ago, this journey with autism already seems like an eternity. But, praise God, he is progressing extremely well and seems to surprise us almost daily with new accomplishments.

Joshua has been in an ASD preschool classroom for three years and during this last year, he began to spend more and more time in a regular ed kindergarten class at his school. He has the most amazing teachers and assistants who are more than patient with him, and I couldn’t be more thankful for all the time and effort they have invested in my son. As the school year came to a close, I was told that Joshua would be graduating with the kindergarten class and that there would be a ceremony and everything! I was just beside myself! My son would march in and graduate with his peers – WOW! I know it was kindergarten, but it was still an amazing accomplishment and his dad and I could not have been more proud.

On graduation day, my husband and I were sitting in the audience waiting for the ceremony to begin. I looked at the program and to my complete shock, there was my son’s name – Joshua was scheduled to lead the audience in “The Pledge of Allegiance!” I could not believe my eyes. I later found out that his teacher did not tell us because she wanted it to be a surprise. Well surprise was an understatement. I was completely stunned!

As the ceremony began, Joshua marched in with his classmates and when it was time for the pledge, he stood up in front of everyone, held the microphone and recited the pledge as we all repeated after him. Oh, what a miraculous moment! Just one short year ago, he could not speak a complete sentence and now he was leading dozens of people in reciting “The Pledge of Allegiance.” There are no words to describe the joy that still fills my heart every time I think about it.

I’m sure there will be many more proud moments we share with Joshua. I thank God continually for blessing us with such an amazing child. He is kind, loving and giving, and literally makes me smile every day.

I videotaped that portion of the ceremony and Joshua never gets tired to watching himself. That’s okay, though. I never get tired of watching him, either.

“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 – Stepping into the Light

August 3, 2010 42 comments

This “In Their Own Words” essay is written by Molly Keene, the mother of a son who has autism.

I am Molly, and yesterday I found out my son has autism spectrum disorder. The term “found out” is sort of ridiculous, because you go through months of evaluations for this sort of thing. But yesterday I found out, my husband and I said it to each other – “our son has autism” – and so I’m ready to step into the light.

My son has autism. And he’s amazing. And it’s hard, but it’ll be great. And great trumps hard any day in my book.

***

At the party, the other children surrounded the birthday boy, sweetly singing (and shouting, for the less musically adept) “Happy Birthday.”

There was pizza, and cake, and veggies with dip. Soda was in cups. I looked around for my son and found him, hand on a light switch.

Up.

Down.

Up.

Down.

Luckily, the lights were connected to nothing noticeable. But his hand caressed it and flicked it up and down, a ritual repeated many times daily. The front of his clothes were soaked from the water table at the children’s museum. As we gently moved him away from the lights, he melted down. Logic told us it was past his naptime, but inside of me, something whispered.

- Do you see? He’s not like them.

My husband looked over at me and asked what was wrong. I blinked and looked up, anywhere else.

- You’re afraid he will never have a party like this.

My eyes blinked back tears, and I stood with the baby and walked over to the window to regain my composure. I watched the wind rustle through the green leaves on the trees, and I grieved for myself. Not for the boy, who was happy as could be doing things his way.

It was me that needed to adjust, not him.

***

I came in from the garage after a much-needed day of shopping with a friend. A small head popped up over the sofa, and he ran to me, talking as best as he could.

- “Nggah! Raaah! Eye duh. Eye gah. Nuh! Nah! Ennah.” (or something like that)

Whatever he had to say, he was quite adamant about it, as he laid his head on my shoulder and gave my other shoulder three pats. He rested there for a minute, about like any young child. We walked into the living room, where Papa sat with the baby. My boy pulled me to the bookshelf, beginning the same thing we did a dozen times a day. I started handing him DVD cases, and he would push them back up until I got to the one he wanted. He would seize it and run off to sit and gaze at it happily. I smiled as the ritual was repeated. I knew that my kitchen cabinet held several DVD cases, and that in there, he would admire them like a photo album.

***

He was still awake.

I crept up the stairs and opened the door. A little hand pushed an empty bottle into mine. Again, a nightly ritual, as I went down and put a minute amount of milk in it. Back up the stairs I went, and laid down with him on his bed.

First he laid on my legs, using his blankets as a cushion. Then he moved up to lay next to me. I began to sing our nightly songs – “Good Night,” “Twinkle, Twinkle, Little Star,” and “Ollie is a Child of God.”

A small hand went up to my cheek and cupped it. And in that moment, life was perfect. Small fingers snaked into my hair and touched a few, tentatively. He whispered something and cooed at me. I had no idea what he was saying, as usual. But my heart translated for me.

- Mama, I love you. Mama, I know. Mama, I chose you and Papa before I ever came here. Mama, I am happy. Mama, I am perfect, just as I am.

My eyes filled with happy tears – another daily ritual. I finished the last song as on-key as I could, and he softly cheered, “Aaay.”

“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 – 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.

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