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In Their Own Words – Tea for Two

September 8, 2010 12 comments

This “In Their Own Words,” is written by Alysia Butler of Hopedale, Mass.

I’m sitting on the floor of our toy room watching my son.

He’s at our Fisher Price toy kitchen, pretending to turn on the water and wash his hands.

He fills up a cup from the pretend blender and hands it to me, pushing it towards my mouth so I’ll pretend to drink from it.

I take a sip, say “that was delicious!”, and hand it back to him.

With a smile, he pretends to wash the cup in the toy sink and puts it away.

He picks up the toy phone from its pretend cradle on top of the kitchen, and babbles into it (sounds vaguely like “Hello? Small cheese pizza with a side of garlic bread? Bye!)

I smile. He turns to me and laughs. He grabs a plate from inside the toy refrigerator, takes a spoon, and hands it to me. “Eat!”, he says.

I know enough to recognize what this all is now. This is pretend play.

But it’s not from my four year old.

It’s my 22 month old.

And it’s making me very sad.

My four year old never did this at 22 months. He didn’t do it at two years old, or even at three years old. Just now, after a year of special services through his school, are we seeing this type of pretend play.

I’m trying hard to stay in the moment – to sit and laugh and eat my pretend food like a good mother should. I should be celebrating the fact that my youngest is meeting all his milestones. He’s finally starting to talk in a way that doesn’t sound like he’s underwater. In almost every way, he’s right where he’s supposed to be.

But all I can do is think how different that has been for my 4 year old.

My 22 month old plays better, eats better, holds a spoon and fork and crayon better and sleeps better than my 4 year old. For goodness sake, they are only three pounds apart, even though two and a half years separate them. And it worries me. For both of them. What will happen when they are both older and the distance between their skills becomes more noticeable – more obvious – to the outside world and to each other?

I’m snapped out of my sadness by a sudden hug from my 22 month old. A real hug. A “thank you for playing with me Mom” hug. I hug back and ask for more pretend juice.

My four year old spots us playing and comes running into the room. “Can I have a tea party, too?”

I make room for him in front of the tiny pretend kitchen and he gets himself a cup. He asks his baby brother to pour him some juice from the pretend blender and they both pretend to have a drink. They giggle and I have to laugh too.

They are pretend playing together. And I realize that I have to stop comparing my kids. All three boys will do their own things in their own time. One may be reading chapter books at age six, one may be able to name every single Hot Wheels car in our house, and one may be able to sing along with Lady Gaga. It doesn’t matter how long it took my four year old to get to this tea party. Every milestone and every step, he’ll be a bit behind where he’s supposed to be. But he’s here now. That’s what my focus needs to be.

In my house, there can’t be any supposed to be anymore. Just where we are now.

Back to my tea party. Because my pretend tea is getting cold.

“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 – Mean People

September 2, 2010 304 comments

This “In Their Own Words” is by Jennifer C., whose three-year-old daughter, Sierra, was diagnosed with autism at 20 months. You can read more of her writing at http://fingerprintsofautism.blogspot.com/.

My family went out to eat last night at a restaurant here in town. We usually go to kid-friendly ones that are pretty noisy already. If any of you have an autistic child you know how they cannot control their volume very well. Sierra is very loud and she doesn’t speak that well yet either, but she talks all the time and she squeals a lot when she is having fun. She was happy and being silly, a far cry from a year ago when she didn’t talk and just cried and yelled when we took her out. We try to teach her how to use an inside voice when we are out, but she does it for a minute and goes right back to being loud.

There were two elderly women sitting across the aisle from us who were just horrified by Sierra; they held their ears and shot glances at us, like my child was throwing knives at them. I do usually apologize for her being loud and I did to the other tables closer to us, but they were being nice about it. It wasn’t a constant loudness; she was being very good – eating her food and just being silly because other people were playing with her and her baby sister. When we were done, my husband got up to pay the bill and that’s when one of the elderly women said to me, “Can you keep your kid quiet or does she have to screech like that?”

I almost choked on my french fry. I have never had someone be so mean about it. If she had actually took a minute to look at Sierra, she would have noticed that she doesn’t talk clearly in any way and that she uses sign language while she is “screeching,” as she put it. That might have been a clue that maybe my child makes noise like that because she does not know how to communicate properly yet! I just said in a very loud and mad tone, “She is autistic and she does not understand how to be quiet!” Then she just gave me a blank look and said, “Okay”.  I know she was a coward because she waited until my husband left the table to say it. I hope she was embarrassed. There was so much more I wanted to say but I just couldn’t get it out. I get so upset, then I start to cry and I didn’t want them to see me cry.

I think people are very judgmental about autistic children. They don’t look close enough to see that there might be something wrong with the child; all they see is an unruly child. If they walked in our shoes for one day, they would never be judgmental about another child and their family again. The next time you see a child crying by the gumball machines, it might not be that she is having a temper tantrum for candy; it could be my daughter crying because they changed what is in the machines. At the restaurant, she is crying because the chicken is stringy and she can’t eat stuff with strings hanging off. At the park, it’s because the other kids scare her. At the grocery store, it’s because we walked a different way through the store. Sierra very rarely cries because she can’t have a toy; she cries when her routine changes or when she has trouble communicating her needs, and she gets unruly when she is scared and or on uncommon ground. Imagine having to live life like that and you will think twice about being judgmental.

I love my daughter so much and I wish other people could see her through my eyes, how wonderful, loving, and smart she is, and how frustrated she gets trying to adapt in this world. It breaks my heart every day knowing that she will have to put up with mean people who don’t understand her and what autism is.

“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 – Matthew’s Talking Dream

September 1, 2010 19 comments

This “In Their Own Words” is by Debbie Simon Pacholder. She and her husband, Tom, have three children. Their six-year-old son, Matthew, has autism and is non-verbal.

I am home on a Saturday, in the kitchen, with all three kids buzzing about.  Allison and Shannon, our two-year-old twins, are teasing each other with their favorite bunnies.  Tom, my husband, watches them and laughs.  Matthew, our six-year-old, is at the refrigerator.  He touches the water dispenser with his finger, then suddenly turns to face me.  “Mom, can I please have a glass of water,” he asks, slowly and distinctly, carefully looking me in the eye.

Instinctively, I head toward the cabinet to get a cup.  Then, it hits me.  My son has spoken – and not just “no”or “yeahhh.”  My son has uttered a full sentence!  MY SON HAS UTTERED A FULL SENTENCE!

“YAY, Matthew!” I shout, flooded with happiness and relief.  He smiles sheepishly and accepts my hug. “Did you hear Matthew; DID YOU HEAR HIM?” I shriek.  “He just asked me for a glass of water!”  His voice is so full and beautiful. I think, this is what winning the lottery must feel like.

Tom is too surprised to form words, but the girls circle around Matthew and touch him, like he’s a rock star.  “Yay, Boy!” Allison sings.  “Matthew, talking!  Matthew, talking!” Shannon says, and flings her arms around him.  He smiles only slightly, but his deep blue eyes are alight with excitement.

Fast forward to the next day.  I’m at school, with all three kids.  I’m afraid.  Afraid Matthew will stop talking, that the day before was just an anomaly.  Yet, he’s speaking.  Words.  Phrases.  Sentences.  He’s had a breakthrough; he’s come out of it. I hold my breath.

“I strongly recommend you send all three kids here next year,” the director tells me, while they play nearby. She nods her head toward the twins.  “They’re doing incredibly well – and I see how much they have been able to help their brother.” She glances at Matthew, who’s playing with a toy truck, appropriately.

I’m about to answer, but something stops me.  A sound.  Click!  The safety gate to Matthew’s  room.  He’s up, and it’s 6:00 a.m.  Rudely, I’m jolted back to reality:  I’d been dreaming all along.

Not that I should have been surprised.  I’ve had this dream before, the Matthew’s Talking Dream. In the last one, we’re in a room with only a TV, and he tells me he wants to watch Frasier. Totally random. But this one is different; it mimics reality.

Matthew has put words together in real life three times. First, when he was two, at the Noah’s Ark pool – a water Disneyland for toddlers.  We’re at a birthday party. Matthew’s playing in the water, which churns like a hot tub, when it suddenly becomes still.  We whisk him out and head toward the pizza and birthday cake.  “Go back!” he shouts quickly.  We’re stunned.

Next,  Matthew’s four, and swimming.   His instructor, Gina, shows him how to dive in the water for the toy fish she leaves at the bottom of the pool.  She’s talking, and Matthew shifts his feet from one side to the other, impatiently.  “I got it!” he exclaims. Did I hear right?  I look at Gina for confirmation. “He said it,” she laughs.  Matthew looks in my direction, then focuses on the water, like it’s no big deal.

The next week, more instructions from Gina.  “I’ll do it!” Matthew says.  “I can’t believe it,” I shake my head.  “Clearly, he can talk.”  “Yep,” Gina smiles.  “He can.”

I look at Matthew.  “I’m on to you, buddy,” I tell him.  “Your secret is out.”  He pretends not to hear.

That was two years ago.  No phrases or sentences since.  Not even in the pool. I try not to be upset, but I just don’t get it. Hours and hours of swimming, ABA, OT, hippotherapy, oral motor therapy, reflex integration therapy, and still no more speech.  He’s way, way overdue, and I’ve told him as much.

Last week, we’re playing on his bed. He’s laughing and hugging me, like a typical six-year-old.  I remember what one of his therapists told us.  He knows how to do so, so many things.  He’s just choosing not to.

“Matthew, I know you can do it,” I whisper.  “You can talk to us.  I want you to talk to us. You know Allison and Shannon won’t let you stay quiet for much longer.  You’re going to have to make the decision to talk.  I hope it’s soon.”  He stares into my eyes, surprised. I stare back. He laughs – a deep giggle from his belly – then covers my mouth with both of his hands.  I move them away and hold them in mine. “Think about what I said,” I tell him.  “Goodnight … I love you.”

The next morning, he’s the first to wake up, and runs into our bedroom.  “Good morning sunshine,” I say, melodiously.  He looks at me and comes to my side of the bed.  “Mommm!”

It’s not a sentence, but it’s a start.

“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 – Does He Rule the House?

August 29, 2010 52 comments

This “In Their Own Words” is by Becki Becker, who has a 17-year-old son with autism. He was diagnosed at two and a half. You can read more of Becki’s writing on her blog, TheOtherSideofNormal.

I overheard a comment by a family member last weekend. He commented that Tony ruled the house – and that we all tip-toed around him.

It’s so true.

I didn’t realize how evident that was until last weekend.  It’s so “normal” for us that we don’t even notice it anymore.  But last weekend we were staying at my parents’ house and it really became apparent. Tony has certain “rules” that we’ve all just become accustomed to.  We’ve all adjusted because he can’t.  It’s not easy and it makes for a very tense environment sometimes.  Here’s what I noticed:  (keep in mind there is no explanation for any of these – they just are …)

Rule #1:  Do not yawn. Especially no yawning and talking at the same time.

Rule #2:  Do not have loud background noise.  That means TVs, radios, computers, vacuums, or hand mixers (can use, but need to alert him first).

Rule #3:  Do not sneeze and scream at the same time (some people do that without realizing it).

Rule #4:  Do not say “blah, blah, blah …”   while speaking.

Rule #5:  I need to see all your old photographs when I visit.

Rule #6:  I also need to take a mental inventory of all your DVDs, and any VHS movies you may have.

Rule #7:  I rule the TV. I will block the other channels while I’m here, but will unblock them before I go.

Rule #8:  No loud unexpected laughter. Please.

Rule #9:  Unlimited baths are expected.

Rule #10:  Friday night is pizza night. It must be gluten-free.

Rule #11:  I need to touch you on the chin and the head every time you yawn, sneeze, or sing.

Rule #12:  Keep things orderly and predictable. Please. I need to know the schedule.

Rule #13:  No deviations in the schedule. Please.

Rule #14:  Absolutely do not change your mind or give me more options.

There are so many other things I could add, so many that they don’t even seem odd to me anymore. To all those we’ve visited, I’m sorry.  I hope it doesn’t reflect as bad parenting.  It is what it is.  It’s part of his disorder — some of these rules come and go, some have been around for years.

What is the lesson here?  I’d appreciate any and all advice.  In the meantime, we will continue to follow the rules.  Because it keeps peace in our house.  And peace of mind is all we’re asking for …

“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 – One New Message

August 28, 2010 27 comments


This “In Their Own Words” is by Laura Traw, who has a son with autism.

Sometimes I have a hard time watching shows regarding autism. No matter how I prepare myself, I find myself either turning off or walking away for awhile, then always coming back. My thought process always seems to be, “I am living this life. It’s too painful to watch someone else go through it as well.”

When HBO aired “Temple Grandin” (great job, by the way), my husband and I (on the west coast) watched the east coast feed while my best friend, who is in Tampa, watched at the same time.  Periodically, we would text one another, something like this, “how r u holding up” Me: “so far so good”. Then, there is a point in the movie when the doctors told Temple’s mother that Temple needed to be institutionalized. I don’t remember the exact correspondence between the two but the message was all too clear. There was no cure, no hope.

Another text came through, “are you ok” No, I’m not.

I looked at my husband, tears streaming down my face. I felt like someone was standing on my chest; I couldn’t breathe and I could not stop this waterfall. What was happening to me?

“I can’t watch this,” I said, as I got up and started walking out the room.

He stood up and came over to me. I could barely make his face out, because my eyes were covered with tears. He hugged me, really hugged me – which was good because I felt like I was going to collapse.

I put my head in his chest and sobbed, “I just can’t.” Without hesitation he stopped the DVR, and said “It’s okay.”

It wasn’t “okay” – this is our life!

Maybe I’ll learn or see something that will help, that I can do, I’m thinking. Why was I feeling like this? I have to pull it together, I have to be strong for my son. How can I fight this battle if I can’t sit through a movie or a show about autism?

My phone vibrates, another text, “this is so good, what an amazing movie.”

Amazing? This isn’t amazing – nothing about any of this is amazing. I text back, “had to turn off, can’t watch.”

Does no one understand this? I know this is a great story and I know she has made such strides and is a voice of hope, reason and even understanding to this disorder.

What is wrong with me?

I am strong. I have been strong. I will, and have fought for my little guy and I dare anyone to tell me we can’t or he won’t be able to do something because of autism.

Why can’t I watch this movie?

I leave the room, utterly and completely defenseless of my own thoughts. I start doing laundry, anything to keep me busy. My husband comes in. I keep my head down, because I know I am going to start crying; I am weak.

I can’t be weak.

“I love you,” he says, standing in the doorway. I pour the laundry soap into the washing machine; I still can’t look up. “I love you, too,” I say, my voice quivering.

He sets my phone on the counter and there it is, telling me, “one new message.” I read it – “you are an amazing mom.”

That’s it, just that.

How is it that when I am so weak, my husband is so strong or although miles and miles apart, a best friend still knows just what to say?

I don’t know, but with that and about an hour to pull myself together, I sit on the couch with my husband holding hands. Sometimes I’m clinching.

We laughed, we cried and WE made it through the whole movie. It’s still hard for me to watch some things, but I am so thankful for these amazing people who open themselves and their lives up for the rest of us to see, hear, read and learn from. We are not alone, I am not alone.

It is because of such courageous people, my family, my husband and, yes, my best friend that I, too, have opened up about this journey.

These are raw emotions, me, us, our son. There are some moments when I feel like I just can’t make it one more minute. Then there are moments like the other day when I pointed to the color red and my son said, “RED.” Or last week when we were at the beach and he could not get dirty enough. We didn’t have to spend hours wiping every piece of sand off of him, or wash his hands numerous times to make sure there was no more dirt. A big day for us!

My heart hurts. I get angry and yes, sad. I am strong, but sometimes I feel defeated. I cry alone, because I don’t want anyone to see my tears. But, I open myself up because I know that I have a great family, wonderful friends, a husband that I adore, a son that is the love of my life; and yes, I am an amazing mom!

“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 – Imagination

August 27, 2010 21 comments

This “In Their Own Words” is by Robin Alvarado, who has two children; her younger son has autism.

My three-year-old son was diagnosed with autism in November, 2009. Since then, he has been enrolled in special education preschool, therapies, etc., He was also classified as high-functioning. I must say my son has really come a long way these past eight months.

Although my six-year-old daughter is still young, and knows that her little brother is different than she is, she still views him as just that – her little brother. She is so compassionate with him, as if she is a little mommy. She loves to take care of him and is such a big helper to me.

She will also force him to play with her and interact with her. Not in a mean way, but in a way where he really has no other choice but to pay attention to her. I’m not sure that she understands why it is so difficult, but she still pushes him. Sometimes it will be overwhelming for him and I have to tell her to give him a minute to calm down, or that he needs a break. But she is so persistent. I’m not certain that she even realizes what she’s doing but I believe it is really good for him.

Last week, I was sitting in the living room watching TV and both my son and daughter came in the living room, dressed up in play clothes I have for her. She then introduced them as a prince and princess. I noticed that my son face looked as if he was having fun. He was smiling ear-to-ear. They then went back to her room. A few minutes later, they both walked in pretending they were ninjas. Believe it or not, my son was punching kicking the air, and making sound effects to go with the punches and kicks. He was doing imaginary play. That was huge for me to see. He has never done anything of the sort. EVER!!

I really believe that my daughter forcing him out of his comfort zone is doing him a world of good. If she can get him to participate in imaginary play, what else will she be able to get him to do? Thank God for my daughter.

“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 – The Club that Saved My Son

August 23, 2010 7 comments

This “In Their Own Words” is by Ileana Morales, who has a teenage son with autism.

I have a 17-year-old boy named David who has autism. David, up until the age of 10, knew very few words such as mama, papa, and toy (I know, all kids’ favorite word). At the age of 11 he became high-functioning; he would not stop talking and we couldn’t be happier. He was no longer shy; he could actually look you straight in the eye and tell you what he wanted, which he never did before. He started doing great in school and at home, but when he turned 16 (and the hormones kicked in) everything changed dramatically and not for the better.

He was desperate for friends, he wanted a girlfriend and when he gets something in his head of what he wants, he will not drop the subject. He was growing more and more frustrated. He started trying harder to make friends at school, but little by little he came to realize that he was different. He was treated differently and that the girls just wouldn’t give him the same attention that they would to another teenager.

He started getting more aggressive every day; David went from my sweet little boy to an aggressive teenager. Things were getting out of hand; I didn’t know what to do or say because anything would cause an outburst. I didn’t know who to turn to, either. The treatments weren’t helping and I didn’t want to result to treatment with drugs. He even started hurting himself with any object he could find, biting himself really hard or smacking his head repeatedly, causing him a terrible migraine. He would kick and punch doors, and throw things all over the house. He would cry to me saying, “Mom, please help me. I have no friends. I’ll never have a girlfriend; I’m a disgrace.” That would just rip me apart inside – he was frustrated and so was I.

I enrolled him in the Best Buddies program at school, but after every outing, he would come home more depressed and tell me that the regular kids didn’t want to talk to him (which honestly defeats the whole purpose of the program). One day, I started talking to the mother of one of David’s classmates, Rosa, and we decided to start a club.

It all began when Rosa threw a Sweet Sixteen party for her daughter, and all the kids were so happy all week – planning on what to wear, how to dance which the teachers at school showed them how to do. David didn’t have one outburst all week, which was a miracle for us, and they ended up having a blast at the party. The following Friday, I picked up seven of David’s high-functioning friends in my van with the other mother, Rosa, and we went to “hang out” at the movies “like the regular kids”(in the words of my son). This was the first time they had ever gone to the movies with friends and they would not stop laughing and talking, just being the teenagers that they so desperately craved to be. Rosa and I came out of the theater bawling our eyes out; we just felt so relieved to be able to do that for them.

Now we go out every Friday. I have the kids calling me all week to see where we’re going and what time I’ll be there to pick them up. David and his friends are no longer the aggressive teenagers they once were, because they’re too busy planning their Friday night outings and it makes me proud to be a part of that.

There needs to be more programs like this out there. Yes, there’s physical and speech therapy for them when they’re adolescents, but what about their social skills, their happiness? Our teens with autism need help; they get lonely, they want attention and they want friends. It’s our human nature to want to be accepted in society. If they suffer, so do we.

I wanted to share this story with every mother going through what I went through. Our little club is working and all of us together can make it grow, where every teen with autism can be a part of it.

“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 – 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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