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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 – 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 – The Prom that Almost Wasn’t

July 2, 2010 21 comments

This “In Their Own Words” was submitted by Cynthia Drucker, whose son has autism.

Brandon, who is now 19 years old, went to his senior prom, but it almost didn’t happen. I wrote the following (edited for content) and e-mailed it to news stations. Minutes later, I received a call from one of those stations.

Brandon, age 18, graduates with a special diploma from high  school this year. He has made many friends in this school. Brandon enjoys making new friends and staying in touch with them on the phone. He was excited to purchase the yearbook to have the friends sign it. Brandon neglected to attend a class he was scheduled to be in. He “skipped” class. He was looking for more friends to sign his yearbook. He can not tell time. He doesn’t understand the passage of time. The principal suspended Brandon for two days because of this action, as well as prohibiting him from attending his senior prom, which is just two days away. Her claim is “if he can’t be trusted to be where he is supposed to be, then how can we trust him to remain in the designated area of the prom?”

I pleaded with the principal to allow Brandon to go to senior prom. My pleas went unnoticed. Feeling it was hopeless, I cancelled Brandon’s tux rental. I don’t know if it was family outreach, prayer requests, local news stations, or numerous e-mails to newspapers that made a difference. But moments later I received a call from the principal. She said that it had been arranged for Brandon to attend the prom with a teacher escort. His  personal chaperone would be with him at all times. The news stations cancelled their story, since it had a happy ending.

Brandon attended his senior prom, dateless, and he had the best time!

“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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