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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 – 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 – 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 – 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: Ignorance is Not Bliss

January 28, 2010 7 comments

As the parent of two children who have autism, I have been their shield and their sword since birth. I protect them from outside influences, which affect their routines and trigger their sensory issues; I fight for services at school; I pay for necessary and expensive medications and therapy and I have totally changed my own lifestyle to accommodate their needs.

The problem is that I don’t know how far to go with all of this.

At some point, my teenage daughter is going to have to face the world without my sword and shield. She’s 14. That’s a far cry from being an adult, but I keep asking myself what I can do now to help her transition into an independent person by the time she goes to college.

How far do I push her and when do I let her fail so that she can learn how to pick up her own pieces?

My daughter has difficulty reading social clues and she takes everything at face value. There is only black and white in her world, no shades of gray.

In other words, she’s “clueless,” which has its advantages for now.

Jessie doesn’t pick up on spoken innuendos and teen body language. If someone said “He’s hot,” she might think the guy had a fever. (Really, I’m serious …)

If I mention boys to Jessie, she adamantly insists that she’s never dating, never getting married and never having kids. She simply cannot envision a future in which she will change her mind on these issues.

As a teen who has autism, Jessie’s physical development is on par with her age, but light years ahead of her social development. Believe me when I say that guys around her see it, even if she doesn’t.

In the back of my mind I keep thinking about the movie Harper Valley PTA, in which the somewhat mousy/shy teenager gets her braces off, gets a new hairstyle and suddenly everyone sees her as “grown up.” Jessie’s almost there. Her early teen acne is clearing up, she just got her braces off and she’s tall and very athletic for her age. Yet, she’s totally clueless and totally dependent on us to make the right choices for her.

I literally have to force Jessie to participate in activities outside our home. She loves soccer, but hates activities with her teammates outside of regular practice and games. The same applies to school and church. Daily and weekly routines such as Sunday school and Wednesday night youth activities are fine, but field trips and special youth activities are outside Jessie’s routine.

This weekend I practically had to force Jessie to pack her bags for the youth lock-in. I will say that I was very proud of her when she explained why she did not want to go: “I feel alone there,” she said.

I could have cried, because I know exactly how she feels, and her comments made me question whether I was making the right choice for her. I did not back down, however, despite the fact that my husband kept telling me not to force Jessie to do something she does not want to do.

This was too important and it was a great opportunity for Jessie to try to socialize in a very protective atmosphere. We have a wonderful church and great youth group and I know Jessie is in good hands when she’s there.

And yes, in the end, Jessie had a really good time. She made a couple of friends and for the third year in a row, she stayed all night, after swearing that she would not.

Still, church activities are not enough. At some point, Jessie is going to have to learn to deal with society outside of the protections of home and church. She should be dealing with these issues at school, but we moved her to a small private school this fall, which was the best available option for her learning disabilities.

Our goal with school is to make sure that Jessie catches up with her peers so that she can go to college someday, even if she needs more time to get there. The drawback is that Jessie’s school is a small protected atmosphere where learning is key; everyone wears the same uniform and there is absolutely no exposure to the bad aspects of today’s society.

Ignorance is not bliss; it’s dangerous, and I am so afraid that Jessie will be unprepared for life in college and beyond.

So where do I go from here? How far do I push my autistic teen? How much do I continue to limit her exposure to outside influences? In other words, how do I prepare Jessie for life in a non-autistic world?

I wish I had answers to these questions, but I don’t, because when it comes to parenting a teen who has autism, I have only just begun. I enjoy posting about my past experiences with autism to help other parents while they are going through the same issues that I have already faced. This is one of the few times that I have written about the issues I am currently facing, to which I don’t yet have any answers.

And I feel like I’m back to walking on egg shells.

My life as a parent of children who have autism often results in taking one baby step forward and two big steps back. I’m afraid that, if I make the wrong decision with regard to my teenager, she will regress so far socially that I cannot bring her back.

But, I can’t be Jessie’s shield and sword forever. I have to find a way to push Jessie out into the “real” world a little at a time so that she can learn to stand and fall on her own.

This “In Their Own Words” essay is written by Nianya Cambridge.

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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