Category Archives: Tips from the Trenches

Executive Compromise

A short conversation with Nigel last night –

Me: Nigel, you really need to clean up your room. I can’t even see the floor in there.

Nigel: The floor is purposeless.

Me: No, it is not ‘purposeless.’ The floor is for walking on to get across the room.

Nigel: Walking is purposeless.

Me: You’re not making sense. Of course walking has a purpose.

Nigel: Well, it’s too hard to clean my room.

And so, the room-cleaning saga continues. Some of you may recall the ideas I came up with in the past to address this issue, such as listing specific steps to clean the room, making chore charts, using positive and negative reinforcement, and trying to inject humor into the situation. All of those things worked a few times; none of them work now. With five full inches of trash, clothing, books, DVDs, papers, and Lego strewn across his entire floor, I had to dig deeper to come up with a solution.

I remembered Mama Mara’s post from a few months ago discussing the concept of executive control and her son’s room, and I used that to fuel my search. I searched for more about executive control/function, and specifically, cleaning up rooms. I found a video on Autism Children Now that was quite helpful. The subject, a woman with Asperger’s, discusses the fact that ASD individuals have a different perception of what is organized. It reminded me of the following exchange I overheard between Nigel and Aidan a few years ago:

Aidan: You’re using my toothbrush, Nigel! Mine’s the one with the stickers on it.

Nigel: Sorry, my brain is not good with memorizing things like that.

Aidan: That’s because you’re not organized!

The Aspergian woman in the video maintained that when it appears that autistic people’s living areas are disorganized, the spaces aren’t disorganized to them. They know where everything is. And while I am sure that this is true in many cases, unfortunately it’s not with Nigel. He doesn’t know where everything is. Things get lost in his room, swallowed up. Last weekend he had an overnight Scout camping trip, and while packing he could not find his flashlight, compass, Swiss Army knife, or even any socks, all of which were buried. We had to go out and buy these things at the last minute, which did not make me happy. I could dock his allowance for these items, but that really doesn’t help him to learn how to be more organized.

What to do? The woman in the video made an important point: compromise is the key word. Compromise on organization, and do not be abstract in your instructions. I can’t just say, “Nigel, you need to organize your room better.” What I can do is compromise on the things that I want him to have organized. For example, I can have him agree to the following:

  • Daily trash pick-up, every evening at the same time
  • Socks go directly in laundry bin when taken off
  • Scout items or other easily lost items put in a designated spot

I would love to have him clean his room thoroughly every week, but I know this is not possible for him. I would love to have all of his clothes in his dresser, closet, or in the laundry instead of on the floor, the books and DVDs on the actual shelves that are set up for them, the papers in stacks or files, and everything organized the way the rest of my house is. But there’s no compromise in that. With the 3-step list, he won’t feel overwhelmed, and I don’t have to hear “I don’t have any socks” or “I can’t find my flashlight/compass/scissors/wallet” anymore. And, if I’m really lucky, I won’t have to wade through five inches of trash to tuck him in bed every night.

5 Ways to Feel Positive

Lately I find myself vacillating between extremes of emotion – either blissfully happy or sobbing without reason. Infinitely patient or agitated beyond control. Supremely confident or a bundle of nerves. They’re not so much mood swings as what I call “outlook swings.”

Two weeks ago, I was on top of the world, and not because of any tangible thing. I was filled with a sense of gratitude for every aspect of my life – giddy, almost. It was like I was high on gratitude, just for living. It was nice, but it was also unnatural. It was an extreme positive outlook – so extreme that it had to swing back the other way. My sadness last week came on me like a truck. Granted, I had a lot on my plate with being nervous about Nigel going back to regular school and Aidan’s mystery ailment. But I allowed that anxiety to infect other areas of my life that I needn’t have, like my self-esteem. I suddenly found myself way more negative than I am ever comfortable being. It was the other extreme. Fortunately it subsided with a phone call to a friend.

So how else do we deal with the unavoidable weepy bug? How can we regain our positive outlook when we feel like we have to take on the world (or that the world is taking us on)? My outlook swings have finally normalized (for the time being), and I think it’s because I did all of these things:

  • I realized that the kids are all right. Yes, one is adjusting to an environment that used to be very difficult for him, but at this moment he is happily watching Winnie the Pooh in his room. And yes, the other one has some unknown health issues that I’m very worried about, but at this moment he is not in pain and he is listening to Bob Marley in his room. These boys are my world. And as long as they’re okay, I can handle whatever is thrown at me.
  • I’ve got a job and a home and good health. Yes, this smacks of being told to be thankful for your dinner because there are kids starving in other parts of the world, but sometimes I have to remind myself that my life could be worse.
  • I let myself be sad for awhile. There IS a reason for it, even if I can’t see it. And even though my life “could be worse,” sometimes it’s tough enough to warrant a few frustrated tears.  And everyone always has a right to feel the way they do. So if you’re sad, own it. You do have a reason, and it is valid.
  • I called a friend. Let me say that again, because it’s not something I normally do. I called a friend. Usually I’m a go-it-alone person. I often have to force myself to ask for help. I don’t know why; it’s just the way I am. Maybe because I’ve been on my own for so long, I’ve had to be that way, even when the chips were down. But not this time. I felt the need to talk it out, and it helped immensely.
  • I recited affirmations. Nigel is calm and comfortable at school. Aidan’s body is healing. I am working toward my goals. My life is right on schedule. I enjoy life. I am where I am supposed to be.* I recite these in my mind throughout my day, and before I go to sleep. It’s also helpful to write them on Post-It notes and stick them around the house where you will see them periodically (bathroom mirror, refrigerator, wine rack).

*Note: Affirmations are generally not as effective when you’re in the middle of a crying jag.

Escaping a Meltdown

Walking with DinosaursWhen Nigel was younger, most of his meltdowns occurred due to sensory overload, usually from noise. I couldn’t take him into grocery stores, restaurants, pumpkin festivals. We stayed home a lot as a way to avoid potential meltdowns. Then there were the meltdowns that occurred as a result of his frustration with not being able to communicate, which happened anywhere, especially at home. So we used PECS and visual schedules to try to avoid those meltdowns. I never succeeded in eliminating them, of course, but it was a desperate game that I played, trying to anticipate a meltdown and evading it any way I could.

Now that he is older, and can successfully use ear plugs, I rarely worry about meltdowns due to noise. We frequent grocery stores, restaurants, and a festival now and then. We don’t need to stay home as much, and that is liberating. Nigel is also now verbal, has been for several years, so we no longer use PECS to communicate, and he doesn’t have meltdowns due to communication problems (except when he was mainstreamed in public school). But there’s another type of meltdown.

Sometimes, having the emotional age of an eight-year-old, Nigel has a meltdown when he can’t have something he wants. And there is usually a build-up, either by someone (often his younger brother) antagonizing him, or by me letting him have other things that he wants and then cutting him off. Last week he kept upping the ante, first asking for restaurant pizza, then ice cream for dessert, then buying a movie that he had to have. Feeling like a neglectful parent due to NaNoWriMo, I let him have those things. Then the next day, he went for a walk in the neighborhood, wearing his watch so that he would come home at the stated time. Ten minutes later, he came bursting through the front door, panting, saying that some people down the street were giving away free kittens. And he wanted to go back and get one.

Yes, yes, I know – you can never have too many cats. I love them, I do. We have two wonderful cats. But with two kids, two cats, two jobs, and a house on my plate, I do not need another pet right now. And I want Nigel to learn that getting a pet is not something about which to be impulsive. So I gently told him no and explained my reasoning. I felt a switch turn on.

Nigel went into meltdown mode. He was in my office and that would not do. I tried to guide him out but he would not budge. I shut off the lights and said, “Let’s discuss this while I make dinner,” and he followed me to the kitchen. When he realized that I was not going to back down, he began shouting, “Communist! I’m going to report you to PETA!” and grabbed a knife out of the drawer. I took it from him before he even started to do anything with it, then he ran to his room and grabbed a screwdriver and held it to his jugular. This was quickly turning scary, in spite of the PETA remark.

I grabbed the screwdriver out of his hand and walked through the living room. Aidan, who had spent the night at a friend’s house the night before, was napping on the couch. And there was something playing on the TV. Something Nigel hadn’t seen in a long time: Walking with Dinosaurs. Nigel stopped following me and fixed his attention on the TV. I rounded the corner and slowly peered back around it, realizing that Nigel had been distracted. I hid the screwdriver and snuck back to my office, knowing that if I made dinner and tried to serve him now, he would refuse to eat and would probably resume his tirade.

I waited half an hour while Nigel watched Walking with Dinosaurs, feeling triumphant that I had escaped a worse meltdown. Saved by a DVD. Sometimes he has persevered in his self-injury, sometimes he has run out the front door and I’ve had to wrestle with him to get him to come back in, sometimes he has threatened me, often he has broken things. Meltdowns get scarier as our kids get older and bigger.  We have all learned ways of attempting to avoid them, or to cut them off at the pass once they begin. When they do, here is what (sometimes) works in our house (when I’m lucky):

  • Removal from the room in which the meltdown originated
  • Parent remaining calm but in control
  • Distraction: Turn on music or the TV
  • Sufficient time for a calming period

How to Motivate an Autistic Teen

The title of this post is one of the more common search phrases people use to find this website. And since it’s a topic that I deal with on a daily basis, I decided to describe my approach.

Motivation is either extrinsic (“coming from without”) or intrinsic (“coming from within”).  Both involve what the person in question perceives as rewards, either tangible (extrinsic motivation) or intangible (intrinsic motivation). Depending on your child’s emotional age, they will start off with extrinsic motivation and, as they mature, they will start responding to intrinsic motivation. It’s just been in the past year or two that I’ve been able to cultivate Nigel’s intrinsic motivation, but he still relies heavily on extrinsic.

*Extrinsic Motivation (Tangible Rewards):

A. Time doing what they love:

  • Watching movies/videos
  • Playing video games
  • Computer time
  • Going to a favorite museum or other place of interest
  • Bike-riding, hiking, or other physical activity they enjoy
  • Go-karting, bowling, or other activity
  •  Going to the library
  • Inviting a friend for a sleepover

B. Things they can earn:

  • Allowance
  • Buying a new book, toy, or model to put together
  • Renting a video game or DVD

C. Consequences (the other side of the reward coin):

If they don’t do what they need to be motivated to do, **they lose time allotted for doing what they enjoy, and/or they lose the privilege of earning things that they want.

Intrinsic Motivation (Intangible Rewards):

A. Personal Achievement:

  • Finding things that were lost (e.g. during room cleaning – this is also an extrinsic reward)
  • Contributing to the family/household

B. Helping People:

  • Habitat for Humanity Walk
  • Scouting for Food

Nigel is learning the rewards of intrinsic motivation by being involved in the aforementioned causes. I also use one of his regular chores, cleaning out the cat litter, as an intrinsic motivator: he is helping someone who can’t do something themselves and in doing so, gains their love and loyalty. He is also contributing to the family and household by helping out, and he is learning that a sense of community is its own reward.

**Example of losing time allotted for doing what they enjoy:

Nigel has a hard time getting up in the morning. I offer him the extrinsic motivation of warmth, either through a warm blanket (fresh out of the dryer) to wrap himself in, or a warm breakfast or drink. If that is not motivating enough, for every 5 minutes that he continues to stay in bed, I deduct 10 minutes off of his computer time for the day. As far as intrinsic motivation, I could tell him that getting out of bed on time would yield the satisfaction of a productive day. But he’s definitely not there yet on that one.

*Remember: The only way that extrinsic motivation will work is to follow through with both rewards and consequences. Consistency is key!

Note: When Nigel was younger and non-verbal, I used a system of visual cues to help schedule and motivate him. Holly at Fearless Females has written a post outlining the visual system she uses with her non-verbal autistic daughter that helps to motivate her to do things. It’s a great “companion” post to this one.

3 Steps to Ending Chore Wars

As the eldest of four children, I had a lot of household chores and responsibilities while growing up. I didn’t like it, of course, but I did what was expected of me. I had read stories about kids growing up in the country having many more chores than I, so I figured my lot wasn’t so bad.

Nigel sees it differently. He balks at the few chores I have him do, complaining about slave labor and communism. “Cleaning rooms is for nerds,” he says. Cajoling, begging, and trying to reason with him (“Everyone has responsibilities,” I say) is usually unsuccessful. So I came up with a plan:

1) Create a chart – a visible reference, like the schedules used in his early intervention classes. It lists what he does when, each day. It has spaces for star stickers or checkmarks to indicate when chores are completed.

2) Offer rewards – positive reinforcement for completing chores. He’s a teen, so it has to be something that will really motivate him. Two things he loves the most: renting movies and having friends spend the night. So when he receives a certain number of star stickers, he can rent a movie or have a sleepover.

3) Withdraw privileges – negative consequences for not completing chores. Two things he would miss: watching movies in his room every day and having computer time. For each day a chore is not completed, he will lose time doing what he enjoys.

This is an experiment – I’ll report back with how it goes! Unlike communism, I think it will work.

5 Best Comeback Lines for Comments or Stares

We’ve all had the experience, especially those of us who’ve been in the autism trenches a while, of dealing with unsolicited comments and stares regarding our children’s behavior. It’s hard to believe that people could be this hateful with all the struggles we go through as a family, but It comes with the territory. Sometimes others’ reactions are minor enough to let them roll off our backs; other times they’re so caustic that we cry over it later. And it’s later that we always think about what we should have said to those people, or what we wish we had said, or thought to say. Sometimes the situation is so bad that you can’t come up with anything except “I’m sorry for the disturbance. My child has autism.” That’s what I’ve resorted to many times, feeling exhausted and defeated, ready to start screaming myself.

Well, no more! I’ve decided that unless my son’s behavior is harming someone or damaging property, I am not apologizing any more! Yeah, right. Easier said than done. But instead of leaving a situation wishing I had thought up a witty retort, I’m doing it now. Here, then, are the five best comeback lines for unsolicited comments, stares, or “advice.” This is just a start! Please, feel free to add to the list. I need all the help I can get!

5. “Got autism?” (I admit – I saw this on a T-shirt.)

4. “What? You’ve never seen autism before?”

3. “We didn’t have a social story for this.”

2. “This is Teen Autism coming to you live from ______ ! [insert name of location of incident]”

Okay, here it is . . . the Number 1 Comeback Line for Stares and Comments  . . . wait for it . . .

1. “Too bad Michael Savage isn’t here. He’d know what to do!”

*UPDATE Oct.’08: You can also now substitute Denis Leary for Michael Savage! Even better!

Single Parenting with Autism

Even though recent reports put the divorce rate down to its lowest since 1970, I had read various quotes that the divorce rate when autism is involved is as high as 80%. I took a look around online and found a source which puts the rate at 85-90%! Scary and sad. Personally, I don’t believe that having an autistic child led my ex-husband and me to seek a divorce; there were plenty of other factors involved. But the fact remains that ten months out of the year, I am a sole parent (by that I mean that the other parent is only available by phone). And judging by the statistics, there are many other single autism parents out there as well. How do we do it?

The quick answer to that question is support. But there are several other elements that contribute to the successful single parenting of an autistic child. This is what I have learned:

1) You must have emotional support. Look first to your child’s other parent. A half-and-half joint custody arrangement may be too difficult for your autistic child to process, so be creative in your approach. But do try to plan for your child(ren) to spend some time with both parents each week so that the custodial parent can get a break and the non-custodial parent can spend some time with the child(ren). Do whatever you can to quickly get past any negativity with your ex-spouse. Not only will this be better for your child(ren), it will make things so much easier for you.  In the event that your ex-spouse lives far away or for other reasons cannot or will not be involved, you need other sources of support. Look to relatives and friends, and if you are truly isolated, you may want to consider relocating closer to those who can help you. If that’s not possible, look up respite care in your area.

2) You need time for yourself. This is why respite care is important if you do not have an ex-spouse or family and friends nearby. Giving yourself a break will help you to recharge and ultimately be a better parent. My time to rest and recharge is during the summer, when my sons are visiting their father in Los Angeles for seven weeks. Of course, I would rather have that broken up into smaller increments at more frequent times throughout the year, but it’s not possible. So, during the other ten months of the year, once in a while I have a family member or a friend from Nigel’s Scout troop watch him, Aidan goes to a friend’s house, and I take a much-needed break.

3) Try to organize your life. It really helps to get through the day, and the week, if your therapy appointments and errands are noted in one place, your keys and wallet/purse are always kept in the same place, and you schedule certain household tasks on certain days of the week. I plan out meals a week in advance and do my grocery shopping once a week. I started doing this about a year ago, and it makes that element of running a household so much easier, plus it’s healthier and it saves money. Two great sources for helping you to organize your life are The Simple Dollar and Real Simple Magazine.

4) Exercise when you can. This doesn’t mean you have to go to the gym, unless that’s the only thing that works for you and you have the means to do so. If your child can handle a walk around the block, get out and do that. If not, try doing yoga at home, and try getting your child(ren) to do it with you. Exercise is important not just for the physical health reasons, but also for emotional and mental health. It’s essential for stress release, something all autism parents need.

5) Cultivate (or develop) creative interests. Writing saves my sanity and helps me retain my sense of self. Anyone can benefit from having a creative pursuit, but for single parents, that outlet can become a lifeline of sorts. The best thing to do is to come up with something you can do at home, either with your child(ren) or while they are otherwise occupied (watching a video, for example). If you love to cook or bake, throw yourself into it: research recipes, try out new ones, or develop your own. Try getting into painting or drawing, photography, needlework or other craftwork, sewing, woodwork, designing, music, poetry, plants, gardening, computer programming, or anything you might be passionate about. It’s good for the soul, and it reminds you that there is more to your life than day-to-day life.

7 Dietary Changes to Try

It can be extremely difficult to regulate your autistic child’s diet. I know that song and dance all too well. But it is something we parents must attempt. Diet – what we put into our bodies – affects our health even more than most of us realize, and this is certainly true for autistic individuals, as evidenced by the success of the GF/CF diet. But since we did not have a successful experience with that, I have modified Nigel’s diet over the years to one that seems to work the best for him. Following are seven suggestions for diet modification:

1) Try the GF/CF diet. It might benefit your child. Be sure to maintain consistency with it for several weeks to accurately gauge its effectiveness.

2) Limit sweeteners, especially artificial ones. Nigel is okay with the occasional bit of natural sugar that crosses his path, even a little corn syrup now and then, but he absolutely cannot have any artificial sweeteners. He becomes completely agitated and unmanageable, reverts to echolalia, and general chaos ensues. That means mainstream sodas (Coke, Pepsi, etc.) are out, but once in a while I allow him to have some even though I regret it later. He is particularly sensitive to Aspartame, which I’ve read many bad things about on the internet.

3) Limit other chemicals: artificial colors, flavors, and preservatives. I’ve read that the Red No.-whatever colors are the worst, but the rest can’t be far behind. We frequent the natural foods section of various grocery stores and buy all of our cereals and snacks there. No Trix or rainbow-colored goldfish crackers!

4) Try organic food. Yes, there’s been a lot of debate about if it’s worth the extra cost or if the money’s all in the organic labeling. That may be true in some cases, but know this: In the past two years since I started buying organic food, and not everything – just about one-third of the food we consume is organic – I have only been sick once and it was extremely mild. Both of my sons have only been sick twice. Twice, in two whole years! And those were also mild illnesses. For kids, that’s pretty amazing. I am sold on organic foods no matter what I read or what anyone says. They are so much better for your health. They automatically exclude artificial colors, flavors, sweeteners, and preservatives. And pesticides! And they taste far better, too.  I think I’ll write a whole post about organic food.

5) Push fruit. Fruit aids the digestive system and is full of vitamins. Of course, consuming vegetables is just as important, but if your child balks at most vegetables (like mine), you may have better luck with fruit since it is sweeter.

6) Encourage water consumption. This will be very difficult if your child acts like water is poison. My younger son used to fall into that category. I was able to get him to drink more water by bargaining with him with what he wanted: If you drink half a glass of water, then you can have a glass of lemonade.

7) Limit meat consumption. Meat is more difficult to digest, so I cook with smaller amounts and on fewer days of the week. You don’t have to cut something out completely to see the benefits of scaling back.

What to Do If Your Child Is Being Bullied

This is the first post in a new category called Tips from the Trenches. I’ll try making lists like these of various topics on a regular basis to contribute to that category.

1. Communicate with your child. Often kids will not elect to tell parents about bullying, for whatever reason. Nigel said he didn’t want me to worry, so he didn’t tell me until I started noticing his classic stress symptoms: bald spots from pulling out his own hair and badly chapped lips and mouth area. Pick up on any non-verbal cues your child has to indicate stress and then ask them if someone has been bothering them. Sometimes you have to drag it out of them, as I did with Nigel.

2. Remind your child how smart he/she is and how much you love him/her. Bolster his/her self-esteem as much as you can. Assure your child that you’ll do everything you can to get the bullying to stop.

3. Contact your child’s teacher(s). Diplomatically state what is happening and offer any suggestions you may have for stopping it.

4. Within a week check in with your child to see if there are any changes in the situation. Check in with the teacher(s) to see what has been done and report to them what your child has indicated about the situation now.

5. If the situation has not improved within two weeks, contact the dean or principal. It is a good idea to be familiar with them anyway, because they need to know all of their special needs kids, and they like to be aware of how involved you are as a parent.

6. Keep tabs on the situation. Keep checking in with your child. I made the mistake of assuming that things were okay and not asking. We must be vigilant advocates. If we don’t advocate for our children, who will?

7. Be the squeaky wheel. If necessary, have the dean or principal schedule a meeting with the bully’s parents (with the dean or principal in attendance). Do not accept bullying. Unfortunately we can’t all homeschool our children. But what we can do is send a very strong message to the schools that we parents of autistic kids will not tolerate bullying or any form of harassment. Don’t accept “Kids will be kids” or “This is a difficult age group” as excuses for bullying. It’s discrimination against someone with a disability. And it needs to stop.