Persever8ing … about getting stuck on thoughts.

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This is a tough topic, even for parents who have been dealing with it for a long time. It still weighs heavily on me sometimes. When a person gets “stuck” thinking the same thoughts over and over again, it’s not a simple thing; it’s related to repetitive behaviors, impulse control, special interests, anxiety, and who knows what else. I know that there is no quick fix because it continues to be a challenge for many people even after years of working on it.

Obsessive thinking is worrisome for several reasons. First, it can drive you insane when your child LITERALLY perseverates (Persever8s) on something. It causes me a lot of stress when I think that my child may be bothering everyone around him with his thoughts and special interests. Second, repetitive thoughts sometimes cause our kids distress because they don’t always want the thoughts to encroach so heavily on their lives. They may want to think or talk about other topics, but can’t seem to get the intrusive thoughts out of their heads. Finally, I sometimes find myself worrying about how much he enjoys thinking about his special interests. It reminds me of the fears I experienced when he was little and I had to work very hard to get him to be “present” and not stuck on the thoughts that swirled around in his head.

So what do we do as parents? I think there are a few approaches we can take. First, we need to somehow “convince” our kids that not everyone is as interested in their favorite topics as they are. I truly believe that this comes as a big surprise. It never occurs to them that not everyone wants to know every fact and nuance about the Best Foreign Language Film Oscar winners from the 1950s and 1960s. With my son, I have helped him better understand this by talking (A LOT) about the things that I enjoy. Soon after I begin discussing a “special interest” of mine, he quickly says, “all right, all right, I know what you mean.”

Second, social stories have always worked well with my son. Anything that’s visual works better than discussing things with him. He can refer back to them as often as he needs to help him better understand the message I’m trying to convey.

Third, pointing out concrete examples helps make an impression on him. “Do you see how annoyed Squidward gets when Sponge Bob goes on and on about how he likes his job? That is how I feel when you talk about dinosaurs all day long.” I always acknowledge that I understand how passionate he is about certain things, but that I’m not as interested and other people might not be, also.

Since all kids on the spectrum are different, I’m not sure there is one best way to deal with this. Simply knowing this bothers others isn’t enough to change the behavior because the compulsion to talk about it is so strong. When my son was younger, he repeatedly asked questions that he already knew the answer to. I understood that he was practicing talking, but this didn’t mean I could listen to it all day. I made him a visual that let him know when it was ok to ask silly questions, and when it was not. That way, he was given the opportunity to do what he was compelled to do and I got a break from time to time. As he got older, the visual changed to reflect his interests at the time. Thankfully, it worked just as well as the silly questions image I used when he was younger.

Over time, he has “figured out” (translation: he couldn’t take my badgering anymore) that his interests are not universal. I don’t want to stifle his enthusiasm, but I also don’t want him to alienate those around him. It’s a fine line that is almost impossible for kids on the spectrum to walk, but I think it is important to keep working on it. Once they begin to understand why this is important and practice new behaviors, it will help immensely with social interactions.

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Persever8ing…. about special interests. Or everything my son knows he learned from “The Simpsons.”

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All of our kids have “enthusiasms.” Some of them make more sense than others. Just when I think I’ve heard of all the special interests that could possibly exist, I’ll meet a parent whose child is interested in something even more unusual than the others. Their special interests can be so varied.

The stereotype is that all kids with autism LOVE “Thomas the Tank Engine,” but my kids never did. I know one young man who collects televisions that have picture tubes and another who’s fascinated with laundry detergents. I’ve known kids who were enthralled with different kinds of vacuum cleaners while others couldn’t learn enough foreign languages to keep them satisfied. For parents, these intense interests can be perplexing and – let’s be honest – sometimes downright annoying.

When they were young, both of my children were fascinated with “The Simpsons.” My friends told me that I shouldn’t let them watch it. Truthfully, that wasn’t a battle I wanted to fight. My younger son’s interest in the show grew to the point that he would quote long passages from episodes and talk about the characters as if they were his friends. It was fairly easy to tune this out because, to be frank, I wasn’t paying all that much attention. It was just “white noise” to me.

One day while riding in the car, we listened to a story on NPR about a child that had been emancipated from his parents. My kids were pretty young, so I started to explain what the word emancipate means. My older son interrupted me and told me he knew what it meant because Bart had become emancipated from Homer in an episode of The Simpsons. This caught my attention, so I asked him to explain it to me in greater detail. To my amazement, he truly understood the concept.

After that, I began paying more attention to the episodes they were watching. I started listening in while my boys watched the show, and was surprised at how many social topics and current events were interspersed within the silliness. I noticed that my kids were informed about things going on in the world that I thought they were oblivious to.

As time went on, they began to show me things that Bart and the gang were doing that they found interesting. Sometimes, I would watch entire shows with them and realized that they COULD learn things from Bart Simpson that they COULDN’T learn from their peers or me. Generalizing this knowledge to the real world is a topic for another post, but at least they were observing and gathering information about the world around them.

Temple Grandin is a big proponent of turning special interests into a career path. She has done this famously for herself, turning her sensory differences and a love of animals into a successful career. I guess I should start checking the help wanted ads to see if there are any career opportunities for people who are experts on Bart and Homer Simpson.

Persever8ing… about making change.

My son is a pretty capable person most of the time. When we go to restaurants or fast food places, he does a great job making a selection from the menu and placing his own order. He’s able to communicate the meal he wants and any extras (side orders and so on) he would like, and can politely correct the server if they misunderstand what he’s asking for.

However, it all comes to a screeching halt when it’s time to pay the bill. My son painstakingly counts all the bills and change in his wallet, holding up the line and slowing everyone down. Honestly, it’s painful to watch.

My son has both a credit card and a debit card. Using either of them instead of cash would make paying for things much easier, but he likes to “save” the money in the bank and use his cash. Because of this, I knew I had to come up with a way to make paying for things more efficient for everyone.

An easy way to deal with the problem was to create a new rule for handling money after returning from an outing. I came up with a plan that – luckily – continues to work well for both of us. Here are the 2 simple steps I use:

___ 1. I ask him to remove all the change and one dollar bills from his wallet when he gets home from any excursion in which he spends money. All of the leftover coins go into a change jar, while the one-dollar bills go into an envelope in a drawer close to where he keeps his wallet.

___ 2. When he has enough one-dollar bills that he can exchange them for a larger bill, I “buy” the bills from him. He has the choice of taking the change to the bank and putting it in the change machine or I can “buy” it from him. He’s not allowed to put coins back in his wallet.

If my son doesn’t have change nor small bills, then there isn’t the opportunity to count through them at the counter. If all he has are five, ten, or twenty dollar bills in his wallet, he has to give a big bill to the cashier. I’ve found that this system speeds up the process considerably, which is helpful to everyone involved.

Persever8ing……. about transportation

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So, our kids have grown up…mostly. If that’s true, then why are we still spending so much time driving them around???? I believe there are many possible reasons for this:

a. They grew up much too fast and time got away from us.

b. When some of our children got their Learner’s Permits, driving with them was so terrifying that we decided a driver’s license might not be the way to go.

c. THEY are smarter than we think, and decided on their own that they weren’t ready to drive.

d. The thought of having them use public transportation alone is just too scary.

e. All of the above.

One of the greatest challenges for parents is beginning the process of letting go. When you have a child with special needs, this undertaking feels a million times more difficult (and frightening). However, if you’re like me, the demands of your life make it hard to be your child’s personal chauffeur. So, if you’re going crazy balancing the logistics of your personal responsibilities and driving your child all over the place, you might want to give “d” a second thought.

Fortunately, we live in a college town with reliable and easily accessible public transportation. This certainly made the decision to let my son start riding the bus a little easier. At first, he was as nervous about riding the bus as I was. However, I reminded him (and myself!) that the more we practiced, the easier it would become for both of us. I’m happy to say that several years (and many bus rides later), my son uses the bus independently.

Here are the steps I took to teach my son (and a few of his friends) to ride the bus. My plan involves just six simple (well, maybe not so simple) steps:

1. First, my son and I got on the bus that comes closest to our home. We rode it the full length of the route. This allowed us to see how long it would take to go full circle and also to “get the lay of the land” as to where the bus goes.

2. Next, I gave my son and some of his friends the opportunity to choose a few places to get off the bus along the route. Once they picked them, I rode along to their chosen locations, pointing out where to get off and back on the bus. I usually encouraged them to not return to the same bus stop where they exited the bus unless they wanted to go all the way around town to get back to their starting point.

3. The next time my son and his friends rode the bus, I asked a friend to ride the bus with them (I needed a spy to make sure they knew what they were doing). I asked her to board at a bus stop that came BEFORE the kids got on. I gave them instructions to get in touch with me as soon as they got off the bus in the right place (hopefully). When I got a text saying, “the eagle has landed,” I figured they were probably where they were supposed to be. Thankfully, my friend was there to let me know if they were someplace other than where they were supposed to get off the bus. Of course, one of the kids told me later that he “thought he saw someone he had seen before” on the bus. Damn, their amazing memories!

4. By this point, the kids were feeling confident, so I let them ride the bus without any spies on it. I asked some college students I knew to follow the bus in their car (I said the process of letting go is hard!). I’m sure the bus driver wondered why this little car was stopping at all the bus stops, but oh, well. Again, I received a super secret spy message that the group arrived at their destination safely.

5. Since there had been no mishaps, it was time to let them ride the bus on their own. Before doing so, I made sure that all of the kids had one another’s cell phone numbers. Then, I walked the group to the bus stop, saw them off, and prayed that at least one of them would remember to text me when they got there (they didn’t, but one of them – heart pounding out of my chest – responded to my text).

6. Finally, the biggest test of all came next: sending my son on the bus solo from our house. He survived. So did I. Barely.

I’m not saying this was easy. It was VERY hard. But it worked. Now, my son always remembers to text me when he gets to his destination. He’s mastered other bus routes, so he’s able to go more places by himself. He has even learned to change buses en route and transfer from one system to another!

I still worry, but not in the way I used to. I’m confident that he knows what he’s doing and that he’ll call or text me if he needs help. It has taken a long time and lots of practice to get where we are now, but it’s been worth it. When my son and his friends go off together, I ask where they are going and leave it at that. They have “practiced” enough to know how to get where they are going.

Persever8ing … on friendships, or “If he thinks it is a friendship, who am I to say it isn’t?”

As a parent of children on the spectrum, one of the hardest things I’ve had to deal with has been the feeling I’ve experienced when I’ve been around kids who were the same ages as my children.   My heart still breaks when I see just how impaired my son is when in a group of typically developing peers. This has been one of my great challenges over the years.

I realize this is my problem, not his. He doesn’t care if he’s like them. He never has. I’m the one who is embarrassed, or uncomfortable, or whatever those feelings are that I have. Therefore, it’s been my issue to resolve.

I realized long ago that my son was never going to look like the other kids. I saw the social gap widening very early on. So, why did it take me such a long time to feel ok with his being so different? He was ok with it long before I was.

When my son was little, I was very proactive in helping him. I started a social group for him when he was in the second grade. Notice that I didn’t say social skills group. Yes, we worked some on social skills, but mostly I wanted him to have friends. I wanted him to have the same experiences – or as close as we could possibly get – as other kids who would invite friends to their homes to play after school.

Having six kids on the spectrum come to my house every Friday was a real eye opener. It was probably the first time I truly understood that all children with autism are different from each other (and I had two of them living under my own roof!). The first few times his “friends” were at our house, my son came downstairs, said hi, and went back upstairs. That was his idea of interacting with friends.

This group has been a labor of love. It took months for the kids to gel as a group.   Members came and went in the beginning. The kids were wild when they were little. They argued with me when they were little. Their special interests were all over the place, and it was hard to accommodate all of them every week. At times, it was exhausting. I persevered because I wanted my son to have what other kids his age had: friends.

Twelve years later, they still meet. Not every week, but the group still gets together regularly. At this point in their lives, their school and job obligations take a lot of their time, but they try to see each other at least twice a month. I still organize outings and activities, but more and more often, they come up with ideas on their own and include each other in their plans. Their friendships might not look the same as the relationship I have with my friends, but what they have works for them. It meets their needs for connection and socializing, and that’s all that matters. If you asked them, they would say that they are each other’s best friends. They all have different needs and different definitions about what a friend is to them, but what they have works.

Long ago, I gave up my ideas about what a friendship should look like for my child. The process of doing so has been very liberating for me and has given my son the freedom to have friends in his own unique way.

To learn more about the social group I started twelve years ago, see the video below.

Persever8ing … about gifts, or if my son wants a storm door for Christmas, that is what I will get him!

It took me many years to learn how to shop for my kids on the spectrum. When I was growing up, there were some lean years. I couldn’t always have the latest thing that was being advertised. When my own children were small, the issue wasn’t that we didn’t have the means to get our kids the coolest gadgets. The problem was they didn’t want them. I couldn’t believe that they had no interest in all these amazing toys, so I bought them anyway. I still have a closet full of unopened games and playthings to prove it.

When my kids actually wanted something related to popular culture, they were usually behind the curve, so the toys they asked for weren’t available anymore. I’m not a garage sale junky, but when my kids were young, I did spend time at yard sales looking for toys from Space Jam and other movies that could no longer be found in the stores.

While my son had hundreds of dinosaurs, all he wanted was more dinosaurs. Why didn’t I just get them for him? I couldn’t let go of the hope that if I just bought the right “cool toy of the season” he would see how great it was…just like other kids his age. It took a long time for me to realize (and accept) that this was not going to happen.

Eventually, I figured out that my kids really didn’t like surprises. Of course, I knew this, but this was Christmas! Christmas is the biggest “surprises are part of the fun” celebration of the year. However, autism doesn’t take holidays, so they wanted to know what they were getting. That is why they put only what they really wanted on their lists. I had to let go of my idea of the perfect holiday and get them whatever crazy thing they wanted that was related to their special interests.

Recently, a friend of mine told me that the only thing her son wanted for Christmas one year was a storm door. So, that’s what he got and he was a very happy little boy. Now that my children are adults, I still get extremely detailed lists of what they want for Christmas. They aren’t greedy; they just want a few specific things. After many years of getting them things that I wanted them to want, I now get them what is on their lists and not much more. Not even gift cards. (My older son told me that he sees gift cards as an “obligation” to go to a specific store. I guess he is right.) I think I’m over my need to buy cool gadgets and games. Well, not really. I just buy them for other people’s children.

Persever8ing … about Personal Space

My son doesn’t understand the rules regarding personal space…at all. He’s pretty good about using the “one arm rule” when standing near another person, but this hasn’t generalized to other situations. For example, he might walk between two people who are clearly talking to each other. Or, he might go up to two people he knows and get a little too close and just start talking without regard to whether or not they are engaged in conversation.

This personal space thing applies to other things, too. My son needed to be taught what to do in an elevator. It didn’t come naturally to him that he needed to walk in as far as he could and then TURN AROUND so the other people in the elevator aren’t uncomfortable. Also, he had to be taught that when going into a theater, you don’t sit next to someone you don’t know when the theater is only half full. Also, armrest sharing is another issue in which the rules have to be explained. The list goes on and on.

When situations come up and I notice he is doing something that may make other people’s “weirdo radar” peak up, I wait until we are away from others and talk to him about what he has done and why it isn’t socially ok. The next time we are in a similar situation, I remind him about the “new rule” and help him make the right choice. We keep doing this until he has figured it out. Usually it doesn’t take many reminders.

My favorite example of someone playing around with this idea of personal space and making people uncomfortable comes from Michelle Garcia Winner and her Social Thinking ® workshops. This video is a little long, but makes some good points:

Persever8ing …. on the Future, or Yes, I am an Enabler (but trying not to be)

As the parent of a child with autism spectrum disorder, the future has always been my biggest worry. It has been from the minute my son was given the diagnosis.

I once met a child with ASD whose father said that his biggest hope in life was that we would live one minute longer than his son so he would always be able to take care of him. I was an older parent when my son was born, so it’s unlikely that will happen for me. Therefore, for now I’ll continue worrying about my son’s future.

When my son was younger, I spent most of my waking hours figuring out ways to keep him safe from bullies, predators (real or imagined), and teachers who didn’t understand him.  While this was important when he was very young, somewhere along the line I realized that it was his turn to start protecting himself from the scary things in the world. I finally realized that I wasn’t doing him ANY favors being an overly protective mother.

The only problem with my newfound awareness is that my son doesn’t know what are the scary things in the world. Therefore, I have to teach him. The energy I once put into protecting him is now much better spent teaching him systematically about the world and what it takes to live an independent life.

Parents of kids on the spectrum learn early on that their children don’t learn “by osmosis” like most kids do. This means that we have to methodically teach them a lot of things that parents of typical kids can take for granted. I have a very long list of things I’ve taught my son and things I still need to teach him that I will be sharing on this blog in future postings. Spending time teaching my son doesn’t mean I no worry about his future, but it does mean that I can start thinking of his future as brighter as he learns what he needs to know to be successful in life.

Persever8ing … about Thanksgiving

The holidays are stressful for everyone, and when we had young children with autism in the house, we made all kinds of accommodations to help them get through the holidays. It is easy to forget that even though our kids are now entering adulthood, they still feel the same stressors, even if it is not as evident as when they were younger.

For the first time, our family will be traveling over the Thanksgiving holiday to visit our older son and other relatives in a different state. All their lives, my kids have had Thanksgiving at their own house. I’m stressed about the trip, so I can only imagine how my 20-year-old son with autism feels. In thinking about his needs for the holiday, I’m sure I have forgotten something, but I’m trying to prepare him as best I can. Most of the time my son is on “auto-pilot”, but this is a trip to a new place, with relatives he has never met and definitely outside his comfort zone. So far, my planning includes the following:

  •  The relatives we will be visiting have been fully informed about my son and the accommodations he needs. They know that he might not be able to sit at the table for a long time. They know that he won’t want to chat with relatives and tell them about his school, his part time job, etc. They know that he will need a quiet place to draw or read away from the larger group.
  •  My son has a brochure about himself that he gives to people in his life so they can better understand him. This helps him feel less stressed out about explaining himself to others. I’ve made lots of copies to take on our trip so that he can share them with family members.
  •  We are not scheduling ANYTHING else other than Thanksgiving meal with others while we are on our trip. The rest of the weekend will be “nuclear family time” to cut down on the stress.
  •  There will be a schedule for Thanksgiving Day so that our son knows what to expect and when things will happen. If anything unexpected arises, the schedule will be altered so he knows how long he has to endure the crowds.
  •  My son has been “briefed” about exactly who it is we are visiting and what the expectations for his behavior will be. These are distant relatives and there are a lot of them. A visual of the family tree makes it easier for him to understand the relationships between all the cousins and himself.
  •  I am taking care of myself in the days leading up to our trip and being mindful to not show my own anxiety about traveling.

Hopefully, this will be enough to ensure smooth sailing. We can’t anticipate all challenges, and we can’t really control what is going to happen. However, preparing those around us for the things we know will be anxiety-provoking will set the stage for a happy holiday!