My Autism Insights

The approach of March in the colder parts of the U.S. can bring with it some wacky behavior in all of us  because of a general ‘enough winter’ attitude coupled with a hint of spring fever.  For individuals with special needs, who are often more sensitive than the average person to seasonal shifts, it can be a particularly trying time.  Gus seems to be in dire need of strenuous physical activity, but it’s still too cold for him to want to spend much time outside.

So we went on a little adventure today.  I found a stationary bike that is the perfect size for the house AND for everyone to be able to use, for a bargain on craigslist.  We went to pick it up, taking a lovely scenic drive over a treacherous mountain pass.  We won’t discuss my paranoia - I had several escape scenarios in case we happened to stumble upon a suburban Jason.)  So now, Gus can get his large motor muscles all worked out (he’s loving all the sensory input) and he can play his Pokemon game at the same time.  It’s a win-win situation all around.

Have you gotten any particularly sweet deals on equipment for your special needs child?

P.S. Sorry for the blurry photo - he was moving and I was trying to catch him in a relatively stable position. I didn’t do so well!

Since Gus has been doing a good deal of sensory seeking lately, I’ve been thinking a lot about how to get him sensory input at home.  At school, they’ve got loads of equipment so that he can choose what he needs: giant bean bag, body sock, jumping, and now sugarless gum to provide oral sensory stimulation.  He liked it - yay!  So much better than Starburst! Even better, I found it locally, so I may be able to use it at home as well.  (Don’t laugh - I’ve been looked for a certain flavor of gum on several occasions and haven’t been able to find it.) I’ll let the school work it into his routine first.

One other thing that often does well for him is to be able to utilize his gross motor muscles.  But at this cold time of year, opportunities are limited.  We have a trampoline (and a couch, which is the jumping apparatus of choice) but he doesn’t always want to jump.  He’s got a bean bag chair and a big exercise mat that he likes to roll up in for squishing.  We also have a pedaling thing (if it has a name, I’m unaware of it), which is basically bike pedals without the bike.  They work all right, but they’re a little awkward, and he spends as much time swinging it overhead as he does pedaling.

We wanted to get a small stationary bike, but even the small ones were either too big or too expensive or both.  Well, we finally (completely by accident of course) came across one on craigslist that is not only well within our budget, but within driving distance.  Win!

Hopefully we can pick it up this weekend and we can let Gus ride while he’s watching TV.  I can’t wait!

What sensory support do you use for your sensory seeking child?

It’s that fun time of year (at least in the northeastern U.S.) when the weather starts getting confused - does it want to be springlike or glacial? The fluctuations combined with the longing for spring can wreak havoc and sickness abounds.  It’s hard enough when any child comes down with what a local doctor has recently referred to as “the Crud,” but when a child on the autism spectrum falls sick, there can be extra challenges involved.

Not Appearing Sick…At Least At First

Parents can usually tell when their kids are not quite up to snuff, even their pre-or-non-verbal children, because there are usually signs in addition to the obvious things (i.e. runny noses).  For example, when a child has an ear infection, they will typically tug on the painful ear(s).  But what if the child tends to have an undersensitivity to certain sensations?  Gus used to get ear infections all the time, but often we wouldn’t know it until they were advanced because it took a long time for him to feel and show discomfort.  Even the absence of fever isn’t always foolproof.  In college, I was bordering on pneumonia and only had a temperature of 99 degrees.  While most people get concerned when temps hit 101 or 102, but 100 for me is the “serious” benchmark.  Luckily, my mom paid attention to my behavior got me to a doctor when necessary even when the numbers didn’t seem to warrant it.

So watch for other signs of sickness: changes in behavior or eating, lethargy, sleeplessness that seems out of the ordinary (which can be extra tough if you have a child who doesn’t sleep well to begin with).  Basically, be extra vigilant at the “cruddy” times of year.

Can’t or Won’t Take Medicine

A friend of ours has a daughter who’s been battling “the crud” for a week now.  Medicine is a problem because the child has oral sensory issues.  This means that certain tastes or textures are incredibly aversive to her.  When a child has this type of difficulty, getting her to take any type of fever reducer (which I know some people are opposed to anyway) or other necessary medicines can be a battle.

For coughs or runny noses, I’ve heard from several doctors that it might be better to just let your child’s body work without the interference of decongestants or cough syrups.  However, if your child is incredibly uncomfortable, you could try a cool-air humidifier or a warm air vaporizer.  Even being in a steamy bathroom for a while can help clear congestion.

Sore throats can be soothed with lemon and honey, but if that isn’t happening, try warm fluids flavored to your child’s liking.  Cold foods can also be soothing, but you might want to avoid the ice cream as dairy tends to be a bad idea when mucus is involved.  Frozen fruit or fruit juice, even plain ice, can be helpful.

For fever, if Tylenol or Ibuprofin are not options, you can try cool baths or cool compresses at the wrists, armpits or groin.  If the fever spikes and you need to get it down quickly, or if the other methods aren’t working, you could also try Feverall, which is acetaminophen in suppository form (unless your child can’t take acetaminophen). We’ve always been told that for a fever 101 or higher, to call the pediatrician.

I’ve heard of other methods of fever reduction, like egg whites on the feet, but I can’t vouch for them.

The main point is, at these times of the year when germs seem to be extra active, be vigilant and pay a little closer attention to your child’s cues that may be indicating illness.

I’m no doctor, and these are just my observations as a mother.  If your child appears ill, it should go without saying that you should contact your pediatrician.  But if you have any tricks up your sleeve for when your special needs child is sick, by all means, please share.

It’s great to be in sync with service providers without even knowing it.  Apparently Gus’s Occupational Therapist (OT) has been teaching him to tie his shoes.  For a child with a short attention span and trouble with fine motor skills and coordination, this can be a difficult life skill to learn (tying in general, not just shoes).  Gus had said a while back that he would learn to tie them by the time he turns eight.  Well, that’s coming up pretty quickly, and he might just do it!

I know there are a few strategies used to teach kids to tie shoes .  We’re using the single loop method.  We tried bunny ears, but that just didn’t work for some reason.  Some people use elaborate stories, but ours isn’t too complex.  He sings She’ll Be Comin’ Around the Mountain while he’s tying, which is a double edged sword - he gets the gist of the story, but he also loses focus because of the singing.

1. “She” is on a train coming around the mountain.  So we need to make the train tracks.  Make an X with the laces.
2. The train goes through the first tunnel. Take the tail of one lace, through the tunnel and then pull them apart.
3. Make a mountain.  With the dominant hand, make a single loop and hold in place.  (I find that Gus sometimes forgets to hold onto the loop.)
4. Now the train goes around the mountain and through another tunnel.  Take the straight lace around the loop, and then push from the middle through the second tunnel.  Pull the loops apart.

It’s not a foolproof method, but he’s getting it.  Because he tends to learn well with a musical component (musical intelligence) the song does it for him, but use whatever works for your child.

Has your child learned to tie shoes?  If so, what method worked for you?

I noticed a couple of new things about using music to help Gus focus when he’s doing his homework.  Typically, we use headphones and some sort of quiet, relaxation music while he’s working to help block out distractions. Monday we tried something different.

He hasn’t been using his headphones consistently, but I offered them to him Monday, and he accepted.  I showed him again how to work his MP3, and as I was scrolling through the albums to get to the one he usually likes, he stopped me.  He wanted to listen to Earth, Wind and Fire.  I wasn’t really surprised, but a little skeptical that he’d be able to work with disco pumping into his ears.  I decided to give it a try - he should be allowed to choose what he listens to - but I made the stipulation that if he didn’t pay attention to his work, we were going back to softer stuff.

Homework was completed in record time with minimal redirection or intervention from me.  Wow.

Yesterday I tried an experiment.  Instead of the headphones, I let him have his Earth, Wind and Fire playing from the computer, out loud.  What a disaster!  He didn’t even stay in his seat half the time.

So, apparently, headphones make a big difference, but so does the ability to choose what music is playing.  It stands to reason.  Adults don’t listen to the same thing all the time; we listen to what we’re in the mood for.  And for as much as Gus needs certain routines to remain fixed, the strategies that tend to work, particularly to help with his lack of focus, on any given day are always changing.  A true enigma, that one.  I’m curious to see what he’ll choose today: the Beatles or Mozart or maybe Weird Al?

Imagine you are heading to a friends’ new home for a housewarming (pretend it’s the days before Map-quest and Google-maps and GPS) and all the invitation says is to be a place XYZ.  How would you get there? You turn the envelope inside out, and there are no directions! Admit it, you’d be at least a little annoyed and might end up quite frustrated.  You might even just decide to mail a gift and not bother trying to find the place.  When you ask your friends about the lack of directions, they might say, “Oh, I figured you knew how to get here.”

If you’ve followed a route to a destination many times, it’s easy to forget that it’s not such an automatic process for everyone else.  This is a good analogy for how many parents give their autistic children (or even ADHD children) instructions.

I’ve been guilty of this as well.  I’ll often tell Gus, “get dressed,” and then 20 minutes later, he’ll still be in pajamas.  Once or twice he put his clothes on over pajamas.  It finally occurred to me that giving a child with auditory processing problems a multi-step instruction is probably not the most effective way to get things done.  I won’t even get into how badly “clean your room” usually works out.

Lately, I’ve tried a different approach - breaking down a general request into smaller component parts.  Instead of “get dressed,” I now start off with, “get dressed - pajamas off first…now put on your shirt…now put on your pants…great! close your pants…socks next…” His brain needs each step in the process, just like a computer program does.  Without the steps, the process can’t even get started, let alone completed.

Now, you might wonder if constantly reminding your child about these ’steps’ will make him or her less independent.  I think that, like many things, with enough repetition, these things will become automatic.  If you want to encourage more independence, you could try visual reminders in a sort of checklist format.  For example, in each of our bathrooms, we have steps for using the toilet (i.e. flush, pull up pants, wash hands) with pictures and words so that it was accessible for both kids. I’ll still ask if they’ve done each step after they come out of the bathroom, and I’ll get an exasperated, “yes, Mom,” but at least I know the checklists helped.  At some point in the next 30 years I’ll be able to stop asking.  In the meanwhile, I can shout a little less about things not getting done.

Manic Monday prompt from Mo

The other day, someone was asking about tools to help a teenager with high-functioning autism get more organized (I apologize for not remembering who/where this came from).  Kids with high-functioning autism, Asperger’s syndrome, ADHD, and other learning challenges can find it overwhelming and frustrating to keep track of all their responsibilities as they get older and expectations increase.  There are a few tools and strategies that may be helpful.  Some of these I use in my own home office because I seem to have a harder time keeping my own brain straight with every passing day.

Young Students & Pre-readers

When Gus went into kindergarten, he transitioned from an ABA program to a TEACCH program.   Each student had an office, a desk walled in by tall file cabinets that held the student’s instructional materials and files for the year.  The front of the student’s cabinet held his schedule, small laminated image cards to represent each segment of his day (think of PECS cards).  Each card had a Velcro back and the student could remove each task as it was completed.

With the help of Gus’s teacher, we adapted this system for home to help Gus in managing his routine without constant verbal cues from us.  For example, at bedtime, he could put up his cards and then remove each one (bath/pajamas/brush teeth) as it was done, right up to the point of getting in bed.  Until he was able to set his own schedule up, I could do it for him and he just had to follow it.  It was very helpful at the time.

Older students

There are several computer applications that work wonderfully for getting organized.  I personally use the calendar in Microsoft Office Outlook 2007.  But I also spend a great deal of time in front of my computer, so this type of tool is great!  Google offers a free calendar if you have a Google account.  If your child has a cell phone, many of them have some sort of calender function, or information from an online calendar can be imported into many of them. This may not seem appropriate for a special needs student, but it largely depends on the child.  Some students are much better interacting with technology than others.

The computerized calendars may not be practical for other special needs students, so my next best suggestion would be the Flylady system.  I have no affiliation with Flylady, except that I’ve used her suggestions, and even though I fall off the wagon regularly, they’ve helped me a great deal.  She offers a section of her site geared toward kids including tips specifically for students that can be customized any way they need to help get organized.

You can also get creative and work with your child to create the organization method that best suits him or her.  You can have loads of fun with a large desk sized calendar and some stickers, or perhaps your child is tech savvy and responsible enough to handle more sophisticated tools.  How do you help your child learn to become more organized?

Mary at Bon Bon Gazette and the NJ Moms Blog did a couple of posts on this on this topic that I saw last week, and then I read this comment from a reader to my weekend post:

“I also have a son with aspergers syndrome. Justin is 12 yrs old a very quiet pre-teen.  Who is a 7th grader in Jr. High. My main concern is that the kids at his school has started seeing him as an “easy target”. Justin won’t tell on these kids because he doesn’t want to get people in trouble. He is such a kind hearted boy and wouldn’t even hurt a fly. How can I get him to understand that what these kids are doing to him is very wrong and he needs to get help from an adult to put a stop to this once and for all? Please somebody help me and tell me what I should do as a parent!”

It’s disturbing that bullying is such a prevalent reality for so many students with special needs.  With most kids on the autism spectrum, they may not look any different from their peers, but they often exhibit behaviors or a lack of social savvy that makes them easy targets for bullies.  The harassment typically becomes a serious issue around middle school age and can last through high school.  A conversation with Gus’s counselor revealed that students on the autism spectrum often don’t understand that they are being mistreated; they can think the abusers are their friends and that must be the way friends act.  She mentioned a high school Aspie who would do some pretty outlandish things at the urging of other students because he didn’t realize they were mocking him.  Another child began to view the physical abuse he was receiving at school as a ‘ritual’ and it fed into his perseverative tendencies.  He would actually seek out the bullies because the abuse became his pattern until he was hurt and the school nurse intervened.  The victims will usually not speak up for themselves, and the bullying may not go unchecked until there is some severe incident or the victim’s behavior begins to change and a parent, teacher or counselor takes notice.

Schools are becoming more responsive to these incidents because the situation has gotten so bad.  Although there are federal laws (Rehabilitation Act of 1973, Americans with Disabilities Act of 1990) protecting the disabled against harassment in any educational facility that received public funding, on a practical level, it doesn’t offer much in the way of prevention.  So what can parents do to protect their children from being tormented by their peers?

Be Aware

You can’t be with your child all the time, but you can be aware of any changes in your child’s behavior or appearance.  Notice if your child is coming home dirty, with torn clothing or with bruises.  Changes in behavior may include reluctance to go to school, an increase in behaviors that indicate distress (like stimming), changes in sleeping or eating, flinching, aggression or out-of-the-ordinary withdrawal.  Also, don’t be afraid to ask questions of teachers and classroom aides to stay on top of what goes on during the school day.

Your IEP as a Tool

While you can’t directly have antibullying written into your child’s IEP, there are goals that can be written in to help reduce the risk of bullying.  Goals that specifically work to increase social skills like recognizing social cues, assertiveness, or avoiding and handling bullying can be helpful.  In addition, it may be possible to request services to prevent bullying such as staff monitoring in areas where bullying is likely to occur.  If bullying has or is occurring, counseling support should be made available.

Educate the Peers

Emily at A Life Less Ordinary has had to deal with bullying and came up with a fantastic idea to educate her son’s peers about her son so that they would have a better understanding of some of his behavior.  If Bullying Prevention programs at schools took a similar approach and educated their students about autism and other special needs, it might help reduce the ‘otherness’ of the special needs students.  See what your child’s school or district might have in place for conducting this kind of diversity training.  If nothing’s available, be proactive and try to get something started.  And remember that kids who are neither bullies nor victims can play a role in bullying prevention as well by being encouraged to take a stand against it, as noted in the Autism Asperger Publishing Company’s Winter 2006 Newsletter, which was devoted to the issue of bullying.

Who Should You Take the Issue Up With?

As much as parents want to protect their child’s well being, it is possible to make the matter worse if you address the bully directly – it can just cause the situation to escalate.  But you can’t ignore it either.  Likewise, contacting the bully’s parents might have an adverse effect.  If the incidents occur in school, start with your child’s teacher.  If that doesn’t help, try the school principal.  In severe cases, or situations where the school administration can’t control the situation to keep your child safe, remember that the law is on your side if you have to contact local authorities.  If you still don’t feel that your child is safe, home schooling may be an option to consider, at least for a while.

Other reading

Some available resources:

Preventing Bullying of Children and Youth on the Autism Spectrum

Bullying (and Asperger’s Syndrome)

Bullying Among Children and Youth with Disabilities and Special Needs

NAS: Bullying: A Guide for Parents

And The Gray Center has several books and a DVD available on the topic of bullying as well.

If you have anything to add, or if I’ve misstated something, by all means, add to the discussion of this very important topic.

Our last ‘holiday’ activity was to take a trip into New York City to visit the Swedish Cottage Marionette Theater located near 79th Street and Central Park West (there’s an entrance across from the Museum of Natural History).  You may question, “Why not visit the Museum?”  For a kid like Gus who gets overwhelmed with sensory overload very easily and wants to be everywhere at once, the Museum is fun, but it’s also an endurance trial that greatly shortens the length of time that he can manage himself.  The puppet theater, however, was just his speed.

We saw a production of Peter Pan.  The show lasted 55 minutes, perfect for short attention spans (of a 5 year old and a 7 year old with ADHD symptoms in addition to his Asperger’s).  It’s a very small theater, so even at its most crowded, there aren’t but so many kids.  It wasn’t very noisy or busy, and even the little bit of chatter before the show started was annoying Gus who was trying to listen to the music playing.  He coped.  Once the show started, he was thoroughly engaged and sat through it, probably better than some adults who were (very rudely) up and down, in and out of the theater.  At one point during a set change, there was music playing and a disco ball shone lights on the curtain, stage and ceiling.  It was like when Gus was a kid and used to get mesmerized by the ceiling fan or the wind blowing through the leaves in the trees.  Complete fascination.  Even MM got a little zoned out watching the lights.

It was a very long car trip for us, but worth it in the end, despite the obscene parking cost and the subsequent back pain I’m dealing with today.  We thought about taking the train and then subway, but I was worried about Gus getting overwhelmed and overly ‘bouncy’ in what would be for him a dangerous environment.  In the car though, the kids had a packed lunch and chilled out listening to their favorite music.  We got there early enough that they could spend some time at a playground near the theater to work out some of their energy before having to sit through the show.  Before making the trek home, we stopped in the boroughs to visit with my sister and have a bite to eat.  They slept on the ride home - easy peasy.

Many times it can be a challenge to find entertainment for children on the spectrum because of all the sensitivities to their environment.   I’ve found that little excursions to things like community theater, the puppet theater, smaller kids museums, or outdoor activities have worked best for us.  Both kids enjoy their time without getting sent over the edge.  And that works for me.

image by Erik Drooker

This time of year, with snowstorms and vacations and being cooped up together, kids are bound to get under each other’s skin.  Gus and MM are no different.  We’ve been home together since last Friday and I’ve lost count already of all the petty arguments that are so inane and incoherent I can’t even tell what they’re about.  Last night was yet another of those lovely shouting matches, this one brought on by MM playing some repetitive made up game (loudly) and Gus being tired and belligerent.

Usually, I’d just separate them and get Gus to bed as quickly as possible because I know exactly what is bothering him - the constant sound of MM’s high pitched talking/singing.  But last night - it must have been the extra dose of St. John’s Wort - I was calm enough to push Gus a little further.

I separated them as usual, but then I went to Gus, sat him down (once he stopped tossing around insults about his sister being a ’shampoo mouth’ and a ‘pine toe’) and asked him what was upsetting him.  I got the typical, irrelevant, incoherent, off-topic response.  I persisted and insisted that he stop the jabbering because he is better than that.  He thought for a moment and, with some help, explained that he wanted her to play a different game and that he wanted quiet.  This was a HUGE step for him.  We were even able to talk a little about a better way he could have handled the situation - asking nicely that she play a different game.

Since the situation had 2 sides, I then talked with MM and reminded her that her brother often gets upset when he’s tired and that at night he needs a little more quiet.  We spoke about having consideration for people at different times of the day - early morning and evening when they are likely to want to sleep.  Then we discussed how she could have handled the situation differently: play a quieter game or close the door to her room.

Unprompted, they apologized to each other before bed and everyone is friendly again.  So it just goes to show me that I can’t always fall back on what I know Gus is trying to communicate, sometimes I have to push him a step further and make him use the pragmatic language skills that has developed.  It was a good lesson.

Everyone, have a wonderful holiday whatever you celebrate, and if you don’t celebrate anything, just have a great week!  I may or may not post over the next couple of days.  If I don’t, I’m still sending good wishes!  Thanks so much for  visiting and/or following!