My Autism Insights

Mia Hysteria shares her inspirational, humorous and sometimes heart wrenching journey of raising 3 young children, one with special needs, while managing a life of chaos, in her blog: General Hysteria .  Mia has been blogging on General Hysteria since September 5, 2008 about her son, Ben (1), her daughter, Violet (2) and her oldest son, Alex (6).  Alex has cerebral palsy, autism, sensory processing disorder, developmental delays, epilepsy, and ADHD.  Mia is a mother, wife, blogger, and practicing writer.  Candid about her current and pre-insanity-brought-about-by-children life experiences, Mia’s writings will leave you shocked, laughing, and reminiscing. On a laptop, in a cul-de-sac, somewhere in Colorado, she is single-handedly attempting to share her stories, thoughts, frustrations and elations so that no person feels isolated, forgotten or unworthy of their own journey.

He is my first born.  I can still recall doing as many things as possible with him.  I would cut open yard size garbage bags, carefully taping them to the floor before inviting him to sling paint all around.  He wasn’t as interested.  Or placing him with me in the kitchen while I pureed his food rather than buying jar food, talking to him all the while – giving him words to all the crazy things his mom was doing, thinking that would all make me a better mom and him the best raised little man in the world.  I’m far from those ideas these days.

Though I gave up the pureeing of food, I have not wanted to stop the art projects, but those have been hard for us.  The projects that make you feel as though you’re showing your delicately developing child all that the world has to offer; giving your child things to feel, experiment with, explore.  For various reasons, they’ve never worked out for us.  An unfortunate admission from me is years after his diagnosis, and too many times of these best of intentioned projects ending in turmoil or not beginning at all, I threw up my hands and stepped away from showing him this world.  I was wrong.

Today, I am back to wanting to show my Angel more of his world through art projects.  Much of this has come from a better understanding of how his mind works, what his limits are, what he is capable of and what he likes.  Alex has cerebral palsy, autistic features, developmental delays, and more; fun activities can take some planning.  Alex doesn’t have a huge attention span, he can paint with assistance, and patience is a consideration.  This, along with a little sister who interjects herself wherever she deems she’s needed, is perfect:

You’ve all seen these, right?  If you haven’t, go check the dollar bin areas at your local Michael’s Craft Store.  This is Alex’s favorite project. The first hurdle we had to get over, which took just a few minutes…the plane is not in one piece.  We had to work through this one time and now he is versed on what to expect.   The fun begins.The way we work it is to take the pieces out of the bag and then choose our paints.  I encourage him to pick more than one shade of blue (his favorite) and if he’s feeling real good about the project, more colors will be chosen.  We distribute the pieces to the appropriate people (remember his sister is ‘helping’).  Alex always gets the wings.  We paint.

Why this works so great for him is that by the time we need to think about letting it dry so we can paint the reverse side, his attention has been caught by something else…or dinner is ready, or my one year old is pulling at my leg…we can leave the project for later.

Usually, we paint again the next day to its finish.  I glue it at night while he sleeps and in the morning, he’s greeted with a new present, yet another airplane, that he has pride in knowing he made (with his sister’s help).  It’s special for him.  It’s what he loves.  It’s blue.  I showed him another piece of this world.  And he molded this world to fit into his.

What about you?  Are you able to do project activities?  Are there projects that work for you?

Do audio books help individuals with auditory processing disorders to strengthen their listening and processing skills?  It would seem that they do.  According to Christie Berry, Ed. D., in her essay “Reading with your Ears ,” “Listening to unabridged audio books while following along in the book improves language skills, auditory processing, and contributes to an increase in overall cognitive abilities.” This was heartening to find as it validated 2 things I’ve been thinking about.  First, I’m noticing that Gus has a greater ability to focus on something auditory when he’s being read a story and following along (as opposed to listening if I’m asking him or giving an instruction).  So I started wondering if audio books might start to increase the length of time that he can sustain listening. This question was brought about by a second observation I recently made,  this one about myself.

I have terrible listening skills - always have.  Unless I’m very interested in what someone is saying, I zone out pretty quickly.  You can see how that might have been a problem in school since I often didn’t pay attention to what my teachers were saying (except the especially interesting one).  Fortunately, I’m a much more visual learner and a combination of reading and writing things down allowed me to excel, at least through high school.  College was a different story.  I had one teacher, my accounting professor, who droned on so badly that I could not stay awake in his class no matter how many coffees I had beforehand.  Only class I ever flunked.  When I became a teacher years later, there was always a running joke between my co-teacher and myself because neither of us was ever able to listen in the professional development meetings. We’d always say, “we don’t do extended listening.”

Then a few years ago, something incredible and completely unexpected happened.  Harry Potter on CD.  I was already a crazy obsessed fan, so I figured I could listen to them while driving and even if I missed a bunch of stuff, I knew them almost verbatim anyway.  What a surprise to learn that Jim Dale is a wonderful narrator and that I actually did have the capacity to listen to something for a long stretch - if it was interesting.

I’ve since become very fond of audio books and listen to segments of books almost every day.  Even the books I find less engaging to read (Jane Austen) hold my interest with the help of a good reader.  I’m fairly certain I’ve increased my capacity to pay attention to auditory information.  I’m thinking of trying some audio books for Gus (not Harry Potter - my kids don’t share my enthusiasm).  Perhaps they might help him to be able to focus in the classroom a little better over time.

For additional information on how audio books can help with auditory processing disorders, check out “Improving Auditory Processing - Listening to Language” by Sharon Hensley.

Have you had any success with using audio books to develop auditory processing skills?

Tomorrow: guest post from the author of General Hysteria on art projects for special needs children.  Don’t miss it!

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?

Prompt by Mo of Manic Monday .

I haven’t been able to come up with anything for the last couple of Manic Monday prompts, but finally, I’m back in the game.  Today’s word is candy.

We managed to get through Valentine’s Day with a minimum of candy incursions into Gus’s diet.  MM came home with a dragon’s hoard of candy, which I quickly had to confiscate.  So much for the ‘healthy’ drive at her school.  She ate more candy last Thursday than she, cumulatively, in several months.

We learned something interesting when we went to Gus’s school though.  While he wasn’t bombarded with Valentine’s candy (because he was home sick) it has been suggested to his teacher that he be given Starburst as a motivator.  This came from the behaviorist.  Because of his oral sensory issues, chewing on something helps him to focus.  He likes Starburst.  So that seemed like the best choice on short notice.  Carrots were another option, but since he tends to hum when he’s eating them (maybe the crunchiness is a factor?) it’s distracting to the other students.  Since the Starburst is working, I don’t really want to step on the teacher’s toes, but at the same time, I don’t want him eating candy.  He doesn’t process sugar well.

We came to the agreement that she will try to get him to chew fruit flavored sugarless gum (Wrigley’s Extra recently came out with a line) to see if that can replace the candy.  If not, I may allow the Starburst, although I will dislike it.

Any thoughts on what he can chew (he likes fruity flavors) that won’t wreck his teeth and send him into overdrive in the afternoons?  Ideas would be much appreciated, and I’ll thank you in advance if you leave a comment!

P.S. A word on comments: all comments are moderated, so if they don’t show up right away, don’t fret.  They will as soon as I approve them!

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.

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.

Just got back from an IEP review meeting for Gus to discuss whether or not he was approved to received physical therapy services.  It was clear to all that he needs them, so that was the easy part of the meeting.

Then came the discussion about what the behavioral specialist found.  A while back, I posted about our request for Gus to have a one-to-one aide.  Instead the district wanted him to be observed by this behaviorist.  She saw him once (and I still have not heard from her directly, although I was assured that I would) and seems to be of a mind to think he needs a different program.  Do I sound like I’m bristling just a little.  Hell yeah I am.

So my initial concern was that they would try to move him back to the program he was in 2 years ago.  Silly me - I should have known better.  They actually seem to be gearing up to push him into the program I rejected for this year.  This would be a less structured class with 2 more students in the class.  I bit my tongue, expressed my initial concerns, and promised to at least go see the program.

Here’s the problem I have right now - distractibility and sensory issues are the biggest challenges he’s facing now.  How would a more distracting, more stimulating and less structured environment possibly be a good thing?  Am I missing something?  Oh wait - yes - the main thing: it’s better for their purse strings.

I’m definitely past ‘bristling.’  But I shall play nice and go see their program.  I hope no one’s holding their breath for me to change my mind, though.

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.

“Stimming” or self-stimulating behavior is a very common quirk among autistic children.   Gus is no different.  As we were eating dinner last night, I noticed something that he does all the time, especially when eating, and that I usually tune out: he hums.  It’s not the only stimming behavior he has, and honestly one of the least disruptive for me, but for the first time in a long time I paid attention to it and started thinking about stimming in general.

Stimming is often a means of self-soothing and/or a means of getting a sensory need met.  Some common behaviors that are often mentioned in the media are hand-flapping, spinning, or crashing into things.  Humming can be another.  I think, for Gus, when he’s tired and less able to filter out noises that disturb him, the humming seems to act as a white noise.  He also carries on an endless chatter at times, and I think this is another stimming behavior that doesn’t quiet the noises around him, but helps to quiet some of his internal noise.

Many times, these behaviors are discouraged and in some cases all but forced out of the individual, and as I was listening to Gus’s little ‘food tune,’  I had to ask myself: why?  I suppose if we were in public, it might annoy someone, but at the same time, he might get annoyed by people talking too loudly, but I can’t tell them to stop.  I can certainly understand the need to teach him appropriate times and places for certain behaviors, but I don’t see how just stamping them out completely is useful to him.  Sure he can’t talk to himself in class, but when he’s home, why not?

Should we remove these behaviors or simply provide alternate means of soothing/sensory input at certain times and just let our kids be at other times?  I know my own answer to that - I’m perfectly fine with the ‘food tune,’ but what do you think?

For more information on sensory seeking behavior, see my post on Proprioception and Sensory Integration.