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!

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.

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.

Bonnie Sayers, of Autism Family Adventures and coordinator of the recent Autism Twitter Day, recommended that I do a post on Eczema since both my kids have to cope with it.  I intended to write it but kept getting distracted.  Then my sister-in-law sent me some information, and now I figure that’s the Universe’s way of telling me to just write the darned thing already.  So…

Gus and MM have both had to deal with eczema since they were babies.  The Mayo Clinic describes eczema , or atopic dermatitis, as an inflammation of the skin.  Our old pediatrician, when Gus first started displaying the signs, simplified it for me as “severe dry skin.”  It has often been thought that eczema was an allergic condition; however, a New York Times article from April of 2008 suggests a genetic cause.  Since I am by no means an expert on the subject, I’ll just stick to what we’ve experienced with the condition.

Many people experience eczema during the change of seasons or during the cold weather seasons.  That is the case with MM who has had such bad eczema flareups that she’s gotten bad scarring.  Gus gets his flareups in the late spring/summer.  The minute the temperature goes above 70, he gets the patches, usually behind the knees, inside the elbow, the wrists, and between his shoulder blades.  This winter, MM has been getting bad rashes on her wrists and hands, I expect because she is very careful about regular hand washing, which leaves her skin dry.  I send her to school with a hand cream, but what are the odds that a kindergartner will remember to use it all the time?

It has been suggested to me that diet could play a role in the severity of eczema and that certain food can exacerbate the condition namely:  wheat, eggs, milk, shellfish, nuts, strawberries and chocolate.  If you suspect that your child may have a reaction or sensitivity to any of these items, the best way to find out is by an elimination diet, which means removing these things from the diet for at least two weeks to see the potential effect and then reintroducing them slowly, noting any differences.  In terms of my own kids, looking back to when their eczema was at its worst, they’ve only regularly eaten 3 of those things.  When Gus was on a dairy free diet for 6 months, it was during the time of year when his flareups are typically the worst.  The lack of milk made only the slightest difference, if any.  We could possibly try to eliminate strawberries or eggs (MM doesn’t eat eggs anyway), but I think if I tried to remove wheat products from our diet again, I may get slapped with divorce papers…literally…from my husband AND kids. So we will have to leave the dietary interventions alone for now.

Laundry detergents and soaps can affect eczema for some people as well.  Since Gus has always shown sensitivity to anything on his skin (and his father has to an extent as well), we only use fragrance and dye free detergents.  Even when we get the ‘natural’ and eco-friendly detergents, they are always available in a ‘free’ form, meaning no dyes or fragrances.  The same goes for fabric softeners.  We use Dove soaps almost exclusively, only switching if we try some sort of organic soap.  One thing that worked well for Gus was Dr. Bronner’s Hemp/Tea Tree liquid soap.  The rashes actually got smaller almost immediately using that, but neither one of the kids will tolerate it because it smells very strong.  Stinky, but it works.

So, how do we manage the flareups?  Moisturizing.  Lots of it.  Several layers of it, every night.  Because I like to try to use all-natural products as much as I can, one year I tried pure aloe vera gel to manage the rashes.  It worked okay.  It definitely helped, but the rashes and discomfort were always still there, just muted.  And the aloe required several reapplications during the day, which was not all that practical for Gus who was in school even over the summer and couldn’t apply it himself.  For right now, here’s what’s works the best for us:

Immediately after baths - Aveeno oatmeal lotion (or a comparable brand) applied liberally, all over the body, followed by a thick application of good old fashioned Vaseline or some other petroleum jelly.  If there is a particularly bad flareup, I may use the tiniest amount of hydrocortisone before the Aveeno, but we haven’t had to do that much at all this year for MM (Gus isn’t having any flareups at the moment).  During the ‘off’ season, when the rashes go away, I still use Eucerin (or something comparable) after baths because even without the rashes, both kids still have dry skin.

A quick word about petroleum jelly.  I know many people prefer not to use the oil based product.  I tried to avoid it myself (hence the aloe vera).  We’ve tried other means of dealing with the eczema aside from the ones I’ve mentioned.  I have to say - the only thing that has worked significantly has been the moisturizing regimen.  That’s my story and I’m sticking to it.

But since every body is different, I’d be most interested to hear about others’ experiences with treating eczema!  Please share in a comment!

“I wish it wasn’t raining so we could take the kids outside.”

“Well…it is raining.”

How often does wishing for things that simply are not part of reality make us feel worse about our situation?  How often are we not being truthful about what our reality is?  For example, my husband’s statement about being able to take the kids out just made him feel worse about the fact that we were stuck indoors today; wishing that it wasn’t raining, sleeting in fact, wasn’t going to change the fact that it was too nasty to go out, so why bemoan it?  And he wasn’t being completely truthful: He wanted it to stop raining because he was bored, and he wanted to go outside.

What does this have to do with autism?  It occurs to me that at one time I argued with reality.  I worried and angsted and wished for some way to ‘fix’ Gus’s issues, and what was worse, I had these thoughts (or so I told myself) because I wanted him to have a better life.  Except he wasn’t the one complaining.  I think at that time, I wanted me to have an easier life.  I wanted the fulfillment of my own expectations.  I’ve since come to a place of more (not perfect, but working on it) acceptance.

A few years ago, I read a book called Loving What Is by Byron Katie, and her words about accepting reality have stuck with me since.  I haven’t done ‘The Work,’ and I’m no expert on her methods, but I’ve gotten at least far enough that I can deal with Gus’s disabilities without anger or resentment or any of the myriad negative feelings that are often expressed by some people about life with a child on the autism spectrum.  And I’m not judging those people who do feel that way - I’m not living their reality; I can only work with mine.

What’s interesting is that there are two realities that parents of children with autism (and other disabilities, truth be told) have to face.  There’s the reality that this is your child and you have to love and accept him/her for who they are.  But there’s also the reality that your child will eventually grow up and have to function in a society that is not (currently) so unconditionally accepting.  So by necessity, we either have to teach our children to navigate the world, or we have to change the world, or we have to somehow do both.

Until those things happen, I will keep entertaining and teaching and redirecting and doing my damnedest to be patient when things don’t go exactly according to my plan.  The reality is that my plans are pretty insignificant in the grand scheme of things.  I can either go with the flow or fight the tide.  But if I get all wrapped up in the fighting, when the sun finally does come out, I’ll miss it and the chance to go out and play.

I was feeling much more thankful before Gus came home and told me that he threw out the $13 thermos that I bought him because he didn’t like the fact that I was sending him water.  Asking to have juice in his thermos was clearly too difficult.  So much for trying to be environmentally friendly.  Anyhoo, thankfulness for today…

1. I am thankful that the thermos that has been allegedly thrown out was only $13 and not $30 because then I may have lost my mind temporarily.  And yes, it’s not out of the realm of possibility that I would have spent that much on a thermos because sometimes I’m silly like that and I forget that we can’t really afford to do that!

2. I am thankful for the head’s up that I got from a friend today.  I’ve been considering trying to find Gus a neurologist closer to home instead of going back to the developmental specialist an hour away.  But it was suggested to me that if I think Gus might at some point benefit from medication, it might be wiser to see a psychiatrist instead.  Not only are they better at managing medication, but they may also (obviously depending on the doctor) have a better handle on other issues that could contribute to behaviors but have nothing to do with Asperger’s.  I think with any medical professional, everything really hinges on the competence of the individual, but why not stack the deck in your favor as much as possible?  Anyway, it’s something to consider that I hadn’t thought of.

3. I’m still thankful for President-Elect Barack Obama!  Do I think he’s some sort of Messiah who’s going to save the world?  Even if I believed in any messiah, no I wouldn’t think that.  But if he doesn’t manage to do anything else in the next four years, right now, he’s given an awful lot of people a much needed morale boost.

What positive thoughts are keeping you going today?

P.S. Nano word count: 11K +

It’s been a long week and some thankfulness to put things in perspective is in order.

1. I am thankful for the two nights of uninterrupted sleep I got this week.  The third night, last night, was not the charm.  We may have to start taking some other proactive measures before bedtime.  The second time Gus got out of bed last night, I tried taking the bad stuff out of his head - I put my fingers to his forehead and made a vacuuming sound - so he wouldn’t have any more bad dreams.  He seemed to go back to sleep after that.  I think we’re also going to take all these florescent lights out of the house.  They may be better for the environment, but I have a sneaking suspicion that they are not doing very well for him.  I find the noise they make very irritating, so I wonder if they are contributing to some of this.

2. I am thankful to have a husband and father for my children who is relatively engaged with his kids, especially now when the ‘boy’ issues are starting to emerge that I so don’t want to have to deal with.

3. I am thankful that we’ve decided to back off on the casein-free diet.   We’re not going whole hog back to dairy, but I’m allowing cheese back onto the menu.  The pure bliss on my kids’ faces over being allowed to have cheese again made it clear that we’d made the right choice.  It should always be that easy to make kids that happy, so I’m grateful to have been able to do something right by their standards.

Please feel free to share your thankfulness in a comment.  These days it seems more important than ever to remind ourselves of even the smallest blessings.

image from Jannagraphics

“I am a leaf on the wind…watch me soar.”

Serenity, spoken by Wash…moments before he is skewered by flying debris.

That is one of my favorite lines from the Firefly universe and it creates such a lovely image for me.  Can’t you just picture a bright orange autumn leaf floating gently down from a tree branch, cradled and rocked by a light, crisp breeze?  It reaches the ground so peacefully…all is right with the world on this fine autumn day.  And then some kid comes and stomps on it!  Sometimes things just blindside you.

I’m back to the sleep disturbances, not for any good reason, just being cynical.  Because I can’t really do much else, so I indulge for a moment.

I have an online job that I often do at 5am.  This means dragging myself out of bed at 4:45, no matter what time I went to bed the night prior.  But I make sure to leave myself a few days when I can sleep in (which means until 5:30 or 6 - I’ll take what I can get).  How is it, that my children always seem to know which days I can sleep later, and that they unfailingly choose those days to wake up in the wee hours of the morning?

Friday night we had friends over, but I still made it to bed by 11:00.  We had flu shots and soccer on Saturday, but I could have still slept until 6 and had plenty of time to get everyone fed and dressed to make out 8:00 appointment.  MM woke up at 4; she’d lost her blankets and was cold.  Brought her back to bed, tucked her in, prayed for another 2 hours of rest.  No dice.  Gus was there at 5.  He must have figured I should have been working and didn’t want me to oversleep.  Irony is my middle name, I think.

Seriously, Gus was up because of a stuffy nose & cough - can’t fault the little guy for that.  The same cold brought him in for an early morning visit at 3:30 today.  Couldn’t get mad; I had to let him snuggle in bed with us.  When I can’t be mad, I get cynical, just a little, for a brief moment.  Moment over.

I think I will keep him home today.  Perhaps we’ll look out the big windows as we’re sharing a box of tissues for our runny noses, and we’ll find that bright orange leaf on the wind, and maybe we’ll find a few seconds of serenity.  If we’re very, very lucky, no one will stomp on it today.

Thanks to Mo of  Manic Monday for today’s theme!

Four things I’m thankful for this morning:

1. I am thankful for babies.  Not mine, but friends’ babies (not to say I’m not thankful for my own, they’re just not babies anymore).  There’s nothing like a newborn to bring back those old feelings of overwhelming love that you felt for your child when he was born (or she).  We had three solid weeks of hell when Gus was born (typical of new parents perhaps), but after we learned what he needed, he was an absolute dream baby.  MM was awesome from the minute she came home - how ironic that she’s the tough one now!

2. I am thankful that Casdok at Mother of Shrek has created a new blog called Faces of Autism that features some really beautiful people.  It’s a wonderful idea and wordlessly silences so much of the negative autism talk.

3. I am thankful that Congress hasn’t yet rushed to bail out the banks because any more rash and stupid behavior by our government might just make my head explode, and who would clean up the mess?

And not a digression…

I’ve been haunted by a thought for a few days now about the DSMIV and how it needs to be updated.  I think a new category needs to be added: MADD - Maternal Attention Deficit Disorder.  I’m only half kidding.  Here is some of the criteria:

• Can’t complete a task like folding laundry without becoming distracted and consumed by no less then 3 others, one of which should take the rest of the day.  Leaves a minimum of 4 tasks incomplete for at least 2 years time at any given time.
• Can’t carry on adult conversations without losing the thread.  Easily distracted by the child hanging from pants leg or skirt.
• Forgetful about daily needs like breakfast, lunch and/or dinner.  Readily remembers and often exists on snack foods.
• Routinely stares off into space similar to someone having a petit mal seizure, but in reality is just falling asleep with eyes open.  This is one of the first symptoms of upcoming MADD and usually presents in new mothers; however, any level of sleep deprivation can trigger it.
• Sends kids to school with no lunch, backpack, jacket, shoes, or any other essential item.
• Often leaves the home in house slippers, forgetting to change into shoes.  Roaming the neighborhood in plaid pajama bottoms is a sign of advanced MADD.

These are just some of the symptoms I see on a regular basis; there are loads more.  MADD seems to be completely environmental, caused by a deadening of brain cells after extended periods of multitasking.

There is probably no medication or cure for this disorder, but perhaps, since the fed is feeling so generous these days, there could be some sort of social service agency set up for people (there are probably some dads suffering from PADD) suffering with this dreadful condition.  Respite services, regular distributions of chocolate and coffee, massages covered by health insurance, and nationwide mandatory nap times would all be good starting points.

Do you or anyone you know suffer with MADD or PADD?   How do you cope with it?  And, what are you thankful for today?

4. I am thankful that my bizarre sense of humor still helps me get through a day.

“Your assignment is to read up to page 3975…Your assignment is to read up to page 2885…Your assignment is to read up to page 5930…Your assignment is to read up to page 24…”

All night I was being given assignments that I could never possibly complete.  This is Gus’s manner of perseveration.  He repeats part of an idea and then differentiates the last bit.  He does this with questions, with knock-knock jokes, with complaints, with Pokemon speak…with just about anything.  It is one of the harder aspects of his condition for me to cope with.

I have trouble absorbing information or thinking clearly when there’s too much noise.  When the noise is the same repetitive, very loud sound over and over again, it’s all I can do some days to keep from beating my head against a wall.  When that repetition is interfering with something that needs to get done in a timely fashion, homework for instance, occasionally I do pound my head a few times, much to my head’s great annoyance.

When he starts to perseverate, I usually try to get him to stop by saying, “OK, we’re finished with that,” but it doesn’t always work.  On a day like yesterday when he gets completely consumed with the giggles over his fixation, there’s no getting through to him.  Or when he’s upset and perseverating on whatever upset him, all that can be done is to sit him in my lap, rub his back, and rock him until he calms down.

It’s certainly not the worst thing in the world.  Some days I just have less patience than others (I’m in danger of getting kicked out of the Supermom League with that admission, but the truth will out as they say).  How do you handle perseveration?