My Autism Insights

Today my thankfulness will center mostly around our visit to the neurologist and to see a classroom.

First, I am thankful that we found a neurologist who actually spent time talking with us and listening to us about Gus.  He spent a good deal of time asking questions and observing.  He talked to Gus, was not condescending to any of us, and actually seemed pleasantly surprised by some of the comments I made to him.  (”How do you know all this?” I explained about my blogging.)  He was very patient (unlike the last doctor) when Gus was climbing and touching things he shouldn’t have been.  This guy didn’t even get annoyed when Gus turned the lights off in the room.  I don’t think I’ll have to worry about him shouting at me if we disagree.  It seems we’ve found a keeper!  Gus will go in for an EEG, and we spoke about medication, but I’m not feeling pressured.  Win!

Next, I am thankful that I decided to take Gus to visit the class I saw last week. I still think he’s better off in his current program, but it showed me that he does have options and also that he has the ability to function better than I was aware of.  Watching her interact with him gave me a slightly different perspective than I had during our first meeting - I liked her.  I’m also glad that the teacher saw the unmedicated version of Gus - she seemed to enjoy his presence.  That’s important in a teacher, at least to my way of thinking.  It was a good experience.

Finally, I’m thankful that my husband took the day off to come to the doctor with us and that my neighbor picked up MM so that we could both go.  As I was telling her, it seems to make a big difference when service providers see both parents taking an active role in their special needs child’s care.  I could read a lot into that, but I think it might be a post for another day. For now, I’m just glad that I don’t have to handle everything on my own.

What are you thankful for today?

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.

I very nearly missed that it was Thursday; I was somehow running a day behind!  Anyway today’s gratitude:

I am thankful that whatever virus or germy thing is attacking my body, it’s being held at bay and hasn’t knocked me out completely.  It would probably be wise to get to a doctor since I’ve probably jinxed myself by writing that.

I am thankful that Sesame Street has never wavered in its quality or entertainment value.  Gus and MM are watching now - Pre School Musical - and I don’t feel the need to beat my head against the wall (unlike when I watch Blues Clues).  Sesame Street rocks.

I am thankful that today is only a school delay day and not a full snow day.  Gus really needs to go to school and get some of his energy channeled into something more productive than building structures out of furniture or testing the recliner to see just how much force it can stand before snapping.  I think he has a possible career in quality control.  Or demolition.  Or comedy.  Or gymnastics.  Good to know he’s got options.

Must run now - I totally did jinx myself.

Please share your thankfulness in the comment section and have a great day.

  image from Webweaver’s Free Clip Art

Since Gus didn’t have school today, it was a perfect time to get him in to see the doctor to make sure his eyes were all right.  They are fine.  The eye exam says that he has 20/20 vision, although I think I annoyed the assistant when I asked if she wasn’t sure he hadn’t just memorized the line. (Which he did and he proved it by reciting it to me after we were back in the exam room.  Not my fault he has such a good memory.)  The doctor gave me some information on tics and said that we should probably not worry about it, but she gave me the name of a neurologist anyway, in case we were interested.  Gus has an appointment at the end of February to see the neuro.

From what I read on tics, they’re not as uncommon as I had thought.  They are defined as “repetitive, rapid, involuntary muscle contractions or vocal outbursts that usually involve muscles of the face, head, neck, shoulders or respiratory tract.” ~Disneyfamily They can last anywhere from a couple of weeks up to a year  before becoming a serious cause for concern.  The movements are frequently transient, meaning they can start in one part of the body and move to another, and generally end on their own.

The cause of tics is unclear, but has been associated to physical growth, stress and nerve disorders like Tourette’s Syndrome (which can include chronic and severe tics).

Apparently up to about 20% of school-aged children may experience some form of tic, and one study showed that the incidence of these movements increased during the winter months.

The advice for dealing with the tic that we received mostly said to help the child relax and to ignore it as much as possible unless it starts to interfere with daily functioning.   We’re not going to freak out over this.  We’ll try to find out what might be causing stress for Gus and will try to help him relax. Any other information or suggestions are welcome.  Otherwise, we’ll wait to see what the neurologist says next month.

   Now as for our Manic Monday on Snow (prompt from Mo of course), here’s a silly conversation I had with Gus at the bus stop while waiting for MM to get home:

“Did you want to play out in the snow today?”

“Yes.”

“Yes??  What do you mean yes??”

“Can we play in the snow?”

“No!  It’s too cold!”

“Why did you say that?”

“I didn’t expect you to say yes.”

Fortunately, he wasn’t too attached to the idea of going out in 20 degree weather, or else I’d be standing outside cursing my own big mouth.  He actually got a laugh out of it, so it’s all good.  Happy Monday!

Because we couldn’t possibly keep the kids cooped up for another weekend, we spent a couple of hours at the children’s museum today.  Gus loves it and MM seems to be gaining an appreciation as well.  Two of the favorite attractions today were a Revolutionary period exhibit and a DJ booth where Gus could play music while I pressed some buttons to turn on some funky disco lights.  He looks good in a sound booth and he loves mics, so maybe…

I’ve been noticing for over a week now that he’s blinking excessively.  He says his eyes don’t hurt, no headache, and he can see.  It may be that he’s tired or that his eyes are straining.  Or he could be developing a tic.  He made a comment the other night just before bed that he was trying to open his eyes.  That freaked me out quite a bit until I was convinced that he could in fact see me.  The problem is that if his vision is getting wonky, he doesn’t have the expressive skills to articulate what’s going on.  So he resorts to language that only makes sense to him.  Still, I think I’ve watched and waited long enough.  I’m taking him to the doctor and hopefully can get the name of a good opthamologist to take him to.

So that’s the update for this Sunday.  Anything interesting with your weekend?

A conversation with my yoga client, a licensed dietitian, brought up this question.  She specializes in working with children with special needs, particularly those on the autism spectrum, and recommended to one parent to try melatonin for her daughter.  The daughter is sleep deprived and suffering quite a bit because of it.  Yet, Mom’s pediatrician warned her against using melatonin , saying it is addictive.  So I decided to do some looking into the subject…again.

A search for the long term side effects of melatonin mostly produced results that said the same thing: no one really knows the long-term effects because sufficient studies have not been done.  There was one study that seemed to indicate that the levels of melatonin produced by the brain over an extended time could be reduced with the use of the supplement.  Again, no one knows for sure, as it is also thought that melatonin levels decrease in the body naturally with age (also not studied extensively).

Gus has been taking .5 mg every night since mid-November, so for a little over 2 months.  I did a little experiment to see if he’d sleep without it now, since many people use it to regulate the sleep cycle and then stop using it.  Last night he had none and slept just fine.  No dependency! I wasn’t really concerned.

I generally err on the side of “use as little as possible for the least amount of time possible.”   Since the jury is still out on long-term use, perhaps that should be a consideration when trying it with children.  Certainly think twice if your child is on any kind of medication, as the two may react poorly together.  But a very low dosage for a while just to try to get your child’s sleep cycle regulated will probably not do any harm.  That being said, I’m not a doctor, so you may want to check with a medical professional first.

Further reading:

Mayo Clinic

University of Maryland Medical Center

Long-term study (full article only available via purchase - this links to the abstract)

If you’ve got any further information about the long range safety of melatonin that I haven’t uncovered, by all means, please share!

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!

Prompt by Mo at Manic Monday

Got home too late to write a post yesterday, unfortunately, but I wanted to post anyway about the apparent tradition in the healthcare field to dismiss or discount what a patient is feeling (or conversely, not feeling). It has always amazed me that so many professionals can tell a patient that there’s nothing wrong because they don’t see what the textbook says they should; it’s easier to say the patient is imagining things.  “That’s not pain you’re feeling; it’s pressure.”  That’s my favorite line.  But, for someone with sensory processing issues, they may feel things differently than the average person.  Pressure, vibration, sound…those things may all equate to pain.

My visit to the dentist yesterday was one example of this tradition in action.  I went in to have a tiny cavity filled - should have been a very quick and fairly painless thing, and mostly it was.  I told the dentist that my mouth is very sensitive - I’ve lived with it all my life, I think I should know by now what I can and cannot tolerate, right?

I dealt with the injection, but apparently Dr. Dentist decided that he didn’t need to wait for me to get numb and started drilling away.  Of course I felt everything.  Then he figured he could wait another ten seconds.  I was more numb, but here’s the thing - it wasn’t just the physical sensation that was hurting me.  The sound of the drill felt like a rusty train spike going through my head.  It very nearly brought me to tears each time he used the small drill.  I wasn’t annoyed with the dentist at first.  He really had no way of knowing.

But once he was done, I gave a small apology for all the ‘jumpiness’ and tried to explain that even after my tooth went numb, the sound of the drill was still painful to me.  “I think you’re more sensitive than your teeth are.”  His tone was dismissive, derisive.  I did not appreciate it.

There really needs to be a nationwide training program for healthcare providers about things like sensory differences and the autism spectrum.  It would hopefully serve to make those providers who like to sneer at the silliness of their patients a little more compassionate.  Needless to say, Gus, who can’t tolerate the electric toothbrush, won’t be going to that dentist anytime ever.

P.S.  This is not to imply that I have ever been diagnosed with a sensory integration disorder, simply that I have enough sensitivities to things that have been discounted by healthcare professionals that I can empathize.

image courtesy of Jannagraphics

‘Tis the season for Seasonal Affective Disorder!  Thanks to Mo of Manic Monday for the prompt, which made something click in my brain this morning that may explain some things about Gus’s recent behavior.

Seasonal Affective Disorder or SAD is a type of depression that usually strikes during the winter months.  More younger people and women are affected, and it can have an impact on children as well as adults.  This condition is likely caused by the reduction in daylight hours, which alters the body’s circadian rhythms (sleep/wake cycles) and levels of melatonin and serotonin in the body - hormones that affect sleep and mood respectively.

Common symptoms in children may include: mood changes, changes in appetite, sleep disturbances, low energy, and trouble concentrating among others.

I bring up the symptoms for children because I think this could be the answer to some of the issues Gus has been having lately and tends to have every winter.  I always knew that he was affected in some way by the colder months, but I never related it to the light, I always thought it was a matter of cold.  However, it’s all making perfect sense - the sudden sleep problems, his waning ability to focus in school, his increasing irritability (especially this past weekend), his disinterest in going out….These could all be individual and unrelated problems, but they could also be related to SAD.  Unfortunately, I was unable to locate studies or statistics about how SAD in autistic individuals.

One of the most common treatments for Seasonal Affective Disorder is light therapy.  If light boxes are too expensive, or if it’s not practical to think your child can sit in front of a light box for 30 minutes or so, there are also light visors (also pricey), or you could try full spectrum lighting.  While there is no evidence that this will cure SAD, they are closer to natural lights than standard light bulbs or CFLs.  And they do make full spectrum CFLs if you are energy and environmentally conscientious.

Other means of relief to try: melatonin to help with sleep disturbances (it’s been working pretty well for us so far), outdoor exercise, proper diet (cravings for sweets and carbs is also common), talk therapy, or antidepressants prescribed by a doctor.

Now, if you’ll excuse me, I’m going to hide this bag of chips, and I’m going to find some full spectrum lights.  Gus may or may not be  seasonally effected, but I definitely am.  Funny how I’m only motivated to do something about it when it might be causing my son a problem.

Have a great day and Happy Monday!

Vitus Bering - the real discoverer of Alaska

A day off from school can be a very enlightening thing.  Gus was home yesterday, and although I always do homework with him after school, it was a different experience doing it earlier in the day.  He absolutely did not want to do the work when I wanted him to and there was a good deal of acting out: rolling on the floor, loud talking, purposely filling in incorrect answers…I was frustrated, he was annoyed - actually this sounds like a typical day, except for what happened next.

Gus was (has been for several days) fixating on geography: who discovered ____; what’s the capital of ___, that sort of thing.  So, instead of doing his reading assignment or his math problems, he was going on about that.  Finally, as he was rolling around on the floor asking about who discovered Alaska, I said, “Well, I think Admiral Perry started out with 3 ships and then 5 more ships followed along.  How many ships got to Alaska?”  Booyah!  Instant transformation!  We got through a sheet of 3 digit addition, 3 digit subtraction, the stupid reading assignment about how to meet a dog (he hates dogs) and then he asked for, DEMANDED, a third math sheet.  He did not want to stop working.  Amazing how such a small shift completely commanded his attention.  Each problem became a made up story about some exploration to some country.  By the way, I stink at geography and I was spouting more crap than a newborn, but he didn’t care - I was working with him on his terms and he loved it!

So this begs the question, “Why can’t his teachers do the same thing?”  First of all, why is what they want to teach more important, more significant than what he wants to learn?  Does he really need to know the proper way to greet a dog?  It’s totally irrelevant to him - he’d be running in the opposite direction.  However, Admiral Perry having to fight off a team of sled dogs because he approached them the wrong way is pretty darned entertaining.

I looked back at some of his assignments, and aside from their irrelevance to his life except for the fact that they were readings about animals and he likes animals (I like chocolate chip cookies, but too many and I will still get sick to my stomach), there was no context.  For example: there was a booklet of geometry questions.  Across the top, he had written, “NOOOOOOOOOOOO!!!”  That was a hint right there that he wasn’t interested in the assignment.  But I wonder, if the teacher had sat him down and said, “Pikachu is battling Paul’s Electabuzz and the only way to make his volt tackle work is if he can bounce off a tree at a right angle.  Find the right angles.”  I bet he would have found them all in a matter of seconds.

I’ve been told on a regular basis that my son can’t or won’t focus.  He’s not the problem here, I’m starting to think.  He can focus just fine - on the things that interest him.  Is it his job to shift his interest to what the educational system thinks is relevant and important, or is it their job to present the information to him in a way that will engage him?  I won’t even dignify that with an answer.

The point is that we have to stop laying blame against people who are just being who they are, and as caregivers (parents, teachers, administrators, therapists, physicians) we need to get over ourselves.  What we think is significant ain’t necessarily so.  If we are going to have any hope of helping individuals on the autism spectrum, or with ADHD, or any kids for that matter, we need to start allowing for some creativity and flexibility in thinking.  We’ve got to think out of the box a little and stop being so draconian - let’s at least meet them halfway.  Can it really be that hard?  I somehow don’t think it is.

P.S. Rear admiral Robert PEARY discovered the North Pole(this is disputed); Vitus Bering discovered Alaska; Henry Hudson did discover Manhattan, but Peter Stuyvesant did not discover New Jersey.  Pikachu did in fact kick Electabuzz’s butt.  Fat lot of good that traditional education did me.  I’m sure Gus will figure out the truth about all these guys, I doubt I’ve done irreparable harm.