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?

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!

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.

  image by Andre Koehne

An illuminating conversation this evening reminded me that ‘the system,’ in other words, the school system, is really not to be trusted when it comes to what’s best for your special needs child.  Many parents either believe that their school district has their child’s best interest in mind, or they believe that they can’t reject whatever the district is trying to push at them.  Neither is true as I was reminded tonight.

I called to schedule a visit to the local school’s special needs class (the one I said no to last year) and the teacher called me back to set up a time.  We got into a very interesting dialog.  Actually, I quite liked her and if Gus ended up with her, it would probably be okay.  But I’m glad I spoke with her directly.  For one thing, last year after she’d evaluated Gus, she felt that he would not be a good fit for her class (she has since changed her opinion since the makeup of the group changed).  The district at last year’s annual review told me that the teacher did think he was a good fit.

You’re probably thinking, “That must have been an oversight or a misunderstanding.”  Perhaps, but it gets better.

When they emailed the teacher that I may be calling about paying a visit, they told the teacher that I was unhappy with his current program.  Now, it’s possible that they could have inferred that from, “I don’t want him to change schools,” but I’m not quite sure how.

They also neglected to tell the teacher how often he’s been bounced around over the past 3 years - she said that even if he is a good fit, he should stay put or he would just lose another year in re-adjusting to yet another change.  Did I mention I liked her?

So the moral of the story is: whenever possible, communicate with teachers and service providers directly because school districts might say whatever they have to in order to get you to go along with their agenda.

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!

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.

  image by Designed to a T

I usually like to reflect on how our lives have developed over the past year.  Gus has had a very up and down year, but I think has come out ahead for it all.  Some of 2008’s highlights:

• Tried several dietary adjustments with no significant or sustained difference in Gus’s ability to focus or self-regulate in school.  But he is healthy which is always a plus.
• Tried medication, which in my opinion was a disaster.  It took my lively and brilliant little boy and crossed the roboticness of a Dr. Who Cyberman with the grumpiness of a Dalek.  I don’t see another medication trial in the near future unless there is some extenuating circumstance.
• Gus learned some new self-care skills this year: he can now put on shoes (with Velcro), dress with minimal prompting in the morning, and can put on fingered gloves independently.
• Gus learned to ride a two-wheeler AND within a month of learning completed a six-mile bike tour - a huge accomplishment for any seven year old.
• He joined a soccer team and really enjoys the game.

Those are just a few of the more momentous events of this past year.  Gus has expressed a desire to “behave better in school” in the coming year.  In addition, we plan to try to get him some more opportunities to socialize, possibly in a singing class or a special-needs bowling league.  In the spring, we should be able to start doing some bike riding together and we’re going to join a cycling club as a family.  That will open some opportunities for more of those long, scenic rides that are so calming for him, and may also allow him the chance to make a friend if that’s his wish.

One of the reasons I’m becoming attuned as a Kundalini Reiki practitioner is so that I can start using Reiki energy to help Gus to stay calm and focused.  If it has the benefit I’m confident it will, I’ll eventually teach him to channel Reiki energy himself.

In terms of the autism community at large, I’ll continue to share my lessons and experiences through this blog for as long as I am given a platform.  In the near future, a fellow blogger and author, Adonya Wong , will be guesting here on her virtual book tour.  She’s written a wonderful picture book entitled In My Mind and will discuss the book and her experiences with her son’s autism.  Adonya’s visit promises to spark some great discussion, and there will be a sweet giveaway as well.  Stay tuned!

So those are a few of our intentions for the coming year.  What progress have you seen this past year, and what are your plans for the days ahead?

To all my readers, new and old: Have a happy and safe New Year!