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.

  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!

  Image from Kickstock Free Images; Prompt by Mo of Manic Monday

Before any of us steps into the  light at the end of the path, there is something that we all should do, we all probably think about, and we all probably keep putting off.  For any family with children, but most especially those of us with special needs children, a will should be very high on our priority lists.  Unfortunately, most of us just keep putting it off indefinitely.  According to a Money Magazine article in 2005,  after 9/11, less than 25% of the victims had wills prepared.

A very basic will, one that pretty much only names guardians and says ’sell all my stuff’ could cost as little as $300 (per person); a fully detailed will might run around $500.  Some attorneys may offer discounts for preparing wills for couples.  You can simply name a guardian (Be nice and let them know you’re doing it first!)  an alternate guardian, and an executor.

In addition, although it may not be legally binding, you can also prepare a letter spelling out all your wishes for the care of your special needs child.  No matter who you choose as a guardian, no one knows your child’s needs like you do, but the guardian would be greatly helped by having as much guidance as possible.  What are your feelings about education?  Medication?  Institutionalization?   The more information you provide, the better.

A small investment and some simple steps could protect your child from landing in foster care in the event of any dispute about who has rights to him or her or them.  Not the most cheery thing to think about, but necessary.  What are we all waiting for?

Here’s my challenge to you: if you are a parent, special needs or typical child- doesn’t matter, and you don’t have a will, before the end of the year, at least make some calls and start the process of having one made.  You’ll feel better when you do.  If you already have a will, when was the last time you updated it?

As the great sages of Poltergeist once said: “Do NOT go into the light. Stop where you are. Turn away from it. Don’t even look at it.”  At least not until you get your will in order.

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 +

We had a beautiful day for Gus’s soccer game yesterday and got a bit of a surprise.  A boy who he had been on the bus with two years ago was at the field watching his sister play.  The boy, T., was always a really sweet kid and so nice to Gus.  He’s in the 8th grade now and in “regular school,” which he was very proud to tell me.  It was great to see him!  T. sat at the sidelines with me watching the game, talking my ear off about any and everything, and volunteering to help out on the field if needed.  One of the players got a little tired out and lay down in the middle of the field.  T. was right there (he knew the girl) coaxing her back to her mom.  Really an awesome young man.

I’m having a bit of a dilemma.  T. does babysitting, and I will be needing one soon.  My biggest issue is that I have a general unease with leaving my kids with a) teenagers and b) males - any males (strictly my own issue and not indicative of any inherent inability of men to care for children) .  While my kids are generally good, especially for other people, you just never know when there will be an ‘issue’ and I always worry that one will crop up and the sitter won’t be able to handle it.  Now, one thing in T’s favor is that since he’s an Aspie and also knows Gus pretty well, he’d have a better insight into how to calm Gus if he got upset about something.  My concern would be pretty much the same as with any of the other teens I’ve considered hiring - attention and ability to control two rambunctious kids.  Also, T. doesn’t live very close, so having him babysit at night may be difficult.

On a completely unrelated note, someone forgot to give Gus the time-change memo.  He was up at 4, which was sort of 5, too early at any rate.  He’s back to the early rising and I’m thinking of trying melatonin to help with sleep, at least until we can get him into a pattern of sleeping a little later.

If you have any thoughts on either the babysitting issue or the melatonin, I’d love some input! Have a great Sunday!

A good friend (B. you are made of awesome!) linked me to a wonderful radio program produced by American Public Media entitled Being Autistic, Being Human.  The program runs about an hour, but there’s a two-hour version of the uncut interview available on the site as well.  In this segment, Krista Tippett interviews Paul Collins and Jennifer Elder(Different Like Me: My Book of Autism Heroes; Autistic Planet), both authors and parents to Morgan, an eight-year-old boy with autism.

Many elements of this show resonated with me and mirrored much of my experience not only with Gus, but with members of both sides of our family.  Paul talks here and in his book, Not Even Wrong: Adventures in Autism, about how many ‘traits’ often run through families of individuals with autism even if those family members don’t present with full blown autism.   I actually had a laugh this morning at an incident, fairly typical for me, at my daughter’s school.

I had gone to the school book fair and gotten completely engrossed with looking at all the shelves (books = crack for me) when I realized that everyone had stopped moving.  The Pledge of Allegiance was being said over the loudspeaker and I hadn’t even heard it.  By the time I stopped to place my hand over my heart, it was almost done.  Paul speaks about this kind of single-minded focus that is common among people with autism and their families, who are often found in, “solitary professions which require deep focus and abstraction.” He had mentioned that when he gets involved in his work it is like turning his ears off. I regularly see this level of intense focus and inability to switch gears in my family, and I’m sure my mom has loads of stories of how rude I can be when I get interrupted from something I’m engaged in.

I was struck by the couple’s candidness about when they first learned of Morgan’s diagnosis.  “His normal was normal to them,” and they really didn’t have any other frame of reference, something that I blogged about just a few days before hearing this show.

Another aspect of the show that touched me was Paul’s discussion of his decision to put Morgan on medication.  This has been a topic that’s come up again and again regarding Gus, and I’m sure it hasn’t been put to rest for good.  He wrote an article about what finally helped him resign himself to the choice: The Vanishing Boy.

While it doesn’t make the edited version, during the interview the question of controversies within the autism community was addressed.  Jennifer explained that she is not of a mind to want to find a “cure” for autism.  “Before we eliminate this, what are we going to lose?” And quoting Paul’s book,

“Autists are described by others — and by themselves — as aliens among humans. But there’s an irony to this, for precisely the opposite is true. They are us, and to understand them is to begin to understand what it means to be human. Think of it: a disability is usually defined in terms of what is missing. … But autism … is as much about what is abundant as what is missing, an overexpression of the very traits that make our species unique. Other animals are social, but only humans are capable of abstract logic. The autistic outhuman the humans, and we can scarcely recognize the result.”

Without the particular abilities of autism, the world might not have had any Newtons or Einsteins, Andy Kaufmans or Andy Warhols.  Hopefully, with shows like Being Autistic, Being Human,  the conversation may start to change more toward how people with the challenges and abilities of autism can be better accepted and integrated into society instead of feared and excluded.

So I’ve learned that I have bronchitis , which explains a great deal, like why I couldn’t breathe yesterday.  However, lack of oxygen will not keep me from showing gratitude today!

1. I am thankful for my extended family for insisting that I go to the doctor today instead of tomorrow.  An extra day without antibiotics would not have been the best idea in the world.

2.  I am thankful that Gus has found a sport and a team that he can enjoy and feel accepted just as he is. Yet, I am also thankful that there isn’t a game this weekend because he really needs to recuperate from his illness this week.

3. I am thankful that the music and headphones strategy has so far been working nicely.  Did I mention that when he was home sick on Tuesday, he sat for several minutes writing a story without me having to check on him once?  I set him up, told him what he needed to do, and he did it independently while I helped MM with her homework.  That was an amazing thing.  And the story was pretty funny too!  I found a Halloween writing prompt online, just to give him something to do besides TV watching, and he wrote about a ghost who couldn’t spell ghost (he spelled is gost).  Totally stream of consciousness, totally funny.

Please share your gratitude in a comment and have a healthy week!

As I was randomly looking netsurfing for something to blog about today, I came across an interesting site: Retrain the Brain .  I’m always on the lookout for ways to help Gus build his focus without medication so the headline “Get Kids Off Ritalin” caught my eye.  The theory behind this program is to teach Palmer method penmanship (remember that??) along with special music to develop the left (analytical/reasoning/executive function) brain.  It seems to make sense to me, but I don’t have $90 to spend on a handwriting program.

So I went and did some research on the Palmer method and found a free version of Palmer’s Penmanship Budget .  We’ve also been trying having Gus do his work with headphones on and his teacher sent home a copy of the CD they use in class.  I think another experiment is on order.

Best case scenario,  the combination of music and handwriting practice will help him.  Worst case scenario, he’ll get some extra practice in an area he needs it.  Nothing to lose.

If anyone has any experience with this theory or with that particular program, I’d love to hear more!

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.