My Autism Insights

Or a brand new year as it were!  Happy New Year, readers!  Today I am thankful for:

• Getting home safely from our brief New Year’s Eve celebration at my cousin’s.  We got hit with a snowstorm yesterday morning, and decided to go out anyway as soon as the snow stopped.  The roads were kind of bad, but the kids were so excited about seeing her kids that we chanced it.  Her son is a few weeks younger than Gus and has a similar diagnosis.  They usually only interact in passing, but yet always seem excited to see each other.  They did play together yesterday, so it seems that they may progress toward being friends one of these days.
• I am thankful for a very patient and kind waitress this morning when we took the troops out for breakfast this morning.  In my infinite wisdom this morning, it didn’t occur to me that we had waited too late to get moving.  Gus has a much harder time with his coping skills when he’s tired or hungry.  So he got upset that we had to go to our table before he was ready, and he was quite rude to the waitress.  I wouldn’t say he had a full blown meltdown, but he was pretty loud and clearly distressed.  The waitress never even flinched or frowned, just went on as if he were being the most docile child on the planet.  Had I been less agitated myself, I would have thanked her especially.  The world needs more people like her.
• I am always thankful for the chance to start fresh and to try new things.  We got some good news yesterday which was a good omen for things to come.

What are you thankful for at the start of this new year?

  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!

A few things to post about today!  We went to DH’s office party yesterday and one of the staff brought his kids: two boys aged 5 and 2.  I was amazed at how well they ALL played together.  Usually, MM is the one to make friends immediately and to dominate any new children’s attention.  I expected that to be the case since the older boy was her age.  So imagine my shock when I saw that Gus was playing with J with all DH’s action figures!

One thing I’ve noticed before is that Gus can get along, and will actually take an interest in other children, just not his peers.  A two year age gap seems to work very well for him, and he loves babies.   It was nice to see.

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On another note, Barbara at Goal for the Green had honored me with the I Love Your Blog award, and I’m finally passing it along.  (I’m starting to run out of blogs!)  I don’t remember exactly what the rules are, but I’m passing the award along to:

Lainie Sips - This is a tea blog that I’ve really grown to love!   I am by no means a tea aficionado, but I do drink tea almost to the exclusion of everything else.  Lainie has really peaked my interest in different teas with her reviews.

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Finally, Tanner’s Dad has organized Autism Healthcare Twitter Day taking place all day today.  President Elect Obama is looking for input from the autism community for healthcare needs.  So if you’re on Twitter, use the hashtag #HHS and please lend your support and input!

I had also received this about a week ago:

“Early next week, the Autistic Self-Advocacy Network (ASAN) has been invited to give input to the Office of the President-elect at two meetings relating to disability policy in the upcoming administration. The first meeting will focus on autism policy issues specifically while the second will focus on health care policy from the disability perspective. The meetings will be small, intimate and include representatives from several other autism and/or disability organizations as well.

I’d like to take this opportunity to invite people to give their thoughts as to what issues matter to them in relation to Autism Policy and Health Care Policy in the upcoming administration. We’ve been asked to take 2-3 policy priorities into the first meeting and will want to represent some of the specific needs of autistic self-advocates in the second. As an organization that seeks to represent the needs of the community of autistic people and to fight for the rights of ourselves, our families and our supporters, we want to hear from you. Please feel free to either reply directly here or by e-mail to me at aneeman@autisticadvocacy.org . I’m looking forward to hearing from you and please distribute.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
1660 L Street, NW, Suite 700
Washington, DC  20036
http://www.autisticadvocacy.org
732.763.5530″

Even if you aren’t on Twitter, you can make your voice heard.

There were so many supportive and helpful comments to my post yesterday , I felt they deserved a post to say Thank You!!  It always amazes me that there are just so many awesome people who read and comment on my little corner of the Internet - it really boggles the mind some days.

We’ve tossed around some of your suggestions, and obviously this will be a process of trial and error as he grows and develops social skills.  We thought about Scouts, but without one of us to be at the meetings & activities with him, aside from the fact that I don’t see how Gus would even keep up, I’m not convinced that he wouldn’t bolt at the first chance, especially if the local troop is a big one. A friend suggested that maybe they’d have someone who could act as a shadow/mentor, but before I trust my son’s well being to anyone, obviously I’d have to know them extremely well.  And even then, the trust is tenuous at best.  I can’t say I’m the most forgiving person when it comes to some things.

As for sports, I think there may be a couple of indoor soccer games over the winter, but in the meantime, I’m looking into a special needs bowling league.  He might like that.  And I’m going to see if he can hang out, maybe over the holidays, with one of the boys from his class who I think doesn’t live too far.

He loves to sing, so I’m thinking maybe a voice class or chorus might be an option also.

At any rate, I will certainly take all your suggestions and input into consideration, and again, I really appreciate the great response to my question!!

Have a great Saturday night!

As my daughter’s class explores questions of wants vs. needs, and we spend a laugh-filled, lovely evening with some of my husbands oldest and dearest friends, I am forced back to an issue that I often avoid thinking about.  How do I help Gus find a friend?  Are friends a want or a need, especially for a kid who prefers to be alone?

Listening to all the hilarious stories of a group of boys between the ages of 12 and…well, now, I was struck by how such simple encounters made for the longest lasting memories.  I realized just how dumb ‘tween and teen boys can be (No offense, C!  I love the stories and I’m honestly a little jealous of all the fun you all had!) but also that on a very tangible level, they need the wild release that they can only get from being around other boys their age.  The wildness seems to forge them into the men they will become.  There seem to be valuable lessons in that nuttiness.  Look at Mowgli from The Jungle Book.  He had all those adventures with Baloo, which cause Baghera endless headaches, but in the end he was able to become civilized.  He grew from those adventures.  What happens to a boy then who doesn’t have those formative, crazy-male-bonding experiences?

The trouble is mostly that he never seems all that interested in being friends with anyone.  He has, on the rare occasion, approached a boy his age, but it almost never works out and he ends up alone - happily I should add.  There are very few boys his age in the neighborhood, and they don’t have the patience for someone who can’t quite keep up or for someone who takes so much work just to have a conversation with.  I’m usually just happy they’re not mean to him when he’s around; they just sort of ignore him.  Every rainbow colored moon, they will play together if there’s an adult (my husband) facilitating a game.

If he’s happier on his own then, is it right for me to push him into situations where he has to interact with other boys his age?  Is it fair?  Is it setting him up for anxiety and heartache?  But if I don’t, he misses out on a huge part of male development, it seems.

This came up at his parent-teacher conference, and we all tried to brainstorm ways to get him into a social setting.  We thought of music classes or bowling.  Soccer, which is on hiatus now anyway, is too busy to allow for developing much of a friendship.  They run, they go home, end of story.  Bowling has possibilities, and I’ll call about a special-needs team in the area.  Music classes don’t strike me as the best social opportunity, although he does love it.  I won’t even get into the cost issue for music classes.

Should I get him involved in an online community for kids?  Maybe I can find a Pokemon kids forum or something.  A pen-pal would be better than nothing at this point.

There’s also the possibility that I don’t need to be so concerned about this and he’ll be just fine without my interference.  I don’t know - thoughts?  And my apologies if I’m rambly - that kind of day.

Thanks to Mo from Manic Monday

From YourDictionary.com : Harvest - noun - 4. the outcome or consequence of any effort or series of events.

This is the time of year when we typically receive the harvest of Gus’s efforts during his first quarter of school: his report cards.  He gets two reports - a district report card and an IEP report.  I was a little dismayed to see that the two reports were very different.  So during our parent-teacher conference, I asked why this was.

The district report shows his progress and ability in very generalized areas.  The IEP shows his progress in the specific areas that have been targeted for this year.  Generally, he’s doing fine.  But the specifics are pretty shaky.  There were several ‘not progressing satisfactorily’ marks, mostly having to do with his ability to focus and attend to tasks.  Yet, the meeting made me feel more hopeful.

After Thanksgiving, his teacher will be implementing computer time into the routine, and Gus will be allowed to complete at least some of his independent work on a computer.  So there will be no need for us to buy him a laptop for school, and as a matter of fact, the teacher would prefer he not use one in school because it would likely become a deterrent to complete some of the other things he has to do during the day - like group work.  That’s fine with me, and I think that any amount of computer time will be a benefit for him.

So come next harvest time, probably around the time just before or after the New Year, hopefully the results on his IEP report will be a little more positive.  At least I am certain that his teachers’ and therapists’ attitudes toward him are positive, and that is always a good thing.

Janet at Dolly’s Daily Diary was kind enough to nominate me for the Lemonade Award which is given to bloggers who have shown a positive attitude and/or gratitude.  So, thanks to Janet for the honor!

The rules:

Put the logo on your blog or post.
• Nominate at least 10 blogs which show great Attitude and/or Gratitude!
• Be sure to link to your nominees within your post.
• Let them know that they have received this award by commenting on their blog.
• Share the love and link to this post and to the person from whom you received your award.

So here are some of my favorite blogs that inspire me to stay as positive as they do:

Marla Baltes on All That is Dazilous

A Life Less Ordinary

Mother of Shrek

Whitterer on Autism

Bon Bon Gazette

Memoirs of a Chaotic Mommy

Live Life 365

Mayhem Arts

On the Verge

Pregnant with Cancer

Drop by and check out these wonderful blogs!

Also, just a note to those of you who have taken the time to comment, I do read an appreciate every comment left, even if I don’t always respond.  So, thank you very much!  Have a great night!

image by Petr Kratochvil

The past two weeks, Gus has been goofing off with another player on his team.  He and the little girl, T., have been distracting each other a great deal, chasing each other around the field instead of playing the actual game of soccer.  It’s been rather cute and considering that he often keeps to himself, I welcome any opportunity for him to connect to a peer.

Well he connected a little more during the game yesterday.  The mentors were doing a good job keeping both players focused, but occasionally, they would bump into each other and play a quick game of Tag before getting back to drills.  At one point, he decided to grab her hand and they walked downfield together.  Insert image of jaw dropping here.

Of course I couldn’t resist the temptation to ask if she was his girlfriend and to needle him just a bit.  He took it in stride and said that she was not in fact his girlfriend, but his rival.  Glad to see the Pokemon lingo is still firmly embedded in his brain.  We actually had an interesting conversation before he went to bed about who his friends were.  He never seemed to give this much thought, but last night he said that T. was not his friend, and in truth, they don’t know each other well, so in a way I guess he’s right.   But he did tell me something distinctive about each boy in his class (all boy) and he had the happiest expression on his face.  They are his friends.  So much for never being able to forge relationships like the idiot psychologist tried to tell us years ago when he was diagnosed.  Gus will form the kinds of relationships that he wants to and on his own terms.

And if he wants to call a girlfriend a rival, who am I to stand in his way?

Ash and Pikachu

For the sake of expedience (and getting the kids to bed so I can watch a zombie flick) here’s a recap of the highlights:

The family costume theme this year was Pokemon: Gus dressed up as Ash Ketchum, MM was Pikachu, Mommy & Daddy were Team Rocket.  And we were really channeling the bumbling duo by locking ourselves out of the house, remembering the batteries and forgetting the camera, forgetting the extra bags for excess candy, stomping on each other’s feet in the dark…total clowns we were.  Maybe that’s an idea for next year’s costumes.

Gus was concerned that we were missing “Hardball with Chris Matthews and Countdown with Keith Olberman.”

Someone had a rottweiler and the owner told Gus that the dog was pretty vicious and that he should stay back.  Every house we went to after that, Gus said, “Trick or treat…do you have a vicious pet?”

Almost forgot, before we left, the kids took a shot at being hawkers.  They ran outside with no shoes and started shouting that trick or treaters were welcome at our house.  Never mind that there were no people in sight.

MM’s friend fell and hurt her leg, so MM walked next to her with her arm around G’s waist propping her up.  Very sweet.

It was a pretty amusing night all around.  Do you have any funny stories from Halloween ‘08?

Autism is all over the media these days.  I don’t think a day goes by now that someone, somewhere isn’t talking or writing about it.  It wasn’t always this way; remember when you barely even heard the word?  Yet now there are those who seem to think it’s okay to capitalize on others’ hardships (that’s always been the way, maybe), using the rise in autism awareness as an excuse to ridicule/chastise/insult…I recall the stories over the summer of kids with autism and families being treated horribly.  I remember reading the comments on Internet articles that made me wand to go around the country smacking people for their ignorance.  But it has dawned on me that they really have no clue.

These people seem to think that if you are a parent of a child with autism, you must fall into one of two categories.  If you are still at the point of anger/sadness/fear, then you must just be seeing attention? money? a foundation to send your family on a Parisian vacation?  If you’ve come to the point of acceptance where you can acknowledge the challenges of autism but can also appreciate the awesomeness of your child, then you must be - I don’t know - Pro-Autism? (Which is probably something akin to Pro-Abortion - and an equally ridiculous label.)

What it comes down to, I think, is simply that these (many) ignorant people just have no frame of reference and can’t even begin to understand autism.  You might be thinking, ‘there’s no excuse for ignorance these days.’ But, isn’t there?  Come on, we all know how accurate the Internet can be, right?

Anyway, I’ve come to realize just how easily I could have been one of those people.  Some days, life with Gus has been like a Parisian vacation: traveling around a beautiful country where I don’t speak the language.  With some guidance it can still work out all right, but without it…could be pretty awful.

Let’s look at one scenario: Take a person who had very little experience with babies and small children (like me). This person had a child and knew from the beginning that her son was very sensitive, but didn’t think much of it.  And he was awfully cute, so she just adapted and made sure everything was quiet and not upsetting to him.  Anyway, newborns weren’t supposed to sleep, right?  Mother and son grew very close and developed their own internal communication.  It didn’t seem strange that he never asked for things; he had lots of small words; he was acquiring language.  Didn’t all kids repeat those words over and over?  What else were they supposed to say?  And she knew what he wanted most times, so he didn’t have to ask.  It did seem a little odd that he rolled instead of crawled, but everyone develops in different ways, so no big deal, right?  She thought it disconcerting that when his entire daycare class was at one end of the play yard, he’d be at the other end - alone.  But then again, she often liked to be alone; maybe he was just like her.  It was all good for about eighteen months.  Then when the ‘meltdowns‘ - hitting, screaming, kicking (not great for a pregnant belly), wailing inconsolably - started, this mother found herself at a crossroads.

She could head down the path marked, ‘Bad Bratty Kid - Discipline,’ or the road marked, ‘Normal Terrible Two’s - Proceed as Usual,’ or the way marked, ‘Get Help.’

Do you see how easy it is to end up down a negative path?  With no direction, no frame of reference, or even worse, bad guidance, anyone could end up down that mean, intolerant, bad road.  I had no frame of reference, but I was fortunate to have people around me who did.  They were my compass.

Unless they are scouts, how many people always have a compass with them?

I guess my point is that I’m feeling less angry at the ignorant, intolerant people of the world who say such awful, judgmental, hurtful things about people on the autism spectrum.  I’m feeling a tiny bit more tolerant, a little more empathetic.  The behavior is not right, but more worthy than pity than a beat-down.  At least that’s where I am today.