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.