If I sing a song, will you sing along?

This is such a fitting song, for my son. "Sing Along" by The Blue Man Group with Dave Matthews on vocals:

http://www.youtube.com/watch?v=eagbog8_MGI

Susan Senator - "The Dignity Of Risk."

http://susansenator.com/blog/2010/11/the-dignity-of-risk/

An amazing post about a Mom, her 21 year old son with Autism and personal dignity. I especially like this quote:

" If Nat is to become as independent a man as possible, he must be allowed to do what he needs to do, even if it is a little scary, not completely predictable. "

How true. I know how this Mom is feeling, because as my son (now 11) grows older, I am beginning to navigate this uncertain road. We began this journey a few years ago, at the age of 7 by allowing him in the men's locker room independently. The same for the restrooms.

We also started letting him play alone outside, with the rules and boundaries clearly explained. I even role played certain situations (What do you do if you're ball rolls in the street? If a car pulls in the driveway? Our neighbor's dog gets loose? Etc etc).

Last year, we began allowing him to stay home alone for short periods - making sure he knew how to reach us on his sister's cell phone, what to do if someone knocked on the door and what he could/could not do in the house.

Now, he is learning to babysit his sister for short periods - when I have to run to the store or if my oldest is on the late bus from school and I'm at work.

What will come next? I'm not sure. As he grows older and becomes a teenager, I expect he will let us know. Watching him and my oldest approach their teenage years, I can't help but compare the two. In all honesty...its my neuro-typical oldest daughter that is giving me the most stress!!! :-)

Happy Birthday My Beautiful Boy

11 years ago, on October 17th, in the wee hours of the morning you were born. Four hours start to finish, you were in a bit of a hurry. Barely time for the epidural, no time to find a sitter for your big sister (almost two years old then) who was there for the whole thing. Afterwards, she looked at her new baby brother, said "Awww. Can I hab a cookie now Daddy? Pwease?"

She got her cookie and we all got an amazing addition to our family. Barely 6.5 pounds, you were all torso and legs (you still are). Like your sisters, you have your Dad's round upper features and my pointy elf chin.

You were a good baby, within a month you slept through the night.

We had no issues nursing.

You hit all the milestones for an infant/toddler on time.

You had no major illnesses.

You loved your Classic Pooh, Gund Piglet and your fleecy dinosaur blanket from Plymouth, NH (you still sleep with both).

You were a happy baby. You are a happy boy.

You have Aspergers.

You are amazing.

You are funny.

You are smart.

You are loved.

We wouldn't want you any other way.

You define your Autism, it does not define you.

Happy birthday, Jonah...what an honor it is, to be your Mom and Dad.

No Chore Modifications

Our son may receive modifications via is IEP for school related work - but not at home. After school, he is expected to start his homework and finish it - we help if its needed and always look over his work. Instead of giving him the answers, we show him how to find them in the material he has at his disposal.

After homework, he has his "rest" time. This usually means playing with his dominoes in his room. He uses them to role play Revolutionary or Civil War battles of his own imaging. They have been a favorite "spectrum" toy of his since we bought his first set at around age 4. He used to just line them up and knock them down. Then, he started incorporating them into his imaginary play (as he grew older, his imaginary play matured - but it still is very centered around his especially intense interests).

Other times, he will compose a Calvin and Hobbes inspired comic - his original comic "odes" to Bill Waterson's creation, are becoming more witty and unique, as he becomes more confident about putting his own sense humor to paper.

He has chores now - manly ones, we like to call them. Helping Mom, by bringing the filled dirty laundry basket downstairs. Checking the dryer and bringing any clean ones upstairs. Cleaning up after the dog in the yard - he is both disgusted and delighted by this task - listening to his exclamations as he picks up poo, is hysterical (This one is HUGE!!). Then, there are the expected chores - making his bed, cleaning up his floor before bedtime and putting his own clothes away.

As he gets older, our expectations of him both at home and at school continue to increase. The world outside of school, does not have an IEP. There are no modifications for what real life throws at you. A special parking spot, will not prepare him to pay his own bills, hold down a job or live independently as an adult. So we start now, in small ways, here and there to prepare him.

It might mean having him redo a spelling test at home, that he did poorly on at school.

Re-writing that lower case "a" a dozen times, until it looks more like an "a" and less like some wonky doodle (same for lower case "d" and "b").

Practicing "give and take" conversations in the car. Especially in being conscientious of what the other person is speaking about.

Constantly re-directing him to look at person who his speaking to him (he has no issue with eye contact, the other way around).

Giving him places he can freely flap in with no one asking him to tone it down (home, mostly his room. Outdoors. The YMCA.).

Privileges for something well done, without being asked.

Consequences for something he shouldn't have done (and sticking with our decision).

In all honesty, at the end of the day, all I can hope is that we've continued to do our best by him. The biggest dream I have for my son, is for him to be happy - as it is for all my children.

Middle School Week 1

The past week, in Jonah's words (more or less):

I had a great day! But I had to eat lunch alone, my friends' (from elementary school) table was already full when I got there.

Me: How is getting your locker open going? Jonah: Good! No problems at all now (had it down after the first couple days).

Me: Are you making it to your next class before the bell rings? Jonah: Yes! Well...most of the time.

Me: Have you met any new friends? Jonah: Not yet, but I will (please God...let this be true). I see my old friends. We eat lunch together.

***
This past Monday - Jonah gets out of bed and is almost immediately in tears. Very odd for him. I ask him what's wrong. The tears start flowing and he wails "I have gym today. I don't want anyone to see me in my underwear!!" Dad and I reassured him, as best we could - really, we've all been there regarding the medieval torture that is having to change in a school locker room. At the end of the day, I call him from work to see how gym went. "It went fine! No one saw my underwear. Its all good. Can I play Spore on the computer till Dad gets home? I finished my homework." "Yes, you certainly can." I replied.

I'm also keeping an eye out for the cross country/running sign up sheet. In regards to athletics - he definitely has the physical ability - but not always the focus. Since he has a natural talent for running, Dad and I both think that is the school athletics area to encourage him in - especially in the sense of involving him in a peer related activity. He's run with Dad a few times before, (the least being 3 miles and the most being 6) this past summer. Other sports (aside from his karate and swim classes), give him too much of an opportunity for him to become distracted or bored. With running - you can get lost in your imagination if you like and no one is the wiser.

Almost A Middle Schooler...

and so many worries and things to look forward too!

Will he

learn to open his own locker sooner than later?

make it to class before the bell rings?

have meltdowns?

have kids be kind to him, more than they are not?

make new friends?

be able to handle the homework - even though its modified?

have fun?

enjoy cross country?

continue to thrive?

Sacket's Harbor - War of 1812 Grand Tactical

Our son loves history. I mean he LOVES history, especially Military history. At any given moment these days, you can find his nose in a book about the Revolutionary War or the Civil War. So, we thought he would love a trip up north, to see the War of 1812 Grand Tactical in Sacket's Harbor, NY.

We had a fantastic day - watching demonstrations on cooking, metalworking and ending with the battle re-enactment at the end. After, we waked down into Sacket's Harbor and had a fantastic dinner at a local restaurant and sampled some of the locally made beer (1812 Amber). I highly recommend making the trip up to attend this two day event. Not only do the re-enactors do a fantastic job, coordinating and running this event - but its a great way to support our NYS Parks.

Home Safe and Sound

A quick update on my son's camping trip. He had a FANTASTIC time! We were told he did very well - no behavioral or separation issues. The other Scouts seemingly were very accommodating of his quirks. He even earned a "smartest Scout for the day" for his extensive knowledge of the American Revolution. The highlight, for me, was his one phone call home. This from an altitude/hike at 500 feet (the only place they could get cell reception). Upon returning home, he proudly informed Dad that he "had a great time and didn't brush his teeth for a week!"

Lets just say, he had a thorough reuniting with the bathroom and all its hygienic qualities.

All Packed Up

Well, after two and a half hours of packing, my son is all set to go on his first parent free camping trip away from home tomorrow. He and Boy Scouts from all over the region will be spending the next week in the Adirondacks.

They're going to be kept pretty busy swimming, hiking and canoeing. They will also have the opportunity to earn various merit badges in a variety of areas from map reading, ecology and archery - to name but a few things. They may even see bears...hopefully very shy bears...very full and very shy bears...at a very great distance.

As laid back as I sometimes appear to be about my kids, I'm pretty nervous inside! He's acting pretty cool about it too, so I wonder how much of the "away" part has sunk in. I know I'm going to jump every time the phone rings. If it rings later in the evening, I think I'll do more than jump - I'll probably fly right out of my skin. I hope so much he has a good time. If I see him at the end of the week, grubby and full of smiles, that will make it all worth while.

The Best Seats

Fireworks have never been an issue for Jonah, sensory wise. He LOVES them. We live in a great little town, that really loves to put on the occasional fireworks show over the summer. These often follow some great outdoor music. The best part is, we can see the fireworks from the comfort of our own front yard - all but the lowest are visible.

My son loves to recite facts about the Founding Fathers and sing snatches of patriotic songs while the fireworks burst overhead. The past couple of years, he's really developed a deep interest in American History - particularly The Revolutionary War. He danced off camera, just as I snapped this shot.

Tonight's weren't as long as the ones on the Fourth, but the kids enjoyed them just as thoroughly. My son, is now happily in his room, reading my now very dog eared copy of "The Complete Idiot's Guide To The Revolutionary War." If I listen, I can hear him huming something that sounds very Yankee-doodlish.

Beating The Heat

We've had a heatwave in our neck of the woods for the past three days. So, once the worst of the afternoon was over, I put out the slipNslide for the kids to play on. Jonah was a bit put out by the fact the inflatable end of it was broken. It suffered a blowout the other day and is beyond repair. Still, the slide is fine and so we set it out. Normally, you connect the hose to the slide itself, but I thought it would be more fun to hang it over a tree branch and have it misting down upon the whole thing (rather than weakly squirting from the slide itself).

My 6 year old was ecstatic with the new set up and eagerly encouraged her brother to join in. However, the popped end and the unorthodox setup of the hose, was enough to set Jonah off on a "fixation." He grew grumpier and grumpier by the minute - repeatedly bringing up the fact the the slide was "broken" and therefore unusable. He also continually asked for us to go get a new one (the answer being no).

Seeing where this was going we gave him the choice of either playing on the slide as is, or going inside and missing out on the fun. He sputtered, attempted to bring up the "broken-ness" slide again and even started to get frustratedly tearful. Finally, the grumpy mutterings turned to laughter and a good time was had by all.

Watchdog: Dubious Medicine

A link to the Chicago Tribune's year long series of articles on questionable Autism treatments.

http://www.chicagotribune.com/health/chi-autism-storygallery,0,6581479.storygallery

Playing Clue

First Solo Trip Away From Home

My son is in the Boy Scouts.  This coming Sunday, he will be leaving with his pack for a weeks stay in a state park, just over three hours away.  This is his first ever trip away from home (other than an overnight at a friend's house).  Neither my husband or I will be joining him.  My husband will be away for a two week National Guard drill, so that leaves me the solo parent at home, with our other two children.

The adults in the group are aware that he has Aspergers.  The kids, some understand and don't think twice about it.  Others politely ignore him.  Only one, purposely tries to bother him.  We've made them all aware of what Asperger's means when it comes to our son and what to keep an eye out for (mostly his wandering attention span).

I know that he and the other boys will be kept busy from the time they wake up till the time they go to sleep with various activities and events.  I know that the older Scouts will be acting as mentors to the younger - so there will be additional eyes watching over my son and the other boys.  But still, I'm his Mom and I worry:

About bears, bullying and how vigilant the lifeguards are.

Will the other boys include him?

Will anyone be mean to him?

Will he remember to use his bug spray?

Will he lose his flashlight?

Will he behave?

But most of all, will he have fun?

Why Do I Ignore Writing?

I have another blog, where I talk about my attempts at doing my first triathlon.  I've been pretty consistent about posting updates on my progress so far.  So why do I struggle with this one?  Why can't I seem to write about a topic that is so close to my heart?  Or maybe that's the reason?

Endings, Beginnings and Recollections

My son's final days of elementary school are here.  Homework is dwindling (THANK YOU), fun end of the year activities have started and somehow - I've found myself nominated as PTA secretary for the next two years.  This Friday, I have a meeting regarding his IEP and transition to middle school.

What a long, rewarding and sometimes frustrating journey these past seven years have been.  He began early intervention, just a month shy of his 4th birthday and only about 8 months after his diagnosis of Autism/PDD-NOS.  I can still recall this wee little boy, in his favorite baseball cap, climbing the steps up into the bus.

Things I Saw Today and A Thank You

My kids all swim at the same time/same day.  I was chatting with a friend and each time Jonah came to my end of the pool, he stopped, waved and said "Hi Mom!!"  It's amazing to feel so loved.

Earlier this same day I walked over to school to drop off some lunch money for him. He was actually in line for lunch at that moment, so I tapped him on the shoulder to give him the check.  As I turn to go he says "Wait Mom, can I give you a kiss??"  Instead of teasing, his classmates in earshot all went "Awwww!!!"  One hand, face unseen, reached out to ruffle his hair.  I wanted to grab that kid and hug him.

How lucky am I to have such an amazing kid?   Between the teachers and the the Y Kids staff/Swim staff at the YMCA, he's made amazing progress in every area of his life.   The Y Kids staff in particular...thank you each and every day, for the wonderful work you do. You truly make an impact.  You, as much as any of his school teachers, have been instrumental in the progress he has made.  It does not go unnoticed, or unappreciated.

Thank you, so very very much.

Why "Spock?"

Because I saw a t-shirt that read "Spock is not a Vulcan.  He is an Autist with pointy ears."

I loved that.  Any Star Trek geek worth their salt, knows of Spock and his internal struggles with his Human and Vulcan side.  Which is his true nature? Which does he deny? Ultimately, in the most recent Star Trek movie, we get a suggestion that Spock is attempting to make peace with both sides and harness the strengths of each.

Being Vulcan is not being emotionless, neither is being Autistic.  What it symbolizes, is the struggle to navigate a world you don't quite fit into but are a part of.

Lastly, as I've said before...I'll take the humorous over the sadness.  I would rather laugh, than to cry - to have hope over despair.

So...live long and prosper.

Asperger's, Manners and A Mother's Worry

I'm currently reading the book "The Way I See It." by Temple Grandin. In it she discusses some of the day to day issues of raising a child on the Autism spectrum. One topic particularly caught my attention, it was on manners.

With all our children (I have three), we have done our best to teach them good manners and model them as well. As my son entered his threes and was diagnosed, we never saw that as a reason to excuse him from a bad behavior. It has often meant more patience, more redirection (especially, being creative as to how we redirected him) and more repetition of the behavior we expect.

Recently, my son had what can only be described as a very bad day at school. During class (this told to us by his teacher), he was feeling frustrated and in turn, this was making him lose focus. The teacher told us, that he took him out to the hall where they could talk privately and give Jonah a chance to regroup/refocus/calm down.

However, my son was already in such a state, that this gentle redirection didn't work and he wound up yelling at his teacher. Thankfully, he has a wonderful teacher and instead of being REACTIVE he was PROACTIVE. When he told us what happened, he stated he did not send Jonah to the office as is normally the case. The teacher saw how upset my son was in regards to his outburst and how out of character this was for Jonah. Instead, the teacher chose to work with directly with us, in how we handled the incident. Note that - he worked WITH us, he listened and followed our wishes. I am so very grateful for this.

So...how did we handle it? Consequences. We have always been firm, that both good and bad actions have consequences. Some you might like and some you won't. The first step was a face to face apology to the teacher, stating what he did wrong, why it was wrong and how he would endeavor not to do this again. The second step was a letter of apology, expanding on his verbal apology. Lastly, his privileges at home, for a week were determined by how he did each day at school. The teacher would let us know in his agenda, how the day went and from there he either earned or was denied use of the tv/computer/DS.

I've been working on this post for almost two weeks now...it is hard for me, when our son has moments like this, to put feelings into words. It touches upon deep-seated worries and fears for him and his future...and yet, who knows what the future will bring? Each day we do our best as parents, educators and as people on the spectrum.

We hope its enough, we pray its enough and watch with worried eyes as our loved ones navigate the neuro-typical world.

We are hyper aware of how others perceive our children. Each small act of kindness, understanding is treasured and stored away in memory.

We ask for patience, awareness and friendship.

We don't ask for pity.

Lastly, I leave you with an excerpt of an MSNBC interview with Temple Grandin, on the topic of the importance of manners for children on the spectrum. I encourage you to read her books, as they are wonderful source of information and inspiration.










Temple Grandin: "The other thing is, teach these kids manners. I was raised in the ‘50s and ‘60s, and manners were drilled into me. I see kids [on the spectrum] today that have no manners. That’s going to hurt them. You can’t punish a child who is acting out because of sensory overload. But it’s unacceptable to see kids throwing things and slapping people. I see kids with Asperger’s [a mild form of autism] who can’t hold a job because they are constantly late. Teach kids to use an alarm clock. This is common sense and sometimes we forget about common sense. Autism is used too much as an excuse for bad behavior."

http://www.msnbc.msn.com/id/35150832/ns/health-mental_health/

Autism and Algebraic Concepts...

not always like cookies and milk, coffee and cream - pick your metaphor.  I SUCK at math...ok, "suck" is too kind a word...I am stunningly AWFUL at math.  When you have to get your 12 year old to help you, help your 10 year old (with Aspergers, no less!) do their math homework, you know you're in over your head.  This is usually my husbands "milieu." Everything else, I'm solid on.  God help me, he's only in 5th grade...

I'm Not Complaining...

about my son's latest report card.  2 years ago, he was a year behind in most of his subject areas. This year he is almost caught up or at grade level in nearly all of them.  His Science - the grading on a scale of 1 - 4 (4 being the best), was ALL 4s.  Awesome! Fantastic!  Math, was holding steady.  Social Studies/History - a bit shaky, but we figure that is because he is more likely to do well if the topic interests him.  So...what did he take a step back in?  Focusing, step by step directions and Paying attention.  Next teacher's meeting, I'm going to point out - and I hope they agree...that given his grades in his various subjects,  I think he's getting it.

Do The iPod Shuffle

My son loves his very used, hand me down iPod Shuffle.  It's the 2nd generation version.  It's easy for him to keep track of, since it clips on to his clothing or even edge of his blanket at bedtime.  He has a quirky taste in music - Peter Gabriel, Dave Matthews (yes!) and Blue Man Group.  Often at night, as he's falling asleep listening to it, you can here him singing snatches of song.  It's probably not surprising, that listening to his music gives him the chance to unwind more effectively than when he flaps.  It is also far more preferable than the DS - which sometimes elicits a minor skirmish/meltdown when its time to turn it off.

Right now, his current favorite song is the Dave Matthews/Blue Man collaboration "Sing Along."  I find the lyrics to the song, especially fitting.

http://www.spike.com/video/sing-along-blue-man/2463330

"I Can't Beat The Level!!!"

My son...right at lights out, finishing up on his DS game...comes out into the livingroom in tears.  He can't beat the level he's on, in his Sonic The Hedgehog DS game.  Oh, if life's problems were only this simple...