Good Stuff

We had G’s goal-setting IEP meeting today and it went well.  I feel very fortunate to be in such a great school system, we’ve never had to fight to get G services and interventions.  They were particularly good at highlighting his progress since the beginning of the year.  It was so refreshing to sit and listen to what he is doing well and what he is working on compared to last year where the director of his preschool stayed focused on what he was doing wrong.  His deficiencies were framed in the context of what the staff needed to change to address issues rather than faults of G’s.

We also got the formal report from his Ados evaluation.  It is an interesting feeling to see your child described on paper and quantified in graphs and charts.  I agree with everything that was written but in some parts I was surprised at the observations.  They are correct observations, but stuff I don’t notice because to me this is just our life with G. 

For example, it was noted that G does not engage in back and forth conversation.  The examiner would offer leading statement like “I have a dog,” and G showed no interest.  He only responded when asked a direct, factually based question.  We’re so used to this that I was surprised to see it noted on paper.  It is just our normal family conversation.  We ask G what he did during the day, but very specifically.  “What did you do for your first work-center today?  You colored?  What did you color?  You colored a monkey?  What color crayons did you use on the monkey?  What was the second work-center you did today?”  He never expands on his answer or asks what we did today, it is strictly an interview.  And I never noticed that as odd. 

Also interesting is according to the report, he does not display any stereotyped behaviors or restrictive interests.  He has topics he gets very animated about like baseball but while he doesn’t always notice that the other person is bored and ready to move onto another topic, he’s not obsessive about maintaining the conversation.  He’s also particularly interested in how cars work, like what all the gauges mean and the rules of driving, but once we leave the car he leaves the subject until we’re back in the car again.  I find this interesting because as I poured over the DSM-IV I kept trying to shove him into these categories by framing his interests as restrictive.  It really highlights why you need an unbiased evaluator to tell you what does and doesn’t fit into the criteria. 

It was an interesting day and a good day.  After all, talking about G is my favorite thing to do. 

Oh, one other thing.  They used the Gilliam Asperger’s Disorder Scale (GADS) to evaluate G and he scored high/probable for having Asperger’s and is similar to 45% of people diagnosed with AS.  So I’m going to start using that tag again in my posts.

Reasonable Expectations

G is having trouble with the concept of contests and drawings.  He is old enough to understand that he is doing an activity where a prize will be awarded.  But he is not capable of understanding that he may not win the prize.  He thinks it is guaranteed that he will be the winner and when he isn’t, he is crushed.  For example, his school uses a positive motivator for good behavior by having the teacher give out tickets if a child has had a good day.  The child writes their name on the ticket and puts it in a box in the secretary’s office.  On assembly day, they have a drawing and a handful of students get prizes.  G was absolutely certain he would be winning a prize on assembly day, even though we did our best to talk about how only one or two people would win and it probably would not be G that won.  Luckily, G was sick on assembly day and we dodged that bullet.  I have never been so grateful that G was sick! 

We were not so lucky last night.  We went to the PTSO Fall Festival and had a great time.  G did very well with the chaos and absolutely loved all the little games that were set up.  He was particularly excited about the cakewalk, which I put off for last.  Finally, it could be put off no longer, G did the cakewalk and did not win a cake.  He looked baffled.  I was able to distract him with cotton candy and shortly after we left for home.

On the drive he started getting upset that he didn’t win the cake.  He kept going over the details of the event; he waited for the music to start, he walked in circles on the squares, when the music stopped he stopped too, and the person on the square next to him won the cake.  He decided that next time he would knock the person on the winning square over and take their cake. 

When he got home, he grabbed his crayons and started drawing industriously.  He created a duplicate cakewalk in his playroom and had me turn the music on and off.  We played until he won and I gave him some goldfish crackers as a prize, hoping this had satisfied him.  But it didn’t.  The poor kid woke up at 1am crying with huge gut wrenching sobs.  I laid with him the rest of the night and he would quiet down for a little bit and then start up with the sobs again.  Neither of us got much sleep and in desperation I promised we would bake a cake this morning and would play cakewalk until he won his very own cake.

I know this isn’t the right answer because it reinforces his need to win every contest, but it was 3:30am when I made the promise and I was truly desperate.  What should I do to help him with this?  I was joking with hubby that we should start playing the lottery so G could see us handle not winning.  Hubby says with our luck, we’d win the jackpot the first time and G would be screwed up for life.  Has anyone been through something similar?  Thoughts or suggestions will be sincerely appreciated.

Should Have Known Better

I don’t invest a lot of money in clothing for G because he is so hard on them.  Particularly his shirts.  I’ll spend more on pants if they have good double stitching and reinforced knees, but for shirts I try to spend $10 or less by shopping clearance sales and outlets.  I made an exception recently and bought him a super cute ski shirt that cost $40 but was intended to be a thermal layer for ski season this year.  Here is the shirt I bought him, the way it is intended to look:

He loves the spider on the front and asked to wear it to school this week.  As G never ever expresses interest in what he wears, I happily let him have an opinion and let him wear it to school yesterday. 

And then, he ate the shirt!  I wish I was kidding, but G is a terrible chewer.  We have dozens of chewy tubes and chewelry scattered all over the house and at school, but he has the ability to zero in on the most expensive item available to him and chews that instead.  Here is how the shirt came home:

    

The two holes are easy to see.  He also mangled the zipper on the front so it won’t open all the way (getting him undressed was fun) and he totally chewed off the corner of the collar.  This morning on the way to school, he was complaining that his tooth hurt.  I bet it does!  I have to figure out a way to break him of this chewing before his permanent teeth start coming in and he ruins them.

Parenting Peeves

DH and I are a pretty good team, and mostly agree on how to handle G.  Except for one petty little thing that is really bugging me.  He doesn’t let G dress himself. 

G gets up very early, and neither of us are morning people so we have a system where we take turns getting up with G and taking him to school, giving the other person a sleep-in.  On my mornings, I set out G’s clothes and he removes his pajamas and puts his own clothes on.  It definitely takes a long time, I have to set aside 30 minutes to be safe and have to prompt often along the way.  But it is a life skill that is necessary so I think it is worth the effort.

On DH’s morning, he gets out G’s clothes, undresses him and re-dresses him.  He’s done in 5 minutes and they’re off to school.  Obviously it is easier and less frustrating, but doesn’t get G where he needs to be in the long run. 

If this is our biggest parenting conflict, than we are extremely lucky.  Mentioning my irritation would only create a big argument out of a little detail so I’m working hard to bite my tongue.  After all, G gets practice every-other-day so he’ll eventually get it.  But it isn’t being done ‘right’ and I’m having a hard time letting it go!

Reaching for Patience

Some days, I don’t think I’m cut out for this.  I’m not patient enough, I’m not tolerant enough, I’m not understanding enough.

G has several of the ‘if you give a’ books, like If You Give a Mouse a Cookie and If You Give a Moose a Muffin.  I was at the bookstore sans children this weekend (and it was glorious) so to be nice I bought a few more from that series, including If You Give a Pig a Pancake, which I presented to G tonight, certain he would be so happy that I bought him a suprise gift.  Boy was I wrong.

You see, G has read this book in school.  This makes it a school book.  It absolutely cannot be read at home, because it is a school book only.  He asked me to get it out of his room, then he asked me to take it back to the bookstore.  He was starting to huff into a meltdown, so I calmly explained that it is night time and the bookstore is closed so I would take it back in the morning but I would definitely get it out of sight.  Even though what I really wanted to do was have a tantrum of my own to protest the ungratefulness of rejecting a gift I put thought into.  I tucked him back into bed and sulked off, only to have him come out of his room 5 minutes later.  Having the book in the house at all for any length of time is more than he can handle, and he now wants me to throw the book in the trash.  I drew the line there, to me books are sacred.  Which is why I’m having an internal hissy fit.

I’m 35, not 5.  I should be able to deal with a 5 year old who is having trouble with his sense of order being disrupted.  Bur darn it – my feelings are hurt!  And the worst part is that I have a couple other books from this series that I was going to give him throughout the week.  Now my awesome mom thing has been crapped on.  I’m going to go stamp my feet and poke my lip out while I pout my way through some ice cream.

More Autism Awareness

Have you heard the latest from Dennis Leary?

“There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can’t compete academically, so they throw money into the happy laps of shrinks . . . to get back diagnoses that help explain away the deficiencies of their junior morons. I don’t give a [bleep] what these crackerjack whack jobs tell you – yer kid is NOT autistic. He’s just stupid. Or lazy. Or both.”

My kid crushes academically.  He turned 5 in August, and he can add, subtract, subtract for negative numbers, multiply, discuss the concept of infinity, and can read, write and spell above grade level.  Above 3rd grade level.  My kid also crushes other children when they don’t follow his rules and is quite industrious about it, far from lazy.  Which is how we ended up with our diagnosis.  But by Leary’s standards, G is just fine.  It is very frustrating because we’ve run into this type of attitude before.  We’ve had several people (mostly males) tell us that G is just an alpha male in the making and we should just relax.  I think it is great that so many people know that autism exists, but when will Autism Awareness turn into Autism Understanding?

Catch!

G wanted to play catch.  He let me know by beaning me in the head with the ball. 

Me:  G, if you want to play catch you’ve got to use your words!  Give me a little warning, don’t just throw a ball at my head!

G:  Sorry. 

G:  Look out - I’m going to throw a ball at your head!

Points for effort.  And note to myself, if I want him to say, ‘would you like to play catch,’ then I also need to use my words and be specific.

Look At Me

I started reading Look Me In The Eye:  My Life With Aspergers last night.  I didn’t get very far, it made my heart hurt so I had to put it aside or forgo sleeping entirely.  I’ve been reading elsewhere that it isn’t good to ask an autistic child (a child with autism?) to make eye contact to ensure they’re listening.  I am definitely guilty of this, I ask G to look at me before I give him important instructions.  I don’t make him look me in the eye, but still.  Today I had an opportunity to talk with him about it.  I asked if it is comfortable for him to look at my eyes and he said no, it is not comfortable.  Then just to see what else is and isn’t comfortable I asked about looking at my nose, ears, forehead, etc.  All are uncomfortable to G.  I asked if there was anywhere that was comfortable for him to look when he needed to listen, expecting him to pick something off in the distance, but he said my mouth.  I confirmed by asking again and it seems he prefers to look at someone’s mouth when he needs to listen to what they’re saying.

It was really cool to be able to talk with him like this.  I know I should take him at his word, but still I worry.  Is it ok to have him look at my mouth when I need his attention?  Is this something that helps with auditory processing?  Maybe I should work harder to come up with some other way to confirm I have his attention?  The one thing I know for sure is that he’ll be able to grow up and write a companion memoir -  “Look at my mouth:  my mother was nuts.”

Welcome to my world

Hubby and I are big believers in science.  I’ve taken this to more of an extreme than dh, but for both of us it is safe to say if it hasn’t been proven with a double blind clinical trial, we don’t believe it. 

We’re also a fairly typical couple as far as this autism thing goes.  As the mom, when autism was first discussed as a possibility I read everything I could get my hands on.  Lots of books, lots of blogs, lots of googling health sites and reading studies.  DH took a more typically male, laid back approach, preferring to wait until we knew something definite before he started reading or researching. 

It’s been 5 days since our diagnosis.  DH just came downstairs looking quite upset.  “Did you know Jenny McCarthy has a son with autism?  Did you know she claims he’s recovered?  Did you know she’s recommending  unproven alternative therapies?  Did you know she said she’d rather kids get measles than autism?  Did you know she’s against the vaccine schedule?  There’s no science for any of this, it’s all anecdotal!  And she’s out there on all kinds of talk shows telling parents this!”

Welcome to my world, sweetie.