Autism and Progress

The Boy earned all A’s this quarter, and I was so proud.  I was over the moon, though, when I read his program teacher’s comment that he has made great strides with his social communication over the past two quarters (ever since he has started at his current school).

progress

You see, report cards don’t tell you much about neuro-typical kids, let alone those on the spectrum.  Traditional report cards, anyway.  They don’t tell you about improvement and progress, they are simply a snapshot made up of a bunch of other snapshots about whether or not your kid knows what the female reproductive part of the flower is, or what an Egyptian dynasty is.  Those snapshots do not tell you whether or not your child is making friends, able to initiate a conversation, or independently pack his own backpack.  Report cards most definitely don’t tell you those things.

And in an autism household, where we take every day as it comes, and don’t think too long or hard about where The Boy will be and what he will be doing in 10 years, because there is no way to predict, and therefore little practical use in worrying/dreaming about it, I really don’t care if he knows what an acute angle is, or what the word “illuminate” means.  I’m very glad he has access to the 6th grade curriculum (and would be fighting the system tooth and nail if he didn’t), but I know how little of it he will actually use in his day-to-day life (because no one really uses any of it in their day-to-day lives, neurotypical nor on-the-spectrum).  I am much more interested in that IEP progress report that tells me how he’s doing in terms of counting change, and flexibility with his schedule.  That set of stapled sheets that is a report on the defined goals that the people who know him best have set for him for the year is way more important to me.  Because the more he succeeds at making progress toward those goals, the more I can plan for his future.  Because those skills, the being-able-to-make-a-joke-that-cracks-up-the-entire-band-class-including-the-teacher skills?  Those are the ones he’s gonna need when he’s done with school.  And those are the ones I care about.

The Lego Movie: An Autism Mom’s Review

Last weekend, Grammy and I took The Boy to see the Lego Movie, and if you haven’t seen it, you should.  It is delightful, and not just for children.

The main reason I enjoyed it was the message.  For years, I have lamented the lack of room for creativity in today’s schools.  I used to have a poem somewhere about how school crushes creativity by creating sameness, and the paradox is that in a society that claims to celebrate the individual, the opposite is usually the case, at least as I have observed.

When I was young, I was involved in Odyssey of the Mind, which was a contest in creativity, giving kids the parameters of a problem, and seeing how they could solve the problem.  I don’t even know if it exitsts anymore, but  I doubt kids today would have any interest in something like that, let alone excel in it, and it’s through no fault of their own.

The Boy's building - no instructions! - constructed at the Lego exhibit at the museum last year

The Boy’s building – no instructions! – constructed at the Lego exhibit at the museum last year

In fact, Legos themselves have changed over the years, increasingly being sold in kits with directions on how to make something specific, rather than a bucket of bricks with which to make anything a kid desires.  This can create problems in an autism household when a specific brick goes missing, and therefore the directions cannot be followed!  I posted about a fix for this a long while ago, but directions can become a problem, for sure. The message of the movie, surprisingly, was that it doesn’t have to be that way.  That there is a benefit in following the directions, and teamwork, but that it has to be balanced with individual desires, and creative thinking.

From the autism mom’s perspective, I watched my son actively engaged throughout the movie, often laughing loudly, and catching lots of the subtle jokes.  It was fantastic to see him enjoy it so much.  And Grammy and I enjoyed it thoroughly, as well.  If you haven’t gone, you need to.  There’s a reason it’s still in the theaters!

Managing My Own Anger

Yesterday was a doozy of a Monday.  I felt like Alexander in the Terrible, Horrible, No Good, Very Bad Day (a favorite when I was growing up).  There was an ant in The Boy’s juice, the cable box went wonky again, a co-worker lied to our boss and threw me under the bus for a mistake that was very clearly hers and hers alone.

And mid-afternoon I get an email from The Boy’s principal saying perhaps he could start on trumpet this week because he doesn’t meet the “criteria” to play the tuba.  Yeah, that just happened.

There were no “criteria” to play the tuba even mentioned at our last meeting.  That band director is discriminating against my child.

boy with tubaLuckily, I didn’t get the email until about 3 or so, because truthfully, I couldn’t concentrate on work after that.  I was extremely preoccupied, and downright pissed off.  Heart beating rapidly, I left work right at 5, and drove to pick up The Boy, planning my evening around the big, long response I was going to write.

The Boy was in a great mood, and I faked a good mood for him, as well.  I shared the happenings with my parents and strategized about next steps with them.

When we got home, I began to type all of the phrases that had been rolling around in my head for three hours, constructing my three-page response.  And I began to shake uncontrollably.  Not with rage, but with anxiety.  I also made several trips to the bathroom, which I have had to do when stressed since my mid-thirties.  When The Man came home an hour later, we talked, and strategized some more, and I continued to write.  I spoke with The Boy’s autism teacher on the phone to gain some insight, and then I continued to write.  The Man knows that getting all of my thoughts down just right in my response was the key to my calm.  Until it was a finished draft ready to send, it would be on my mind.

And of course, I couldn’t sleep last night.  I knew it would happen, but there’s nothing I can do about it, so I just roll with it, going over things yet again in my head for several hours.

My draft is now complete, and it is a killer letter.  I have a plan in place, no matter the response.  He will play the tuba, and will not be switching to anything else.  I’m still angry and anxious, but I’m managing it, thanks to my outlets: writing and planning.  The key is knowing yourself enough to know how you are going to respond to anger, both physically and mentally, and to have something accessible which calms you… A bit like our kiddos, huh?

Feeling the Love

That's my boy!Last night, The Boy had his first band concert of the year, and played music he has had for about two weeks on his new instrument, the tuba.  There was standing-room-only in the auditorium, and The Man and I watched from the back with The Boy’s grandparents.  We heard him play, as he is the only tubist in the 6th grade band, and we heard him play well.  And I was proud, listening to my boy do his best, and do it well.

It was a great concert, and after it was over, he was geeked, excited.  Once in the car, he went right for his DS (a re-discovered love, as it has been in the bottom of some drawer for a couple of years), but was giggly and goofy.  We had to pick up The Man’s truck, and he loves to ride in it with him, so I drove on alone for the few short miles to our house.

As the car started to climb the rise of the bridge over the Intracoastal Waterway, I began to tear up with emotion as I realized how thankful I am for all that has happened in the past year.  Maybe it’s a little early for the annual retrospective, but it really has been a great couple of weeks.  Things were getting a little dark there for awhile, but now The Boy is in a much better place, school-wise (and a GREAT band program, to boot!), I have a new job that I love, and the very best husband ever.  And we’ve moved to a place where it reaches 70 degrees on the 5th of December, which also happens to be around the corner from the very best parents in the world.

Can you feel the love?  I sure can. <3

New School Visit

Today, The Boy and I go to visit his new school in the afternoon.  I am picking him up for lunch so that he doesn’t have to go to social studies.  We’ll have a special McDonald’s lunch and then head to the new school to see where his classes will be and meet some of his new teachers.

The Boy is extremely excited, and asks for a daily report about how long it will be before he goes to his new school.  We got the phone call today from the company providing his transportation, as they thought he was starting tomorrow.  I told them they could wait another week, but The Boy was excited to learn that he will be transported to and from school in a gold-colored Town and Country van.  It will be a long trip for him, but he has missed riding this bus all these years, and was always so envious of his buddies who were “bussed” in from other districts at his old school, often in charter company cars like he will now be using.  I think he will love it.

plannershot1I hope he can contain himself at his current school for one more week.  We got a note home from his social studies teacher on Thursday that he was “jumping out of his seat” during class, and I immediately thought, “because he’s happy he only has one more week in your class, lady!”  I didn’t bother to respond.

My excitement is tempered with a bit of anxiety, as any mother’s would be.  But I take heart in the fact that those who know him best on this planet agree with me that this will be a good switch for him, and that he can handle it.  Judging by his excitement, I’m fairly certain he will prove us correct.

A New Placement for The Boy

At our reconvened meeting yesterday, the team reached a consensus that The Boy’s needs would best be met through the pilot program at the school across the county!  He and I will visit early next week, and will officially start the Monday of (American) Thanksgiving week, which I hope will give him transition, being a short week.

I have to say that I was intimidated by the number of people that would be there, and I wasn’t sure of everyone’s agendas, but it turned out to be a very positive thing, and a constructive process to arrive at our decision.  Everyone there was really interested in what was best for The Boy, and I was very pleased at the level of conversation.

And for all of the hoping I’ve been doing, I know it won’t be “the answer” to all of our problems and issues.  Indeed, we may have exchanged new ones for the old.  But I truly feel that the depth of knowledge of the special ed staff in regards to autism, the training that the general ed staff has received and continues to receive, and the fact that The Boy has actual friends already at the school will go a lot further towards our goals for him than the program he is currently in.

I’m anxious for him, as it is all another change, and big one (and lots of little ones!), but I’m hopeful.  More hopeful than I’ve been in a long time.

Big Meeting, the Second Time Around

Our rescheduled IEP meeting is today, and let me tell you, I feel so much more prepared this time around.  I am so glad that I was able to call them out on a technicality and give myself some more time to gather my wits and my resources.  Today, I’m bringing our regional rep from the Autism Society in our state.  I’ve talked with her a bunch over the last couple of weeks, and she will be there to advise me, and be an extra pair of ears.

They will still have a passel of personnel in attendance, but they don’t scare me anymore.  I have data from his previous school that supports everything that I say he needs and isn’t getting.  I have documentation in the form of emails from his current teachers that supports everything I say he needs and isn’t getting.  And I have a better understanding of their intentions, as well as the process, and my rights.

And my focus now is on the IEP, even though we will be discussing placement, as well.  He needs and aide, he needs autism-savvy teachers, and he needs help with organization.  Period.  I would like to see him go to a school that is better equipped for his needs, but I’m not as steadfast in that as I was, because I’m not sure I want him in a school where they so obviously are against him being there.  When it comes down to it, no matter where he is placed, we will continue to have a fight on our hands, and now that I know that, I am better prepared to roll with the punches (Inner Biker Chick is present and accounted for, thankyouverymuch).

What a difference a couple of weeks makes.  Let’s ride!

Laura & Margie - biker chicks

Laura & Margie – biker chicks, mslaura

Routines, Item Attachment, and Flare-ups

We almost didn’t make it to school this morning.

new rubber glassesThe Boy had forgotten his (fake) glasses at Grammy’s house last evening, and wanting to head off a last minute meltdown, I told him as soon as he woke up.  I told him we could get them later that day, and that would be alright wouldn’t it?…  I breathed a sigh of relief when he said OK, but it was premature.

Once he was dressed, and it was time to go, he announced that he wasn’t going to school because he couldn’t go without his glasses.

I cajoled, made deals (and a few threats of consequences), and was finally able to get him out the door, a half-hour late.  He wore a pair of reading glasses instead, and I went to Grammy’s, picked up his (fake) glasses, and took them to school for him.

It’s still frustrating, and there are always those moments of indecision – Do I let him stay home?  Do I let him come with me to Grammy’s to pick them up?  Or do I stick to my guns?  What is the goal here?  Today, I think I made the right choice.  I don’t always, but no one is perfect.

I’m also starting to realize that for whatever reason, the glasses offer comfort to him, and that when he has a “flare-up” like this, it is a form of self-advocacy.  He is telling me that he is not as comfortable going to school without them.  And one of the best things I ever learned about autism is this: Behavior is communication.

 

Girls? Already?

One of the challenges we are working on with The Boy and school is organization.  He’s not getting much help at school, and as a result, a few papers are getting misplaced, and assignments will be finished but not turned in for several days.  Every afternoon, I go through The Boy’s backpack and shake my head at all of the things that were supposed to happen and didn’t.

Yesterday, I was going through his planner, and noticed some papers that had been returned from science (with smiley faces on them!), and behind those papers, I saw a piece of loose-leaf notebook paper.  Curious, I pulled it out and looked at it.

“Grillfriend” it said at the top.  I immediately recognized the handwriting and the spelling error…  It was from the girl who has been helping The Boy in his core classes – the one they use as an aide because they haven’t supplied him with one yet.

It went on to list her “mom’s phon” number, her “edres”, and the days she wanted The Boy to call.

I was at my mom’s house when I pulled this out, and remarked to her that The Boy might have a “grillfriend”.  Unbeknownst to me, he had just come into the room and replied, “She wants to be.”

Grammy and I exchanged amused looks – what a great response!  So I asked,”Did she ask you to be her boyfriend, or did she tell you?”

“She asked me.”

“Is she cute?” I asked, smiling.

“Yep!”

“Is she nice?  Well, we know she’s nice because she helps you in your classes.  What did you say?”

No response.

“Did you say anything back to her?  Did you tell her you’d think about it, or did you tell her ‘OK’?”

“I told her ‘OK’.”

All during this conversation, he was smiling, seemed a little embarrassed, but kind of proud – completely typical responses.

I wasn’t expecting this so freakin’ early.  I guess we’ll have to re-read that section of the puberty book to review what’s appropriate, and we’re going to have to talk about how to treat girls. GIRLS!  I’m surprised but also delighted at how The Boy is reacting to all this.  It’s all so stinkin’ cute.

Mama Bear, You’re Not Always Right

Mother Bear with Her CubsI’ve had my share of trials over the past week or so.  Not more stress than I can handle, but more stress dealing with The Boy’s schooling than I’ve had to deal with since he was in preschool.  I’m not sure I handled every day and every communication in the best way possible, but I try to remain respectful, even when I am pretty sure the person with whom I’m conversing wouldn’t know an autistic trait if it hit them in the face.  I don’t mind being the pain-in-the-ass mom who emails daily, because I wouldn’t have to if my son had more verbal communication skills, but he doesn’t.  And if school personnel are not going to offer information, I obviously have to ask for it, respectfully.

I posted the other day on my personal facebook page: “Seriously. Between dealing with the ex and (The Boy’s) school this week, my big-ass Mama Bear is showing – watch out!!”  In my world, “Mama Bear” is this walking-a-fine-line-between-angry-and-composed-mother side of me that rises up, out of protection of The Boy when someone or something is repeatedly threatening his happiness and well-being.

Mama Bear does not come out when someone looks at me funny.

Mama Bear does not come out when the teacher “forgets” to tell me that The Boy left his classroom without permission twice in one day.

Mama Bear does not come out when the ex forgets to call, again.

Because I am not Mama Bear.  And Mama Bear is less effective if it is the face you wear with the people you deal with on a daily basis.  If you ARE Mama Bear, you are being written off as crazy, I guarantee it.  “That crazy mom emailed me again, today…”  “Crazy Mom is in the main office, watch out!”  “Take everything That Crazy Mom says with a grain of salt…”

I follow another autism mom blogger’s facebook page, and she posted about her son’s first day riding the bus today.  A little later, there had apparently been a snafu, because her son had been found “wandering the halls”.  She said she was livid, and the great majority of the commenters were calling “Off with their heads!”  I would never take a situation like this lightly, but I put in my two cents, calling for calm, pointing out that everyone makes mistakes, and got called out for my response by another commenter: “Things should NEVER go wrong with our children.”

Listen, people will make mistakes with our kidsI make mistakes with my kid!  That’s how I learn, that’s how he learns.  Yes, it’s scary when a little one is wandering the halls of school, not knowing where to go because someone screwed up the procedure for drop-off.  And a phone call and/or even a meeting would be in order here to straighten out the situation ASAP.  But do you think that little one might be less scared in a similar situation later on because it has already happened to him and everything turned out OK?  If this happened two or three times, why yes, I would be livid.  But living your life in a constant mode of battle-readiness, expecting perfection from school staff, and wearing that Mama Bear mask whenever you come across someone who looks at you the wrong way is no way to live, and it’s not a good model for our kids.