Mornings Suck in Autism Households

That is my theory based on the anecdotal evidence I have encountered.  Maybe not for everyone, but for a lot of people I know that have loved ones on the spectrum.

One morning this week, everything was running along splendidly until I suggested to The Boy that it might be a jacket day as it was below 50 degrees.  No problem!  Yes, he agreed.  A jacket was a good idea.

And then we got to the couch, the time to put on socks and shoes, and wait for the bus.  And the bus was early, and The Boy couldn’t find his hat.  And there was NO WAY he was going to school without his hat…

Add in the stray kitten who had hung outside of the house since the previous evening, meowing away – he was trying to get in while I was marching out to the bus in my robe and slippers to plead for a few more minutes, and Raphael was anxious to get out because he always is, and because he was very curious about this kitten.  Add all of that to The (intransigent) Boy stuffing his feet, face, and hands into the couch cushions to ensure he couldn’t go to school without his hat.

Finally, he’s out the door, but not without a stream of under-the-breath curses about hats and school and buses.  I climb back into bed, and The Man says, “Maybe you should set that stuff out the night before.”

(Can you imagine the dark look?)

Yep.  Mornings suck.

 

PS – Guess where the hat was?  Right next to his bed.  *facepalm*

An Open Letter to the Ex

Our son is thirteen now. I wonder if you are shocked by how much he has grown every time you see him. The last time it had been over a year. This time, eight months. I know he’s grown because I have to buy him new pants for every band concert. The size 18’s from last spring were way too short last week so we bought some 29/30’s. I wonder if headlines with autism catch your eye, or if you’ve ever read anything about it. I wonder if you remember anything from the year and a half between the diagnosis and when you left. I wonder how you spend time with him when he’s with you – do you try to connect or do you just coexist? Feeling a little schadenfreude as I hope you experience some of the pubescent rage we have witnessed this fall. But not too much because I wonder if you could handle it, and know I’d rather not find out. In a few years we will have been divorced longer than we were married and the boy will have lived longer without you than with you. That should scare the bejesus out of you, but it doesn’t seem to even register on your radar. Shocking to realize his speech teacher at his school last year who saw him once a week spent more time with him than you have in the last year, and knows him infinitely more than you do.

I wonder a lot, but it isn’t my place to know. That’s between you and him. The question I will never get an answer to is how. How do you live without him?

So I shake my head, sigh, give him to you for Christmas and cross my fingers. This never gets easier.

What Stress Does to Me

I’ve mentioned how stressful the fall has been.  Know what happens when I get stressed?

First is my back-shoulders-neck-head. Mostly shoulders-neck-head. Tension-soreness-headaches-migraines happen to my shoulders-neck-head.  It can get bad, where I need to consciously lie on back at night (normally, I’m a side sleeper, curled into a fetal position), take too much tension headache medicine, be in a darkened quiet room, etc.

Second is my stomach.  Polite way of saying I need to run to the bathroom every two seconds.  Again, not fun, but uncontrollable, and a sure sign that something (or someone) has me stressed out.

Third, I begin to shake.  Somewhere between a shiver and a quake. Deep breaths help, but again, it’s uncontrollable.

All the while, I worry it, shake it like a rag doll in my brain.  In other words, I get a bit obsessive about whatever or whoever it is in my brain, and I can’t let go.  Probably one of the reasons, “Don’t worry about it,” sounds just as awful as nails on a chalkboard to me. It’s just not even practical, not even a realistic goal. Shut up.

Why do I know this much about how stress affects me physically? Because I was a teacher for over 17 years.  No, that was not a sarcastic answer. It’s the truth. And I’ve paid attention to my own body.

What helps alleviate some of these? Regular yoga (oops, need to get back on that wagon, too). Me-time. Deep breathing (goes along with the yoga). A massage now and then. Reading (to some extent). Being able to vent to someone about my source of stress (but not too much, because that can get me ramped up again). And a realization that This Too Shall Pass. I forget that a lot. Maybe I should get it tattooed somewhere I’ll see it all the time.

What does stress do to you? What do you do to alleviate it?

The Formula

More and more, this school year, I am wondering what the heck The Boy is communicating through all of this behavior.  My sweet little boy is refusing to do work, refusing to go to class, refusing to go to school… like someone has flipped a switch. When we experience a negative behavior (i.e. when all hell breaks loose), after the initial shock (Who is that demon child and where did he put my son?), I am left to figure.

Autism parents are familiar with this. Determine the trigger and try to eliminate or decrease it so you can better manage the fallout, and predict when it might happen again.

Except when you cannot for the life of you figure out the trigger.  Could it be puberty? That magical ingredient that changes body chemistry and is our current prime suspect? Is it medication that needs tweaking? Is it a virus, which always makes The Boy’s behavior completely wonky? Is it someone at school making fun of him? Is it a teacher? Is it..? Is it..?

We are trying to take this thing and try to determine its formula, its ingredients. And it’s a difficult, difficult thing.

 

Who are you and what have you done with The Boy??

Who are you and what have you done with The Boy??

Helpless and Dumb

Whenever I was sick as a child, my mom would say, “I hate it when you’re sick,” and I never truly understood the depth of that until I had my own child.  Today, I looked at The Boy and said, “I hate it when you’re upset,” and burst into tears.  “Why are you crying, Mom?” he asked.

I cry because I’m helpless and I know nothing.  I had to come and pick you up at school today because you wouldn’t go to class, and then tried to escape school.  I don’t know why.  No one does, and when we ask you, you start talking about your bus driver from last year, and how he must have retired because he doesn’t come to pick you up anymore. You talk about not going back to school until next week, or returning to that other middle school you went to for a quarter last year until I screamed enough to get you into a better one, the one you go to now.

I cry because I don’t understand your motivations, and I just want to make it better and easier for you.  Can we clarify the bus rules for you?  Let’s make a checklist so you don’t forget your band binder again. How can I make it better?  And I get no answer.

I cry because you are my only son, and I can’t see past this very day for you.  I hope I can get you on the bus tomorrow, but I don’t know if you will go.  I don’t know what will happen then.  I don’t even know if I will be able to return to work later today, if you will be able to calm down, if we will be able to come up with a reasonable plan to get you back to school and going to class.

I cry because there are no answers.  All of us autism parents just throw stuff onto the wall to see if it sticks every damn day.  Some of it sticks, and a whole hell of a lot of it doesn’t and you go back to the drawing board.  If I had a dollar for every time I said or thought “I don’t know what to do…”

All I can do is rely on experience, try, try, try, and hope, hope, hope.  But in the meantime, I hate it when he’s upset. :(

Being Put Through My Paces

A meeting is scheduled.  With The Boy’s teachers.  Not yet an official IEP meeting, just an I’m-so-sick-of-you-not-knowing-what-you’re-doing meeting.  Nah, I won’t really say that.  But I do have dreams, yes DREAMS about running an inservice, actual PROFESSIONAL DEVELOPMENT for these teachers, and not just about how to effectively approach a student and his/her IEP, but about basic things like GRADING and ASSESSMENTS.

I was a decent teacher.  I don’t claim to have been the best teacher at the school where I worked, not by a long shot.  But I did know a thing or two about exactly how assessments (quizzes, tests, and projects to a normal person) are supposed to work, and how to effectively use and fairly grade those assessments, skills that The Boy’s teachers apparently haven’t yet mastered.

A 65/100 on a quiz with 10 multiple choice questions just doesn’t compute…

quiz

I guess I was spoiled by the staff I worked with.  We didn’t have to argue very long that grading a kid on effort just wasn’t fair to anyone, and definitely watered-down the picture of whether or not the student knew the content.  We didn’t have differing opinions on how much quizzes, tests, and projects should be worth — assignments and quizzes should rarely be worth more than 25 points or so, and tests and projects were usually between 50 and 100.  Assignments and quizzes, we agreed, showed how well the teacher was teaching the content (formative assessments), while tests and projects showed how well the student had learned the content (summative assessments).  To me, this is TEACHING 101.  Fellow teachers, Amiright?

This reminds me of the meeting I had at The Boy’s previous school where they thought the use of rubrics was such a novel idea… “We don’t really use those…” they said… (I was taught to use rubrics in my teaching in TEACHER COLLEGE in the 1990s… 20 years ago…).

My challenge is to attend this meeting and not come off as this know-it-all mom telling them how to do their jobs.  My challenge is gently nudge them towards doing their jobs without them realizing that I’m telling them how to do their jobs.

Time to get clever.

Peer to Peer: How to Make Sure Pranks on Kids with Autism Don’t Happen

There are too many stories of horrific acts done to kids on the spectrum these days.  The ice bucket challenge “prank” in Ohio, the boy in Pittsburgh duct-taped to a soccer goal… Targeted hate crimes if you ask me.  I’m appalled that schools and law enforcement seem to be utterly reactive in these situations, as well.  Taking plenty of time to “investigate” while handing down weak “discipline”.  It is so utterly disheartening to read about these attacks.

What I know is that the chances of that type of thing happening in the district where The Boy went to school from kindergarten through 5th grade were  and are slim to none.  Why?  Because they were proactive.  When they created an autism program, they also created a program for the neurotypical students that would be encountering this population in their classrooms.

In The Boy’s case, it started as “Grub Club” where the kids in the ASD program were able to go out into the community for lunch once a month and invite an NT student/friend.  The kids in the spectrum get real practice using social skills, and the NT kids get to know the ASD kids as real people, away from the peer pressure.

Grub Club morphed into the LINKS program (more info here), and by the time The Boy was in 5th grade, almost the entire 5th grade class had signed up to be a LINK.  They received special “training” and volunteered to buddy up with their ASD friends in class on projects.  When I watched The Boy and his classmates, they never hesitated to help him find where to go at the choir concert, and never refused a birthday party invitation.

friends

You can’t expect neurotypical kids to know how to deal with kids on the spectrum.  You can hope their families have given them some good training on how to treat other human beings, but sadly, this is not even the case the majority of the time.  If you are going to teach my kid with autism how to react to the neurotypical world, you had better also be teaching those NT kids how to deal with my kid with autism.  When you don’t, you are missing teaching lessons as important as anything in the Common Core.  And maybe your district will be the next one on the national news, dealing with some horrific act perpetrated by your students who were never taught these important life lessons.

Another Autism Speaks Post

IMG_2297The other day, while on twitter, someone began to tweet to me about how I needed to boycott Autism Speaks.  I replied that I don’t outwardly support them, nor do I decry them.  That person went on to try to “teach” me about Autism Speaks and how detrimental they were to those on the spectrum.  I replied that I didn’t agree with the way their message is being communicated, but that they have the funding and national recognition to be able to get some much needed research done.  This person then suggested several other autism groups which were much more deserving of my time (didn’t I already explain that I neither support nor boycott Autism Speaks?  What time is it that I am giving to them?) and insisted that these groups also do research.

The following is a list of groups that this person suggested.  I was already familiar with some, in fact already support and follow several on twitter and FaceBook.  There are others on this list that seem a little less organized, and some that I don’t necessarily support.  Not one of them, however, does the type of scientific research that Autism Speaks sponsors.

Let me be plain.  I do not support the notion that autism is a disease.  I do not support the notion that it needs to be cured in any way.  I do not support the notion that autism is a bad thing.  I think Autism Speaks muddies their own message, vision, purpose and intent with some of the inflammatory statements that their founders have made.  For these reasons, I do not raise money for Autism Speaks, nor do I publicly support them in any way, other than to follow them on twitter and FaceBook.  I do share certain articles posted by Autism Speaks that I think are helpful to those on the spectrum, and to families affected by autism.  And I do not “boycott” or publicly denounce them because I feel that the types of research that they sponsor are necessary, and no one else can even come close to the scope of that research.  In short, I think they serve a purpose, but I will not actively support them until they get clear on their message, vision, purpose, and intent.

I respect those with opinions differing from mine until you give me a reason not to.  I don’t enjoy being needled by someone who assumes I have made an uneducated decision.  I don’t enjoy it when someone assumes I support Autism Speaks because I respond to someone else’s tweet to Autism Speaks.

Feel free to check out any of these groups, as suggested by @imwithduke and see what conclusions you come up with.

goldenhatfoundation.org

autismcouncil.org

autismparentingmagazine.com

grasp.org

autismhwy.com

autismnow.org

autism-society.org

autismwomensnetwork.org

autisticadvocacy.org

It never hurts to do your own research and figure out just where you stand.  No nonprofit can serve the needs of all members of the community it purports to serve.  Sometimes you have to take the good with the bad for a time, and see what shakes out.  Do the research, and make an informed decision.  Respect those with differing views until they give you a good reason not to.

 

 

There Always Has to be One

It seems that every year, there is one teacher who just doesn’t get it.

I am overwhelmed by the amount of homework in The Boy’s science class this year, and it is supposedly being modified for him. This teacher refuses to give us study guides, insisting they are only made available for tests and not for quizzes.  However the quizzes cover an entire chapter and 40 slides from the PowerPoint they use in class.  What is assigned isn’t being communicated correctly in the planner, or conflicts with what is sent home via email.

I’ve been trying to communicate all of this to The Boy’s special education teacher, and she is doing her best, but she can’t control the general ed teacher and I don’t expect her to.  It’s just frustrating that yet again, I find myself providing the modifications for my son, and it’s just not my job.

modifications

This same teacher tried to “explain” to me in an email that he “grades on effort” because he knows that some students “struggle” more than others. Wrong thing to say to me. It offends me as a special needs mom, and it offends me as a former teacher.  There is nothing right with that statement.  I just have to figure out how much fight I have in me right now, and then I’ll figure out what to do next…