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…

Sleepovers: Spectrum Style

Last Saturday, we invited The Boy’s best friend over for a sleepover.  He is on the spectrum, too, and is in The Boy’s program at school.  They get along really well together, share the same interests, and this boy just seems to get it when The Boy doesn’t answer a question or doesn’t want to do the same thing he does.

The two spent the morning at our Autism Society’s chapter’s “Friends and Fun” party, during which everyone who celebrates a birthday for that month gets to come to a church youth group center and hang out for a couple of hours.  Presents are given by the chapter, and there’re cupcakes, so it is a great way for the kids to get together without the pressure of a formal birthday party (and figuring out whom to invite).

Then I picked them up and brought them to the beach trailer that The Man and I are renovating… Have I told y’all about that?  Not yet?  Another post entirely…

They waited patiently while I put in a new window…

window work

And then The Man, the boys and I walked over to McDonald’s for some lunch and some much needed sweet tea.

Next, I drove the boys up the way a bit to a bowling alley that we had heard also had an arcade.  After getting lost twice (thank you, iPhone!), we found the place and proceeded to spend quarters on slightly beat up machines that didn’t always give us tickets.  The boys had a great time playing foosball and air hockey, and ended up with some fantastic plastic slinky bracelets that promptly broke within the next half hour.  But it was fun ;)

foosball

We stopped at Target to see if the Halloween costumes were out yet, which they weren’t, but we had a good time poking around the legos and stuff, and they were patient with me while I poked around in the office supplies, ogling washi tape.  We picked up a couple of toys for Raphael, too.

On the way back home, we stopped at a Halloween superstore, as The Boy’s friend seems to have an obsession with Halloween and the haunted house he and his parents create in their garage every year.  This superstore actually had a small haunted house setup through which you HAD to walk to get into the store.  The Boy’s friend seemed to like it and be scared by it at the same time, while The Boy was just scared.  We checked out the costumes, and I think The Boy was most traumatized by the fake boobs in one of the aisles.

We headed back to the beach trailer to see The Man’s progress and then headed over to one of the piers with a restaurant (and a great view), ate dinner, and walked out on the pier after dark.

pier at dusk

We headed home and let the boys do their thing with DSs and iPads and computers – oh my!  As The Man and I headed to bed rather early – he tired from the physical work of putting in new sub-floor by himself, and me tired from entertaining two preteens for the past 9 hours.

Let’s just say I’m glad it doesn’t happen every weekend, but I am SO glad The Boy has a friend to be able to do this with.  It’s a small slice of normal for him, and he loves it.

A Wonderful Visit

This post was drafted in August and I realized I hadn’t posted it yet.  :)

___

Our one and only Fantastic Babysitter (and her mom and baby) came to visit this past week.  She sacrificed a lot to come, and The Boy was so pleased to have her here, as was I.  We spent a long day at the beach, and worked around the baby’s schedule with relatively little problem, able to eat out a few times, and experience the area, thanks to some wonderful weather.

We walked out on the long fishing pier that extends out to the ocean, and Fantastic Babysitter, being afraid of heights, began to get a little nervous, expressing a wish for a hand to hold as she progressed over the beach and then over the waves.  The Boy slipped up behind her and picked up her hand, impressing everyone with his empathy and sensitivity.

Later, he sat on the couch next to me, and we held the baby.  He began to play with her feet, saying softly, “I’ve got your tootsies,” and then “Am I doing it right?” to me.

I watched him as he took every opportunity to sit next to Fantastic Babysitter, sometimes putting his head on her shoulder, recognizing the beautiful relationship they continue to have, even across the miles.

I was so happy to see them together, and was truly sad to see them go.  On their first night here, he began begging to go “back home,” and I realized that we may have to make that a reality before too long.  A visit next summer may be in order, because there are lots of people there he misses, and some I miss, as well.  We have been so happy here, but this visit brought some strong feelings to the surface, especially on his part.  And I don’t want to ignore those.