On-Again, Off-Again Dad

The ex has called a couple of times over the past month or so, after a couple of months of not calling. He said, “I get him for Christmas this year, right?” Ummm, ok. So after making use of your liberal visitation schedule for two weeks out of the last 104, you want to stake your claim? Sure. Yes, you actually are supposed to have him starting on Christmas Eve, as it is an odd year. “I’ll try to get some time off, then,” he said. Sure, I thought.  Like last Christmas.

He called once more, spoke to The Boy only for a little while, and that was the last we heard anything about Christmas.  The Boy’s birthday was Wednesday, and his mom had sent gifts, one from her, and one from his dad. Her card said they were looking forward to seeing him at Christmas.  But the ex didn’t even call his son on his birthday.

What?

My mom told me that recently, she and The Boy were at Walmart and he said he really hoped he’d get to see his dad at Christmas, because he hadn’t seen him since April.  Yes, it hurts him more than he’ll admit to me, and yes, he does keep track.

As The Man says, kids are only young once. He’s going to miss it completely.

Angry for The Boy and pity for the ex. And partly angry for me too, really, because I have my own life and family that will be affected by his inadequacy. But mostly angry for The Boy.

Life Gets In the Way

I wish I had a better excuse for not blogging. I wish I could say I won NaNoWriMo this year.  Unfortunately, life gets in the way sometimes, and, well, we’ve been having a rough go of it lately, behaviorally. It’s hard to write when you have no idea what is going on with your kid. It becomes harder to find time when you struggle to get him to do any homework at all, and really homework is torture for you, as well, and you just need some downtime.

But I’m not one for excuses, except to say that it is what it is. I have missed blogging, and it is something I need to do for my own well-being. Ergo, it shall be done. I may not write every day, but I will write, and I just hope that there are a few of you still out there to read it. If not, that’s ok, too.

Be prepared, though. I’m not going to sugarcoat it. Puberty + Autism = Nothing for the faint of heart. I sure hope puberty is the culprit here, because if this isn’t temporary and transitional… I’m not sure I’ll make it.

Thanks for sticking by me. I’m back on the wagon again.

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…

The Cat Stays

A few weeks ago, I posted that we were probably going to have to re-home the cat we rescued due to my allergies.  Much to The Boy’s delight, we have decided to hang on to Raphael.  As long as I am careful about washing my hands, and as long as we manage the cleanliness of the place, my allergies seem to be held at bay.  He is still a very sweet kitty, and The Boy has stepped up, all on his own initiative, feeding Raphael without being asked.  I’d love to see him get to a point where he can help with the litter, too, but mornings are already crazy, and baby steps are still progress.

Raphael is an older cat, but still fairly frisky, and loves the hot pink wand toy The Boy bought for him at the dollar store more than any other toy we have purchased.  He also likes to hang out in The Boy’s room, and has stopped yowling at night.  The Man is still his favorite, but I think I may be winning him over…

cuddler