Tag Archives: ASD

I’m Always Learning About My Own Boy

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At the end of each day, I head to Grammy’s to pick up The Boy.  This is usually a bit of a process involving agreeing on a number of minutes needed before getting ready to go, setting the timer, and then the addition of a couple of extra minutes, because the amount of time that has passed could not possibly be the amount of time we had agreed upon…  When all is said and done, we’re usually on our way in about a half hour, and it takes about 15 minutes to get home.

During this time, I ask about his day, and if I’m lucky, I’ll get some little snippets of information.  We joke and act silly, and generally try to make each other laugh.  Part of the reason The Boy is so relaxed is because he doesn’t have to worry about eye contact, I think.  Regardless, it’s the one time in the day where we have the most connection.

One of The Boy’s obsessions since the beginning of the school year (and the entrance of the new, nicer band director) has been articulating incorrectly on his tuba, and being obnoxiously silly about noises that are not desirable in the band room.  As a former band director, it drives me insane, but I’m doing my best to be patient while we ride this particular obsession out.  When we take this time to be silly together in the car, inevitably, the silliness involves these noises that he thinks are hilarious. During of all of this hilarity today, he was pretending to be the band director, and asked me to “play” a C.  I sang a note (that I thought might be a C), and he very seriously said, “No.  That’s not a C.” It reminded me of when he would use that tone to tell me not to sing (along with the radio), when he was a toddler.  “Don’t sing, Mom.”

Perfect PitchI have a pretty good sense of relative pitch, after almost 20 years doing the band gig.  I was fairly certain that I was at least close to a C when I sang. Then I remembered I have a tuning app on my phone.  I pulled it out, and sure enough, I was wrong.  Then I turned it around on him – if he knew it was wrong, could he sing a pitch if I asked him? “Sing an Eb,” I told him.  He did, in his puberty-addled voice, and I put the phone to my ear and checked… It was right.  “G,” I told him, and he did it.  I tested him several times, and he was able to pick these notes right out of the air!  “Why are you looking at me like that?” he finally asked.  “Because you are blowing my mind!” I said.

When we got home, we sat down to the piano and repeated the process. As a result, I am fairly certain The Boy has perfect pitch, which is an extremely rare auditory skill.  I had always known he had a great sense of music, and a damn-good sense of relative pitch.  I even wondered at a few points over the years if it was something more, but never until today have I been this close to certain.

It may amount to nothing.  It may not be something of which he ever wants to take advantage.  But if he does, I want to nurture it if I can, even more than I have his general music ability.  I’m amazed at the depth of The Boy’s talents, and I’m amazed at how much I am still learning about him. He’s simply amazing.

How Do You Know?

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I saw a tshirt advertised on facebook the other day that read in big block letters, “I AM A MOM OF A CHILD WITH AUTISM,” and I thought, “Hm.  Don’t need that!” And then I thought about how quickly I assumed others know that about me, about us, about The Boy.

The Boy doesn’t flap much, doesn’t stim much when we’re out and about.  He saves it primarily for when he takes long walks outside, back and forth either in front of our house, or in front of Grammy’s.  Sometimes, he does it in his room, or from the kitchen to his room.  His stimming looks like an uncoordinated gallop with a sound like a voice-cracking “giggle” that could attract some stares from the un-initiated.  But I can’t recall seeing him do this at the grocery store or at a restaurant, where others may have cause to stare.

I’ll tell you when they do know.  They know about 2 seconds after they ask him a direct question.  They know when he bumps into them and keeps right on walking.  They know when he walks directly between two people that are together.

Every once in awhile, we come across some old, uppity lady who takes affront, but in general people don’t do much more than notice and go about their own lives.  So no, I don’t need a T-shirt.  Whatever people may assume, or learn after a brief encounter with us – it doesn’t much matter to me. As long as they are tolerant and kind, the rest doesn’t matter.  The tolerance and kindness will not be created by a T-shirt, but through hard work, writing, speaking, spreading the word, creating as many programs for NT kids about acceptance as there are for spectrum kids about how to fit in, volunteering, and sharing, sharing, sharing… That begins with us. Ready?

Book Club Discussion: The Reason I Jump, “Never-Ending Summer” Part I

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reasonIt’s been quite a while, but I’m continuing the discussion here today because The Reason I Jump is an important book.  Naoki Hagashida, at age 13, answered questions about autism from his viewpoint, and while his experiences are not the same as probably anyone else’s on the spectrum, his thoughts provide insight, and provoke thought, neither of which can be bad for those of us who desperately want a glimpse into the minds of our children.

When asked (Q25) Why he jumps (or stims), Naoki says that those on the spectrum “react physically” to emotions, and that their bodies at that point do not allow them to move as they wish.  Jumping allows him to shake “loose the ropes that are tying up my body.” This is an interesting perspective and while it goes along with the accepted understanding that stimming “feels good,” it adds a piece that wasn’t there before – it feels good because it is an attempt to free oneself from a body that doesn’t react exactly the way one wants it to.

Question 27 asks Naoki why he covers his ears.  He explains that it isn’t the volume, but rather that the multiple noises become disorienting and scary.  Covering his ears restores his sense of where he is, and allows him some control over his surroundings.  I think we often forget what a struggle it is for many of our kiddos on the spectrum to process sensory information that has absolutely no effect on us neurotypicals.  Add that to my list of basics I tend to forget!

In his answer to Question 28, Naoki reaffirms that many on the spectrum have no sense of where their limbs begin and end, and that results in awkward movements and the inability to know when he’s even stepped on another person’s foot.  This is why I think The Boy loves water as much as he does, because it provides that constant sensory input to let him know where he begins and ends.

Question 31 deals with eating and why some on the spectrum are “picky.” Naoki says he doesn’t really have this issue, but understands that for those that do, “only those foodstuffs they can already think of as food have any taste.”  Everything else, i.e. new foods, are received as play-food that doesn’t sound too tasty.  He hypothesizes that it may just take more time for them to “appreciate” the taste of unfamiliar foods.  This explains a lot. Often, if I can draw a connection from one food that The Boy likes to eat to another unfamiliar food, he is more willing to try it, and this explanation is a pretty good one, I think.

There are a few more questions in this section that I will tackle next.  This is one of those books that is great to read, and re-read again and again, as you’ll pick up something new each time, I think.

Posting Embarrassing Stuff About Our Kids on the Spectrum

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So many times I see something on Facebook or twitter, and without me realizing it, it starts me thinking. Thinking leads to writing, and then when I want to refer back to what triggered the thinking, I have no idea where it is, was, or will be.  I apologize for that because I feel I should link back to the source, and if I find it, I will. Sometimes I wonder if its better not to include it, because I don’t want to criticize anyone in particular, just highlight my take on it…

The other day, someone posted on Facebook about how we autism bloggers have a responsibility to our kiddos not to post embarrassing stuff about them on our blogs.  Things their friends may read, things no one would really want posted on the world-wide inter webs for everyone to see.  This is what started me thinking.

This person pointed out the distinction that some blogs take great pains to mask the identity of their kiddo, as I feel I do.  No clear pictures of faces, no names, no locations.  There are people who know The Boy directly who read this blog, but they are all adults who care about him as a person, and would never think differently about him no matter what I posted.

I did a mental review of the types of things I post and could only come up with a handful that might be considered embarrassing for The Boy. And I started to feel a little guilty despite the fact that none of his friends would be able to know this blog was about him.

As long as his identity is a secret, he can do anything!

But I thought some more.  Mostly about why I started this blog in the first place.  It really is astounding when you hear people’s stories about getting “The Diagnosis” – in every single one I have ever read or heard, they felt like they were handed the information and ushered to the door with a “Have a nice day!” and a door slammed in their face.  This is apparently still a problem.  People are given this life-altering information and no help.  I started this blog to share my experiences, so that we could navigate this thing called autism together, so that there would be somewhere someone could go to find out more than what’s in the pamphlet you’re handed as the psychologist turns to the next patient to diagnose.

And some of that stuff is embarrassing.  Our kiddos have deficits in areas neuro-typical kids don’t have to worry about – potty training until 5, or 7, or 12, not knowing bathroom etiquette, puberty… Yes, it’s not stuff a typical kid would like plastered all of the web.  But you have to balance that with the community’s need for strategies, their need to share, their need to brainstorm.

I hope I can walk that tightrope of sharing without invading my son’s privacy.  After all, I am his mom, and capable of making lots of decisions about his life.  As he grows older, I do need to get out of the way and let him advocate for himself and have some independence, but in this case, I think he would be all for helping someone else like him who was struggling, as long as I continue to maintain his anonymity.

This is a grey area for sure. And I may not be right, but it’s the best decision I can make with the information and values I have at my disposal.  Thoughts?

Mornings Suck in Autism Households

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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*

Life Gets In the Way

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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

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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??

Shared here at Mama Moments Mondays – check it out!

Helpless and Dumb

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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

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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.