Did You Know? I Turned the Big 4-0…

And it wasn’t easy.  40 was tough for me to celebrate because it somehow seems so adult, so “sunset years,” and I still don’t feel like an adult, let alone middle-aged.  Now, this happened in October, so why am I wiring about it now?  Sometimes it takes things awhile to process – go figure!

  • When my mom was this age, she had a six year old.  How in the hell she did that, I will never know, because if I had to be chasing around a first grader right now?… I just don’t know…
  • When my grandpa was this age, my dad wasn’t even born yet.  Different times back then, but still… YIKES.
  • The Boy is now a teenager (technically, and physically.  Even a little mentally, too).  He will have turned 20 by the time I “graduate” to the next decade… YIKES.
  • The Man will be in his 60s by that same time… YIKES.
  • Half a lifetime ago, I was in college.
  • I have been a mom for as long as I was in public school.

All of this adds up to me feeling much more mortal, and it’s not an easy feeling. Couple that with feeling more aches and pains than I used to, an amazing ability to put on weight, and getting tired more easily, and I wonder sometimes how much longer I have.

But The Man is happy that, at least for the next few years, we are in neighboring decades.  And when I’m with him, I don’t worry too much about how old I am. :)

Teachers: Please Educate Yourselves about IEPs and the Law

School LawLet me preface this by saying that I know the struggles faced by teachers everyday.  I understand the Sisyphean nature of the job, and that it is almost impossible to stay on top of all of the various responsibilities. When I taught, I quickly learned to prioritize those responsibilities, putting the ones that directly impacted kids at the very top.

Knowing your responsibilities to your special education students, and the legal ramifications if those responsibilities aren’t met should be one of your top priorities.

If you’ve followed Simple. I Just Do for awhile, you know that we encountered teachers at the beginning of The Boy’s 6th grade year who acted as if they had never had an autistic students in their classrooms before.  I had to become “that mom” just to ensure that The Boy was receiving the very basic modifications and accommodations.  Truthfully, his IEP was being violated on a daily basis.  Comments from teachers during that time included:

  • “He refused to take the test, so I gave him a zero”
  • “He doesn’t do any work in my room, so he needs to be in the special ed room during my class”
  • “He should take the test the same day as the rest of the class because we have other lessons that he would miss out on”
  • “If he doesn’t understand something, I don’t know how to help him because he won’t tell me what he doesn’t understand”

I have also found that classroom teachers in this state do not modify assignments themselves, most likely because they do not know how.  Somehow, providing these modifications is the responsibility of the special education teacher.  This was not the case in my training and experience up north.

Here’s the thing.  You, as a teacher, can be sued (and possibly have to pay damages out of your own pocket) for not following the IEP, and claiming ignorance will not be a sufficient defense.  Claiming that the special ed teacher didn’t make the modifications for you will not be a sufficient defense. You are responsible for knowing the law (IDEA and ADA, for starters), and for following it, by providing each student’s appropriate modifications.

This past week, I had to be “that mom” again, and send several emails to remind three different teachers about the modifications The Boy is supposed to be receiving.  In one response, from the band director, he mentioned that he was “willing to let (The Boy) play for” the band festival performance that same week, but that he did “not want him to participate in the sight reading portion.”

The Boy has a right to access the same curriculum as his peers, therefore he has a right to participate in both the band festival and the sight reading portion.  And it is the band director’s responsibility to know that.

Why I Make “Homemade” Lunchables

I’ve been making homemade lunchables for awhile now.  At first, I hesitated to do it myself because many times, as those of you with kiddos on the spectrum well know, even slight changes to foods can make them “inedible.” This can include packaging, and many times The Boy notices things about food that I do not, so there could be textures that are slightly different between a store-bought and homemade lunchable.  I don’t rightly know, because I’m not a big lunchmeat fan, myself.  But luckily, The Boy didn’t seem to care that what I put together myself came in a green plastic (re-usable) box, rather than a bright yellow cardboard box.

Here’s why I decided to try it.  Lunchables run $2.74 right now at my local grocery store.  $2.74 times 5 days per week equals $14.62 including tax (in our state).

Purchasing the parts myself, and putting in a little prep breaks down like this:

Ingredient Costs include:

Hormel Pepperoni, 84 slices, $2.98 (enough for 14 lunchables = $0.21 per lunchable)

Generic Mozarella Cheese Slices, 12 slices, $2.74 (enough for 12 lunchables = $0.23 per lunchable)

Ritz Crackers, 120 crackers, $2.50 (enough for 20 lunchables = $0.13 per lunchable)

Capri Suns, 10 puches, $2.98 (enough for 10 lunchables = $0.30 per lunchable) *note: I upgrade to the 100% juice version*

This adds up to $0.87 per lunchable, times 5 days equals $4.64 including tax.

I save about 10 bucks a week.

I don’t contribute quite as much trash as a lunchable (I encourage The Boy to return the baggies and re-use them).

I don’t send in any candy or sweet treat, which is always included in the lunchable.

We have also done turkey and american cheese, which breaks down like this:

Ingredient Costs include:

Turkey, 16 slices, $2.78 (enough for 16 lunchables = $0.17 per lunchable)

Generic American Cheese Slices, 16 slices, $2.88 (enough for 16 lunchables = $0.18 per lunchable)

Ritz Crackers, 120 crackers, $2.50 (enough for 20 lunchables = $0.13 per lunchable)

Capri Suns, 10 puches, $2.98 (enough for 10 lunchables = $0.30 per lunchable) *note: I upgrade to the 100% juice version*

This adds up to $0.78 per lunchable, times 5 days equals $4.16 including tax.

Maybe there are people out there who want to spend an extra 10 bucks so that they don’t have to pack a lunch, but I think I’ll put in the effort.  And here’s some other cool stuff about doing it this way:

  • You can get a week’s or a month’s done all in one shot and refrigerate/freeze them
  • You can freeze the ingredients in between packings, so that they don’t go bad
  • It takes me about 10 minutes to pack a week’s worth of lunches all in one shot
  • If you get your kiddo to help you, they are learning skills for independence

To me, it’s a no-brainer, and worth a shot if you have’t done something like this.  We have recently upgraded to 8 cracker/pepperoni/cheese square combos per lunch, because The Boy is growing after all.  I also include a fruit cup, which Lunchables conveniently leave out.  But I think it’s a pretty healthy lunch for less than a dollar a day.

5 Ways Those that Diagnose Autism Could Better Help Families

If you read any narratives or stories about how children or adults have been diagnosed, you will begin to detect a pattern.  And it’s not a good one.  “Your child has autism.  Have a nice day, and don’t forget to pay the lady on your way out.” The Boy was diagnosed eight years ago, and unfortunately, this pattern does not seem to have evolved at all over that time.  It’s absolutely criminal.

In order to get a bona fide diagnosis (one that will qualify your child for an IEP), you must see a certain type of mental health professional.  Psychologists are doctors, too, and I don’t understand how sending someone off with a diagnosis and little else is aiding anyone’s mental health.  Because there are only certain professionals in any community that can even provide this diagnosis, I suggest that they could be doing so much more, in collaboration with the people and groups that can actually provide services that will help a family navigate a diagnosis of autism.

  1. The Psychologists and doctors who provide these diagnoses need to form a relationship with the local schools, and there needs to be a liaison from the school district that is willing to be the point of contact for parents with questions about how a diagnosis of autism will affect their son or daughter’s schooling.  It is not sufficient to have a list of names and phone numbers on a piece of paper to hand to people, but rather a name and phone number (lists are intimidating and unreal, while a single name is much easier to humanize), and an assurance that this person will be contacting them to see if they need help.  Don’t put the burden on the parent who has never even contemplated some of the next steps.  Put it on the professionals who are in a position to help.
  2. In many states, a student is automatically placed on a social worker’s caseload when the team develops an IEP.  A social worker should also be a point of contact as soon as a child is diagnosed.  Too often, parents not only need information, but they need help processing the diagnosis themselves, and understanding what it will mean for their lives, both short and long term.  There are also inevitably parents who will be in denial, as well.  Having a community of professionals reaching out to you, providing support and information can only help.
  3. The psychologist should also provide more than a pamphlet or business card with the local Autism Society’s number on it.  Again, there should be a liaison from the local chapter of the Autism Society who offers to mentor parents, and again reaches out to the family, even if they don’t make the phone call themselves.
  4. When The Boy was born, the hospital put together a “parenting” group of several families who had had a first child around the same time, run by a more experienced, volunteer set of parents who would host monthly meetings on topics that are commonly on brand new parents’ minds.  Why not form a similar support group for parents of children who are all diagnosed around the same time?  Just like those with brand new babies and no instruction book, parents of kiddos on the spectrum are just as bewildered, and to have a group of other parents who are going through the same things would mean a world of support to these folks.  If our hospital could put it together for new parents, I don’t see why mental health professionals who diagnosis spectrum disorders couldn’t do the same.
  5. Parents should also be connected with an advocate, even if the child is still a toddler.  While it is a great idea to have a personal connection to the school system, one has to remember that schools don’t have much money, and if they can save money by not offering a service, they will.  Indeed many times, parents aren’t even aware of the types of services schools can and should provide.  I worked for a school district that encouraged its special education teachers to gloss over any mention of extended school year services (ESY) during IEPs, and as a result didn’t run any type of an ESY program.  A personal connection to an advocate will begin the process of educating the parents about their own child’s educational needs, sometimes in spite of what the school may say they need.

I think we have found that it really does take a village to raise a child, even more so a child on the spectrum.  Why do we continue to make every parent with a newly diagnosed kiddo re-create the wheel?  The trails left by those who have gone before are there – I know because we made them.  But they need guides to find them, and it begins with the conversation that happens immediately after the psychologist says, “He has autism.” Maybe there are some health professionals already doing this.  I sure hope so.  If their aim is to truly help those in need, one would think they would have already thought of these ways of connecting with others in the community who can provide a support network – ready guides to help parents of the newly diagnosed to find the paths blazed by those of us who have already done it the hard way.

Benefits of Being Married to an Older Man

The Man turns another year older today.  Last week, he commented, “I’ll be able to collect social security in another 4 years, and you have to wait another 20 plus!” I almost threw the pillow at him.  But this is a rare occurrence when our age difference really comes up. OK, it also comes up when we tend to settle on the 70s XM radio station in the car… but besides that. ;)

We’re almost two years married, and past five years together, and the age difference just hasn’t been a big deal like he thought it might be in the beginning.  Sure it’s irritating when he gets mistaken for my dad, but I think it’s happened maybe three times in those five years.  Like I told him, that won’t happen for too much longer, because men like him seem to stay the same age, almost impossible for a woman.

Mine is young at heart.  He doesn’t act his age, by any means, and anyone who knows him will attest to that.  And although his body has begun to give inklings of not being what it once was (i.e. after a day of hard, laborious work, he may complain that he isn’t 25 anymore…  Nope, you’re not even 52 anymore!), he still runs around with the neighborhood kids, still has wrestling matches on the futon cushion with The Boy, and still surfs for hours on end in the summer.  We just hiked the dunes at the state park this morning!

Mine knows himself quite well.  He knows how stubborn and pig-headed he can be, and is quick to apologize for it.  He knows his “triggers” and can give me a heads up if the kitchen counter is getting too cluttered for him before it becomes an issue.  He can read me like a book, too, and knows before I even say anything that I’m upset.  Having experience in relationships can be a good thing, if he’s learned his lessons well.

Mine is responsible.  I don’t need to worry about him going off half-cocked on someone because he’s angry.  I don’t need to worry about bills going unpaid, or cars being repossessed. I know that when he tells me something, it’s the truth.  I know that for the first time in a long time, he feels responsible for me and The Boy, too, and that he enjoys that responsibility.

Mine likes to teach me things.  It can be irritating, living with someone who is almost always right.  But he is, and that just leads me to trust his judgement.  He also likes to teach me stuff, and I like to learn, so it’s a win-win.

Mine is experienced.  My mom reads this blog, so I won’t go into this too much, but trust me.  It’s worth considering an older man just for that.  Yes, indeed.

Mine knows how rarely you get a second chance.  He’s careful with me because he knows how wrong it can get.  He knows how lucky we are to have found each other and to be such a good fit.  When you spend a long time being alone, you don’t say things that can’t be unsaid, and you don’t do things that can’t be undone.  You cherish the ones you love.

He makes me a better person, and I can only hope I have the same effect on him.  There were so many reasons it shouldn’t work between us, with the difference in our ages being one that seemed a big deal five years ago.  But we were younger and less experienced then.  We’re older and wiser now. ;)  Happy Birthday to my one and only Man!

I’m Always Learning About My Own Boy

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?

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

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.

The Man, The Teacher

Can I just start this post off by saying I know how incredibly lucky The Boy and I are? I know there’s a lot of single mamas out there with kiddos with special needs, and I know that loneliness, and that feeling of hopelessness that you may never find someone to share your joys and burdens. I write this post in gratitude that life, circumstance, karma, or whatever or whoever you may think had a hand in it, helped us get to be this blended family of three.

The Man is a natural teacher and kid magnet.  Whenever we go to the beach, he picks out a couple of kids who show even  the slightest interest in his surfboard, puts them on, gives them a few pointers and lets them fly.  And after about 10 minutes, a whole beach-full of kids wants a turn.  Our little neighbor often comes over to see if The Boy wants to play, and just as often ends up “helping” The Man with his projects around the house, wearing his tool belt, and learning how to use a power screwdriver, under the closest of supervision, of course.

He shows me how to do stuff all the time.  I put windows into our trailer flip all by myself, you know, and I didn’t know how to do that before I met The Man.

He was the one to teach The Boy to ride his bike.  He taught him how to pee while keeping his trousers up.  He’s taught him how to surf and mow the lawn.  The other night, The Man had brought home some m&ms for The Boy and had told him he could have them when he was done practicing the tuba. But when The Boy and I ended the practice session, I was frustrated.  He is so freakin’ smart that he thinks it’s funny to play it incorrectly and doesn’t know when to stop joking around and get work done.  This is something we’re working on, and this lesson just didn’t go right. I was tired of everything and decided to go to bed early.  The Boy quickly grabbed the m&ms and headed to his room.  In his mind, he was done practicing which meant he could have them, while The Man and I both agreed that you only get rewards when you do things the right way.  I gave up and headed to bed, very aggravated and  unwilling to fight anymore.  The Man stepped in and I could hear him speaking to The Boy through the bedroom door. He came to bed and said he had explained that we needed to save the m&ms for when he actually got the work done on the tuba, and asked him to think about it, and also suggested that when he returned the m&ms to the fridge, he needed to come and tell me he had done so.

I was so impressed. The Man had calmly explained the reasoning and left it in The Boy’s hands to do the right thing.

Not five minutes had gone by when we heard a knock on the bedroom door.  The Boy entered to tell me he had returned the m&ms, and I assured him he could earn them the next night by completing our work on the tuba. He wasn’t happy about it, but he wasn’t melting, either, and he had made the right choice, guided by The Man’s words.

This is something that would not have occurred if his dad had been around.  This is something that would not have occurred if I was still doing it all on my own.  This occurred because The Man is a good teacher, and a good parent. I am grateful.

Behavior Analysis for Dummies

I opened yesterday’s post with a series of oft-asked questions of parents of kiddos on the spectrum, the biggest of which I suspect is “Why in the hell is he doing that?”

There’s a lot of guilt one feels as a parent to a kiddo on the spectrum.  After the meltdown, or public incident, or whatever the negative behavior that just occurred was, we often think, “Was that my fault?  Did I do something wrong that caused that?” While feelings of guilt are rarely productive (although feelings are feelings and we can’t control them, really), this questions is a good starting point for a little behavior analysis.

You see, most autism parents already do this naturally, but may not know it had a name.

observation.jpgWhen your kiddo starts to have a problem at school, the IEP team may suggest a functional behavior assessment.  This is where someone (probably with a lot of credentials) will come in to observe your child over several days, and collect data about his/her schedule and routines, and more specifically, exactly what happens before the negative behavior occurs.  The reason they do this is to figure out the “trigger” for the negative behavior, so that we can better understand what the child is attempting to communicate through the negative behavior, and then plan strategies to avoid or minimize the trigger so that the negative behavior decreases, or plan strategies for how the kiddo can cope with a trigger that cannot be reduced or avoided.

Let’s say I get a phone call that The Boy is repeatedly attempting to escape from science class (yep, this happened in real life).  A functional behavior assessment would serve to identify if this is occurring at a consistent time, and what the cause might be – is it another child with lots of body spray sitting next to him? Is it the brightness or noise of the projector that is turned on next to his seat at the beginning of class each day?  Does he have to pee?  Does he have anxiety about being late to his next class?  Does he feel like he is missing something important elsewhere in the building? Is he frustrated because he doesn’t understand the material? Is there too much handwriting so he is falling behind?  Through observation, they can determine what the constant variable is whenever he escapes, and then come up with a plan (move the projector, move his seat, allow him to use a study buddy or word processor to take notes, have a talk with the teacher of his next class about being welcoming and not marking him late, or allow him to use the restroom when he needs to, rather than at passing time).  Strategies often include the use of motivators and rewards, as well, to give your kiddo positive reinforcement to keep up the good work. For instance, if The Boy uses the strategy put in place, and stopped escaping from science, he could earn some extra iPad time in social skills class.

You see, we autism parents often do the same thing at home.  It’s how I know to expect some hyperactivity after we have Goldfish, especially the multicolored kind – I discovered that through careful observation of my own. The triggers for negative behavior I mentioned yesterday came from careful observation of my own, as well.

So if you are ever ready to throw your hands up and scream “WHY??”, take a deep breath, grab a notebook, and start observing.  You already do this fancy thing called Behavior Analysis, and no one knows your kid better than you. You are no “dummy”.  It may take days, weeks, or months, but you’ll get to the bottom of it. You got this. ;)