Taking Things and Autism

Last week, I went to pick up The Boy at Grammy’s, and found him playing with his iPad, and pretending to use a TI84 calculator as a game controller. “Funny, that,” I thought. “We don’t own a fancy graphing calculator…”

Because I know better, I didn’t make a big thing of it, instead casually asking where it came from. “I don’t know!” The Boy responded, happy as a clam.  You see, a few years back, he had learned from somewhere that these fancy graphing calculators (that also cost around $80) had the capability of playing games, and you could even download a Mario game on them…  At the time, I said what any self-respecting parent would say.  “No.  You can play Mario on your Wii, on your DS, and even on the computer.  You do not need a graphing calculator for the sole purpose of playing Mario.”  We took a picture of it at the store, and that was that.

Until now.  The calculator clearly belonged to either another student or the school.  The question was, was it borrowed or taken?

Do Not DisturbThe Boy has picked up a few items over the years that have to belonged to him.  We have discussed these items and returned them, sometimes stealthily, without The Boy’s knowledge.  He seems to understand in each case that it isn’t right to have things that belong to other people, but does’t completely grasp why.

So, I looked it up, and found this, which explains that lack of impulse control is a core deficit of autism, and if a kiddo on the spectrum sees something that they want and it doesn’t appear to belong to anyone, in their minds, it can be theirs.  Along with that, ownership and theft are largely social constructs, and recognizing those is a core deficit of autism, as well.

I enlisted the help of his AS teacher, and put the calculator in his backpack so that they could return it to the rightful owner tomorrow (and so his teacher could find out what had actually happened).  In the meantime, The Boy’s neighborhood friend came over and they played quietly with legos until it was time for supper.  When his friend left, The Boy could not find the blue car they had made and immediately pronounced that his little friend had stolen it. A-ha! Teachable Moment! We located the car within a few moments, and after supper talked about how he had felt when he thought his friend had taken it, and didn’t he think that might be how the owner of the calculator was feeling… He seemed to understand, and knew it had to be returned the next day.

It turned out the calculator had been left in band by an 8th grader, and The Boy had found it and made it his.  It was returned, and all was well.  By no means do I think this will be the last time something like this will happen, but this is yet another commonplace occurrence for those on the spectrum, one that could easily be misinterpreted by neurotypical peers and authority figures who don’t understand about impulse control and ownership as a social construct.  Yes, we still need awareness about all the facets of autism, so that others can use these as teachable moments, as well, and not just be met with punishment and misunderstanding.

Delayed Gratification and Rewards in Autism

The Boy loves his iPadRewards and Motivators are how we roll in autism land.  If you want Bucky to do his math work, you gotta give him something in return.  That’s just how it works.  Whether it’s a break, a walk, a starburst, a handful of goldfish… whatever works, baby.

Fast forward to an adult on the spectrum trying to find meaningful employment, whatever that looks like.  Hopefully it is something s/he is interested in, but if not, how does it work?  Bucky wouldn’t do his math without a starburst, so will his employer ply him with starburst to get him to work as an adult?

My kiddo doesn’t understand money, and more than just the concept that it doesn’t grow on trees.  He has a hard time counting change, and instead has been taught that if he is at the store and needs to pay $4.88, he should give the cashier a five dollar bill.  He doesn’t really grasp that $150 to fix an iPad screen is a hell of a lot of money. And even though he understands that you need money to buy things, he doesn’t understand needs versus wants, and if left to his own devices, might very well decide to purchase another 3DS game rather than pay a phone bill.

He will need some assistance, and that is obvious.  But he will also need some motivation to do his job.  Therefore, as we look forward to transitioning (I know we have several years, but it’s good to be aware of where we are and where we’ll need to be), we will have to work on making sure the things we use to motivate him are growing like he is.  And we will have to work on the delay in gratification, because one does not receive a paycheck every minute, hour, or day.

This is the type of thing that isn’t intuitive for me, and that I will have to train myself to work on with him.  Everything is a process with autism.  Everything.  And nothing goes in a straight line.  A convoluted process, I guess.  We learn everyday, we fail everyday, and we try everyday.  Now to develop a plan…

Inclusion, Exclusion, Seclusion: What’s Ideal & What’s Real

Where will my boy live when I am gone?

Where will my boy live when I am gone?

I recently saw this post on FaceBook about a planned community being developed in Florida for adults with developmental disabilities.  It’s a gated community designed to foster independence, while keeping residents safe.

Immediately, I realized I had two simultaneous opinions about this.  One little voice said, “Wow! What a great idea! A place where everyone will have the assistance they need, the independence they deserve, and the safety that we parents worry so much about.”

The other little voice said, “Separate but equal,” and that statement conjured all of the negative connotations associated with  that phrase.

April will soon be upon us, and whether we are looking for awareness or acceptance (or both!), I can tell you we’re not looking for exclusion from society for our kiddos.  I have always taken The Boy out to eat, out to get groceries – we’ve never hidden from the public eye, because he needs to experience the real world, and the real world needs to experience him.

But the reality is that the world is not really set up for young adults like him yet.  Under-qualified staff are hired to monitor group homes, that are often underfunded and inadequate for those seeking to live a meaningful life as independently as possible.

So, if reality is not progressing fast enough, do we sacrifice our kids, and try to force the round peg of our ideals into the square hole of current supports for adults on the spectrum?  Or do we sacrifice our ideals a bit to get our young adults the supports they need, even if it isn’t in an ideal placement?

I don’t know the answer. I think we keep fighting for the ideal, while hoping that we’re not considered hypocrites for wanting our kids to be in a safe and supportive place.

I’m Struggling with Time

The Boy and I have been here for almost two years – I can’t believe it.  It seems like only yesterday we were packing up the rental truck, and tossing the huge TV to the curb in preparation for our big move.  And I’ve been at my job almost a year and half, too.  That I can believe, but that’s a post for another day…

I’m still adjusting.  And the biggest adjustment in all of our life changes has been time.  I have a constant feeling like I do not have enough time to get anything done that I need or want to get done.  Something is always slipping through the cracks.  It is true that I simply work longer hours.  But this is misleading.  Of course my school day was shorter than my current work day, but I was often in after school meetings, doing concerts, grading homework, and doing other school-related things well into the evening. I don’t often have evening obligations now. So while I technically work longer hours, I don’t think this is a big part of the issue.

Another part of it is having a husband to spend time with.  Before we moved down, I spent time with The Boy, but I had alone time, too.  I don’t get as much of that now, and nor would I want to be alone that much now that I am married. I enjoy spending time with my hubby!  That does mean less time for solitary activities, though. And if I have a choice to spend time with The Man or do things like the laundry, The Man wins every time – that’s a no-brainer.  But when it comes to reading or writing… well, it gets a little tougher.

I think the final piece of the puzzle is drive time.  It takes forever to drive five miles, and most destinations are a half hour away.  I leave work at 5, and pick up The Boy at Grammy’s, but we are often not home before 6. Most of that is wait time for The Boy who needs multiple timers to get him to leave, but it is also drivers who like to go 10-20 miles under the speed limit, and a default speed limit of 35 on two lane roads.  The grocery store takes 20-30 minutes to get to on a Monday evening… and so on.  Up north, when I picked The Boy up at 5, we could often get to the grocery store, do all of our shopping and still be home before 6.  It’s a big change.

I miss my idle hours

I miss my idle hours

During the summer I go to work earlier, and therefore leave earlier, so I think it’s a little easier to budget my time during the day. It is our busiest, most stressful season at work, but I also get a little down time to myself before the evening begins.  Everything is a balancing act, and although slight changes may make things easier, time will always be a struggle. At least spring is here, which means more sunshine and warm weather – they make everything a little easier. :)

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

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, hireasons 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.

Question 32 asks about what those with autism see first when they look at something.  Naoki reinforces what I have heard in many places, that those on the spectrum see the trees first, and then the forest; the details before the whole.  He also says they tend to “drown” in the particularly striking characteristics of those parts, and it tends to be harder to see anything else. If someone you love is on the spectrum, you will have, no doubt, experienced the attention to detail.  The Boy is always drawing my attention to some small part that I never would have noticed without his help.

Question 33 asks about appropriate clothing, and why this can be a struggle for those in the spectrum.  Naoki says they know and understand why we wear the things we wear, but that they “forget” what is appropriate, and how to make themselves more comfortable. He also explains that those who choose to wear the same thing each day (we have had our battles with this, for sure!) feel like their clothes are an “extension of our bodies,” and a guard against changing situations.

Question 34 asks about perception of time. Naoki says, “the fact that we can’t actually feel it makes us nervous,” and this makes perfect sense to me.  Timers help many on the spectrum have a sense of passing time, especially those that are visual in nature. And because the future is uncertain, it is a cause for a great deal of anxiety.  This is one of those answers in this book that just “clicked” for me, a true “A-ha!” moment.

Again, this book is a source of inspiration and wonder for me, and may be the closest I’ll ever get to reading The Boy’s own mind.  Not every person on the spectrum is the same, but these answers are food for a great deal of thought, and foster greater understanding and patience between me and my son.  I highly recommend this book.

6 Ways Schools Could Open Doors for Students with Special Needs

opening doorsPublic schools are being asked to do so much right now, and so much of what they are being forced to do is a waste of time. Music and the arts are being cut, students are overloaded with standardized tests, and even recess is being shortened so work can be completed. In short, schools are being forced to run like businesses, but our children are not raw materials, nor are they products.  They are children.  And when the pendulum swings back (I hope to God it does), when more rational heads prevail in remembering that we are teaching human beings how to be human beings, rather than filling little heads with facts, maybe then the schools will have an opportunity to begin filling gaps and opening doors for our students with special needs.  Here are some ways they could begin:

  1. Mentor/Mentee programs These programs connect students with an adult in the school community who can meet with them on a regular basis, build a positive relationship, and provide guidance to students.  The Boy has built this kind of relationship with the business and computer teacher at school, quite organically.  He doesn’t even have her as a teacher, but they use time with her as a reward for positive behaviors at school, and she is often a reason he wants to go to school.
  2. Peer to Peer programs I’ve written about how successful these programs can be not only for students with special needs, but for typical students, as well.  Building Relationships between kids, and providing avenues for them to learn about each other as people can only result in good things. When everyone’s needs are met, bullying just isn’t a thing.
  3. Peer Mediation programs These programs foster conflict resolution skills in our young people.  At first they are taught and coached through the steps of providing mediation for peers who are in conflict.  After practice, they become second nature, and the students involved with these programs become leaders, as they have the skills to help their peers relate to each other in positive ways.
  4. Social Skills programs Carving time out of a busy school day to provide direct instruction to students about how to initiate and maintain positive social interaction seems like it makes perfect sense for those students who naturally have defects in this area.  It can also make perfect sense for those students you may assume has these skills already, but may not, or may struggle with these skills privately.
  5. Critical Thinking Instruction More than anything else, we need to be teaching students how to really think, rather than regurgitate readily available information.  We need to be teaching them how to make rational decisions, how to determine whether a source is credible, how to examine their own thoughts and opinions, and how to interpret the world around them.  For special needs students, this can be especially difficult, but even more necessary as we prepare them for their adulthoods with varying degrees of assistance.
  6. Creativity and Problem Solving Instruction Children today do not have much opportunity to be creative.  And when we cut art and music programs, we are essentially saying that being creative is not a high priority in today’s job market – what could be further from the truth? There are many ways teachers can provide opportunities within their current limitations to foster creativity and problem solving, and many ways we can help special needs students be creative.

The great thing about school programs that benefit students with special needs is that they often benefit all students.  We assume that typical kids don’t struggle with the same things as those with special needs do, but they do.  They are often better at hiding it, because it may not be as dire a struggle.  What middle schooler do you know that wouldn’t benefit from a social skills class or a peer to peer program?  What kindergartner wouldn’t benefit from some opportunities to be creative?  What person on Earth would not benefit from having a mentor?

When we finally do something to correct the course of public schools, and begin to focus on the person rather than the content, these 6 programs would be a good start to guiding all of our students to being better human beings.

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.