Acceptance

Sometimes, I look back on my time being a single mom rather fondly.  Doing it on my own was something I needed at the time.  In many ways it was very liberating, and I bonded with The Boy in a way I never could have as a married parent.  And then I remember how lonely it was, as well, when I thought it would always be just the two of us.  When there was no one looking out for me besides myself, money was tight, and I had to fill every adult role. Being ill was completely out of the question because there was no one to take care of either of us.

And then I remember even further back when I was married the first time, and one of my friends tells a story about a time soon after The Boy was born when I was so ill that I called her to take me to the hospital.  She tells the story because I have absolutely no memory of it (funny how the brain works). Yes, I was married at the time, and when my friend tells the story, she says that when she arrived to pick me up, she watched the ex step over me, lying prone on the floor, on his way out to his grown-man basketball league.  I guess I was dehydrated, for which I have gone to the emergency room a couple of times in my life, and apparently he had no inclination to take me to the hospital himself, regardless of the fact that I was very visibly ill, and we had an infant at home.

Some single moms get very vocal and agitated when married moms say they feel like single moms.  I’ve been in both positions and try not to judge.  Life as a single mom can be very, very difficult, and life as a married mom can be very, very difficult, as well.  Both positions can also be incredibly rewarding and satisfying.  And unless you are living someone’s life 24 hours a day, you really have no idea of another person’s challenges.

I find the same type of vocalizing and agitation in the autism community on various topics, and judgement all around. Words like “aspie” and “high functioning” can cause full-throated arguments, as can person-first language, vaccines, Autism Speaks, and even the varying parts of the spectrum and who has it “harder”.

I don’t often swear in my writing, but I call bullshit.

EarthEveryone, EVERYONE on this planet has their own struggles, some more visible than others.  Everyone also has their own opinions.  And there is very little in this world that is truly black and white, right and wrong.  Our diversity and duality make us human, and dare I say, interesting.  We don’t have to agree to like each other, learn from each other, or coexist.  We don’t have to compete for whose life is the hardest – there is no trophy.  But I have learned that experience is the best teacher, and if we can be civil to each other long enough to listen to one anothers’ experiences, there is a lot to learn about our kiddos, ourselves, and these interesting people with whom we share this space on Earth.

No Program Extension. Now What?

I found out the week before break that most likely, The Boy’s pilot program for “high functioning” autistic middle schoolers will not be extended into the high school, as we were previously encouraged to believe.

So now what?

He is currently bussed across the district for his program, and has a community of friends in and out of the program. If they do not extend it into the high school, he will have to go to high school here in his own community, where he knows absolutely no one, and if the high school over here is anything like the middle school was… Let’s just say that’s not going to happen.

what nowThe Man and I have been looking to buy property and build a house out towards The Boy’s school anyway, but so far have not been in the right place at the right time to make that happen.  Moving out that way would make his current school his home school, and the high school I’d like him to go to his home school, as well, but we’ll just have to wait and see.  And unfortunately, we only have another year to make all of this happen.

And then I begin to think, “Could I make homeschooling work with a full-time work schedule? Maybe with the help of Grammy?…” I think I’d be killing myself to make it happen, and The boy would miss out big-time on socialization with NT peers, but I’m not ruling it out.

Part of me is saying, “Well, maybe there are decent schools in Florida, where we want to move eventually, and maybe we should fast-forward the timeline…”

Ugh.

Being forced to make major life decisions like this because a school district can’t do the right thing and commit to the needs of its students really bites.

Autism Awareness, Acceptance, and Advocacy

Well, it’s April kids.  It’s Autism Something day and month, depending on who you ask.  It’s such a controversy in our community, and it doesn’t even need to be.

Yes, we still need awareness, as is evidenced in our daily interactions with people who just don’t get it yet.  How?  I don’t know.  Maybe they live under rocks.  Maybe they are in denial.  Maybe they are just mean jackholes.  I don’t care.  But I will continue to attempt to enlighten them about my son and his buddies.

celebrate neurodiversityYes, we definitely need acceptance.  Yesterday, you read about someone who screwed up our Friday morning (and added a dose of anxiety that will last for the rest of the school year).  She definitely needs to find some acceptance real fast.  From kids who bully our kids, to teachers who still don’t know how an IEP works, to potential employers.  The world needs to hurry up and get with the program because we are definitely not in the acceptance stage in this society yet.

And yes, we need to advocate for our kiddos, and let them advocate for themselves.  Yes, adults on the spectrum need a national platform, and need to be included on the boards of their own nonprofits.  They need opportunities to show the world of what they are capable, and the skills to communicate their needs.

So whether you light it up blue, or walk in red, just be yourself in gold, or decorate with puzzle pieces, please realize we can’t do this alone, and we can achieve so much more as a cohesive unit.  Let’s agree to disagree on a few things, and consolidate our goals so that we can get to a point where everyone is aware, everyone accepts, and there is no longer a need to advocate.

All It Takes is One Dumb Bus Driver

The BusThis past Friday, The Boy was left behind by his bus.

Our outside light was on, and our front window blinds (all three of them) were open. The driver rolled up to our house early, honked once, waited less than 10 seconds, and then turned around in the cul de sac and left.

Recently, when our regular bus driver began to arrive earlier and earlier, we worked out an arrangement with her. She now waits for him, and does not expect him to exit the house until around 6:30am, which has been his expectation and his routine for the entire school year.

When the bus left on Friday, I ran out to the porch, waving my arms, to no avail. The Boy began to get upset, wondering how he was going to get to school. We were in a panic. I called the transportation office who informed me there was a substitute bus driver, and assured me that they would instruct her to come back to pick The Boy up. In the meantime, he had returned to bed, unwilling to go to school if he was going to be late.

At this point, The Man offered to take The Boy to school himself (along with a bribe of a donut) so that he could arrive on time. I gave The Boy the choice of waiting for his bus to return, or going with The Man, and he chose to go with The Man.

When the bus arrived, I went out to speak with the driver. She interrupted me before I could get my first sentence out, was extremely defensive and rude, making faces at me, and interrupting me many, many times. She even challenged the truth of what I was saying, and pulled another child up from his seat to “bear witness” that The Boy was not visible when she was there. I told her the arrangement we had with our regular bus driver, but she seemed much more concerned about whether or not I was accusing her of being late, which I obviously wasn’t.  I was shaking by the time I was finished and stalked back into the house.

Incidents like these can not only have immediate and damaging effects (like a meltdown, or refusal to go to school), but they can also have lasting effects on children like The Boy. It will be a long, long time before he can trust that his bus will not leave him behind. Drivers need to have patience with all students, but especially with those with special needs. Would this driver have waited ten seconds after honking and driven off if The Boy was in a wheelchair? Probably not, but she appeared to not have any regard for The Boy’s specific needs.

Everyone employed by the school district that comes into contact with our kiddos should have training about what autism is, the core deficits children with autism have, and how each employee can help students with special needs find success throughout their school day. Anything less is not acceptable.

This is a large excerpt from the letter I am sending to the Director of Transportation, courtesy copied to the Director of Special Education and the Superintendent.  I ain’t playin’ and it’s not over if you’re going to be rude to me.

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.

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.

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.

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.