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.

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.

Making Money on Autism

There are lots of autism bloggers, and lots of single moms with kiddos on the spectrum. Lots of us have learned so much from experience, and lots of us want to share that because we know how hard it can be.  And there a few of us who have the ability to make a few bucks doing this.

Way back when I started this blog, one of the things that inspired me was the inability to find existing social stories online that weren’t for sale.  I was tired of being nickel-and-dimed for every little resource I needed for The Boy.  Others had experienced just what we were going through, and someone had to have a social story already written, so that I wouldn’t have to re-create the wheel every time, but they were all for sale. And money is hard to come by when your paying for uninsured therapies, prescriptions, diapers or your 5 year old… It’s tough.

I have long considered trying to take this blog to the next level, and maybe “go pro” which means trying to attract companies to advertise here. Most bloggers do this, and I don’t see it as trying to make money off of other autism or special needs parents.  Advertising is everywhere, and I don’t think anyone would see this as a blogger trying to take advantage of her audience.

There are other bloggers that sell stuff on their sites, as well.  And I think we have to be very careful when we head in that direction.  T-shirts are one thing.  Resources are another.  Trust me – I understand the sentiment behind it – when you work hard to create something, you have a tendency to want to protect it, and while you want to share it with the world, you feel you deserve something in return.  I get it.  But we cannot forget that person on the other end, spending money on therapy, weighted blankets, chewies, and special gluten-free ingredients.  Our community needs to remain one in which we share resources at little cost, and respect each other’s struggles. If we forget that, we’ve lost our way.

The autism community needs to stick together

5 Ways to Support the Newly Diagnosed

finding the path after diagnosis of autismI often think back to the day we got The Boy’s diagnosis.  The ex and I went our separate ways – he went back to work, and I drove to a nearby Kmart parking lot to process (i.e. cry my eyes out, hyperventilate, ask myself over and over “What are we going to do?” and eventually call a close friend to talk me through it.  Thank God for her.) The psychologist we had seen had written “Autism Society of America” on the back of a business card, suggested we look them up, and said goodbye.

Once I collected myself, I still didn’t know what I needed, or what our next steps were.  As I think most do, I went to the internet.  Unfortunately, the internet is a big place, and I’m not sure the right tools and support are readily accessible to someone doing their first post-diagnosis search.

So how can we support parents who are new to this whole kit and caboodle?

1.  Support local nonprofits that directly help our kiddos.  The more those groups are supported, the more visible they can be in the community, and the more likely it will be that someone hearing that diagnosis for the first time will recognize the group as a resource they can use.  This means supporting them with money, with attendance at events and workshops, and with your volunteer hours.  Yes, volunteer hours.  It may seem like we have the perfect excuse not to volunteer, but we have to give back if only to our own community – if we don’t, who will?

2.  Make your presence known at the school.  Kids with a new diagnosis will have parents with questions.  They will most likely be asking those questions at the school. If you have maintained a good relationship with staff while dealing with the school, they may just see you as a resource for parents who are new to this whole shindig, and may pass your name along.  Or if there is a group of you parents, even a social group, that goes for you, too.  Schools really do want to help, and may attempt to connect someone with questions to those who may have answers (that’s you!).

3.  Use social media to post “the good stuff” to your friends, and encourage them to share it.  Parents who have questions will inevitably be some of your friends, or friends of friends, and so on.  The more “the good stuff” gets shared and posted, the more people will see it, the more it will be found by those searching for it.  That’s how the interwebs works for good.

4.  When they come to your group, be welcoming.  You may think this goes without saying, but groups are a funny thing.  Sometimes, a group can get an attitude with newbies, and can be judgmental. You don’t have to like everyone who comes to the group for help and support, but the fact remains they need help (and they may need more help than others!).

5.  Respect the process.  People react differently to the news of a diagnosis.  Some will immediately seek out others for help, while others will remain private and need to sort through things on their own.  Don’t be pushy.  Allow them to come to terms with it, and just be a friend.  Just knowing there are others who are going through what you are going through goes a long way, especially at the beginning.

Special needs parents have many, many roles.  One of them should be “guide to others who have just joined the group.”  What would you add to this list?

Re-training

plannershot1The downside of having a son with autism in secondary school is the sheer numbers of teachers we have to re-train each year.  And I’m only half-joking.  Most of the teachers we have encountered since the Big School Switch of ’13, have been accommodating and flexible, and have fallen in love with The Boy relatively quickly, wanting to do anything in their power to help him succeed.  But here we are at the beginning of a new school year, dealing with stuff that is very clearly spelled out in his IEP, and the teachers are not yet implementing.

One of The Boy’s IEP goals directly relates to his use of the agenda, speaks to his difficulties in this area, yet within the first two weeks of school, we still only had one teacher ensuring he was utilizing it in his class. Then the homework hit the fan this week, when I had no idea two assignments even existed before they were due in science and social studies.

I emailed the teachers last night, basically copying and pasting from last year’s introductory email, explaining The Boy’s need for help with communication, planner use, and the dire need for them to let me know what the hell is going on, but stated in much more genteel language.  And I got some nice responses.  Yet in today’s planner entry, there was clearly still some misunderstanding from whoever-it-was that was writing in the planner (clearly not the teacher – an aide? a substitute? Who IS this person telling me that his assignment wasn’t finished and needed to be finished by tomorrow??).

And then there were the assignments we had busted our butts to make sure he got done, that were returned in his planner this evening without having even been turned in.  Yet another area of difficulty, yet another area in need of training.

After several emails, I finally got some traction and his program teacher has agreed to meet with his teachers tomorrow to review this stuff so we can get him going on the right track before he gets too behind. Thank goodness I don’t have to re-train her every year! She’s worth her weight in gold. :)

An Open Letter to the Mom in the Doctor’s Office Today

I overheard your friend (daughter? niece?) reading to you from that questionnaire today, and I took notice because of all of your “no” responses. I immediately remembered those soul-crushing, developmental, yes or no questions, the mix of defensiveness and hopelessness when you begin to understand just how far behind your little one is.

“Does your child point to an item s/he wants? Does your child turn pages of a book independently? Does your child say three words?…”

And on, and on, and on. I heard the tone of your voice change the more she asked. I heard you begin to whisper. I glanced at your face to see if you might cry, but you were holding it together. I guessed the tears may come later when you are alone, maybe before you fall asleep tonight.

And I watched your little one. I watched him smile, and observe the other children playing – he was watching close, but something was keeping him from playing along. He looked at me and made eye contact. I waved and smiled. He smiled bigger and looked to you for reassurance, but you didn’t notice.

I wanted to say, “This tall, gangly boy of mine sitting next to you didn’t do any of that stuff either. We had to use flash cards to teach him words. He didn’t point at anything.  They thought he was cognitively impaired because he played with the toys wrong.  But you know what? He is the best speller in his class and uses words like ‘misheard’ and ‘eclectic’ as an almost-seventh grader!”

I really wanted to say, “These questionnaires are a special kind of torture for us, and you are most definitely one of us. You are not alone.  Don’t discourage too quickly.  Be hopeful, because he needs you to be. I have been in exactly that spot where you are sitting and it is awful, but better days are ahead. Believe in that little boy.”

But I didn’t say anything because I’m not sure I would’ve wanted anyone to do that when I was in your place. Maybe I should have. Instead, I hope you get the support you need through this process, and that you realize quickly that he needs you to just do what you gotta do to get him as close as you can to where he needs to be.

And that there are lots of us rooting you on, even if silently from the chair next to you in the doctor’s office.

My little blond boy, once upon a time...

My little blond boy, once upon a time…

ESY Is Different Down Here

ESY, or Extended School Year, has been a mainstay of The Boy’s summer experience since he was six years old.  I have written about some of his experiences in the past, and he always looked forward to it when we lived up north.  Last year, he struggled with adapting to a summer day camp which did not include computers, and was not like school very much at all, although he ended up enjoying the experience and meeting some new (and long-lasting) friends.

Before we moved here, I asked some parents with whom I had connected in advance, through the autism society’s local chapter whether or not they knew anything about the local ESY program.  They had no idea what I was talking about…

“Uh-oh”, I thought.

When we went through the IEP process this year, the assistant director for special education for the school district was involved (because I was trying to get The Boy into his current program, and being the warrior mom that I need to be to get things done from time to time), and she indicated then that ESY for this summer would be a long-shot.  We would have to prove he needed it with data. “I’ve got six years of data backing me up,” I thought.

And this year’s IEP rolled around and his special ed teacher for language arts and math basically explained that even if he did qualify, which she clearly didn’t believe he did, it was very different from what we had experienced up north.  Down here, it was basically one-on-one tutoring with an aide for a few hours a week.

“Oh crap,” I thought.

I immediately began to devise activities with which I could supplement his summer camp – was there a computer camp or cartooning lessons I could find somewhere (and could I even afford it)?

The Boy’s program teacher called about two weeks later to let me know that they had determined that The Boy would qualify for ESY this year, because he had had it for so many years, and that they would continue to collect data next school year to determine whether or not he would qualify for the following year.

“Yay… kind of,” I thought.

Now we need to determine where this “ESY” experience will occur, and how often and for how long.  Luckily he will have his program teacher, which helps with the continuity.  But it remains to be seen how effective this brand of summer enrichment will be toward maintaining the structure and routine that most kids on the spectrum need through the summer months.

sandy boy

Luck

I was chatting on Facebook with a cousin of my dad’s whom I don’t know altogether well, and he said he had been following my posts about autism, in particular a link to this post, describing how much of a struggle some parents of children on the spectrum face every day.  He said he hadn’t realized how bad it could be, and hoped we didn’t face those kinds of challenges.

I filled him in a bit on The Boy, and how well he’s done in his new program, and predictably (albeit sweetly), he said how lucky The Boy was to have such a strong advocate for a mom.

The truth is, I am the lucky one to have The Boy.

I look at him every day, amazed that this boy is mine, that he has half my genes, that he has grown so big and so clever and so funny.  That he has grown into this fascinating human being with moods and thoughts and interests ranging from cars to space to recording and sound editing.  That he is so capable, and so vulnerable, yet so strong himself to be on the spectrum and deal with all of his challenges with fairly little complaint.

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I just wish I could know him better.  I wish I could communicate with him more easily about his deep thoughts and feelings (as if he would, pre-teen that he now is).  I wish I understood him better, and I feel like I have failed him when I can’t understand something he is trying to make me understand.

I love this boy of mine, more than I ever thought a human being was capable of loving, and the bonus is that I like him, too.  I wrote recently about everyone falling in love with him, and most people who get to know him end up knowing he is a great kid.  The kind of kid it is easy to be strong for.  My job is simple, and I’m the lucky one.

The Tuba is Here

tuba practiceIt seems the crisis has passed, although I have had to email the band director to find out the current assignments, and to ask him to make changes to his last quarter grade based on the tests I had sent him on video.  I think “maintenance” will be required within our new arrangement, but I don’t think they will again try to steamroll me into something that just isn’t right.

The tuba has arrived, and I again thank all of my readers that tried to help.  I actually found a decent one on ebay, and it is a smaller, easier size for The Boy to handle.  It isn’t pretty, but it does work, and hopefully we can work from where we are now.

According to the director, The Boy has begun playing more in class, but is still having problems starting with everyone else.  I had asked to come in and take video to do some reverse modeling, as suggested by the autism specialist, but the director was not comfortable having me come in to do that – just wanted me to “explain” to The Boy when to start playing.  So we continue to play this game, with him pretending like he is making accommodations and modifications, when he really just doesn’t get it, and isn’t going to lift a finger to try.

But I see progress, and I’ve stopped them from going down the usual path when they encounter a kid who “doesn’t meet the criteria,” so maybe, just maybe they’ll think twice before doing it to the next kid.

Tuba Update

Aren’t we done with this yet?

Well… maybe.

I wrote my four-page letter to the principal almost two weeks ago, and haven’t heard a single word from her, nor from the band director.  I haven’t heard a thing from anyone (except from LinkedIn, which notified me that the band director had viewed my profile, the same day that the principal received the letter… a coincidence?  I think not!), and so I am beginning to believe they have stopped trying to get him to switch instruments/quit.

I still need to get him an actual tuba to practice, and I can’t believe the help you all have given me.  It’s amazing, really, and makes me realize that the internet can be a very good place.  College band directors and nonprofits have been contacted by us, as well as on our behalf, and one of my readers here referred to tuba players as a “brotherhood,” and he said they take care of their own.  This brought me to tears (good ones!) because that is something I hoped for when The Boy began school band.  I saw it as a place he could belong, and meet neurotypical kids who were a little more likely to be accepting of him.

It also reminded me of when I was in the college marching band, in the piccolo section, and we traveled to Las Vegas for a bowl game.  The stadium continued to sell beer past halftime, and by the end of the game, the opposing team’s fans were incoherent, and several young men were actually threatening us, the piccolo section of the band!  The tuba section, all big, beefy boys left their seats to stand in the aisle between us and our bullies with their arms crossed.  It was a very brave and gallant gesture.

You helpers and supporters are lifting this boy up, in the face of someone who wants him out.

I feel very thankful.  We should have a tuba in the next week or two, and then I will ask to visit class to videotape so we can work on some modeling for The Boy, and help him to participate, which should have been the focus of all of our discussions from the beginning.  Keep sending us your positive thoughts, as now The Boy will need to get caught up!

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