Scheduled Time

I lost one of my two flute students to gymnastics this week.

When I was a middle school band director, I lost more than a few to hockey and dance.

But when I was a kid, this wasn’t a thing. Sure, kids were in soccer and I even took ballet in kindergarten. But this every-night-of-the-week-for-four-hours-a-night-oh-and-four-hours-on-Saturday-too was definitely not a thing. Neither were the moms who got mad because the rest of the world couldn’t accommodate their insane schedule. “What? You mean I can’t get a dentist appointment at 3am on a Sunday because that is the only time my kids are not in dance/gymnastics/swim/horse back riding/AAU badminton??”

*dragging over large soapbox*

*standing on said soapbox*

When I was a kid, we did this thing called “playing” with the neighborhood kids. We even had a game called “Ghost in the Graveyard” for when we were out past dark – shocking, I know. We rode bikes, climbed trees, ran through each other’s houses like packs of wild animals looking for fruit snacks, and then back out through the other door. I “taught school” to some younger children (for as long as they would stand it) on the hill in a neighbor’s yard across the street. We rode bigwheels back and forth down the street. When we got a little older, we walked across a small field (with garter snakes!) to the convenience store to buy candy.

We were not scheduled within an inch of our lives.

I think today’s parents have control issues. IMHO you should not be involved in any activity which eats up 24 hours of your free time per week at the age of 9. It’s wrong, and there will be long term consequences. Don’t you trust your children to any degree? Do they get any say in how they spend their waking hours?

Autistic kids aren’t usually much for team sports, and for this one small blessing, I am thankful. But even if The Boy were not on the spectrum, I would not be raising my child on scheduled time.

*crawling down off soapbox, albeit ungracefully because I only had the one year of ballet*At the Cape

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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.

5 Tips for Autism Parents for “Dealing with the School”

autism & schoolI’m a latecomer to this.  We were very lucky with The Boy’s elementary school, and his elementary teachers, in particular his ASD teachers who really acted like caseworkers, made sure everything ran as smoothly as possible.  They advocated for the kids with other teachers and with administration, they handled little problems as they came up, they didn’t think the world was ending with every not-so-good day, and thank goodness they were the foundation, the bedrock if you will, of The Boy’s education.

They spoiled us, but they also showed us how it was supposed to be.

When we moved south, I was shocked at how bad a school could handle it’s special education students.  So I fought to get a better placement for The Boy, because I knew it existed, and I knew we would lose him if we didn’t.  And we got it.

Better, but not perfect.  If you follow my blog regularly, you know that even now we have issues with certain teachers who just don’t get it, strange schedule changes that don’t make sense, and administrators all too quick to wash their hands of anything that comes up. In short, I still have to “deal with the school” from time to time, and the following are some of the best strategies I have found over the years for getting what you want from them.

1.  Listen and watch to determine who your allies are.  Before we moved here, I contacted the local autism society who put me in touch with the autism specialist for the county. She was supposed to be this fantastic resource, but I’ve watched her and listened to her, and to this day, I don’t consider her an ally.  She almost prevented The Boy from switching schools, and I’ve seen how she has handled other situations with other parents, and I’m not impressed.  On the other hand, through that placement process, I was impressed with the assistant superintendent for special education – she cut through the bull on the second day of our IEP meeting (with 14 members present), and brought some chart paper to illustrate that this really was a no-brainer, and the best placement was at his current school. If you watch and listen, you can determine who might be a good resource, and someone to turn to when something’s not right.

2.  Never trust anyone 100%.  Unfortunately, you always have to be wary, because in a school setting, people are not always at liberty to say what they really want to say, and sometimes, due to the nature of autism, they will bend the truth about something that happened (or didn’t happen), or not tell you at all.  A friend recently had a conference with two teachers, one of whom was a revered special ed teacher.  The friend and her son walked into the meeting, expecting to meet with cooperative teachers trying to find a solution, and the revered teacher began to yell at the son for disrespecting his mom at home.  My friend was so taken aback, she asked her son to leave the room, and in her words, “if that was supposed to be support for me, it definitely didn’t feel like it!” People are people, and they make mistakes.  They also change, and teachers get tired. It’s a tough lesson to learn, but just because you could depend on someone “on the inside” in the past, doesn’t mean that will always be the case.

3.  Don’t belittle the teachers.  I read on another autism blog’s Facebook page recently something about actual quotes from IEPs she’s been involved in, and it said something like “I am a taxpayer and I pay your salary!”  Ummm, no.  As a former teacher, this is just about the worst and most alienating thing you can say. Many times, teachers’ hands are so bound by mandates and the wishes of the district and administration that they have little to no power, even over what happens in their own classrooms.  Saying things like this ensures that they will not be your allies, and that can turn out really badly, in the end.

4.  Keep a poker face.  It’s ok, and even advisable to play dumb from time to time.  Earlier this year, The Boy got in trouble for making noises when entering his last class, which is supposed to be a social skills class with his autism teacher.  She had decided it was going to be a silent class, and you can imagine how well that went over with The Boy, who understandably feels like he can let loose a little at the end of the day in his little autism community.  And his teacher escalated the situation, making him more and more angry and upset.  She emailed me with a long list of all the things he had done.  Rather than retaliate, and explain to her about autism (as she clearly had forgotten all of her training for that hour), i suggested that The Boy may have needed to *insert any usual autistic reaction here*.  I could have gone off on her, asking her what the hell she was thinking, and didn’t she know that kids on the spectrum stim and make noises, and to make a social skills class a silent period is the definition of stupidity, but I didn’t.  I simply let her know that The Boy may have had a hard time with it.  Don’t tell them how to do their jobs, even if you know better than they do. Play dumb, and remind them that your kid is a kid, and will make mistakes from time to time.  Together we have to teach them what’s appropriate sometimes.

5.  Pick your battles.  Most autism parents are very familiar with this, but realizing school is not the be-all, end-all was a big a-ha moment for me.  I don’t care so much about grades, because they are based on a standardized norm, and my kid is not standardized, and definitely not the norm.  I care if he learns the content more, but again, our home life is more important than the Types of Energy and the Pharaohs of Egypt.  I have given up on the science teacher this year, who rather than modify assignments, is choosing to give my child grades based on effort.  I can’t teach him science, so I guess he just won’t get much out of the class this year.  Disappointing, but not the end of the world.  The teachers (even the autism teacher) are still giving us only a day’s notice about tests and quizzes, so when that happens, we do what we can but I don’t stress. He usually does pretty well, and what do tests show, anyway? Sometimes you bang your head on a brick wall until you realize it hurts, and then you move on.

Some of these tips seem contradictory, but they aren’t.  They’ve all helped me navigate for better resources and understanding for The Boy, and I hope you can use them too.  Do you have any tips of your own?  Share them in the comments, please!

Shared on amamasstory.com – visit her Mama Moments Monday Link-up!

The Boy is Back

The Boy, still sleeping, catching up from Spring Break at his dad's

The Boy, still sleeping, catching up from Spring Break at his dad’s

The Boy is back and seemingly had a good time.  And I am glad.  I’m glad there were no emergency phone calls asking me what to do because he is having a meltdown.  I’m glad it sounds like they actually spent time together, which hasn’t been the case in the past.  And it’s early days yet, but I’m glad that The Boy seems to be happy to be home, with no lingering ill-effects like cat scratches covering his hands, or a fear of the bathtub.

I am happy to have him back, and I am happy he had a good time.

That does not mean that I trust things with his dad have changed.  While setting up this trip, his dad talked about taking him to Disney in May, because he knows someone who works at Discovery Cove and could get “us” into all the parks for free – you see, he wanted The Man and I to share in this adventure, most likely because he wanted us to drive The Boy down to Orlando to meet him.  I asked him not to mention this idea to The Boy, and told him May wouldn’t work, as The Boy is still in school at that time.  When we met for drop-off, the ex explained that it would have to be postponed, and that the cost of Discovery Cove would be $150 each for he and The Boy, and if The Man and I wanted to go it would cost us $400 a piece, so maybe we wouldn’t want to do that.

So says the ex, who is almost $800 behind in child support.

So you see, I am happy this trip was able to happen.  I am happy The Boy seemed to have a good time.  But not for one second do I think things have really changed.  Not for one second do I believe the ex is done hurting The Boy, albeit unintentionally.  Plans will continue to be cancelled, phone calls left unmade, etcetera, etcetera, etcetera…  Maybe it’s pessimistic, and distrustful, but it’s also evidence-based, and I am too protective a mom to think otherwise.

First Visitation in a Year

Saturday, we hope to take The Boy to meet his dad so that he can spend the week with him.  He hasn’t seen his dad since last March, last spring break.

countdownThe Boy is excited, especially knowing that his dad has a new puppy to meet and a new car over which to obsess.  I am happy that he is excited, and happy that his dad seems to be making an effort this time around.  But, as always, it is with guarded optimism.  The Boy has been hurt too many times for me to blindly accept that all is sunshine and lollipops.  I won’t trust that this all will happen as planned until we actually see his dad on Saturday.  And not for one second do I believe that there won’t be an impact after Spring Break.

Even when trips like this have gone well in the past, there has always been an adjustment back tour normal routine, household rules, and expectations.  And I am preparing everyone here that hasn’t experienced this first-hand before.  The Man says he understands and is ready, as do his teachers – I have prepared everyone to the best of my ability for the inevitable transition that will occur when he returns.

And if it doesn’t go well, or doesn’t go at all, it’s a whole ‘nother story, as you can imagine.

But right now, we are cautiously optimistic, glad to see The Boy’s excitement, and holding our breath for now.

Once You Get to Know Him

IMG_1303Throughout his life, The Boy has attracted a great number of fans.  He has lots of people who love him deeply, including Fantastic Babysitter, his former ASD teacher(s), and lots of caregivers and therapists who have made up his support team.  Of course, The Man, The Boy’s grandparents and I adore him, too.  He makes us laugh, and surprises us everyday with his intelligence, sense of humor, and amazing abilities.  And when mentioned by name to teachers and administrators in schools of many hundreds, only his first name is necessary.  Everyone knows The Boy.

But usually, it doesn’t start out that way.

Usually, it takes a while for people to get to know The Boy, as I’m sure is the case with most kids and people on the spectrum.  The very challenges that define the disorder make it difficult for neuro-typical people to get to know him.  They tend to gloss over his human-ness and focus on what he can’t or won’t do for them.  And as they get increasingly frustrated with him, he picks up on it and begins to distrust that person, which increases the likelihood that he will not or won’t be able to do what they need or want him to do.

This is the downward slope upon which we were sliding with his band director.  But as sometimes happens, a realization was made that this kid (The Boy) is freaking awesome, and a second realization comes close behind – “If I was wrong about that, what else was I wrong about?”  As soon as a doubter sees the error of his or her ways, they not only like him, but they become a fan, and a crusader to get him whatever he needs to succeed.

Now that the band director has seen and heard what The Boy can do (including make the entire class – including the band director himself! – laugh with a joke), he has been extremely helpful and communicative.  He emailed after a recent playing test, saying how “proud” he was, probably because, as his program teacher said in her email that day, “his was the best tuba test of the day!”

I will take what I can get – no lie, this is a huge victory for The Boy.  And I absolutely love how loved my boy is.  But it sure would be nice for people to treat him well, and give him the benefit of the doubt before getting to know how awesome he is.  He shouldn’t have to prove it before people will accommodate him.

 

 

Buddies

The Boy has always relished the attention that The Man has given to him without a thought, most likely because his own dad doesn’t give him the time of day, even in the one week of the year (or less) that he sees him.  The Man was the one to teach The Boy how to ride his bike, and The Man will be the one that shows him how to shave.  He is constantly creating teachable moments with The Boy, and doesn’t hesitate to take him to the hardware store or the convenience store for a little hang-out time.  This morning, he suggested The Boy start his truck while he started my car for me (ice and sleet having covered our windshields, and not having an ice scraper because the old one got busted in the last ice storm).  It pretty much made The Boy’s day.

DSC00878

Tonight, The Man and The Boy had a wrestling match, which they do a couple of nights a week – we use it as a reward, and The Boy adores the sensory input and the bonding.  Later on, he came out of his room and sat with us (an unusual occurrence), and it was a wonderful family moment, giggling and laughing as I asked yes or no questions and they controlled eachother’s heads to nod yes or no in answer.  And he chose to stay to watch some skiing with us, cuddling up to his stepdad on the end of the couch.  And he even invited The Man to have a sleepover in the family room with him tonight since he has a snow day tomorrow…  The Man has fallen asleep, but The Boy is still there cuddled up to him, enjoying having a real dad for the first time in his life.