IEPs and Trust

It’s IEP season again, and we have our appointment set.  We’ve also had a curious email from The Boy’s program teacher.  She was excited to tell me that they were going to offer science and social studies in a special ed classroom next year, as well as math and language arts, which The Boy already has.  He would be with students who are “academically equivalent” to him, but in classes taught by resource teachers. He would still have access to her social skills class and his elective classes.

IEP documentationConsidering the goal of special education is to place students in the least restrictive environment, and considering he would lose virtually all access to his neurotypical peers, I politely pointed out that I did not think this would be an appropriate placement for The Boy.  His program teacher cautioned me not to make any decisions just yet, because she felt this would be a good placement for him “due to his academics”.  Curious, because The Boy has gotten all A’s and B’s this year. I told her I wouldn’t rule it out, but at this time, I didn’t think it would work for him.

I added a post-script, and asked if she thought the pilot program in which The Boy participates in the Middle School would extend to the high school, to which she replied that she didn’t think so.

Fast-forward to a few days ago, when I heard from a friend whose son is in the program, as well.  She said she heard they may not continue the program at all, as in not even for next year’s 8th graders… And the tumbler clicks into place.

Even though I trust this person with my child each day, I cannot take her suggestions to heart because I fear she has been directed to encourage me to accept this put-all-the-kids-in-resource-room plan so that they can both comply with IEPs and discontinue the program. Once we change the IEP to say he needs to be in resource, they no longer have to fund a paraprofessional to be with him in his general ed classes. It’s not what’s best for the kids, but what’s best for the school district.

Silly school district! They continue to underestimate me, because I know the law, and I know my son’s rights.  They are going to have to have data to back up that he is “academically lacking” in his general ed classes to show that he needs so much more support as to be placed in a self-contained classroom, and removed from the general ed curriculum.  And they don’t have it.

Let the games begin.

Summer Plans Now That There May Be No Camp

The Boy’s summer camp that he has attended for the past couple of summers has lost its home, and I am fairly certain he won’t qualify for ESY this year, magically, even though he has qualified since the age of 5.  This leaves us with a bit of a problem.  An unstructured summer for a kiddo on the spectrum spells disaster.  I would consider enrolling him in a program primarily for neurotypical kids, if I thought for one hot minute that anyone on their staff would have a clue about autism.  But since the paid professionals in the area still seem to be clueless, that is a lot to expect, and a lot of money to spend on an experience which could quite likely do more harm than good.

Time OutGrammy and Poppy have already spoken up, suggesting a beach day with The Boy each week, to get him out of the house.  Excellent.  The Boy takes to water like there’s no tomorrow, and thankfully doesn’t try to swim to Africa like he did when he was younger.  He can stay absorbed for hours just wading in up to his chest and jumping around, and I think that would provide a lot of sensory input and exercise in his routine.

Ever the planner, I am already thinking of post-high school experiences and what those may be like, so why not use this huge chunk of time in the year, which already has built in traditions and transitions, toward a better purpose.  The Boy has an undying love for PowerPoint and it’s Google counterpart, so I’m developing an idea to pay a bit of allowance for “projects” that I plan to give him for those programs.  I’ll give him a set of parameters at the beginning of the week, and allow him to develop something for me over the course of the week, building on the idea that you get paid for doing work, and that the work may include doing what someone else wants you to do.

Another thought I had and just haven’t had time to act upon yet is to reach out to some friends in the veterinary medicine business, and some friends who have multiple household pets and offer The Boy’s services as a walker, or a visitor.  If we can get him to learn some skills in an area in which he has great interest, he may be able to find something meaningful to do with his life and be able to give back to others.

I’d like him to read a novel this summer, even if it means we read every word of it together, but with enough supports and incentives, I think even this is attainable.

And somehow, we have to get him some time to socialize, which is the hardest part in our county, where it seems like it takes two hours to get from one end to the other some days.

Yet again, I find myself doing things that the professionals handled for us up North.  DIY special education programming around here, I reckon…

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.

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. :)