Big Meeting, the Second Time Around

Our rescheduled IEP meeting is today, and let me tell you, I feel so much more prepared this time around.  I am so glad that I was able to call them out on a technicality and give myself some more time to gather my wits and my resources.  Today, I’m bringing our regional rep from the Autism Society in our state.  I’ve talked with her a bunch over the last couple of weeks, and she will be there to advise me, and be an extra pair of ears.

They will still have a passel of personnel in attendance, but they don’t scare me anymore.  I have data from his previous school that supports everything that I say he needs and isn’t getting.  I have documentation in the form of emails from his current teachers that supports everything I say he needs and isn’t getting.  And I have a better understanding of their intentions, as well as the process, and my rights.

And my focus now is on the IEP, even though we will be discussing placement, as well.  He needs and aide, he needs autism-savvy teachers, and he needs help with organization.  Period.  I would like to see him go to a school that is better equipped for his needs, but I’m not as steadfast in that as I was, because I’m not sure I want him in a school where they so obviously are against him being there.  When it comes down to it, no matter where he is placed, we will continue to have a fight on our hands, and now that I know that, I am better prepared to roll with the punches (Inner Biker Chick is present and accounted for, thankyouverymuch).

What a difference a couple of weeks makes.  Let’s ride!

Laura & Margie - biker chicks

Laura & Margie – biker chicks, mslaura

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Book Club Discussion: The Reason I Jump, “Earthling and Autisman”

reasonI’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, his 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 22 asks, “Do you hate it when we make you do things?” Naoki explains that kids with autism often don’t know how to do things the same way as neurotypical people, no matter how many times they are shown how.  He explains that they understand that we don’t know if they are even listening or understanding, but that they still want to do their best, and they know when someone has given up on them.  “When we sense you’ve given up on us, it makes us feel miserable.  So please keep helping us, through to the end.”

Question 23 asks, “What’s the worst thing about having autism?”  Naoki says we can’t imagine how miserable kids with autism are.  An inability to communicate makes it that much harder.  He says, “We can put up with our own hardships okay, but the thought that our lives are the source of other people’s unhappiness, that’s plain unbearable.”  I have found that people assume those with autism to lack empathy, but my theory is that people with autism actually have an overabundance of empathy, and that many of their behaviors are an attempt at trying not to feel so much.  When I have been able to point out The Boy’s effect on those who love him, he is usually much more able to control his behaviors.

Question 24 asks, “Would you like to be ‘normal’?” I know what I was hoping to hear.  Naoki says that when he was younger, he would have jumped at the chance to be normal, but not anymore.  He says that by striving to do your best, and that is how you achieve happiness.  He says, “For us, you see, having autism is normal – so we can’t know for sure what your ‘normal’ is even like.  But so long as we can learn to love ourselves, I’m not sure how much it matters whether we’re normal or autistic.”  Are you crying yet?  Such wise words from a young man.

I hope that you’ve gotten your hands on a copy of this book.  Even if it isn’t the experience of every single person with autism, it is the experience of one, and that’s worthwhile.

We Need to Care More About Mental Health Care, Starting in the Schools

I was just watching some commentary on the Navy Yard Shootings that occurred a short time ago, and indeed how mundane these mass shootings are seeming.  No one even appeared to take notice of this last one, and that is really scary.

I’m not going to get into a debate about guns.

But I am going to get on my soapbox for a minute about something I feel is related.

Mental Health Awareness Ribbon

Mental Health Awareness Ribbon

The school where I used to work has one counselor and one social worker for 900 children.  The school where my son is enrolled now has one counselor for 300 children, and no social worker.  (And guess who is often in charge of all the standardized testing in the school?  How much counseling do you think they get done with that on their plate??)  You see, these positions are often the first to get cut or reduced, often to preserve the teaching staff.  And while I don’t disagree that teachers are important, I have seen the children walking through our school doors over the past 20 years.  I have seen how aggressive, how damaged, how out-of-control they have become.  And I have spoken with the parents, the ones who when you meet them, cause you to say, “Now I understand.”

Today’s kids are dealing with a lot.  They are exposed to so much more than in years past, and too often, parents are not on top of it, neither to control what they are watching, hearing, experiencing, nor to help them process that information.  I don’t know if bullying has increased over the years, but I do know that most kids can be mean, and when I say mean, I mean MEAN.  That’s a lot for anyone to deal with.  And then if you don’t have a perfect home-life…

Mental health in this country has always been taboo.  Unfortunately, we are telling our kids that it isn’t that important through underfunding the resources that they need to help them be of healthy mind.  And they are left to deal with the world on their own terms, with virtually no help.

I’m not suggesting that this is a cause of these mass shootings that have become so common, but our attitudes toward mental health don’t seem to have changed, even with the evidence staring us in the face.  And support for our children and their mental health should not be an afterthought, only provided when there is enough in the budget.  Our actions speak loudly to those kids, and right now we are telling them to suck it up and deal.  That’s not good enough.

The Classification of “Meltdown”

Rainbow pencil

Rainbow pencil (Photo credit: @Doug88888)

There is clearly a difference between a tantrum and a meltdown.  Tantrums are thrown for effect, while meltdowns are thrown because the ability to communicate something has evaporated, and tolerance levels have been exceeded in some way.  But I have noticed my own language lately, in describing behaviors as a “meltdown”, when they aren’t really.  With The Boy, I tend to classify all of the behaviors leading up to a meltdown as “having a meltdown”, so that others who do not have living-with experience with autism will understand.  Many, many times, we are able to avert the big blowout.  In fact, they have been fairly rare, at least in public.  But the behaviors beforehand are no picnic either, and require me to be firing on all engines, brain clicking along, coming up with solutions, ideas, and decisions at lightning speed, much like a battlefield medic.  It’s really a crisis for both of us.

Wouldn’t it be great if there was some universal way of describing this “ramping up” of anxiety pre-meltdown?  Wouldn’t it be great if that became part of the autism awareness and acceptance vernacular?  Like one of those smiley face charts at the doctor’s office that they use to help you decide how much pain you are in, so that you can describe it to them accurately?

“Boss, I’m going to be a few minutes late to work, we are at a level orange on the meltdown scale right now, and hope to have the situation back down to a yellow shortly.”

“Honey, I think we need to find our way to an exit.  This looks like a green heading into yellow territory.”

“Hello, Mrs. Vandenberg, I just wanted to let you know that we had a pretty rough morning, and got up to hot pink because his favorite shirt wasn’t out of the dryer in time for school.”

Of course, the application would probably vary from person to person, but it would provide a little more information than just, “he’s having a meltdown”.

What’s your opinion?  Let us know in the comments

Eye Contact – Not His, Mine

English: 0I’ve noticed that on bad mornings, or during and after a public meltdown, that I avoid eye contact with pretty much everyone I come into contact with.  Some would say that reaction is a clear indication of embarrassment, I guess, but it isn’t — I’m not at all embarrassed by my son and his autism.  That’s who he is, and it isn’t going to change.  It’s nothing to be embarrassed about, because we can’t control it, we can only manage it to the best of our ability.  And sometimes that’s not enough to avoid disrupting our lives and those around us.

I think this natural reaction of mine is so that I can avoid reading other people’s emotions about it.  Whether they are anxious, judgmental, sympathetic, or they pity us, I don’t really want to know.  I don’t have time to care about their feelings about the situation.  I have to make sure The Boy is OK, and then keep it together until I can process my own feelings in a private environment, so that I can go about my day and do what needs to get done.  I don’t want to have to deal with them, too.

Maybe that seems harsh, but it’s a method of survival and coping that has developed naturally.  I can’t take care of everybody else.  My son and my owns self are my first priorities.

Don’t Knock Awareness

autism awareness ribbon

I keep seeing facebook and blog posts, and tweets stating that awareness is just not enough.

Of course awareness is not enough. Acceptance would be lovely, access to therapies, respite care and services would be grand, assurances that my child will be cared for after I am gone would be divine.  And of course, those of us who have the energy will continue our fight for these basic needs (and yes, they are basic needs, as any family touched by autism can attest).

But, we can’t do it alone.  We need armies of people to help us demand that these basic needs be met.  And we don’t have armies, yet.  We can’t even get our own rag-tag assemblage to march under the same banner — we can’t even decide what our banner should say!

So I say we continue with awareness, and not just some event with a puzzle piece on a poster that says “Autism Awareness Night”.  Puzzle pieces, posters, literature, and every autism family in a 50 mile radius in attendance, so those NT attendees can glimpse the spectrum in all its glory: the sweet smiles, the small victories, the hand-flapping, the meltdowns — all of it.  We cannot rely on large national nonprofits to do the work for us.  We have to get our kids out there.  We have to make our presence the norm.  We have to be unapologetic.  We have to use every teachable moment.

Doing all of that creates awareness.  And awareness is where armies are born.

Peace of Mind

peacefulOne of the things that I have been most nervous about the move, OK, more like THE ONE THING that has given me a good bit of anxiety is the program for The Boy in the state/county/school where we will be.  You just never know what you are walking into, even with a diagnosis and an IEP in hand.  You may remember that I had spoken with someone who worked in a county a good bit away from where we were who said they didn’t have a resource room to speak of, and didn’t have any aides in the rooms with the kids.  Considering that The Boy spends a good amount in his resource room, I got a bit panicky about what I was going to be subjecting him to.

I had put out some feelers through some contacts with the state Autism Society, and hadn’t really been able to connect with anyone, until this weekend.  I finally got in contact with some parents who run the local chapter, and was able to speak on the phone with one lady who was able to give me some insight, at least into her experience.  She had also moved into the area a year and a half ago, and has a son that is very close in age to The Boy.  She was able to allay my fears a bit, and let me know about how much their little chapter has been accomplishing.  Not only was I relieved, but I also began to get a little excited.  Here is a group that is actually making positive change in the community for kids on the spectrum, and providing opportunities, and even a summer day camp!  YES!  Exactly what I was hoping for.

Not to mention that this group is a way for us to meet people like us, which will be one of the most difficult parts of the transition for both The Boy and I, making new friends.  I often complain about talking to people on the phone, but this time, I am sooo glad I did.

Tackling a Few Myths About Autism

How can there still be so much misinformation about autism?  I understand that there is a lot of research going on, and there is still a lot that is unknown, but really?  Here are a few common misconceptions:

  • People with autism do not have empathy.

My son has empathy.  There have been times (like on my birthday a few years ago), where I thought he lacked a shred of it, but there have been times that he has comforted me when I was crying or upset, or just needed a hug.  In fact there are many who will say that people on the spectrum have too much empathy, and that is why they have to distance themselves from others, because they just feel too much.  I particularly like Diary of a Mom’s post on this subject.

  • People with autism are either really good at things or really bad at things.

I believed this one for awhile, too, thinking The Boy was just really, really smart.  At everything.  And he is extremely bright.  But you know what?  He doesn’t get math too well.  He has a great ear for music, is a wonderful speller, doesn’t like to read a whole bunch, although he can, and at a high level of comprehension.  But math is not his best subject.  I used to think it was because he didn’t like it, which is partly true.  Truth be told, he struggles with it, and I’m not sure I can say it’s just because he’d rather be playing video games.  But he doesn’t fail math either.  In fact, he usually gets Cs.

  • People with autism do not have good eye contact.

This is one of the reasons I was not so sure he was on the spectrum in the very early days.  In everything I had heard, this was the number one “sign your child may have autism” and it just didn’t bear true for The Boy.  He was a happy, giggly boy, and did not avoid eye contact as an infant, toddler, or small child.  It is more apparent now, but this is not a hard and fast rule for all children on the spectrum, by any means.

Happy, Giggly Eye Contact

  • People with autism may not have it forever.

This site, which attempts to address some myths about autism, actually has this listed as fact, rather than a myth!  This is basic stuff, here people.  There is no cure.  Autism is a neurological disorder, and you cannot “fix” a neurological disorder.  You can, with early intervention and therapy “retrain the brain” to function more typically, but autism is for keeps. And this “research that shows you may outgrow autism” consists of one study.  With fewer than 40 participants.  What’s really at work here is those early interventions and therapies allowing those with autism to be able to function more typically in society, rather than not having autism anymore.  They just hide it better.  (Won’t it be a great day when our children don’t have to hide their true selves?)

What are some other myths you’ve encountered?

Meltdowns, Blame & Brains

The glasses we found in Myrtle Beach broke.  In the parking lot to The Boy’s favorite restaurant the other night – the lens had been popping off, and it popped off onto the concrete, and promptly broke into pieces.  He flipped out, obviously upset.  I tried to quickly calm him, but it was a no go.  It escalated, and I had to physically manhandle him into the car.  Then, because we were headed home, everything was my fault.  I broke his glasses by “punching them” with my fist!  I am the “meanest mom ever”!  I “hate” my son, and “want to kill” him as soon as we get home!

Through all this I was silent.  We got home and the harangue continued for a short while.  I sat down and pointedly ignored the ongoing outburst.  He came over to me, attempting a hug, all the the while still blaming me for his misfortune.  At one point he asked what it would take to be allowed to go back to the restaurant.  I told him I needed him to calm down, and I needed an apology.  The first apology I got was pretty backhanded, and so I explained that he had hurt my feelings with the things he had said.  I reminded him that I love him no matter what, and then he apologized for hurting my feelings and blaming me for the broken glasses.  After he had calmed a bit, we headed back to the restaurant and had a nice dinner.  At one point on the way home (again), he said all of the “hims” inside his head had made him think wrong about what had happened.  I asked how many were in his head, and he said, “Millions!”  I said they’d have to be very small to fit a million little versions of him in his head, to which he replied that they were microscopic, and you could only see them with a microscope.

He seemed to be joking, but sometimes the things he thinks up boggle me.  I can’t even begin to fathom how his mind works and processes information.  There’s a video on upworthy about having “empathy”, and “what it can be like for people with autism” – maybe you’ve seen it floating around facebook.  My mom brought up a good point, saying unless it was produced by a person with autism, wouldn’t it just be an NT assumption about what it would be like to have autism?  Yes!… But then The Boy watched it and said, “Hey! That’s just like real life!”

I don’t know if I will ever get used to not knowing what goes on inside that head.

This ultrasound shot of The Boy's Brain is probably the closest I'll ever get...

This ultrasound shot of The Boy’s Brain is probably the closest I’ll ever get…

A Look Back at October

Can you believe it’s November?  Here are some of the top posts from October you may have missed: One of the Toughest Things The irony of autism is its unpredictability, when the person with autism craves predictability… Birthdays Past and … Continue reading