I’m Tired

dogasleepI’m tired of responding to emails about The Boy refusing to do his work, or clearing up miscommunications about tests and modified due dates.  I’m tired of having meetings that go on and on about how he has basic characteristics of autism.  Yup… We knew that already.  I’m tired of people who apparently don’t have a dictionary or basic internet access, and still don’t understand what a modification is, or what autism even is in the first place.  I’m tired of teachers trying to penalize him for “refusing” to do his work.  I’m tired of receiving an email that sends me into a frustrated tailspin for the rest of the day.  I’m tired of teaching my son about Egypt and minerals because for some reason they just don’t know how to teach him this stuff at school.  I’m tired of politely telling them how poor their assessments are, for any child.

It’s overwhelming, and it has become my full-time job.  And it can’t be.  Pretty soon, I will not be available at their beck and call, and I will not have hours to prepare lessons for my own son.  Because I need to work for real, and earn real money ASAP.

I know he is one of the 70 kids you see in a day (and don’t try to tell me you have more, because you don’t.  There are only 70 sixth graders in the school).  I know you feel like you don’t have the time to spend on this one child.  But if there’s one thing you should have learned over the span of your careers is that the amount of time you spend on each child will never be equal.  Some kids need more of your attention, and the equitable thing to do is to provide it, instead of throwing your hands up in the air and saying, “I just don’t know what to do!”

The internet is an amazing thing.  You can find YouTube videos on just about anything.  Hell, I don’t even teach PE, but I was able to find a resource on how to provide accommodations to students with special needs on the President’s Physical Fitness Test by simply typing all of that into my google search bar.  It took me less than 10 seconds.

I just spent an hour searching “autism work refusal” and got some really helpful information from a bunch of sites.  It’s not all helpful, but the search provided ideas for how to engage students on the spectrum who will not do classwork (and who won’t even show up for school), rather than punish them, and “hold them accountable”.

My kid loves school.  My kid thrived in his old school.  My kid has adjusted so incredibly well to the structure of middle school.  They have so much in their favor, and they still can’t make it happen.

I can’t make his teachers want to help him, and I can’t help him all on my own.  This is my conundrum, and this is why I’m tired.

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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

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.

Don’t Live in Fear of the Meltdown

I write this with the disclaimer that it is addressed to myself, as well as everyone else living with autism in their household.  I am painfully aware that this is an area of challenge for me, and I write this post with the hope that I will refer to it often to remind myself not to succumb…

This image was selected as a picture of the we...

We bristle when people tell us that our children are “just spoiled,” and rightfully so.  The ex was convinced that my “coddling” of The Boy was his true diagnosis, not autism, and that if we just spanked disciplined him more, he would behave “better”.  This post is not to suggest that any of us are too lenient on our children.  No one knows our children better than we do, with the exception of the team of people that most of us have, the therapists, teachers and caregivers that help us raise our special, special children.

However…

We also pick our battles.  And you have to.  If he chooses a pink shirt and orange shorts that are way too small, we may just have to go with it because at least it’s not the pajamas he has worn for the past six days.  Refuses to eat vegetables?  That’s OK for now, because pizza is better than a diet of ice cubes…

But…

Especially as a single mom, I fell into a bit of complacency.  The anticipation of a meltdown would influence my decisions too much to the point that I was bending farther than I should.  And it wasn’t until I started dating The Man that this was pointed out to me.  At first I was furious, thinking he was telling me how to raise my son.  But he wasn’t.  He was just pointing out that The Boy really didn’t need to sneak that giant sucker into his room to eat right before dinner, and that it really was my job to call him on it.

Oh…  Yeah…  I’m the adult.  (Duh!)

And I have found that if I am consistent about calling him out on little stuff, he is less likely to get really agitated by it.  Last night, The Boy’s iPad time limit (instituted until he “pays back” his half of the repair bill) ran out, and he started to raise his voice when I insisted on taking it from the room.  It looked like he was going to blow it, but after some (albeit loud) whining, he accepted it without much further ado.

My suggestions are to avoid complacency and shoot for consistency.  All kids crave some structure.  The more consistently we provide it, I think the fewer big meltdowns occur from being called on what is actually poor behavior.  That’s my theory, anyway.

Now if I can just remember this 24-7…

Moving House: The Boy

You are probably wondering how The Boy has done, seeing as autism and any kind of change don’t generally mix well, and moving house is a change in a league all of its own.  The short answer is that he has done amazingly well!

Here’s what I think helped:

Grammy and Poppy were there to help ease the transition.  The Boy loves his grandparents, and they are a constant in his life.  Having them come up to help with the move helped remind him of what he had to look forward to — more time with his grandparents!  They are also a little less threatening than Mom, so Grammy helped him pack up his room, which calmed his fears that we were getting rid of all of his stuff!

Preparation.  We’ve been prepping the Boy for almost a year, first introducing it as an idea, and then gradually replacing the “Wouldn’t it be cool if…?” with “Won’t it be fun when we…?”  We addressed each of his fears as they came up, and made sure not to make light of them.  We also spent a lot of time focusing on the positives.

The Moving Book.  Anytime I heard him start to fret about the move, I made sure to pull out the moving book (or at least made a point to remember to do that at a quiet part of the day).  It really did seem to calm his fears, I think because it worked as a visual cue to address his fears and remind him of the positives, and visual cues really work.

Addressing his biggest fear ASAP.  One of The Boy’s biggest concerns was missing his ESY program.  As quickly as I could, I found a similar program in our new state.  Because of the timing of our move, I didn’t think I’d be able to get him into one provided by his school district, and truth be told, finding one that was going to be the right fit was a bit of a challenge.  But in a totally coincidental way, we (I say we because Grammy helped a bunch on this front) found a summer day camp for kids with autism and their siblings in our new area that was relatively affordable and got him enrolled ASAP so that he would have a replacement for the program he cared so much about.  He went from whimpering about missing ESY to being excited about Camp SMILE.  And because he attends daily, it is a new and immediate routine, and provides him with an opportunity to make new friends (one of his other biggest concerns).

His room is still full of boxes, as most of them are, and he’s been wearing his new Spongebob hoodie just about everyday (he tends toward clothing exclusivity when stressed), but he really has made an excellent transition, and I am so proud and happy for him.

moving!

The Moving Book

Tonight, The Boy turned to me and said, “Why do we have to move?”

change goodIt just about breaks my heart, because I know on the inside, he is still adjusting to this very big change I have foisted upon him, although on the outside he has been a trooper.  And even though we have talked, and talked, and talked about this for a long, long time, I know it is still hard for him to understand.

A long while ago, I came across the suggestion to make a book about the moving process so that The Boy could have a resource to refer to when he was feeling anxious or unsure.  My lovely mother helped me flesh out the idea, and even did some of the legwork for me, taking pictures of his favorite places in our new area to include in the book.

My goal with the book was to acknowledge his fear, but accentuate the positive.  Tell him what exactly will change, and what will not.  Include pictures of familiar things in our new home and community, and pictures of good times with The Man, and with his grandparents.

I’ve been working on his book for awhile, and I shared it with him tonight, hearing his anxiety once again in his honest question.  We read through each page, and he looked at the pictures.  When we were finished, he was at least smiling.  I asked if he felt better and he said he did.

If you’re going through a move with an autistic child, I highly recommend the National Autism Society (UK)’s page, and a couple of other resources listed below.  You can never begin preparing your child too soon, and creating a moving book is one strategy to help calm those moving anxieties that I think will be so helpful!

Tips for Making a Move More Successful – Different Roads

Tips for Moving with an Autistic Child – Elsia R. Sebastian, Yahoo

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.