Autism & Wandering Awareness-Guest Post By Sheila Medlam Founder of the Mason Alert Foundation

In the last week, we have lost three beautiful children to autism and wandering. Two-year-old Drew Howell wandered from his families cottage and drowned in a nearby river. He was found immediately, but it was too late to save him. Eight-year-old Owen Black wandered from his mother's holiday condo and was found two days later, drowned in a nearby body of water. Nine-year-old Mikaela Lynch wandered from her families vacation home and drowned in a nearby creek. Unfortunately these children are not the first to lose their lives in this manner, nor will they be the last.

I became acquainted with the horrors of autism and wandering nearly three years ago when my five-year -old autistic son, Mason Allen Medlam, wandered from our home, drowned in a neighbor's pond and died two days later.

Deeply Emotional & #Autistic- how my brain processes emotions

The other day when I was in an IEP meeting the assisted communication specialist was describing a new communication book that we would be using for Beans.  She described how we would point at the pictures in it to talk to him, and not just use it for him to request from us. In other words, it wouldn't really be PECs, and it wouldn't just be a one way conversation. Most of the people at the table were confused at what this meant, why it was this way, or how to use it.  The communication specialist was trying to explain it the best she could in her technical language as it was taught to her. She was over complicating it, and missing the mark. That's when I stepped in.

I explained to them that many people on the autism spectrum never think in words, and don't interpret the world in language. Some of us can learn it, and some of us can't.  Sometimes we think in pictures, sensations, or in a way that I can only describe as intuition, because there is no word for that. When we speak to my severely ASD son with words he most likely has to translate this to pictures, or to whatever way his brain interprets things.  On a good day, some of the message might make it through, depending on how familiar he is with those words in that order. On a bad day, or day where he might be low on energy none of the message will make it through.  It will be a garbled mess.  So, when we point at the pictures to speak to him, there is a conversation going on. He is not just using his book to ask for cake, or to go swimming. He is able to 'hear' us. I might tell him that I am wearing green today, and point at the color green. Or maybe, I'd like to tell him that I think it's hot outside. So many choices, but the idea is to build on receptive language in a way that he might grasp it better.

That got me to thinking about the subject of how I interpret the world,

Cupid- The Almost Service Dog

We have a dog named Cupid.  The animal shelter named him that, because he loves everyone. He's a real people kind of dog. We got him as a birthday present for CJ.  However, soon after we got him about 7 months ago he picked another family member to turn his attention to, Beans.

Cupid is a very, very high strung dog. Full of puppy mischief, even though he's getting close to being 2 years old. He is a handful. A noisy handful, which is extremely off putting to Beans, who doesn't like noise, and too much commotion. Beans does not feel the same about the dog, as he does about him.  Beans runs away from him, and his noisy antics all day.  The dog follows him. When Beans has a meltdown Cupid runs around him in circles barking. This obviously makes Beans cry louder, and lash out at the dog. No matter how many times Beans hits Cupid, because he is encroaching on his space during a meltdown, Cupid never stops doing it.  He runs around him pushing away anyone who comes near Beans when he is upset. When a stranger comes in our home, they cannot even look at Beans sideways, or Cupid will start to bark, and push them away from him.It took a few wks before Cupid would allow our respite provider to do anything with Beans. As soon as she's play with him, he'd go nuts.  He would follow them to the bathroom for pants changing time, overlooking everything, making sure it was all cool. He even used to do that to me! If Beans tries to go out the door, Cupid will follow. Beans has never petted the dog, or acknowledged him in any way, except to toss some food his way. If Beans is eating paper, or some other nonfood item, Cupid wants to, too.  Cupid think Beans is the bees knees.  He's like a badly behaved service dog.

Be specific- How my autistic brain thrives on rules.

I used to spend hours arranging my barbies, and stuffed toys in rows.  I would take my line down again, and make a new rule for the order, and begin a new line.  The order might be by animal type, alphabetical, color, or even by most favorite to least.  I LOVED playing 'store' and would spend hours arranging all the 'merchandise' in my store.  I even made little price tags, and and sales receipts. I spent 10 times longer setting up my store, than actually playing with it.  I mostly liked playing with my brother, because he had to play my way.  I didn't have so much control over other children.  I wasn't very nice to my brother, and would often smack (I'm embarrassed to admit that!) him when he didn't obey my rules.

Now, I do this with adult things. 

My email to Bubby's Special Ed. Dept.-an example of educational advocacy

As most of you know that have been following my FB page, or this blog, I have been having some serious issues with Bubby's school.  I spoke about it some in this post, but it was vague, and more about my disappointment in the school system than about solutions.

After thinking about it, and reading the same story over, and over again by other young parents struggling to get their autistic kid's needs met, I decided that I would share the (edited version, of course) email that I sent to our local special ed coordinator outlining what has happened over the last 6 years Bubby has been at school, and what actions I have taken to resolve the issue.  The thing is, I know that we would be in a much better place if I had done this a few years ago, instead of backing down every year.  I know that if I had stood my ground things would be better now, and not such a huge, urgent mess.  The issue was, that I didn't know how.  I didn't know what to do, and I didn't know if the animosity I would certainly create in the school environment against me would be worth it. I made the wrong choice by stepping back.  I'm here to tell you, make that noise, and stand your ground.  Just do it with as much logic, and without emotion as possible. So, here we go,

Open letter to the special ed dept about Bubby's school experience.

Dear Ms. Special Ed coordinator,

#Autism & Self-Acceptance

I posted a pretty long post on my FB page about how I process emotions after I yet again, took something too seriously that my husband had said, and made a bigger deal out of it, than it really was.  This is something that always happens to me.  When I say always, I mean at least a few times a week.  It doesn't help that I have a hubby that I swear has ADHD, and everything is a joke to him.  My autistic brain is literal, and I often feel like he's making fun of me, when he is just interpreting the world in the way his brain is wired.  Anyway, this is what I wrote:

"Emotional regulation issues, and autism/asperger's. I find that I get irritated, and anxious by minor issues often, only to realize later while looking back that the thing that seemed so upsetting, or anxiety provoking really wasn't that big of a deal in the first place. I sometimes am embarrassed about my overreaction to seemingly insignificant occurrences, and the anxiety about how others might view me in light of my meltdown, or the anxiety about it happening again will keep me from trying new things, and socializing, if I let it.

As I have gotten acquainted with ASD, and what it's all about I have become aware of the reasons behind this phenomenon. One big one is weak central coherence (inability to see the bigger picture) and the other two are executive functioning issues, combined with difficulty in detecting, and describing emotional states. It's hard for me to see the bigger picture when I see something that goes wrong in my mind. I lose sight of how to get it back on track, and struggle with understanding how to deal with mounting emotions.

The last, but least of these triggers is, the deep down fear that I am being judged harshly by others, and won't/don't measure up. I think this reason is one that most, on or off the spectrum can relate to, but for those of us that seem to get things wrong so often, self-doubt is often a big obstacle to overcome when trying to regulate our emotions. I can lash out defensively, as if I deep wound has been ripped open, because in some ways, for me it may feel like it has. Learning mindfulness, and lot, and lots of opportunities to learn self-acceptance has helped a lot."

 

Then someone asked a million dollar question: How do/did you learn self-acceptance?  Can you give some examples of that?

Inner #Aspie Celebrates '1000 Ausome Things' #Autismpositivity2013

When I heard of the Autism Positivity Flashblog 2013- 1000 Ausome Things
event, I thought it was a great idea. I participated in last year's event
'I wish I didn't have Asperger's' and wanted to make an entry for this year, as well.

I have, however  run into an unexpected writer's block.  I thought, and I thought.... What should I share that would let the world wide web know how awesome I think autism is?  Then, I hit a wall.  It's the wall I often hit when I am thinking of broad subjects. My brain tumbles around trying to grab a concept, but I don't think in big sweeping concepts....So, here I am last minute, rambling about autism.  Sounds, like my life.  I'm always a bit late to the party, and all I have to talk about when I get there is autism, because it makes up such a huge part of my life.

Then it hits me.

Breathe

I woke up this morning, and had that feeling that I was forgetting something. You see, my calendar has nothing on it for today, and I'm sure that can't be right.  I must be forgetting something important. No meetings, no important paperwork to do, no errands to run.... it feels wrong.

I then recall that I have to go to the store for some bread, and print some invoices for my husband. Oh, and I probably should email the boy's developmental disability case manager about some upcoming IEP meetings, and ask what paperwork she was needing. I also need to be sure to have things ready for tomorrow's appointments, and I recall that my father in law is visiting this weekend..... Now, I am feeling a little more in my element. This feels more like my life.  I'm used to the uncomfortable busy-ness that surrounds my daily routine when at heart I am an introvert that would love to read, and write all day in a quiet garden, alone.  The state of discomfort has almost become my norm.  This has become almost me.  Autism has permeated almost every corner of my life, and I'm not sure how I feel about this.

Sensory Friendly Cooking on a Budget- Garlic Bread

Today's post is continuation of sensory friendly cooking on a budget series.  This idea is a simple, but effective one that gets a couple of my picky eaters buy in on meals that are less than fab to their taste buds.

It's garlic bread! 

Here's my basic recipe:

Lessons I Have Learned As An #Autism Advocate

Yesterday, I learned some valuable lessons at Bubby's IEP meeting. Most not good, and some even carry with it an abrasive ability to leave me jaded, perhaps forever.

I learned that right isn't always right. This might seem like an odd statement. It's contradictory, to be sure.  What I mean by that is, logical sense, data, and proof doesn't always get things moving in a sensible direction. People may say, but the school has to do this, or that. Yes, in a perfect world, where people didn't come saddled with baggage, and ulterior motives when the moral, right, and data-driven initiative is revealed it is accepted as fact, because it is fact. I learned yesterday that I can sit in a room with nine people, and one person can effectively shut the whole meeting down with such intimidation, even with seasoned professionals involved.

I learned that some people will always see any deviation from the norm as wrong. 

How I Experience Empathy

For a couple of years now, I have wanted to write something about autism, and empathy.  I wasn't sure what, though.  I (as usual!) don't fall into the same belief system as anyone else I know of about this subject.  I find most views to be be extreme.

On one side, I see the ones that think we have no empathy, or at least the typical capacity for it.

Then , the other that contends we have too much to the point we're all empaths.

I don't believe either of those to be true for myself, or my boys from what I have experienced, and known of ASD. So, where does that leave me?

Aspie Negativity

This is a stir the pot kinda post.  You've been warned now. If you're not in the mood for thinking about broad issues, then you might not want to keep reading. If you think you can keep an open mind, then keep reading. If comments get out of hand I will have to moderate them.  Please, don't make me do that by leaving nasty comments. Thank You!

There is this thing that I see happen often among autistic people. As with everything, it's not black, and white.  Not every autistic person does this, and NTs can do it, too, but I find it to be a very, very common trait among autistic people.

Basically, it's not seeing the forest for the trees type of thinking. It's the idea that if one tiny thing is wrong (in their eyes) in a vast quantity of right, the wrong is still worth bringing up, and making a big deal about it.

Goal Setting-coping skill for Adult #ASD

After writing the Dear Self, entry yesterday I have been pondering on how I can care for myself better.  I simply don't accept that autistics, introverts, and worriers have to be discontent much of the time.  I don't accept this for myself, anyway.  I genuinely do want to be happy, content, and fulfilled. I know that I can't be if I am always tense, and worked up.

So, I thought about it.

What is causing me to feel so under pressure?
Other than my natural state of being a perfectionist, I'd say stress.

What can I do to help alleviate it, then?
Not much to make it go away. My life is my life. Things have to get done, and I have to do it.

But, then I wondered if I could possibly manage my stress differently?  Maybe, it can't go away, but could I rearrange my day, and the way I look at it?
I think I could. I think my issue is not my level of stress, as much as how I manage it, and feel burnt out at every turn.

So, what would this look like?
Maybe, less time on the computer doing meaningless tasks, like checking on emails, FB notifications, ect...  I could also start setting more structured goals that are actually attainable.

Dear Self,

Today is one of those days that my mind is not my friend.

The bottom of all of my fears, and obsessions is that I am afraid that I am not good enough. Okay, is not good enough.  Good is not good enough. Less than 100% perfect in all areas is not good enough. Rationally, I know that no one is 100% perfect in any area, much less overall. This does not quiet my anxiety, and compulsive thoughts that sit in the back of my mind voicing their opinions to me in quiet whispers that build all the day long, until evening comes, and I am too tired to fight them anymore.

I wonder what it is like to not think all the time?  To not measure everything you do with some unnatianable model of perfection you know you'll never reach?  To not have to weigh, measure, and hate yourself for not reaching your weight goals every.goddam.day. Then changing it again, when you do. To not end each day with thoughts of how you'll be a better person tomorrow. Each night, I think I will do better on my diet, on my exercise, on how clean my house is, on how better of a parent I will be, on how better of everything I will be.

Because, I can. If I try harder.  I will be better. I will be worthy.

And, so I walk through today, fighting my demons wondering what it would be like if I didn't have any.  If I was okay with what I am right now?  What if I were okay with imperfection?  The thought takes my breath away in anxiety.  Lowering my standards for myself is a scary thing. What if I will suck, but not know it, because I am allowing lazy, and who can stand lazy people?

Today, I try to let it all go...in this nonsensical post.

School Update

As promised, I am updating about the school situation with Bubby.

I won't give you a run down of who said what, and a play by play, because that takes too long, and is frankly boring to read.  It went, overall , well.  As requested, the behavior consultant, and the autism specialist attended, as well as Bubby's special ed teacher.  This wasn't really a strcuctured meeting, but rather a forum to throw out ideas, and strategies to take to the IEP meeting, so that we can amend the IEP appropriately.  Normally, we would not have to hold a full meeting to amend the IEP, but since the staff seems to never be on the same page we will have a full meeting.  I think the date was scheduled tentatively for the 25th, with the understanding that much of what we discussed would be put in place immediately.

We decided that it would be best at this time if Bubby never had any homework to take home.  Instead, we found a space in his day where he could work on any unfinished work he might have at school.  If there is no unfinished work, then he might  have time to relax, and do something fun. This is going to make the rest of the team mad, because they vehemently disagree with the idea of no homework. 

Mindfulness In Adults With Autism Spectrum Disorders-Guest Post

Guest post by: Dr. Annelies Spek. She writes at : Autism and Minfulness.org

Information about the author:

Dr. Annelies Spek is clinical psychologist and senior researcher at the adult autism center in the southof the Netherlands (Eindhoven). Her Ph D thesis was entitled: cognitive profiles of adults with high functioning autism (HFA) or Asperger syndrome. Now she examines the effects of treatment in adults with autism. She also gives lectures about diagnosis and treatment in adults with autism.

Furthermore, she gives mindfulness training to adults with autism and she developed a training program for clinician s (who work with adults with autism) on this subject. For more information about (mindfulness in) adults with autism: here- mail address is anneliesspek@hotmail.com

The original book ‘Mindfulness in adults with autism’, has not been translated in English yet. If you would like to be informed about this in the future, send me an email. If you have any ideas that might help to have the book translated in English, please contact me!

anneliesspek@hotmail.com

Kind regards,

Annelies Spek

_____________________________________________________________________

Introduction

Autism is a lifelong developmental disorder that affects functioning in multiple  areas. Recent studies show that autism is often accompanied by other psychiatric  symptoms, including depression, anxiety, hyperactivity, inattention and distress in general. Evidence suggests that depression is the most common psychiatric  disorder seen in autism (Ghaziuddin et al., 2002). Especially adults with relatively high cognitive ability seem at risk for developing symptoms of depression, possibly because they are more aware of expectations of the outside world and their inability to meet those.

Symptoms of depression in adults with autism seem different than in other individuals, ranging from irritability to an increase in difficulty with change and sensitivity for sensory stimuli (Ghaziuddin et al., 2002). An important aspect of depression and distress in people with autism is the tendency to ruminate. This can be described as a drive to think repetitively and experiencing difficulty to let thoughts go. For instance, adults with autism often lay awake at night, pondering about the events of the day and analyzing those in detail. The tendency of people with autism to ruminate appears related to the detailed information processing style that characterizes autism.

Revisiting an Old Special Interest-RIP Kurt Cobain

Nirvana was one of my first, and definitely the strongest to date of my special interests. I typically didn't speak to many people as a teenager. It was such a tumultuous time for me. Full of misunderstandings, and parents that couldn't, wouldn't and didn't want to deal with my differences. The subject of music, particularly Kurt Cobain was always a way for people to get me engaged in conversation with them. When my husband had long hair he strongly resembled Cobain. This is how far my special interest went! Nirvana's music got me through a lot of hard times, and for that I am grateful.  Hard to believe it now, but today marks the 19th anniversary of Kurt's tragic passing. In remembrance I share with you my favorite Nirvana song: Lithium- "I'm so happy, because today I found my friends. They're in my head"

Square Pegs and Civil Rights

I mentioned some school issues with Bubby in the post before last  New Places & Trying New Things.  I left everything kinda up in the air during that post, and promised a follow up.  So, here it is.

We did make it safely to the new counselor's office, despite sleet, blown tires, and broken windshield wipers.  The counselor was very nice, and appeared to have a good understanding of autism.  I was really nervous that she would either a). not know much of anything about autism, or even more so Asperger's. Or b). think that I am one of those moms that like to make a big deal out of nothing, and doubt he is autistic at all.  So, I was relieved when my fears were baseless in reality. I think she and Bubby will get along great, and I look forward to continuing to see her.

So, that is a super positive in our corner.

The behavior consultant observed Bubby for the second time yesterday, and called me as I requested to discuss what she thought. The first time, it was all rainbows, and flowers. That worried me, because even though I know 2/3 of his day is pleasant as she observed, there is the 1/3 that is not, which is the third that is causing serious issues.  This time when she observed it must have all just lined up right, because she was able to see his every button pushed, and severe meltdown ensue.  I was not the least bit pleased at the meltdown in, and of itself, but that she was able to see it unfold. It's hard to write a behavior plan, and make recommendation on a student that you've never really seen the problem "behaviors".  We discussed several things that may help on the phone.  She also disclosed to me that she will be meeting with the special ed. teacher tomorrow to discuss with her what her thoughts were.  I sent an email, and invited myself to the meeting.  I'm sure the special ed teacher is less than thrilled with that, but at this point I feel I must get pushy.  The behavior consultant also disclosed to me that she had at one point asked the special ed teacher if she would like for the county's autism specialist to come out, and do some training, and that idea was turned down. That did not make me happy, so I have called the autism specialist myself, and am asked for her to consult with the behavior consultant to decide the next steps should be. I have met the autism specialist a few times, and she is a bit abrasive, and difficult to get along with in a lot of ways, but I am desperate. This may backfire on me, but I have to take that chance. I asked around to people that have worked with her before, and the general consensus is that she does not work well with children, but is great at putting together plans, and training. So, I am feeling like bringing her into the picture is worth the risk.

So, at this point it is just a lot of research, and searching out the right people to help me help my son.  The local advocacy center didn't have anymore ideas, than the ones I am already pursuing.  I sometimes think I ought to get a job there. lol  I am scouring our state's ed. website, and printing pages that speak to the issues we are having, and what the law says about Least Restrictive Environment, Behavior Plans, Present Levels of functional Performance, ect... I am also searching through Wrightslaw site to determine what actions I need to take, and what actions have been successfully taken by parents before. I am printing out documents of such court cases.

I feel like I am doing all that I can to ensure a proper education of my son in a regular ed environment. It may not be easy, but it is necessary.  If all else fails, I will homeschool him, but that is last resort.  To me, I am not just fighting this fight for him, but for every disabled child that comes through our tiny town's education system.  They try to break them to fit them into what they want, and if they can't they send them to special classrooms in another town. Nope. Not happening here, if I can help it.  He deserves to have a place in school, just like anyone else.  He also is well liked, and accepted by his peers.  It's the adults that are the issue here.  It's time for outmoded beliefs, and ideas to get an update. 

What's an Obstinate Aspie To Do On Autism Awareness Day?

Today is Autism Awareness Day.

I posted this on my personal page in regards to Autism Awareness month:

"April is Autism Awareness month. I usually join in, but this year I don't think I have it in me, unless I am to somehow gain some momentum outside of dealing the pressure that I am under from so many areas, mostly the school who is autism unaware, and fine with that unawareness. Willful ignorance is probably a better description. I am done with what seems to be me preaching to the choir, because they're the only ones listening anyway. If you want to know more about autism, and are not already on my autism page, or aware of my blog, let me know. I can direct you to all the information you could ever want to know, but I'm done spinning my wheels trying to make others get it, that never will. I'm too busy making sure my boys have a better chance at life than the autistics that went before them. I don't have time for the petty ignorance of who has the right to say what, or wearing certain colors for this or that. It's time to move up and onward. Only action oriented advocacy can do that, and my actions start at home with my family. My sons, especially Bubby, need my focus to be on them, and their rights. Making sure they are taken care of, has a fair education, and is treated with respect is my contribution to the autism community this year."

This is pretty self-explanatory in what I mean, and why. But, there is another reason why I don't participate in big organized events. One more silly, and one that I don't think I understand, but it's a tightly held character trait, nonetheless.

I'm completely oppositional.

New Places &Trying New Things

I thought this might be a good day to bring back some more journal type of blogging. Sometimes, it's nice to blog in a more structured form where there is a clear beginning, middle, and end to the whole piece.  Those kinds are like essays, and they have their place in the blogging world, but then there's something to be said for the freestyle of writing that flows naturally from the writer as if you were having a conversation with them. It's a really authentic way to write, because readers can really feel they know you, and are a part of your everyday life, whereas essays type writing, while passionate, can be a bit colder. Soapbox persuasion is meant to express a particular point of view with a means to explain, or persuade, rather than to just discuss.

So, to kick off autism awareness month I am here to just write about my experiences. I may get an idea in my head later on about a good topic to write about, but right now I am too busy living my life, and doing what I do to really do much more.  Autism awareness is something I engulf myself in everyday.  April is not different in that for me. My page, this blog, and my advocacy at my boy's schools is what I do for autism awareness everyday.  Sharing some social media photos, and wearing blue is not autism awareness to me.  It does not do anything to change the current status of how autism is viewed.

So, here we go... Today, we have an appointment with