not many like mavericks… not even ppl who profess to like them really do… cos for most ppl, mavericks feel like a toilet brush stuck up their arse…

yes i m a maverick in many ways… i say the darnedest things… blunt, honest, bold, raw and passionate – lethal mix… and not many can stomach the truth shoved into their faces with gale force gusto i guess…

so i did it again… i babbled on and on abt what i thought of modern ‘church worship music’… nay i shall not put it down here, i m just too too tired tonight and feeling very sad… some of the hymns i love were written by ppl who never thought to make a single cent from their music – music, especially music made as an act of worship, shd never have a price tag on it… becos worship, and art created as an act of worship, is priceless… artistry itself is a form of worship, and an expression of the spirit and soul in conversation…

but sadder still… the cold stone wall that my passionate ramblings ran smack into… but i shd hv known better… i m too much of a maverick for her… she wld never understand… even tho she has known me all my life… she still doesnt kw me at all – perhaps becos she doesnt want to, for that will mean stretching beyond her comfort zone… so she pretends… but i cannot carry on that pretense… this maverick has chosen to live out in the light of her own convictions and dance to the beat of a very special rhythm…

Here comes Acronymous Bosch again …

My head was making that *vzzzt* noise it does occasionally; very subtle, very not nice.  That after a couple of weeks (added to a life) of stress, panic, thumping myself in the head, social phobia … fear and fear and yet more fear.  I was walking to a mate’s house for his birthday dinner through quiet streets, feeling like shit, dangling a bottle of red wine to contribute and I kept just wanting to growl and hit something (me) hard with it.  Got through the evening alright, well, it was pretty quiet.  As soon as I left to walk home, I started weeping again – tears more jumping off my face than sliding.

When I got home, I took a 25mg Seroquel and went to bed.  First I listened to Beck – Sea Change, then I listened to R.E.M – Automatic For the People (which is what I played incessantly when my brother died all those years ago) and at some point, I fell asleep.

I don’t know why I’m feeling such huge panic about not fitting in now – I’ve never fitted in to the mainstream and it should matter.  Why does it matter so much right now?  Why is it so sore?

{queer.gender-non-conforming.ptsd.autistic.fucked}

The Washington Post (http://tinyurl.com/autism-classes 12/3, Brown) reports, “As the number of children with autism has ballooned nationwide, so has the population of children who…are capable of grade-level academics,” but who lack “social and emotional skills they need to negotiate school on their own.” Many of these youngsters “spend the bulk of their day in mainstream classes supported with a suite of special education services.” Now, “many parents of this growing group worry that” mainstreaming “children…this way fails to teach them what they need to navigate the world independently and instead imbues them with a sense that they’re unacceptably weird.” The article goes on to describe alternative programs offered by Washington, DC-area schools to help children with mild autism acquire social skills.

These are the worst Asperger's forum logos (IMO), ranked from best (the best looking) to worst (ugliest):

1. ZomgAspies – ZomgAspies' logo isn't so special, but it still takes the top spot.

It may be surprising that ZomgAspies would take the top spot here, considering that the ZomgAspies users don't seem like the type of people who care about aesthetic-quality. This mainly takes the top spot because it doesn't look like it was designed on computer software from the 80's.

2. WrongPlanet – Some people will hate me for making this second.

The WrongPlanet logo is so/so; it looks unique, and doesn't look like it was designed on computer software from the 1980's, but it still isn't fantastic. The logo is a lot better than the next two logos I am going to post.

3. Spectrumites – I don't know what the Spectrumites staff were thinking when they decided to use this logo. The logo looks like it could be an ugly banner-ad from the early 90's that you'd randomly have show up on your monitor telling you that you've won ten million dollars; it looks like it was designed on computer software from the late 80's/early 90's. Hell, I probably could have made this logo on the Commodore 64 I used to have!

"Spectrumites! You've won ten million dollars! Now give us your home phone number, your address, email address, and where you work! By the way, did we mention that you get to go on a cruise next week?!".

4. AspiesForFreedom – I don't really think that much has to be said about this logo.

Like the above logo, it looks like it was designed on computer software from the 80's/early 90's. Somehow, this logo lacks even more aesthetic-quality than Spectrumites' logo — which is unfathomable to me (maybe Spectrumites and AspiesForFreedom had an ugliness competition?)

Posted via email from HikiCulture – A Forum for Reclusive People (and Hikikomori) {hikiculture.com site blog}

There was some talk between myself and others hanging around Twitter the other day, about stimming on lights.  Well, to any Aspie/Autie, hell…anyone on the Spectrum, stimming on lights is not news!

PA loves to stim on lights! Lots of other shiny objects, too! PA loves to stim on a lot of other things, but for the sake of brevity, let’s just leave it at lights for now?

PA is also a very bad girl when it comes to toys! Very bad! There are times when you can take her into Toy Stores, and she might actually need to be restrained!!!

I have been wanting to toss up this Post on my blog for a little while now and tonight, I barely managed to get the shots done! My battery was dying and I didn’t even have enough time to futz around with a tripod or…  I did them by hand and surprisingly, they turned out alright? I think? Hey, maybe even better without a ‘pod as you get more of a “stimmy effect!” *grins*

So, okay everybody! Let’s Stim! Stim! Stim!

Who Likes Blue?!?!

This is my “Fibre Optic Fountain!” It’s sitting atop a bunch of other stacked, electronic stuff so it’s sort of like a “Geek Monument.”

Of course, it’s a total “Spazzy Asperger’s Monument,” too. *laughing*

Okay, hang on for these babies.  I’m lucky I didn’t give myself a Photic Seizure shooting the pics here.

WHOA! LOOKA ‘DAT!!!

But wait! There’s more!

Are you transfixed yet…?

*PA at peace*

I’m sorry, but I just have to say that I love the above picture…

And finally…this one may be a bit blurry, but we on the Spectrum don’t care how blurry our eyes get–not when it comes to shiny and pretty things!

Now, you all may be wondering what is this thing? What could it possibly be that generates all of this beautiful, wonderful, gorgeous, outstanding, brilliant, shiny goodness?!

Well, it is this:

We all have our own way of ordering our world. Each of us has secret code in our heads that allow us to figure out where we are fitting that moment into the greater spin that earth is in.

As a child, I had some strange ways of figuring out language. (Maybe I’m a little more like Colin that I realize). Nouns were the most important letters in our alphabet. Letter “E” was king and should begin each word. After that, each noun, in the order that they appeared originally. Then, the bad consonants in the order they appeared in each word. This drove my mother crazy since I would ride in the back seat of the car mindlessly spelling words on the billboards as we would pass. Only, I was doing my “thing” with them. Finally I had to explain it to her (and SILLY her for not figuring it out on her own.) I think I was four.

For example: “Restaurant” is really spelled “eauarstrnt”. The word “house” is “eouhs”. “Beetlejuice” should read “eeeeuibtljc” (that was a fun one!).

I also believed that all dogs were boys and cats were girls.

Mondays were blue, Tuesdays were yellow, Wednesdays were green, Thursdays…red. Friday? Green again. Saturday was black and Sunday was purple. That still holds true sometimes if I don’t stop myself.

A few weeks ago, I was walking Erin and Colin to the school bus stop. It’s only about a two-minute walk. We hold hands and talk about what the day holds because if Colin doesn’t know what to expect, then he’s really anxious.

The day wasn’t hot or cold. No rain, no sun, just sort of an average fall day. It was a Wednesday morning and nothing special was going on in our neighborhood that day.

“It smells like Sunday, Mommy.”
“Really”
“Yes, it’s Wednesday, but it smells like Sunday.”

He actually stopped and looked around for a while. Whatever he was looking for wasn’t there, but his nose could pick it up. Maybe someone was burning a fire, maybe there was a roast in an oven, maybe no one will ever know what it was.

“Okay, it smells like Sunday. Is that okay?”
“Um, yeah, I guess.”

He walked a little slower to the bus that morning…looking around him the whole time as if anticipating something new. Like, maybe we should be getting ready for church instead.

I’m okay with Sunday having a smell, dude. As long as it’s okay with you that I think it’s purple!

Penelope Trunk wrote an excellent and heart-tugging piece about Asperger’s Syndrome and how it affects her. It is a poignant piece that describes her thought processes, and how a day at the bureaucracy puts her into a tailspin.

I had no idea that she had Asperger’s Syndrome; Richard Stallman (rms) – the person behind the GNU Project and the Free Software Foundation – is supposed to have Asperger’s.

A disability such as this is hidden and its effects can be unknown; this leads to a lack of understanding of how a person with such a disability may find themselves hampered in their daily lives (including work lives). Disabilities such as Asperger’s, dyslexia, and others can lead to people not being compassionate or sympathetic when this is what the sufferer needs most.

I hate having a cold.  I’ve been with this cold since November 24 when I was flying down to Maryland for Thanksgiving.  Thanks to this cold, I haven’t been able to do much blogging this week.  Also, I haven’t been able to  decorate my condo for Christmas decorations.  My tree isn’t even up yet.  It’s very frustrating.

I hate having a cold.  It just throws everything off for me.  It’s hard to focus on a lot of things I want to do.  It’s hard for me to be organized sometimes.  I hate that most of all.

Too many distractions.  Hopefully, next week will be better.

Every morning I read the posts from every special needs site listed on my blogroll. 

In fact they are the reason I started to blog. 

I am amazed at how much the blogs I read touch my heart.  I would have never guessed that a stranger’s story could affect me so.  But I think that maybe we are not strangers, that we are all mothers bound together by the array of issues that our children face.  I can’t put into words what it means to know that I am not alone on this journey, to hear my most inner thoughts and feelings voiced by someone else.   I am so thankful to God for guiding me to these blogs that continue to help me through what is proving to be one of the hardest things I have ever faced.

Katie* is the only girl in Diego’s social skills group.  She is quite the popular young lady surrounded by 10 little boys, 3 of which have a particular penchant for girls in general (Diego included).  In fact one of the moms threatens “to tell Katie” about her son’s behavior to get him to act right and it works!

Brilliant! LOL

When we first started the social skills group, Diego would sit next to Katie (bowling over anyone that got in the way), picked Katie as his friend when the activity called for it, put his feet all on her lap whenever he could get away with it, and we won’t even go into how he would sneak in the ear grabs he is all too famous for!!  Katie indulged it for a bit but was soon over it.  After a few sessions, Katie was moved to the other group for balance (she is one of the neuro-typical peers) and so when the kids are separated she is no longer there for Diego to obsess over.  As a result of this Diego has pretty much forgotten about cutie pie Katie.  But  the kids are all brought together for their sharing group.

Rickey takes Diego to his social skills group on Thursdays and when I got home last night I asked Rickey how it went.  Rickey told me that Diego had some issues with sharing and getting angry.  So later on I asked Diego about sharing.  His response??

“Katie brought ponies”

huh?!?!

So I asked him again….

“Diego did you have some trouble sharing blocks with your friend today??”

“Katie brought ponies”

At this point, I got it,  he was referring to it being Katie’s share day.

“Oh ok Diego. Katie brought ponies today to share with you guys??”

“She brought 2, they were pink.”

Diego isn’t looking at me and his tone is flat and completely uninterested, but I think I detect a hint of disgust on the word “pink”.

“Ponies are for girls”

“Boys can play with ponies too D”

“No ponies are for girls and she brought a brush.”

“Oh she brought a brush to fix the ponies’ hair?? Did you brush the ponies’ hair when she passed them around??”

“I told you! ponies are for girls!”

He was getting frustrated, we often have this boys toys vs girl toys talk and he doesn’t budge not matter how hard I try. 

Awwww sweet rigidity

“So you didn’t like share day today??”

At this point he was way over the conversation and didn’t answer me.  

I remember one time watching him play with a baby doll at school and being so excited that he was playing with a “girl toy”

 She crashed into everything. 

All of his toys crash into something.

What did I expect?!?

Did I expect that he was gonna feed and rock the baby doll?!? 

HA!

I know a bit better than that.

*name change for privacy*

I go out to lunch once a month with a lovely group of parents, we are all members of a support group for parents of children with special needs.  Our local Neighbourhood Centre provides free childcare so that we are able to go to our monthly lunch without children. It is a fabulous opportunity to exchange ideas, give each other support and enjoy a meal without interruptions.

Yesterday one of the mums was talking about how she’d had to give out 3 of her cards this week after months of not needing to use them.  Curious I asked what the cards were and she handed me this:

From Dec 09

on the back it says

“People with an Autism Spectrum Disorder find the world a confusing place to be. They need a lot of assistance to help interact with people and understand what to do.

Sometimes their behaviour becomes quite extreme, which is their way of telling us how anxious they are feeling.

If you would like more information about Autism Spectrum Disorders, please contact Autism Victoria.

1300 308 699 or www.autismvictoria.org.au“

Which is the perfect solution to my airplane card idea that I was blogging about recently.

This is sort of old news by now but it is still an issue that has not been resolved. What do you make of the DSM-V’s (Diagnostic and Statistical Manual of Mental Disorders) controversial proposal to eliminate Asperger’s as a term to be used for diagnosis? I would like to generate a discussion on this. Just to clarify, the DSM-V is not proposing that those who would normally be diagnosed with Asperger’s do not receive a diagnosis at all; they are proposing that the term “Asperger’s” be replaced with “mild Autism”. In other words, rather than viewing Asperger’s as a unique subset within the Autism continuum, the DSM-V is proposing that all of Autism should be rated on a scale from mild (a.k.a “high functioning”) to severe, and Asperger’s would subsequently be known as mild-grade Autism. That is my understanding on this anyway. This is an interesting argument to make. What do you think about this proposal?

The next issue we’re going to discuss is self-stimulatory behavior, which is one of those terms that’s so tremendously opaque to people not familiar with autism. In the song “Shiny House,” we tried to give a sense of what’s involved, and how compelling the attraction of these behaviors can be.

You can preview the song here.

Here is the commentary we have up on The Issues section of the Learn page.

Where do these children go when they turn away from the world? What’s going on in their heads when we can’t get through to them? One of the key phrases in the clinical description of autism is “a propensity for self-stimulatory behavior.”

These are behaviors whose result reinforces an urge to repeat them. In extreme cases, this can involve self-injury – biting, scratching or head-banging. Often it’s behavior that produces a strong physical sensation, like spinning, or constant perceptual feedback, like hand-flapping or finger-picking.

It can also involve more subtle, passive behavior – staring at a fan, or seeking out reflections. With our son, it wasn’t until a teacher pointed it out that we realized how much of his attention was absorbed by “stimming” off shiny surfaces, even those that caught the faintest of reflections, like a banister or the screen of a TV that had been turned off.

Such behaviors can serve as a coping mechanism, drowning out or reducing sensory input that is being experienced as overwhelming. But it can also drown out the inputs needed for healthy cognitive development, in particular, the typical child’s focus on the face and eyes.

Within minutes of birth, most children can distinguish faces from other kinds of objects, and show a preference for faces and for eyes in particular. That preference is self-reinforcing; the more children look at eyes and faces, the more powerful they become as avenues for communication and connection. In time, the normally developing brain begins to recognize faces as a unit, rather than as a collection of parts, using a neural pathway that’s faster and apparently more powerful than most.

People with autism generally never develop that ability. They continue to use the same “piece by piece” recognition mechanism for faces that they do for other objects, and are far less likely to look at someone’s eyes as a source of non-verbal cues to meaning.

So the Shiny House is where they go, and they may be just too busy in there to attend to the factors that drive social development. Motivation is the key to learning, and for children on the spectrum that argues for a steady effort not only to engage them, but to make the world, and the people around them, more rewarding than a spinning fan or the gleam on a polished floor.

Posted via email from HikiCulture – A Forum for Reclusive People (and Hikikomori) {hikiculture.com site blog}

The Qatar Foundation recently launched the first World Innovation Summit for Education (WISE) in the capital city of Doha on November 16-18, 2009.

Three years in the making, its overall objective is to take on the task improving/providing global access to education for citizens as a basic human right through promoting/scaling/replicating concrete initiatives that are sustainable, innovative, and inclusive. 

Over 1000 educational professionals,practitioners, and media from 90 countries participated in this invitation-only Summit, that was competently assisted by a small army of over 200 logistical/support personnel and many volunteers from the Qatar Youth Foundation. 

The Summit attempted to find common ground among the many competing and often contradicting issues between what constitutes best and available practices in both the emerging and developed world’s educational systems. It will now become an annual event, whose agenda and true global impact will grow as concrete partnerships, collaborations, and opportunities to create systemic educational change are brought to the Qatar Foundation and the Royal family’s attention.

There was a decided focus on higher education (voices speaking out about poverty, gender bias, and disability were heard too) as being the key pathway to economic opportunity, global citizenship, and peaceful resolutions to social problems that have plagued humanity since the dawn of civilization. 

It was a great honor and responsibility to be invited to share my experiences about what works, push the traditional boundaries/notions about the rightful/reasonable inclusion of learners with disabilities in education, and hear about how people with disabilities would be part of an international movement towards educational equality and equity.

The Summit concluded with an intentionally generalized, but bold statement of 10 core education priorities, an announcement of two initiatives and a renewed commitment to the three main areas of focus for WISE in the future. There is much to hope for and work towards that will be part of crafting the realization of these priorities, and plenty of room for learners of all ages across the world experiencing a lack of educational opportunities due to institutional ignorance (best case scenario) and/or bias because they have learning, sensory or neurological that pose barriers  in traditional academic settings.

Here is a first-effort Flipshare clip  (poor production values which I promise to improve upon!)  of Dr. Abdullah bin Ali Al-Thani’s call for action and promsied support of future WISE priorities.

With so many pressing issues, it was a relief to hear the moderator, Nima Abu-Wardeh single out learning disabilities as a global educational issue within the context of the right to social inclusion. With an estimated 15% of the world’s population affected by this family of conditions, people with these learning barriers make up one of the largest underprepared and unrecognized educational minorities.

Predictably, a number of attendees who are commentators in the educational blogosphere (present company included) have already posted their thoughts & questions- both what can be done within our circles of influence to clarify/push the agenda as well as wondering how this signature event would not end up becoming a one-and-done affair.

A glimpse of what should be more to come for students and adults with disabilities was announced at the end of the Summit. It is a collaborative project between the Shafallah Center and USC targeting people with Autism Spectrum Disorders.

For many of us, going to conferences that discusses any kind of educational reform usually means hearing a rehash of the same problems, generalized statements of  changing the status quo, and a feeling of resignation rather than resolve. It becomes several days of blah blah blah and then we go home. We do look forward to seeing other colleagues finding that workable solutions to “education reform” oftentimes reveal themselves in the hotel bar somewhere between the second and third cocktail!

As more of those who attended the Summit find, connect with each other, and share with their peers, I am convinced there will be ample opportunities to develop local and large-scale interventions as there was no lack of talent, best practices, and committed people. There is simply no acceptable way to return to status quo, now that we have been able to connect with other kindred spirits and have a sense of what is just beyond our reach to do.

There were many top world educational professionals I met in Doha who openly disclosed growing up and still dealing with dyslexia, ADHD, Asperger’s/social blindness and mood-related disorders. The fact they felt comfortable with themselves and where they are in life provided for me an additional layer of a sense of community.

Then, I remembered that we represented a small sliver of a successful minority. That current students from around the globe with these conditions were not invited. That we must expand the educational focus beyond college and students under the age of 25 because those who are older have been and remain completely excluded from any nation’s public agenda. That there remains a global unemployment rate of almost 90% of the world’s 850 million people estimated by the World Health Organization to have a disability. 

I expect we will continue to be busy for a while addressing issues that will take a generation to carry out. But- as I am not willing to give up on any generation of persons with barriers to learning success- remain a pragmatic idealist who to bringing public attention, political constituency, and quality services to youth/adults with hidden disabilities.

Welcome! 

This blog is a place and space to discuss, reflect, share personal stories, research, best practices and “oh no you didn’t”s for adults with hidden disabilities.  We are making the move from a newsletter format in ConstantContact because it did not allow for two-way conversation and active participation from our readership. WordPress opens up possibilities that we did not have before.

The term hidden disabilities in the context of this site will tend to focus on higher incidence conditions such as learning disabilities (US definition), ADHD, high functioning autism/Asperger’s syndrome, Executive functioning issues, mood disorders, and other related learning or neurological conditions. Collectively, when you use just about any data set or governmental source for special education, young men and women with these diagnosed conditions make up over 2/3’s of placements in public school settings.

It will stress adult issues because one can only find them participating in higher education settings comprising less than 10% of the student body (L. Brinckerhoff, ETS, 2009),  have an unemployment rate of 78% of working age adults (US Census Bureau/Dept of Labor statistics), until recently, were unable t0 prove they were being discriminated against in workplace setting because they did not met the conditions of disability ”under the law” (ADAA, 2009)  and only just this year were considered eligible for Small Business Loan consideration as a Minority-owned business (Harkin, 2009).

For as many living in the US that have Medicaid/medicare health insurance benefits through the Social Security Program, there are many more who have no health care insurance because they are not eligible due to “not being disabled enough” to qualify due to conflicting eligibility requirements. With pre-existing conditions (sorry born or developed it), many of us in this category of life experience pay mortgage level rates to have minimal insurance with high deductibles.

Yet, there is a strength, resilience, and good sense of “the far side”  humor in looking at life- you must have some of this because the world from our view of it can be so ridiculous sometimes that the best option is to laugh and engage in sarcasm/dry wit/humor (oh I hope you will contribute in this vein!) when you get tired of explaining, that no, you don’t overcome these conditions, you become skilled at managing it.

Our site will review local, national & global news,  invite articles, reader comments, post YouTube videos, and any other media that will increase attention and action about the lifelong issues these conditions pose, and present  proven concepts, programs, and services that are helping. Just click on the highlighted links in the body of the article or hit “play” for the Youtube. I see the site having a twitter feed shortly, and we can communicate in this manner as well.

 I hope to see this as a safe place to come to feel welcomed.  We are working on building community in common cause with current and emerging issues. My first question to readers: What matters most to adults with hidden disabilities (or disabled adults for my European friends)?

Please sign up, read, comment, share with friends, and let’s make this the last generation that does not enjoy full civil rights inclusions and protections.

Warm regards,

Rob  Crawford

Hiding away

Many days I feel my heart lurch in my chest. Really? This is what I signed up for?

Liam was my first biological child and there is no other feeling in the world than holding a helpless newborn in your arms. Taking him to the mall at Christmas that year nearly brought on anxiety attacks. I was sure someone would snatch him out of his stroller…he’s flimsy and floppy and wouldn’t be able to put up a fight…why is that man staring at us?

Sitting in my overstuffed armchair during the first month of his life I would sing “You Are My Sunshine” and weep when I got to the part of “Please don’t take my sunshine away.”

My first look at the fragility of new life and the dependance that this child would have on me for all his needs. I could do anything to him and he couldn’t fight back. My mother told me then that I had just opened my heart up to a world of love and a world of heartbreak. Shattered my heart into a million pieces.

Since then, he’s become an “A” student, great athlete, super support and one of my best friends. His sister, Erin, came along and managed to add a little girly to my life. I love her immensely.

That was over 13 years ago. I’m a seasoned MOM, right?

Now I watch Colin walking around the earth. All the feelings I had for Liam when he was born reared with each child, but poor Colin wasn’t number one or number two, so by the time he showed up I managed to sleep through the night pretty easily without anxiety. He slept next to my bed as an infant out of convenience rather than fear. I’m a master at nursing babies while I sleep. I actually left him alone in the other room while I cooked…never did that before. I assumed that with this child nothing could make me worry. Been there, done that…wrote the book.

Not so fast.

I listen to him more intently than ever. Each conversation we have is peppered with wierdness (for me, not him.) The desire to hear him tell me how is day was…what he liked…what bothered him…what made him laugh…I can’t tell you how I’d love to hear those things. Instead I get a play-by-play of certain aspects of his day and I’m made to guess which shaped table said things took place on. “Learning Stations” are his favorite thing but he’s really mad cause he has to miss some of that every day cause he’s pulled out to read to “some lady who wants me to tell her stuff.” Other than that, not much happens.

Or, he hides under tables with a grin on his face.

As he walks through his day and perseverates on certain things, I wonder if I’ll be able to channel that intelligence, that obsession into something wonderful and fun. I wish he’d “play” with me rather than order me to perform certain tasks that make his world right. The amazing Thomas the Tank Enginge set up in his room is less of a toy and more of a stim.

He’s flimsy and floppy and really in need of someone to guide him.

Throughout the day he runs to me for physical contact or validation. Bazillions of hugs and kisses. Today really sucked for him though. He woke up at 4:00 a.m. cause our back door was banging in the wind. Daddy’s away, so he managed to weasel his way into bed with me. At 6:00 I got up to get breakfast for Liam, so little shadow man followed me out to the kitchen. Then, he had a substitute for school. Not normal routine. Not great.

But right now, his big brother Liam is dressed in a bathing suit giving him a bath. It’s pretty cool. My worry for the next few years is that Colin might be bullied. He’ll be riduculed and teased. I’ll be fighting the teachers and schools every step of the way to make his academic learning a success. Therapies, teachers, counselors, doctors….

As Colin walks around I again feel that little lurch in my chest. It hurts. It’s not my heart breaking into a million pieces this time.

It’s my heart walking around outside of my body instead.

Many days I feel my heart lurch in my chest.  Really? This is what I signed up for?

Liam was my first biological child and there is no other feeling in the world than holding a helpless newborn in your arms. Taking him to the mall at Christmas that year nearly brought on anxiety attacks. I was sure someone would snatch him out of his stroller…he’s flimsy and floppy and wouldn’t be able to put up a fight…why is that man staring at us? 

Sitting in my overstuffed armchair during the first month of his life I would sing “You Are My Sunshine” and weep when I got to the part of “Please don’t take my sunshine away.”

My first look at the fragility of new life and the dependance that this child would have on me for all his needs. I could do anything to him and he couldn’t fight back.  My mother told me then that I had just opened my heart up to a world of  love and a world of heartbreak. Shattered my heart into a million pieces.

Now I watch Colin walking around the earth. All the feelings I had for Liam when he was born reared with each child, but poor Colin wasn’t number one or number two, so by the time he showed up I managed to sleep through the night pretty easily without anxiety.  He slept next to my bed as an infant out of convenience rather than fear.  I’m a master at nursing babies while I sleep.  I actually left him alone in the other room while I cooked…never did that before.  I assumed that with this child nothing could make me worry. Been there, done that…wrote the book.

Not so fast.

I listen to him more intently than ever.  Each conversation we have is peppered with wierdness (for me, not him.) The desire to hear him tell me how is day was…what he liked…what bothered him…what made him laugh…I can’t tell you how I’d love to hear those things. Instead I get a play-by-play of certain aspects of his day and I’m made to guess which shaped table said things took place on.  “Learning Stations” are his favorite thing but he’s really mad cause he has to miss some of that every day cause he’s pulled out to read to “some lady who wants me to tell her stuff.”  Other than that, not much happens.

As he walks through his day and perseverates on certain things, I wonder if I’ll be able to channel that intelligence, that obsession into something wonderful and fun. I wish he’d “play” with me rather than order me to perform certain tasks that make his world right.  The amazing Thomas the Tank Enginge set up in his room is less of a toy and more of a stim.

He’s flimsy and floppy and really in need of someone to guide him.

Throughout the day he runs to me for physical contact or validation. Bazillions of hugs and kisses. Today really sucked for him though. He woke up at 4:00 a.m. cause our back door was banging in the wind. Daddy’s away, so he managed to weasel his way into bed with me.  At 6:00 I got up to get breakfast for Liam, so little shaddow man followed me out to the kitchen. Then, he had a substitute for school. Not normal routine. Not great.

But right now, his big brother Liam is dressed in a bathing suit giving him a bath. It’s pretty cool.

My worry for the next few years is that he’ll be bullied.  He’ll be riduculed and teased. I’ll be fighting the teachers and schools every step of the way to make his academic learning a success. Therapies, teachers, counselors, doctors….

As Colin walks around I again feel that little lurch in my chest.  It hurts.  It’s not my heart breaking into a million pieces this time.

It’s my heart walking around outside of my body instead.

     I have a confession to make: I was ambivalent at best about becoming a mother. Husband and I never really planned to have children, nor did we plan not to have children. There was no conscious decision made in either direction. I was certainly excited when I found out I was pregnant, although more than anything else, I was absolutely terrified. Of what, exactly, I’m not sure.

     I was not one of those women who enjoyed being pregnant. I was surrounded by those women, and marveled at their eagerness in experiencing all things pregnancy. But they may as well have been from another planet for all I could relate to them. I’m just not cut of that cloth. Even more so, I wasn’t one of those women who wanted with all their being, knew from the moment they could think for themselves, that they wanted to be mothers. I almost felt guilty that I was going to become a mother while I watched dear friends, who so desperately wanted to become mothers, try everything possible to get pregnant but couldn’t.

     Yet for all my feelings of ambivalence, I became one of those mothers who simply cannot separate themselves from their child. I’ve struggled with it since day one. Not because I simply revel in all things parenting – I didn’t coo at every spit up or eagerly journal and videotape every single thing C has done. But when I look at C, and marvel at how he’s of me (and sometimes almost can’t comprehend how he could be), I am struck by how very un-separate from me he seems to be. Some would say it’s my heart living outside my body, but it only feels like that a little bit. When I really try to get my thoughts around it, I can’t exactly.

      It takes me back to the very beginning of my blog (see here), nearly two years ago now. While I do believe that God gives us what we need, I’m still on the watch for the greater meaning of why this child has me and I him. Perhaps it is as simple, and as complex, as C is what I need and I am what C needs, no further explanation necessary.

i’ve listened to and watched this at least 4 times now and it is still interesting – so much of my own thoughts and history is here… wow!!! if only i knew much earlier on…

just like that gershwin song: “how long has this been going on?”… i’ve missed out, and now i m super hungry to learn and discover… not just for me, myself, resolution for my past and hope for a future, but also so that i can help others like me… if i can give a leg up to just one child, it wld be worth the journey…

yes, i spotted that box way before the time limit… and one reverse observation here: the ‘follow the red dot’ exercise was used to show how difficult it is for high functioning autists to maintain concentration in a classroom setting, but i also find it was a useful exercise to show how high functioning autists do NOT bother to look at ppl’s reactions i.e. what the man was interested in, and rather just follow the visual object around… that is what i did – it was EASY to follow the ball becos i will not normally even look at the face of a person unless i force myself to do so… and i m not interested in what he/she is looking at, i m only interested in what i m looking at… and that is usually NOT the human face…

another interesting bit was the part abt how lack of concentration in ASD is different from typical ADHD – that flipped the light switch for me… i cld never understand why i shd pay attention to something disinteresting, and for that be labeled ADHD, and yet my super ability to concentrate on my own interests run totally contrary to ADHD anyway!!!

ok i m lucky – i was one of the active autie kiddies… but not so lucky cos i was never diagnosed, just condemned as ‘difficult, odd, eccentric’ etc… even now… but i m my own person now, i dont need affirmation anymore… my affirmation comes from within – knowing that my creator made me different for a person not known to many but it’s enough to know who i am and to love it despite the downsides!

We have been loaned a Body Sock for Annie and Heidi to try out. It provides fabulous proprioceptive input and is especially hand as a calming device at this crazy time of year.

So what is a body sock? Well our speech therapist said it looks like a giant tissue box cover, which is a very apt description. Here is a picture of Annie in the body sock.

From Dec 09

It is made from lycra and the opening has velcro which you can use to seal it up.

A short video of Annie having fun in the body sock

It’s not just Mr. Nico that has ex baggage.

It seems I have plenty of my own.

Last night I had a horrific confrontation with my ex-husband. Or soon-to-be ex-husband, I should say. The marriage has been doner-than-done for a long time, but the legal technicalities haven’t been completely finalized.

And, apparently, the ex wants to stand in the way of that happening.

I had this utopian vision of our divorce. I thought we could interact rationally and treat one another with care and respect. I thought we could leave the anger and bitterness to the past and work together to be the best parents we could be for our two children.

He, however, didn’t share my vision.

Our conversation last night started with him unleashing his hatred on me. Hatred is not an exaggeration. He used words like hate, loathe, and despise to describe how he felt about me. He threw every wrong, every slight, every inadvertent sin I’d committed in our marriage in my face. With viciousness.

“Why is it that you flat-out refused to have sex with me the entire time we were married?” he angrily growled.

Me: Blink. Blink. What?

Sex was always at issue for us, as I’ve mentioned before. I spent the entire marriage feeling sexually rejected . . . and he spent the entire marriage feeling sexually rejected. Now I can see it was because our love styles and communication styles never meshed. His Asperger’s complicated that, a lot. He doesn’t know how to read social cues, and thus missed out on every “I’d really love for you to screw me now” message that I ever sent. And he doesn’t know how to communicate at all, so his attempts to initiate sex were reminiscent of an awkward 12-year-old boy who doesn’t know how to tell a girl he likes her.

But, in his version of the events, it was ALL me, completely my fault.

As was everything else. As he ranted, I was struck by how odd it was that he was dwelling on every finite detail, bitterly angry about each one. I’d long ago left all the ways he’d hurt me and betrayed me to the past, long ago let the anger go. I couldn’t fathom how he could possibly still be clinging to it.

He reamed me for wasting the best years of his life, and then he said the oddest thing:

“But then I think about those two incredible little boys, and they deserve to have their mother and father be together.”

Me: Blink. Blink. Huh?

In summary–he hates me, loathes me . . . but doesn’t want to divorce me because he thinks a divorce would be bad for our kids.

I’m still sitting here blinking in shocked astoundment.

I believe that there are a number of family compositions that can be nurturing for children. I DON’T believe that having married parents necessarily leads to happy, healthy children. You know, especially when one of those parents despises the other. That really can’t be a healthy environment for kids.

I guess it’s just another indication of why we shouldn’t be together–we see the world SO very differently.

And so he’s decided to stand in the way of the divorce. And so I need to drag in lawyers and get my fight on . . . a dirtiness that never figured into my utopian vision.

I’m a broke graduate student, and the idea of mounting a legal battle feels so unbelievably daunting. I dread the thought of having to borrow money from my parents to pay legal fees. The irony is that Mr. Nico is the best person to help me with the legal messiness, being a lawyer and all. It’s not his specialty, but he recently handled a divorce for a friend of ours. And yet I feel so uncomfortable about asking him to help me . . . there’s something that feels not right about asking my new boyfriend to help me get my divorced finalized.

So tonight I’m feeling a bit like I’m floundering, not sure how to get myself out of this fucked-up situation with my ex. I know that I’m a strong, tough woman who will fight her way out of this mess soon . . . but my fighting spirit seems elusive right now, in this overwhelming moment.

With my life, there is never a dull moment.  However, sometimes these moments turn out to be completely, absolutely, over the top, panic-stricken-ones!!! Apart from my hair being on fire right now, I also can’t tell if my heart is about to explode, or it’s already stopped altogether.

I was busy just a little while ago and my mobile rang (I was actually on my landline at the time.)  I picked up my mobile and looked at the display.  Who ‘dat? They left a VM.  After I finished my other call, I listened to the message.

Can you guys wait a sec’? I need to go have a smoke and take a Valium before I continue writing this! Thanks in advance for your patience.

Huh.  It’s starting to rain outside.  I stood in it.  RAIN NOT PUTTING OUT MY BURNING HAIR!!!

I listened to the message, and then it sort of (sort of?) hit me as soon as I heard the voice on the other end.  It was a woman from a Recruiting Agency, who said she had my resume and a job she wanted to speak to me about.  AHHHH!!! (Note: I am not screaming in a good way.)

If you are new here, I have been unemployed since being laid off from the spring of 2008.  It has been devastating as you can probably imagine.  Thus, you can also probably imagine a call about a prospective job would be a good thing.  It is NOT! Well, not right now?

The problem is, or at least one problem is, I am not “medically cleared” for work.  In fact, I am not even medically cleared to look for work.  I’ve been too sick physically, and out of my mind as well, that…ugh.  I have an appt. with Merlin #2 (my shrink if you are also new), on the 9th.  His goddamn hair might bloody well ignite if I walk in and tell him how much “progress” I have made lately, in that, I’ve found a job!

I have said lately that I agree with him that I’m not exactly “work ready” right now, too.  As much as I desperately need a job, I’m hesitant that with all that has gone on (and on and on…), that I might have a total meltdown if I get too stressed out.  Or one, big, mother of a brain, frying seizure? Granted, I’m still sticking with stress as the reason for those becoming so out of control since said joblessness.  Although, a new job is kind of stressful? *rolls eyes*

Then, there’s the upcoming VEEG.  A lot of places keep you on a probationary period where they can fire your (MY!) sorry ass for any reason they please.  Well, tell the VEEG folks to push me down the list because of that?

I have no record of dealing with this Agency, as well.  I checked their website, and like a lot of them–sneaky bastards! Nothing that remotely resembles the “job” that this woman mentioned, no mention at all of her on the site, yet another woman’s name regarding other available positions.  Yep, reel in other unemployed folks like me! Gotta get the business! Gotta get your clients!

Crap!

I guess I have to call her tomorrow.  Fuck, me! Prior to things really going off the rails when I was actively applying for jobs, I was getting nowhere.  I have several non-negotiables, so the whole thing could go up in flames immediately with that phone call, anyway.  That is, if I can squeeze enough information out of her.  There is nothing more ridiculous than wasting your time, getting all fancied up to meet with a Recruiter, just to find out it was all for nought!

Still, the whole Recruitment Agency Model requires that they really do need their unemployed clients.  Without them, they can’t earn the money from the paying businesses that need their positions filled in the first place!

This is insane.  Welcome to “The Land of PA.”