A La Aspie

Earlier tonight, Ethan missed his orchestra recital. He was SO excited about this recital. He missed it, in the end, because of the band teacher’s failure to follow his 504 plan. I’ve had this post on tap for a few days but I think watching my Aspie kid cry his eyes out the whole way home and then be ok an hour later drove the point a little deeper.

I posted not too long ago about the great success we’ve had in the past few months. That success has continued unbroken for almost two solid months now. Almost long enough to breathe a sigh of relief… but I’m still flinching. I went for a massage this weekend and after the massage, I was talking to a friend about some of the emotional stuff that surfaced and I said “I’m still on the lookout.. I’m still on alert. It could still happen at any time.” But tonight, although I flinched all night, the success remains unbroken.

Tonight, he got dressed for his recital in black pants and a white shirt. A white shirt that looked like he’s worn it about seven times without washing it and which had a hole front and center. I asked him to change the shirt. And then I flinched, ducked and got ready for Meltdown of the Month. It didn’t happen. We had a minor exchange before he was convinced to put on an identical shirt (he has 4 of them - moms of aspies will relate to that!) that was sans-hole. Two months ago, the clean shirt would have meant dragging him to the recital in tears.

He put his shoes on and tied them, quickly, chattering happily about something or other. I winced the whole time. He’s known HOW to tie his shoes since preschool… every day, up until two months ago, we STILL faced the shoe tying debacle that happens invariably every morning before school. He’d try to leave them tied and just shove his feet in ( which messes the shoes up). I’d insist that he untie and tie them. But he didn’t want to tie them because they are too hard to tie… why are they too hard to tie? It’s just tying a shoe… you’ve done it since you were four or five. But it’s shoe tying.. complex hand eye coordination.. too difficult… Lots of anxiety built up around it.. commence meltdown. Religiously.

We drove to the recital, stress building as we went. Irrelevant conversation building to a fevered pitch. I worked him down, worked him down. We made it there without tears. He wanted to wait at the car until I was at the gate and then walk in. We negotiated and he came along.

We got there and found that the note home had contained an inaccurate time and we’d missed the recital. I held my breath and stiffened my back. He didn’t turn and stomp away or sit in the back and scrunch his face up into a death glare like he might have two months ago. He went to his place and held his composure until it was time to leave and then he got into the car and crumbled into tears.

I reassured him over and over and worked him down and comforted and assured him I’d take care of it. A couple of months ago, that would not have worked. He went into the living room to watch tv while I wrote the tediously documented email to the school and copied it to god and everybody. A couple of months ago, he’d be curled up in a ball beating on his bedroom wall - or worse, his head.

Up until two years ago, I was doing all but the school advocacy for Emma, Ryan’s daughter, too, who is also on the spectrum, and at the time, probably not as high functioning. My WHOLE LIFE has sometimes been wrapped up in this. Up until two months ago, every moment of whole weeks. The emotional and mental drain made it very difficult to focus on much else. Every moment was a struggle, emotionally. Practically, every week was filled with details, to do lists, meetings and phone calls. Getting a sitter was out of the question, going places was a trial at best, his father was uninvolved, even combative about it and even close friends kept an arms length understanding about it - leaving me very, very, very alone. It’s left me expecting it, constantly… that dull ache in the background of that grinding drive, driving forward, always pushing, raw and relentless.

And now it’s been two months. He has done amazing. He had a rough day yesterday in school… he’s been really anxious about Ryan popping up for a couple of days, a justifiable reason to be anxious, and it spilled over into school. We talked about it, doubled up on locking the doors and keeping the alarms set, kept Cody in the house, he took an extra Omega 6 and Omega 3 and despite my flinch upon waking, he bounced back and had a stellar day.

And tonight, right now, after all of this, even with all of my flinching, he’s peacefully taking his shower. As frustrated as I am at the school right now, I’m not picking up the pieces of a completely inconsolable, emotionally incoherent child. He cried, he wiped his eyes and he moved on. Like a normal kid. Part of me was all built up to ‘deal with him’ and I didn’t have to. I just had to do the normal mom stuff with maybe a tad bit extra. That’s it.

Tonight, I cried with the frustration of it… seeing my kid in tears over someone else’s inability to follow through is hard. Beating my head up against the brick wall of the school is hard. But I wasn’t dragged through the almost unendurable hours of meltdown until bed time and then the knowledge of invariably picking up again in the morning. I flinched, I cried and then I blinked and relaxed. It’s ok. Reprieve. Room to breathe. Relief.

Ethan, while having an AS dx, also exhibits possible, by undx, attention deficit problems. Not undx for lack of looking, mind you (he’s been through two psych evals in his short life), but not the paramount issue. I’ve tried a few things that positively affected the AS symptoms but had very little effect on the attention deficit symptoms.

(And just for the record - I did sit in on his class one day during a ’shadow the student’ day - and OMG, tedious and monotonous. I really don’t fault young kids for not being able to sit still through that. It was HORRIBLE! In fact, I question the sanity of a young child who CAN sit still through that and have a brain left that is anything but numb. Maybe I could start a movement to treat overly attentive children.)

While in a client session one day, the client told me that she had read a study about kids with ADD who were treated with Omega 6 and Omega 3 who showed improvement of symptoms. I read the study and it sounded promising enough… so I tried it. Over his thanksgiving break, he and I both started taking 3000 mg of Omega 6 and Omega 3 every day.

I didn’t really notice anything at first. After about the first week though, he started really mellowing out. We could have full on conversations without him kicking into hyperactive mode. He was actually listening when he was told to do something and he was getting his chores done without arguing or without struggling. For myself, I noticed that it had the same effect of taking something for anti-anxiety. I just didn’t get rocked as hard by stressors. I also noticed that I was also able to more smoothly move from task to task and focus for longer periods of time on tedious or monotonous tasks.

Then it was back to school time. Ethan gets a report home every day in which the teacher rates him on a 4 point scale for behavior. Prior to Thanksgiving holiday, he might get an E (excellent) in behavior every now and then… but regularly got S and G.. satisfactory and good and sometimes an N (FAIL!). Bearing in mind that his teacher was being gracious too… she would rate him with a G and then say ‘He tore the classroom down with the timbre of his shreaking’. AND there were the almost weekly incidents - he argued with a teacher on the playground, he was involved in a scuffle, he was doing something ‘weird’ like pretending he was blind on the way back to the classroom… just random impulsive stuff.

After the Omega 3 and Omega 6 supplementation started, suddenly, he was getting E’s (excellent) in behavior - EVERY DAY. He was remembering his planner (where he writes his homework) almost every day - instead of the inverse. He was more interested in special projects. AND… there were no more incident reports coming home.

EXCEPT… there was this time… (in band camp?) I was busy cleaning the house one morning when I found a fish oil capsule on the ground. AND… then another. And another. In a corner. “Wait a second”, thought I, “That is a couple of days worth of supplements. Why are they under the bookcase and shoved into the corner of the bathroom? Hm.” and I put my finger to my chin in thought. And then, it was as if a lightbulb went on over my head. “That sneaky rapscallion figured out that if mom isn’t watching, he doesnt have to take them and he hid the freakin’ things.” And that was that day that he got a bad report home from school. He held the bathroom door shut on a couple of girls. About a week later, I allowed him to skip his supplements because of a sore throat or something and that day he ALSO got a negative report home.

It’s like night and day. It’s like two different kids in one body. One is calm and friendly and funny and confident and honest and the other is Evil Genius Moody Pants. The difference appears to be Omega 6 and Omega 3.

So take it for what you will. In later research, I did find two references to a study in which the only children with Attention Deficit Disorder who experienced a positive effect from the omega 3 and omega 6 supplementation were the ones who also had comorbid neurological imbalances - which Asperger’s Syndrome qualifies as so it might be that this story is more applicable to kids with Asperger’s Syndrome with attention problems than to ADD specifically.

There is also the issue of dosage. It seems, from what I can tell, that you have to have a good balance between the two. Lots of foods have Omega 3 in them - not many foods have Omega 6 in them.. so dosage would depend upon the kid’s diet, in part. I know that taking 1000 mg of Omega 6 did nothing for me. Taking 3000 of both had a considerable effect. 3000 of both is 6 big horse pills. The kid friendly peach flavored ones? You’d have to take a million. So that’s the other down side, I guess.

Being face blind means not being able to differentiate between or remember faces. I am not entirely face blind but if I had to guess at a percentage, probably 80-90%. That means that I am able to recognize people sometimes, given certain situations. People who are completely face blind don’t recognize faces at all.

There are lots of great sites about face blindness so I won’t seek to educate you on the actual condition. However, here are some tidbits from my world of face blindness.

It occurred to me, out of the blue, yesterday that if I had to pick my roommate, who I have known for about a month and have lives with for two weeks, out of a line of guys, the only thing I could remember about him was his hair. There is truly no record of what his face looks like and it just caught me off guard to see that thought so clearly because it’s usually so natural for me to just go on what I do remember.

My ex boyfriend shaved all of his hair, except his eyebrows, off of his head and face one day. Until it grew back, I had a really hard time convincing myself it was the same person. It felt really odd being affectionate with a ’stranger’. :) I remember my mom telling me about a time when I was 3 or 4 when my dad shaved his facial hair off and I was scared to death of him and didn’t know who he was.

My neighbor from across the street is really nice. We’ve talked a lot of times in their driveway. She came over once and I opened the door and talked to her for a full two minutes before the “Uncomfortable Moment of Re-Introduction” because she realized I had no idea who she was. She clearly knew me and was on good terms with me… I just didn’t know who she was.

My ex wanted me to meet him at one of his favorite bars about a month after we started dating. I was scared to because I was afraid I wouldn’t be able to pick him out. Like conscious fear, afraid. I tried to find someone I met in the bay area on facebook and although I was almost sure… I couldn’t tell from the picture if it was him because his hair was different.

I’ve never looked at a wanted poster done by an artist and been able to tell how that drawing looks any different from the people around me. I’d never be able to identify a child off of a milk carton.

When I’m meeting someone who I have only ever known online, I don’t recognize them in person - because they just - look different. They aren’t surrounded by a frame. :) I have run into a few famous people in person and I never recognize them face to face. I often don’t recognize them from one magazine to the next if they have changed their hair or style of dress.

I recognize how people smell and feel emotionally more readily than what they look like. When i look at someone, I see their hair, scars, tattoos, DISTINCTIVE facial characteristics, their body shape, their style of dress, who they associate with, their style of movement, their ‘essence’… the type of person they are and all of that equates to an individual. I have NO idea what their face looks like though so if any of those variables change, I could be back to square one.

I will likely recognize someone in a public place if I have known them for maybe 6 months in several different settings, I have had an emotional connection with them or they have distinctive features that cannot be changed.

Could I just say that I am on the tippy, tippy edge of this thing we call preadolescence and I’m already wishing for a swift blow to the head?

He had sex ed a couple of weeks ago. And apparently the sex ed was very detailed because he got to see a picture of a vagina (insert mysterious oos and ahs here) and he got all of the details about a period and how exactly babies are born. And now? Sex is ALL he thinks about. EVERYTHING now is a sexual innuendo… and I’m his mom. I can’t imagine what it’s like with a bunch of 9 year old boys.

And? The meltdowns are so much worse. He is on the autistic spectrum so we’ve always had meltdowns… but these? These are like nuclear disasters. Re faced screaming and tears over how MEAN mom is and weepy, the sky is falling, I will never survive, everything is all your fault.

10 minutes ago :
him : *weepy weepy weepy* You’re such a bad mom… You don’t even cook me dinner!
me : I’m making left overs from last night. If you’d like to make yourself something though, you can.
*after 2 time outs to calm down - dinner was on the table by this time *

* face becomes red, eyes become wide, steam rolls out of ears, he levitates 8 feet into the air, there is a bloodcurdling screech as the heavens rip open*

him : I don’t want to eat this. I’m not even hungry! GOD, YOU’RE SO MEAN!!!! !!!!!! !! ! !

I remember when Ryan’s cousins went through this phase and I remember the eye rolling and huffing… and that’s really my only point of reference… but I don’t remember this part. This is like my sweet innocent (hahaha) child is having growing pains because the demon inside is getting cramped and no longer has room for the entertainment center.

I… am now quite certain there must be a divine hand in our evolution because God help me, there are moments when I just absolutely don’t know how our species has survived with offspring this obviously incompatible with civilized human life. God bless mothers.

This is our president in 30 years, folks. Kill me now.

ponderethereal.com has been alive and kicking since 2001. Not too long ago, I added advertising to the site which has generated a small amount towards supporting the site. Otherwise, the site has been supported out of pocket.

Ponderethereal A La Aspie has provided information and support for countless numbers of parents of kids with Asperger’s Syndrome and adults like me with Asperger’s Syndrome and Karmic Konsumer enjoys regular reports of people finding valuable information about products and service providers on a daily basis.

To be candid, in September, I was assaulted by my husband and sustained injuries that made me unable to work. That on top of the divorce (of COURSE I divorced him!) has left me in dire financial straights. I am no longer able to financially support the site on my own.

If you have the means and have appreciated the site, please consider donating towards it’s upkeep. I would be eternally grateful. :)




There are those times when the review goes really, really well. Historically, with this school, it has ONLY gone really, really well. This year was different though.

Usually, the school sets up a 504 plan review meeting at least annually as part of the 504 plan process because it’s their responsibility. I had to request this meeting. Ethan and I went to dinner last night and discussed the items at length and came up with some good action points. I wrote up a structured report and request list.

When everyone showed up, out of 6 people, NO ONE was prepared for a 504 plan review except Ethan and I. There was confusion, no one brought anything, there was no sense of cohesion. Then we start ticking off the items and running down the list. Sitting across from me, Ethan’s teacher says “He’s been completing his classwork just fine.” BUT WE JUST HAD A MEETING A COUPLE OF MONTHS AGO WITH YOU, ME, THE SPED COORDINATOR AND ETHAN BECAUSE YOU SAID HE WASN’T COMPLETING HIS SCHOOL WORK. I SAW his workbooks with massive amounts of blank pages JUST NOT DONE. He spent hours at home making it up. Am I in some sort of alternate reality?

That wasn’t the only item like that either. This meeting was truly an act of having documentation out my ears of each and every item to convince the people who witnessed it along side me to fess up. Whether or not he acted up in class, he acted up at recess, he completed school work, the school followed up to make sure I signed something… everything, every last thing… it was like it never happened. And on it went.

California schools are being cut way back. I can understand there is some pressure on them to not expect quite so much from teachers because teachers will probably have additional responsibilities as staff is cut. But give me a break!

I had the proof, thank the gods. Never show up to an IEP or 504 plan unprepared, that’s for sure. Walk into every one knowing that they will dispute every last thing you say and ask for because that’s their job. They HAVE to try to not spend any more money on the child than they have to. YOU have to know what your child needs and YOU have to know the intricate history of what’s in his past down to the daily details and YOU have to know how this disability specifically applies to your child. If you don’t need all of the scraps of paper, dates and times that you’ve collected, then good on them. If you do, though, don’t be caught without it.

Cody has been doing wonderfully as a service dog. I take him with me almost everywhere I go now and it’s absolutely SO MUCH EASIER to go out with him. It makes getting out less of a source of anxiety.

A month ago, I would avoid going to the bank. Today, I’m going with nary a second thought. yesterday, we needed hamburger buns in the middle of the day, a time that I stay clear of stores, and I took Cody and got through it great!

I still can’t take him anywhere with shiny floors because it freaks him out but for short trips to a place with shiny floors, he can sit in the car. I saw a great dog whisperer episode that gave some REALLY great tips and I realize how I reinforced the shiny floor behavior now. I’m going to try to arrange an after hours training session with the pet store to get him to walk on shiny floors.

However, that isn’t the point of posting. The point is, our first service dog task is trained! Cody has learned to be attentive during periods of sadness and tearfulness. He senses it, knows it is abnormal and coaxes me into hugs and kisses. He sits patiently and attentively while I sob all over him and it helps! It’s better than a person because I don’t feel judgment or like I’m being watched. AND he’s with me all the time, whereas, I might not have a person around.

I feel like we’ve had a success!

Today, I took Cody on our first outing in public. We started with Walmart. I was a little nervous approaching the front door but Walmart staff were very respectful and I wasn’t challenged. Then Tim took off in the other direction, I got nervous and Cody got nervous. We rested for a moment and then plodded onward.

Cody was very well behaved. He focused on navigating around things, he ignored people, for the most part and ignored the stuff on the shelves and wasn’t the least bit frightened of shopping carts. And then the puddle of water happened. I didn’t see it, Cody stepped in it and his feet went out from under him and he panicked. He laid there for a long while, me comforting him before he braved it again and then he tried to do it on his toes. Have you ever seen a dog walk on it’s toes? It’s quite humorous and not at all conducive to navigating a tile floor. I’ll spare the details but we made it ALMOST back to the front door and then wound up putting him in a cart and wheeling him out, which he enjoyed.

Even while he was panicked, he was very quiet and polite to people. He laid there, panted and looked about calmly and interested in what was going on. Two old ladies met us on the way out and petted him and stroked him. I held my breath a little but there was nothing to fear. He licked one and they both cooed. When we got to the car, I walked him around the parking lot to help him regain his composure and then we were off to get lunch.

I learned, as his handler, to keep my cool and support him and to stand confidently by his side. Even though he wasn’t feeling confident, just being there with him made me more confident. I also learned to evaluate the successes and forgive the rest. He makes mistakes too and he did great for his very first time out! I also found that with him to focus on, even with such an anxiety cuing event, I didn’t panic AT ALL! I was CONFIDENT!

We went to Submarina next. I walked him around the parking lot and then approached the door. Instantly, he got nervous. I put on my confident energy and marched right in the door, ushering him behind. I let him lay down at the door while someone else placed the order and then we got up and walked outside and walked around some more. Then we did one more quick jaunt into the door and back out and he did it without being frightened at all. Success!

We ate outside and worked on down and stay while people are eating. Not so great at the stay part. I suspect because, in part, he was still keyed up over his experiences earlier in the day.

We made one more stop to CVS, which is carpeted, for his confidence and feeling of success. A little hesitation at the door, but then he followed us right in and took treats the whole way. When he stopped taking treats, that was my cue that he was getting nervous and so we walked outside and he got lots of praise.

We practiced sitting politely outside while people passed and he got it down pat. Then he came home and passed out in his crate. What a big day for him! No more working today for him. Just lots of love and rest. Tomorrow though, we’re right back at it. I’m actually tentatively looking forward to getting out!

I have Asperger’s Syndrome, which makes really simple stuff not quite so simple. When I was in my last relationship, we naturally ebbed and flowed so well together that my weaknesses were his strengths and although there were things that were annoyances to him, he always did like a girl who he could fancy weaker than himself. And so it worked.

In September, I went through a traumatic event that while did injure me physically, did more injury to me emotionally and mentally than anything else and compounded any difficulties I might have been having before that time. I was, at that point, dealing with severe depression and anxiety ALONG with Asperger’s Syndrome ALONG with PTSD. AND my main practical day to day support for the last six years, my husband, was gone.

I’ve done a lot of things to help myself recover as quickly as possible from the trauma of September and one of the things I did was get a dog. No… not a silver bullet, by any means but it was my first step towards feeling safer. What I discovered is that the dog also provided other more subtle things that I sometimes relied on my ex for. Like keeping me moving through my day and knowing exactly when I need affection (although the dog gives it to me, which is a step up, in my book).

Slowly, over the months, the dog and I have become inseparable around the house and when I leave the house, I feel like I’m leaving a part of me behind. When the man cub is in school and I’m here by myself, it feels normal and natural to take Cody with me to the grocery store or to the bank. I want to have him there to usher me to the door when I have a panic attack or get too over stimulated. I wish he could come with me to insulate me from the crowd. When I come home, I want him there to walk with me between the car and the house so that I feel safe. I feel unable to do a whole lot of stuff without that help. Normal every day stuff that I used to be able to do with a husband around… or that I just never was able to do with confidence. Using an animal for that is called having a service animal.

Service dogs aren’t just seeing eye dogs or hearing dogs. Service dogs can help people who are physically handicapped or emotionally or mentally disabled and service dogs are being used with autism more and more frequently. Although the few tasks I named seem fairly simple, when considering having an assistance dog for Asperger’s Syndrome, the idea actually fit an entire gamut of behaviors that would be a huge help to both myself and my son and would make daily life that much easier and more livable.

However, when I started looking into having Cody trained as a service dog, much to my chagrin, I found that service dogs are far from regulated. There is no system of trainers or programs to train a dog to be a service dog and most services that train service dogs, use puppies from their own breeders, not a dog that is already a companion animal. The trainers that will train a companion animal charge thousands of dollars for their services and while I don’t begrudge them their living, that’s just not something I can afford.

However, contrary to popular belief, there is no requirement that a dog must have training by a particular type of facility and it is perfectly legal for an owner to train their own service dog. And while there are several trustworthy organizations that serve as registries and testing agencies for service dogs, there is also no central licensing or certification requirement for service dogs.

Some states, counties and cities have requirements but their requirements are trumped by the Department of Justice Americans with Disabilities Act (ADA) which holds out no requirements other than the service dog must be individually trained in a verifiable action that supports the functioning of the disabled person. Here is their FAQ.

So, not only is it possible to train one’s own service dog, it is accessible and legal to do so. True to form, I’m going to do it myself, for little or no money and I’m going to blog about the whole process. This process includes how to choose tasks that the dog can help you with, how to create a vest and identification, how to get accessible testing and licensing, in what order to train tasks and how to responsibly handle a service dog.

I’m no expert yet… but I started this process about a year ago when researching how to use Tobi for therapy work so I’m a little ahead of the posts or I wouldn’t have the confidence to start this series. After all, it’s a tall order, training a service dog.

Step 1 : Deciding if a Service Dog is a Good Fit - And How
Step 2 : Choosing or Using an Appropriate Dog

Most long time readers will know that my 9 year old some has some issues with impulse control and behavior in school and socially. This is, in large part, due to his Asperger’s Syndrome and in small (but not inconsequentially) part due to a very highly intelligent mind and strong will.

He is consistently disciplined and rewarded at home and I’m very involved in his world but it’s just not sinking in. And where his disability is concerned, only seen and experienced consequences help. Where zero tolerance and potentially legally dangerous acts are concerned, waiting for legal consequences is not an option I want to explore. So I decided to take him to the San Diego Juvenile Hall Open House.

It was absolutely fabulous. There were booths set up outside, first of all, so while you’re waiting in line to go on the tour, you’re passing educational booths about the facilities and county programs for crime avoidance. Ethan got to see what inmates wear and eat, handcuffs, pictures of inmates doing hard work and get a real taste of life in Juvie before we even went inside.

When we got inside, the kids, Ethan included, were lined up in the front of the tour, shortest to tallest. They were told right away that everyone under 18 was being detained for the next 20 minutes against their will. Right away, officers started yelling at them to straighten the lines up and tuck their shirts in and fold their arms the right way and it was like all 20 kids just totally zipped it up. The looks on their faces were priceless.

We went through each area of the facility and in each area, they were given a very gritty rundown of things like schedules, chores, responsibilities, discipline etc. They were warned about ill behavior at home and school and how it could land them there by people other than their parents. Every step of the way, they were very sternly treated and reminded about their behavior.

We saw bare exercise yards, sparse rooms with cots, bathrooms with no privacy, school classrooms, shared clothing, gross food and a really, truly, disciplinary environment. There was nothing that the kids could grab onto to say ‘it wouldnt be that bad’. By the end of the tour, they were satisfactorily sobered.

I took someone who had been in that juvenile facility as a kid and he was very clear that had he seen this as a kid, it would have been a deterrent. I know *I* surely would have been scared. It’s one thing to hear your parents harp on it, it’s another to see it first hand and hear cops tell you about it without your parents talking to them first.

When we left the tour, we went to booths about gangs, weapons and drugs and they had in depth displays that the kids could look at and actually see drugs and drug paraphernalia and gang related stuff so that they know what they are looking at when they see it.

I highly recommend this for any even borderline kid.