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Teacher Appreciation

It's teacher appreciation week and boy do I appreciate teachers. When we talk about IEPs and educating people with special needs and/or disabilities we often think of services like speech therapy, social groups, and behavioral support. But the real truth, the simple truth, is that teachers are the front line. They are the people who spend the most time with your child. Whether they are special education, resource, or general education teachers, they are there day in and day out.

I look at both my children and know with certainty that they have learned, developed, and grown under the tutelage and guidance of their teachers. I suppose it's why public education has so much innate controversy. We all want what's best for our children and we challenge the administrators and politicians to improve the system. But at the end of the day, it's the teacher with dedication, patience, empathy, and knowledge that makes the difference.

When I think about Ethan's primary education these last 11 years (preK-8th), I know that his teachers have had a significant impact on his success in public school. Without their commitment and support to his full inclusion, he would not be where he is today. It takes a village and teachers are village leaders.

It is also May 4th today, so to all the teachers out there: Thank you and May the fourth be with you.

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Thinking about the future - High School

Something that I'm guessing a lot of special needs parents do differently from parents of typical kids is not thinking about the future. We don't look at our argumentative 4 year old and think he could be a lawyer. Or when we see our 6 year old girl putting band-aids all over a doll, we don't say, "Aha, a doctor in the making." We don't daydream of where they might go to college, or what sports they'll play varsity in high school, nor do we even think about what our child might be doing in school next year. One day at a time. That is how we live.

Now, we do have our IEPs that plan services and the structure of the school year, but frankly, we all live by the knowledge that we may have to call an IEP meeting at anytime to change and adjust things.

Even as high-functioning as Ethan is, I never never never ever truly think about the think about the future. When people ask, I usually say that he has a good shot to be at least partially independent, but to what extent, who knows. I know the statistics. They aren't encouraging.

We think this way for both our child's benefit and our own. We don't dream too much, so we don't get disappointed. It also allows us to enjoy each of life's little successes and milestones in the moment and cherish our children as they are.

Oddly enough this year, I find myself forced to think about the future and it's really difficult. Ethan is going to high school next year and that means choosing classes, considering his academic path, and truly thinking about a 4-year block of time. It's a complete paradigm shift for my brain.

Academically he's fully included in general education and I'll be honest and say that I've always mentally prepared myself that the bottom might fall out. With each passing year, I wonder when the academics will be too challenging and he'll have to have modified curriculum or go into special ed setting. It happens for the vast majority of kids on the spectrum. Only with Ethan, it hasn't. He's done very well and has been only lacking in a few particularly Autism deficit spots here and there. He's got a 4.0 GPA for middle school. His teachers believe that he will do well in high school and should be college bound.

I want to drink the kool-aid, but I also want to cushion the blow if he doesn't hold up to everyone's lofty expectations. It's been frightening to think about this huge change for him as well as the fact that there will be much less support for him in high school. They have so few high functioning/fully included autism kids, they don't have anything in place to support them. The administrators thought that maybe 2-3 others at the school (not grade, school). Most are in Special Ed.

Our transition IEP next month should be interesting to say the least.

So we helped Ethan choose his courses, and he turned in the form that requested the college track courses that included Biology, Honors English, and Spanish (for foreign language). As my husband and I looked over the paperwork outlining the next four years filled with upper level and perhaps even AP classes, I couldn't help thinking, "Is this really happening?"

Thinking 4 years ahead is so foreign to me. It's scary. I'm optimistic. Ethan's a great kid. He's smart and hardworking, but he has a lot more roadblocks to overcome than most kids. Whatever the outcome, I know that he's a wonderful young man and we'll help him reach his highest potential.

8thgradeEthan

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Ahhh,'Social Reciprocity', perhaps one of the vaguest and open ended terms in the Autism Spectrum diagnosis. In simplest terms, it's the back and forth of emotional and/or social exchange. However, it's really referring to the neurologically complex and varied realm of individual social function. My interpretation of this term has truly evolved as Ethan has grown and developed. I see the crux of the issue as social interest, and by that I mean interest in other people-- their lives, thoughts, emotions, interests, expereriences.

When you're first chasing that ASD Dx, perhaps when your child is 2-3 years old, you'll be asked questions regarding social reciprocity. Does your child share things with you? They'll give examples such as showing you a drawing that they drew, pointing at an airplane overhead, or looking at you with pride when they've done something neat. Ethan did none of these things.

As I observed him over those early years, I quickly noticed that he was far more interested in things than in people. He had no interest in playing with another child on a playground, but if there was a child with light up Power Ranger sneakers, he would be in that kid's space to see them. As he got older and became more verbal, the same concept applied. He wasn't interested in talking to other kids, but if a kid was playing a Nintendo DS or was wearing an Iron Man T-shirt, he would ask them about that.

Ethan has recieved lots and lots of social skills training and social group facilitation over the years. He knows how to interact and the questions you're supposed to ask. He can take turns in a board game and can certainly play video games with friends. What he doesn't have is social interest. We've worked with him as well as teachers and therapists on things like asking about a friend's weekened, did they go to any movies, travel anywhere, etc. We've talked about getting to know people, where they live, brothers and sisters, hobbies, sports, interests, etc.

But when it comes right down to it, he's just not interested. The part of the brain that is stimulted and gives neurotypical people that 'happy feeling' when becoming emotionally connected with another person is just not getting the juice. More than anything else, this to me is the core of autism- that 'self' world. Intellectually he knows about social reciprocity, he simply has no social interest because it doesn't do anything for him.

How to evolve past this? That's the 100 million dollar question. Most theories are based on the notion of creating those neurological pathways that aren't present. Just keep facilitating (almost force) the experiences and perhaps over time they will develop, much like a stroke patient who needs to learn to walk and talk again. Other scientists are exploring the drug option, such as oxytocin based on the noted lack of oxytocin in ASD children and adults. Neurologists continue to investigate the regions of the brain that seem to be the most differentiated in people on the specturm.

So what does that mean for Ethan right now? Right now, I worry about him a lot. He seems to get along with kids at school, but he's not making any meaningful relationships. I encourage him all the time, but I get the impression that he's not putting forth the effort because he's not interested. I worry about him being so self contained and alone, especially when he goes to high school next year. Ethan has his brother and a few friends that he's had since early elementary. They aren't in his middle school and probably won't be in his high school.

The good news is that he doesn't seem to mind at all. It doesn't cause him anxiety or feelings of doubt or depression. I stress more than he does. Perhaps with time he will find one or two people that he has commonality with and can enjoy hanging out. In the meantime, we'll just keep trying to give him those experiences.

Sheldon Cooper Moment

So last night whilst watching the postgame celebration for the Giants (woo hoo *\o/*) Ethan had a really funny Sheldon Cooper Moment.

Even if you aren't and avid Big Bang Theory watcher (which I am), you probably know of the show and Sheldon Cooper. While some might debate if he'd actually qualify for an Autism diagnosis (perhaps Social Disorder in the new DSMV), he indeed exhibits many of the difficulty interacting and socializing with other people qualities that are consistent with those on the Autism Spectrum. I see a lot of my high functioning son in him. Not just the social issues but also the boyhood innocence and facination with toys, scifi, and superheros. Ethan may be a teenager but he's still very much a boy at heart. Just to put this sweet moment in perspective, Ethan's too young for the show but has caught a few minutes of it here and there. Ethan is extremely literal and has a hard time with understanding gentle teasing, kidding, sarcasm, etc.

So last night... yeah, Ethan's Sheldon moment sort of seals the deal on the portrayal for me.

My younger son was checking out a brand new Wii U remote and managed to send it flying from his hand, into the air, and to the floor.

To which I said soemthing like, "Let's break it the first day, shall we?"

Ethan looked at me and said in earnest, "That's sarcasm, right?"

I smiled and said, "Yep. Sarcasm."

2 points for Ethan.

Maybe in a few years he'll be able to appreciate the gang on Big Bang and Sheldon.

Flowers for Algernon

So Ethan has had a good start to 8th grade and I'm optimistic about his teachers this year. As usual, I'm concerned about his development and progress and how it matches up with the curriculum. I've noticed a pretty big jump in higher order thinking skills for 8th, and it's not just common core being phased in. I think 6th & 7th are pretty similar and there is a distinct step up in the 8th grade.

One very interesting happening is that in English class he's been reading Flowers for Algernon by Daniel Keyes. I'm pretty sure that I read it first in the 8th grade as well (later I read it in highschool and saw the movie Charly at some point). I typically read most of his in class reading with him a second time at home and pause along the way to add information and discuss to help him with his reading comprehension. If you are familiar with the story, this topic hit very close to home, and much like Charlie in the story, Ethan doesn't quite grasp his connection.

If you're not familiar, Charlie is mentally retarded and agrees (in fact is almost desperate to participate) to have an operation that will increase his IQ by three fold. A mouse named Algernon has undergone the same operation. There is a known significant risk that it will not be permanent. It is a very emotional story told through the eyes of Charlie that shows his progression of ignorance to enlightenment and the emotional difficulties of social interaction both at low IQ and extreme genius IQ. I see much of Ethan in this story and it was an emotional experience for me to read and discuss the story with him.

The 8th grade questions are very thought provoking in that they ask the reader to have ethical and moral opinions of the operation itself as well as various members of society's treatment and reactions to Charlie. It asked the question of whether or not Charlie should have had the operation. In the story Charlie issues a 'no regrets statement,' but it is implied that people feel that he never should have done it. Ethan had a difficult time with this dilemma. We talked about the concept of ignorance is bliss. I don't believe Ethan realizes just how much social behavior he is ignorant about. In many ways I'm glad because it serves as emotional protection, just as it did for Charlie.

The textbook also asked about medically altering IQ or personality in the future. Ethan had difficulites taking a position. I talked that it's opinion and there's no right or wrong, he should just back up his choice with reasons and examples.

Towards the end of our discussions, I felt the need to bring up the changes in Ethan after he went on Prozac. They have been positive and it seemed to make him consider the benefits of altering a one's personality. I also found myself discussing with Ethan the results of his IQ testing and pointing out that it tests over a range of different thinking processes. While Ethan has high average IQ in most areas, some are low average and he has difficulties with certain social aspects because of his autism and his brain working differently. I find myself wondering just how much he absorbed.
One of the buzz three letter acronyms (TLAs) you'll hear in autism therapy is CBT, aka Cognitive Behavioral Therapy. This is an approach that's often employed for higher functioning adolescents and adults on the spectrum (as well as neurotypical folks in therapy). It's something that Ethan started encountering sometime between 3rd and 4th grade and now makes up the majority of our therapeutic approach with him. It is what it sounds like - using cognitive processing to deal with behaviors and adapt. When Ethan was emotionally overwhelmed (very little regulation age 9-11) we didn't see much progress, but the instant he went on prozac (about 2 years ago) we all started seeing him using the techniques and skills that he had been learning through CBT. It was pretty amazing.

This year we started watching a really neat show on the NatGeo Channel: Brain Games (here's a link: http://braingames.nationalgeographic.com/)

I rec this show to everyone adults and kids and especially kids on the spectrum. The show examines brain function in a fun and entertaining way. It's educational and in some instances you can see how it would even be considered CBT. Awareness of behavior and its cause is a big part of the therapy. There've been many times when a particular area of the brain and its function is discussed that I instantly connect with some research article that I've read demonstrating irregular activity and function in an autistic brain (for instance abnormal amygdala development and function). Often I can see the physiological explanation for why Ethan behaves and reacts differently during some of the "games". Last week's episode on Anger was particularly revealing. Ethan laughed when people on the show started getting angry when most people's reactions would be to start feeling angry themselves. Ethan rarely displays anger... frustration, hurt, sad, overwhelmed - yes... raw anger - no. Lo and behold our friend the amygdala plays an important role in how we process anger.

We also see areas where Ethan's performance is just like the majority of people (they'll often quote stats like 70% or 80% of people will_____etc.) It's fascinating and I think provides a real learning experience for him (and all of us). Neat stuff!!!

And OMG, in one week Ethan starts 8th grade - I'll write a back to school report.

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Lucky 13

Some say 13 is an unlucky number. Nonsense! It's been pretty luck for Ethan. It's been a really great year.

Now I realize that this is difficult age for many young teens, but the onset of puberty, middle school, and the teen years can be especially challenging for kids on the spectrum. Even Ethan's psychiatrist gave me a wide eyed look when Ethan described that he was perfectly happy and things were good at school and no problems to speak of with other kids or teachers. I nodded at her to confirm that he was indeed doing quite well. I've heard the horror stories and I'm sure she has too. She smiled a genuine smile of pleasure and relief on my behalf.

Schoolwork was challenging and there were those same critical thinking and perspective taking areas that gave him trouble, but despite a few clunker grades, overall he maintained his 4.0 for the year. It's impressive and he works so hard. Over the summer, my plan is to work with him on those areas that will probably always be difficult for him. Lots of reading comprehension, writing, and math word problems. I also need to preview whatever common core materials I can get my hands on.

Being Jewish, this year was also Ethan's Bar Mitzvah. It's a religious coming of age and well... a big deal. He studied Hebrew and Torah reading the last 6 months and performed beautifully. It was truly a special day to see him be like every other Jewish boy his age (if not even a bit more impressive). More than anything it reminded me that there are no limitations on Ethan.

So many times, a child is diagnosed at 2 1/2 much like Ethan. A big report of autistic criteria and observations, and also listings of postitive skills and development, plus recommendations of education and therapy. Absent from those throrough multipage documents is prognosis. No one gives prognosis for kids on the spectrum because it's as varied as the spectrum itself and almost impossible to predict. I've talked about this in the blog before that as parents of special needs kids we parent from a slightly different perspective. We don't think or predict the future. We live in the now, day to day, week to week. We see progress and we cheer without dreaming about things like college, occupation, marriage, and grandchildren. To see Ethan hit this huge milestone in such an unlimited fashion was pretty incredible and I could tell that our extended family felt the same.

To celebrate, we had a party with the San Jose Giants (local minor league team). We were so proud and Ethan was proud of himself. Yep, 13 is a pretty lucky number.

Here he is having a little fun with Gigante at his party:
IMG_1596 copy

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Awareness

Well, it's getting the end of Autism Awareness month which is also Ethan's birthday month. He turned 13 the other day and I am happy to report that no fangs or horns have appeared. He did however get braces. (Of note, his teeth are a mess- large and every which direction. He even participated in a clinical data gathering study with the hypothesis that kids on the spectrum have worse oral development) Ok, a little off track, but let's move on to awareness.

Most of the people reading this blog are pretty well aware. People with immediate family on the spectrum are aware every bloody day. People with friends and more distant family are pretty aware as well. So what do I want out of autism awareness day/month? If just a few new people every day became a little more aware.

* The Disney cast member who called a mother a "Fucking Bitch" because she kept asking for a quiet place for her child to wait or the Disney cast member who tells a family with an autistic child that they can't have a disability pass because their "child needs to learn to live in the real world."

* The trolls on the message boards and comments sections of internet news articles and blogs that want all autistic people to be ignored because why should anyone need special accommodations anywhere. They should just stay at home and never go out to restaurants, parks, sporting events, or anywhere in public ever.

* The police that target autistic teens in drug selling entrapment to make quotas.

* The kids, teens, and adults that bully autistic children and families. This includes bus drivers, school teachers, and school aides.

* The school district employees that refuse to provide services under IDEA law.

* The restaurant manager who asks a family with an autistic child to leave a restaurant.

* The parents at the park who tell their children to stay away from 'that kid.'

Of course this list could go on and on, because there are a lot of people out there who need 'awareness'. They also need education, compassion, tolerance, and a sense of right and wrong. Make no mistake, these people are also developmentally delayed. They are developmentally delayed in humanity. Sadly, these people will probably go through life with an intense sense of entitlement and unaware of how their behavior negatively affects the people around them. They are on the lowest rung of social development.

So all the good people in the world, be aware of just how so many people are unaware. Be one of those 'feel good' stories on the internet about a total stranger standing up for a family or child with special needs. Because that is truly how awareness will spread. So I quote the often quoted and misquoted "All that is necessary for evil to triumph is for good men to do nothing."
(Sergei Bondarchuk’s Soviet film adaptation of Leo Tolstoy’s book “War and Peace”)

Wow, it's March.

Tempus fugit. I'm happy to report that things have been going well. Over the past couple of years, we've had all sorts of warnings that adolescence brings difficulties along with change, especially for children on the spectrum. I keep waiting for the other shoe to drop, but I'm enjoying the peace in the meantime. Ethan is more than midway through the 7th grade and doing quite well. His academic challenges are the same as they have always been in that he works hard and excels in math, science, spelling - pretty much anything that has a distinct correct answer, while he struggles with writing and understanding concepts that involve point of view and looking for context clues. As always, inferencing is not native to Ethan's thought process. So I work with him on these, and he muddles along.

We had has IEP recently and it went as expected. There isn't much of a change moving from 7th to 8th grade in the same school. His goals are mostly focussing on the same social, communication, and educational deficits that he's always had. He makes progress, albeit at a slow rate, but he makes progress. We talked about the implementation of 'Common Core' and that his deficits may be come more apparent and frustrating in the new curriculum. I'm hoping that Autsim Speaks or other Autism Education organizations come up with some strategies and suggestions for kids on the spectrum that are now being thrown into this new type of curriculum that focuses on higher order thinking, explaining, and working in groups. It will be interesting to see how educators approach this with kids on the spectrum in General Ed. settings. Everyone seems to be flying by the seat of their pants right now in terms of how they'll implement and what to expect, especially how to handle student difficulties. The district hasn't even finalized textbook and/or curriculum selection. Naturally, I'm concerned about the lack of planning and resources (even at a State and National level) of how Common Core will affect special education and special education students in the general ed classroom. I will be searching for reports, papers, and other resources over the next few months.

Ethan still gets frustrated when things are confusing or difficult, but he's come a long way in managing his emotions with self calming techniques. He's also still rather 'detached' from his peers. He engages with them in a superficial way and usually only when prompted. He likes being around his peers, but doesn't initiate conversation or interaction. His most significant and interactive relationship is (and has always been) with his younger brother. Next year they'll be in the same school again (for 1 year) and I wonder what positive effects that might have. His brother is a great facilitator, but sadly often overwhelming for Ethan.

Next month is Autism Awareness Month and April 2nd is World Autism Awareness day. I shall endeavor to come up with a more structured and helpful post :)

Progress thy name is subtle

Happy New Year 2014! Ah yes, that time of year we look back and reflect over the past and postulate about the future. We resolve. Sort of.

As I think about Ethan's development and progress this year, I realize how different the progress of my Autistic middle schooler is so different from his younger years.

When a child is diagnosed at 2-3 years of age, they embark on a journey of therapy - speech, behavioral, occupational, etc. In those first years the progress is mostly concrete and measurable. One day he doesn't know his colors then 2 weeks later he knows 12 colors. One day he can speak 7 words, and a month later he's got 19 in his vocabulary. One day he can brush his teeth all by himself. You get the idea here. As they age and progress the development becomes harder to measure.

Yes, IEPs are about measurable data, and include such things as reducing behavioral outbursts to 1x/week and using self calming techniques in 4/5 opportunities. But really, for a high functioning kid, what are we measuring when it comes to his social skills progress? We talk about observable opportunities, but the truth is it's quite difficult to measure if he's interacting productively and age appopriately. For the most part he doesn't. He's detached and at his core is less interested in people than things. He participates in many social skill building activities and simulations, but does he really absorb and utilize those skills? Does he even get any enjoyment out of socializing? Ahhhh, it is one of the roots and defining characteristics of autism.

So, I rely on anecdotes to decipher if the current regimen of memantine (plus prozac) is helping his development. From time to time, Ethan's teachers send me emails decribing Ethan interacting in a very positive way with other students in class, even at times taking on a leadership role. The psychologist who runs the weekly social group will sometimes tell me about solid conversations that he's having with peers. The principal made sure to let me know how much fun Ethan seemed to have at the dance - dancing, eating, watching the other kids (*although much of his time was spent by himself). Even if he's not overtly social and interactive, he seems to enjoy school and being around others.

The memantine clinical study is coming to and end and we'd like to have Ethan continue on memantine with our regular practioner. There's some study survey data that suggests progress, but mostly there's my impression that he's grown this past year in ways he hasn't in the past. I think there are some emerging skills that are hard to quantify and harder to separate from the fact that he is aging and maturing over time. There've been no negative reactions or side effects, so at this point I want to pursue continuing on the memantine. The last study 2 years back we did see some regression when he came off of the drug, but at that time he wasn't stabilized on and SSRI so his emotional regulation (lack there of) was truly overshadowing everything.

So what does 2014 hold? Don't know, I hate predictions, but I do have optimism. Hopefully we can get our insurance carrier to approve the memantine (which is off label for autism) and we can continue to see Ethan develop these far more esoteric areas. I'm also hoping that as this large population of autistic children reach their teens there'll be new ways to teach and track their progress in social skill areas.

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