Saturday, August 30, 2008

Adjusting to Back to school with Autism and ADHD



Yo! Mick here.

The first week or so back to school is typically filled with adjustments for any child or family. For a student on the autism spectrum and their family there are even more adjustments and these can create some intense reactions or require some fairly extreme planning.

Adjustments may include:
  • Back to school rituals for the student
  • Family routines are shifted - again
  • Getting up earlier than in the summer and going to bed earlier
  • New schools (may be same or different school districts or different schools as in transitioning to middle school or high school)
  • New teacher or teachers
  • Meeting new friends
  • Reacquainted with the bullies
  • Switching to school or fall clothes from play or summer clothes
  • Wearing shoes (with socks) and learning to tie them
  • Homework
  • Less time for preferred activities
  • Less time with favorite pets or people (my biggest pet peeve! grin - thump, thump!)
  • Returning to or adjusting medication doses
  • Classroom rules may be different
  • Higher expectations for the student and the student may have higher expectations of others or themselves (even unrealistic expectations?)
  • Expectations which are too low
  • Paperwork demands
  • Learning new skills in and out of classroom
  • Sports or other activities such as band
This list seems to go on and on. Going back to school is quite an adjustment for me too - I seem to have a compulsion to slurp from the garbage can. I just can't help myself. I am that pathetically bored. Sometimes I'll wait for Red on the couch but hey, I can only do that for so long.

Tuesday, August 26, 2008

High School Micromanaged for Autism and Success

Yo Mick here, the one sitting on my tail.

Red and I began high school yesterday - at least the pretend version of me gets to go. Band camp has been awesome in transitioning Red to high school. He's met some new friends who are mentoring him. I keep a low profile when he's at school. So low that most people never know I exist but Red is able to talk to me when he needs to work something out or reassurance.

Behind the scenes, Mum and Red's SCIA (special circumstance instructional aide - formerly called a 1:1 aide) have been busy getting things set for him to have a good year. They've arranged his classes, researched his teachers even, and got his locker in a location that won't add to his stress level.

The locker needed to be on the outside so he doesn't feel suffocated and its at his chest level, not too high or too low. With over 2,000 students these little things help.

Some call this micromanagement, but when it helps Red succeed who cares what its called or who thinks what? Mum knows best most of the time and she's good at listening to the council of others. Our goal this year is to ensure that red has a smooth transition to the high school.

Most of the details Mum and the SCIA are able to iron out but there are some things beyond their ability to either control or know about. Fore example, one of Red's classes has a bully in it that made his life miserable in one of his classes last year. The bully picked up right where he left off so now Red has a schedule change - already - the second.

There's no way to know if that'll help in the long run but they have to try. Kids with autism are often bullied and don't always understand that they are being bullied. Red knew. I wish I were permitted to go to classes with Red, I don't thing the bully would be such a problem.

Mum and the SCIA stay on top of things, it's not always easy, some people who typically don't understand autism don't recognize how important it is to do so. Can you imagine how it feels to start every day accidentally smashed into lockers by others - when you have sensory issues?

Or what if every time a teacher called out loudly you perceived it as them yelling at you as if they were angry with you for something and you had no idea what it was?

What if you knew the bully was eyeballing you and you told the teacher about it, and the para-educator and still no one believed you because you have autism and everybody knows that kids with autism don't perceive things like that correctly?

Micromanagement, advocating, whatever you want to call it helps kids with autism. More often than not it is a kid's mum doing this but it may be another trusted adult, even a teacher or para-educator who fills the role.

Hopefully someone does because these kids need help, because sadly, there are still a lot of people (mostly neurotypicals) who just can't seem to understand that not everyone perceives the world the same way. And they say kids with autism lack empathy! HA!

Saturday, August 23, 2008

Marching Back to School in Tune with Autism

photo taken by Sarah Andrade - family friend

Band camp concluded yesterday and the band had their first paid performance tonight. Wow - they have hit the ground running. Practices 2 nights a week, performing for every home football game, several marching competitions and school. Band is a definite investment of time and effort but bonding with friends is well worth it.

School starts on Monday. I'm not ready but Red is. I'm as ready as I can be - it just never feels like I can be totally prepared. In past years I have put together a letter of introduction for Red's teachers. OASIS once had a letter that could be tailored to the student but now has a few checklists and lots of other information that can help families and educators with students on the autism spectrum.

My experience is that teachers quite reading the letter in junior high, just when I was wanting a way to expedite getting the information to all of Red's teachers. One year I even sent in a short Power Point. It wasn't until the end of the year that a couple of his teachers even looked at it. Which is probably why the letter has been reduced to a checklist.

Looking back over the years of letters is one way to acknowledge Red's increasing abilities. Sure, it seems like every new level of accomplishment brings with it fresh challenges but I can track progress on his own chart. That's not to say that there aren't those times where he goes forward a few steps only to step back a couple now and again. Red has his own dance steps that's for sure.

What band camp has given Red is an ability to march in tune and step forward with an entire band. He's not off on the sideline or stepping to a tune no one can hear but him. He belongs. Red, in turn, plays his heart out for the band and his buddies.




Wednesday, August 20, 2008

Marching with the Band to the Beat of Autism

Hey, Mum here.

Red plays the baritone in the high school marching band. I am so thankful that he's found a group of people to hang out with this fall doing something that brings him great pleasure - Music.

Band camp has really been instrumental (grin!) in transitioning Red to the high school.

He's leaving a junior high school with close to 800 students and going to a HS school with over 2000! I was overwhelmed picking up his schedule and books, I can't imagine how Red's going to feel on Monday when classes begin.

Kids with autism typically don't transition or accept changes very well. Many though will also stress and feel overly anxious with too much advanced warning about changes or transitions so parents can find themselves in a position of weighing when to tell and how much to tell.

I was in that position regarding Red's inoculations. At the time, I didn't tell him in advance because I knew just he'd react with a lot of anxiety and be totally stressed out. And I was right.

Band has helped ease the typical transition to high school a lot! I am so amazed. Red has had no problem getting up early and spending a long day (8-5:30!) learning new music and marches and meeting fellow band members.

Red's ready for his classes to begin. I'm not so ready. Red will need to learn the layout of his new campus, find "safe" areas to hang out, contend with kids who are comparatively huge, learn how to open and use a locker, and he's not going to be crazy about all of his classes.

The past several years Red has been mainstreamed into regular education classes for most of his day. Last year he had a lower level math class and a resource language arts class. He hates math regardless and felt the resource language arts class was below him.

Sure, for spelling it was. The kid out-spells me! As long as Red is permitted to copy the spelling words from a book and not "guess" during a pretest. Pretests cause him to memorize the word incorrectly so I've added to his IEP, "no pre-spelling tests". Yes, I do resort to micromanaging when necessary.

Red just doesn't test well for reading comprehension. He may understand more that we know but even if we're all off a bit, he needs help in reading.

Also I chose to get proactive even before classes started. I pull Red from his assigned math class because I heard from 4 different sources that that the teacher is a "yeller" (and why is this person a teacher?). That would just upset Red and would be no way to begin his day.

The other teacher who taught the level of Math Red needs only has one section and its during band. So, he's now in a remedial level math, an SDC math class. It is my hope that the teacher can create a math program that helps him learn his math facts and also helps prepare him for the exit exam.

Sigh. There are many executive decisions and things to consider when raising a special kid with autism. Parents truly need to be active advocates and very diligent in their children's education and assessing their needs. A balance between smothering or codling with helping them grow and mature is not easy to achieve.

So, ready or not, classes begin on Monday. I'm not telling Red about the math class decisions I've made. I'm saying nothing about the resource language arts class. Nope. Mum's the word because when it comes to Red, Mum knows best. (I hope! Please don't backfire!).

Thank goodness for the things I can predict and positive influences in my son's life like Music, Band, and Band Camp!





Sunday, August 17, 2008

Band Camp Blues

Hey, Mick here. You know, Red's tail waggin', wet-nosed four legged brother?

Red began band camp this week (this is Red from last year). I'm trying to be happy for him (but he looks about how I feel). I mean, he's off meeting new High School buddies, getting to march and play his baritone and band is way cool but I'm mostly stuck at home by myself.


Mum's real happy about the band camp too. Band kids are generally good kids and it is important for Red to have some solid friendships because there are a lot of people who go to Red's school and some of them are pretty tough.

Band kids tend to stick together, eating and hanging out during lunch and breaks. The friends that Red is making this week and next before school starts up will really be helpful, so don't mind my sulkiness. I just feel like a lost puppy when my boy's gone.

Red does this incredible thing though. He takes me along in his imagination. I play the french horn and get to march and so much more. I'm playing first chair and I'm squad leader. My friend Louie also plays.

Red had a really awesome week! He met up with some of his band friends from Junior High and his mentor from HS has introduced him to more new friends. Every day he'd come home full of these great stories about his new experiences.

I believe this is going to be a really powerful year for Red, he's off to a great beginning.

I also know where I stand. Rather than going to the pizza and pool party on Friday, Red chose to come home so we could have some down time - just the two of us. We both needed to unwind and just be.

Thursday, August 14, 2008

The Love Look


Yo, Mick here. The one with the wet nose. Naw, The black, wet nose!

There are a lot of generalities made about kids with autism that are just untrue!

Kids with autism do make eye contact, they do have and express feelings and they know how to give and receive love. These generalizations made about kids with autism really are a disservice to kids, parents and pretty much everyone.

It is true that maybe they don't make eye contact with everyone or maybe there are kids with autism that don't make eye contact at all.

The same holds true for the other autism traits. There are a lot of "rules" broken. Generality type rules are a way of understanding and categorizing which is not necessarily a bad thing. When people begin to restrict others based on generalities though it is wrong.

My boy has not always made eye contact nor has he always been able to express his feelings, but he has improved these skills. This does not mean that he has or can outgrow autism, it just means that his abilities change.

We don't expect a toddler to remain dependent on a diaper or a kid to stay at the 4th grade math level the rest of their lives. All people grow and change. We need to permit change and growth for all people.

And seriously, who the-flip-flop says that growth and change are completed on a certain time-line? Time-lines are guides or more generalities. Use them sparingly.

Red may not tell me he loves me 20 times a day but look - that expression says love and no words could add more depth.

Wednesday, August 13, 2008

"Getting" the Autism Factor with Baseball and Cousins

Yo! Mick here. The cute one with the tail.

Red and I learned the basics of baseball this past week! Wow and Bow-wow! What a wonderful experience! Does life get any better than a game with boys chasing a ball, running around and having fun?
We spent the past weekend at a family reunion in Santa Barbara having a blast with our cousins. These guys had all played baseball before either in school or in a league but Red and I were fairly new. Well, Red may have played a bit in PE. Because kids with autism can get real stressed out with team sports Mum hasn't signed Red up to play league competitions. I can understand why - team sports are loud and confusing. Fun too, to be sure but with everyone yelling in the heat of the moment I was overwhelmed.


Red's lucky to have some cousins who not only know how to play but can offer up some help too. Red got some lessons on how to hold the bat for optimum swinging. His older cousin has a real knack for understanding Reds needs and explaining things so that he gets it.

His older cousin "gets" Red. We've started sorting people by those who "get" (understand Red and the autism factors) and those who don't. Those who don't are further divided into those who could with a bit more effort from those who choose not to get him.

Red's fortunate, his family gets him most of the time and always tries to. Some kids with autism are not nearly as blessed. Having a supportive family and friends is a huge factor in how autism impacts a person.

Watching Red swing his bat and keep trying until he connected was inspiring. More inspiring than that was the boys making up rules that applied to everyone's abilities and their patience with each another. These were not at all formal rules but more like using patience and tolerance. The pitching was pretty rough for everyone.

Red soon made contact with the ball. I chased after it while he ran around the invisible bases. Talk about confusing! Was I supposed to get the ball or chase my boy?

In the brief time I hesitated, the older cousin had the ball and was chasing down Red. I was barking, the younger cousins were shouting out and Red just kept running - up until the point when he was tagged out. Then he just collapsed on the ground. Red likes a big dramatic finish!

Life with autism is what you choose to make of it - having people who care about you and truly "get" you with the autism factors is a blessing. Red is well blessed. He has family, friends, teachers and me who "get" him.

What we all get is a boy who is fun, playful, loving and a joy to hang with.

Tuesday, August 5, 2008

Focus and Rules for Autism


Sometimes it takes the presence another to point out the things we are too close to see. When Kasmira came out she added to the mix a glimpse of the differences I don't usually see in Red. For example, we were on the beach playing and having fun. We stopped for some photos and it wasn't until we downloaded them that I noticed Red views the world differently.

It's not all that obvious, really but there it is, the autism perspective. Where is the focus point of this photo? Was it just that Red was in a hurry? Or is there a point of the focus? Or is it the autism factor? Look at this next photo of Mum and Kimberly.

Sure, they have cute knees and I love Kimberly's toe polish but what was red focused on? It is said that people with autism don't usually look into the eyes of people. Well, Red does sometimes - more often when he's with family and friends. Autism is also a mass of contradictions! Rules!

Ha - people with autism create rules, adhere strongly to rules, require others adhere even stronger to the rules as they outline them and all rules for the understanding of autism will eventually be broken. There's generalities or norms that can be associated with autism but don't try to hold a person with autism to what you think or know about autism. It is different for everyone with autism, every day and even every moment with autism is unique.

Expect change, be flexible and autism will be less traumatic and even fun. Autism is fluid in spite of rigid associations. Smile!