I am NOT doing too much - you do too little!

I’ve been told by several well intentioned souls such things as, “let it go”, “you can’t keep fighting all the time”, "You do too much”, “you’re too driven”, “you have to take care of yourself”, and my favorite, “relax, it’ll work itself out”.

Just what do people mean by this?

I sure as heck don’t see these self-appointed guardians of my best interest rolling up their sleeves and pitching in.

Nope.

What I think these people mean is that my activity level makes them feel less in some way.

I am a single mom of a son with autism.

If I stop advocating (the positive term for waging war against politicians and others for the things my son needs to survive), educating myself and others about autism, doing the thousands of things necessary daily just to keep the home going, oh and working outside the home to bring in the bacon, who will?

If I stop, we don’t just sit there where we rested, no, we get shoved backwards and buried deeper.

So PLEASE, don’t tell me to relax!

I hope I do make people uncomfortable with my activity level.

I’d like to see them squirm a bit.

Then I’d wish they’d pick up a vacuum cleaner and help me out, or write a letter to a politician, or cast a vote in support of autism programs, or call the school, or mow my lawn, or give me a gift card for gasoline, or a massage,

or just give me a hug.

or make ANY type of donation or contribution.

If any of you feel the need to SAY something, tell me I’m doing a great job.

If you can’t do ANY of these things – then keep your inadequacies away from me and mine, I do not have time for YOUR problems too!

I can’t possibly be doing too much because there is so much more I wish I could do.

Advocate or Adversary? What’s your reputation as a parent?

Advocate or Adversary? What’s your reputation as a parent?

I recently took a stroll on the adversary path. I locked my teeth into a fight that perhaps I should have just let go of much sooner. It was physically and emotionally draining and the outcome has yet to be determined although in the 11th hour I did concede.

A close friend cautioned me several times to not stay in battle because this particular person I was battling with is very important to Red, his band director, music mentor and guardian of a safe haven for Red, the music room. Additionally, the potential gain just didn’t make the battle worth the risk.

But darn-it-all! He of all people SHOULD have understood how Autism impacts Red. Instead he acted as a policy police and felt Red should be given a reality lesson, a consequence, for missing a performance due to a family reunion.

Part of the issue for me was being blindsided by someone I felt “got autism” and Red in particular.

Red would have rather gone to the performance. His consequence was not being at the performance.

Reunions are a lot of “work” for someone on the autism spectrum!

As many parents, I am sometimes so very tired of “educating” on this subject. I also get really riled when I feel I have to “re-teach” the same people over and over again.

My close friend cautioned me on the type of reputation I could develop with other school staff if I persisted in my perceived quest of advocacy. Dang those close personal friends who speak well.

If you don’t have one, be on the lookout for one, they are of huge benefit when the raging mama-bear or papa-bear in you takes over.

Advocating for our children is very important – I am not saying to stop. Rather, I caution you to seek your own advocate and close friend to monitor your choices and emotional engagement level.

Like many parents of a child with autism, I probably have some “shadow traits” or perhaps some learned “fight or flight” stuff going on within that caused me to over-react and dig in. Whatever.

As reputations go, I’d much rather be considered an advocate than adversary.

There are times to dig in and even be prepared to call in “the big guns” when needed. There are also times to heed a friend’s advice and let go in peace. You may even need to have more than one friend. Sometimes even our closet allies may be as blinded as we are by injustices perceived or real.

Your reputation is important to those future battles (and with autism, don’t we have enough to choose from?) and so is your energy. Choose wisely and be a peaceful advocate whenever possible.

Proximity and Professional Courtesy - For You and Yours

Proximity and professional courtesy is all well and good for Red and me but how can that apply to your situation?

I can’t answer that for you but perhaps if you stretch your imagination and ponder the question a way will be shown to you. Is it possible to volunteer in your child’s classroom or at the school?

I can completely relate if it’s not.

When you’re the parent of a child with special needs you are already a 24/7 volunteer.

When it was suggested to me that I could learn more at Red’s school and meet other parents by volunteering in Red’s classroom I jumped at the opportunity. Red had just started first grade (for the 1st time) and I was in a position financially where I did not need to work.

Red had major meltdowns when I tried volunteering.

When he saw me at the school when I wasn’t “supposed” to be there he’d scream and yell and even throw himself on the ground or hit me.

Eventually it was suggested that perhaps I shouldn’t be there.

Keep trying.

As you have likely discovered, our kids are on their own maturity trajectory but it is possible for them to mature beyond a “trying” point in time.

Going to school early to help out on the playground, office, classroom or library are other ways you may be able to make your presence “available” for positive interactions with the school staff.

If your work or other family obligations don’t allow for time to volunteer during school hours are there other things you can do at different times or even venues?

YMCA, sports, drama, or other after school activities may provide you opportunities to connect with teachers or staff as well as network with other parents. Chaperoning a school dance or other singular events may work into your schedule better.

Can you help out another teacher using your special skills or talents?

Just because your skills are not a match for your child’s teacher, they may help another and word gets around! Even working at other school sites will help.

Whether you are able to volunteer or not, maintaining a team player and positive attitude go a long way to benefiting your child and establishing your credibility as advocate.

As long as you ask yourself what you can do to keep yourself in proximity and be seen as a professional team member for your child, you will find ways to improve this area.

Do what you can to establish yourself as a pro-child advocate, not just for your child but all children.

Be active in your community; go to school board meetings, join parent support groups. You will learn a lot about the issues teachers and the community face regarding children.

What we want for our children must responsibly be factored into what is best for all students.

This does not mean that we continually permit our child's needs be forsaken but that we learn to pick our battles and whenever possible find creative solutions that do not take away from the needs of other students.

Be fair.

Your reputation as a fair and creative team member will serve well when you do decide to “pick a battle”.

One of the gifts or developed skills parents of exceptional children have is being resourceful. Use it well.

Continue to find ways to be in proximity of your child’s teachers and maintain a reputation as professional child advocate. Your ability to do this will serve your child (and school and community) in ways you may never fully know or appreciate.

Professional Coutesy and Proximity

I was in college, working at the middle school and readily available to make swift changes.

Red paved the way in our district for some new policies. They are affectionately called the “Red model”. I don’t believe the staff would have considered them were I not in their “net” and a part of the national policy-setting trend of higher education. Red opened the doors for students to not have to be in 6th grade to be placed into a 6th grade math class, which has been applied to other courses for other students. Red was in 6th grade math for 3 years.

The first year he was under the desk in the back of the room.

The second year he was sitting in the back of the classroom at his desk working on a different workbook and occasionally raising his hand to make a comment or answer not always (but sometimes!) on topic.

His third year Red was working in the 6th grade math book and while he still hadn’t memorized his math facts, he was, “surprisingly good at the big-picture concepts”.

Until Red and I came along, the middle school hadn’t tried including someone who tested as low as Red into regular education classes (although this trend is changing across the nation as more literature is available supporting this placement policy).

Red has a 1:1 para-educator (Known in our district as a SCIA, short for “special circumstance instructional aide”) so they questioned the placement but did not challenge it.

As many autie parents know, our kids do not test well, nor are they able to regurgitate facts on command in other ways such as verbally - this should not keep students out of regular education classes!

Sometimes it takes awhile for our kids to mull over, process and attach meaning to new information. If they are denied access to typical classes the gaps and differences just increase.

(I strongly urge you to not rush to make waves – remember it is a fine line of perception between advocate and adversary. I will write about this distinction issue in a future entry).

Our kids often appear to teachers and staff as not being capable of a regular classroom placement for their education.

With proper modifications, adjusted expectations, and support, most (not all!) students can do well in a regular education classroom, including our children with autism.

Students with autism may not appear that they are doing well by most standard measures. For example, Red’s 7th grade social studies teacher would ask him questions and engage him in dialog to discover what he understood of the material.

Not all teachers are willing or able to do this.

It was the Social Studies teacher’s impression that Red was fine but indicated that he was still guessing Red’s abilities intuitively.

A year later, during the standardized test that included the 7th grade material, Red scored higher in social studies than in any other area and even above most of his typical peers.

It took that long for Red to process the information.

Information he would not have had access to if he’d not been placed in a regular education class.

Correct use of modifications, proper supports and realistic expectations from teachers, staff and parents and even the student are all required to make regular classroom placement work for our children with autism.

Even with all of these factors in place, our students may have emotional or sensory requirements that preclude a regular classroom placement.

Keep in mind the whole child when considering their education placement.

Red was having some major trauma with bullies his 8th grade year (proximity helped but certainly didn’t fix this particular issue!) and was starting to not want to go to school to be abused by the bullies.

There, in the hallway, his case manager and I brainstormed and found some solutions.

Red loves music and especially band.

Red had previously shared that he wanted to take up baritone and continue trombone. We concluded that because the 8th grade Social Studies is not critical to the exit exam, Red could have 2 periods of band instead.

We also agreed that we needed to meet with the team to work on the issue of bullies.

The quick decision was possible because I was there at the school. I was available, I knew the players and I knew the questions to ask because of my proximity. Also, I had developed a strong and professional relationship with the staff.

More about Proximity

Proximity has many other advantages.

I have been available to make quick minor adjustments, back the teachers and reinforce rules, heard about long-term projects, answer questions about his ability to do certain things, and teachers were a lot more aware about how active I was in Red’s education.

Red's teachers knew, for example, that I read to him every night but that keeping a reading log just didn’t work well for either of us.

The teachers and staff witnessed me taking notes, and working on my Master’s degree and I asked them plenty of questions and they asked me questions too. Sometimes about Red but increasingly about other students with special needs.

Teachers took notice of me juggling being a single parent, school and work. Many had not considered just how challenging raising a child with autism is and that close to 80% of us are single parents!

As parents we really are doing everything we can and we tend to beat ourselves up when we recognize it never is enough.

When teachers witnessed how hard I was working to make Red’s school experience a positive one, they tried harder themselves.

Whenever they’d make comments about how well Red or I was doing I pointed out that I was lucky to be working at the same school and that most parents really do try their best too but that raising kids with special needs is not easy.

Probably my favorite part of being in close proximity to Red’s education was getting to hear the “Red Stories”.

Teachers would share an interesting moment that happened in their classroom regarding Red. In this way, I got to witness teacher’s growing as professionals and bonding with my son.

Red was making a difference in their lives.

Autism and the importance of proximity

Having recently completed my Master’s degree in Special Education (Just in time for a hiring freeze and layoffs in our district, county and state education system) I want to share some things I have learned by being in middle school classrooms, college classes (which tends to be idealistic but also drives trends) and the Mom of a child with autism.

At the inquiry of Mama Mara, I shared last week an overview of some of the things, I learned in Mick’s Blog, "A Master's in Education: What Mum Learned". I’d like to continue by expounding on those comments in the next several posts here.

It is important to never under-estimate the benefits of professional courtesy and proximity.

These are huge benefits.

I had the good fortune to work as a paraeducator in the same middle school my son attended for most of his middle school years. I was hired in the spring of his 6th grade year.

Perhaps it sounds overly melodramatic however, there is a good chance that my son is alive today because I was placed where people could see me and tended to stop and talk.

Red had wanted to ride his bike the 2 miles to school when the weather started warming up the spring semester of his 6th grade year.

We carefully worked out a route and went over it going over the rules of the road, being careful, watching for cars, and so forth. It was very difficult for me to let him go.

Red is fast.

Red has ADHD and Autism.

And a history...

Two years earlier on his first day ever riding his bike to school I was running behind him and witnessed Red as he wiped out on the bike when he fixated on his shadow and T-boned a school bus sign post. He was so zoned he couldn’t hear me shouting.

So there we were 2 years later...

I’d leave home and watch for him as I drove to the middle school. He obeyed the rules, and we made some new ones such as having him walk his bike at certain crosswalks instead of riding to protect him and others.

He was very fast.

Thank goodness teacher’s and a couple of the parents know him (how can anyone miss those curls flying out the back and sides of a helmet?) because they’d share with me that they saw him.

I always asked if he was following the rules?

“Yes, he was being safe, but he's so fast he almost got hit by a driver not paying attention”.

I heard this several times.

Then there was the day I heard the ambulance about a mile ahead of me.

My heart constricted.

I parked on the side of the road and walked into traffic even though the bike was not my sons and watched an EMT bandaging up another middle school student who’d been hit by a car.

I cried when I parked my own car in the school parking lot.

That night I asked Red if he’d mind riding his scooter instead.

I used the ambulance and that kid as an example for Red. I carefully explained that most drivers on the road at that time of day are idiots not paying attention and because he’s so fast they just can’t see him.

(Note the delivery of the message – I complimented his speed, and implied he was good at following the rules but the driver’s were not.)

He didn’t have a problem switching!

Thank Goodness!

I still hear reports from teachers who see him scooting along. Most make comments about how happy he looks as he scooters and also how fast he is but I haven’t heard about any more near misses.

So maybe proximity has helped keep Red alive and well.

I never would have made the decision to ask Red to switch to his scooter if I hadn't heard accounts of close encounters from his teachers and other parents.

Autism, Martin Luther King, and Character

Reflections of MLK Day

Aloha, Irene here stepping onto my soapbox...

What does the strength of character mean to someone on the autism spectrum?

They may not be able to articulate an answer, however I believe people with autism have strength of character measured in ways often unseen by neurotypicals.

How often is, “strength of character” as Dr. Martin Luther King uses the term in his speech, “I Have a Dream” bypassed or dismissed by those who do not reflect it themselves?

Think about this a moment;

Is it possible to recognize character strengths without possessing them?

Or would one dismiss the behaviors as odd or even as an oppositional defiant disorder (ODD)?

Seen today the behaviors of Rosa Parks and Dr. Martin Luther King are generally considered character strengths, yet their behaviors at the time were considered by many to be deviant and defiant.

So I ask again, is it possible to recognize strength of character if one does not possess the same character traits?

Here is my dream:

One day we will live in a world that accepts even the differences that are not as easily detected as skin coloring. One day we will embrace diversity as the key to the eternal kingdom.

Pondering Perfection

Note from IreneE: Do NOT schedule Christmas at our home when we are just finishing a class segment! Just when did you expect to get everything done?

Note from Irene: She’s right! But she doesn’t have to pout just because I haven’t been able to write regularly in - - - oops too long! Like I can’t feel the pressure and need to write on my own? It’s not the guilt though – there is a NEED to write! I gotta let go…

OK – this is Irene, the mortal. I’m not perfect and somewhere, sometime we will discover that the biggest sin we can create is in trying to be – so at the risk of sinning big time…

A box arrived for me in Red’s box from his dad.

I didn’t see him opening it as there was a lot of family over and I was probably distracted. So when he brings me over a smaller box and a handful of photos I was caught completely off guard.

In my hand was a picture of myself. Well not just me it was a picture of Red, Kasmira, my ex-inlaws and me.

There I was about 12 or 13 years ago staring into the camera. I was happy. Relaxed. Healthy. I was me as I see myself.

Me. Before my 2nd divorce – the one from the kids’ dad – before I’d ever heard the term “near affair” and understood why my marriage was so void.

Me. Before congestive heart failure and hysterectomy.

Me. Before my 3rd divorce.

Me. Before being a single parent.

Me. Before finishing my BA – after 25 years of taking classes on again and mostly off again.

Me. Before my daughter chose to leave me in favor of living with her dad.

Me. Before beginning the MASPED program I have almost completed. (6 more weeks of class!)

Me. Before the foreclosure notice was nailed to my home and my garbage cans were repossessed.

Me. Even before the word autism became a household phenomena for us.

Me. A life-time ago. Well, a dozen or so years ago anyway.

Me. With no worry lines, at my ideal weight – the picture of hope, happiness and health.

A picture of me with my kids (the ex-inlaws can be edited out!)

There were a few more similar pictures, some other pictures of the kids and an older picture of my great-grandparents in the box. No note.

Christmas morning I looked at that picture and almost cried with the rush of every emotion possible.

Where was that person now?

The image shows me as I feel a good chunk of the time – but the camera doesn’t reveal her anymore.

Images of me have been replaced with a cynic who looks 35 pounds heavier, with complexion the color of stress. Images show me as the pasty, worry- faced, fatter, less optimistic version of how I see myself.

After I got over the shock of seeing myself so happy and relaxed and healthy I wondered why the heck the ex would send me the box of pictures?

My inner cynic responded immediately – they are photos of me with his parents in the picture – he couldn’t send them to his parents and he didn’t want them – they were an “in-your-face” cheap shot. (yes – you’d have to know the ex to understand how I knew this).

And my inspiration.

OK – the photos were not all of his parents and me.

There were some of the kids and such and now I vaguely remember him telling me that my ex-husband #3 had given them to him to return to me – and he’d told me he was keeping the duplicates and would be sending the box out sometime – and he did.

Staring at myself in my hands is my inspiration. This is the year I reclaim myself.

I am more than a survivor – I Thrive with life. Truly!

I am Happy, Healthy, Wealthy and Wise. I am Blessed. This is not a destination but a way to enjoy the journey.

Making Mick and His Boy Sites

Irene and I have had a very busy day creating a new website, Mick and his Boy and a new blog to go with it, Mick and Boy.

What can I say, The muse was loose today. Mick and his Boy is a site about a dog brother's perspective of autism. Mick tells his and the boy's stories in the blog and site.Their mum helps by adding more information about autism and filling in the back story of Red. Mick and Boy is the blog where Mick shares his photos and day-to-day stories.

We have quite a bit to add to the site but it's shaping up nicely. Go on, check them out and please leave your comments on the blog!