When Songwriting Looks Easy

I craned my neck and ears through the receptionist’s window to hear exactly what was going on. Whatever happened to one-way glass?

Strumming an easy volley of chords, Reid was writing a song. What?

By himself. Independently. Smoothly.

Not in fits and starts. Not heavily prompted. No carrots dangling.

You may wonder why this is news. Reid has a musician Facebook page, his own website and is about to release Purple Party, his first full-length CD of original songs. But this was different.

Angela wasn’t helping. She was watching…and recording it.

She wasn’t providing brilliant scaffolding, fill-in-the-blank prompts, or the chord structure. She didn’t have the collaborative agenda that made Purple Party possible. Her heavily lifting wasn’t happening.

It had been done, make no mistake, in regular weekly doses over the past ten years during their music therapy sessions. She had worked diligently to create the space for this magical moment. That sounded effortless.

Reid extemporized a second verse:

Its time for you to go home and sleep…
What are your dreams for tonight? 
Thank you for coming and…
Goodnight Angela

“What about Emma (the watchful intern)?” was Angela’s only reply.

Here’s for you Emma. Goodbye Emma
Have a good night sleep…you don’t have any school 
But if you do…make it a good day. 
I’ll see you next week at Angela’s

“What about Leah (the receptionist outside the closed session room door)?” Okay, maybe Angela was prompting a bit.

Good night Leah
I hope you have a good night
See you next Thursday
I love you, Lelah

Had all the Talk Time interviews about songwriting – with Steve Denyes and Babbie Mason and Angela herself – affirmed and anchored in him what she had been developing all these years? Perhaps.

A tongue twisting bridge emerged like one of those compounding juvenile picture books:

Goodbye Angela Emma Lelah and Reid…

It was easy, like Sunday morning or Michael Buble in a lounge act.

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The Lighter Side of #Autism 

The Lighter Side of #Autism 

Most of is know that Autism parenting can bring with it many, many challenges. It’s exhausting and frustrating as well. 

That being said, there are also moments of peace and tranquility, where everyone is getting along. 

I can sit back and relax for a minute because in these moments, everyone is happy and at peace. I refer to this as the lighter side of Autism. 

 

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Continue reading The Lighter Side of #Autism  at .

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Living Outside the Box

As we drove to the “mental exam” SSI requires to qualify Reid for funding (now that he’s over 18), I prayed:

Lord, guard my heart. Whatever happens, I want to see Reid through your eyes. Whatever they say or determine, doesn’t change your plans for him. Guard my heart and his from the world’s misperception and lies.

I have learned from experience that these appointments, however routine, can leave me in despair. Not this time, I declared in Jesus name.

We walked into the generic medical office chosen to provide an outside opinion of Reid’s capacity, despite the paperwork and access to records I had already approved. It was one block from the Social Security office, in a neighborhood we don’t frequent. Nicer than DMV, yet reminiscent in a way.

Hellooo! Reid welcomed himself at the reception area appointed with framed prints of American veterans erecting flags.

Candy?! Miss, may I have one of those–from that bowl? There were two candy bowls. He gestured to the bigger one by “the lady on the computer.”

We checked in. I answered inane questions, as if I were Reid, on a form and clipboard:

Who drove you here?
Have you ever hurt your self?
Hurt others?
Do you see things others don’t see?
What disables you from working?
Have you received treatment for this?

The million dollar question on my mind was: Who writes these questionnaires? The process itself lacks dignity and reeks of ignorance and disregard. I wanted to rephrase every single one.

A woman called, “Rade” to which we answered. She took Reid’s weight, height and photo, then we returned to watch another scene from The Nutty Professor.

An underemployed female doctor lacking affect called us the second time. A very standard cognitive assessment ensued.

I’m ready for the interview! Reid said taking the hot seat in front of her laminate desk. The blinds were closed. I sat on the side as directed.

Are you his mom?

Yes. So far this was easy.

When was he diagnosed with autism?

Age 3.

What behavioral issues does he have?

All those associated with the spectrum. Keep it simple.

Didn’t he have any intervention, ABA therapy?  Maybe I was supposed to have listed those.

Oh yes. We did all that; it was just 15 years ago. He had a full-on home program, ABA, PRT, Floortime, the works.

Reid watched me, obviously wondering when it would be his turn. Seems like the interview is for me, doesn’t it? It’ll be your turn in a minute.

When it was, she asked his name. Check. Address? Check. Birthday?

June 4, isn’t that right mom? I nodded.

What year?

19…. I helped when he got stuck.

2004

That’s okay. She made notes.

How many days in a week?

Seven

How many months in a year?

Well, let’s see… He raised his fingers one at a time, in no particular rush.

January is 1, February is 2, March is 3….. He restarted around May…which is 5…then finished strong.

November is 11…December is 12. Twelve months!

Wishing she got paid by the hour, she smirked and moved onto another section.

What would you do if there was a fire in the building?

Get low and go! Reid said without hesitation in all seriousness, recalling two loud fire drills at school in the past month.

Our little-while doctor nearly chortled at the creative, appropo, and succinct response. She modeled a connect the dot numerical sequence. Reid completed his longer one in good time and handed her the paper.

It doesn’t make anything, he pointed out as if to say, what was the point of that?

No, there’s no picture, it took her a minute.

More than once, he took the easy road handing things back to her saying, it’s too hard. He seemed to have some opposite of test anxiety–maybe a new condition we could call “test familiarity.” He mimicked her prompts in anticipation like they were the lyrics on our Top 40 radio station.


She handed him the WAIS-IV blocks he’s seen a million times. He literally said, let me get comfortable here and pulled his legs up under him criss-cross applesauce in the vinyl barrel chair.

She flipped forward in the spiral for harder material, then back when Reid was stumped. Recognizing the drill, he called her out to save time, I need an easier one.

Can he read? She addressed me now.

Yes. She handed him a list of single words in a grid.

Reid played to her expectations, beginning at a labored speed.

See…live…water…journey…despite…

When he got to “qua–ran-tine” at the bottom of the page I couldn’t help but think again about getting him a cameo acting spot on Sesame Street. He shines at dramatic decoding, with or without Elmo.

Okay, I’m going to ask you to write some words now.

Oh, like a spelling test!  

She was more than cracking a smile now. Reid brings joy to the most deadpan of faces.

We’re all done then. I will submit my report. There should be no problem at all recommending him since he could not complete a 9-5 job 5 days a week.

Well, thank you for your time. What else could I say?

As we headed for the parking lot, the Lord gave me a word. It came out of my lips before I could think it up: 

Reid, you aced that! (high five) The gifts God gave you can’t be measured on a test. That way God gets all the glory, not us!


I put my manila folders and sweater in the back seat. Mom, let’s go! 

Yup, that was kinda boring but, at least you got to miss school. Let’s go!


In Him you have been made complete, and He is the head over all rule and authority Colossians 2:10



Neither this man nor his parents sinned, said Jesus, but this happened so that the works of God might be displayed in him. John 9:3

Search me, O God, and know my heart;
Try me and know my anxious thoughts;
And see if there be any hurtful way in me,
And lead me in the everlasting way. Psalm 139:24

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Why we Need World Autism Awareness Day

Today is World Autism Awareness Day. In this guest post, MN blogger Matt Davis shares what his son’s autism has meant for his family, and argues that there’s still much to do to ensure that people with an autistic spectrum disorder are treated with understanding and respect.

A year-long, punishing process of tests finally came to its conclusion with the words “autism spectrum disorder”, delivered in a paediatrician’s room. It was a tongue-twister that deliberately acted as a soft landing for the harsher truth: “your child has autism”.


The diagnosis assuaged the regular bouts of heartbreak I felt at Isaac’s regular bouts of distress. It was the alibi for his perceived anti-social behaviour. But I came to realise quite swiftly that a chasm existed between what some people knew about autism and what most people didn’t. If the condition hadn’t touched someone, it just wasn’t on their radar; autism awareness was minimal at best. On the other hand, professionals, experts and parents who had accepted their child’s diagnosis were awash with facts and immersed in the world of autism.


I joined Ambitious about Autism’s online community ‘Talk about Autism’ and quickly benefited; questions were posed and answered, discussions launched and new people nurtured with the help of its Community Champions. It became a safe haven from the everyday assault course of discrimination, generalisations, judgements, ignorance, exhaustion and difficulties that parents of children with autism battle.


So what is autism? An impossible question to answer with any semblance of brevity. For last year’s World Autism Awareness Day, Ambitious about Autism ran a Twitter campaign called ‘Autism is…’ asking everyone to share their thoughts, feelings and perspectives on what autism is to them. The answers tweeted invoked honesty, warmth, sadness and happiness – a pretty accurate flavour of what autism really is.


The campaign was such a success that the charity is repeating it this World Autism Awareness Day. I’m supporting it again because awareness is a big deal for me. Things have improved drastically over the last 20 years, but there’s still a long way to go. People just don’t know enough about autism. It affects 1 in 100 children, yet the condition is often misunderstood.


Autism’s myths are myriad. People assume Isaac won’t have eye contact, that he’ll be quiet and introverted, or that he must have mind-boggling talents. None of these statements are correct. Isaac is a boy you remember when you meet him. He is funny, inquisitive, determined – at moments tender and full of wonderment, but also unable to know his own strength at times. He loves to learn (if allowed to in his own way) and he never forgets anything.


For my family, autism has been a game-changer – but certainly not in a bad way. We don’t only have a bright, funny little boy – we have a heightened understanding of disability and other people’s needs too. For me #AutismIs heightened everything – love, sadness, stress, happiness.


My wife and I wanted to do something else to mark the day – the more people know about autism the easier life can be made for everyone affected by it, and of course we wanted to raise money for Ambitious about Autism, too. 


The Happy video above came about because my wife, a musician, received a video from her friend Abigail of her son Reuben who also has autism. In the video Reuben was singing Pharrell’s ‘Happy’, on his own, so perfectly, and you could see the joy he experienced as he sang. My wife decided to make a short film set to the song with Isaac and Reuben doing things that made them happy. Simple and honest, just like any other children. We wanted to celebrate the boys. Autism is something to be respected and acknowledged, but we wanted it to be about the boys having a ball.

Long before my son Isaac was diagnosed with autism at the age of three, I saw how the world, with all its peculiarities and obstacles, was that little bit more hostile for him. Seeing him struggle – often articulated as screams, anger and crying – seemed so unfair to me. I didn’t subscribe to the ‘terrible twos’ or ‘naughty toddlers view’; there was something about Isaac’s tears that was different. 


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A Candle In A Hurricaine


This post is probably going to come off a bit harsh.  If nothing else, a bit rough.  There is a hard reality to this life, one that often sits in the shadows and no one wants to look behind the curtain to dust the windowsill.

The past year has been a pretty rough one in the AMD household.  Sparky is hitting puberty at this point (he is 13 now) and all of the changes and hormones are making things much more difficult.  He doesn’t understand what is going on and he thinks there is something wrong with him.  Yes, he’s been told by everyone from me to the psychologist to the mobile therapist to the mental health therapist that it’s all normal and he’s ok.  For all he understands, we may as well be talking to the wall.

You feel like a candle in a hurricane
Just like a picture with a broken frame
Alone and helpless
Like you’ve lost your fight
But you’ll be alright, you’ll be alright

The past several months have led to a surge in behaviors as he has both regressed and escalated.  His coping skills and ability to manage has regressed.  His behaviors have escalated.  At the moment we are working overtime to keep him safe.  I think the worst of the issues we face is a strong elopement urge.  His need to wander, especially at night.  If you recall he did this years ago, during the daytime, but it was rare.  It’s a more common occurrence now and this time, at night.  He still has absolutely no sense of danger.  How much more frightening can you get? 

‘Cause when push comes to shove
You taste what you’re made of
You might bend, ’til you break
‘Cause it’s all you can take
On your knees you look up
Decide you’ve had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand,
Then you stand

I always took for granted that the house alarm would work so well to keep him in the house.  That was quickly erased when he made the connection between the key fob on my keys and the house alarm.  About two weeks ago, just as I was falling asleep, I heard the door open.  He used the fob to disarm the system and go right out the back door.  Being deaf I never actually heard the crazy loud beep of the system disarming (but it must have roused me subconsciously enough to hear the door).  I don’t even want to think of what would have happened had I not woken up.  We live in an area where we are surrounded by main roads.  He could have been gone in no time.

Life’s like a novel
With the end ripped out
The edge of a canyon
With only one way down
Take what you’re given before it’s gone
And start holding on, keep holding on

It doesn’t end there.  Naturally.  Why would it?  His mood is no longer stable.  We can’t seem to find a good balance anymore.  He’s been depressed, aggressive, and self-injurious.  I ended up finding him a new psychologist just two months ago.  Around that same time we added in Family Based Mental Health Services (the most intensive services you can get).  We adjusted his medications.  Everything feels like a waiting game anymore.  We are now looking at taking him to one of the major hospitals a couple hours away to have him evaluated by the psychologists there (Cleveland, maybe Pittsburgh) and see what they can do.  I don’t seem to be catching a break and it doesn’t look like it’s going to happen any time soon.

‘Cause when push comes to shove
You taste what you’re made of
You might bend ’til you break
‘Cause it’s all you can take
On your knees you look up
Decide you’ve had enough
You get mad, you get strong
Wipe your hands, shake it off
Then you stand,
Yeah, then you stand

I now live in this constant state of fear.  I lock up the keys when I go to bed.  I sleep lighter than a feather.  Every night it’s the same routine:  Goodnight, I love you, Stay safe, No shenanigans, Stay in bed, Right to sleep, DO NOT LEAVE THE HOUSE.  Being so disadvantaged I am terrified he’ll find a way out and I won’t hear him.  By the time I discover it, it will be far too late.  I thought I knew was sheer exhaustion was.  I was totally wrong.  I sleep all day when he’s at school.  I can’t concentrate.  My migraines are sheer at peak level “Hell.”  To say I’m stressed is probably the understatement of the century.

Every time you get up
And get back in the race
One more small piece of you
Starts to fall into place
Oh

All I can do is keep pushing, keep moving.  Just pick myself up, dust myself, and keep going.  I’ve been fighting for so long I can’t possibly stop now.  There are days, I won’t lie.  So.  Many.  Days.  Where I just want to throw my hands in the air and give up.  I’m so worn down, so frustrated, so exhausted, so defeated.  I cry more now than I think I ever have, I actually cry daily, and it doesn’t take much to start the flow.  I often feel like I’m riding an emotional roller coaster to hell and back again.  Then every morning, when I wake up and he’s safely in his bed still, I feel better.  I breathe a little easier.  I put on my happy face mask and thank God for keeping us through another night. 

Yeah, then you stand,
Yeah, yeah, baby
Woo hoo, woo hoo, woo hoo

Then you stand, yeah, yeah

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