Day #198 – Be One With Elsa

Disclaimer!!!  Keep in mind as you read this, I know it is MUCH easier said than done.

Last night I was asked (through a third-party) to provide some advice and guidance for a mom who has a 2 1/2-year-old that was recently identified as being on the spectrum.  I gave the basic stuff…

  • Make sure they are getting enough sleep.
  • Don’t yell.
  • Find something that soothes – a toy, a blanket, music.
  • Work with and trust the professionals.
  • Trust your instinct.
  • Read all you can.
  • It will be tough.
  • It will be okay.

Then, I was told that the child started having meltdowns in public places.

To which I replied, “Tell the mom that she’s going to need to develop a thicker skin.  She’s going to have to let it go.”

Then, I could stop signing (in my head)…

Don’t let them in,
don’t let them see
Be the good girl you always have to be
Conceal, don’t feel,
don’t let them know
Well now they know

Yes!  Let people know.  The only way that you will be able to create a community for your child is to let others know.

Our natural tendency is to NOT let others in, to NOT let them see.  Our natural tendency is to only show the good, to conceal what is really happening.  To not let people in.

I beg of you – LET IT GO!!!

Tell others.  Tell everyone you can.  Yes, people will get tired of hearing about it.  That’s too bad. Tell people – because once people know they will help you.  If they won’t help you – at least they will develop some patience, some understanding of your child.

 Let it go, let it go
Can’t hold it back anymore
Let it go, let it go
Turn away and slam the door!

I don’t care
What they’re going to say
Let the storm rage on,
The cold never bothered me anyway!

Then, I replaced the word cold with….

Stares.  Ignore the stares.  People will stare.  They don’t know your child.  They have NO idea what you go through…daily – minute by minute.

Then, I replaced the word cold with…

Glances.  People will try to be nice, but they are still looking and judging.  Forget it.  You and your child are not the problem. They will have to deal with their own Judgey McPudgey pants.  Wait for the day that they love a child who is ‘different.’

Then, I replaced the word cold with…

Advice.  All kinds of people will give you all kinds of advice.  What works.  What doesn’t work.  What you should do.  What you shouldn’t do.  Take it for what it’s worth.  Remember that people are trying to be helpful.  Simply nod and say thank you.  Then, trust your instinct.

Then, I replaced the word cold with…

Modesty.  Get over it.  Your child will pass gas, loudly, in public.  You will find yourself giddy because their digestive system is moving.  You could care less about the ‘appropriateness’ because this may mean that their poop MAY be closer to normal.

I continued to sing (in my head of course)…

It’s funny how some distance
Makes everything seem small
And the fears that once controlled me
Can’t get to me at all!

Know that it will get better.  There will always be days – but it will get better.  Not every day is like another. Once you have distance from that ‘bad’ day – you’ll know you have learned…and that you can move forward, better equipped.

You will find that your fears will subside, they will no longer control you.  At first, autism is scary.  It’s especially scary because it is SO different for each child…-One child talks nonstop, the other not at all.

One child flaps their arms, the other may clap, still another?  Nothing at all.
One child can’t sleep, the other sleeps all of the time.
One child cannot stand any smells, the other can’t smell.
One child cannot stand noise, the other can’t get the radio loud enough.

It’s time to see what I can do
To test the limits and break through
No right, no wrong, no rules for me,
I’m free

There is no ‘right’ answer, nor is there a ‘one-course’ treatment.  That is scary business.

Just keep trying though – you will find that you will find the right course.  Don’t be afraid to try anything and everything – after all this is your child.  Test the limits to find a breakthrough.  Because of the nature of the spectrum there is no right or wrong…there are no rules on what should or should not be done.  No matter how insane it sounds (see Day #147 – You Wanna Brush My What?), try it.  What will you have lost if it doesn’t work?  Why not try?

Help your child be free.

Let it go, let it go
I am one with the wind and sky
Let it go, let it go
You’ll never see me cry
Here I stand
And here I’ll stay
Let the storm rage on

Find power in autism.  You will find that you do become one with the spectrum.  You see the world through different eyes.  Stand strong, be brave.  Let the storm rage on around you – but be the rock your child needs you to be. Allow them to be the eye of your storm. (see Day #136 – Eye of the Storm)

My power flurries through the air into the ground
My soul is spiraling in frozen fractals all around
And one thought crystallizes like an icy blast
I’m never going back, the past is in the past

Yes, there is a certain power in being a spectrum parent.  Before autism entered my life, I was much more docile.  I didn’t like conflict – NOT AT ALL.  Now?

I don’t love it, but autism helped me find my backbone.  My power. My voice.  I will not go back to a voiceless world – I have been (and sometimes still am) the voice of advocacy for my child.  I had to be.  Be the voice when they cannot find/use their own.  Find your power.  Find your courage and wield your voice and power to anyone – to teachers, associates, aids, Principals – anyone who has contact with your child.

Your life will never be the same and that is okay.   Don’t look back and think about what your shoulda, woulda, coulda – that won’t help your now.  Let the past be in the past.

Here I stand
In the light of day
Let the storm rage on

Autism never bothered me anyway!

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7 thoughts on “Day #198 – Be One With Elsa

  1. Awesome! Thank you! That was just what I needed today. We were thinking things with my nearly 13 year old aspie son were getting better but found out some things from school that really let the wind out of my sails. I appreciate your positivity and if people say you are too positive maybe this isn’t there everyday life when you crave the positive. There is so much going on and not a lot of it encouraging. Thanks for being you and doing this.

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    • Thank YOU! I’m always amazed at life in general and how many times what we need to hear/see arrives at our door step. Keep on, mom…you know what’s best. Have faith in yourself!

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    • Thank you! I do find many people reaching out who have other ‘stuff’ going on. I’m so thankful my words can be so helpful to others!

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  2. Pingback: Day #327 – Indexing | 366 Days of Autism

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