Autism Night Before Christmas

I recently came across the following beautiful poem on Autism Daddy's blog.

Autism Night Before Christmas by Cindy Waeltermann

Twas the Night Before Christmas

And all through the house

The creatures were stirring

Yes, even the mouse

We tried melatonin

And gave a hot bath

But the holiday jitters

They always distract

The children were finally

All nestled in bed

When nightmares of terror

Ran through my OWN head

Did I get the right gift

The right color

And style

Would there be a tantrum

Or even, maybe, a smile?

Our relatives come

But they don’t understand

The pleasure he gets

Just from flapping his hands.

“He needs discipline,” they say

“Just a well-needed smack,

You must learn to parent…”

And on goes the attack

We smile and nod

Because we know deep inside

The argument is moot

Let them all take a side

We know what it’s like

To live with the spectrum

The struggles and triumphs

Achievements, regressions…

But what they don’t know

And what they don’t see

Is the joy that we feel

Over simplicity

He said “hello”

He ate something green!

He told his first lie!

He did not cause a scene!

He peed on the potty

Who cares if he’s ten,

He stopped saying the same thing

Again and again!

Others don’t realize

Just how we can cope

How we bravely hang on

At the end of our rope

But what they don’t see

Is the joy we can’t hide

When our children with autism

Make the tiniest stride

We may look at others

Without the problems we face

With jealousy, hatred

Or even distaste,

But what they don’t know

Nor sometimes do we

Is that children with autism

Bring simplicity.

We don’t get excited

Over expensive things

We jump for joy

With the progress work brings

Children with autism

Try hard every day

That they make us proud

More than words can say.

They work even harder

Than you or I

To achieve something small

To reach a star in the sky

So to those who don’t get it

Or can’t get a clue

Take a walk in my shoes

And I’ll assure you

That even 10 minutes

Into the walk

You’ll look at me

With respect, even shock.

You will realize

What it is I go through

And the next time you judge

I can assure you

That you won’t say a thing

You’ll be quiet and learn,

Like the years that I did

When the tables were turned……

When Hope Invades Our Dreams

A few days ago, Gabriel's old school held their annual Christmas concert.

I couldn't wait to see any photos and videos of the event on fellow parents' Facebook pages, and I wasn't disappointed.  It was wonderful to see all the kiddies dressed up in their costumes, partaking and having fun!

But.

There was a twinge of sadness.  

Why?

Because Gabriel wasn't there.

The feeling soon subsided and I didn't think about it again.  Or so I thought.

Last night, my subconscious decided to get involved.  

Photo credit : http://www.wired.co.uk/news/archive/2013-08/14/remembering-dreams

I dreamt that Gabriel was back at his old school, sitting on the floor next to the other children.  They were all sitting in a circle, practising the songs for their Christmas concert.  

Gabriel wasn't singing and I have, so far, never dreamt of him talking.  But something extraordinary did happen.  He looked at the little boy sitting next to him and passed his toy car to him to play with.  The little boy looked back at him and took the car, smiling.  Gabriel then looked at his fellow classmate's hand and touched it with his own hand.  They then looked at each other and smiled.  He was connecting!  

It was hard to wake up and have this fresh recollection in my memory.  It's bad enough when the conscious mind longs for something but not fair when the subconscious gets involved ;).

Some might say it is a selfish longing, but I know how great it is to connect with another person.  

I want Gabriel to experience it too.

A Wonderful Night's Sleep!

Gabriel has always been a notoriously bad sleeper.

Many nights he will wake up - usually for a 2 to 3 hour stretch.  He will just lie in his bed, babbling away, wanting G-Dad or myself to lie next to him.  It is as if his brain cannot switch off and allow him peace.

There has only been a handful of nights where he has slept through, in his 4 1/2 years.

Until Saturday night.  

Gabriel fell asleep at about 8:30pm.  He then proceeded to sleep through the entire night, awaking at 9:00am on Sunday morning!  He has never, ever, slept that late!

Metaformin and Neurexan have never managed to accomplish this!  Nor has a nightly fan (in case he was hot and for the white noise effect), body massaging, lavender oil - you get the picture.

So what did it?

We can only surmise this little beauty played a key role in it.

We purchased this godsend (am I jinxing it by saying that?) the Saturday morning - the Kitz Air Purifier and one of the concentrated oils - Lily of the Valley.

We had noticed Gabriel's nose was getting blocked at night (we have to sleep with our windows closed for security purposes) and wondered if allergies weren't, somehow, involved.  So, we thought, let's try an air purifier.  

Whether it was the purifier, the Lily of the Valley oil (which claims to calm nerves and promote restful sleep), or the white noise generated from the machine, only time will tell.  

Long may it last!

If There Was A Cure

This is one of the most heated questions in the autistic community - if there was a cure for autism, would you take it?

Firstly, I think the whole uproar over this debate is fueled by one little word - cure.  

According to oxforddictionaries.com, the definition for 'cure', in this context, is:

"Relieve (a person or animal) of the symptoms of a disease or condition"

Photo Credit : http://www.greatschools.org/special-education/LD-ADHD/1897-no-autism-cure.gs

Many parents with children on the spectrum take great offense to this word - it implies to them that something is wrong with their child, that they have a disease.

And many individuals on the spectrum, who are on the high functioning end, tend to get upset about this and feel they don't need any curing.  And yes, those who are very gifted such as Jacob Barnett, might not have their talents if they weren't on the spectrum.

But what about those who are on the lower end of the spectrum?  Those who are in a constant, daily struggle with their bodies.  Those who can only communicate through screaming, crying or self-harming?  Those who suffer from such anxiety, they cannot bear to hold another person's hand, let alone walk through a busy shopping complex?

Or those individuals who get so frustrated, because they cannot speak. Because everything is so loud.  Because they are unable to always perform the smallest task, such as tying their own shoelaces.  Because their minds' function well but their bodies have a mind of their own? And what about those who hardly sleep? Or who wander off and get lost?  

For those on the lower end of the spectrum, it interferes with everything in the individual's life.  It interferes with how the person can function, communicate, socialise, live.

Cure.  Heal.  Help.  

It doesn't matter how you word it or what you call it.  What matters is; if you had the opportunity to reduce or even relieve the above challenges. 

Would you?

Gabriel's Progress Report 1

In the short amount of time that Gabriel has been home schooled (roughly 4 months) and considering that he only has 2 hours a day, 4 days a week of ABA therapy, he is doing remarkably well.

Here is what we have noticed :

1. There is a lot more eye contact.  At times it is for a few seconds and other 

    times for a good minute.  

2. He is so much more verbal.  Although most of his speech is echolalia-based, 

    he knows when to use the words 'up' and 'come'.  At this point, G-Dad and I 

    are just thrilled to hear him speak!

3. We have noticed he has far fewer meltdowns.  This is freaking awesome!

4. Gabriel is a lot more relaxed and confident.  He is more willing to try things   

    (except new foods).

5. There is far less bolting!  Before, we would have to keep a firm grip on his 

    hand.  Now, Gabriel is starting to understand he needs to stay close to us 

    when out and about.

6. Gabriel is far more responsive when called by his name.  He will often look at 

    us when we call him.

7. He loves to learn!  He really does and looks so forward to G-Mary Poppins' 

    visits.

8. His fine motor and gross motor skills are improving dramatically! He is

    starting to cut paper with scissors more often and more confidently, and his 

    ball throwing and kicking skills are slowly improving. The following photo 

    shows how beautifully he is progressing drawing with a set goal (along 

    dotted lines).  Before, there wasn't a chance he would have even attempted 

    this!

9. Finally, his tactile tolerance is improving dramatically.  He will touch shaving 

    cream, bubbles etc. without gagging or flinching!

These, for a parent of a typically developing child, may not seem like monumental achievements, but trust me, for a child on the Spectrum, they are GIGANTIC!  

Sadly, the only downside we have discovered to having Gabriel home schooled, is that he seems to have regressed when it comes to social interaction/tolerance with other children (not that there was much to begin with and is also anxiety driven). But this was to be expected and is being worked on, with monthly structured play dates, so as not to overwhelm him.  We just need to remind ourselves that Rome wasn't built in a day!

Thank you for reading Gabriel's 1st Progress Report.  We hope you are as immensely proud of him as we are!

Looking For Some Healing

Photo source : http://www.prweb.com/releases/EnergyHealing/ShamanicTraining/prweb10051067.htm

For many children (and their parents) on the Spectrum one of the hardest and most challenging issues to deal with is self-injury.  

Some children bite themselves, some hit themselves, some claw at their own skin until they bleed. 

Gabriel's number 1 choice of poison is head banging.

If he is happy, sad, angry, hungry, tired, in pain or other reasons we don't yet know of, he will search out a wall or floor (or anything with a hard surface), position himself and start to bang his head. Slowly, at first but gaining momentum and intensity very rapidly.  And I can see on Gabriel's face, he cannot always control it and it is very painful for him.

Nevertheless, it drives G-Dad and myself stark-raving, shit-dilly, wishing-we-could-reach-for-the-vodka, certifiably bonkers!  

It's not just the sound or the vibrations through the freaking walls but the great concern of what potential damage he could be doing to his head - and brain.

At a recent workshop I attended, hosted by the AWC, the speaker said that they have seen many kids who head bang that go on to develop epilepsy later on.  I can understand why. Which is why I want to request an EEG be done when we visit Gabriel's paediatric neurologist in January - just to rule out that nothing sinister is causing him to bang his head.

I don't want to change Gabriel.  But I do want to heal the areas that get in his way of leading a happy, healthy life.  

I equate it to someone who has migraines.  If they are given an option to help heal them of their migraines, wouldn't they take it?

If anyone who is reading this has had the same experience and found methods to help - conventional or unconventional - we would be more than happy to hear from you.

Until then, we keep the fires of Hope burning.

So, Why Homeschooling?

In January 2013, Gabriel started attending a Toddlers Group at a wonderful Montessori school.  He was 2½ years old at that stage.  His awesome teacher at the time, started reporting back concerning behaviours - hand flapping, escape behaviour (wanting to be outside when the other kids got noisy) and the occasional head banging.  

G-Dad and I have always loved the Montessori method of teaching and really wanted things to work out.  We promptly started seeing a speech therapist and an occupational therapist, after which we started, slowly but surely, searching for a paediatric neurologist.  After the first term, Gabriel seemed to settle down nicely into his environment, while still displaying the above behaviours, albeit a lot less intense.

Fast forward to January 2014.  Gabriel had graduated into the pre-schoolers group which required him to move to the main, bigger, school in the heart of the majestic Cape wine lands (the view is to die for!).  The behaviour issues returned, with a vengeance.  We had now received Gabriel's official diagnosis from his paediatric neurologist and started looking at ways to ensure he could remain in the school. We started exploring avenues of having a facilitator accompany him to school, so that he could have more one-on-one assistance.

During this time, we stared seeing a fantastic psychologist, recommended by Gabriel's paediatric neurologist, to do a lengthy assessment to confirm her diagnosis.   
   
Unfortunately, trained facilitators are very expensive and medical aids do not cover their fees.  So we tried sending Gabriel's nanny to assist.  When this didn't work out, we approached a wonderful woman who had started teaching Gabriel how to swim (after two swimming schools turned him down, but that's a whole other blog!).  Gabriel's psychologist said all we needed was someone with a great heart and lots of patience.  And G-Dad and myself kept thinking of her, immediately.  We approached her, she agreed (thank goodness!) and she started attending the school, with Gabriel, for a few hours a week.

Although he responded to this very nicely, Gabriel still displayed behavioural issues.  I then asked Gabriel's psychologist to do an observational visit at the school and report back.  And did we receive disheartening news!

Gabriel was spending his entire time at school trying to self-soothe - to calm himself down.  This was preventing him from learning.  Children on the Spectrum tend to have sensory processing issues, so children playing nearby might come across as incredibly loud, for example.  So loud, that it is physically painful to be near them.  Throw in bright lights, strong smells and you have a recipe for disaster.

The psychologist's recommendation?  Take Gabriel out of school immediately and have him schooled at home where he feels the safest, calmest and happiest, using an ABA-based program.  I remember thinking that this man had better be right, as we were placing all of our faith in him.  

It is the best decision we have ever made.  Within a month we had removed Gabriel from his school (which we do miss), cleared out the spare bedroom and converted it into his own learning/fun space.

Gabriel's facilitator/tutor (same awesome lady as mentioned above) - from hereon out now known as G-Mary Poppins, comes to our home, 4 days a week, two hours each day.  He receives one-on-one tutoring and is flourishing.  He is so much calmer, is able to focus, is mimicking words and imitating.  He is showing imaginative play and having fun!

So yes, Gabriel's psychologist was right ;).