Monday, 1 December 2014

The Little Humongous Things

One of the gifts that Autism gives is one of unexpected surprises.

When Gabriel was originally diagnosed, G-Dad and I decided that the Developmental Milestone Chart had to take a flying leap out of the window.  Not because we don't believe these targets can be reached, but to remove the pressure of WHEN they should be reached.

You learn to take things as they come; the good and the bad.

And when the good happens, it feels like you've won the lottery!

So what happened?

Gabriel has a toy car garage.  Here's a photo of it.



If you look closely, you will see the top floor is anchored on grey poles to the bottom floor.  

However, there are only two grey poles - the other two are in Narnia, no doubt!

The problem this creates is one of balance.  The more cars on top, the more the top floor tilts until it eventually falls off.

So on Saturday, I was busy making Gabriel's bed.  G-Dad appeared in the doorway, with an absolute look of dumbfoundedness on his face.

"Our kid will never be able to go to a traditional school," G-Dad uttered.

"Why?"  I asked.

"Come and look!"

Led by the hand to the lounge, I was then instructed to lie on the floor by the toy garage, near Gabriel.  

"What do you see?" G-Dad asked.

I looked.  And then it caught my eye.  This is what I saw :


For your convenience (and my overwhelming urge to brag) I took the liberty of circling the amazing spot-the-difference area for you :).  Sorry the photo is such bad quality.  I took it on my phone and with much excitement.

Gabriel had built 2 x make-shift poles to balance his toy garage, using his building blocks (note the one in the foreground)!

On.  His.  Own.  

No help, no suggestions from us, his idea and creation - 100%.

Needless to say, G-Dad and I couldn't stop congratulating Gabriel and he was wondering around, with a big smile on his face.

Please feel free to smile about this for the rest of your day too :).

Tuesday, 25 November 2014

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……

Friday, 14 November 2014

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.

Monday, 10 November 2014

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!

Monday, 27 October 2014

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?

Monday, 13 October 2014

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!

Tuesday, 30 September 2014

How ABA Is Helping Gabriel

I'll admit it - the following three letters used to make me cringe : ABA 

What is ABA?    

The scientific definition is : Applied Behaviour Analysis is defined as the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviours to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement of behaviour.

In other words - it is a method of teaching, using scientific principles.

Typically developing children learn from observing their environment.  It is as if they are born with a blueprint for synaptic connections to form in their little brains, making sense of what they see, taste, smell, hear and feel so much easier.

Children with autism don't have this luxury.  They have to learn in a completely different way.  

Here's the analogy I am going to use to explain how I think they learn :

Someone you know has experienced a stroke.  This stroke has caused disruptions (or damage) within their brain.  They can speak (in their mind) and cannot understand why when they try to lift their arm up, nothing happens.  

Rehabilitation starts soon after.  They have to relearn how to do the most basic tasks, such as brushing their teeth.  How do they learn?  The task is broken down into small steps and repeated, over and over.  This forms new synaptic connections, often in different areas of the brain.  And slowly, over time, they relearn (or learn) how to do many tasks.

ABA, in the broadest sense, basically works on the same principle as Rehabilitation.

So why did I used to cringe?  Well, G-Dad and I once visited a special needs school that applied this method of teaching.  After seeing a child, secured in a tiny booth in front of his tutor, for hours on end, being forced to learn what THEY wanted him to learn, we left quite traumatised.   We didn't want that for Gabriel.

So we compromised.  Instead of 5 hours of ABA a day, we chose to have 2 (our goal is 3). Instead of in a rigid environment, we chose our home, with the freedom to divert from the program for short intervals.  



I often feel sorry for Gabriel's ABA therapist as I constantly challenge and question EVERYTHING. Why do we have to do it this way?  Wouldn't it be better if we did less? I want him to be able to generalise, wouldn't such-and-such prevent this? We want to teach Gabriel how to think not what to think etc.  

It isn't just the ABA program but who is teaching him the program that matters alot too.  Enter G-Mary Poppins.  I cannot sing her praises enough!  She reads Gabriel so well and knows when to push and when to back off.  She makes learning fun for him, which is of the utmost importance.  If Gabriel is motivated, he partakes and learns.  And he is learning.  It is magical to watch.  

ABA does not work for every child on the Spectrum.  But it has been shown to be the most successful teaching method, so far.  Some kids will be on the program throughout their learning years and others only need it for a short period of time.

So for now we wait, patiently, to see what the future holds in store.  We'll keep you posted ;).

Tuesday, 16 September 2014

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.

Wednesday, 10 September 2014

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 ;). 

Monday, 1 September 2014

Just One Wish




One of the hardest parts about having a child on the Spectrum is if they are 'non-verbal'.

Non-verbal doesn't mean not being able to speak.  It means to lack the ability to use language in a meaningful way.

Gabriel is classified as non-verbal.  He does not engage in conversation that is language appropriate.

The following is an example of such a conversation :

G-Mom : "Hi, my angel.  How was your day?"

Gabriel :  No response.

G-Mom : "Did you have fun today?"

Gabriel :  No response.

G-Mom : "Want to go for a drive in the car?"

Gabriel : "Wawawa! Ca!"

So when Gabriel is sick, angry or hurt, G-Dad and I have to observe his body language or undergo an elimination process (like one does with a crying newborn) to try and identify the problem.

Another example is when G-Dad and I arrived home from work the other day, to find Gabriel had tripped and fallen at home while running around.  We could tell he had hurt himself because he was limping.

G-Dad : "Gabriel, can you show me where it hurts with your hand?"

Gabriel : No response.

G-Dad : "Does your knee hurt?"

Gabriel : No response.

So we had to wait and see where any bruising or swelling would eventually show, to indicate to us where he had hurt himself (turns out it was the outer part of his ankle).

Gabriel has come a long way in his verbal learning, considering that two years ago he didn't even attempt a verbal response.  Speech Therapy hasn't proven to be fruitful so far.  Not because it doesn't work, but due to Gabriel not being able to maintain joint attention for a few minutes at a time (make eye contact).  This is an important part of Speech Therapy.

Gabriel has started doing something great, however - Echolalia.  This is when a child repeats words that they hear, whether from a TV show or from adult conversation.  And this is an excellent development because it indicates the start of language development.  So to jump onto this silver lining, we are joining a video-based programme soon that will help expand onto this.

So yes, we really, really wish that Gabriel will walk into our room one day and say something, anything, leaving our jaws dragging along the floor.

We really do believe that day will come.

Friday, 22 August 2014

Thank You!


G-Dad and myself would like to take this opportunity to say a massive 


Photo Source : http://www.tnparents.com/our-voicesblog/thank-you-legislators

 for the extremely generous donations we have received so far, for Gabriel.

We cannot express enough how grateful we are and how much your contributions will help in ensuring Gabriel’s therapies continue.

Thank you for being one of Gabriel’s Angels.

Tuesday, 19 August 2014

Living with Autism - A Parent's Perspective

Photo compliments of The Brilliant Assistant
http://www.thebrilliantassistant.com/logos/#!prettyPhoto[fancy_img_group_370]/7/


Imagine a young, foreign, boy arrives at your door.

He comes from a remote village, from the edge of the world where they speak a language never before heard of. He doesn't seem to understand the language that you speak and you do not understand his.  As you can imagine, this would make communication difficult. In time, he seems to start to understand your language, but you still do not understand his. So he communicates by leading you around by the hand, "throwing" it towards what he wants.  If you still battle to understand him, he becomes, understandably, frustrated. This results in episodes of screaming and, often, what appears to be self-injurious behaviour - head-banging or head slapping. Often, talking to him and attempting to physically comfort him doesn't stop this from happening.

Being from a primitive place, he hasn't had to endure all of modern living's inventions. His senses seem to be especially heightened and he seems to battle to filter out noise, strong smells and bright lights. This, I would assume, has to be scary for him and make him very anxious, especially when he is tired.  I would equate it to always expecting someone to jump out from behind every corner, screaming at you. Sometimes I think he would appreciate a mute button on a remote control of life.

Most foods seem to feel really strange in his mouth.  He gags really easily when just looking at some foods.  So he has a very limited diet as a result - with lots of supplements crushed up and hidden in the foods that he will eat.  

It is no wonder, from the above, that he seems to love a very rigid routine.  I guess I would also like to know what to expect, moment to moment, in such a strange place.

He appears to battle a lot with sleep, often waking up for a three hour stretch each night. This is one of those great mysteries.  Does he just not need a lot of sleep or does he battle to relax enough to fall into a deep sleep?

He appears to be very interested in his fellow modern child, but seems unable to engage with the child. Perhaps the communication barrier is an issue or maybe he finds them unpredictable?  Maybe he just doesn't know how to interact with them?

So this is a just a small glimpse of what it is like for us, as parents, living with Autism.  It can be very challenging and emotionally exhausting but very rewarding too.  I can only imagine how hard it must be for Gabriel.  That is why we call him our Champion.

One day, I have no doubt, Gabriel will be able to post his own blog here, explaining what it is like for him to live with Autism.

Until then, we continue this journey together, as foreigners.

Tuesday, 12 August 2014

Something Magical Happened

The thing about having a child on the Spectrum is you almost never know what to expect.  For some reason, they weren’t born with a manual either ;).

Because their development in this world is quite different, one cannot predict when they will crawl, walk, talk etc.  So when they do, it’s like Santa Claus came to visit early!

On the evening of the 7th August 2014 something truly magical happened.

Gabriel’s daddy (let’s call him G-Dad from now on) bent down to kiss Gabriel goodnight on the cheek.  Every night, it is the same routine.  G-Dad bends down, says “kiss Daddy goodnight” and he then proceeds to kiss each of Gabriel’s cheeks.  Gabriel then toddles off to bed.

This night was different.  G-Dad bent down, said, “kiss Daddy goodnight”. Gabriel looked up at him, puckered his lips and gave his Daddy his very first kiss!

Now to many of you, this might not seem like a phenomenal event.  Let me explain why it is.

It has taken Gabriel 4 years, 1 month, 3 weeks and one day to give his very first kiss.  Ever. 

Naturally, I jumped in and said, “Can Mommy have a kiss too please?”

Lips puckered up and smooch.

Best kiss ever!

Photo credit : http://www.redbookmag.com/cm/redbook/images/VT/rbk-12-bondingkids-kiss-lgn.jpg

Monday, 11 August 2014

The Autism Diagnosis Aftermath – A Parent’s Perspective

When a parent receives the official, in-black-and-white, no-turning-back, diagnosis of ASD (Autism Spectrum Disorder) a journey of self-discovery begins.  You climb onto that emotional see-saw and thousands of different thoughts race through one’s mind. 

It is then that you realise that you are actually in the process of wading through the five stages of grief.

Photo by : Stephen Criscolo
https://www.facebook.com/stevosshots
http://flickr.com/photos/stevosshots

Denial

He doesn’t seem that autistic?  Doctors make mistakes all the time.  Why do they feel the need to label everything?  He’ll probably outgrow it.

Anger

As time passes, reality is sinking in.  Why him?  It’s not fair!

Bargaining

We will do whatever needs to be done if he can just be ‘healed’.  We will sacrifice whatever we need to if he could just start to talk.

Depression

As time progresses further, depression starts to set in, and guilt.  A whole lot of guilt.  What did I do wrong?  Was it the time I fell in the shower during the 1st trimester? Or the time he rolled off of the bed when I turned my back for 2 seconds?  Will we ever hear him speak?  Hear those 3 wonderful words, “I love you”?  Will we ever see him play with a friend?  Or hold their hand?  Will he be able to be independent, able to take care of himself?  What if we die before he grows up?  The lack of not knowing what will happen in the future can be daunting and overpowering.  Some parents stay in this stage for many years.  And some bypass it completely.

Acceptance

And finally, you get to a point where you have to make a choice. 

You can either choose to continue to wallow in that dark abyss, or you can take a leap of faith and say, ‘screw it’!  You accept your child is different.  

Different – not less. 

And that’s ok.  There will be days that you will miss the sense of ‘normalcy’, but also days where you have a wonderful opportunity to enjoy a completely different outlook on life, through the eyes of your child.  An opportunity to be courageous and join a completely different world.

And that is the choice we have made.

We accept Gabriel for the unique, wonderful and different – not less – angel that he is. 

The world should too.