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.