My Journey 2011-2013

I could never understand why people that suspect they have HIV didn’t get themselves tested. In fact I still don’t understand why. Is it the fear of reality, the comfort of denial? Surely knowing is better than not knowing?  What if it was your child? You suspect they might be ill or in need of treatment, but do nothing to get them diagnosed. Wouldn’t that constitute child neglect?

If people close to you raise concerns that your child shows signs of diabetes, would you not have them tested for diabetes? Of course you would! It is a medical condition and lack of treatment could have dire consequences. So why, for the love of all things precious in this world, are parents reluctant to have their children diagnosed for Autism Spectrum Disorder? If your child exhibits behaviour that is different for a child of his/her age group, why not eliminate the possibility of Autism and move on? Oh, that right, there might be a chance that the child is Autistic and we prefer not to deal with that reality.

We all want the best for our kids, we want them to do well in school, play competitive sports and have lots of friends. We want people to like our children, because they are a reflection of us as parents. So what happens when little Johnny is disruptive, doesn’t want to listen, runs and shouts and screams like a wild animal? Children avoid him because he hits, bites and pulls their hair. When a trip to the grocery store ends in embarrassment because your child can’t behave himself?  What happens when speech therapy doesn’t help his delayed speech and when you struggle to find a playschool, swimming school or sports club that is prepared to accommodate your “busy” little boy? What then?

I am a mother of the most beautiful, almost angelic little boy. He truly is the most special little thing in my life. His skin is soft like a new born baby and his breath smells like apricots. When I think about him my heart swells and my eyes fill with tears, I just love this little boy so much. His name is Ben and in May 2011 he was diagnosed with Autism Spectrum Disorder. I was gutted! How is it possible? This beautiful little angel is perfect to me and now I have to face the hard cold fact that he has a neurological development disorder. One for which there is no cure. My dreams were shattered and I was angry. I already sacrificed my oldest son’s dreams due to ADHD and now little Ben as well. We decided to get a second opinion, this time a true expert. The diagnosis was the same.

And so the journey started. I can get all scientific about ASD, but for the purpose of this essay I would rather explain what Autism looks like through my own experience.

As a baby Ben responded well to deep pressure. When he battled to sleep I would place a hand on his back and one on his tummy and hold him firmly for a few minutes. He would relax immediately and sleep peacefully. His motor skills were fine and he crawled, walked and held things like a child his age should. He loved stacking and balancing things, blocks, fruit, and toys. He loved TV and was fascinated by trains and dinosaurs. The train fascination crew more pertinent and was obsessed with lining the trains up behind one another. Mother and child classes were a nightmare. Ben wouldn’t co-operate and hated going due to the restrictions to his will. We gave it up for a bad job and decided to look for a play school. Before he turned 3 he was rejected by two playschools, one swimming school and a junior rugby club. My feelings were hurt, but I kept on telling myself that these people just didn’t know how to work with a busy child.

After his 3^rd birthday I was blatantly aware of his delayed speech development, he didn’t speak at all and the few word he did say was in English and we are Afrikaans.  I had his hearing tested, which was fine and he started speech therapy. The therapy was a joke, Ben had his own agenda and not interested in what the therapist had in mind. After 3 months I decided that we were wasting our time and started researching ways of helping my late-talker (as they are known). Most of the information I came across referred to speech delay being a prominent symptom of Autism Spectrum Disorder. I shrugged it off, because clearly Ben wasn’t Autistic.

In March 2011 I went on holiday with my best friend to New York. It was a birthday present from me to me! We stayed in Time Square amidst the hustle and bustle of the most vibrant city on earth. The first shop I walked into was Toys R Us Time Square. At the entrance was a massive poster, about 5 meters high. The picture of the most beautiful little boy, soft brown curly hair and big dark eyes. The slogan at the bottom read: THE FACE OF AUTISM: Autism Awareness Month. I realised that what I thought Autism was, was not what I saw on the picture and I decided to have Ben tested the minute I got home.

By this time we were lucky enough to finally have found a playschool where our little boy was happy. The people at Kabouterplaas were amazing and caring and left Ben to do things on his terms. He could play were he wanted and join whichever class he wanted, when he wanted. He was very happy and content. After discovering what ASD is and how little Ben’s brain worked we realised that this exact environment where he seemed the happiest was the most dangerous to him. 

Let me explain: An Autistic brain is one that cannot learn through intuition, but through instruction. The brain has very limited flexibility and the more rigid the environment the more content and closed to learning the brain is. An autistic brain needs to be challenged to improve the flexibility in order for it to learn. It is this challenge that initiates the disruptive behaviour; it is an attempt to be left in its own world. The more you leave an Autistic child, the more rigid he/she will become. The more you encourage an Autistic child to challenge his/her brain, the more flexible and adaptive the brain becomes.  

It’s a very difficult and hard process, but with the right behavioural therapies and a good understanding and respect for Autism, challenging behaviour can radically be reduced.  

Challenging behaviour often stand in the way of the child's ability to learn and form relationships, this is my only motivation for helping my son with more appropriate behaviour. I respect that Autism is part of his identity and that I have to help him navigate a world that was not made for him.

Who's your Mamma!

With Mothers day fast approaching I decided to spare the men and inadvertently all the mothers out there, a hell of a lot of fake smiling and guilt-ridden disappointment! Gift giving is hard, with all the pretending that we do...trying not to come across as materialistic or superficial, we end up smiling at the hand painted spoon holder your 4 year old made, wishing it was a voucher for a day-spa.

Pay attention guys, this is for you:  First of all, it's not really "mothers day" now is it? Little Johny has no clue that this is the day that mom should be lavished with gifts, love and spoilt till her toes curl. This is a burden totally bestowed upon YOU! Unfair as it may be, if you play your cards right, you could be forgiven for basically any chauvinistic slip-up for the remainder of the year.

Your wife thinks she was the first woman to EVER bear a child. Her pregnancy was a nightmare and labour...lets not even go there. Then there is the constant reminders of how she loves Little Johny more than life itself and wouldn't swap motherhood for anything in the world BUT how much she misses her figure, job, girlfriends and all the wonderful Cosmopolitan approved girl stuff she's missing out on. If the kids are still under 3 years old, you might still have to contend with sleepless nights, hormones and according to the cover of this weeks Time Magazine...breastfeeding. Seriously, if your kid can read and write its time to stop sucking mommy's tittie!

Alright, here it is:
1) Do your recon! Gather information in advance. About a month should do. Despite woman SAYING they love surprises, they DON'T! Start making a list of things your wife loves....NOT like or need!
2) Get the specifics right. If she loves a blue scarf from Queenspark, for gods sake, don't buy the red one from Edgars.
3) Learn to read body language and facial expressions! "wow" said in a low tone with mouth still agape after 3 seconds after the sound came out, eyes widened....not a good sign!
4) Phone a friend:  Ask her friends, sister, even the domestic worker knows your wife better than you! There's no shame in asking for help! The focus is to get it RIGHT!
5) Steer clear of gift certificates! Woman hate men that cannot make an effort!
6) For those of you that are still dazed and confused: here's a list of top ten favourites
6.1 Expensive Perfume, but only buy what you know she loves! Ref to point 1
6.2 Framed photographs of the kids (this one will even get u laid)
6.3 Earrings (jewellery is too vague...you will never get it right)
6.4 Roses! Not a selection of blooms, lilies or a pot plant! ROSES!
6.5 A day at the spa! Calm down, this does not classify as a voucher!
6.6 Scarfs. This is for your more advanced husband. At least 8 years of marriage required. Refer to point 4...phone a friend
6.7 Crabtree & Evelyn. If you don't know what it is, neither will your wife...so just never mind!
6.8 Sunday lunch at a wine estate that caters for kids. Unimaginative, but still appreciated.
6.9 Anything that starts with an i ... iPhone, iPad, iPod
6.10 A weekend away with-out the kids and you! The greatest Mothers-Day gift is to "not being a mother" for a day or two. It seems contradictory, but it really is about your wife remembering that she is also a woman, not just a wife and mom.

Now remember what I said: this day can make or break you. I suggest you get off the Internet and get cracking! Personal note: I would like to distance myself from any spelling errors. This was typed on my iPad and I couldn't find the spell check! Hey... Nobody's perfect! Happy Wife Day !

What's wrong with Jack?

April being World Autism Awareness Month, I decided to organise a few initiatives at the local schools and community. On the 17th April we will host an "Autism for Dummies" information evening at the local Primary School hall. I have written a children's book to help explain Autism to smaller children. My 7 year old daughter still struggles to come to terms with her brothers being on the Autism Spectrum. What's wrong with Jack? tries to explain that you cannot see Autism and that tolerance is key to understanding and dealing with it.

 

 

Beach house

Having a demanding family makes simple things like going on holiday together, complicated. The last time I was on holiday with all three my kids were 4 years ago, when Ben was still a baby.

It was the worst two weeks of my life and when I got home, I broke down in tears and vowed to never take all three kids on holiday again.

A few months ago an incredible opportunity presented itself to buy a little home by the sea. It's a two hour drive from our home and it is perfect. Our family has a threshold for long distance driving, which peaks at about two hours. Anything longer than that and you are risking family murder. I think I referred to the situation in more detail in an earlier post regarding "roadtrips".

The house is simple and on a quiet cul de sac, overlooking an estuary. It's fenced and gated, an absolute must for my little 4 year old that often gets Forrest Gump urges and just wants to take off and run! It's close to the beach and very low maintanance. It has a neighbour with a fabulous black labrador, named Max. Max is awesome, he lives and eats next door, but he always greets us with a wagging tail when we get home. The kids play with him like he belongs to them and he even barks at stangers passing our perimeter. It's like having a holiday pet without all the responsibility. My kinda dog.

Needless to say, we bought it and since Jan we have spend every second weekend at our little getaway. Then our first school holiday approached...we have some renovations at our permanent home and thought it a good idea for me and the kids to go spend a week at the beach house and escape the mess and disruption. Great idea!

The week is over and we have to head home tomorrow. It was amazing. The kids were angels and we all had a really chilled holiday. We flew kites, played board games, spend hours on the beach and park and even went boating on the lagoon. Nobody fought and despite very intimate living conditions, everybody got on just fine.
We did arts and crafts, took a trip to a nearby town for some kiddies playfun and I even had a fantastic massage.

It has taken me four years to pluck up the courage to take the kids away on holiday and it was a huge success. There are of course the little silent helpers like prescription meds and a year of behavioural therapy. What I have learned this week is that we too can do things normal families do. With a little planning and a little creativity, (like buying a holiday house) we too can make some fond memories of holidays spend lazing and just kicking back!

What is Autism? Being different doesn't mean being inferior!

What's the difference?

Mom...It's me Aiden!

The blog, Dreams, was written a years ago. At the time we were still under the impression that our son has Attention Deficit Disorder. In May 2011 our then 3 year old was diagnosed with Autism. Becoming familiar with the subject we soon discovered many red flags concerning our eldest son. We had him assessed and at 17 our son was diagnosed with Aspergers.
Being diagnosed on the spectrum changed my relationship with my first born. For the first time in 17 years I understood. I could let go of all the guilt and anger towards him and just love him.  I understood all the enigmas that always surrounded him and I could start the long and slow journey of getting to know a son that was living in my care for all these years, but whom I never really saw.

Dreams…
 
All I ever wanted was for my kids were to be smart. The looks weren't that important, but
they had to be intelligent. I was young and single when my first son was born, and very
ignorant to the realities of raising a child. 
After two weeks of breastfeeding the poor child was malnourished and weighed less than at birth.
We switched to formula and he was OK. By 18 months I noticed his inability to hold his bottle and 
shrugged it off, thinking that he's probably a little spoilt. At age two his speech was delayed and 
understanding him was nearly impossible. An assessment pointed out that he had low muscle tone, 
which could be improved with occupational therapy and speech therapy. Not being able to suckle
 properly, his little hands not holding his bottle and his poor speech was all due to this muscle tone
 problem that I was now addressing. So I thought. 

In grade R an assessor at his preschool felt that he was not yet developmentally  prepared for 
school, and recommended an intense O.T. program to assist him before the completion of his 
preschool year. I wasn't concerned, because I new the origin of his problem, the low muscle tone 
was the culprit. He had poor pencil grip and poor speech, which O.T. was going to sort out. 

At the end of grade 1, his teacher requested a meeting with the headmaster. She felt that our
 son was not achieving the required goals as set out for his grade and identified symptoms of 
Attention Deficit Disorder. It was briefly explained as hyperactivity causing an inability to focus. 
The headmaster comforted us by recommending a more "technical" field, where he could 
work with his hands. He added that there are a few alternative schooling options as well. 
Tafelberg, which is a school that caters for a number of disorders, including severe mental
retardation, was suggested.  I was furious. Herman couldn't believe the audacity these people had. 
Forming an opinion based on no assessment, no specialist input and recommending "he go work 
with his hands". We were insulted and angry. 

My dream of having a smart kid that would excel at academics, receive certificates and book prizes, were shattered... And so our journey began. The first thing that struck me was the inability of
doctors and therapist to diagnose Attention Deficit Disorder. Every single person that we saw, every single assessment and test was met with the same inconclusive, wishy washy diagnosis.
The child shows signs of difficulty with concentration and focus. His reading and writing skills 
are below the required level for his age…blah blah blah. NOBODY wanted to say: Your son has ADD! It was the most frustrating obstacle we faced. The second problem that completely did my head in was the lack of knowledge teachers and educators had about a disorder, that according to statistics were  affecting 10% of   learners. That meant that in a class of 30,  roughly 3 children possibly are candidates for ADD.  

We decided to hold back on the medication for as long as possible, or at least until he was older. 
At 13 he went on prescription medication, which made a world of  difference. BUT it changed him! I 
am pro-medication, for goodness sake if you have  diabetes, you WILL  take insulin. Why would you 
not take medication that can help you?  Here’s why: 
ON MEDS: my son is better able to manage his thoughts and impulses. He is sullen and not very
talkative. He appears disinterested and not motivated by anything, he  never gets excited about 
anything. He is short tempered and very irritable. He cannot stand his sibling sister.
OFF MEDS: my son is under my feet all the time, he is chatty and funny. He cannot focus on 
anything and talks about the most irrelevant nonsense imaginable. He is silly and friendly and plays
with his siblings, without any hassles. 
The choice is not that obvious any more!

The mom of an ADD  child told me the other day: I don’t know who my real daughter is. Is it the disorder  that makes her this care free little girl that has funny quirks and amuses us,or is it the
serious,quiet child whose disorder symptoms are calmed by medication? We all want our children to 
be the best they  can be, to find their true self. But who is the true Aiden and am I helping him to be 
who he is?  Our son is 16 this year. He has no friends, he never goes out, and he plays no sport 
and has no extramural activities that interest him long enough, to become  good at. On a Saturday 
night he went to a braai with his parents and the hostess was shocked that he wasn’t out partying 
with his friends. Other people have to constantly tell me how wonderful my son is and it saddens 
me every day that other people have to  point it out. 

He goes to mainstream school and has managed to do so without too many issues. I 
often wonder if he is happy and has asked him on many occasions. He says yes, but I’m 
never entirely convinced.