Support Vital Dealing With Autism

Opinion, The Nelson Mail 21 April 2011
Autism New Zealand runs a regular coffee group which is a form of therapy for this mother of a six year old daughter with autism spectrum disorder.

Support Vital Dealing With Autism

My six year old daughter has been invited to a birthday party. Typical in childhood? Not for my daughter, because she is autistic.

Previous birthday party invitations occurred because I knew the families and friendships have been carefully nurtured between my daughter and a couple of children.

So I just about shed a tear when my daughter was invited to a birthday party recently by a girl in her class as I had nothing to do with it. Ok truth be told; I wanted to jump for joy! It is a celebratory milestone around my daughter’s social development as she has struggled socially for most of her short life.

Although my daughter was born healthy, in her toddler years some differences became apparent. The older she got the more obvious those differences became. She was disinterested in other children and was non-verbal until the age of three. She communicated through her behaviour which sometimes was inappropriate and was typically misunderstood.

From the outside it was easy to write it off as bad behaviour. But underneath it all was a child who was overwhelmed socially, suffered from high anxiety and could only handle small doses of exposure to situations that were either noisy or unstructured.

Her undesirable behaviour limited our social interactions at a time when most children’s social worlds are expanding. When she was three and a half years old she was diagnosed with ASD – autism spectrum disorder.

At the time of receiving this diagnosis, I was given a booklet about Autism New Zealand, an incorporated society with charitable status. The booklet contained valuable information such as which services to go in the Nelson region for support and assistance as well as information about coffee group meetings that provide links to other families in Nelson/Marlborough with children and teenagers with autism.

I first started attending the local Autism New Zealand coffee group meetings three years ago. It was the coffee group I knew I belonged to as up to then my experiences of motherhood were significantly different to mothers of neurotypical” children. My daughter didn’t reach many of the milestones dictated by parenting books out there. She didn’t sleep through the night until she was five years old. The beginnings of toilet-training were also significantly later and are still a work in progress.

Other children would play alongside each other as toddlers; my daughter would be off exploring the environment or would be fixated on a gadget. It has been incredibly reassuring being able to connect with parents – mainly Mums - who share many of the same challenges as I do.

We might only see each other at coffee group meetings every six weeks but touching base regularly is such an important, if not therapeutic, part of life with a child on the autistic spectrum. Our children are all different ages, and although they all have autism – no two children with autism are the same.

The coffee meetings are a great opportunity to update each other on our children’s progress, to vent if needed and to just meet up with parents who may be living with the same or similar challenges. There is also a lot of information on hand in the form of workshops and seminars which we are lucky to get in our region. Although one child in every hundred is diagnosed with autism, misunderstandings and a lack of knowledge prevail.

A lot of the time autism is stereotyped yet with autism there is no one size fits all. Classic autism is what often springs to mind when autism is mentioned. There is a fascination with it on the big screen, tele and in books - the autism where an individual is seemingly locked in his or her own world, while rocking in a corner. Movies such as Rain Man and television programmes such as The Big Bang Theory feature characters with Aspergers Syndrome – the kind of autism where intelligent but socially quirky individuals reside. These are two examples of autism but there are many different variations in between.

My daughter’s autism can be described as “high functioning”. She didn’t make the diagnosis for Aspergers Syndrome because her onset of speech was delayed. Being a girl puts her in the minority even within the autism arena as typically it is boys that are diagnosed. Although she is challenged socially, she is naturally social yet many think that autistic children aren’t social beings.

Other struggles are to do with sensory processing (she gets tired and overstimulated easily) and managing emotions (she rarely cries). She tends to internalise her emotions so it often appears as if she is doing just fine.

Living with a child with a high functioning autism is a little like living with Jekyll and Hyde. Jekyll participates fairly well in class, progresses academically and is even beginning to make friends during her second year at school. Hyde comes home most days from school jaded, retreats into herself for an hour or two, and can have explosive meltdowns.

Her autism seems to go in cycles. She can have weeks or months of “doing well” – or at least holding it together in the neurotypical world. Then she regresses back to her first language – autism.

During the last three years there has been a team of specialists on board to help with behavioural issues and to ensure mainstream education works. As grateful as I am for the support, it does take a lot of extra time and energy to meet up with all the specialists.

Many strides forward have been made and without a doubt my daughter wouldn’t be doing as well as she is without all the help, but the challenges remain despite the best efforts to manage my daughter’s autism on a day to day basis. Autism is for life and it is important to connect with other families to gain hope and inspiration. That is why an organisation like Autism New Zealand is vital for families such as ours.

In Case Of Emergency

Weekend, The Nelson Mail 15 October 2005
Recent tragic disasters in the news are a reminder of how sudden and unexpected such events can occur - and the necessity to be prepared.

Most of us have the mandatory matches, candles and torch hidden in the bottom drawer in the kitchen somewhere. But what if a natural disaster on the scale of Hurricane Katrina or the Pakistan earthquake should hit?How prepared are we? What exactly should be in an Emergency Survival Kit? Does your family have a meeting place and a contingency plan should an emergency situation occur? These are the kinds of questions that need to be addressed in order to prepare for a natural disaster.

For the last couple of years New Zealand Disaster Reduction Week has been coinciding with UN International Disaster Reduction Day. The key message for Disaster Reduction Week 2005 (October 9-15) that the Ministry of Civil Defence and Emergency Management (MCDEM) would like to come across of preparedness. It's about creating and encouraging resilient communities.

The disaster most likely to occur in Nelson is a flood. Flooding is at the top of the list as far as declared civil defence emergencies in New Zealand go.

Scientists believe that within the next 20 years a major earthquake will occur on the South Island Alpine Fault. Meanwhile other significant natural disasters include snow, wind, landslide, coastal erosion, storm surge and tsunami.

Sarah Holland, the emergency management officer for Civil Defence in the Nelson region, says households need to look closely at their own immediate area. Rural areas should be prepared for a wildfire, for instance.When disaster hits, people and communities are vulnerable not only to its destructive force but also lifeline utilities such as power, water, sewerage, communications and transport systems.

Threats of international terrorism, and the potential release of hazardous substances or organisms means we have a range of natural and manmade hazards that could impact us significantly. Holland stresses that while Civil Defence is here to help, in a disaster the immediate aftermath would undoubtedly mean that resources would be concentrated on restoring essential services. For this reason people should have an emergency survival kit, as they could well face being on their own for a few days.

Holland is concerned that the average Nelson household and business is not prepared for a disaster. It's a case of all talk and often no action.People have to realise, she says, that the days are gone of Civil Defence immediately coming to the rescue."There aren't going to be any knights in shining armour. People need to be prepared." says Holland.

So where should you start?

You can download your household emergency checklist, and household emergency plan, from the Ministry of Civil Defence emergency management web site http://www.civildefence.govt.nz. The front of the yellow pages is also a useful resource.

If you prefer to keep your Emergency Survival Kit items in the house for everyday use, make sure you know where to find them when an emergency occurs.

Your Kit should contain:
* Canned or dried food
* A can opener
* A primus or BBQ to cook on
* Bottled water (3 litres per person per day)
* Check and renew the food and water every 12 months.

Emergency Items
* First Aid Kit and essential medicines
* Spare toilet paper and plastic rubbish bags for your emergency toilet
* Pet supplies
* Waterproof torches and spare batteries
* Radio and spare batteries (check the batteries every three months)

Emergency Clothing
* Wind proof and rainproof
* Sun hats
* Blankets or sleeping bags
* Strong shoes for outdoors
* Supplies for Babies and Small Children
* Food and drink
* Change of clothing
* Favourite toy or activity
* Special Supplies for Those with Disabilities
* Hearing aids
* Mobility aids
* Glasses

Three days of supplies takes a bit of organising and involves some expense.

Holland suggests starting with water. Wash out and then fill up old juice or fizzy drink bottles. If you fill bottles to the brim and store them in a dark place they will keep for 12 months. Holland advises against using old milk bottles.

A sample list of food you would need includes cereal for breakfasts, soup, noodles, tinned tuna or corned beef for lunches, tinned stew or baked beans and tinned fruit for dinner, and muesli bars, peanuts, crackers and chocolate for snacks.

A torch with a spare battery is crucial. Holland recommends that people use chemical lightsticks rather than candles, as they are much safer. Another highly recommended item is a battery-powered radio, with spare batteries in order to keep informed. Holland says you could use a car radio.

KIT HINTS
Some hints about your Disaster Survival Kit
*Put all items, especially the blankets and clothing into plastic bags (leak proof) to keep them dry.
*Keep the Disaster Survival Kit in a place which will be easily accessible in an emergency.
*Make sure everyone in the house can find it in the dark.
*Make someone responsible for checking (and renewing) the food and water every 12 months.

Service With A Grimace, the Nelson Way

Voices, The Nelson Mail, 7 January 2006
Whatever happened to service with a smile?

Nelson gets a hard rap for its customer service. Residents are expected to put up with inferior service because in line with the sunshine hours pay rates way of thinking, you get the feeling that you shouldn't complain when service isn't up to par.

When I asked where my cutlery might be on one occasion, I was given the brush-off, so typical in this town. “It's over there” replies the oh-so casual waiter, clearly far too busy to make an exception to the fetch-yer-own-cutlery policy. Dining alongside breathtaking scenery the fact that you weren't given a fork and a knife with your lunch SHOULD be overlooked, sweetheart. Just get out of your chair and get it yourself.Of course Nelson isn't the only place with bad service.

Recently in Tauranga a friend and I ordered a couple of milkshakes at a café. Hers deviated from the one on the menu - mine was exactly the same. “It would be easier if you had the same milkshakes.” said the I'd-rather-be-somewhere-else waitress. Right. I contemplated that for a second. So I pay $4.50 to have a drink I didn't really want? No way! I delivered my decision back to the waitress. Within minutes she was back with our two differing milkshakes. So what was so hard about that again? Perhaps she should have just said “Actually I can't be arsed making TWO milkshakes. I want to go home and get drunk instead.” Because that is often what lies beneath bad service is it not? The distinct impression that this person serving you would rather be somewhere else.

The woman in the department store in the middle of a gossip session with her colleagues. The dairy owner on the phone who continues to serve you without making eye contact. The taxi driver who drives in total grumpy silence as you sit in the back of the taxi watching your fare escalate. The bar tender who treats you as if you're not good enough for HIS bar. The service desk employee who sighs down the phone as you ask what is obviously a stupid question - for the umpteenth time that day.

I've been on the other side. As a waitress I was hardly known for my silver service techniques. A natural klutz, I was typically hung over, tired, PMSing, in love, out of love, on a sugar high, or on a sugar low. Behind the bar I sometimes mixed up people's drink orders. Telemarketing I worked so hard at “smiling down the phone” my face just about ached by the end of my shift. I too often daydreamed about better days.

I've served grumpy, impatient, unreasonable and just plain rude customers. Some deserved a good slap across the face. Yet I was taught that the customer always comes first. No matter how annoying they are.

It's no picnic working in the service industry. But what happened to service with a smile? These days it's often more like service with a grimace. Of course there is good service out there. But it is a rarity to find the kind of service where you feel valued, that comes with an in built feel-good factor - and has you coming back for more. Smile like you mean it. You never know - one day you might.

Demystifying Childbirth For The Uninitiated

Voices, The Nelson Mail , 17 September 2005
The scary, unknown territory of childbirth that awaits the mum-to-be.

As a first time mum impending childbirth came with a huge question mark. A few months off from my due date I was asked "Has anyone ever told you that it hurts like hell?" Um, yes, I had grasped that much - thanks…

Women birthing on screen tend to pant for a few minutes on a hospital bed, push once and go a bit red. Next the baby slides effortlessly into the doctor's arms. After a few WAAAHS! a somewhat disheveled mum rocks her newborn in her arms, with the obligatory tear in her eye.

In contrast my antenatal class showed videos of women writhing in pain, omitting scary animal-like sounds, and clinging to their support person with clenched fists. Parts of the female anatomy were without a doubt stretched to full capacity. Ouch. It did look like it hurt. A LOT.

With such varying portrayals of childbirth I remained somewhat confused and nervous as to what was ahead for me.

I discovered that mums fell into three categories as far as disclosing their birth experiences went:
1. The Spare No Detail Type - they were bursting at the seams with their labouring tales, sharing frightfully gory details.
2. The I Daren't Speak Up Type - their mouths remained tightly zipped like they daren't utter a word JUST in case the awful truth spilled out.
3. The I'll Just Tell You The Good Bits Type - they shared the warm fuzzy aspects only. The thoughtfully edited version, it was a safe refuge for this mum-to-be.

And just when I'd thought I'd heard it all someone would come out with one of those friend-of-a-friends birth stories that had been exaggerated several times - I hoped.
I read up about the pain relief options. I went to antenatal yoga classes, swam lengths and walked everyday. I even witnessed a friend's drug-free home birth.

Turns out my baby's life was at risk when it was decided I should have an emergency c-section. My baby girl did arrive safely into the world and I remain eternally grateful to all the medical staff who saved the day as such. No amount of preempting can prepare you for the unknown.

Despite how natural and frequent childbirth actually is, it still remains somewhat of a mystery. The birth you expected you'd have (even if you thought you had no expectations - you have them - no matter how small they are), is not the birth you will have. Childbirth rocked my world in more ways than I could have ever imagined. It is the aftermath of childbirth that is often not discussed. Women aren't prepared for the emotional collapse that commonly follows childbirth.
I now understand why women tend to vary so much as far as sharing their accounts of childbirth goes. For some perhaps they never got the chance to debrief after their birthing experience and so talking about it at any given opportunity years down the track is a form of healing. Those who hold their experience close to their hearts may still be dealing with it quietly, in their own way. And the ones who attempt to be PC about it all perhaps don't want to scare mums-to-be from what is one of the most amazing experiences of a woman's life - even if it doesn't go as planned.

Size Doesn't Matter (When You're Up The Duff)

Voices, The Nelson Mail, 8 January 2005
The unsolicited comments that can be fired at the vulnerable pregnant woman exposed.

It is a strange yet wondrous time being pregnant. For the first few months I got to treasure the miracle of a life growing inside me privately because I wasn't showing yet.

Fast forward to six months, and three weeks. My doctor warned me. "When you start showing you will become public property". Too right she was. The world has their eyes on you as you waddle past, with that titled walk that only those "showing" share. Apparently `'just looking" isn't a concept for those on the outer, witnessing the pregnant woman's changing shape.

Sure there are compliments. Some women DO glow and look radiant. But a lot of pregnant women are tired and cranky and uncomfortable - somehow the glow gets lost amongst all that. It seems the next best place to focus on is her shape. Now people - tread carefully here. Remember emotionally a pregnant women is experiencing a state that is not dissimilar to permanent PMS. And you are dealing with WOMEN. Those creatures who whether they care to be honest about it or not have at some point in their lives worried about their figure. So when a woman is pregnant and suffering in this permanent state of PMS - would you, REALLY, think it was wise to comment on this woman's shape? There are a number of no-no comments and actions that the average pregnant woman may find unamusing or even unoriginal. 1."You're huge/big"
2."You've grown since I last saw you"
3."Are you expecting twins?"
4."Are you sure you got your due date right?"
5." You could never tell that such and such was pregnant when SHE was six months."
6."Mimicking a pregnant women waddling
7."Exaggerating how much space is needed for her to get by
8."Patting the bump like it's your pet dog

Number 5 is my favourite. Note - EVERYONE knows some size 8 whippet who barely showed in her pregnancy. So you will get compared to her. Whether you are a curvey size 12 like myself or just simply shaped in your own unique way.

No two pregnant women are the same. Just as we are shaped differently before we are pregnant it doesn't change WHEN pregnant. Why would I suddenly get the figure of Claudia Schiffer when pregnant?! I was curvey to begin with so of course when with child, I will remain curvey!

For the most part I am embracing my ever-changing shape. I LOVE that no two pregnant women look alike. I go to antenatal yoga classes and looking around, I can see the pregnant glow - the beauty in every woman in the class. It is only in these classes that I can forget my own shape as we focus on our yoga moves. Suddenly the pregnant shape becomes irrelevant.

As pregnant women though it has to be remembered that most people are trying to come from a good place with their well-meaning comments and actions. Perhaps they think we like to focus on the fact that we are pregnant as pointing out our changing shape may be the only way they know how to connect with us. So I try to take it with a grain of salt. And I will continue to bite my own tongue around any pregnant women that I know…