August 2010 Member Q&A: parentingasdkid (Stephen)

Thanks Elena,

Hello everyone and i hope you enjoy my month's Q&A sessions. So let's get get going.

1. What's your story - how are you involved with autism?

Like a number of parents, i love watching my kids grow, develop and learn. In my case, James was developing in physiological terms but not behavioural, communication or socially. This was in comparison to his younger brother who was following a development line for his age. James was demonstrating unusual patterns of walking, sensory reactions and little speech - i thought he was just testing some boundary or being funny . I hadn't realised he'd been displaying Autism traits. This was over a period of appox. six months. My son at the age of four, was diagnosed with moderate ASD in January 2008

Since 2008 we had referrals, tests, interventions and family support. James is a happy little boy who is happily living his life unaware of his autism. I know one day he will start making his own comparisons and asking questions, quite rightly too.

My own personal involvement has been learning, undersanding and accepting James' autism. Also, I support our local Early Childhood Intervention, becoming involved with other parents and groups for promoting an wareness of Autism in our society.

2. How did you find Talk about Autism and how long have you been with us? (Ha! Guess I've already answered that one, Steve - feel free to expand)

You may have realised from Elena's comments i'm very new here, so new i'm just learning my way around with that new day at school feeling!

I'm a technical communicator which includes Information research, writing and usability testing. I was conducting some research on TreeHouse and found the 'talk about autism' communtiy. I don't normally go on many forums, however Talk about Autism drew my interest and here i'am!

3. What is your top tip to pass on to someone whose child has recently been diagnosed with autism?

I have a number of tips through a number of my experiences. Here are some i used when weaving my Autism maze:

#1 The child in front of you is still your child, don't let their Autism distract your love. As they grow, listen and learn from them.

#2 Don't take any testing questions from your multi-dicpilinary health team personal - they should be acting in you best interest.

#3 Don't have a 'knee jerk' reaction to any diagnosis, restrain yourself from 'Googling' until you have seen your GP. Your efforts are best spent on focusing on registering and applying for Early Childhood Intervention. I'm not saying don't research, but prioritise by focusing on practical support in the first instance.

#4 Document everthing, file all documents carefully into a protfolio. Why? this portfolio will be referred to on every application, consultation and official processess - so prepare! You'll be constantly asked for proof of tests etc. so make life easy by having everything in one place in chronological order .

#5 If you are ready for personal research start with facts from credible resources (Government sites, respected charities).

#6 Be wary of sites selling cures or materials which can cure or reduce symptoms. Most of these are 'Snake oil folk' who peddle their wares on the popularity of Autism alternative cures - buyer beware! Saying that there are legitmate alternate services - just be careful, check acreditation and qualifications of providers.

#8 Educate your family and extended family about autism. Encourage them to become involved. Remember, there may be lifestyle changes depending on the severity of your childs Autism. Having love and support from your family is something funding can't give or speech and OT people can't learn your child.

#9 If your child has regular speech or ocuppational therapy, participate, ask the therapist to help you learn the techniques. This ad hoc training can help when funding has gone or your budget is low.

4. What has been one of the most difficult encounters you've had with regard to autism?

There's been a few - probably dealing with a child pyschologist who wasn't able to connect with James or me is the most prominant.

For example, when testing my son, rather than lowering to his height by kneeling, she kept at her desk like a 1950's school teacher - peering at him. Thinking more, i can still visualise her hair tight in a bun with her glasses making more than a fashion statement - not very approachable. Reminicent of the Baron's child catcher (Robert Helpman) in chitty chitty bang bang, yep pretty scary!

This is why i have tip two in question 2, about not taking anything personal. It took all my strength and calmness for us completing a one visit test in four weeks.

To make matters worse, on receiving the final report i noticed typos and half way through the report James had become another kid, Dave or something. I can laugh now, but then when you knew the report is James' official diagnosis for accessing mainstream Government services, i had a little tension! Fortunately, i kept a cool head and resolves all issues - never to return.

For the record - all our multidicplinary health team have been fantastic, this was an isolated incident. Oops, that does sound like a Press release statement.

5. If you had to describe autism in no more than 3 words, what would they be?

A Translucent Mask

6. This our Summer question: Do you have any Summer holiday suggestions or advice for people with autism?
With a little preparation and local knowledge of the desitnation, Autism shouldn't hold you back from a terrific holiday. I guess this is subjective to the severity of your Autism and the type of holiday you wish to take. For example, a sensory issue with squeaky noise may rule out types of snow, therefore skiing.

If you are unsure of possible sensory issues or know you may have a few serious ones - Try taking mini breaks before planning a large holiday. This may help with unstanding what suits you in a cost effective way. Also minibreaks gives you a chance to take different friends, so enabling you to find the best person for your big trip.

Btw- If anyone needs info about Aus, let me know - before moving down here form the UK, i did a lot of travelling in a 1983 Mitsubishi sigma each year for three months between 1998 and 2006 with Tracy (who i married in 2001). I should (hopefully) be able to give some pointers.

Just for fun

I always worry when i see "just for fun" lol, i've just seen the questions - oooer look a bit difficult. So here goes.

1. What would your dream holiday be?
I have two, one with my family and one with a friend who is trying to get me going trekking in nepal. The family holiday would be for the kids, meaning all of us, lol. Big brash and fun - so probably disneyland in the US or Australia's goldcoast for seaworld, movieworld and waterparks.

As for me to travel a famous route by a historical explorer or visit the 8 wonder of the world!

2. If you got stranded on a desert island, what 3 things would you take?

A frizbee - is it a plate or a flying game?

A swiss army knife (red one) - always facinated by the quality of design. Especially the philips screw driver which can out last most other diy centre bought screw drivers. Also the philips seems to be designed for fitting perfectly screws on kids toy's battery compartments. The tools are useful, although i've tried chopping a tree down with a 3 inch saw.

A large sack of rice - as seen on masterchef - goes with most sea food!

3. Tell us about something that you really enjoy doing.
Apart from answering these questions! I suppose living in Australia, immersing myself in a beautiful country with such a diverse culture. Geographically, i always see australia, as countries within a country. We have the tropics, the alps, the desert - so different, but interesting. The flora and forna is amazing, set in such a beautiful backdrop of colour. The cities are vibrant and rich with many activities for all.

Finally - thanks for reading my answers, i hope you find them useful. Please feel free to comment.

Steve, really enjoyed reading that!

Ann - Community Champion (who's on the autism spectrum herself)

Hi Amberlight,

Thanks for your comment, i'm glad people are reading my Q&A.

Hi,
What are your issues with PECS ??
We fell out with Alistairs NHS SALT on several occassions over PECS.
Leanne - Community Champion

Hi Leanne,

I read your comment about your son modifying and initiating sentences - brilliant! You may also find he starts using some of your phrases (now you'll have to be careful if he's in ear shot). James is a repeater, but also stores some of my phrases and uses them in similar situations, especially ones which are over emphasising, "oh dear", "Oh no" and even "i need a little help here".

If you don't mind me asking - How old is Alistair?

It sounds like he is at the point naturally opting for words which suit the situation, which is good. he seems very logical, take stone stop, door, this is good example of him picking his words in order. He could of said the door, stop stone or stop stone door which conjures completely different scenarios.

I'm in a fortunate position, as my younger son (4) speaks fluently with emotion, joking and deception (oh yes!) giving me a comparison measurement on James progress. In the above scenario Thomas typically would of said "i can't open the door, who's put this stone here, it's in the way! Oh - I'll have to move it". James would be more similar to Alistair, labelling each object and putting in order.

On a funnier note Thomas has been moving into word morphing since James started toileting (about six months ago). "Pootastic" and "i need my poo -ups" on. The "pootastic" happend just after james successfully used the toilet for a poo, for the record i said fantastic James! Where Thom morphed to "thats pootastic James"!. Sometimes i think James logical straight forward words are best :)