March 2010 Member Q&A: Matt Joyce

Good afternoon one and all, here are the answers to the questions, ifyou have any others please feel free to ask anything.

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

My son Robert was diagnosed with ASD last year aged 3, well just before actually.  He is high functioning and it is just his social skills that are not quite there.  He has a twin sister Charlotte but she is fine.  I am new to Autism but have read a great deal and got lots of advice from various sources and am ready to fight for whatever is needed to get him the best help and support.  I get involved with his pre-school and forums like this so I know what is going on.  Like everyone else who finds out their child has Autism or anything different (not wrong) you worry a lot, about the future, the help you need, if you can cope etc.  Of course it is a struggle at times and some days you just not sure if you can cope but there is so much help out there it makes things a bit easier.

2. How did you find talk about autism and how long have you been with us?

I came across this site after being told about it by the paediatrician and a quick google search.  I have been a member about 6 months now but have asked many questions, which have always been answered, they do know there stuff here.

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

I have many, here are 3 that I have found useful
    a) choose your battles – It does’t matter if your child wants a blue spoon or red, or they want one shoe  on first etc, let them live in their own way, keeps them happy and more importantly keeps you happy.
    b) Ask for help – Never be afraid to ask for help when things get tough or you need advice.
    c) Trust your instincts – You are the parent and sometimes you know what is best for your child.  You will get told to do this and do that etc but do what you feel is right.
   

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

For me it is control in a public place due to public reaction.  Sometimes Robert will just go in to a paddy (for want of a better phrase) for no reason, you can see people’s reaction of “oh it is another naughty child” and that I find difficult.  My wife saw a T-shirt on a child last week which said “I am not naughty I am autistic”, quite apt I thought.

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

Difficult one this, determined, distant, unaware.   

And just for fun:

1. What would your dream holiday be?

Greek Island, beautiful sunshine, sea, quiet beach and of course Nicole Kidman by my side.

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

A solar DAB radio, a lighter and Nicole Kidman

3. Tell us something that you really enjoy doing.   

A passion I have is genealogy, I have be tracing my family tree for about 5 years now and got back to the 1600’s on some lines.  I have even created a website with all the details of my family on it, www.mjoyce.org.  I would love to spend more time on it but since the twins time is limited now but perhaps when they get older I will get in to it a bit more.

Well that is me, hope to hear from you all soon.

Regards

Matt

Elena

Good question overall it is better that charlotte is there, especially at pre-school, he does look her out if things are getting tough etc.  HOwever maybe he relies on her i am not too sure, he does miss her when she is not about though so we encourage them to be close.  Charlotte is very protective over him, she alwsy makes sure he is ok etc.  Saying they are at the age now where they fight a bit (3) and Robert does tend to go a bit OTT.  As for Charlotte knowing, she does understand he is different but is not too fussed, e.g. she knows he is not yet toilet trained but does not care, she can be a bit jelous if we give him attention etc.  Twins is a good thing b ut does make life more difficult, when he is on his own he is quite easy to looking after, together, phew no wonder i have greying hair now.

Matt 

Tracy

No, she is a bit fussy and at times a right madam, 3 going on 15 at times.  She is bright and very sharp but luckily all ok so far.

Actually i guess i could post up a couple of pics of them, can I do that ? 

Hi Elena

Apologies for the late reply, i did not realise I had a question outstanding, i must have not read my e-mails propely.

Anyway to answer you...

1. I have not found any trace of autism within the family, my wife does have relatives with learning issues and some that are a bit "odd" but that is it really,  I do wonder whee it came from or is just one of those tngs.

2. Robert loves his pre school, sadly he only goes 3 mornings a week (due to limited places).  We are trying to get him some more days as he has done so much better since he started.  He gets a SENCO support teacher for 2 days a week (funded) which is really good and helps him out.  He fits in ok although does not do all the same things, he tends to just go from activity to activity but is learning slowly, he is a lot brighter than others there in terms of numbers, letters, shapes and colours, he knows his alphabet etc but that is probably more his memory.  We did think about sending him to a specialist pre school for 2 days a week (Woodlands I think it is called) but were advised he would not suit it thee, he would be left alone as he is not that severe (not sure if that is the right term). I think he will learn much more from “normal school” that a specialist school but it is too early to tell if which he will end up going to,  it is just following social order that he finds tricky.  As for his support it is totally brilliant, has been from day one, they spotted it and have been working with us at every stage to get him the right help, top marks for Beresford Pre School.  Ps I am also a committee member now too so get involved in how the pre-school is run etc (well sort of).

3. So far no, in fact been the opposite, got assessment,funding, DLA, help at school very easily.  There is a Daisy programme which we have been advised to go to however hey do not have fasciitis forchildren, so what do they expect parents to do, extra tricky for us as twins.  I know that a lot of the battles are yet to come but I am well armed now and know how to get things,well so far anyway.

Hope that is of some help, anymore questions please ask away, anything goes

Matt