(ASD)Hello, new on here & a quick question...

[caitielo]

Hi,
My name is Caitlyn and I have a young boy who has ASD, we got a diagnosis last year when he was 2 and a half. Since then he seems to be progressing really well, though he is still non-verbal. Communication is becoming better though and lately he is always making attempts to "tell" me things using signs and gestures and pecs too.
Just wanted to quickly introduce myself a bit, hopefully make some friends on here.

I am studying media at the moment, and believe it or not there is a part in it about communication disorders (I was shocked anyway) We have been given an assignment to create a report (in any media format) on a topic related to a communication disorder. Naturally, I've chosed autism! I'm hoping to do something, probably a staged radio broadcast or perhaps a presentation to show what/who parent's of children with autism actually are - real. Good mothers nonetheless, but still the mother next door. So...
Would anyone share with me a few things about yourself, your personality, aside from parent of a child with autism. Anything I use will be totally anonymous and I could make it up, but would really like to get it right.

ME:

Creative
Loyal
Self-Conscious
Helpful
Book Fiend

Sorry if this is confusing, it is late but I was on a brainwave! Or if it's too personal to share... I understand that.

www.mumsnet.com/Talk/special_needs/895654-the-famous-Moondog-quot-calendar-quot-post-re-teaching-tim e

You might find some interesting things here, or just search for threads where people have asked questions about a particular communication difficulty and people have given ideas of things they have tried.

If I was doing the project I might chose to investigate the way parents work very very hard to find creative ways to help teach their children concepts that NT children pick up easily.

Welcome to MN and good luck with your project.

I am a mum to an autistic boy and would describe myself as determined. Actually I was pretty determined before having my children also, but having an SEN child has made me doubly so. I am determined to fight the LEA to get a decent education for my boy, to fight the low expectations of an autistic child (eg that he would never read or write - he is doing both!), and actually to fight the autism itself as it tries to deny my child the pleasures that "normal" kids take for granted - a trip to the swimming pool, a trip to a pizza restaurant, a ride on a bike, a party game in the sea etc. It annoys me when people think his autism means he can't do something - I look for a way he can, and only give up when I meet a huge roadblock. Hth

sorry, I meant to type surfing in the sea!

"If I was doing the project I might chose to investigate the way parents work very very hard to find creative ways to help teach their children concepts that NT children pick up easily."

Hi,

Thank you. I'm not too sure whether I'd be able to do it or not, we've only got 5 minutes or less to make the biggest impact. Though I suppose I could just use clips of some examples of this... Not sure whether you could clearly show even one example of teaching a child with autism how to do something NT children pick up normally, in 5 minutes though? Especially without it seeming all doom and gloom... which isn't the message I want to get across. DS takes a long time to pick things up, and it takes us very many attempts at different strategies before finding something that clicks. Unless of course it's working out how to take something apart or work something electrical.

Thanks for the tip though, definitely something to think on through the day (in between easter eggs of course!) Happy Easter!

Sorry sick of, wasn't ignoring you, your response wasn't there when I began mine. Thanks for the input, it's always interesting to hear other people's opinions and views on things and I'm sure determination would be a lot of our top qualities.
Do you mind me asking, when you say a decent education, how do you mean? Do you feel that his needs are not being met at the moment, or is your son in a setting you don't necessarily want him in, but can't get out?
Sorry for being nosey, it's just something I often think about - the Education system - and think it's ridiculous, all the red tape and stupidity there is to go through to get our kids where we want them (we do usually know best afterall.)

Thanks.

both of my children have Autism, as do my niece and nephew (have a look at my shopping channel thread in chat!!)

'We are the same as any other family, we just do it differntly'

That has become my mantra, I can still remember waving my arms around and making silly expressions in ds face when he was sat in his pushchair to get a reaction.

I got some funny looks but who cares, it meant that he stopped humming or tapping or whatever for a second and became a part of ME and my world and on a good day would even look at the bird/cat or whatever. After a long hard slog he is for the main part is fully responsive.

He will always have a lot of problems but IS progressing, and for that I am grateful.

But above all, they are my children, and for that reason they are loved.

My view, and it's a personal one and specific to the area I live in, is that lot of so-called autistic "special" schools expect way too little of autistic kids. The worst of them seem to me to be just glorified child-minding with a bit of PECs thrown in. A lot of the progress made in such schools would be just due to the kid maturing. I find that an intensive approach, like the ABA which we use, demands and gets a lot more out of the autistic child. The TEACCH approach, which is the norm in our autistic state schools, is often only effective for the higher functioning autistic kids, who learn quickly whatever the methodology. That's what I meant by decent education - good luck with your talk!

Yes. If we're voting I'd like to see something challenging the low expectations in general of autism. Nearly all parents have to deal with professionals who tell them that the prognosis for the child is very poor when what the professionals really mean, is that provision is poor. Most of them believe the former, but the ones who don't are too scared to tell parents that with a huge amount of THEIR own effort and resources their children have a much better chance because that will be them admitting that their offer is a)poor b)challengable which they wouldn't be able to survive themselves psychologically or workload-wise.

Hear hear!

I do agree with your comments, though my experience within the education system is very limited (at the moment). I do know that a lot of schools, not even just the special ones, which we have visited (and 2 pre-schools DS was in last year) are either completely unaware of autism and what is is really all about - personally, I find that ridiculous, the awareness for the condition is awful considering that it's not really that uncommon anymore; say they are unable to accommodate the child due to funding; say they are experienced in autism spectrum disorders when what they actually mean is they'll take them but they will ignore the child and leave them to "get on with it" - this is one of the experiences we went through last year, DS was allowed to sit screaming in a corner, clawing at his own face. I wasn't contacted to come collect him, or even informed, I went to collect him twenty minutes earlier than expected so was able to see for myself how it really is.

Thankfully at the moment we are getting excellent support, in a great (little) setting, and the nursery manger who is also SENCO has a very good, positive outlook on how to deal with autism, well any special needs. If it continues through primary too, their stance and their provision, then we will be good to go for a while.

sick of, with the ABA do you use it (the techniques) for specific things, for example what you feel your son is needing to advance at the most at that present moment or go you use a therapy/centre with a structured regime/programme?

SwissCheese, I love that. That's really what I wanted to get across - That the mothers and fathers of these children are just... they're real, human people. And while we do all work REALLY hard and we do have to have the patience of a saint at times we are still just as much a regular human (outside of autism) as the next one.
Do you know what I mean? I'm not sure how to phrase it... But that is what I was hoping for, just general attributes, attitudes, likes and hang-ups from different voices (possibly faces) then, at the end, a collaberative "mother of a child with autism"... ???

Cautelo - my boy does part-time home ABA with tutors, and part-time at mainstream school with ABA-trained tutors. It's a way of teaching really - using the kid's own motivation to get speech and good behaviour (eg teach him to say Choc, if he wants chocolate, or reward him for good work) and discouraging the bad or stimmy behaviours. It is also a very small-step teaching approach, as I agree with Smack that teaching an autistic child takes more patience and endless practice than most professionals have the time or inclination to realise/do.

"as I agree with Smack that teaching an autistic child takes more patience and endless practice than most professionals have the time or inclination to realise/do."

Definitely agree with you there. It's sad, but true. Which is why I am so grateful that things seem to be going smoothly for us right now... if anything went wrong (i.e. some reason DS wouldn't get into the school attached, or the school's provisions and beliefs were different to the pre-school's) then I really don't know where that would leave us.

Yes I agree. Mothers with children with autism are no different to most other mothers. There is something fierce in a mother's instinct to protect her child that is not specific to having autism in the family, but is possibly demonstrated by it.

What is verging on criminal, is a system that is set up to work against that instinct, to cause self-doubt, increase helplessness, remove hope and isolate under the disguise of 'support' and 'help' which in the best case is rarely anything of the sort, and in the worst case reaffirmation of hopelessness.

Sorry for delay in response, have had no internet access! OH NO!

Yes, you sum up exactly my feelings. I am clueless as to what we're going to do about schooling, the more I read, the more I am deterred from mainstream. Which is ridiculous as DS is extremely intelligent and with a full time 1-1, he would, academically, do so well. Unfortunately it seems that we are not going to get that, not for a long while anyway, which leaves me in the predicament, if he starts to show signs of regression do I wait, as they expect me to, or do I follow my instincts?

Constantly feel like I am being controlled, or people are tryingto control me.

While I have access to the internet (and without it, I wouldn't know what I know) Numerous others from the child development centre who know abosolutely nothing to what they are entitled to, what to expect when it comes to school, what an IEP is... they are told NOTHING. How is this fair?! The whole system is screwed.

I meant: Whil I have access to the internet (and without it, I wouldn't know what I do know) Numerous other parents from the child development centre do not, and know absolutely nothing about what they are entitled to, what to expect with schooling, what an IEP is, what their rights are... they are told NOTHING. How is this fair?! The whole system is screwed.