Is that a Wolf or a Duck?

This is Charlie Wolf.

You might remember him from this post where he performed another original composition. Charlie; Age 15, is a high school student who lives in California and has been diagnosed with Asperger's Syndrome.
He is a singer/songwriter who plays guitar, accordion, and harmonica. He also designs websites and T-Shirts.
He and his band (and chickenly challenged teacher) were asked to perform to celebrate the opening of a record store, because they are talented musicians.
Not because they are Aspies. I like that.

I also like the Autism Genome Project which is supported by our own Trinity University here in Dublin. There is a link to the Newsletter Here on the IAA webpage.

We first got involved 7 years ago when Boo was barely 4 years old. They filmed him and did a lot of diagnostic stuff. And then took bloods from Me, Boo and Mr Hammie.

On Sunday night, they came back and put me and Mr H through a few vocabulary tests (very competitive we were too) and then took some more head measurements and a bit more blood. We made no promises but as it turned out, Boo happily came downstairs to meet Dr Gallagher and then sat between Mummy and Daddy while we put the "seat belt" on his arm and giggled through having his blood taken. Another 5 tubes to get them through the next few years.

We have a family history of autism so I feel pretty comfortable with the genetic research. And I figure if they can identify a clear genetic marker they can come up with a definitive test and save families a lot of heart ache and uncertainty when it comes to diagnosis.

And I must confess I do love a bit of empirically researched science.

I also took the opportunity to lecture the very lovely Dr on the madness of giving an ambiguous diagnosis like "P.D.D. -N.O.S" which seems to deny parents more services than actually help in anyway.
I realise that it might be easier for some people to hear that their child has a kind of "autism lite" but when it may delay access or even pre-clude eligibility to essential services and supports such as the Carers Allowances and Incapacitated Child Tax Allowance, along with "Classic" Autism services. Then it is just wrong.

If we had anything approaching an prescriptive health or educational response to different versions of autism, then I could see the point.
A little bird told me that even the excellent Tony Attwood disputes the benefits of such a label.

In Australia we would call it a "Claytons" Diagnosis - or "The Autism You're Having when You're not having Autism"
But it is genuinely in the Autistic Spectrum and should be labeled as such.

I have ranted about this before, so I won't bore you again, other than to say that a diagnosis is not a tattoo on your child's head. Assessments can be re-done, outlooks changed; but it all depends on intervention and access to services. The parent needs the ticket to get in the queue to get whatever it takes to secure intervention. Even if that is just a good tax rebate that will pay for private speech therapy. Whatever it takes, parents have to do it.

I have been told off for this but I will repeat it for the sake of getting people to Stand Up For Autism -
If it Looks like a duck, Sounds like a Duck and Smells like a Duck, chances are it is a duck. Don't call it a webbed footed, feathered and billed quacking creature, not otherwise specified.

Call it a feckin' duck and we can get started on securing some services!

xx

Consider this

A view from inside the spectrum:



With thanks to Anne-Marie on Facebook for the link

World Autism Awareness Day Part II

More world and local events to report.

The World Autism Day You tube Channel is up and running and telling you to "Stand up for Autism"

You can take part and Stand up for autism; To upload your short Stand up for Autism video to the WAAD You Tube group, Go here




You could also attend the 'Stand Up for Autism' Rally at Parliament Buildings, Stormont on 31st March 2009 in support of World Autism Awareness Day. For further info please call 028 9040 1729 or email info@autismni.org.

If you can’t attend, you can also forward photos to the email address for their ‘Faces of Autism’ gallery.

And on the local scene-:

The 2nd annual World Autism Awareness Coffee Morning

Will be held in Tullyallen Parish Hall Thursday April 2nd 9.30-12 noon.

Run by Lucy Owens & friends the proceeds go to Drogheda ABACAS School, where Lucy & Pats 2 boys attend ,Luke(9) and joey (3).
This event proved very popular last year with donations at the door, raffle & a fantastic cake sale, raising €5000 for the school. !!!!!
Tullyallen is just 5 miles from Drogheda and Slane, and is just off exit 10 on the M1 motorway. Children are welcome, as there is a colouring area to entertain them while the mammies (daddies, grannies etc...) enjoy some nice coffee & home baking! Go here to RSVP to Lucy on FACEBOOK

And again I ask What are YOU Doing for World Autism Awareness Day?

News News and World Autism Awareness Day Part I

Thursday 2nd April 2009

Only 8 more sleeps until our big day here in Autism World and we are still hastily planning fund and awareness raising events to celebrate.
If you are planning an event and want me to put it up here on the blog then please email me.

Be sure to tune into your Radio, TV and social media outposts like Facebook and Twitter to hear the latest initiatives in Autism Research and Support from around the world, and to contribute Your Opinion.

News from Autism World:
Trinity have published their latest newsletter on the Autism Genome Project and other research they are conducting into the incidence of Autism. Go here to read the newsletter or here to visit their website and learn more.

We have 2 new bloggers on the blog roll -

Duncan an 8 year old autistic boy who lives in Northern Ireland. His speech and understanding of spoken language is very limited and he has great difficulties with other forms of social interaction but he has a passion for imagery and creates imaginative, detailed, humorous and clever images of his favourite characters and scenes. He draws all the pictures on his blog and dictates the text. Check it out here - absolutely brilliant.

And Boo, who you may have heard of once or twice before; ahem has his own blog now. He is 11, very verbal and hyperlexic and can type at the rate of 150 words per minute. I will film him one day and put up a clip to prove it. He kept hi-jacking Hammie's Blog with weird stuff about Gladiators so I have set up his own.
He blogs about film credits and re-casts the films and types scripts. He also thinks he can speak chinese. I apologise to any genuine mandarin or cantonese speakers but I dare you to read this out loud without laughing. Read the full blog here

And finally for today, we have our first volunteer for the Flora Women's Mini Marathon.
Joanna, who works in O2 has signed up to Run the marathon and has set up a very clever link on mycharity.ie. Go here to sponsor and leave a message of encouragement. Thanks so much Joanne, and good luck.

If you want to do the marathon for a good cause like Irish Autism Action you can follow Joanne's example and sign up to support the national office or perhaps choose a school or group that is closer to home. Some of our schools raise more than a 3rd of their wages bill via the Womens Mini Marathon and they always need more help. Email me on affinityautismireland if you are interested and I can put you in touch with your local group.

xx

Spread the Word to End the Word

Nuff Said.
xx

Today in Hamleys

Jules the Assistance Dog and His Mummy and Friend.

Jules' Mummy volunteered to help sell lego pieces today, to help us finish the mosaic.
Jules' Mummy never used to be able to go out like this because Jules' buddy Ben would not like crowds, and he didn't want to stay with a babysitter.

So it was hard for Mummy, and lonely for Ben.

But thanks to Jules, he got to visit Hamleys, have a good look around and find some great new puppy toys.
You see Jules is a very special dog who has been trained by Irish Guide Dogs to help children with autism.
Jules is a calm and constant presence in Ben's life and because she loves new places and new people, Ben can cope with the idea too.

Jules is a working dog but she loves to be petted and when people meet her they can say hello to Ben and his mummy too. It makes the world seem a safer and friendlier place for Ben, and helps other people to understand about his autism, and maybe be a bit more patient and helpful.

If you want to help Irish Guide Dogs to train special furry friends like Jules - go here and donate or volunteer.

Thankyou also to Jazzy and Snuggles who also volunteered today, and to all the people who stopped by to make a donation (like Padraig Harrington!) and put up a few more pieces.

We are halfway there - having raised €5,000 in 4 weeks.

Thanks very much to Hamleys for giving us this opportunity. I am sure the next 5,000 pieces will be just as much fun!
xx

Linky de Links - Journey into Mainstream, From Specialist Autism School.

Irish Autism sometimes gets accused of only focusing on ABA schools and ignoring the needs of the vast majority of parents who have children and young adults in other services.

Okay, us ABA parents tend to be quite loud and march-ey it has to be said, but we are a minority of the membership and I want to try and address the imbalance by featuring some real life tales of education in other settings - which suited the child concerned.

I am also trying to make it easier to include parents from other settings by creating new channels of communication; such as this blog, Facebook and our soon to be launched "Autism Roadshow" coming to an Outreach Class near you.

Today I want to introduce you to Jazzy - a Fellow blogger who has meticulously chronicled her son's transition from an Autism Specific Special School to a National School Classroom. You can click on the links to read each chapter (and please leave a comment for Jazzy if you do. Bloggers need reinforcing too)

Or just go straight to Jazzy's blog and read it all for yourself.

And please note; Jazzy likes to say she is "very lucky" in how her son has coped with the transition. - Well Luck SCHMUCK!

Jazzy has worked incredibly hard, not just as an unpaid autism therapist specialising in what ever level of autism her son happened to be exhibiting at the time, but as a world class facilitator and negotiator for services that her son was eligible for, but were in short supply.

The message is: Be Your Own Consultant, make your own "luck".

Her son is very lucky that he chose such a clever and hard working Mummy.

Jazzy's journey into the centre of Mainstream:

Part 1: Getting There

"We are very lucky in that Snuggles has been very receptive to all interventions thrown our way and is now at the stage that you wouldn't know he has ASD. Well, mostly anyhow..."

Part 2: Getting there - the rest of the way and Uniforms Etc.

"It was - argued that he should have left the Special School a lot earlier....maybe even a year or 2 earlier. One of the concerns - he was outgrowing the Special School and resented going. That NEVER happened. He LOVED going in."

Part 3: The Classroom and Discipline

"The Teacher MUST give the ASD kid the time to process the question she/he's asked so that the child can answer. Even if that means repeating the question... a number of times."

Part 4: Academics

"This is when the class teacher has to, quite simply, adapt a different teaching approach for the ASD child. And probably some others in the class too! "

Part 5: Resource

"It seems to me that the Resource Teachers become Occupational and Speech & Language Therapists, by default! "

Part 6: Interaction With Others

"Our guy has eye contact a lot of the time - is VERY lovable- and ALWAYS wants to interact with other children. The problem was he didn't know how to. He couldn't "initiate"

Tomorrow: more links to some Autie and Aspie bloggers, A request for survey participants and well, whatever else I can think of in the meantime.

xx

Féile Phádraig- conquered!

What better way to celebrate our saints day than by climbing a mountain and raising almost half a grand for kids with autism?

Shay, Jason & Joe on the top of Croagh patrick taken yesterday.

They raised €450 euro between them to support National Advocacy, Information, Diagnosis and Support Groups.

Well done lads and Thanks Maria for the pics!
xx

What I do

Some super little Drummies in Hamleys supporting Irish Autism this Weekend.

This post is going to be my article for the Irish Autism Action PRINT Newsletter this World Autism Day 2/4/09. 

Print? you remember print don't you?

It's like a Pdf on glossy paper with words and pictures; that you can fold and read on the toilet.

Some people still only read print (imagine?) so the I.A.A. are persisting with knocking out a folding newsletter and have asked me to fill a page explaining what it is I do.

You might have heard of me as the mouth from the south who campaigned for Applied Behavioural Analysis for her kids for several years in the media and other avenues.  At the same time I did a home program using part time tutors from respected ABA schools, while my kids attended a state ASD unit - and that took up a lot of my time and energy.

Almost 12 months ago, they were accepted into a full time ABA school and I suddenly had a bit of head space - but still enough energy; so I started to work for Irish Autism Action part time.

My first job was "The Affinity", a chance for all IAA groups to connect with our long term sponsors - O2, and raise much needed funds. 

For the month of October, existing and new o2 customers could text the word "autism" to 50308 and from that point o2 would donate 5% of their call costs directly to community based autism groups which were members of the IAA.

It was my job to communicate this to the groups and ensure that they spread the word and get as many people to text and join as possible. 

As a new parent in a full service ABA school, I could see the enormous advantage of the Affinity because we too have to fundraise to maintain a fully supervised and supported educational program.

The more people who joined the Affinity, the more these schools could expect to receive in quarterly donations, across all of 2009.

Now that could really help with planning and delivery of services that the state doesn't fund.

It was a great opportunity to help our members in every county and I enjoyed identifying and getting to know the key fundraisers in each group. I learned and then shared the best ways to foster community based support networks, and I am so grateful for their efforts.

The Autism Affinity was a huge success- we raised almost €40,000 in the quarter from October to December  distributed amongst the county groups. 

Let's make sure all those people Stay with O2 in 2009 and the groups can continue to collect a similar amount for each remaining quarter.

There are some amazingly hard working parents out there - I call them the "Alpha Mums (and Dads)" who raise literally thousands of euro for their groups and schools and keep them offering the education their children need.

We can campaign all we like for the supervision and therapy entitlements but nothing replaces lost time. The imperative is always to supply what the kids need now - whatever it takes.

Like it or not, we are moving into challenging times and it is the local effort and local support that is going to see our kids through. 

The days of Balls and Golf Days and huge charity auctions might be a little leaner now but - 

I believe that grass roots community based giving and support will continue. 

Time and again the Irish have shown themselves to be a generous and compassionate people who reach into their pockets first and ask what it's about second. 

And when you have a cause or project that is making a quantifiable difference to the lives of people and families with autism - as all of our member groups do; then you will find that support in your community undiminished - whatever the economic climate.

So my role now is to ensure that we continue to network our communities, to maintain the connections and links we made during the Affinity and to reach out and include as many families as possible under the wider IAA umbrella.

There are many families with a child (or 2) with autism out there who have never attended a support group or council meeting. 

They might be too shy to network, or isolated either by distance, circumstances like very high needs or the fact that their child is in mainstream education, but still very much in need of autism specific services and support. 

It can be a vicious circle of no network, no support, no chance to get out and meet other parents and learn about services, and then campaign or advocate for provision of support. 

And as we said last year,

 "Children with Autism (seem to) like spending time alone - their parents shouldn't have to." 

So I thought I should harness the power of the internet, the refuge of the socially awkward (like myself) and use it to connect.

I was very critical of the current webpage, so they gave me that to mind while it is being retooled. I've cleaned up and moved the furniture around a bit but basically it has to stay as is until the new one is ready, so be kind and constructive when you visit.

I also added on a blog as you can see - (now where did that idea come from?) which is a little more opinionated and casual than the website, and a darn sight quicker to update.  - I hope you are enjoying it so far.

I also wanted a Gallery to share photos of all that we have achieved as a group of parents, for parents and set up our Facebook page.

Well, it has turned into a great way to reach out to individual and group members and keep in touch.

Autism Hours can be very anti-social, but there is always someone around when you are and our on-line connections can go on in the midst of bedlam, or the middle of the night without the usual interruptions*. 

So thank you for your support so far. I look forward to meeting more of you online or in person and hopefully continuing to reach out and make more connections that will enrich our combined force.

xx

*My Two Interuptions

Brothers and Sisters - Behold

"I really want to hang around with kids who know what it's like to have a brother or sister with autism" - Fiach Connolly, 8 years old on the Siblings Club at Saplings Rathfarnham.

Fiach's younger brother Caoimh is a pupil at Saplings.

"Being the Other One" – Support for Siblings of Children with Autism

Saplings School for Children with Autism, Rathfarnham, have set up a Siblings Club for the brothers and sisters of kids who attend Saplings. The group has met twice so far on Saturdays in January and February in Saplings School. We are also planning outings for the Saplings siblings over the coming months.

The main purpose of the Siblings Club is to lift the children out of any isolation they may be feeling as the brother or sister of a child with autism. Parents hope that the club will enable the kids to form friendships, have fun together and access peer support. We are also looking into incorporating some education on autism into the Siblings Club, as well as employing therapists and counsellors to work with the kids in a group setting. The aim here is to deepen the siblings’ understanding of autism, help them to process their feelings about their autistic brothers and sisters, and provide them with coping skills for the particular challenges that autism brings into their lives.

Research shows that children with a good understanding of autism and access to peer support tend to have a more positive approach to having a brother or sister on the spectrum.

Watch this space for more.

Adrienne Murphy - Mother of Caoimh and Fiach

Good News and then some....

For Under 5's in North Dublin:

Jonix - Nicola from Jonix Early Intervention for Children with an Autistic Spectrum Disorder has been in touch with the Solas Centre. She said that a new Jonix Centre has opened in the city centre on North Fredrick Street - with 3-4 spaces open for autism with no waiting list!!

Children must be aged from 2-5 years to attend. She also informed me that they have had progress with the Dept of Ed. And they are now paying joinx directly and correctly so all the forms will just need to be filled out by parents . if you are aware of anyone that will benefit from this service within the area please call Nicola Ph: 0868439006

WHEN BOTH HUMANS AND HORSES WIN

Festina Lente in Bray, County Wicklow;  present their 4th Opening Doors to Learning Conference and Workshops in The Royal Hotel Bray, from Friday April 24th to Sunday 25th.  

There will be 2 days of speakers and workshops on Equine Assisted Learning with an optional extra day of Reflective Workshops on the Sunday. Go to the Website to download a PDF and book before this Friday 13/3 for a discount.

These guys know their observable behaviour and I highly recommend you get in touch. It is not a cure but a very positive and pro-active way of learning in non-therapeutic but supportive environment. No white coats or clipboards. Just a lot of love and respect.

Oh and that cute little guy on the pony is Boo!

For more information. Email Jill Carey at jillcarey@festinalente.ie or phone 01 2720704.

And Sing Hallelujah because Simple Steps is Finally (almost) here!

Produced by PEAT "Parents Education as Autism Therapists, NI - Simple Steps is an innovative Multimedia Parent Support package which has been designed and produced by parents and professionals to inform you about Autism Spectrum Disorder (ASD) and Applied Behaviour Analysis (ABA)
These are produced with U.K. Lottery money so were only available free in Northern Ireland but we have negotiated a special bulk price for members of Irish Autism Action. Usually £100, Peat have given us 50 units only for €50 each plus postage.

If you are interested please email me as we will have to organise pre-payment. Peat are doing us a big favour and we don't want to muck em around with this. We are hopefully getting them brought down from Belfast with a friend of the IAA. But you will need to pay postage from Mullingar. When I get my hands on one I will weigh it and let you know.

Peat are also on the Links page of the website, Click here for more info on Simple Steps

And finally, please go to our facebook page or click here to join the petition against Special Needs Cuts. The measure of a compassionate society is how it treats its most vulnerable.  Let us all show our compassion and support.

xx

Happy Links

Temple Grandin is speaking in Dublin very soon and one of my facebook friends has sent me this excellent youtube clip (tissue advisory)



There is a lot of activity planned for World Autism Day which is April 2nd, and around that day.

Check out

Stand Up for Autism Rally for Autism NI
On the Steps of Northern Irish Parliament Buildings
31st March 2009 (12:30pm – 1:30pm)

ABACAS Kilbarrack are having a comedy night at The Laughter Lounge on April 1st (seriously)

4 Great Comedians and Late Bar with and EIGHTIES DJ. You can get some wear out of those old moves - and most of those clothes are back in fashion just leave the acid wash at home please.

They wish you to know that there will be Free Cocktails between 7 - 7.30pm and tickets are only €20 so ring Michelle on 086 081 3027 or Aoife on 086 844 4305

Incidentally there is a meeting to discuss the dreaded Special Needs Cuts for children in mainstream classes on 23rd March 2009 at 8pm, in St. Monicas Youth Centre, Edenmore, Dublin 5. This small group of parents have asked T.Ds to attend to discuss their concerns and they need your support. Contact selecttrish@ymail.com for more information.

Beautiful Casdok informed me of this case in Italy where Google executives are being held accountable for a video posted of a youth with special needs being teased.

Cas has witnessed young people holding up phones to film her son on occasion, so I guess it will only be a matter of time before it happens here in Ireland. Though in my case it will most likely be crazy Australian woman kicking 7 shades out of youth before putting his mobile phone up his bum. - (imagine how many "hits" that would get?)

There is a "report this" option on Youtube, Facebook and other new media communications. If you See Something, Do Something.

For any of you feeling sorry for yourself and in need of a little inspiration, please check out this link to the story a little girl born with Down Syndrome who has confounded her early nay-sayers by turning out to be all her mother wished for. Read it and remember; when a child is born we should congratulate the parent. Bringing life into the world is miraculous. And loving that life will get you a long way.

And finally I posted a long boring rant earlier today on how we can all get a bit prickly about communicating the issues of autism to the Neuro-typical world. I particularly want to hear from those of you who identify with autism personally. We parents are often over sensitive and reactionary when you might not give a shit, or else completely miss the point of something that seriously pisses you off. So tell me already!

Have a great week.

xx

Don't get Prickly

Since I have been using Facebook and reading blogs I have come across many a fine cause or project looking for support - and then perhaps just as many people who object to an aspect of that cause. This could be the language they use to describe what they are about, graphic designs or images used to portray the cause and sometimes even animation or film.

While there are some patronising, offensive and misleading campaigns which exploit the cause of autism, most of the groups set up to improve the lives of people with autism do have genuinely good intentions when it comes to communicating their goals.

Personally, I find it difficult to get on board with any cause that tries to apportion blame for causing autism to anything or anyone - particularly any choice a parent made with the best intentions; and anyone offering a "cure".

That is not to say how autism is managed and supported cannot be improved vastly, but no one gets cured. And anyone promising such a thing better have 3 independent studies using a control group, a comparative group and a study group that has been peer reviewed and replicated to show 100% effectiveness for the group receiving the "cure".

No takers? thought so.

Even my beloved ABA cannot and does not promise to "cure or recover" children with autism. Yes at least half of the children who get early intervention with evidence based applied behavioural analysis informed therapy supported by qualified clinicians in a number of fields; will go on to attend mainstream education with typical peers and learn in that environment.

However, they still have autism and at different times may have to accept limitations in their choice of vocational and educational possibilities or else work harder than everyone else to adapt and overcome those challenges.

But half of them don't. Half of them must remain in the highly supported educational settings where they will learn life skills and independence, at the same time as getting their academic education, in the autism specific environment.

So if we take away the monsters and the snake oil shucksters, we are left with a large number of organisations, such as my own which set out to make net improvements to the lives of people with autism and their families, while trying to offend as few people as possible, most of the time.

Because we are an organisation for and in some cases of people with autism, we seek to represent a complex diagnosis that in many cases impairs communication. However, and perhaps ironically it can be necessary to simplify our message to ensure we reach as many people as possible, not just to raise the funds that keep the wheel turning, and this computer plugged in and running; but the awareness that autism is out there and if you suspect it, you need to know where to go.

The message cannot be oversimplified:

How many of us parents were told that while our kids couldn't talk (TICK)

and wouldn't look at us directly (TICK)

and would just collect toys and line them up in rows rather than play with them (TICK)

That there was no chance of autism because they so obviously loved us and showed visible affection (such as sitting on our lap and hugging us in the Doctor's office).

Bzzz, go back to square one, do not pass go and do not collect €100.

So we gotta get the message right. We gotta tell parents of children with warning signs to get them checked, we gotta tell public health nurses and gps to listen to those parents, and we have to communicate to the wider public that this is what autism looks like and people who have it need to be part of our community, with allowances made.

We have to tell our governments that it is not easy and some of us will develop depression (or road rage, ahem) in our inability to cope with our kids sensory challenges and behaviours.

We have to tell the wider community to support us when the governments don't. And to vote for the governments that do. And we really have to show them what their support CAN achieve.

So yeah, a lot of communication challenges there hey?

Can you come up with an overall strategy for uniting the positive support groups for autism?

Negative media can really harm, but we must tell the real story, and how to improve it- how?

Can you come up with a symbol for autism that unites without alienating the very people who we seek to represent?

The Puzzle really annoys a lot of people, what is the alternative?

Are you comfortable with the language that represents autism?

Are we Dis-abled? Are we in the Intellectual or Sensory Impairments Sector?, Do we have Special Needs?

I quite like the idea of Super-Powers which can be analysed and used for the good.

But there are parents of kids with very intense needs who will be offended by this and post hurt comments that upset me as I have that Aspie tendency of wanting everyone to like me.

Incidentally my Husband and son have that Autie tendency of not giving a shit, so maybe they should write the copy for our next awareness campaign.

Like my friend Charlie Wolf - "We're Here, We're Weird; Get Used to it!"

So, some food for thought. Now I want your thoughts.

xx

Come and Join Us - and help finish this thing!

Clive the BlogDog and his family selling lego pieces for Irish Autism

Yup, I was in Hamleys Dundrum again this weekend. We still have at least 5000 pieces to sell, so I am putting a call out to the Groups that make up Irish Autism Action, and our Valued Individual Members to come down to Dundrum and help us finish this thing!

Please email, text and stop all your friends in the street to implore them to get down to Hamleys and buy a €1 lego piece to support the National Office Advocacy Service and Solas Diagnostics, Counselling and Parent Support.

You can go to see Bolt or Hotel For Dogs in the Cinema, then pop over to Hamleys for a milkshake or smoothie (very yummy)  in the rooftop cafe and then come and see us on the second floor for a few lego bits. 

Hamleys is great fun, all the staff are young and energetic as they demonstrate toys all over the place. You could meet the Hamleys Bear walking around and there are plenty of toys for under a tenner if you want to set a budget for the visit.

And if you love lego - The Mosaic is Amazing.

C'mon! support your organisation and get down and put up a brick (or two)

xx

A is for Advocacy

As you know I have spent a bit of time recently selling €1 lego pieces to kids in Hamleys in support of the National Office, and I have had to explain, many times over what it is we do exactly?

Sure you understand that the National Office supports Solas - which provides Diagnosis, Counselling and Parent Support? but that is all in Clontarf, Co Dublin. 

What exactly are they doing in Mullingar - In Head Office?

Well, a HUGE part of the job of our national office is Advocacy. That is where a parent is in a situation where they are forced to appeal for an improvement or even negotiate for a service that they are eligible for, but for which they are meeting resistance from the Service Providers.

It is a sad fact that in Autism, parents are forced to negotiate with 2 of the most - I'm trying to think of a polite word here - intransient - public service bodies in the state; Health And Education.

I had the good fortune to spend a bit of time talking to someone from the Ministry of Children recently and she explained it for me thus:

in the Public Service you have people like you and me who have trained and been employed to do a job. Within each service you can work hard, achieve and then when new jobs come up in other public service departments, you can apply for them and slowly move up the ladder.

People may move from Environment, to Justice, to Children or Transport and pretty much bring along skills learned in one area to benefit the next. There is an openness to different working practices and therefore an ability to take on new information and adapt.

However, there are two departments where the employees rarely if ever move from or to, once they are there.

You guessed it: Health and Education.

So here we are in need of a co-operation between these two departments in order to bring about best possible practice of intervention and service provision for our kids, and you gotta deal with these guys. 

I don't want to slander anyone, I know there are good people in every walk of life.

But I am talking about a culture of not being terribly client focused here. 

Nothing gets done quickly in these places, you only have to count the number of portacabins being rented by the Department of Ed in schools across the country, when actually breaking ground and building a permanent school would have saved millions, and you will get how they like to move.

Or look at the approach to even setting up the HSE, a very large number of extra people were appointed to the highest public service postings, with little or no net increase to services provided on the ground. I mean ask yourself - Does your community have a Primary Care centre? (no, neither does mine)

Unfortunately the first instinct of these services, when criticized is to put the wagons in a circle and form a posse to take on the parent (usually) in desperate need of a service.

That's right, rather than looking inwards and objectively assessing how they could find a way to provide what the child or adult with autism badly needs, they get defensive and often make things very unpleasant for the parent involved. 

In my own experience (and yes I have had more than one) it involved setting up a meeting attended by no less than 6 professionals from Health and Education, 2 of which didn't really know why they were there!

All to face down little me and my boy who had started up a biting people in their care.

And that unfortunately is standard practice up and down the country. If a parent complains, call in as many people as possible to face them down, rather than just have a bloody good look at how the service is failing the "client" - And FECKING FIX IT!

That's all fine if you are bolshie and brave, or you can afford to employ a bolshie and brave lawyerish type to saddle up and go in to fight for you. But if you can't, if you are otherwise stressed out by the child or young adult's autism, if you are separated or otherwise isolated, then who you gonna call?

Ghostbusters? ah no. But better than that, An Advocate. Someone to make a few phone calls and re-schedule those meetings to a time when they can come with you and help.

Someone who is gonna meet you and talk you through the specific issues that you are having a problem with, someone to clarify what you need and then come with you to help build up your confidence and keep the meeting on track.

This happens several times a WEEK in Irish Autism. And believe me, none of us want that to be true, but it is.

As I said I have had my own little run ins on several occasions in the last few years, but I won't bore you with that now. Instead I will publish an extract from a testimonial sent to me by someone who I had asked the question:-
What is the ultimate benefit of having someone by your side?

"As a parent not of this country but unable to leave it due to marriage breakdown and severity of my son's condition, I knew absolutely nothing of the law or the legal rights of myself as a parent or the legal rights of my child.

I was led to believe, in fact told that I should "just carry on with your own personal development" this left me impotent, I knew nothing, no one, had nothing, had no one, I was seriously considering ending it all, every door I politely knocked on for help was hypothetically firmly shut in my face.

I was given the name of Irish Autism Action and immediately felt that someone else was helping me carry the load I could no longer carry solo, I learnt what my rights were and how to ask for them in a way that would be listened to.

I was escorted to very intense meetings that would have buckled the legs from me had I been alone. I believe such meetings are meant to intimidate and not facilitate anyone.

I was helped to have a voice that could now be heard instead of ignored by everyone.

Without Irish Autism Action I would not now be the strong woman that I am at present who can cope with my son's condition and converse with professionals in the voice that they require so that I am heard and not ignored."

And that is what we do.

Salutations to the National Office. And thanks to this Brave Mama for sharing her story.

xx

To Do: NOW!

This Week You Need To:

Organise yourself and your team for the Croagh Patrick 7 Day Challenge.

This is a nationally organised LOCAL Fundraiser for your group or school and it kicks off in less than 7 days.

So the big end of town have packed up their cranes and gone home, but on a local level people are still giving just as much to well organised and positively pro-active charities in their community.

With this event you have the Backing and Credibility of the National Office, but the funds you raise stay with your group and local community - if you are a member of the IAA.

And Sponsorship Events offer the opportunity for incremental giving that allows everyone to take part and make a difference.

Sit down and make a list of all the activities you need to fund raise for, and how much you need. Then break it down:

For Eg: You may need to raise € 58,000 a Quarter to cover a wages bill for extra staff in your school that the State doesn't cover. (just pulling a figure out of the air here, you understand? ahem)

Well very few people who are not part of a "Golden Circle" are going to sponsor you that to climb Croagh Patrick, shoes on or not.

But if you break that down and say

If you can get 50 people to sponsor you for €10 and raise € 500 you can pay for 

A week of Group work instruction teaching children to play side by side and then interact in a typical classroom setting

4 days of 1-1 speech therapy, or 1 hour each for 20 kids

3 days of 1-1 Occupational therapy, or 1 hour each for 15 kids

3 and half days of planning and supervision of specific behavioural programs and 2:1 support for children with very high needs. By a senior tutor. Or this kind of Help from a Supervisor

Some of you have even more to fund raise for, but don't let people assume your project is hopeless. That €500 might keep a full time tutor in a job for another week. That is one extra week of 1-1 Evidence Based intervention for kids who really need it. It might be the one week when they learn to imitate a tutor, or use a Pecs symbol to get a drink, or start using the toilet, Or say their first word.

Quantify, break it down and explain how POSITIVE any kind of contribution is to your group.

Get your community involved in the climb itself and raise funds and awareness locally. 

Remember the national recognition of the event gives it credibility, but the funding stays in the county. 

Register, NOW!  -  It has been extended but you only have the next couple of days to contact Pat so he can get sponsorship cards out to you this week. 

(Next Week he will be limbering up and climbing) 

xx

PS: Pat has organised an accommodation rate with a local hotel €39 per person sharing B and B every night except Saturday - (which is €69) less than 3 miles from The Reeks in Westport. Ask Pat for the details when you ring. - 087-7607411 or Johnny Oosten on 094-9023343

And LADS? you can do this even though you can't do the Women's Mini Marathon - my next project!