Grand Slam!

Ok here we go....
















Oh my god I cant take it, what was that penalty for ref?
















Oh my God that kick isnt going to make it, its going to be....
















Yay! In your face Warren! Ireland win. Bernard too! Yay!

Ava Meets the Mayor ( ! ) and other ramblings

Couple of things to report:-

First up and most importantly a massive shout out to Nan P and Sylvaine, we are thinking of you guys and Cathal! Looking forward to seeing his cute little face again soon at Gymboree!

So Ava met the Mayor at at a photocall for Down Syndrome Day (March 21st) last week. Duffo brought her along to lend her support. I heard about this through the DS Dublin Branch

I also attended my first DS Dublin Branch monthly meeting which was interesting, will take one or two more to get the feel for it I reckon.

Also you can buy Lir Chocolates to help raise money for DS Dublin by calling Margaret Carroll on 086 1540652.

Also as I find my way through the DS society I came across Down Syndrome Centre who are only round the corner from my house! Met their CEO for a very informative chat and have to say I love their website and indeed their whole ethos. Must keep in touch with those guys.

To conclude this most rambling of posts the centre have what sounds like a fab talk with Ann Haig Wheeler on early intervention and more information on their site

Oh and finally I heard DS Ireland have no Chief Executive at the moment which seems kinda odd to me? One to watch I think....

Person Centered Planning (*Long Post Alert*)

Morning, last night I attended a talk in Saint John of God Carmona on PCP or Person Centered Planning. The speaker was Ray Murray (Research Associate, National Institute for Intellectual Disability, Trinity College and Disability Consultant) who himself has a granddaughter with an intellectual disability.

There was a huge amount of information

What is PCP?
Basically PCP = planning. The objective is a 'positive desirable future' for your son or daughter. Key to this is having a foundation of total unconditional respect for the person. Take their opinions as to what they want. Create a plan with goals starting with the end goal in mind. This then gives a sense of control and responsibility to all involved and a clear sense of direction. Ray referenced how much like anything in life we are all better off when we plan and set goals (as long as we dont shelve the plan and dont follow it).

Some key points:-

• This is not a one size fits all approach to people with special needs in a community rather it is a bespoke tailored service for each individual.
• This plan is created by a circle of people, that is, parents, services, experts etc. Parents in some instances have opted to not be involved in the planning but rather observe.
  
• Parents often know more in relation to their own child and therefore have invaluable input.
• To implement PCP Services will need to change.
  

It is worth pointing out at this point that while some services do a variation of this kind of planning many apparently do not.

Case Study

To put PCP is context there was an extremely interesting case study, that of David in Galway. Ray became an advocate for this PCP trial whereby a plan was created specifically for David. He now lives near his parents in his own home and is visited by 3 part time care workers as well of course as by his parents. This has made a huge difference and all parties are much happier as they follow and refine the plan.

UK Leads the Way
Whilst this concept originated in the USA the UK is leading the way. Ray specifically mentioned the "Putting People First" Whitepaper.

In Conclusion
Ray hopes we will follow the UK. He sees PCP as the way forward. He said parents should be policital and fight for what they want.

Footnote
Prior to the talk I spoke to a lovely woman with a 15 year old son with DS. She gave me some sage advice which I took on board and found resonated during Ray's talk.

She told me keep your child in mainstream as long as you can. Make sure you trust your own instincts as the experts dont know your child as well as you do. Her child was moved out of mainstream too early and she had to fight to get him back in. She concluded that keep your child integrating as much as possible as when your child is happy they will learn more. When her sons desires were ignored the morale fell and he stopped trying....

Lamh Reply

Ok so I have sent a brief reply to Lamh as below. Having reflected on this:-

• I believe Lamh should be open-source
  
• I believe I was not given an opportunity to meet with them and explain what I had in mind
• I dont believe the Lamh A Long is what people are looking for
  

Anyway I will continue to watch out for this DVD and am also trying a different inroad.....

I am delighted to hear a DVD is planned for this year. All the parents I have spoken with are looking forward to ordering what we hope will be a high quality product this Summer. Can you confirm the actual date when we can place an order?

I would respectfully disagree that “the development of the type I described” would not “fulfill training needs” as I believe that without having actually met you and discussed my proposal in detail that you could actually understand it? I would add that a voluntary organization such as yourselves should welcome input and services from parents such as myself with resources.

In any event roll on the Summer and the Lamh DVD, I will be delighted to see the “Lamh-a-Song” DVD.

Lamh - The Response? "We are already doing it"

Just to summarize I first contacted Lamh back in mid Oct 2008. I later suggested the DVD middle of January 2009 and had frequent communications from their Development and Liason Officer since.

It was argued for example that "Manual sign training is most effective when it is delivered face-to-face." Also when I mentioned people on the DS forums who had no access to training I was told "this issue can be answered by the Contract Training system, started in 2006, whereby groups of families can contract in a tutor themselves, so please pass on this information if required"

I got a response today. They are doing it already but it was a secret! Hmmmmmm.....

I would love to hear your comments on this and will draft my own response (to Lamh) in the coming days.

Please note the following before you read this and the section I have highlighted in bold below.

Kate08 from the DS Forums posted on this thread 22 Jan that "It's a great idea and I hope Lámh will go ahead with the DVD at last . I emailed the Lámh office almost five years ago about this , and was told that there were plans afoot to make a " Lámh Along " DVD of nursery rhymes with signs"

So five years later here is what just I got back from them today:-

9th February 2009

Dear Dave,

I’m responding to you on behalf of the Lámh Board of Directors. The Board would like to sincerely thank you for your letter and interest.

As mentioned previously in emails, Lámh identifies development goals for a period of time ahead, and several projects have already been planned long in advance. As you will see below, a DVD project is already planned for this year. A development of the type you described was previously undertaken and turned out to be a huge project that didn’t fulfil sign training needs. Hopefully the project Lámh has planned will be of great interest to you and the families you have been in contact with.

The project planned is a DVD of nursery rhymes/songs with signs, for young children who are using Lámh, so it’s very exciting! Lámh wasn’t in a position to make an announcement until the project was confirmed. The production has already begun. The DVD will be called ‘Lámh-a-song’ and the aim is that it will be available this summer. A huge amount of preparation has gone into this project already.

As discussed in previous emails, the teaching of signs in a face-to-face setting is highly valued, as is the opportunity that the Family Course gives to families to seek advice and support from both Tutors and other families. As you will know, the Lámh Family course is attended by families of children with different communication needs and it’s designed to provide the space for different issues and strategies to be discussed. As training is highly valued, recent developments have included:

§ Training 26 new Lámh Tutors from healthcare/education backgrounds;

§ Setting up a Contract Training system whereby groups or services can contract in a Lámh Tutor themselves to run training;

§ Piloting a new Training for Trainers course so that healthcare/education professionals can train as Family Course trainers in addition to the Tutor Training structure, thus increasing the amount of Family Course Trainers available.

Another development planned for this year is a review of vocabulary for families, looking at different age groups of Lámh users. This too is a very welcome development and will involve consultation with Lámh users and their families, teachers, speech therapists, Lámh Tutors and others.

Lámh would like to thank you again for your interest, to assure you that your proposal will be kept on file and we would hope to contact you again in the future in regard to this.

Kind regards,

Give us a Lamh (Long Post Alert)

Evening All, I started a Lamh course last week. Off to my second course tonight. I had an idea recently that a Lamh DVD / Online Video would be a good idea because:-

• Not everyone can make it to a Lamh course.
• Most family members (grandparents etc) will not make it to a Lamh course (in my family anyway)
• I would prefer to put my daughter (Ava bear) in front of a Lamh DVD for five minutes than Baby TV
• My parents / sister even suggested this was a good idea.
  

As I work in Video production I would be well placed to get this made to a very high standard. If needs be I could produce a 'proof of concept' to prove as much.

I put a post on DS Forums (login required) and below is a synopsis of the responses (from people with DS Children)

I am sorry to say that the only people who (currently) dont think it is a good idea is Lamh themselves. I may post some of the actual correspondance later on but for the time being I am waiting for a formal reply from the Board.

Responses:-
I think it would be a great idea as LAMH needs to be learned by all the family and the extended family and it is not always possible (prob never) to get them all to do a course.Great thinking!! If I can be of any help let me know. Hope this works

A truly brilliant idea!!
Aisling x

I too LOVE this idea. I find it very very difficult and a big ask for all of the people important in my sons life to participate in this course as they are all already very much involved in babysitting REGULARLY for me for all the physio and speech and languages meetings we go to. I did attend one course with my husband and my sister and found it wonderful but think a dvd would be invaluable and a far far easier approach for myself, my family and our needs. I hope this does go ahead.

Brilliant idea. For family/babysitting reasons, I did our Lamh course on my own, and while Kevin's Dad is interested and wants to use Lamh signs he's depending on me to teach him 'second hand', as it were. If there was a DVD that the whole family could watch and have as reference it would be fantastic!

Hi Dave, I think that is a really good idea.
When we did a Lamh course last year, each parent took turns and did some of the signs and we were all videoed, so we could each have our own, 'local' copy. However, the SLT later said that Lamh had some copyright issues about this and we never got our dvd.
So, if you can get this organised, I think it would be great. I'm currently trying to show my daughters creche workers, some of the lamh signs and I have to say that, some of the photocopied drawings of the signs that we got are very unclear. It seems that you cant buy resources from the Lamh site, which is a pity.
So, great idea,
Lucy

Brilliant idea
and your only on day one of the course
you will be in full rant by the end
I did it last year and was really frustrated that no dvd existed and was all plans to do it myself, just for my family

again we were told that alot of the materials were copyrighted ...
here goes the rant
how can they be educational proposes ?
Lamh is tax payer funded ?
anyway of course better to do anything with their permission but home videos on you tube ??
while on the case also annoying that their is no fun stuff with Lamh
cartoons etc a few puppets no clowns mind you
anyway anything i can do to help drop me a line. I love dressing as a children tv presenter. I even own bright green astro turf flares.( joking)

I think this is a wonderful idea we did our lamh course last October and since have been showing our 5 year old who is then going into school and showing his teacher and friends in his class. We hope eventually that Adam will also go to this school and if the teachers and pupils are already prepped for him it will be in his best interests. So would definitely buy it for the school.

Have to agree how fab would a dvd be. My two year old is aadicted to tv especially something special but they are english sign which has some variation on lamh. He's been signing for at least 6 months and would love to encourage him to extend his reportoire. Also my mother in law has just moved over and is keen to learn the signs, but I don't thin she would do the course. Keep us updated or if there is anything we can do to help.

It's a great idea and I hope Lámh will go ahead with the DVD at last . I emailed the Lámh office almost five years ago about this , and was told that there were plans afoot to make a " Lámh Along " DVD of nursery rhymes with signs .

It's such a shame that they don't provide better resources . All I was given when I did the course was a few very badly printed cards with very limited vocabulary . I later got a photocopies of the new signs but as they say themselves , you can't learn properly from pictures .

My husband couldn't attend the course so he never learned and I was the only person who used the signs with our little girl . It used to frustrate everyone when she would be signing and no one else knew what she wanted , it defeated the purpose of teaching her Lámh . DD used to love the Sing and Sign DVDs from the ELC and Something Special too . My younger child picked up loads of signs from both but of course they are Makaton so the " wrong " signs . It bugged me that parent of typically developing kids could go to babysigning classes , and buy DVD to teach babysigning to thier babies, but the parents of babies who would most benefit from sign couldn't get training in Lámh .
However I'm totally convinced of the benefits of Lámh . I know parents who were reluctant to use it in case it prevented their child speaking , only to find their child didn't learn to talk very well anyway ( as a preschooler ) and could have really benefitted from having signs to communicate with

I know we'd use it for relatives & would be very interested in the "Lámh Along" DVD that Kate mentioned. We've seen the Makaton programs but are reluctant to use them as Ciarán might pick up some signs that we wouldn't understand & it'd just lead to confusion.

It's a fantastic idea, of course not everyone who is connected to the child is able to go to a course and a video would greatly improve the level of communication our children have with the people they interact with. The pre-school my little boy, Alex, goes to was very supportive and learned new signs as I brought them, but if they had a video it would be easy for them to searchh out the signs they need in particular circumstances and use them.
I really do hope this goes ahead and good luck.

Irish Times Article 20-01-09

My sister gave me a heads on this article from todays Times, a lot of the parents sentiments resonate strongly with me personally:-

http://www.irishtimes.com/newspaper/health...2059661022.html

Down Syndrome Ireland is organising conferences for new parents to ensure they get all the support they need

FOR MANY expectant couples the thought that their child might have Down syndrome is a thought that fills them with dread, but that is not how the O’Neill family have experienced the reality of it.

In August 2007, Erica gave birth to Charlie in the National Maternity Hospital in Holles Street. Now 17 months old, Charlie has learned to communicate with sign language and looks happy and healthy.

When Charlie was born in Holles Street, the paediatrician set a positive tone from the beginning pointing to students with Down syndrome who recently completed a pioneering Trinity College Dublin course in contemporary living which will allow them to enter the world of work.

Robert and Erica, who live in Firhouse, south Dublin, say Charlie has been an overwhelmingly positive experience which has pushed them into doing things that they would never have done before and the only drawback has been cruel things that people have said, sometimes intentionally, more often unintentionally.

It is a common problem that people often do not know how to react when a child with a physical or intellectual disability is born. They don’t know what to say and often end up saying the wrong thing. Those who work in the area of Down syndrome advise against expressions like “sorry” or any other expression of commiserations towards the parents.

Other ill-advised comments include saying that the child is a gift from God, that they are special children or especially loving, saying that a child doesn’t look like he or she has Down syndrome or that their symptoms appear to be mild.

It is also not appropriate to say “Down syndrome child or children” as if the children involved were defined by their disability. The correct expression is children with Down syndrome.

“One particular person rang Robert and said ‘commiserations’ after having a baby,” says Erica. “The thing that upset me is you carry a baby for nine months, you go into labour, you have that child and people do not even say congratulations. Maybe things haven’t worked like many people might have thought but you still have a baby at the end of it.

“The least that people can do is say ‘congratulations’. People say to us, ‘it must be hard for you’, but it’s not. It’s as hard as you make it,” she says.

Robert says they resolved from the beginning to treat Charlie no different from their other two children, Heather (6) and Aidan (4).

“A friend of mine said to me around the time of his first birthday, ‘if God came down and clicked his finger and changed Charlie, would you want it’ and I said ‘definitely not’ because he would not be Charlie.

“We’ve fallen in love with him. I have the same expectations for him as I do for our other two children.”

Charlie attends Cheeverstown House, a centre for children with special needs, and Robert ran the Dublin City Marathon last year to raise funds for it. Running a marathon is something he would not have contemplated before Charlie was born.

“The gas thing is that people feel sorry for us. People are saying ‘God love them with a Down syndrome child’, but it is the complete opposite. We couldn’t be happier,” Robert says.

Though the O’Neills are determined to be positive and optimistic about having a child with Down syndrome, many parents struggle with the experience.

This weekend Down Syndrome Ireland is hosting a conference for new parents who have a child with Down syndrome under the age of two.

The weekend at the Grand Hotel in Malahide is now sold out with 50 couples taking part. Down Syndrome Ireland intends to host another two conferences for new parents in 2009 such is the demand.

Down Syndrome Ireland chief executive John Lindsay says: “The one thing that comes across strongly is new parents need all the support they can get in the early years.

“We need to inform them about all the early intervention teams available from the HSE. With the odd gap here and there the service is fantastic throughout the country. Parents need to know how to access them.”

The weekend is designed to focus on the parents whose needs are often forgotten about when a child with Down syndrome is born.

Counsellor May Gannon, who will advise the couples taking part, says parents of children with Down syndrome often struggle with feelings of guilt because they do not regard the birth experience as being as positive as they had expected.

“Nobody celebrates the birth of a child with Down syndrome in the same way. They don’t feel the same joy. There is a lot of concern and worry about the child because you’re plunged into a world of disability that they don’t know anything about,” she says.

“I will be emphasising that they have a baby first and foremost and that they do experience different feelings at the beginning. Any negative feelings they experience are actually a positive sign that they are coming to terms with the situation.”

Though the chances of having a baby with Down syndrome at one in 600 is relatively high in medical terms, most parents do not even consider the possibility.

“The number of parents who tell me it never occurred to them is far more than those who considered it as a possibility. Those who do, say they will deal with it when it happens, but it is something that is difficult to prepare for. It takes a huge commitment. There are different care issues around, but you do exactly as you do with other children, just more of it.”

Gannon says children with the condition are often subjected to stereotyping both positively and negatively which benefits neither them nor their parents.

On the one level some people regard children with Down syndrome as intellectually and physically incapable in every respect despite the fact that the majority of them now attend mainstream schools.

On the other hand, she says children with Down syndrome are stereotyped as being veritable angels and their parents are told to accept a “child from God” – an expression which has its roots in the old Irish phrase “duine le Dia” or “people of God”.

“Parents who are told that the child they have with Down syndrome is a gift from God should say to the person who says that, ‘you take it and look after it’. They don’t feel that.

“Having said that, the majority of families say children with Down syndrome bring a lot of gifts to the family and they can contribute to society in a real way. They have a contribution to make and it is not all negative,” she says.

This weekend’s conference begins an extremely important year for Down Syndrome Ireland. Last year it won the right to host the 10th World Down Syndrome Congress which will be held at Dublin City University from August 19th to 22nd.

It will have as its theme Lifelong Living and Learning , a recognition that the life expectations of children with Down syndrome is radically different to what it was even 10 years ago.

New parents interested in taking part in future Conferences for New Parents should contact Down Syndrome Ireland at 01 426 6500 or 1890 374 374