Tuesday, January 27, 2009

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.

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,

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.

Tuesday, January 20, 2009

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:-


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

Thursday, January 15, 2009

Grand Parents

So I posted previously about the Grandparents Information Day that took place yesterday. Congrats to Nan P and of course DS Ireland for what I gather was a very productive event.

My parents went (pictured here with Ava Bear over Xmas) and found it very informative. There were discussions on general health, communications and practical information and advice. Overall they felt they learned a lot and found it most worthwhile

They chatted with some of the facilitators and also some of the other grandparents some of which had travelled to Dublin especially for the event. Again how lucky we are to be in Dublin with all the great facilities and support.

Saturday, January 3, 2009

Go Shorty....It's my Birthday

Southdublindad's birthday today! So Happy Birthday to me! A lovely first Xmas with Ava Bear and Duffo. We celebrated Duffo's '21st' Birthday yesterday too (our birthdays are right beside each other!) Xmas was full of lovely walks with Ava Bear and just hanging out

Ava is now doing 'clap handies' and standing up (!) so we are delighted. She also drinks from a straw now which was a hard fought battle for Duffo but she has it totally sussed now.

Anyway Happy New to you all and thanks for reading my blog! I know some of you have some big stuff coming down the line this year but rest assured all will be well.