Whose Lamh-ing now?

Back in 2009 I did a blog post about Lamh.  In the meantime while I was bitching about it someone got up and actually did something about it?  Something Lamh should have done a long time ago? 

That is they (Down Syndrome Dublin) have created a site http://kids.handsthattalk.ie/. The site allows users to interact with Tizzie who will demonstrate signs using ISL. Simple and effective.  It is what people have been looking for for years?

Now here is the question.  ISL?  Irish Sign Language?  Not Lamh?  Well I will look into this further but I suspect they wanted to do Lamh but the good people at Lamh wouldn't let them?  This is not a fact but a suspicion (at this point).

Furthermore in keeping with their cutting edge strategy they recently joined a little known website called Facebook - this in Oct 2013.  This is in fact useful as it has allowed a public forum for people to air their frustration (myself included).  As one poster nicely put it

Too little too late. Lamh should be out there in every school / preschool for the last 5 years at least. Why isn't this organisation willing to share. Anytime we looked for information it wasn't forthcoming ... Everything should be available on line. So easy ... What was the big deal with courses and non availability. What a joke. Free access, immediate on-line access. Simple ! Just do it LAMH.

I hasten to add I do not know this person.  Yeah this is a cynical sarcastic blog post but enough is enough - I'm mad!. 

Lamh have been told time and again by tax payers (that through the HSE fund them) that this is what people want and now they risk being made irrelevant?  I met with them, wrote to politicians and emailed them and nothing.  Shame on them for not serving those who need it most.

To end on a positive note MASSIVE respect to Down Syndrome Dublin.  You. Guys. Rock.  With you were getting the funding instead.

IEP. Easy as 1.2.3.

What is an IEP?
From the DSI site (edited)

IEP is Individual Education Plan and is mandated through the EPSEN Act (2004).  It is a written document which specifies the learning goals that are to be achieved by the student over aindee set period of time. It should not contain everything to be taught to the student in a period of time, but rather, that which is additional or different to the main class curriculum. The strategies, resources and supports necessary to achieve these goals are also specified in the IEP.

The Individual Education Plan is developed through a collaborative process involving the school, parents the student (where appropriate) and other relevant personnel and agencies.

Who was at our IEP Meeting?

In attendance at our meeting were the following

• Us! - Ava's Mum and Dad

 From the School   

• Ava's SNA
• Ava's Teacher
• Ava's Resource Teacher

External (from Ava's services)

• Psychologist
• Outreach worker

Preparation
We prepared by in two ways

• Researching what an IEP is / entails
• Bringing with us our goals / notes

Our Goals
Our main notes going in as parents were as follows:-

• Gratitude - We wanted to express to all concerned how happy we were with the school and the excellent staff.  Ava has settled in great and is really happy there.  We are so lucky she has a full time SNA.  Not really an IEP point at all but anyway:)
• Reading Ava likes to "read" visual books and we want for her to expand her reading ability (sight words / reading) - so too do the school obviously
• Writing Ava currently dislikes writing and this is an area we want worked on
• Social Ava likes to interact and we are keen she maintains social interaction as much as possible
• Home We would like to mirror at home what is taught in school as much as possible.

We also brought with us reports from Outreach / Psychologist etc. with relevant areas highlighted / clear recommendations etc from services to hand to aid discussion or to illustrate a point

Meeting Overview
The meeting was really great and productive.  Everyone combined their input to essentially plan out what Ava should work on and how to work at it.  Importantly feedback was sought from us (and the staff from her services) on how best to teach her and work with her.  This means that our experiences in how to deal with and educate Ava will inform their approach.  I was genuinely impressed with all concerned.

Key points from meeting / general discussion

They are making her a visual timetable (as she is a visual learner)
We discussed Transitioning Tactics as Ava often doesnt like to move from one place to another and gives out so the plan is to distract her before transitioning
Take a break from the table to Ava sometime to regroup (comforting to hear the above two points are common tactics for most kids not just kids with DS)
Toileting - Ava had some accidents in school which is unusual but due to adjusting to new environment (many kids do it too apparently)
Ava will get 2.5 resource hours per week - 30 mins per day (this might change upwards)
The Teacher believes Ava is able for the Junior Infants Programme which was great to hear
Continue Jolly Phonics - class goal is 42 sounds by end of first term
Break each word into individual cards / units for Ava
Do more physical activity (rolling etc.) in general and also this might work well for transitioning periods
Drop in a loop scissors for the paper cutting they do
Outreach suggested Pink circle device to help with drawing shapes
Ava favours right hand - motor skills were discussed which is her weak area
Drop in Pip squeak pens - easier to write with
Take turns with her as she is a visual learner so SNA also takes a turn and Ava learns from this
During resource hours Ava will use an iPad (our family ipad) to do Elmo ABC's as a reward
Continue Numicon as Ava likes it
Feedback was she has Good concentration
We are lucky as they are a kind class of kids apparently (time yet :))
They discussed Yard Games which we will do at home to adjust her to it
Likes PE but not gymnastics they do

• Walk bench
• Catch ball from wall
• Poses

Change activities around to keep interest up
How to teach her?  Staff looking for our input - repeat and cue response is our advice / experience
Jigsaws - Ava likes jigsaws at home and school so we are dropping some in
For News puppet ( ! ) each week we will bring photos of what we did to help recall news
We will use a Communication copy use to say she is tired etc and to exchange information both positive and negative
A copy of the IEP will be sent to the psychologist
There will be a Formal review at Xmas

Sorry this are the main points from my scrawlings hope they perhaps help someone out there

Mainstream School - We made it !

Big day today.  Momentous Day! Ava, 5 years old puts on the school uniform and heads with Mum and Dad for her first day at big (main stream school).  Arrived and sat at her new seat not a bother and (thanks to much advance prep from her Mum) was keen to meet her teacher and SNA (yes we are very lucky). 

I often don't reflect on her DS or situation in general just enjoy her as I do my (non DS) son but today was different.  We didn't get all teary (as some other parents did) but I did think back to 2008 when our family rallied around when she was born.  Shock, ICU, mother's in law bringing food to ICU, appointments, tubes.  We have been super lucky with Ava's medical conditions in comparison to others.  She has actually been sick for the last several weeks but with stomach illness but rallied two days ago. And after her first day in school?  Had a great day!  Delighted - a group effort and we got there.  Onwards and upwards for my little superstar!  Must post more as I see this site since 2008 has had 28,000 page views - thanks - contact me!

Another Graduation...a big day...next stop...school!

A long overdue post, my last was Nov 2013 when Ava last had a graduation!  

Yesterday though she Graduated from Montessori. They had the most beautiful ceremony in the garden in the sunshine as the kids did "The Enormous Turnip" with songs and actions.  There were poems too and everyone enjoyed it.  The Magic Roundabout (about which I cannot say enough good things esp with recent childcare horror stories) had lovely booklets and framed photos for us afterwards.

 

It really was a day to reflect.  Ava is 5 years old now and thankfully in great health.  She starts mainstream school next Sept and even though there are constant stories of cuts we are very excited about her going to mainstream school (an excellent school by all accounts).  It has been a long long while since I have stopped to think back to ICU and early dark days but we have come a long way with support from fantastic family and friends.  Good times.