End of an Era (in more ways than one)

The end of an era in more ways than one.  

I think for all parents it is very emotional for their child to finish Junior school and go into Senior School.  Friends scattering to different schools and a big ol change. It hadn't really occurred to me that when Graduation Day came there would be an extra layer that kinda knocked me for six.  This is Ava going to a new special needs senior school but also leaving mainstream which feels really significant and did make me sad.  Makes me think she is losing out by not being with mainstream kids and I have to think there is an element of truth and reality to that. Obviously looking forward to her new school and new friends but a very emotional / nostalgic week.!

Lots of messages from her classmates parents to say how much she has taught those kids especially the girls who really looked after her.  Equally Ava learnt so much from them. 

Onwards and upwards - sometimes the reminder that you child is "different" can smack you in the feels when you least expect it.  In my case it was when she was walking out of the graduation event with them all saying goodbye to her.  She loves / loves her classmates and they love / loved her.  She is in the walls  / DNA of that school and will be missed (and she will miss it so much)

Anyway...onwards dammit. :)

 

First post in years but it seems people seem to visit the blog in decent numbers so I thought I would post again :)

So Ava is 11 years old and doing really great - a while back I did an interview for a radio documentary series called "Six Dads" - it is available on www.rte.ie if you dig around - only the first 3 episodes are out but it covers my experience as a father of a child with DS from birth so maybe check it out - I am pretty happy with how it turned out.

https://presspack.rte.ie/2019/03/24/six-fathers/?genre=137

I saw this article posted on Facebook and was reading through it when I realised the journalist was talking about Ava!

"Speaking of inclusiveness, I found myself observing a little fair-haired angel with special needs, who remembered her words and hand movements better than anybody else. Someone had dressed her with immense love in pink fluffy wings and a silver tinsel halo.

During one tune, the halo slipped over her eyes and she couldn't see. But she carried on regardless, trooper that she was. Nothing appeared to matter to that small girl more than being among her classmates, acting out that story for their families. At the end, her smile was captivating."

Drawing

Just a nice drawing of Ava by her SNAs son :)

Buy My Dress

Haven't posted in ages and this one has no real message other than to say Ava did a deadly photo shoot with Imelda May! The shoot was for Down Syndrome Centre to promote Buy My Dress. 

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.

Graduation Day!

Graduation Day Today! Very exciting day as Ava officially graduated from Kildarton school today.  Next stop big school which is not a concept I am fully grasping yet.  They had a lovely ceremony where they staff had poems about each child and they were given scrolls.  Lovely to have Ava's grandparents and Auntie there to share the day (as they have been a massive part of the journey this far).  Emotional day but a great one, madam took it in her stride and we left Kildarton (a fantastic school with great staff for the last time!  Onwards and upwards.

 

"Ava is so full of chat, we loved to have her around.  We know that she'll do very well, wherever she is bound"

Ava Counts to 10 (out of nowhere!)

This morning Ava surprised us with something she obviously learned in Creche!  A superb surprise!  Makes me wonder what else she might know we are blissfully unaware of

Don't Worry

Breaking News - You have Down Syndrome / Down Syndrome Center

I try not to post unless I have something I think is of significance. Nothing has struck me of late worth posting until two things came along at once this week.

We were advised (I won't say by who but it was a professional!) that it is a good idea to start telling your child (in our case Ava) that she has Down Syndrome? This may seem a blindingly obvious thing to most people but not us? We kind of thought to date that it is all about fitting in and inclusion and we certainly never mention it explicitly. The reason however for discussing this with your child from an early age is that so when it does come up they are prepared / aware and not taken aback / upset. Other children / teachers may mention it and they need to be aware. This seems sound advice so we plan to do it but brand new information for us?

Secondly as per previous posts we have been involved with Down Syndrome Center who provide the excellent Liaison Nurse service and have a great website / facebook page with fab articles. I see from their site that Sheila Campbell is no longer CEO. Sorry to see Sheila go and hope both herself and DSC continue to do great work!

Down Syndrome Centre - New Parents Evening

(gratutious photo of Ava nothing to do with the actual post)

Myself and Ciara (Duffo!) were asked by Down Syndrome Centre to speak at a New Parents evening 09.08.11.

The evening included talks by ourselves, DSC Liaison Nurse Angela O Riordan and Speech and Language Therapist Marinet vanVuren and was well attended (some *super* cute babies also in attendance). It was in the Shelbourne (Dublin City) in a most grand room with a lovely view of the green (hugely irrelevant)

We prepared a presentation with related notes. Myself and Ciara took alternate sections, took questions at the end and were very pleased that people had some to ask.

There was questions about :-

- Starting solids? (Answer we took advice from another mother of a child with a 'regular' child)
- When we started working on communication? (Answer 3 months)
- When to start services? (Answer 3 months).

We just spoke from our experiences and gave our opinions. We emphasized a couple of points, to make contact with other parents and get into School early and start S+L / Dev skills ASAP also. One lady said she was not keen on attending services so early but listening to Ciara was going to dive straight in so that was great to hear (and let's hope that works out ok!)

I also took the opportunity to highlight the deficiencies in Lamh's approach in that you still cant source material online but must instead take a course. It was telling that parents there were keen to start but had not yet taken the course (there was a put your hands up straw poll). Again what a pity that this approach is taken as it surely impacts development of the children? And we pay for it? (puts away soapbox)

I will create a link to the slides and also add the notes (expanded) which may be of use to someone somewhere?

Note that this is our opinion and experiences. As (film reviewer) Mark Kermode would say "other opinions are of course available". As we also said to the parents on the night we are conscious of those with children who have serious heart / health problems and we were aware of that (we have dodged a few bullets so far)

As a footnote ages ago we received a signed copy of a lovely book "It's Me, It's Me" by Jacqueline O'Donohue who recently passed away. DSC were giving new parents copies of the book as they left and I felt it worth a mention as it is such a lovely illustrated book we still read it to Ava. It can be purchased on their site and I would recommend it and hope it continues to get out there.

Say it!

So yesterday morning was started with the news that special needs teaching support was to be cut by 10%. Having (like most) tolerated the cuts / tax malarky that has been ongoing for two years this was the breaking point. Rather than moan about it, I googled my local TD, found her mobile no and texted her. I told her that I had voted her first preference and that this new proposed cut was not acceptable. Within minutes I got a reply, she requested my email and I got the proposed details from the Ministers office. I drafted a letter in response.

Later I listened to Ruari Quinn backtrack. He started by apologising for the miscommunication (as well he should) and then rambled on. Now I am not sure if this was a kite / a backtrack / a mistake? This is not even about how quick my TD replied (as lets face it if the cuts had / do go / gone ahead this would be cold comfort.

The point is contact your TD's and tell them that no matter what this indeed was in the end we are as concerned parents / citizens monitoring unacceptable proposals such as this and will represent those who cannot represent themselves.

Now here is Ava pretending to be a cat.

Trials and Tribs

Evening all,

So Ava is *finally* walking. Not to the shops and back with the papers but twenty steps and still way too cautious but getting there. We are delighted. Major thanks to the physio in Kildarton who worked tirelessly and used every trick in the book. Kildarton do great great work. Here is a video for reasons best known to myself I flipped my phone halfway through so apologies.



Second had my first experience recently of kids being cruel to Ava. Tough one. We were out and two kids (small but old enough to know better)fully walked over and pointed at her and 'impersonated' her. They were literally standing pointing and laughing a foot from her face, She smiled and waved at them. That couple of seconds put me in bad form for two days to be honest. It taps into the deep rooted fears one has I guess? I mean especially with small kids cos unlike say a rude guy at a Supermarket you cant walk over and smash em over the head with a bottle :-)

Anyway take the good with the bad and its 99% good.

Down Syndrome Centre

Afternoon, I recently did some work for DSC and we decided to use the interviews we did as standalone case studies and you can view them on youtube on the Down Syndrome Centre TV Channel

There are two types of parents, some availed of the Down Syndrome Liaison Nurse and some did not. It is encouraging to see 350+ unique views in just one week.

Walking!

Morning,

Cracking result today as Ava has finally made progress in her movement. Here is all the information which someone may find useful.

Ava has been slow to walk. She had been standing and cruising along furniture no problem but was very very cautious. We bought a little trolley from Ikea but again she was wise to the fact it might run away from her and she would fall. This had gone on for ages so yesterday we took action!

We tightened the wheels and put in a Tupperware box filled with sand (we can then adjust it if needs be by removing some). It was still too light so we added a box of detergent and this happened:-

Lester

A quick post on a website that was sent to me about an artist with DS called Lester.

http://www.lestermagoogan.co.uk/index.php/videos/films/film-by-animo-tv-dublin/

Looong Overdue Post :-/

I haven't checked the stats recently so not sure if people still make their way to this blog but sure will do an 'ol update anyway. It has been a few months so sorry :(
Life has been been very busy as we also have our little Dylan. Ava had a good summer but was definitely getting bored by the end of it. This seemed to manifest itself with a lot of shouting which we didn't enjoy much. We were hopeful that when she started creche and "second steps" class in her school that we would see this improve and hopefully see a start to the walking!

So Ava started her "Second Steps" class 4 days a week and also has creche two afternoons a week. We have seen a massive change (all for the good) in her since she started. She is super close to walking now and is definitely trying to talk more. The extra stimulation has her babbling and standing and generally really moving forward with more words etc. There was an adjustment period where a few tears appeared when she started back but these seem to have gone now (fingers crossed)

On another note the last few months have seen me do some more work with Down Syndrome Centre doing interviews with new parents discussing the most excellent Liaison Nurse plus general new parent case studies. They also ran a new parent night in Dublin which was well attended with 60+ people.

Got a reminder from a friend this morning about Punky a new animation series from Monster Animation. You can read more about it here. It launches early next year. The relevance here is that Punky is the first headlining cartoon character to have Down Syndrome. Punky lives with her Mother, Brother and Granny and gets up to all sorts of adventures and mischief! Sounds fab.
Punky will broadcast next year with twenty episodes, each seven minutes long.