Lily annd friends photo

Paul has worked out how to get photos off my camera onto the computer - hopefully I'll learn how to do it too sometime.

This is a picture of the group of kids at the transition camp - typical of Lily to end up in the front!

We're beginning to prepare now for our weekend in Auckland seeing Beth admitted to the bar - It's at the high court and she has to wear a wig so I hope I can get some pictures. We'll also catch up with Rachel who we haven't seen for over 18 months - and we'll take her out to a posh restaurant to celebrate her 21st birthday which she's just had. Then a week after that we go to Australia to see my brother Jon and will spend the day before in Wellington with sister Caroline. I need to get Australian visas and a travel cot sorted out.

Christchurch weekend

Lily and I have just got back from Christchurch where we spent 2 nights at the NZDSA transition camp. 15 soon to be school leavers with Down syndrome and a parent each learning about the complex structures that exist to help ease the transition from school to work.
We left the house at 8.50 got to the airport far too early for our 9.50 flight and had half an hour for a cup of coffee. We arrived in Christchurch at the same time as the group from Auckland, all of whom had needed to leave home at 7am or earlier to catch a flight leaving at a similar time to ours. It made me realise how much easier our life is now than when we were in Auckland.

Before collecting our luggage, Lily and I went to use the ladies toilets, I came out, waited patiently for Lily and when she didn't appear went in to call her - no answer but remembering her hearing loss I thought perhaps she couldn't hear me so wandered around a bit, thought about collecting our bags alone but decided I might loose her altogether, then went back into the toilets and called a bit louder. After about 10 minutes of this I decided to go to baggage collection and to phone her from there. On the way I walked past the DVD shop and there was Lily, earphones on blissfully listening to music!

The conference was held at the Sudima hotel, within walking distance of the airport. The staff were very welcoming to the delegates with Down syndrome and even one of the other guests came up to me saying he'd never seen so many people with DS together and wishing us well.

There were some great speakers, although it was a bit scary seeing just how many organisations and government departments are involved in this transition process - ministry of social development, WINZ, MoH, MoE, VASS, ASENZ, IHC etc etc

On the whole the kids with DS had their own sessions (which included a trip to the Antarctic centre just next door) but this morning we had a joint session where they shared their dreams for the future with their parents. One of the exercises was to ask what they'd wish for if they had three wishes. Lily's not terribly helpful answers were
1. to meet Julie Andrews
2. to meet Alan Rickman
3. to start in a Harry Potter Movie

Lily had prepared a poster which had some more realistic ideas like, go flatting, learn to read and learn to tell the time and some less realistic but still interesting ones like developing a film making unit for people with DS.
Lily was chosen as the speaker to report back their work to the main forum, She really has remarkable speech skills and confidence for doing this.

The highlight of the weekend was probably the disco on Saturday night - the UPP club members from Christchurch also attended so there were around 30 young people with DS. Once the music had started they danced and danced and only stopped when literally the plug was pulled out!

Lily's ENT follow up

Each time I take Lily to see the ENT doctor, I have one more child with Down syndrome with me - the first visit was just her, last time I also had Isaac and today Noah is home from school with a croaky throat, so I had all three of them - he probably wonders how many more children with DS I have!
As we suspected, the steroids have not made any difference to her hearing so we tail them off now. He''s given us some information on hearing aids and will see us back in the public system as she needs a CT scan of her ears (which would cost $1000 privately). She has about a 40 decibel or 40% hearing loss over all frequencies.

We dropped Lily off at school and Now Noah and I have just made a Devil's Food cake as its Paul's birthday today. Noah pulled all the wires out of the computer and playstation yesterday so is not allowed to watch any screens today (TV, DVDs computer Buzz game on playstation) - this is a major punishment for me too - what am I supposed to do with him all day as he's off school? At the moment he's unloading the dishwasher, but I'm not sure how long the helpfulness will last. I think he hopes I'll give way on TV - he already tried to persuade me that Isaac's favourite DVD is the Gruffalo!

We have Noah's IEP this afternoon - we'll be going against the flow of traffic when we take him into school for 3pm. I hope we can all concentrate with Isaac, Noah and J playing around us.
Then Joe, Abi, Sam and Anika are coming for tea and we're getting a Indian takeaway so I don;t have to cook after the IEP.

Tomorrow Lily and I are off to Christchurch for two nights to an NZDSA meeting about transitioning from school to work. We have to dress as one of the stages of our life for the Saturday night meal. I've printed out a sign that I'll pin on me that says "Who are all these children and why are they calling me mum?" that about sums up the last 25 year stage of my life!

father's day, Lily's confirmation

Last night for an early birthday present to him, Paul and I went to watch Gilbert and Sullivan's Iolanthe - a real grey haired brigade audience, which means of course that we fitted right in!

Hannah was babysitting and I asked her to write on a fathers day card with Noah and didn't realise she'd forgotten.

A 6am wake up for Paul with Noah and Isaac in his bed wishing him a happy father's day. I sent Noah to look for the card which I thought Hannah had written on with him. About 10 minutes later I had that 'awfully quiet' feeling and went to look for him. He couldn't find the card and so instead had remembered the drawer where I keep birthday cards, chosen his own (a rather nice one with a picture of chocolates on) found a pen and started writing - this is a boy who has great trouble even writing his name - who we had no idea could spell anything

I got there while he was trying to work out how to spell "from"

We were just so proud of him (I didn't even think to be cross he had raided my drawer)

this is his writing

and this is Paul enjoying father's day with Noah, J and Isaac

We were also very proud of Lily today as it was her confirmation. She had to write her testimony to go in the church newsletter - she started trying to write it herself but in the end dictated it to us. It read

"Hi, if you don’t know me, my name is Lily Harper. I wave the flags at the front of the Church. Every time I wave the flags it makes me happy.
I was born in the UK. I have Down syndrome. I was adopted. My birth Mum and Dad couldn’t look after me. God wanted Paul and Angela to keep me for always.

I love church it is a fun place to go to. I go to church because I believe that Jesus died for me. I believe that God loves me and I want to follow God’s ways. "

Joe was her sponsor. There were twelve people confirmed and it was a great service. The photos below were very poor quality being taken in poor church lighting without a flash, (and they are still very poor after all the bells and whistles I know how to use on photo shop!) but you can see the bishop laying hands on her.

Noah, Isaac and J behaved very well throughout the service, needing only the minimum of toys that I keep in my handbag. Towards the end though J said "Is it nearly finished?" I said "Why do you need the toilet?" and she said "No, I can see the food over there and I'm really hungry"

The second the final hymn finished J and Noah disappeared at the speed of light towards the cakes and it was only when the drummer from the music group rashly said they could have a go on the drums that they reappeared!

Isaac needs surgery, house is growing

We got an email from the paediatric surgeon at Starship (the children's hospital in Auckland) saying that yes Isaac does need surgery for his hiatus hernia and has been added to the waiting list. He hopes he can do the surgery laparascopically like last time and he will use some mesh to reinforce the diaphragm.

I watched Isaac sleeping peacefully holding onto the little bird on his toy and thought of how it's a long while since Isaac had a hospital stay and how he'll be so much more aware of everything this time.

I wish experience made it easier but instead with both Beth and Isaac waiting for surgery and Lily on high dose steroids I'm reminded of those early days when Noah was so sick and then battled infantile spams and we learned about the roller coaster world of sick kids. Also of course we know the practicalities - that the ward is so cramped with no single rooms and that parents have to leave their mattresses on the floor at the end of the corridor during the day and pick them up each night.

However we have learnt so much, that I think we'll cope much better now - hopefully Paul will be able to take a week's compassionate leave and share the mattress sleeping duties with me! We may even get a room in Ronald McDonald house and be able to bring Noah up with us too, and we're lucky that we have so many big kids in Palmy who can keep an eye on Lily and Hannah.

On a nicer note, our new house is growing. It looks enormous even as a concrete slab and I remember the concrete slab for our house in Bury St Edmunds looked so small I thought it was the garage! We can see what size the windows will be now they have started putting up the framing and to think I was worried that it wouldn't be light enough!

Noah was excited to walk round to look at 'our being built house' after school but afterwards was so exhausted he couldn't be bothered even to take off his coat and bag before having a rest!

"lady to behave me"

Noah's behaviour therapist visited again on Tues and I finally understood what it was that Noah was calling her "the lady to behave me"
She wondered if he has some sensory issues so we did a questionairre and it was interesting to think about how he used to and sometimes still does love to spin, to stoke things, to bounce on the trampoline, to cover his ears to some noises, to walk on tip toe, not to get his hands messy, to hate to have his hair cut or washed, to walk on sand etc etc
She will try to come up with ways to counter act any sensory issues and this may calm him and help his behaviour. She is also going to talk to his school this week.
Mostly his behaviour has been OK although he has found a new thing to fiddle with - it's the tap that turns on and off the water to the toilet cistern - of course we only discover this long after he's done it (and too late for a consequence as he's forgotten all about it) when the toilet won't flush. It's embarrassing for this to happen to visitors.
Yesterday I drove all the way to the hospital to Isaac's feeding clinic only to find the SLT wasn't there. Only then did I remember that last week she had told me it wasn't happening. Luckily Paul has a few minutes free so we had a coffee together.
Decided to be a good mum after school and involve the kids in some baking. However by the time I was ready Noah wanted to watch Jurassic park and J had found a new game on the computer where you could dress a bride. So I ended up making banana muffins and coconut cake all by myself - they seem happy to eat it though. I feel like the little red hen!

return to routine

Celebrations continued all weekend. It was Lily's party on Saturday when a jet-lagged Paul managed to fall asleep in the cinema while watching a cartoon version of Star Wars with five kids with DS. On Sunday we had a family lunch in Lily's honour with Beth and Joe and Abi, but unfortunately not with Lily! She had gone to a confirmation preparation meeting and will be confirmed next Sunday evening.
Monday was Beth's last day with us. She had an appointment with the gynaecologist who recommended doing a laparoscopy - so Beth should be back here again for that before too long.
Paul and I went out on date night in the evening - we are trying to make this a regular thing with Hannah coming in to babysit. There were only Noah and Lily for tea as J was on an access visit and Paul and I were going to eat out. Just needed seven fish fingers and one tin of beans - what a change from the days we had seven kids at home.