three more days of school

I'm needing a rest after looking after the two little boys for respite care (by the Sunday afternoon they were beginning to settle into our routines but them it was time for them to go home) I was talking to my mum on the phone about how hard it had been and she said (in the way only a mother can) "Well, you're too old. If you DID go out and do paid work Angela, you would be retiring in seven years time." No better way of reminding me of my age!!

I was just thinking that perhaps we'd have a nice quiet week this week when I realised that it ends with Good Friday and with that two weeks school holiday. Noah can't even go to school today as he has another nasty infection on his knee needing antibiotics and Isaac has just finished kindy for the term. Still one good thing about having two extra live-wire little boys for respite is that just Noah and Issac seems easy - it reminds me of the whole reason for having children's birthday parties, or of having childbirth contractions - it's so lovely when it's over!

siege mentality

Have nearly survived 24 hours with respite foster children - just got 2 year old down for an afternoon sleep, 4 year old watched half a DVD with a lot of support from me about needing a quiet time. I am existing on a lot of coffee and sometimes seem to be coping just minute by minute with a lot of help from Paul.

I am remembering how hard parenting is with little sleep (2 year old resisted sleep until 8.45pm last night and woke at 3.45 am and 4.15 am - but mostly it was me not able to get to sleep while I wondered who would get out of bed and end up where)

Also remembering how when you have lots of little children you have to go out no matter what the weather - we had a wet visit to the park in the just about stopped rain - (Paul and I each having one boy on reins and one older boy not listening to directions!) and how strapping four boys into car seats is one way to contain them all for a few minutes.

Amazing how quickly kids without disabilities learn eg. how to get out of harness on highchair and find dangerous things to do eg. walk along inside of upstairs banisters

The boys foster mum (who is about my age) has five foster children aged 6 and under and because of this the fostering agency force her to have respite care - we thought she'd be going away for the w/e but although we have the two boys she is left at home with another two 4 year old boys and a 6 year old girl. I think the boys are used to a very noisy household and for probably the first time ever I'm think we run an ordered calm household!

Still they go at 2pm tomorrow and I am bribing Noah (who is exhausted after camp) that if he behaves (ignores the boys) we will go to the movies tomorrow afternoon.
My two girls have escaped - Hannah is at a beach wedding and Lily is having a two night sleepover at her boyfriend's (more innocent than it sounds!)

I know that all their bravado hides quite confused and scared little boys, but wouldn't it be nice and much easier sometimes to have a child who just showed their fear directly?

No Noah

I am feeling quite adrift at the moment as Noah and Paul are away on school camp for three days. It's made me realise just how much of my life revolves around Noah. Now we have no getting to school routine and I slept in till quarter to eight on the first morning - this morning we were almost late to Isaac's mainly music group because it is so linked into dropping Noah off at school. Isaac is enjoying the time with me I think, although he couldn't get to sleep the first night without Noah in the nearby bed. We keep signing "Where's daddy" and "Noah Goodbye" and Isaac seems to realise something is very different.
It's not that we haven't been busy - Isaac's behaviour therapist came on Wednesday morning, yesterday was ABCD group and then we went with Hannah to the VIP evening at the Plaza in the evening, it's just that with only four of us (me, Hannah, Lily and Isaac) the house seems so quiet and aimless somehow. Very fast to get food, hardly any tidying or washing to do - is this how it all all the time for most people in their fifties?
Paul has phoned occasionally with such gems as "Noah put his foot in Wellington harbour." "Noah is lying on the floor of Te Papa (museum) having some down time" But on the whole it seems Noah is trying very hard and they are both having a good time.
This afternoon my lazy time will come to an abrupt end as two little boys aged 2 and 4 are dropped off to spend the weekend with us and give their foster parents some respite. Then Paul and Noah get home at about 8.15 - the plan being that the three boys will be fast asleep by then. Hope it works!

Before the ball (out of order)

The photos of the ball are so great I couldn't wait to post them, which has made the story of the rest of the weekend out of order.
Two things that had never happened before occurred- one, Noah got lost (that bit is obviously not for the first time!) and for the first time we called the police and two, at the church AGM I sat and listened and changed the way I was planning to vote .

Beth and James came home this weekend so they could come to the World Down Syndrome day ball with us. It was also going to be their goodbye visit before they move to Sydney but they’ve now been invited to a wedding here in April so we’ll see them again.
On Saturday morning Paul needed to work quietly at home writing about his warfarin management programme inronline for Roche. We all got out of his hair and had a lovely Saturday morning first visiting a family fun day at Bunnings DIY shop (where Isaac’s ABCD early intervention group had a stall) then showing Beth the new Plaza shopping centre.

We met up with Paul. Hannah and Lily and all of James’s family and all had lunch together at the Coachman there were twelve of us altogether. I only had a few toys for Noah to fiddle with but he still behaved really well, he sat between Hannah and Beth so is hidden in the photo.

After lunch the hotel receptionist said we could look around the areas where the wedding reception will be held. During this time Noah couldn't resist the main staircase and went upstairs, the first time Hannah managed to get him back but the next time she called me instead.

I told him to stop and even did my stern counting to three bit, but Noah's impulse level was well beyond that so it just made him run upstairs faster. Rather than shout and make a big deal of it I just let him go, knowing that the less fuss the quicker he'd get out of impulse mode and that he has a pretty good sense of direction so would find us again. In retrospect this may not have been the best way to impress future in-laws with my parenting skills.

After about five minutes Noah had not reappeared, so we did the stroll around looking bored and calling "Noah" in a kind of sing-song voice as though it's a game (This is the only voice he'll respond to so however cross we are we have to keep it like this)

Gradually a bit more worry kicked in and our whole party started searching the hotel - we now know the set up of the Coachman hotel pretty well, including the staff restroom, kitchen, underground carpark and where the Christmas decorations and spare mattresses are stored. The Coachman staff were very good and phoned through the hotel and got ready to look though all their camera feeds.

Two cars went out looking along the streets in case Noah had decided to walk home and once he'd been missing about half and hour I decided to call the police because when a little girl with DS wandered from a church breakfast she was found and taken to the police station (by a shop assistant as she had wandered to the nearest supermarket collected a trolley of shopping but couldn't pay!!)

The police were very good (as on the previous two occasions when I'd phoned them about the little girl from church and the little boy with autism who nearly got in the river while visiting our house) and didn't make me feel at all as though I'd been negligent.

Luckily before the police had time to arrive Noah was found in the motel next door by Beth and the hotel receptionist. He had wet hair which he said was from the swimming pool so was rather worrying. Paul had checked all the pools he could find as his first places to look so Noah must have got there later. We tried to get the full story from Noah who was a bit bewildered at how upset I was and said "I was waiting for you but you didn't come."

It seems he had tried to return downstairs to us in the Coachman but had used some backstairs and as he didn't see the door to our floor he'd ended up in the basement carpark, he followed the spiral road out of there and couldn't immediately see the hotel entrance so walked further along to the motel. Then he found the gym there, which as he explained had lots of machines you could get on. Of course his concentration was now on the machines which left no room to think about being lost and looking for the rest of us.

Not the best of ends for our two family dinner, but once I'd got home had a sit down and two cups of coffee I began to feel a bit better. Noah of course had totally recovered well before me, was sad to have upset and worried us all, but is in no way likely to be able to resist similar impulses in the future.

On Sunday Paul and Hannah worked very hard setting up flowers, lights etc for the ball, but we decided it would be easier if I kept the boys out the way by taking them to church (this is not the only reason we go to church you understand!). As Beth was with me Lily decided she'd sit with us too instead of in her usual place in the front row.

At the AGM afterwards the usual long boring stuff happened but there was a vote on whether the church should apply for funding from lotteries for building the new church hall (The Lotteries fund - raised from gambling - is the only way Government money can be given to building projects)

I was planning to vote yes, as I'm so used to the Down syndrome association needing lotteries and pub charity money to survive, that I think I'm kind of inoculated to the ethical issue behind it. Then I remembered that I had initially been sad and uneasy that NZDSA needed money from alcohol and gambling thinking what a sad reflection of society this is.

The difference is that the NZDSA does not have a voice about ethical issues (outside those affecting people with DS) whereas the church clearly says it does not endorse gambling. People spoke well to both side of the argument (and less well as in "this is what the Bishop's wife said to me" and "God has told me which way we have to vote")

Arguments I found most influential were from those with direct experience of the harms of gambling and the person who said
"the reason we're having this vote is that we're uneasy about whether its right or not which shows we should vote against it"

It became clear how important an issue this was to many people so I began to think the church shouldn't go ahead with applying for funding when so many of the congregation would be very hurt.

The final vote about applying to lotteries was something like 25 for, 50 against, and 4 abstain. I said to Beth afterwards that I'd surprised myself by voting against and she said she had too - I hope she's still on the electoral roll from before she moved to Auckland !

After the AGM we had a very late fast-food lunch , then popped into the Chalet (the ball venue) so Noah and I could have a peep at the decorations. Noah was restrained from touching the disco lights, came home and watched Lily and Hannah get their clothes and make-up on and go to the pre-ball. Noah's behaviour continued to be really good and the two babysitters (we thought two was safer as everyone we'd usually use was at the ball) said both him and Isaac were no trouble

World Down Syndrome Day Ball photos

Jesus at a playdate

Last Sunday at church we heard a great sermon from Justin Duckworth. In a series on the Lords prayer - "your will be done on earth as in heaven" -he was talking about looking for God's kingdom when its already here under our noses. He told a story of being a tourist looking at a church in Paris, seeing a little girl begging outside and realising that the little girl was where Jesus was. He also told of a birthday party he'd attended after befriending a rather unlikable adolescent boy, it was only the boy, his foster parents and Justin at the party, but no, not just them said Justin, Jesus was there.
Our experience yesterday was like this. A ten year old boy from Noah's school came to play with Noah (a fair estimation of the time they actually played together would be 30 seconds!)
He is truly the most challenging child I've looked after and I have now a whole new appreciation of ADHD and encopresis (and admire still more the writer of the blog This work stinks) But he was so brave, trying to hold it all together, not hitting back when Isaac took his toy train and scratched him - even taking himself to our white box to try to control his anger. One of the first things I did when we got in the house was talk to him about the words on our wall which say 'safe' and 'calm' (apart from the times Hannah's friends make anagrams of them and see how long it takes me to notice!) and ask him where would be a good place to go if he needed to feel calm. He himself suggested sitting on the box in our playroom and it was amazing to see him turn away from throwing the wooden trainset, sit on the box and bite hard into Isaac's toy dog - OK the last bit wasn't part of the plan but seemed a pretty good substitute to biting Isaac to me.

After three hours with him I felt as though I had run a marathon - I mean physically exhausted -I've never actually run a marathon. When we took him home I told his mum how hard he had tried and how we had always got to the toilet in time. I asked if he was used to going out to play and she said this was the first time he'd ever been away from home. How sad is that?- a ten year old never going to play or going to a birthday party.
And then I thought Jesus was here and what a humbling thing that we were here too to experience it.

Isaac's busy day

Yesterday started with dropping Noah off at school very early (the special needs unit is so accommodating - when I said the alternative was taking him to the hospital with Issac and returning him to school at 11am they said bring him early and they'd let him play on the computer) and getting to the hospital for 8.30 with Isaac. Saw the orthoptist at about 8.45 and luckily didn't get asked "Are you patching his eye everyday like you're supposed to?"
What amazed me was how Isaac's behaviour regressed, We've had a long run without hospital appointments now and for about the first 3 minutes he was co-operative, then once he'd decided he didn't want to be there and I had to hold him down he reverted to his earlier hurting behaviour and started scratching, pinching and hitting me, It's so sad - I can see he's tried to tell me nicely he wants to stop and then when I insist we continue, what option does he have but to tell me again with his behaviour. Even when we'd left the hospital he took a while to calm down - a high pitched scream fairly often throughout my coffee shop visit and deliberately throwing his food and toys.

An hour and a half in the hospital seeing the orthoptist, the opthalmologist, the theatre nurse and having an ECG would be exhausting for anyone though. Even a mother not having the test might leave with a headache and a caffeine craving!

So Isaac needs four muscles per eye operated on - they will not touch the ones he already had surgery on when he was 8 months old. We had to be told cheerful things like he might go blind with the surgery, then talk with nurse who wanted to go for her break and didn't (and didn't want to) understand tube feeding buttons and their removal. Because the surgery is more major than they were expecting he can no longer have his grommets/ear tubes done at the same time - I so wish we hadn't waited on his grommets as I think his hearing is not great.

It was good after the hospital to be able to go to the opening of Palmerston North's new Plaza shopping centre - very white and shine and Australian like and a great chance to bump into everyone I know who had also decided to go to the opening. For a shopaholic like me these new shops are great news. Farmers (where Lily works) has relocated here to a lovely new store but I'm sure it will take Lily a long while to adapt. Also she will now be right next to a food court!

Isaac had his IEP in the afternoon which was a breeze really - its' amazing how much easier the pre-school years are. One teacher did ask if Isaac ate his vegetables and if we were worried his high calorie diet would be bad for his teeth. I though this showed a total lack of understanding of what we've gone through with getting him to feed but just said "I don't think its very good for his teeth but in the scheme of things his teeth matter less than his whole body and happiness"

We're in the midst of preparations for the Down syndrome ball too. While I was at the IEP Hannah kindly had Noah and he had to accompany her as they went round and picked up over $200 worth of purple and orange flowers kindly donated by local nurseries and being arranged for free by a floral art club. As well as displays for each table they are making 40 corsage/buttonholes for the kids with DS (and the zone 21 leaders and partners - at Hannah's request so she got one too!) apparently it takes 3/4 hour to make each one! We also heard yesterday that Pak n Save supermarket are going to donate all our soft drinks and that the Regent (our local theatre) is letting us use their big mirror ball for the dancing.

We're in for an exciting few days now as I was trying to explain to Noah on his way to school this morning.
Tonight a friend from school is coming to play - I got an idea this morning of how bad his ADHD is when the special needs teacher said "You're very brave" He is a delightful. very impulsive little boy (See if I'm still saying that tonight) who is overjoyed to have got an invitation to play.
Late tonight Beth will arrive from Auckland. On Saturday we're planning on our whole family and James' family go to lunch at the Coachman hotel where the wedding reception will be. Sunday is World DS day, church AGM and manic preparations for ball while calming Noah and Isaac so they're no trouble for the babysitters.
Wednesday, Thursday and Friday next week Noah goes on school camp accompanied by Paul, then when they come back - as I put it to Noah "Two little boys will be asleep in the pink bedroom" We are getting our first foster placement since J - two little boys aged 2 and 4 for respite just over the weekend!

Noah at school

It was Noah's IEP on Monday and because I sensed some behaviour issues at school I persuaded Paul to come along with me. Of course then it didn't turn into the battle I half expected. What became apparent is that his new teacher, special needs teacher and teacher aide are quite inexperienced and were happy to listen to some of our suggestions.
Things that were blatantly obvious to us like 'wait, use humour, give him some responsibility, make things part of a routine, give him warning of transitions' they were still feeling their way through.
You could see they didn't quite accept that we believe he doesn't behave vindictively and doesn't respond to consequences. They also didn't quite 'get' that as we also parent an adult with DS we have some idea of what really matters long-term. For example his special needs teacher spends a long time trying to get him to write by hand which he finds very hard. I suggested they teach him with predictive texting which is how most of Lily's friends communicate but that's too far from normal writing for them to consider.
A compromise however is bringing in the "clicker' programme on the computer (this has been in the last few IEPs but I think may happen now)
I left the IEP feeling quite good that the school is now finding Noah harder to manage than we do at home, whereas last year when the behaviour therapist was visiting us, the school told her he had no issues.
I think it just shows how Noah reacts to the personality (especially calmness and humour) of who ever is dealing with him. It's interesting that he was much better behaved today when the rest of his class went on camp and he had to go back into his class from last year.

So with Noah's IEP out the way, tomorrow is Isaac's!
At his last one I remember having a long moan about how hard it is having a child who doesn't eat and how academic stuff just doesn't matter compared to that. It will be interesting to see if they've seen the same wonderful changes I have in Isaac since his surgery in December now that he's managing his own eating and not in pain.

dancing at a 21st birthday party

We all had a great time on Saturday night at the 21st birthday party of Lily's boyfriend.
It's quite unusual for anyone to dare to invite our two boys anywhere so was really special just to all be going out together.
We told Noah he needed to behave like a grown up and he wore his suit and was just wonderful. He stood with his hands at his side looking at all the (lots and lots) of wires by the sound system, lap top and data projector then moving his head around as he traced their pathways with his eyes but he didn't touch.
He went out with Paul to the men's toilets decided "the hole wasn't right" so wouldn't use them - Noah has a very odd attitude to toilets almost a phobia and we can't often see what makes a toilet usable or not for Noah - he especially hates aeroplane toilets, American toilets (those that flush lots of water upwards) and those at Auckland airport. Later when I could tell he really needed the toilet I asked if he could be very brave or else go home and he choose to use the toilets!
He sat quietly through the speeches, telling me "I think this is a talking show and I will be quiet." I found it moving hearing the parents sharing their first thoughts on learning their new born son had Down syndrome and now how proud they are of him

And as for the dancing - Noah danced and danced - He is so lucky to know these older kids with DS and be included by them.
Isaac joined in too, he was amazing spinning round and round. These two little clips give an idea of how much the two boys enjoyed it.

Down syndrome ball

I've got an unexpected day at home today as I've suddenly developed a crazy allergic reaction with swollen face, itchy eyes and streaming nose. It was reassuring to look back over my blog and discover that on 24th Feb last year I posted that exactly the same thing had happened. I must be allergic to some particular pollen or grass but when I looked on the Internet it seems a bit out of season for anything.
So I've taken an anti-histamine and decided to stay in with the doors shut and the air-conditioning on.
Hannah is working like crazy on the programme for the ball to celebrate DS we're holding on World Down syndrome day (March 21st - day 21 of month 3 for the 3 chromosome 21s in DS) We had given a deadline of March 1st for replies. By then we had 27 people who had replied and paid and we needed a minimum of 50 to hold the ball, knowing how late people leave things we decided to go ahead anyway and now have more than 100 people coming -30 of them with Down syndrome or another intellectual disability. The programme has a photo and short profile of these 30 people and it makes amazing reading - probably scientifically proves that people with DS like High school Musical?!? Certainly it shows that people with DS all have their own individual personality.
We are now getting lots of buy-in from the community too, mainly thanks to Hannah and her friend going round all the shops. We've had gifts to put in goodie bags, spot prizes and decorations donated. A music band from a local high school is going to play free of charge.
Last night I asked a friend at our home group who likes flower arranging if she could do anything. She has now got purple and orange (NZDSA colours) flowers donated from two nurseries and her flower arranging group are going to make table centrepieces, big displays for the room and corsages for each of the kids with DS attending.
It's suddenly become quite exciting. Beth and James are coming down from Auckland for the ball (and also to say goodbye to us before they go to Australia).
Tomorrow we get to choose the menu which the caterer has kindly discounted from over $40 down to $30 a head. We are tryigng to get some media coverage too as it's quite a big deal for some of the kids who've never been to a ball before and are hiring Tuxedos and the like.

Isaac's first ice-cream

A lovely first for Isaac - I dared to buy him an ice-cream cone and he sat and fed himself. After a few minutes he got cross and waved the cone from side to side so the ice-cream fell off and I ended up crawling round the floor of the shop before it melted everywhere.
Our camera is broken but I did take a photo on my phone, unfortunately I don't know how to connect it to the computer but will post the picture when I find out how!

Noah decided to delay delay delay over getting up this morning. In the end I said "You can choose to lie here and rest on your bed or have breakfast" He wouldn't put on his shoes so I just put them in his school bag.
Hannah said she'd drive him to school as a treat (instead of walking with me as he usually does). When it was time to go he still hadn't come downstairs but feeling guilty about lack of breakfast I said he could eat a slice of bread in the car.
He was leaving with Hannah looking very grumpy, so I said "bye Noah I love you" He replied "I love you too mum, but sometimes I hate you."
Hannah said that in the car she'd said "Sometimes you get very cross" and he'd said "But sometimes mum gets very cross with me" - I thought I'd been very calm this morning, it shows how many vibes Noah picks up, and how honest he is.

behaviour up and down

Isaac's behaviour therapist visited the other day and I spent most of the time telling her about Lily's behaviour so she decided that in our house she really needs to work out some sort of programme around all three of our children with Down syndrome.

Isaac's behaviour has improved immensely and I am realising more and more how great an impact medical issues especially pain have on behaviour. They can be a cause of attachment disorder - after all a child can't distinguish between pain caused by parents and that from reflux and stays in hospital can be major seperations.
It has made so much difference now that Isaac is in control of his own eating. I still worry quite a lot about his eating - especially his low fluid intake and lack of iron and calories. The whole essence of the Graz programme though is for me to back off and let him decide when and what to eat and it seems the more I can do this the better he is. I don't think the speech language therapists here have been trained along the same lines though - his SLT has just come up with more ideas about encouraging his eating and drinking with rewards, which does not fit at all with the Graz ideas.
Yesterday and today Isaac has started feeding himself with a spoon again (for the last few months he's just waited for us to spoon food into him) he hasn't pushed his dish onto the floor either , so maybe the difficult eating behaviours are beginning to ease. The behaviour therapist had suggested that we don't present him with situations that he finds difficult - like putting more than one piece of food in front of him or leaving his dish on the table - instead we operate within his comfort zone and let him choose when to progress (a lot like the Graz theory really). This all seems to be working for Isaac and he is a different child to that poor little boy who was in so much pain just before Christmas and would so easily hit out at people.
He can now tolerate a tiny amount of stress and lets people come quite close for a short while without hitting out. He's giving many more hugs and cuddles to Paul and I and is much happier all round. It has actually become a joy to watch him develop and busily move around playing with anything that catches his eye.

With Noah too, I'm having to change my natural ideas about discipline. I now accept that he rarely (much more rarely than most children) misbehaves on purpose - it is usually that he is overwhelmed by a situation, has misunderstood what's needed or is so caught up in something he wants to do that he can't be distracted from it. He also does not learn from consequences - all he remembers from them is that I (or his school teacher or whoever) was mean to him.
This means that we need to control his environment as much as possible, keeping it safe and calm with lots of routines and few unexpected changes and when things go wrong what works best is for me to maintain my calm (unfortunately this really goes against the grain for short-tempered me) try to calm him and lead him through what I need him to do.
This means I have to sometimes do things like put his shoes on for him or stand and wait while he walks along at his own pace- even when I feel people are watching thinking "What a spoilt little boy"

It is hard when almost all parenting ideas are based on children of normal intellect with normal brains (as well as DS, Noah has brain damage from oxygen lack at birth and infantile spasms) who want to please their parents and are quick to learn from consequences.

There are a few different kind of books though and I've just got one from amazon called connected parenting. I also like the explosive child and the connected child (meant for adopted children but still useful) although I can hardly say 'I like' as it challenges so many of my ideas 'I try to read with an open mind and learn from' Beyond consequences logic and control.

It is Lily who I'm finding the hardest to deal with at the moment -here's an example - On Monday we had a talk with her about how she didn't have enough money to go out with her friends to the movies but instead they could all come here for the afternoon. Then she isn't home or contactable by phone until more than two hours after I expected her. Turns out she phoned her boyfriend (once I was out the way and wouldn't overhear) to say her bedroom was too untidy for him to come round here so they should go to the movies instead. She spent all the money she knew she needed for the next day and then saw a playstation game she wanted so paid for that with her bank card.

I'm not sure why it's so hard with Lily, after all we are proud of her independence and yet are aware she has limitations. I somehow can't connect all this hard learned stuff from Noah to her - it seems as though now she's 21 we're just tired of disciplining her as a child. I expect her to behave as an adult, have some impulse control and maintain personal hygiene and time keeping because she needs to not just because we tell her too. All of these just don't seem to be possible for her. Sometimes too I think it is laziness on my part - I don't want to hold all he money and just give her what she needs each day, I don't want to have to remove the leads from her playstation each evening, I don't want to have to be out of bed myself to get her up each morning.

Sorry about the long moan, it shows how our kids always keep life interesting though and force me to keep reevaluating my ideas.