Monday, July 28, 2008
I also met a lovely lady who has fostered 71 children and is still smiling!
When I got back it was still just about light so we went to Feilding to see our old house on its new site, it looks quite big there.
We also visited the old site which has now been cleared. Someone was there in a van gathering wood while his son played in the playhouse. Paul went over to say it was quite alright to take the wood as the site clearers couldn't put it in the dump they use - only to find the guy was not actually taking wood but delivering it - it was the pegs that will mark out where our concrete block should go - so it looks like we should soon have some progress on our new house!
Lily went with Sam to see the new Batman movie on Sunday so there was only Paul and Noah for lunch (J was feeling unwell and didn't want to eat) so they ended up having fishfingers and beans for Sunday Lunch. Paul said Joe did send a text to ask about coming but when Paul texted back what was on the menu Joe didn't reply!
Friday, July 25, 2008
Tuesday was the physio who managed to repair Isaac's standing frame (Noah pulled this apart as one early morning activity and when Paul tried to put it back together he managed about 25 different nuts and bolts but there were 5 pieces left over and the knee supports sagged forwards and the whole frame gradually squashed under Issac's weight)
Isaac showed off how he could stand up from the floor and she was most impressed and will order orthopedic supports to go in his shoes.
Wednesday was the eating clinic which was cancelled then the dentist in the afternoon. She said Isaac has a congenital absence of two of his incisor teeth at the bottom making the canines prominent which is why his teeth look like sharks teeth. She says the teeth look healthy though which is great as we can't get a toothbrush in to brush them because of his issues with things in his mouth.
Thursday was ABCD therapy group (Aiming for the Best for Children with Down Syndrome) Isaac is among the oldest there now - there are two 1 year old girls, a one year old boy and a 6 month old boy (who's mum had driven for over 2 hours to get there). This was a great place for Isaac to show off his new standing skill - although continuing to do it even through music time wasn't so great.
Today the Speech language therapist and early intervention teacher visited, followed by the home care nurse. everyone is impressed by his progress, even though he still has not managed to get back up to the 11kg he once weighed.
Isaac is certainly much more interested in things now and you can't leave him alone for long . He proved this when I heard him in the kitchen - I went to see and found a boy stuck in our island unit while everything that had been on the unit was on the floor!
Isaac stuck in the kitchen island unit!
Isaac also enjoyed the birthday party Noah went too, as lots of the older boys played High 5 with him. These kids are so natural at including children with special needs, most of them are "buddies" for Noah or others with special needs.
centre of attention playing Hi 5 with Noah's classmates
Noah enjoyed the bowling and was cheered by all around him - he was also very keen on all the racing car arcade games that were there too. Noah and Isaac wore their matching tops that I bought from Disneyland Paris.
Wednesday, July 23, 2008
Tuesday, July 22, 2008
I think most of the kids with special needs have been invited - they are going ten pin bowling and having pizza on Friday after school.
Noah hasn't been bowling before but I think they can put up buffers along the side of the alley and a slope that you can roll the ball down - this means that the most disabled children just have to lift their hand off the ball to play.
D is one of the severely disabled children - he doesn't walk or talk and I don't think I've even seen him smile or look at things. He does like shaking things though.
I found it hard to think of a suitable birthday present that isn't too babyish, but shopping this morning I found a Little Tikes hammer designed for pre-schoolers that has a nobbly rubber handle and makes woodwork noises when you shake it. I think Noah will like it too - I hope I can persude him to give it to D.
Monday, July 21, 2008
Saturday, July 19, 2008
We enjoyed the Down syndrome “Oscars”. Hannah and Diana had gone to a lot of trouble decorating the tables, and thinking up categories so each teenager got an award. There were categories for best basketball move, best smile, best lifeguard (I didn’t quite understand this as there didn’t seem to be a swimming scene in the film but the kids had no problem!), best dance moves and Lily got best celebrity as she’d been in the newspaper.
Some of the parents had dressed up for the occasion and were able to supply applause for all the Oscar acceptance speeches. These were very similar to a genuine acceptance speech as they tended to go “I’d like to thank my mum and dad …”
Although some of the kids had very poor speech which we couldn’t understand, all but one managed to say something even if it was only the name of their favourite movie.
J had a great time helping clear the tables and getting praised for her help and being complimented on her beautiful new dress.
Noah ran around a bit and tried to copy the Oscar nomination speech up on the stage afterwards. I brought out his Christmas tree decoration to calm him down. This is a silky red tassel he can run through his fingers – I keep it in my bag and it only comes out when he sits still. We made a prompt getaway after the desserts as it was well past bedtime and Noah was fast approaching his best before date.
three matching children just before we left
Friday, July 18, 2008
Last meeting Hannah (who is one of the group leaders) used our video camera to film all the kids acting High School Musical, and tonight all the families have been invited to go in formal dress for a sit down meal to watch the film they made and see the kids get their Oscars for taking part.
This has become really important news inour house as we told the little ones they could come if they behaved like grown-ups.
Now with half an hour to go, Hannah is off decorating the church hall, our food contribution is cooking - we have made a chocolate cake which says Oscar night in white icing and has a model oscarstanding on it saying hollywood best sweetheart, which Lily was given by Alex back in Auckland, there are roast potatoes and a casserole which I hop ewill be ready in time.
The kids clothes are laid out on the beds in Lily's room, bridesmaid dress for Lily, matching deep red trousers and tops for the boys and a brand new party dress for J.
Lovely to be able to buy her something I really like, we had a bit of "Ugly" at first then she seemed to decide that actually she'd like something to dress up in.
Just about time to get dressed and go now, I'll try to get some photos to post tomorrow.
Thursday, July 17, 2008
Monday, July 14, 2008
It’s a great photo and article (although I'm not a psychaitrist as it says!), so I’ve copied it all here apart from the bit that explains what Down syndrome is – I think you all know that!
The writing on the photo is where Lily took it to church and got people to write their congratulations on it for her!
Lily has her heart set on ‘a proper job’
When Lily Harper gets to heaven she’s got a few questions for God.
“Why did you make me short? That’s the number one question.”
Second, why does God create people with Down syndrome?
Lily, 19, in her final year at Awatapu College is one of three Harper siblings with Down syndrome.
While aware she faces challenges in her daily life, Lily is no moaning minnie and is “proud to be me”.
She also has faith.
I love God, he’s pretty cool ‘cause he made all of us and the light.”
She enjoys learning and says school’s more important to her than other people as she has more to learn.
“I really love school and I don’t know why we have holidays as I get upset ….school’s gone.”
Her favourite subject is drama and one day she hopes to make a movie or appear on stage. She’s already had filming experience, featuring on TV One’s Attitude programme last month.
A great Harry Potter fan, at school Lily is acting in a scene from one of JK Rowling’s books and has appeared in an Awatapu Stage challenge entry.
“I’m really obsessed over Harry Potter.”
Lily knows soon she’ll have to make decisions about her future, but is adamant she wants a “proper job”. She floats the idea of moving to Auckland, “so I cna chill out, go to Nandos (favourite restaurant)”, but then decides she wants to attend All Saint’s Anglican Church for the rest of her life.
Through Awatupu, Lily works at farmers unpacking lingerie, at a kindergarten and at a hotel as a housekeeper.
Born in the UK, Lily was adopted by Paul and Angela Harper when she was small. The Harper’s, a haematologist and a psychiatrist respectively already had children of their own, but wanted to make a difference. Lily was 9 when the family moved to New Zealand. Noah, 8, the Harper’s biological child has Down syndrome and the couple later adopted Isaac, also with the syndrome who is now 2.
Lily says “heaps of people” call her “handicapped”.
“I just hate it when they say that.”
She says her shortness is really annoying especially when opponents kick the soccer ball over her head.
“I just can’t believe it when they do that.”
Her goal before she leaves school is to be able to read a bit.
A great conversationalist who quickly put this reporter at ease, Lily has always been able to read people well, Mrs. Harper says.
The Harpers are members of the Palmerston North based New Zealand Down Syndrome Association. It has received $13,930 from Sovereign Sunshine for a project that aims to help young people with the syndrome plan for the transition from school.
Mrs Harper says the project will give Lily the opportunity to meet other young people, share ideas, and to think through her options.
Sunday, July 13, 2008
We tried to persuade Lily that most 19 year olds don’t play dress up. In the end she just wore a pirate hat, but when it came to the judging of “Best Dressed Pirate” she somehow got included in the prize giving and got a sword.
It was a great child friendly display with treasure chests and pirate ship to pose by. Caroline (my sister) and Bret and kids came up from Wellington and arrived just in time for the give aways, but just as Noah was reaching his ‘best before date’. He calmed down a little when I took him into the quiet room to colour in a pirate picture and make an eye patch. I think in total we only lost him 3 times and never ended up needing to ask the museum staff for help – so a fairly successful day out.
The children all came back here and collected a lot of mud over their clothes in the back garden. They left once noise and untidiness levels reached a critical point and we bathed Noah and J who soon calmed down.
Saturday, July 12, 2008
Lily had her work experience at Farmers in the morning so she waited in town for us. J had an access visit, so it was just me and the two little boys to get into town. The buses are free this week, but that means they’re so crowded that it would be hard to cope on them with a pushchair, so we walked.
I phoned Lily and the conversation went something like “Do you know how to get to Burger King and meet us there?”
“Do you know where the theatre is?”
We ended up meeting Lily at the library – there is a great teenage section downstairs where she can read magazines and watch DVDs – and we were quite impressed she managed to find her own way there (although she told me later she had bumped into a friend who walked there with her!)
Lily treated us to lunch at a Cambodian restaurant we’ve been meaning to go to for a while. Main courses cost only $9 each. Lily had satay chicken, I had chilli beef and Noah who didn’t like the look of any of the dishes with rice (their menu was great for kids as it had photos of each item) chose spring rolls. We had to persuade Noah to eat by saying his rolls looked like Christmas presents – he then bit the ends off to see what was inside, but wasn’t very impressed with what he found!
Lily asked for chopsticks and Noah then had a go with them too – I wish I’d had the camera.
The Goldilocks show was very good considering it was by school children. It was done like a pantomime encouraging the kids to call out – Isaac finally got the idea a bit later than everyone else, so they’d be back to a bit of quiet dialogue and Isaac would shout! After the show the kids were invited up on stage to dance – Lily was delighted as I said she could go to look after Noah – it was a show for pre-schoolers really not 19 year olds! Then they met the cast and Lily got her programme autographed “love from Mother Bear.”
Thursday, July 10, 2008
Let's hope it helps his behaviour through the day.
We need a quiet day as J is still feeling miserable so the kids are watching the making of Jurassic Park. Noah is watching with his new dinosaur which doesn't scare him so much now.
Isaac has to be put on the settee to watch as he is attached to his feed pump - we have a drip stand to follow him around with, but still finds he crawls away too far and fast and risks pulling his button out unless we contain him somewhere.
He isn't very interested in dinosaurs!
Wednesday, July 9, 2008
It turned into quite a nice day actually with Paul having this unexpected time at home. He managed to sort out lots of tax forms and the like which had been waiting a while and we finally took all thebags of jumble to the Salvation Army shop.
We persuaded Hannah to babysit for few hours - she wasn't that keen at first - cross at having dragged herself out of bed early to get to our house for 7am expecting to be able to go shopping in Wellington with her friend.
Noah plucked up the courage to buy a dinosaur toy with his birthday money from grandma and grandad - he has looked at them on three occasions before and thought abouut buying one, but when he presses the button to make it roar he becomes quite scared! Today we ended up taking the new T-Rex to a restaurant with us, where it had its own chair and tried not to eat Noah's chips!
Now Lily and Noah are rewatching Jurrasic Park (J is flat out in bed, poor thing) making the toy dinosaur roar whnever a dinosaur appears in the film. We had take-away pizza as a treat but Lily suprised us by quickly saying she was full - I hope she's not getting the bug.
Tuesday, July 8, 2008
Monday, July 7, 2008
Still it means Lily will now have a pair and a spare which is all to the good.
Sunday, July 6, 2008
the weather was so appauling we though we might not make it, but by 11am things were improving so we bravely went. for the first time ever we saw snow on our nearby mountains and it was snow rather than rain on the windscreen.
Fantasy cave cost $4 for adults and $1 for children - one of the last great bargains for a family day out! It is like an old-fashioned visit to see Santa with lots of loving made but rather dated displays of nursery rhymes and fairy tales and lots of lovely volunteer old people who call themselves cave dwellers explaining everything.
On the way back we stopped at the cheesecake shop in Woodville that has been often recommended we got four delicious cheescakes, lemon, chocolate, banofee and rhubarb custard YUM
On the way back Paul dropped me and Lily and J at the shops, we found the only item of clothing in Pumpkin Patch that both J and I liked - a cute pink tartan skirt. She likes what I consider disco clothes and I like what she considers old-fashioned ugly clothes, so it was a great achievement. we also bought a pale pink skivvy (polo neck jumper) and tights to match but J was not so keen on these.
Then I said she could have extra pocket money for the holidays if she spent it on a toy rather than clothes or electronics - again being rather old-fashioned I think 6 years olds should be playing with dolls rather than fashion conscious. She bought her first Bratz doll. We also looked for a 100 piece puzzle as most of our jigsaws ar etoo easy for J - she was delighted that the only one in k-mart was of Hannah Montana!
Lily found some reduced glasses frames and it only cost her $370 instead of the usual $700 for a new pair of glasses.
We also bought the dvd of jurassic Park for a family movie night - can it be right that this is almost 20 years old? Great movie and good to have J creep up to me for a cuddle saying "I'm not scared it's just warmer here."
Saturday, July 5, 2008
Friday, July 4, 2008
I thought I was so clever putting Isaac in the bath as I tried to recreate some of the ideas from Isaac's play picnic playgroup which are based on the ideas from the Graz feeding clinic in Austria.
Lots of small dishes of food and no pressure to eat.
this is the before photo - although the red dish of banana custard has already been turned over
the after photo would have looked rather like the one below which is Noah half way through eatign a slice of his birthday cake on the phone to grandma!
I also ended up putting a “Little Mermaid” costume in to her school bag just in case all the other children are wearing actual book linked costumes and J feels left out. This is totally for my benefit really – I bought J this mermaid dress on my recent trip to Disneyland Paris (she’d told me Ariel was her favourite Disney princess) but she has proclaimed it “Ugly” has never played in it and wouldn’t even wear it to Noah’s Pirates and Mermaids party, instead saying we could give it to R -another of the children coming. In the end we lent it to R who looked lovely if I say so myself!
So I don’t expect J to wear it but at least I feel a little better putting it in.
Noah’s special needs teacher is about to leave for 18 months in the UK so today is her last day at school. Noah signed his name beautifully on a card for her which he gave her when we got to school, but then he said he’d like to give a card to one of the other teacher aides too who isn’t leaving! Noah is very thoughtful about his teachers, when we took in some chocolate coins for his class on his birthday I said “These are for all the children in room 3” (his mainstream class) and he replied “and for all the adults in Room 9” (his special needs class)
Thursday, July 3, 2008
We don’t want to lock him in his room, so have tried to bobby trap the doorway putting Isaac’s pushchair with its brakes on across the door with some toy blocks on it that should clatter to the floor if he moves it.
Paul insists that he is the lightest sleeper and will wake up to this, but last night at 1.20 it was me who woke up to find Noah had crept past the pushchair and was in the process of turning on every light in the house. He went back to bed readily enough and slept until 6.30 when he called us to come and get him – a fantastic first – we tell him he must not get out of bed himself but call to us.
Meanwhile Isaac had woken with reflux and started crying. We’ve moved him into our room so he won’t wake Noah so now he keeps us awake instead. We’ve learnt that when he’s in pain like this we just have to wait it out, it doesn’t improve matters bringing him into our bed. I was too tired last night to get him out anyway. He stopped crying after about half an hour and the good news was he was then so tired he slept through the alarm and Noah’s arrival in our room.
Lily and J are absolute sleeping beauties. We wake them when we get up to shower around 7.00 and then have to remind them about 3 times before they emerge. When I suggest that Lily should go to bed earlier she says “That’s not why I want to stay in bed, it’s that I want to finish my dreams!”
Many minor control battles with J this morning – I know this is great progress compared to the over compliant timid little mouse she was the first 6 weeks she was with us but sometimes I could do without them. Her school shoes which she dislikes so much, had mysteriously disappeared – Paul saw them under her bed when he was looking for Lily’s glasses last night but she couldn’t find them anywhere this morning.
Good to have them all off to school and a bit of peace and quiet while Isaac watches “In the Night Garden.”
Wednesday, July 2, 2008
Needless to say this time all her shoes have been searched and tonight Paul decided to join the search. Loads of interesting stuff plus rubbish and dirty washing has been found under her bed but no glasses. Lily has enough money in her account to buy a new pair from the disability benefit she gets each week, but how do we make her understand how expensive they are and how do we get her to take better care? I never loose my glasses - well only when Isaac reaches out for them from his cot which is right next to my side of the bed.
Have also been driven mad trying to keep our six year old foster daughter J and Noah entertained after school, preferably in different rooms, start making trainset with Noah in one room then playing princess lego in the other until J says she does want Noah playing with her but it seems only to be so she can snatch lego away from him!
Noah decided to play a computer game he was given for his birthday but managed to change the whole resolution of the computer.
I have been reading this great book the connected child about caring for adopted and special needs children and keep vowing to become this slow to anger nuturing parent but it doesn;t seem to be happening!
Most recently we've had Noah's 9th birthday and our old house has been moved off our site ready to start building our new house - can;t come quickly enough.
Isaac went to his "messy food play" group at the hospital this morning. He objects to having to keep the food on a plastic mat and managed to get chocolate mousse on the radiator and garlic dip all over me, unfortunately he managed to get very little into his mouth and didn"t swallow any.
still the SLT thought it was good that he was letting food into his mouth and bringing his feeder cup to his mouth, he has to be applauded after each try and leads the clapping himself!