Paul's dad. Isaac's EEG

Paul's dad has been in hospital for the last week and a half with a chest infection and a small stroke. Until then he'd been very healthy for an 86 year old.
It's hard being half a world away when something like this happens, although it does give you a bit of leverage on the phone. During one phone call to the hospital Paul asked if he could speak to a doctor and was told he'd have to make an appointment but if he could turn up on the ward in half an hour he could see one. He said that would be a bit difficult as he was phoning from NZ and it was 11.30 at night here. Saying you're phoning from NZ seems to get people scuttling around in amazement (although we actually pay less for calls to UK then just to phone the South Island of NZ!) and they managed to find a doctor immediately!
Paul's dad has been moved to the stroke unit now and sounds like he's doing pretty well. Paul has been fortunate enough to be able to add on a trip to the UK to his flights to a conference in Boston during the July school holidays and will get to visit his parents for 3 days then.


Today was Isaac's EEG. On the way to the hospital I realised I was feeling quite anxious and then realised it was bringing back memories of nearly ten years ago when Noah had an EEG and we discovered he had infantile spasms. We also had a second time in the EEG department with Noah - memories of which I have managed to almost block altogether - when we were accompanied by a nurse with resuscitation equipment and they thought Noah was in status epilepticus.

Isaac has possible absence seizures. These are much less scary than infantile spasms I reminded myself. The whole procedure turned out to be less scary too. The hardest bit was probably getting into the hospital through the hand washing police who monitor the only entrance that is open - there is an outbreak of gastroenteritis in the hospital, visiting is banned and everyone has to wash hands with alcohol rub on the way in and out, and there's another trolley of hand wash in outpatients.

The EEG room is now a small comfortable room well stocked with toys - In the old hospital with Noah the previous room seemed draughtier and more concrete like - like a set from a Frankenstein film (although this may have more to do with the diagnosis we got then reality!)
It was a bit harder getting 20 electrodes on Isaac's head than it had been Noah's, Isaac managed to pull about 10 off with one grab until I perfected the art of holding him rigidly by the upper arms leaving a minimal amount of movement so his hands could manipulate toys - Noah on the other hand had been so knocked off by the infantile spasm that he just lay there.
Once the electrodes were all connected up to the machine Isaac was monitored for about 30 minutes and showed none of his funny eye movements during that time. The technician didn't seem concerned by the reading at all so my guess is that we'll hear from the paediatrician in due course that it's normal.
Another positive change from Noah's EEG is that they now use a water soluble glue to put on the electrodes which just shampooed out of Isaac's hair tonight - with Noah we had to use nail varnish remover and he was still left with sticky white patches in his hair.

Clever Isaac

It's easy to treat Isaac like a little baby as he is so small, but from time to time he does something new and I begin to realise he is growing up.
On Friday we went to the new "Mainly music" group our church has started. Isaac did go to a group before and it was four weeks before he would even take part. However numbers at this group were so small (just Isaac at the start although 4 other little girls turned up later) that he joined in quite a bit even copying the sign for quiet (shhh) although a lot later than everyone else.
Then this morning when the alarm on his feed pump went off, he reached his hand out of his cot to try to turn the pump off! He didn't manage to (We have to ask Noah if we want that done) but it shows Isaac does pay some attention to what's going on around him.
This evening they had a disco organised by the Sunday school at church (with quite a high proportion of children with special needs) and Isaac started off hating the noise and being quite clingy but gradually really joined in and started trying to jump - basically stamping one foot on the floor. He played with lots of different kids who are all really good at including him and looking after him.

"I hate your humming"

Noah often shouts at me on the way home from school "I hate your humming". Often I'm not even aware I was humming, but my daughters assure me I hum all the time. They say that in public toilets they can always work out which toilet I'm in by the humming.
I was saying to Noah that maybe instead of really drawing attention to me by shouting he could use a code word to let me know I'm humming. Noah has recently watched the film 'chicken little' and for some reason has chosen the code phrase "a piece of the sky" (which I think is from this film).
Over the past weekend even Paul heard "a piece of the sky" many times -I think he has caught my habit.

Today we are hoping for a new way of curing the humming habit. It's my birthday and I got an I-Pod. I am not exactly technology literate and Hannah has spent a lot of time showing me how short-tempered she can be when I ask her advice on using I-tunes. (Let me immediately say she has also been very very kind today and looked after Isaac for a long time and taken him to Kindy so I can have my hair done)
Hannah transferred a bit of music from the computer and I listened to it as I walked to town. Unfortunately I didn't know how to work the volume so it rather blared into my ears. I also didn't know how to change songs so soon discovered that old gospel favourites don't provide a very good rhythm for walking!

It did stop me humming but when no-one was close I did give into the urge to sing along very loudly!

Lily newspaper star again!!

Lily is pleased her fame continues and she was in our local free newspaper, the Tribune again. She was in the paper last year with the headline "Lily wants a proper job" so this follow up was to say she now has a proper job, working at Farmer's department store.

Lily has this unusual charm - and the newspaper editor (who interviewed her) ended up getting Lily some free tickets to our local theatre Centrepoint - it is apparently a very unusual thing to happen.

Lily was delighted when the vicar announced the article at the end of yesterday's service - in fact so delighted she had to turn around and wave to her fans!! It was also lovely that the manager of Farmer's was among the congregation and could also be acknowledged for his part in this.

For any fond relatives reading this (especially those two who are referred to when Lily says she's aware not everyone has a job!), this is what the article said

"Dreams do come true - not just in Hollywood but in a Palmerston North storeroom.

Tribune readers met Lily Harper last year when she shared her heart was set on "a proper job" when she left Awatapu College.

By proper Miss Harper meant paid. Getting a job is a big enough challenge for any school leaver, but the Palmerston North 20-year old has Down syndrome. It's a life-long condition that causes delays in learning and development.

As part of Awatapu's transition programme, Miss Harper did work experience at farmers, an opportunity arranged by Phoenix Inc Supported Employment.

Since February, she's been on the Farmers payroll, working 10 hours a week spread over three mornings. Her primary role is unpacking lingerie.

"It's as pretty cool job" Miss Harper says. "It's pretty amazing having Farmers as a job."

She's aware that not everyone who wants a job has one.

"I feel sorry for them, that I have a job and they haven;t."

Providing Lily with support is Phoenix employment consultant Diana Cole.

"Sometimes I have ups and downs, but I have Diana to help me and it's going well and it's been really fun."

Ms Cole says Farmers has been accommodating about Miss Harper changing some of her hours to fit around everything else she does.

And that's a lot.

On Tuesday mornings she volunteers at Riverdale Kindergarten. She has difficulty reading, so makes up stories using pictures in books the children bring her or delves into her vast imagination.

Tuesday nights she attends Centrestage, a drama, music and dance class at the Dean Mckerras School of Dance.

At home Miss Harper acts out scenes by herself and with her brothers. Sometimes she films the performances on her cellphone. "It just comes out, drama, the acting bit. It makes me happy."

The English-born woman is a member of the High School Musical Group, an acting singing and dancing group for young adults with disabilities. It was founded this year by Palmerston North's Georgia Bergeson, who is now in Wellington preparing for her role in Starlight Express.

Then there's swimming, pumping weights at the gym, boxing and tennis on Wii (a video game console), Special Olympics and Down syndrome youth group Zone 21. She manages to fit in seeing her boyfriend Elliot, who also has Down syndrome. Miss Harper says Elliott is as good looking as High School Musical star Zac Efron.

The hit teen movie and Harry Potter pepper conversations with Miss Harper.

She's even named a narrow concrete staircase at Farmers "Hogwarts stairs" after the school of witchcraft and wizardry Harry attends because the stairs are "pretty twisty". "You can tell 'm a huge fan of Harry Potter."

One day she'd like to star in a movie of her own: "My real dream is to go to Hollywood."

Rachel's reawakend fostering memories

We got an interesting phone call from our daughter Rachel the other day. I don’t often blog about Rachel as we don’t see that much of her, but she came to us aged four and a half as her seventh placement including a disrupted adoption. We adopted her when she was 8 and she’s now nearly 22 living in Auckland with her boyfriend and ably supported by her boyfriend’s mother.

Anyway, two of Rachel’s five birth siblings are just about to come out to NZ from UK for a holiday with Rachel. This will be the first time she’s seen them in over eleven years. She had also just read on our blog the news of J leaving us, and these two events encouraged her to look back over her childhood and reread her life story book we made soon after her adoption.

Rachel said “I can still remember leaving Tracey’s you know. I can remember seeing my toys all packed into a bag and waiting, feeling sad to go with the social worker.” This parting happened when Rachel was four. What is amazing is that as a child and teenager Rachel had no recollection at all of this parting – it was so traumatic that she had blocked it out totally and instead believed we had stolen her from a home where she’d been happy. It is also interesting that it is Tracey’s name (Tracey was the teenage daughter of the house) she remembers rather than that of the adoptive parents.

Rachel then said “How come I have so much information about my childhood and my brother and sisters say they haven’t any?” I could only say then that it depended on how much each set of adoptive parents supported the idea of life story books.

We believe passionately that every child has a right to have as many memories of their past as possible and made Rachel a life story book using a photo album with those sticky kind of pages. If you opened it from one end it was her story written at a five year old’s level (with pictures she'd drawn and lots of photos) and from the other end it was the important bits I'd cut from the many reports on her and her family arranged chronologically.

We found it relatively easy when Rachel was first with us, to ask her social worker to get photos of her birth parents (OK these had to be taken with a telephoto lens without their permission but at least we got one) and of her previous foster carers. It was a little harder with the failed adoptive parents as they wouldn’t talk to the social worker, but I wrote them a carefully thought out letter telling them what Rachel remembered most fondly of her time with them and they sent Rachel a birthday card including a few photos. Their social worker kindly gave us a copy of the photo of them she had in their file.
The earliest photo we could find of Rachel herself was when she was two and a half years old and advertised in an adoption magazine, so we used a baby photo from a magazine and said she would have looked as beautiful as that baby.
The hardest stuff to read (for me at least – allegations by the children in childish language) and information that Rachel might not want to share with everyone we put in an envelope attached to the back of the book.

Rachel said she feels a bit ashamed of her history and wonders whether or not to discuss it with her visiting brother and sister.
I feel passionately here too. Their history is nothing for them to be ashamed of - it is a badge of courage that they have survived it and are now productive members of society. How could anyone feel anything but admiration for a little boy aged four who had the courage to tell his teachers that his bruises were due to his father hitting him, and for a four year old girl who tried to give baby Rachel the mothering she hadn’t even had herself!

I hope Rachel’s story can give hope to other foster and adoptive parents that life story books really matter and that years after the event memories can return and events be interpreted in a more realistic light.

Celebration or not?

Once J had left yesterday, we decided to go out for a meal as a family. First Hannah persuaded Paul to paint some wood for curtain holders for her bedroom - we have been here over 2 months now and still Hannah doesn't have curtains - we suggested she sleep in the room J had been using but the pretty pink princess canopy and bedcovers don't appeal. Then I tried to persuade Paul to mend the washing machine, but he wasn't able to do it in the ten minutes I gave him. Then he decided to apply online for the visa he needs to get into the USA for his Boston trip - this seemed to involve quite of lot of sighing and looking for passports etc plus wondering at the words which are not really words to us eg. expiration rather than expiry.
Anyway we finally got out to our favourite pizza restaurant (well actually wholly pizza is our favourite but is not open on Wednesday nights) Pompeii pizza, where we managed to demolish 2 colossus size pizzas between us (and a kids size just cheese one for Noah). The spicy Thai beef with cashew nuts is just wonderful.
We called it a celebration of being a small family again (rather than a celebration of J leaving!) although there were still 6 of us!
Then Paul and I weighed up spending time repairing the washing machine versus going to see "Last chance Harvey" and the movie won!! So we dashed home got the boys to bed and left Hannah babysitting while Paul and I sat and enjoyed Emma Thompson and Dustin Hoffman (we have just watched him again in "The Graduate" and it was amazing how similar his character and acting was in this).
Paul is now at a two day away clinic in Gisborne so I'm without a washing machine until the weekend!
Breakfast time was quite relaxed today without the usual rows and policing surrounding J. This afternoon I was pleased when the caregiver social worker visited and said J was with a very nice new caregiver.
We plan now to enjoy the break from fostering, have a school holiday with just our family and not resume fostering until after Lily's birthday trip to Disneyland.

Saying goodbye to J

I know I haven't posted much recently and this has been due mainly to the day by day dramas and talks with the social worker about J.
Having been approved as emergency and short term foster parents we were told that we'd have children for up to 6 months.
Fifteen months into a placement which is still open-ended legally and with deteriorating behaviour that impacts on the other kids, we made the hard decision to ask for J to be moved on. Today it finally all came together and half an hour ago she moved.
How strange that when foster children come to you and when they leave. you can see them so easily as hurt little children whereas in those weeks and months in between they so easily appear as clever adult manipulators and experts in psychological warfare.
We spent this weekend knowing J was moving on (although she didn't) and when she was the celebration child at our family Friday celebration, it was especially poignant as Paul blessed J. The blessing can serve as our goodbye to her;

Lord, I thank you for the blessing of J. I ask that You fill her with Your Holy Spirit and guide her footsteps. I ask that you guard her path. I ask that you build her character in Your likeness, in truth, honour and light. I ask that you remove fear from this child and fill her with Your Holy Spirit. Amen

Glasses and cousins

My sister and her three children visited on Sunday night, it was our first set of family visitors and the house swallowed us all nicely.

We went to the jazz service which was held at our church as part of the Palmerston North jazz festival and Caroline ended up sitting by our local MP who at 28 is one of the youngest in Parliament.

Noah and Isaac have both got their glasses, they are special frames for children with Down syndrome and fit fairly well. Noah can be bribed to wear his for short periods of time,

but Issac needs people to hold him down while he screams!

Noah had a swimming lesson yesterday - his teacher has the patience of a saint and lets him learn at his own snail like pace. Yesterday she asked the kids to float in the shape of an 'X' (arms and legs both wide open) then close their legs to make a 'Y' then close their arms too to make an 'I'

When it came to Noah's turn he told her he wanted to make a 'W'! Everyone at the poolside was laughing!

Queen's Birthday Honours

Today in NZ is Queen's birthday holiday - it seems a strange holiday to have here as it's not even celebrated in England, also it is neither the real nor official birthday of the Queen. I think it may be Queens Victoria's birthday or something.
Anyway it is the day that NZ honours are announced.
Four people in Palmerston North got honours and we know three of them - how's that for feeling part of the community.
Kevin O'Sullivan became a member of the NZ order of merit. He is a lovely man who lived just down the road from us when we first moved from UK to Palmerston. He was a lawyer and told me his LLB stood for "Lifelong love of the Bible" When I wanted to improve services for children with special needs he very graciously set up two trusts for me for free - the ABCD group (Aiming for the Best for Children with DS) which is still going strong (and I can still remember the buzz of the evening we started it with 22 people gathered in our front room) and the PANDAS trust (Palmerston North Development, assessment and support centre) which was to be a centre similar to Christchurch's Champion centre but unfortunately did not get off the ground.
Richard Isaacs also became a member of the NZ order of merit. He is one of Paul's colleagues -an oncologist with an interest in breast cancer who treated private patients with herceptin at cost value. He also entered this years coast to coast (the two day race) and was delighted so many people were cheering for him at the finish when he was suddenly overtaken by the winner of the one day race!
Lew Findlay got a Queen's service medal. He is a city councillor who does a lot of work with homeless and addicted people. It is his daughter Sarah who is Lily's IHC support worker and takes her to her drama class on Tuesday evening.