I've got a job, and I need your help.....please?

How many times have I mentioned the words 'I' 'want' and 'job' on various different blog posts and elsewhere?  Since 2008, I've applied for every suitable job I could find.  But somehow they all fell through.  Someone was always ill, or I messed up the interview, or I was too old, or any one of a million other reasons.

Well I've got a job now.. And after a gap of four years it's really quite scary.  And it's going to be a bit crazy as there is a major launch on Thursday.  Oops, that's tomorrow.

I'm going to be working from home with the team from Irish Autism Action and Hearts and Minds to  help UK children with autism, by promoting a scheme to convert old phones into new technology: it's the IAA iPad scheme going international!

The idea is very simple: collect old phones and exchange them for a new iPad or an iPod touch or even a laptop.

This hugely successful scheme has benefited more than 1000 families in Ireland as well as raising funds for the charity.

It all began with the iPod touch and the iPad and the realisation that these devices could transform the lives of children with special needs, and especially children with autism. As well as entertainment and education, these iDevices can be used for portable communications using Apps such as Grace.

But you don't need to have a child with autism to get involved as the scheme is open to all families and schools as well.

I am *hoping* that the scheme will be as successful in the UK, but I'm going to need lots of help.  And that's where you all come in.  I would really really appreciate some more likes and followers for the Facebook page, Hearts and Minds, and the twitter account @handmchallenge.  Prizes may be involved - details to follow - but only if you are a UK resident, over 18 and not a bot!

So now that I have a (very) part-time job, will I have time for a personal blog too?  Watch this space..

Feeling Better

I'm feeling better, so far anyway.  I just hope that typing this doesn't jinx my recovery from whatever unidentified and painful problem I've been swearing at for the past two weeks.

Finally today I got out in the good weather.  There was yet another meeting for one of my kids, but this time I went on the bike.

I dawdled and wobbled home, looking at houses and gardens and people and watching all the other cyclists swerve past me when I stopped at red traffic lights - I like to rebel.

And I enjoyed the sunshine and the breeze, even if my hair didn't.

This might be the last photograph of me in my 40s before the big 50 next month.  Note the blue T-shirt.  Worn with cut-off jeans and grey tennis shoes.  Not the white trousers, colourful tops and sparkly sandals combo that other women of my age were wearing in the sunshine.  Will I ever get the clothes thing right?  Or anything else?  Unlikely, somehow I suspect that I'll always be the one in the background, watching and wondering how everyone else manages.  How they seem to just know what to do, what to say and what to wear.  Sometimes that really bugs me, but today I'm feeling happy just the way I am.

My baby's gone to Africa!

I was in shock when she told me last year.  Africa?  I know she hasn't had many foreign holidays, but really could she not have picked somewhere familiar, like France?  All sorts of horrible thoughts swirled around my brain, from tropical diseases to danger and back again via creepy bugs and dirty water.

But no, Angel and three of her friends had decided to try and make a difference to the lives of children living in an orphanage in southern Africa, by spending a month as volunteers for an Irish charity that works in the area.  Everyone I spoke to told me that she would be fine, and gradually I realised that this trip is something to celebrate: my Angel is spreading her wings.

So began months of planning and fund-raising.  Bags were packed, mass-goers were begged, quiz junkies were entertained, injections were borne, respectable clothes were bought, and every last detail checked and rechecked.  I let her at it.  Her organisational skills have always been excellent.  And she is a grown up after all.

The flight left at six this morning.  She left at four.  I did not need an alarm to wake me.  We sat in the hall, yawning, in peaceful silence, waiting for her lift to the airport.  Everything had been said.  And with one last hug and a few whispered words, she stepped out into the dark, dragging the suitcases behind her.

When I came down this morning, there were two notes on the kitchen table, one for her brother and one for me.

"Please try not to worry," she wrote, and promised to get in touch when she could.

I think she's ready for this and I think she'll do just fine.  But roll on the end of June...

Sweat, tears, cursing and chocolate

It sat in the hall for two weeks.

Mocking me in its unboxed state.

Challenging me to open it and get started.

I'd known about the special offer for weeks, watched some stores sell out, brought the children to see it. They approved. I thought about what we have given up and the long summer holidays stretching ahead...even longer due to cutbacks in services for kids with special needs.

So eventually I raided the piggy bank.

It took two of us to bring it home and drag it into the hall, where it sat taking up the space where the kids normally dump their bags and shoes.

Finally I had a morning with only one appointment and I ran out of excuses.

Nervously I chopped at the heavy tape and peeked inside the lid.  There weren't too many bits.  I could get this built in a couple of hours, surely?  After all, I'm a flat pack veteran now.

But maybe lunch first.

Suitably fuelled, I sat down to inspect the instructions.  Which were clearly designed as a cryptic brain teaser.  Not good.

Guess work and common sense was required and a bit of help from Angel.  But then we realised we had done something wrong.  And it was dinner time.  After that life and appointments got in the way.  So it stayed, half built, for several days.

The guilt got to me in the end and today I grabbed my tools and got stuck in again.  And it was bad.  One Facebook friend described this job as the best way to torture a husband..... and after several hours of sweat, tears, cursing and chocolate I could understand why.

The shadows were growing longer and I was about to throw in the spanner when Angel came home, radiating instant calm and helping me with the final adjustments.

And LOOK what we made!

Of course I'm still pulling the grass out of my hair....

What does hungry feel like? And other food issues...

"What does hungry feel like?" asked my son this week.  Now you might be thinking how lucky he is that he has never felt real hunger, like so many children around the world.  And you would be right.  But there is a problem.  My aspie boy doesn't know when he hungry and these days he doesn't know when he is full either.

Video games are part of the cause.  He gets so engrossed that he will completely forget about meals and drinks until I remind him.  Yet he will tell me regularly that "breakfast is the most important meal of the day."  He repeats it like a mantra, but would not eat it at all unless reminded.

His seat at the breakfast table complete with Goats in Trees calendar in view

It all started out so well.  His creche had a healthy eating policy that meant fruit as snacks and the chance to try a variety of different foods, even curry!  He would impress supermarket customers as he sat in the trolley munching on a sprig of raw broccoli as we did the shopping.

Since then, much has changed!  I believe that unless you can keep your child in a bubble or only let them mingle with others whose parents have identical food policies to you, the broccoli-eating toddler is just a passing phase.

I don't know who started it, whether it was another child or TV or family members, but within a few years he would start to tell me that he didn't like my home cooking and now the only food he enjoys - with one exception - comes from packets, take-aways and fast food outlets.

Now his diet is quite limited, though the faddy eating does not seem to affect anything with chocolate in it!  Two things I am glad about though: he doesn't like the sensation of fizzy drinks and he still eats broccoli, as well as some other vegetables.  Remembering my own childhood and the difficulties I had with food, I don't stress about it too much.  Your child will sense it if you do, and then they are in control, and boy do they love that!  One day aspie boy should get through this phase and he is tall and he is healthy, so it can't be doing him much harm.

That is when he does actually eat though.

As soon as he started school I realised that he would go the whole day with no food or drink unless someone reminded him.  And of course his behaviour would deteriorate if he did ignore everything that I'd carefully packed for him.  As I write this he has been up for almost four hours, and it has not occurred to him that it might be time for breakfast - I am not starving my child though, as I did make him a hot chocolate earlier!  A number of reminders will be needed to make breakfast happen.  It's partly my own fault: he knows when everything has to happen during the school week as there are set times that are enforced, but I tend to let it slip at weekends.

It works the other way too.  He used to self-regulate, but not any more.  He will eat an entire family-sized pizza and not stop when he MUST be full.  And then look for Jaffa Cakes.

"Because I always have Jaffa Cakes after dinner, Mum."

Will he grow out of this too?  I'm not sure...

This post was written in conjunction with Special Saturday which aims to promote awareness of special needs. You can find Special Saturday on Facebook, on Twitter at @specialsat and via the hashtag #specialsaturday to link up. Code: N3GQENT7GKT8

Going to market

I would never have found it by accident.  I don't usually go wandering around industrial estates, and certainly not in search of yummy food, but perhaps I should start?

I'd heard about this market and paid a brief visit one Saturday with Smiley, but it just didn't work for me.  Saturdays are already crammed full of activities and I can't fit in any more.  So I was delighted when @brid_hsg announced on twitter that there would be a Wednesday market too.  Perfect timing, as I have been trying to fill this week with distractions : yesterday my Dad would have been 82, and I still miss him every day.  Blogging is helping to fill the gap.  It gives a new dimension to everyday activities, as I look at them and think about ways to turn them into (hopefully!) entertaining blog posts.  

I've always loved markets, more to potter around than for the weekly shop: the food is tempting and delicious, and often expensive.  However I love the chat and the tasting and the smells and the sights.  It makes me feel enthusiastic about food again, so different from the mildly depressing feeling that I get looking at the familiar pile of packets and tins and bags in my supermarket trolley.

Here's a *taste* of what I saw...and tried :)

Do you feel hungry now?

This is the haul I came home with: lunch, plus some delicious cheese and a jar of wonderful vegetable sauce for pasta, bread or couscous, which will be perfect for quick meals.  I will definitely be back.

Do you shop in farmer's markets?  What do you buy and why?

The Honest2Goodness market, which also has books, crafts and a cafe, is in the Glasnevin Industrial Estate in Dublin 11 and this is NOT a sponsored post!

Smiley goes to Casualty

She awoke in pain.  I knew this by the tightness of her mouth and the dull look in her eyes.  No early morning joyful smile today.  And then she wouldn't even eat breakfast until I'd dosed her with Nurofen.  Last week I mentioned the painful changes in her legs and this morning they seemed worse than ever.  Perhaps she was actually injured?  The earliest appointment that I had managed to organise with her orthopaedic surgeon was July and clearly an injury could not wait that long.  So once my son had left for school, Smiley and I headed for the local children's hospital.

They are always soo good to us.  It seemed only minutes before we were whisked through to the treatment room and given a bed, and later they organised coffee and toast for me, and mashed potato and a drink for Smiley.  The Doctor could see her screw up her face in pain when we lifted her legs so we were sent down to X-Ray for pictures of her tummy, hips, legs and knees.  The results came back clear apart from a slight curvature of the spine.  No bowel blockages, which was the problem last time we visited.  Then urine and blood samples were needed.  Both were quite a challenge as her veins are small and catching urine in a bowl from an active 15 year old on a hospital trolley is something I hope not to repeat too often!  But no problems showed up in these tests either.  Her temperature and blood pressure were also fine, so there was no indication of any medical problems at all.

The casualty doctor agreed with me that Smiley's pain is therefore probably cerebral palsy-related. She will be taking Nurofen regularly for the next while and perhaps a muscle relaxant like Baclofen too.

I'm glad that nothing serious was found, but also concerned that I have no answers.  Not yet anyway.  Because as I was about to leave the hospital my phone rang with news of a cancellation appointment with her orthopaedic surgeon in a couple of weeks time.  So hopefully this will all be sorted out soon.

The Schoolyard Queen and other friendship tales

You've met her.  She is always there a little early.  Not desperately early, not one of the mums that parks up half an hour before school finishing time to get a good spot.  Often she walks to schoool.  It's healthier you see.  She looks good, but not as though she's made too much effort.  No lycra or labels or lipstick, or perhaps that's just the schools that my kids attended.  The Schoolyard Queen has presence and is warm and friendly.  As she strolls into the yard, smiling, heads and feet turn in her direction.  Quickly a group gathers round her to exchange the news of the day.  Her kids are well-behaved, independent and studious.  I am in awe and envy.

I was the Cinderella of the school yard.  Untidy and awkward, but always armoured with black eye liner.  Sometimes I had Smiley as a prop and she was soooo cute back then, and Angel's friends would always pop over to say hello.  I would chat to their Mums, but I didn't make any lasting friends that way.  And by the time she was ten, Angel would just wave goodbye at the door and head off with her pals.

In different school yards I've played the role of career mum - late, heel-teetering, briefcase and umbrella clutching - sporty mum - in runners and lycra - ageing rock chick mum - black, silver, attitude - and unpopular mum at my son's school once his behaviour got out of control - hoodie, headphones.

There were more characters too, but perhaps I should let them describe themselves.  Or maybe you can help me?

My school-yard skulking days ended two years ago, and despite the downside, I do miss them.  Now two younger children are in special needs education and are collected by bus.  I miss walking to school with my son and the chats we had, even the Pokemon monologues.  I miss the news and gossip and rumours - often just as useful - about the school and the staff, children and parents - though in his final year in mainstream, I'd say that aspie boy and I were often the topic of the day.  No more meetings with teacher by chance or design, and especially at my son's school, I feel I barely know them or what goes on once he disappears through the doors.

Now I lurk in the virtual schoolyard of Facebook and Twitter, which also has a huge cast of characters, but mostly on my side.  If not, I just block them, something that's harder to do in the real world.  So I get to discuss all the big schooling questions on-line and at the Rainbow Junior Arch Club.  Many of the people I have met on-line have become real life friends and some of the special needs mums I met through the Club are now friends on-line.  That's the way it goes, and it is so much better than the isolation that special needs mums must have endured in days gone by.

Unlike many parents of children with special needs, I have not lost friends as a result of the different life that I now lead, apart from the natural wasting away that happens to some relationships that have run their course.   Some friends I have known since childhood, some for the twenty years that I have lived in Dublin.  They are all still part of my life and a great way to escape special needs for a while.

So I am very lucky with my friends.  But I wonder how others get on in the schoolyard now.  Once again I live just down the road from Angel's primary school.  And every day I watch the parking spaces fill, the traffic wardens suddenly materialise, and anxious mums and dads with toddlers and buggies head up and down the hill to collect their kids. Do they enjoy the experience?

Note: This was inspired by The School Gate a lovely post by @MrsBorderreiver and I meant to write it in time for #specialsaturday, the online ‘global’ campaign that aims to raise awareness of children and adults living with special needs.

Please join the cause by joining the facebook page -https://www.facebook.com/SpecialSaturdayhttps://www.facebook.com/SpecialSaturday

Follow on twitter - @Specialsat and retweeting hashtag - #specialsaturday

Read and follow the Special Saturday Blog - http://specialsaturday.org/home

Thinking about residential care #Fridayrant

For the first time ever this crossed my mind yesterday.  But only for a few minutes.  I'd been at another depressing meeting with an uncomprehending distributor of wheelchairs who just kept repeating the mantra about Smiley being a young adult and needing lots of support and being too old for a buggy.  Even Smiley's occupational therapist expressed surprise at the lack of choice.  I just had this feeling of rising panic.  What is the point of keeping my daughter living at home if we can't go anywhere?  Well apart from indoor shopping centres *grimaces*.

Then there's her legs.  Something has happened to them.  At first I thought it was my imagination, especially when no-one else could see the problem.  But finally her physiotherapist saw her yesterday and agreed with me that her right leg is now more bent and her left leg is too straight *sighs*.  And the windsweeping** is worse.  She is uncomfortable in her sling and her shower chair and winces when I lift up her legs to put on a new nappy.  So now I've got another round of appointments to organise and possibly new equipment to source, choose and fund.

I'm starting to realise how lucky I was to get ten years or so when I could work part-time with only the occasional interruption as Smiley just got on with growing and enjoying life.  Somehow I assumed that when she stopped growing, she would stop changing, but that doesn't seem to be happening.  Now I have to fit in appointments for Asperger's as well, plus trying to fix all the bits of me that keep breaking, and I find myself heading out most mornings to something.

More and more I see how few concessions the world makes to those with severe disabilities.  Doorways that are too small and wheelchairs that are too big.   'Disabled toilets' that don't have hoists and some that Smiley can't even get into.  Or they're locked and no-one seems to have the key.   Walkways that stop short of the beach and are often covered in sand, so you can't really use them.  Cafes where the tables are so tightly crammed together that I would have to put several on the pavement outside so that we could sit in comfort.  Children's shoe departments that are downstairs with no lift provided - yes I'm looking at you Clarks.  Firms that charge a fortune for unimaginative adaptations of very average vehicles and expect carers to be grateful.   No wonder so many people with severe disabilities live in institutions or community homes.  I'm not complaining about State support, it's the way the world is organised, the whole system, and the lack of information, even out here on the internet.  Apart from a handful of bloggers, I really feel as though I'm an unwilling trail blazer.  All I want is for a normal family life.  One that is not defined or confined by disability and special needs.  Is that really too much to ask?

**windsweeping is where both her legs swing over to one wide when she is lying flat - putting a strain on her back.  If not addressed this could cause huge problems, including the possibility that she would one day not be able to sit in a wheelchair/buggy.

How big is your (medicine) chest?

I have a confession to make.  I like medicines.  I like the way they remove pain and discomfort.  But I often feel too embarrassed to admit this, as many of my friends womanfully struggle on through illness and ailment.   And I really admire them.  But unless I can flop on the sofa and vegetate in front of day time TV - not possible with my three kids! - and feel sorry for myself, I will take almost anything that makes me feel better.

Sometimes the guilt catches up with me and I try to avoid taking pills, especially antibiotics.  The results are not pretty.  A recent bout of sandpaper throat led to weeks of me being cross and grumpy with the kids and miserable with everyone else until I finally gave in, went to the GP, got the antibiotics, and then, like magic, I was better in 24 hours.  In the meantime I spent a small fortune on lemsips, strepsils and chocolate biscuits.  And piled back on all the pounds I'd lost since Christmas.  

Alternative remedies have been recommended.  Many of them expensive and most of them useless.  At least for me.  The only things that have helped at all are tea tree oil and Manuka honey.  Oh and I do believe in food intolerances after discovering that the red weals on my legs were not caused by bed bugs or scabies, as the GP thought, but 'luckily' were due to an intolerance to citric acid...

My pill intake seems to rise steadily as the years go by.  At 40, I just bought the occasional packet of Nurofen.  But now that I have started to slowly disintegrate, I seem to need a growing arsenal of packets and pills to arrest my physical decline.  My pill-popping also increased when I became a contract worker with no sick pay - it was cheaper to medicate myself to the max and keep going....  

I'm not quite so keen on medicating the kids.  Angel rarely takes anything now, but then she does have a long-standing relationship with the sofa in the living room.  In her pretonsillectomy days she took enough antibiotics to be able to tell the GP whether she wanted the pink one (nice), the yellow one (ok) or the white one (gritty and horrid).  

My special girl came home from hospital with a two page prescription.  Now just a distant memory.  Today Smiley just takes a couple of things to stop the snot, and a tiny dose of moviecol to help prevent constipation, the one thing that really upsets her.

My son still believes that a plaster and magic cream can cure most things.  Just as well, as he complains of aches and pains almost every day!

So what do you do?  How big is your medicine chest?  Do you pop pills or do you tough it out when illness strikes?

Angel's birth story: Nothing to see here

I moved to Dublin with my Irish husband in 1990, and it was an amazing place and time to live if you were young and working. In the afterglow of Italia '90, there was such a buzz about the place, so much hope and optimism for the future. The music was great, houses were cheap, and traffic jams were as rare as hedge funds.

Employment wasn't easy to find, but I talked my way into a journalism job working for a small company that produced magazines. I was based in a tiny office stuffed full of equipment. And in January 1992, my employers decided that they could squeeze in one more computer. Within a couple of weeks I was feeling sick and dizzy. I was even struggling to enjoy my morning coffee. So I complained to my employers.

“I think the computer is making me sick,” I said.

They were very good. An ionizer was purchased for my office, and some of the equipment was moved back out again. But, mysteriously, instead of getting better, my symptoms got worse. Eventually I had to go to my GP. He just looked at me and said:

“Do you think you might be pregnant?”

Ooops!!! He was right of course, and I had a very red face explaining my 'illness' at work.  

That was the start of my journey to motherhood, originally published by Irish Mammy on her blog, which sadly has been taken down.

In those far-off days there was no internet, and I only had a couple of baby books, so life just went on.  I got bigger, and occasionally I visited the maternity hospital.  I worked, partied, lost my job, got another, had an operation at 5 months, ran the Dublin Women's Mini Marathon at 6 months, and attended a school reunion at 7 months.  At 8 months my Granny died, shortly after my final visit to see her, and that was hard to handle with the stew of pregnancy hormones to contend with as well.

But the nine months ended eventually and I finished work one sunny Friday in mid-September.  I was almost 38 weeks pregnant, and still quite neat.  Scans showed that my baby was not growing well, but no-one seemed very concerned and in those blissful pre-internet days, neither was I!

Considerate as always, my baby decided that 8 am on the following Tuesday was a good time to announce her imminent arrival. And like a classic cinematic drama, it all started with a very large puddle.  Oh the excitement!  I didn't know what to do, but the hospital said there was no urgency when I rang them, so I just pottered around for a few hours and checked and rechecked my hospital bag.

I *knew* that first babies meant a long labour, so when we finally headed to the hospital I didn't even bother to bring all my stuff, as I expected to be sent home again.  But because my waters had gone, that did not happen.  Neither did much else.  I lolled on the bed in the pre-labour ward, listening to Nirvana, flicking through magazines and counting the minutes between the little ripples that happened from time to time.  Was this labour?  What was all the fuss about?

Of course I found out later.  By about 4 pm the staff were getting twitchy.  It was approximately 40 weeks since New Year's Eve and the busiest day of the year on the maternity ward.  Forty-three babies were eventually delivered that day...  They wanted mine to be one of them.  So an induction was proposed.  I remembered reading somewhere that I should question interventions like this.  So I did, but I didn't know what to do with the answer they gave, so I let them go ahead anyway.  And my then husband was despatched home to get the BAG.  Meantime I was moved to the labour ward.  In those days it was like a down-market fitting room.  You got a curtained cubicle with a bed and not much else.  And it was next to lots of other cubicles occupied by other labouring women.  Outside the room was a corridor for pacing and pausing, as you do to catch yourself when the real contractions start to kick in.  And boy did they kick in!  By the time my husband returned at about five - with one of my (worried) friends - I was begging for an epidural.  They gave me gas and air at first, but that made me feel sick and I asked them to take it away.  So the anaethesist was called and the epidural set up.  And I waited for it to work.

"This doesn't seem to be helping," I told the midwife.  So they topped it up.  And topped it up again.  Still I seemed to be in pain.  Everyone describes the epidural as the ultimate in pain relief but clearly I hadn't read the small print.  I was expecting a pain-free delivery and was quite shocked when I realised that it wasn't going to be like that.  But I didn't have time to get upset.  Baby was on the way, and in a hurry.  By about 6 pm I was in the cubicle and the pains were coming very fast.  I sat up, lay down, breathed, grumbled, grunted, swore and pushed, and at around 8.15 pm my little girl was born.  Just 5lbs and skinny with a mop of black hair. She was instantly whisked away to be checked and weighed.

"I want my baby back!" was the panicked cry of this new mother.  But we were reunited within minutes and quickly wheeled out of the delivery room as there was a queue of women waiting to get in...

My friend was sitting patiently in the corridor.

I smiled and waved and held up my little Angel.

There was nothing to see.  I was fine, and so was she.

A few weeks later and already showing signs of independence!


That completes my trio of birth stories.  It began with Born Too Soon, Smiley's traumatic entrance into the world, and was followed by Losing the Plot, which I did during my son's birth.

If you enjoyed this, there are more birth stories over at Actually Mummy and also at #Blogitforbabies.  This is a campaign by Save the Children to highlight the appalling lack of neonatal and postnatal care in many countries around the world, and the dreadful toll on women and children that it causes.

The unbending gods of health and safety

And their slippery cousins, insurance and litigation.

Today I got some answers to my questions about Smiley's broken wheelchair and buggy.  And basically it looks like her quality of life is in danger of being offered up to the gods of health and safety, as required by insurance companies, and the fear of litigation.  It's not the fault of the team I met with this morning, they were very helpful, but I guess that it is not possible for them to go against the system.

Reading between the lines of what I was told this morning I discovered the following:

...Health and safety is probably why there are no spare wheelchairs for children with complex needs - because unless specifically prescribed for that child, there would be no insurance cover.  So that means bed-rest and floor-time if her transport breaks.

...I may never get her buggy back even though I have offered to pay for the repairs myself.  It is likely that the company fear that I will sue them if anything should happen to my daughter while she travels in it, as she is now marginally over the weight limit.  I understand that.  But weight limits all have a margin of error don't they?   They must.  Because that is how insurance companies work.  That's how they keep claims low and profits high.

It was suggested that I should check out some wheelchair crash test videos on YouTube. Well no thanks, I worry enough about my daughter already.  I know that Smiley is vulnerable.  There are so many places where she is less safe than other people.  I even worry about taking her on the boat, and how I would manage her in an emergency.  To completely protect her, we'd never go anywhere, but what sort of a life would that be?

What I am looking for is something smaller and sturdier, that I can accessorise to suit the Irish weather, so that she can continue with the active life that she so enjoys :)

The company representative I met today was also helpful and together with the occupational therapist (OT) we have one possible plan.  Her current wheelchair consists of a moulded seat and a frame.  The OT would prefer her to continue to use this seat, so one solution may be to buy/make a new smaller frame and attach her existing seat to it.  I should get news on this in a week or so, and in the meantime I have to meet with another company in a few days time.

Well that's another rant over, and I promise that as soon as something entertaining happens in my life, I will blog about it!