Operation Transformation - from Tot to Teen

She doesn't drink, smoke, do drugs, answer back or hang around on street corners with her pals. But Smiley is a teenager. So I was a bit gobsmacked to overhear the following exchange in Penneys yesterday:

Small boy looking puzzled: "Mammy, who's in that buggy?"

Mammy: "Well, there's small babies and big babies, and that's a big baby."

I was completely speechless, and just glared at her. I guess that was a bit unfair as she probably did not know what to say to her son. Often small children - especially girls - will wander over to Smiley and ask about her. I tell them that she was born too soon and hasn't learned to walk or talk yet. "Will she ever?" they usually ask. "I don't know, I hope so," I usually reply.

Part of the problem is her (adult-sized) buggy. Most 13 year olds are in wheelchairs, but for us that would mean staying indoors whenever it is wet or cold - as in about 11 months of a typical Irish year. If we only got out on sunny days, you'd have to cart us all off to the funny farm. I found Smiley's wonderful "Bug" buggy on the net and it has everything: playtray, rainhood, footmuff and shopping net - it's fabulous, but confuses onlookers who just see a very large (baby's?) buggy.

Since I was in town to buy Smiley a spring coat, I decided she needed a new look: one that says teenager, not tot. So we did the rounds of the clothes shops and I discovered that she now likes trying clothes on - not so different really from any other teen really:

We ended up totally on-trend with a couple of over-sized hoodies, and leggings in black and denim. So what now - how do you provide a typical teenage experience for a girl with severe physical and intellectual disabilities? Should I consider a little eye-brow reshaping, perhaps a dusting of mascara? And when the transformation is complete, should she be going to discos, perhaps for teens with special needs? It's yet another problem to consider, but I've no answers at the moment.

10 comments no answers, severe handicap, teenagers with special needs

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Letting Go

Living with a child with Aspergers seems to be all about letting go. I keep battling with it and losing. You just can't fight it, well not every aspect anyway!

CD has actually been a little star since that major blip last month when the school called me in for a very scary meeting.

In fact, I'm nearly forgetting his diagnosis. Aspergers in this house is like a little red truck, it causes CD to stand out a bit from the crowd, but we trundle along quite merrily until something goes wrong. Then there might be a little ding or there might be an almighty crash, and carnage.

Our truck driver is also a guy of limited interests. I want him - and the rest of us - to do things, go places, have new experiences. But the little red truck just wants to stay on the same old road. Friends have said that I should force him. Tried that!!! Doesn't work...

One rainy day last summer I bundled CD and Smiley into the car and headed out to a nearby farm. CD is big into animals, so I thought it would be a wonderful surprise and a great treat. We got there and he refused to get out of the car. It was meltdown city when I tried to make him.

He told me that he doesn't like surprises - and doesn't that remove one of the lovely parts of being a parent? When your child's face lights up with delight when you give them something unexpected. It's not the same when they get what they asked for. They just move on to the next thing on their "I want" list.

Since the scary school meeting he has been as good as any other child. And with all the supports in school, he has been achieving maximum marks for behaviour every week - during the two previous school years, that NEVER happened. I promised a major treat if he did succeed, so I've spend the past few weeks coming up with lots of exciting ideas (well I thought they were anyway). Educational outings, historical outings, trips to play centres, trips to parks, swimming. But nothing worked out. Either he just said "no", or he wanted friends to come, who weren't willing or available.


So the little red truck is following its own road. Tonight I gave in and logged onto Amazon, again, and ordered a couple of new games for Wii and DS that he says he really wants. He's happy, and I guess at the end of the day that is what is really important.

6 comments Aspergers, computer games, letting go, treats

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Happy Ever After

You start a blog and pootle along quite happily, pleasing yourself and posting stories every now and again. Then you wake up one day, log on and find that you have followers, which is fantastic, it feels really good to know that people like what you write. But you also feel a responsibility to find stories to keep them entertained. And someone who knows I've been feeling a bit down lately has tagged me to write about 10 things that make me happy every day, and then nominate more blogs to do the same. Thanks Jen! And if you haven't already, check out her blog, it's a great read and she's fab at the techie stuff so it's really professional and innovative.

So keeping it clean, here's my top ten - therapy for me and (hopefully) entertaining for you - and in no particular order......

1) Angel: what can I say? She has been making me happy since the day she was born 17 years ago :)
 

2) Smiley: remember when your baby would greet you with wide eyes and a huge smile every morning? Well I get that every day, after 13 years. And through having a child with complex special needs, I have met so many wonderful people and discovered strengths - and weaknesses - I never knew I had.

3) CD: happiness and sadness in equal measure. Asperger's is very hard to handle, the things he says and does can be very upsetting, but then he'll see I'm sad and fling his arms around me and say: "I just want you to be happy, Mum." What more could I ask of my son than that?

His first obsession: washing machines!

4) My GHDs: changed my life and my hair (see 'before' pic above).

5) The three Cs: coffee, cheese and chocolate, no day would be complete without these three!

6) Running: despite having a bad back, bad habits, and being the wrong side of 10 stone (see the three Cs above) and 47, I can still run! And those wonderful endorphins give a better high than anything available in silly Head Shops.

7) Writing: makes me feel happy and useful, and means that I can entertain and help my friends and anyone else who reads my stuff.

8) Days on the beach: my perfect day would be spent on the beach with the kids - with some help thrown in.

9) Dinner cooked by someone else, wine, music and good company. Ideally following a day at the beach!

10) Phantom 105.2: my secret vice. I try very very hard to act my age. Occasionally I fail. Sometimes spectacularly - and some of my friends say that they will never again be able to listen to the Black Eyed Peas without thinking of me. Say no more...


Thanks again Jen, I really enjoyed putting all this together :)

13 comments cheese, chocolate, coffee, days on the beach, GHD, Happy ever after, running, writing

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Getting out of the house is my SADness tonic

Spring, shopping and a surprise competition win have certainly lifted my mood. What a tonic!

I now suspect that SAD (seasonal affective disorder), as well as RH, caused my downer during the last few weeks. Cold weather and grey skies have seemed unending. We've all been shivering behind the net curtains for too long. Outside, the grass was dormant, the trees bare, and the birds silent. Everything has been on hold. But yesterday, the sun shone for St. Patrick's Day, and the whole world was tweeting about Ireland, Guinness, St Patti's Day (when did that start??). At the St. Patrick's Day Parade in Clane, you could just see that everyone was ready to put the winter behind them.

Tuesday was shopping day, and I really should make the effort more often as Dublin is a fantastic city and I am so lucky to live here. Once I'd left CD at school, I walked into town and back, wandered around, bought a few books for the kids - yes they are reading now! - and grabbed a quick cappuccino. After such a miserable day on Monday, a little light shopping was a great start to feeling better.

When you have children with special needs, getting out can be difficult. When you bring them with you: people stare, or children comment about your child, as they may look different or behave in an odd way. If you have a child with autism or aspergers, public outings are often accompanied by meltdowns and public disapproval. Sometimes it becomes easier not to go out at all. CD would happily spend all day every day playing on the computer, Wii or DS, unless he has a friend over to play. But all these activities involve me staying in the house with him. When he and the others are at school I am normally trying to catch up on housework (in theory anyway!), or tackle the seemingly never ending 'to do' list. Going out socially is difficult to organise and expensive when you are paying premium rates for a babysitter trained to deal with kids with special needs. Yet I'm more not less likely to be at risk of depression about my life and what the future holds, but I can't easily get out, even though it's something that I really need. In the last century the GP would probably have prescribed a tonic. Today it would be 'happy' pills, but I'm not ready to go down that road. So what to do? If I'm feeling low, that's not going to help my kids, and it's my job to find a tonic to cheer myself up.

Now that Spring is more or less here, I am determined to get out every day, even if the windows get grimy and the cobwebs get bigger as a result: the kids won't notice, and if anyone else does, well tough! For the moment, that is my solution. Let's hope it works, for the sake of the kids anyway.So what's your tonic?

My surprise win

Thanks to a surprise win in the Reebok Runners Competition over at Irish Mammy on the Run, I'm gonna have some lovely new gear to help me put my plan into action. A huge thank you to Irish Mammy and to Reebok. I love surprises :)

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Feeling sad

Well you may have noticed that I've not done anything very interesting lately and that all my blog posts have been a tad downbeat. Must do better, as they say! I want to be entertaining and amusing, but I'm a bit distracted right now. Dealing with the kids and their problems can be hard at times, but there's always funny stuff and good news in the mix. But dealing with ex-husbands and trying to finalise a fair and equitable settlement for the second time ... well that's something else. No funny bits and, at the moment, no good news. Since some of you know him quite well, I don't think it's fair to say too much, but I just feel like %$^£*(&(@3t23)@*&)!!!!!!!!

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Death by childbirth in the USA

Childbirth - the gory bits - was the subject of almost every late night conversation over a bottle of wine during my 30s. We talked about our feelings, the pain, what went wrong, what went right, hospital births, home births....we also moaned a lot and wished it had all gone differently. Not once did we celebrate the fact that we and our babies had all survived childbirth, or considered that Ireland has the lowest maternal death rate in the world (UNICEF 2005).

I was thinking about this when I read that maternal death rates have doubled in the USA in the past 20 years. At least two women die in childbirth every day. To say I was shocked is an understatement. In 1987 there were 6.6 maternal deaths per 100,000 births. By 2006 that had increased to 13.3 deaths. In Ireland it is 2 deaths per 100,000 births. The report, by Amnesty International, also shows that 13 million women aged 15 to 44 years old - or one in five - do not have health insurance. Having a baby in the USA without health insurance is very expensive - and if your child is premature or has health problems, say hello to bankruptcy. So it's hardly surprising that some of the highest rates of women dying in childbirth are in deprived African American communities.

"In the U.S., we spend more than any country on health care, yet American women are at greater risk of dying from pregnancy-related causes than in 40 other countries," says Nan Strauss, the report's co-author, who spent two years investigating the issue of maternal mortality worldwide.

Some commentators are also speculating that high rates of caesarian sections in the USA may also be a contributory factor, but I am not sure how relevant this is. I wonder how many of the African American women who died had caesarians? I imagine that most of them would not be able to afford a section. And I'm not trying to pick on one particular group, it's just that they have a particularly high death rate - more than 32 deaths per 100,000 births.

I so hope that President Obama takes note of this report, and that improvements in maternal care form part of his final healthcare package. Americans see their country as the world's leading nation, and most of us admire their optimism, their work ethic and the opportunities that they give to anyone who is prepared to work hard. But why can they also not care for those who need it, and why has care for mothers got worse as technology has improved and incomes risen? Set a good example for the world, start with pregnant women, and make the future better for all their unborn babies.

On Wednesday, the world will be celebrating all things Irish. Now I know that childbirth in Ireland isn't always ideal, but it is at least pretty safe. So wouldn't it be great if other countries aspired to our maternal mortality rates, as well as the 'craic'.

Happy Mother's Day!

6 comments Amnesty International, childbirth in Ireland, maternal mortality rates

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Mistakes!

oops, if you just saw a blog post appear and then disappear, that was me pressing the publish button too soon.

Wonder would blogger introduce an "Are you sure you want to publish this?" button.

Leave a Comment Blogger improvements, mistakes

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The bitterest pill

Hard to believe that it is more than 10 years since I first asked RH for a separation - and yeah I know I had a baby in between, but Hell, I thought we were back on track.

We got legally separated in 2007, but the agreement is no longer relevant thanks to the property crash. So I'm in separation limbo.

Now there is a new proposal on the table. It still needs tweaking, but it looks doable, and would finally enable me to move on with my life.

RH will have a home near the kids, so they could see a lot more of him. Our home will be more convenient for everyone, and Angel is absolutely delighted with the plan. I haven't told CD yet, cos it's not definite, but I've sounded him out in a general way and he likes the idea as well.

My back is killing me again this morning, and while I know that my wonderful friends at the Willows Clinic will fix it for me, that's only a sticking plaster. I now urgently need to live somewhere that is adapted for Smiley's needs - and the new proposal will cover that as well.

So why am I feeling so low? Why do I just want to climb into bed and pull the covers over my head and not come out?

I'm not good at analysing my feelings: I find it safer just to stomp all over them until they go away.

I also don't do conflict: I would probably have got a lot more in 2007 if I had gone into Court and fought him. Instead I settled on the court steps. Now RH and I can talk politely, and it has to be better for the children to see this.

It's just that the new proposal means that RH still gets more or less everything that he wants, as do the kids. But me? When I left my marriage in 2007 I still had one big dream left, and sadly it looks as though I will have to say goodbye to it if this is to work. There I've said it and, shock horror, I'm actually crying :( Nearly forgotten what that was like - too busy to cry when the kids are at school and try very hard not to cry in front of them as they just get worried. Like with CD's diagnosis, I know that once the deed is done I will probably cope ok, it's just the waiting and worrying and wondering beforehand that is so hard.

So do I swallow this bitter pill in the interests of harmony and my kids?

16 comments property crash, separation limbo, shattered dreams, The Willows Clinic, thinking of the kids

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Green shoots or just daffodils?

The first daffodil is finally out in my estate :D Hopefully this means the end of this long cold miserable winter, and the start of spring, both in the weather and the economy, here in Ireland. As I look out of the window, I may be sneezing, but the sun in shining, the sky is blue, and you just have to think that life will get better for all of us.

Sadly, I'm not sure that this will happen. I believe that the November Budget dug deep trenches between the different sectors of Irish society. During 2009, almost everyone sat on their hands and hoarded their money in case the Budget targeted them. But as commentators have observed, the income of many well-paid people was almost completely unaffected by the measures in the Budget. Instead, it was the public sector, the low paid, young families and those on social welfare who were made pay for the mess that has been made of this economy.

After the Budget, the message from the Government and the media was that the worst was over, and consumer confidence was returning. And you would believe that wouldn't you, if your income had not changed? So this group have started buying again: the tills are ringing in Dundrum Shopping Centre, and new cars are appearing on the roads. I can see it in my estate. When I moved here four years ago, most of the cars were new or a few years old. That has completely changed: there is a sprinkling of 09 and 10 cars, a number of recent cars that people must be hanging onto, and an explosion of pre-millenium cars. We used to call them bangers, though they are probably in better condition that the bangers that I looked at when I was young.

I understand that billions of euros still have to be pumped into Irish Banks to keep them afloat, and many of us are waiting in trepidation to see who the Government will pick on next. But if they have persuaded one group of people that spring is here, somehow I think that they will be left alone, to prop up what is left of this economy.

8 comments daffodils, Dundrum Shopping Centre, Irish banks, new cars, the Irish economy

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Squirming for a good cause

I had to get over myself this week. Twice.

First there was the bag packing fundraiser for the Rainbow Junior Arch Club, where Smiley meets her friends on a Saturday afternoon. I was 'in charge' of the first team, and between the six of us we raised almost €250 packing bags in the local supermarket in less than two hours on Thursday morning. It has to be one of the easiest ways to fundraise - very little organisation is needed, and people are so generous, especially when they see that the cause is children with special needs. The Club's prize-winning poster in the shop window helped to generate even more interest:

So what is the problem? Well I feel like such a hypocrite, as I have always really disliked bag packers. I am that woman who scuttles up and down the checkouts with a full trolley and two kids in tow. I'm not looking for the shortest queue, just the one without a bag packer.

I have even timed trips to the supermarket to avoid them.

This behaviour has always made me feel guilty, as most of the bag packers I see are well-intentioned teenagers. They are polite and helpful, and it's great to see them volunteering, but that doesn't stop them putting raw chicken on top of cheese when I'm not looking, or squashing the sliced pan with a large box of washing powder.

So on Thursday I got to experience bag packing from the bag packer's perspective. I could see the wariness in the eyes of shoppers when they spotted me lurking at the end of the checkout. Note to self: next time wear clothes that suggest organised housewife and not ageing student.

Quite a few shoppers declined my offers of help, but put money in the bucket anyway :) Others looked so worried when I advanced on them (I don't look that scary, honest!) that I asked them exactly how they wanted their shopping put away. One young Mum was quite happy for me to follow her toddler up and down the shop while she did the packing!

So today's resolution is to embrace bag packers in future, well not literally, but to remember that they have given up their time to raise funds for a good cause and I should be supporting and applauding that. I will let them pack my bags (with a little direction perhaps) and put enough money in the bucket so that they feel this volunteering lark is a worthwhile thing to do.

And the other thing? Well I did some PR work for free this week to help out some friends. As a consequence of this I gave some free publicity to an organisation that used to pay me to do the same thing. Uncomfortable feeling and I'm not sure that I like what that says about me! Must do better....

16 comments bagpacking, children with special needs, fundraising, squirming

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How a perfect baby becomes an amazing boy with Aspergers

"He's perfect," said the consultant with relief as our baby son was born in 2001. This had been a 'high-risk' pregnancy, because my second child - Smiley - was born in 1996 at 26 weeks. But CDs birth had not been easy, and I didn't care about anything for a few days, with the result that he only got two names - his sisters got three each - and I just hope that didn't add to his problems! Very quickly though I fell in madly in love.

By the time of his christening, I looked like the cat who got the cream, according to his godfather. But even then, there were signs that he was not going to be an easy baby. He cried. A lot. And he wasn't great at eye contact. At 6 weeks he fell very ill with a roastingly high temperature, that no amount of Calpol and wet sponging would bring down. Finally, I dashed into the Children's Hospital with him, and he was diagnosed with severe tonsillitis. This was a pattern that was to be repeated over and over again, during the next couple of years. I also noticed that he didn't point, and that he seemed to have no sense of balance. As soon as he started to toddle, he started to fall. And he had no idea of how to save himself. I called it tree falling. If you have ever seen a tree being cut down, you will know what I mean.

He just went straight down without putting his hands out, and even though I literally ran around after him, I couldn't always save him - I was terrified of head injuries and brain damage and spent long hours waiting for X-rays at local hospitals. He wasn't talking either. I started to worry after his first birthday, even though everyone said, "Oh he'll talk when he's ready," I just knew that something wasn't right, and began the long round of consultations. His paediatrician suggested that CD might have hearing issues, so I was sent to the local audiology clinic. There he was identified with speech and understanding delay. I remember this whirring noise in my head - the La La La thing, I'm not hearing this, I do not have two children with developmental delay, it is NOT POSSIBLE! But anyway I went home and worked hard to bring on his speech, and went back to work part-time. He started in a creche and that went fine. The staff said he was intelligent and friendly, but perhaps a little volatile.

Meanwhile the tonsillitis was becoming a real worry. At about 18 months he was referred to an ENT consultant, who took one look at his tonsils and put him on the urgent list for surgery. They were removed in 2003, and I was made up when almost immediately he gave me a big smile, opened his mouth and said "Mammy?", and once he started to talk there was no stopping him! Sadly, two weeks later I got one of the frights of my life when I heard a disturbance in his room at about midnight, and ran in to find him covered in blood - he'd had a bleed, one of possible complications of a tonsillectomy. I bundled him into the car and drove at what felt like 90 miles an hour to the hospital and literally ran in scattering people in my wake, all wild eyed and drenched in blood with this white-faced toddler in my arms. But after a couple of days, we came home and all seemed to be well once more.

There were other strange things happening though: I tried to start him at the local GAA club with his friends, but he hated it, and said he didn't like football. I enrolled him in swimming lessons as the rest of the family are very strong swimmers, but he just messed around and can still only swim a little and I didn't manage to teach him to ride his bike until he was seven!

Conversations with him were and are very one-sided, he talks and you listen. He was difficult about everything unless it was something that he wanted to do, but again I was told by friends and family - with the best of intentions - that he was "just being a boy". Punishments such as the naughty step made no difference, the only thing that helped was giving him an exact schedule with times and dates as to what was going to happen. I also used a timer to let him know how long he had before the next activity was due to start. When other kids wound him up he would overreact, completely lose control and get quite violent, so some children were banned from playing with him, which really broke my heart. He got fussy about his clothes: all labels had to be cut out and only certain fabrics passed the 'comfort' test.

He started school in September 2005 and all seemed to be going fabulously at first! He loved his teacher and found the school work easy. But in the meantime my marriage was falling apart, and it was beginning to have a really bad effect on the children. Following one event, CD started to behave extremely badly in school and suspension was mentioned. Angel also could not cope. It was time to act. On August 27th 2006, I moved out of the family home with the kids. Of course this was very traumatic, and we all thought that this was why CD continued to act up at school. He was given time out of the class to deal with his social and emotional issues, and put on the Rainbows Programme.

Still his behaviour did not improve in school. He would not follow instructions, hated handwriting, constantly messed, could be violent towards the other children when he got angry, and was not afraid of anyone, including the Principal. I was called in over and over again, even while I was desperately trying to hang onto my job. I started to google his behaviour and post on the rollercoaster parenting site. Initially, I thought it was ADHD. Then early in 2009, on yet another visit to the school, his class teacher said she thought he fitted a diagnosis of Aspergers syndrome, and that the school wanted to get the NEPS psychologist to review him. This happened in May and I had a firm diagnosis by July. I was actually more upset before the diagnosis, because I didn't know how I would cope - in the end it came almost as a relief, cos otherwise his behaviour might have been caused by crap parenting skills.

Now some supports have been put in place (no thanks to the Health Service tho'!) and, since Christmas, his behaviour at home and school has become more acceptable. I still find him very difficult to manage in all sorts of ways, but I now have the space to look back and see how far he has come. CD is funny, charming, affectionate and clever, and now I have an explanation for the things he says and does that are strange and sometimes scary. He was a perfect baby. He is now an amazing boy who has his own special take on the world: he has Aspergers.

26 comments aspergers diagnosis, mainstream school, speech and language delay, tonsillitis, typical boys

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