Sunday, 26 October 2008
And now I'll get on with this post, which I've been promising to write for about the last 2 weeks...
There had been no hint that anything was 'wrong' (or rather 'different'...) at the time Tom was born; so Mark and I spent the first 6 weeks blissfully unaware that our little guy was actually fighting for his life.
Looking back, however, I remember feeling a little bit concerned about the amount of hours Thomas slept; about the number of times he choked during his feeds, and about how 'floppy' he seemed to be. Of course when you don't know anything, and you're a 'new', hormonal mother of a 'new' baby, you just dismiss any concerns, and feel rather silly for even having them in the first place. You don't want to say anything in case the 'professionals' laugh at you and set out to prove you wrong. Because that'll only upset you, and you really, really don't want to get upset with that amount of hormones raging around in your body!!
Tom and I had a routine check-up at 7-8 weeks. Unbeknown to me, I think our Health Visitor Jo had already raised some concerns with the Doctor, and had probably even expressed her suspicions that Tom might have Down Syndrome... But it wasn't within her rights to tell me what she felt. So she said nothing.
Our lovely Dr Miller then set out to check Tom out thoroughly; she spent a loooong time listening to his chest and heart in particular. And repeatedly pulling him into a seating position from him lying on his back to see whether his head would 'follow' the rest of his body, or flop back... I'm 100% sure Dr Miller had taken one look at Thomas, and known immediately. But it wasn't really within her rights to tell me what she saw, and make a diagnosis; so she didn't.
She refered Tom to a Consultant Paediatrician at the same hospital where he had been born. She must have put 'urgent' on her referral, because we got seen pretty quickly!!
The Paed was one of the most professional yet delightful, compassionate doctors I have ever met. Having been told in Dr Miller's referral letter that Tom had a very significant heart murmur, Dr Kumar spent about 15 minutes just listening to his heart and lungs. And examining every inch of our tiny baby boy.
I remember the sense of dread slowly seeping into my whole being, and feeling clammy, and sick with worry, knowing that something was seriously wrong. Mark was with me through the whole thing, but I was hardly aware of his presence. Or of how he might be feeling...
We knew he was going to give us some bad news, but DS simply hadn't crossed our minds! Not in a million years did we ever imagine one of our children might have Down Syndrome... So when Dr Kumar gently told us that as well as having a significant heart condition, he was pretty sure Tom had Down Syndrome, it felt like a dark shadow had suddenly obscured all my thoughts and senses.
After finally giving us his diagnosis, which he said needed backing up by blood tests, Dr Kumar encouraged Mark and I to leave the room so we could react in private. When we did, I fell into Mark's arms, and cried, and sobbed, and wanted to scream at God that it wasn't within his rights to give us a child with disabilities! Mark just held me, too shocked to really respond to the news in his own way; it would take him much longer before the reality of it started to sink in properly. He was very quiet... and loved me in my grief.
Once we left the hospital, we drove around town for a while in a complete daze. Even though we knew the diagnosis wasn't 100% certain, we had no doubt it was nevertheless accurate - and that Tom's heart would need fixing. We had a child with Down Syndrome, who was going to need fairly urgent heart surgery, and who in the meantime was put on medication to stabilise the insane amount of fluid his heart was pumping round his body, putting his lungs under intense pressure...
It was a lot to take in.
Looking back, it still is...
Wednesday, 22 October 2008
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
(©1987 by Emily Perl Kingsley. All rights reserved)
Another 'cheat's post'... I know! But this says everything - and more - about what it's like to have a child like Thomas. Holland was unexpected, a shock at first; and it's certainly different. But it is beautiful, and it is amazing. And I am grateful to have this opportunity to explore Holland as well as Italy. Although I must say Italy has many unexpected, unknown, unexplored places too... and is not all it seems.
Sunday, 19 October 2008
My face may be different but my feelings are the same.
I laugh and I cry and take pride in my gains.
I was sent here among you to teach you to love,
as God in Heaven looks down from above.
To Him, I'm no different
His love knows no bounds;
It's those here among you in the cities and towns,
that judge me by standards that man has imparted,
but this family I've chosen, will help me get started.
For I'm one of the children so special and few,
that came here to learn the same lessons as you.
That love is acceptance, it must come from the heart;
we all have the same purpose, though not the same start.
The Lord gave me life to live and embrace,
and I'll do it as you do, but at my own pace.
Friday, 17 October 2008
1. He totally adores playing with cars. Obsessively so
2. He has 'fallen in love' with Eddie, his new bus driver (an upbeat, hilarious Scotsman), and pretends to cry when he gets dropped off after school...
3. His favourite word at the moment is 'monkey'.
4. 'Monkey' is his favourite term of endearment for pretty much anyone he comes into contact with (in the UK this means 'a person regarded as somehow like a monkey, as a mischievous or imitative child'). He calls me "Mummy-Monkey"; except it sounds more like 'makee' or 'makick'
5. His favourite movie is Tarzan. He knows the dialog by heart, and is able to expertly mime everything that happens in it
6. He hates bananas...
7. ...and most other types of fruit - apart from satsumas or clementines (apparently). He calls these orange ('awidg') yet when I offer him orange, he throws it across the room and declares 'no, awidg, yuk!'
8. He hates any type of veg
9. He drinks very little
10. He 'suffers' from chronic constipation... *surprised?!?*
11. He started walking just before he turned 3
12. He's unbelievably cute - AND HE KNOWS IT!!
13. He loves his own space, and puts his toy basket against his door when he's playing in his room so his brothers can't get in. If they try to force their way in, he screams: 'geh outta mah woooo...!'
14. He is incredibly strong despite also being on the 'floppier' end of the spectrum for Down Syndrome - and your safest bet is to keep well out of his way if he's in a strop
15. His favourite foods are 'ahwidgis' - and no, that's not 'oranges' (watch the clip in my previous post and you'll get it!), pizza, and ice cream. *Yup; he is just a boy...*
16. Seeing as he likes pizza, I make my very own tomato topping which I cram full of veggies and sometimes an apple too; and then blend within an inch of its life. He wolfs it down and is none the wiser. Hehehehe...
17. Whenever he passes wind, he faithfully apologises ('paden meee...!') then giggles profusely
18. He instinctively knows how to elicit a smile out of even the grumpiest soul
19. He responds to men infinitely better than women
20. He is the most fickle little 'monkey' I've ever known...
21. He likes silky labels (the ones you find on the inside of most clothes) and is perpetually on the hunt for one to stroke, especially when he's tired. This can make getting dressed a considerable challenge...
I'll have to run a 2nd one of these lists - one is just not enough...
But it'll do for now!
Wednesday, 15 October 2008
Tuesday, 14 October 2008
Once I had got over the initial shock of giving birth in such a dramatic way, and once the milk had 'come in', I quickly settled into having a new baby at home. The first 6 or 7 weeks were dreamy, and I remember feeling elated, full of joy and purpose, and soooo in love with my Thomas!
He was the cuddliest baby, and he spent hours 'snuggled' into me, his little floppy body tucked into a ball fitting neatly onto my tummy. It was like being pregnant, except it was much, much nicer...!!
He fed well although he did tend to choke very easily, and used to come up for air quite a lot more than Sam had. He was a 'well baby', according to the health visitor. He slept all the time, and I remember thinking what a good baby he was. At night time however, he 'squeaked' in his sleep and so he ended up on the landing just outside our bedroom door so that we could get some sleep!
Little did I know that we could have lost him at any time. The squeaking wasn't just a 'quirk'; it was because he was struggling to breathe. The reason he slept pretty much 22 hours out of 24 was that he was exhausted from the breathing and the feeding. Little did I know that in those weeks, he was in heart failure much of the time... I didn't know because no-one told me there was anything different about this baby!
After delivery, the useless midwife which had been 'supporting' me in labour washed him and put him on me to feed, roughly forcing my nipple into his mouth. She had obviously missed out on the part of her training which taught her to look out for any unusual features in a newborn... Because she was just desperate to get home, and so really didn't take a second glance at my baby. Never mind the slightly upwards-slanting eyes, the small, lower-set ears; the flat nasal bridge, the curved little fingers, the sandal-gap between his first 2 toes... Never mind his tiny little mouth, cute button nose, yellow tint and general floppiness.
But it wasn't just that one midwife. Oh no it didn't stop there! Absolutely no-one saw it; from junior health-care assistants to consultant paediatricians, whoever routinely happened to come into contact with Thomas didn't stop and look a little more closely.
Can you tell I am still reeling? Still angry?! Still bemused by the fact we were so let down by the maternity department after Tom's birth.
Don't they say 'ignorance is bliss'?? And those first weeks were just that: bliss. It felt like we were a proper family, and that our second son was going to be a piece of cake!
Little did I know that things were about to change... And that our entire world was about to get turned upside down.
I'm not doing great with the whole 'one post a day' thing here... I feel terrible! But then there is that little button in my sidebar stating that I'm "blogging without obligation".
And I am sick.
And I have very little spare time.
And it takes me AAAAAAAGES to write anything half decent.
And I'd started writing a beautiful post about 'what happened next' - and my freaking computer decided to shut down IE7 - without allowing me to save what I'd written first. I was SOOO cross it made me bite my hubby's head off several times more than I normally would... And after that I completely ran out of steam, totally deflated that my efforts had been wasted.
But I shall choose to forgive Microsoft for destroying my precious work; it probably wasn't that good after all.
And I'll give it another go.
I guess that's what life is all about isn't it??
Sunday, 12 October 2008
It's not that easy trust me! I mean you've seen how cute he is, right??
But beneath the cuteness lies a rather naughty, manipulative streak. He knows he's cute and plays on it; he thinks he can get away with murder - and he probably could! Yes, butter would not melt in that little boy's mouth.
Seriously - it is a known fact that all kids feel safer when those in authority over them deal with unwanted behaviour consistently and make the boundaries crystal clear. But with our Tom, it is all the more crucial to be consistent and straight down the line, because he forgets things quite easily from one incident to the next; and as he learns best through repetition, the way he is disciplined has to be consistent...
So if he hits, or throws, he has a warning and then goes straight to his room. If he refuses to eat, he can't watch TV. He's not allowed food in the lounge unless we specifically say it's ok and give it to him ourselves. If he gets up after we have kissed him goodnight, we shut his door.
And so on.
However it's all very well being consistent with Tom, but it is also just as important that his brothers are treated the same... And that's where it gets a lot more complicated! The other two boys are both on the Autistic Spectrum, and so have needs and difficulties which are completely different, sometimes even opposed to Thomas's. For example, if Ben has a temper tantrum, the trigger might be a lot less obvious, and the reasons much more complex - it could be linked to anxiety, or misunderstanding/ misinterpreting of a situation or something someone has said or done. So occasionally, I have to give him the benefit of the doubt, and respond to the tantrum with much gentleness and reassurance instead of shutting him out.
Still, with Tom, consistency works really well, and on the whole, we manage to get to where we need to be - although it might take some time if he isn't feeling cooperative!
So today, Sunday, was a week on from 'The Incident'... I had to be at church earlier than I normally am, and there was a high risk that he might 'reoffend' as I was having to watch all 3 of them. So I made it absolutely clear to him that he was not to leave the hall without mummy, and that he was not to go swimming.
Well I'm glad to report that the incident was not repeated, and that he didn't go swimming. I am pretty proud of myself...
But what about you, fellow-parents of a child with DS? What is your take on disciplining kids with special needs? Do you use rewards/ sticker charts/ any special systems...? What works and what doesn't? I really would be interested to read of your experiences - might even do a little summary in my blog of your thoughts, ideas, suggestions if there are a few. But please do share. This month after all, is in part about knitting us a little closer together as a community - and I for one am grateful for the opportunity to feel less alone.
Friday, 10 October 2008
Can't say I didn't warn you though!!
But this time, I will tell you a little more. Not much though, as it is my own bed-time.
People with Down Syndrome have a tendency to have an under-active thyroid. While this isn't currently an issue with Tom, he is being fairly closely monitored, as one of the symptoms of hypothyroidism is tiredness; and to be fair, Thomas does get sleepy very easily...
Usually, he starts off by going very quiet and looking blank, then lays down on his side anywhere that he happens to be, curls up and looks for a label on any item of clothing he can get his hands on. Sometimes he will start chewing on his thumb and groaning very gently, or he will suck his tongue - an art he has perfected over time...
Tom sleeps easily, and always has. When he was tiny, tiny, he would sleep almost 22 hours out of any 24 - to my relief ("oh what an easy baby!"), but also slight alarm...("...hope he's all right, he does sleep an awful lot...")
One of the pictures here is of him fast asleep ('soundo' is how one of his bus escorts refers to it) in his pushchair, which was taken minutes after he had come off his school bus at 4 in the afternoon. This is a daily occurrence, and the days when he doesn't doze off on the bus are few and far between; those days are great fun, because he will bounce his way out off the bus, ready for more fun and games at home, our very own lively, bouncy Tigger! Sadly this rarely happens, and so the Tom I get is a little boy who is sleepy, and subsequently grumpy as hell, who whines and cries until he is awake enough to accept a sandwich and a drink.
So you see?
For all the fun we have when he's awake, we get a lot of grief from him when he's tired, sleepy, or he has just woken up from an afternoon nap.
But compared to what a lot of people have to cope with on a daily basis, it's really no biggie.
He's just a little boy with a fiery temper, and he is best avoided when not wide awake.
Thursday, 9 October 2008
This one extra chromosome runs throughout his entire body - but really... he's just a boy! He likes a crazy hairdo, slices the air with a lightsaber from time to time, delights in snow and enjoys pretending to be an important businessman. He's just a boy and he plays, plays, plays. He's just a boy and his life is a bundle of fun, giggles, and monkey-ness...
He's just a boy and that in itself makes him extraordinary.
*...more pictures to follow...*
Wednesday, 8 October 2008
I got to 42 weeks, and at this point they decided it would be wise to induce me before I burst open!
It was hideous, and I had virtually no pain relief. Of my three deliveries, Tom's was the most painful, the quickest and most dramatic. Once my body got going, Thomas was born within a few hours. The midwife looking after me didn't even manage to get me up to a proper delivery room, and she was hardly even in the room when I pushed him out! I think she was quite panicked, as I was screaming for pain relief, and they were very short staffed... I might well have pushed her over the edge, and for all I know, she may have subsequently quit, deciding midwifery wasn't 'for her'. I would have agreed with her.
Tom was out, and scored pretty well on the Apgar scale - once he had been resuscitated... He came out blue, and I remember Mark having to scream down the corridor for a resuscitaire to be wheeled in as swiftly as possible, and please would someone come and help! They eventually cleaned him out, and handed him to me, a little pixie of a baby with gingery hair and a cute little button nose. After taking one look at him, I know my first thought was that he wasn't nearly as handsome as Samuel had been at birth, and to be frank, I was more than a little disappointed...
However by the time he was all snuggled up and feeding on me, I was in love! This little boy, who had promptly emptied his bladder on me as soon as he'd come out, was my own; he looked possibly a bit 'odd', but he was my son.
Monday, 6 October 2008
Sunday, 5 October 2008
Our church meets in a leisure centre which has a swimming pool. I hasten to add that we do not meet in the swimming pool..., although it does get used for baptisms on a regular basis.
Now Tom has a habit of escaping on the quiet at the end of services, when everyone is busy drinking coffee and eating doughnuts, and I take my eyes off him for 1 minute to make eye contact with the person I'm talking to. As you would do in a normal conversation! He likes to go and explore the vast building which is full of nooks and crannies - and has a SWIMMING POOL...!!
This happened again today; I was talking to a friend, and possibly became a little too engrossed in the conversation. One minute, he was sat on a mat playing happily with something or other - and the next minute he was gone. The little monkey had done a runner. Again.
However this time, sending a search party for him came to nothing, and he was impossible to find. Usually my best bet is the ladies' toilets. But today, he was NOWHERE to be found...
Until Mark remembered about the swimming pool.
(You know what's coming, don't you?!)
He'd already done it once, a couple of months ago, and it'd had us in hysterics although we were somewhat shaken by it too. We had told him off, and hoped it was a one-off. But no, it wasn't - and for the second time, our Thomas was found butt-naked and sopping wet, happily sitting by the side of the pool, obviously about to jump in again, and totally oblivious to the rest of the world!
He had somehow sneaked into the changing rooms while no-one was watching, stripped off, and taken a little dip... All within the space of about 3 or 4 minutes!!
Can you imagine how hard it was to keep a straight face while we told him that was NAUGHTY, and that Mummy and Daddy were CROSS, and that Thomas must NOT go SWIMMING on his own AGAIN...???
My, that boy keeps us on our toes...
Saturday, 4 October 2008
But this one was different, in that it was 'ordinary'; this may sound a bit strange, but it makes total sense really: with Sam, I was a nervous, chocolate-addicted wreck, and always expecting to miscarry! With Ben, I was depressed, and in constant pain and discomfort... I am pretty certain that the mother's emotional 'state' in pregnancy has a direct impact on the child's disposition later in life, and I can verify this first-hand; Sam and Ben are incredibly highly strung, while Thomas is pretty laid-back and 'happy-go-lucky' most of the time. Incidentally I wonder whether the reverse is also true, and whether the child's personality, which is God-given at conception, might have an effect on the mother's mood during pregnancy.
*Hmmm.... Interesting thought. Note to self: Maybe I could research this in a bit more depth when I eventually start my midwifery??*
In any case, expecting Thomas was fairly 'textbook' and enjoyable. Here is an entry taken from my diary, written in May 2002: "over the last 2 years or so I have discovered 3 ways of keeping depression at bay - spend time reading the Bible, praying and worshipping God; keep busy, get 'out'; and get pregnant! Although this is only temporary and has downsides to it..., it feels pretty great." It seems astounding to me, now, that this is how I felt, 6 months into my 2nd pregnancy! That I should see pregnancy as an antidote to being 'down'!
And this was to characterise the next few months as well, as I came to full-term, delivered, and started to get to know my Thomas. My experience during this time was one of joy, purpose, and contentedness. I remember it as a time in my life when I was anything but depressed. And this, believe it or not, continued well after Tom's diagnosis...
Friday, 3 October 2008
I will talk about my pregnancy, Tom's birth, his diagnosis, his early childhood and development, and what life is like on a daily basis; I would also like to talk about my feelings and opinions on how disabilities are handled by the community that surrounds me, by society at large, and by the government - although I am NOT particularly politically minded, and do not wish to embark on some kind of vendetta against those who do their best to rule our country. I desperately want to see attitudes to DS and other disabilities change, because in spite of society's concerted effort towards so-called 'inclusion', what I see around me is anything but inclusive a lot of the time! And this needs to change - for the good of society itself, as well as that of those who are 'different'.
As you can see from the above photo, Tom and I are incredibly close...and always have been. Cliche as this may sound, he is a precious treasure which God has entrusted to me, and I am honoured and humbled to have been chosen to be his mummy. I know Mark (Mr Wibbs...!) would completely echo this, and agree that we are immensely blessed to have Tom in our lives.
In the early days, we were faced every day, sometimes several times a day, with having to tell people that Thomas had recently been diagnosed with Down Syndrome. The most painful thing about that was having to watch people's facial expressions change, to eventually settle on something that looked like pity tinged with sadeness... Especially slightly more 'senior' people. Many times, I had people kindly and compassionately touch my arm, and say "oh, I'm sorry"...
I don't think I can find words adequate enough to describe how angry, and upset this made me feel!! Even from very early on, even when I was still in shock from the diagnosis, my whole being wanted to scream at those who were sorry for us.
I even remember saying to some people, "No, don't be sorry! We're really NOT sorry; we're a little shocked, but mostly quite excited... And certainly not upset or resentful. God knows what He's doing..."
Thursday, 2 October 2008
Some of my blogging friends are taking part in this challenge and I thought, "well...why not join them?"...
I have LOTS to say about Down Syndrome, and am really looking forward to being able to do my 'bit' in raising awareness of this condition! I'm going to relish sharing glimpses of my life as Thomas's mum, as it is a priviledge that not many people have, to raise a child with Down Syndrome. I'm seeing it as an opportunity to celebrate something that would more commonly be 'mourned' by those who don't know.
So please - join me! You are welcome to read, comment, or lurk if you'd rather (although I'd rather you didn't!!) - and in the process get to know our rather delightful, beautiful, special Constant Sunshine...
*ps: this, incidentally, was my 200th post!!!! Whoa!!! Let's party...!