Tuesday, 9 July 2013

Looking back, looking forward.

I was looking at a few things tonight and I thought it was worth posting this.

I recently heard some horrific things about abortion post 20 weeks and how it can be performed and I couldn't help but think that no mother would subject her foetus to that kind of death,  no matter what its health concerns and prognosis. It was so distressing to me I'm not going to detail it here. If you really want to know, I'm sure you can find out.

It's a rare parent of a child with Trisomy 21 thesedays who would consider abortion. Thesedays it's those who decline the genetic screening because they wouldn't abort under any circumstances or those who choose to go ahead with their pregnancy despite their increased risk or diagnosis who deliver babies with Trisomy 21, excepting that very small percentage who have a false negative.

There are a few things that bother me about the whole genetic screening process.

Firstly, that there seems to be a push from inside the medical profession to find and terminate all pregnancies of babies with Trisomy 21. The attitude of the GP who thought I didn't understand the reason for genetic testing when I said I didn't see the point is indicative of a line out there coming from somewhere that it's a helpful service that we would all of course want to take advantage of. (Not so.)

Secondly, when a person receives a diagnosis or an increased 'risk' (or more appropriately 'likelihood') of a Trisomy 21 diagnosis, they are referred for 'genetic counselling'. According to reports from those on the facebook groups of which I am a member, many of these sessions amount to bullying from medical practitioners or genetic counsellors who try to convince the mother/parents that they are doing somebody a disservice (the baby, themselves, society) by carrying their baby to term and delivering as planned. Sometimes the patient's own practitioner keeps bringing it up, visit after visit, well after the 20 week mark. (A baby can survive at 22 weeks, I know of one who did, not sure exactly how early is the earliest baby to survive ever.)

The information given to these parents is not balanced or correct. They are given a bleak picture of a hopeless, 'mentally retarded' (meant as mentally slowed, not as a derogatory term, but thesedays insulting nonetheless), utterly dependent social outcast who will be a burden to all those around him for the rest of his days and who will either be plagued with illness and die early or outlive his parents which creates the worry of who will look after him when they're gone.

Maybe once that was a real picture, but not anymore. The achievements of adults out there who live satisfying lives despite their triplicate of chromosome 21 are mounting. When a person owns his own successful business I don't think we can call him a burden.  A University would not risk their good name by bestowing an honorary PhD on somebody who was mentally deficient. Adults all over the world who carry Trisomy 21 are out there commanding the respect of their peers, despite the way they look, as are 'disabled' people of all kinds, worldwide.

The even more brilliant thing is that the therapies available now are the best that have ever been. There has never been a better time to welcome a child with Trisomy 21. If ever there was a time to be scared, which mothers of children or adults with Trisomy 21 will tell you there never was and they wish someone had told them that at the beginning, now is not that time. You can expect hard work, but a child born today with Trisomy 21 has so much opportunity to live a rich and full life as do we all - and yet not all of us manage that.

The information given to expectant parents should be balanced. They should have the opportunity to meet parents of babies or children with Trisomy 21 and adults who have the condition.

Next, the wording of the whole experience needs to be thrown out.

There is no 'risk' of Trisomy 21. There is a chance or a likelihood. Like there is a 'risk' of brown eyes.

Down syndrome is a dying term as medical professionals realise that it's a stigmatising label which doesn't help to treat the individual symptoms. It's Trisomy 21. They don't even know what the chromosome does, since the symptoms are so varied between individuals.

You terminate a pregnancy, you abort a foetus, or an embryo. You don't abort a pregnancy.

It's not pro-life or pro-choice. Choice and life are not opposites. It's pro-abortion or anti-abortion but even those points of view are rarely black and white.
(Pro-life or anti-life is a bit silly)
Let's not be weaklings about this subject. If a person is willing to end a foetus' life, call a foetus a foetus and an abortion an abortion. Don't say you're aborting a pregnancy because you're pro-choice. It's a grisly, horrible business. Doctors don't enjoy it. Mothers don't either. Let's have some guts one way or the other rather than glossing over the grim bits with euphemisms designed to make mothers feel less responsible by engaging in a very blurry act. I am not saying it is wrong here, I am saying that we need to confront what we are doing. We're dealing with life or death.

When the idea of having a child with Down syndrome entered my thoughts, it was because of a couple of anomalies in my ultrasound report. It made sense to me that if I had polyhydramnios and renal pelvis dilation in the foetus it was more likely than not that the cause for both would be the one thing. I googled.  I found a medical article in a sea of not much which mentioned briefly that it could be a soft sign for Trisomy 21. (A soft sign is also called a marker)

The thought of my baby having this condition was unthinkable. I could not imagine it. I knew two people with the condition. One, a lady in her 40s lived a happy life but to be honest, did not command a great deal of respect from those I knew who knew her, including me. The other, a 6 year-old boy, was highly regarded by friends, family and strangers who knew of him. I knew it would not be terrible, but still I found the prospect scary.

When the surprise came I just went with what I knew, which was the modern version. I knew it wasn't hopeless, but that it was going to be hard work.  I didn't expect how much it was going to change my life for the better. I didn't expect the rewards to be so great. There are so many soppy things out there about how a person's child with Down syndrome is their greatest treasure and how they have a smile that lights up their life 100 times a day. I honestly thought these people were deluded and creating a lie that they could snuggle up in and live in their own little fantasy world telling themselves that it was going to be alright, over and over again.

Here's what I've learnt so far.
My child is beautiful. Regardless of her Trisomy 21-related physical characteristics, she's a cute baby and she gets comments wherever we go. (No cries of 'Dear God, what IS that THING?' from anyone so far.) Aside from her face, she's a beautiful being who is very loving and so very understanding and patient. (And 'they' are not 'all that way')

The rewards really are that great.
Over the last six months I have been privileged enough to meet scores of other parents who are all bringing up children with Trisomy 21. They are for the most part the loveliest group of people I have met and the groups feel like family.
I have been introduced to therapies that can help not only my youngest daughter, but my older two and my husband too, with seizures, sleep walking, repeated tripping, hypersensitive hearing, reading problems....
I have experienced one of the extreme ends of life in the hospital with other parents of sick children and I have been privileged to access a new perspective on life. As it is when you have children and realise that life's not all about you, when you have children whose needs are extreme, you further realise that what's most important is that they are alive, then their ability to approximate normal and anything further than that is theirs to achieve if they want, not if you want.
Maybe it's just me, but I have also regained the ability to see the person inside the 'disabled' body, regardless of how they look. This means that so much more of the world is open to me and I feel much more comfortable in life.
I also appreciate that my lot in life is so much easier than that of a relative whose child has cerebral palsy, for instance, or a mother whose child hates her and wants nothing to do with the family, or whose child is terminally ill.
My family is now eating much more healthily because we have to. We're likely to enjoy the benefits of this for many years to come.

Without brushing a person off with well-meaning cliches like 'they're so loving' or 'they're so well-natured' like a breed of dog, (and I heard a great line by someone the other week, 'my child is not a puppy. He is not here to fill your life with gladness' or words to that effect), it's not only just 'not that bad' to have a child with Trisomy 21, it's basically just having a normal child who looks a bit Asian and has some developmental delays, maybe a speech impediment - which is really not that unusual!! (And possibly some other medical problems, but they're not insurmountable.) Any inbuilt negative reaction society has to people with Trisomy 21 are ours as a society to change, and this will happen over time, as more and more adults with the condition appear out and about living their lives, working alongside us and commanding our respect.

The things I was reading tonight were comments made by pregnant women on forums who had seen the very same markers as I'd seen and had been told it could indicate a chromosome disorder but not which one - odd. They were freaking out at the prospect of a sick child and looking for stories that it could be normal, which was what I looked for. I looked for ways in which it could turn out normal.
If it had, I guess life would be simpler, but looking back and looking forward, I'd be giving up more if I had the same old normal scenario. I'd be living a life with less challenge. Is that what we really want?

I really think that if an expectant mother was given a true picture of life with a child who has Trisomy 21, she would think even longer and harder about ending the life of her foetus. I suspect that many more would choose to forge ahead and see what life would bring. It is not my place to judge anyone for their decisions and I do not presume to, but I do think that a truly informed decision would be a different one to a partially informed and biased one.

I also think that if I was in charge of genetic counselling, I'd just get the parents to google the following phrase: "I regret having my child with Down syndrome".

That is all.

Wednesday, 3 July 2013

We're back!

Hi everyone!

As I suspected, my every second has been accounted for since the course, so this is my 'very soon' post about the Institutes for the Achievement of Human Potential "What to do About Your Brain Injured Child" course. (This was brought to Melbourne by the fabulous people at Grow Foundation.) http://www.growfoundationforkids.org.au

Before I get into it, this course is named after a book. The book was written many years ago in response to a huge demand for the above Institutes' services and the realisation from the founder that parents are a child's best therapists. It was found that many conditions with specific names (such as Cerebral Palsy, Autism, ADHD and even Down Syndrome, among many others) responded to the treatments that had been effective for stroke patients and the like.

Rather than referring to each condition by its own syndrome name, which didn't help treat the condition, they found it more helpful to refer to everyone as 'brain injured' or 'hurt', because treating them as such more often got them better. I've heard some parents react to the name negatively, but there's really no need.

Anyway, I decided to stay over at the hotel where the course was held, even though it was in my home city. The idea of getting out the door before 7.30 on a school morning, fed baby in tow, after arriving home from each course at about 8.30pm unfed seemed a bit far fetched. That was a really really good idea. There was homework every night and I struggled to get to bed before midnight most nights!
A few of us at the course had met previously online via a facebook group and it was like high school, with homework posts going on between us from our different hotel rooms.

The course itself was A-M-A-Z-I-N-G.

They talk on the first day about how the brain grows by use. By about the end of day 1 I could tell my brain had been used, because it just felt bigger. It seriously felt like there was less room in there. By the end of the week I could have sworn my head circumference had increased.

The course is done by video. They have recorded lectures given by key personnel at the institutes, including the founder, Glenn Doman, who sadly passed away in May this year aged 93. I have heard that he was lecturing up until the end of last year, which is a mighty effort.  As far as I know, the video version is taken on tour around the world to ensure that the course is the same no matter where you do it.

Now I have to say that this was a big learning experience for me, since I have studied a lot about the mind, but never given much thought to the brain and how it works. Many people and disciplines confuse the two, but I'm certain that they are not the same. Either way, this course simply deals with the brain, not the mind. More like a person's function, rather than their personality. It was fascinating.

Glenn in one of his lectures mentioned that one time a man from Australia attended the course and wrote to him afterwards saying that he had worked out that the course could be delivered in a fraction of the time if one simply removed all the stories.....but the stories are what makes the course.

The sheer number of good news items and miraculous anecdotes is brilliant. There really is hope everywhere you turn. It's almost impossible that nothing could be done for a child whose parents are willing and on board to run the program the way it should be run.

So I went from being a complete brain-novice to knowing the names of the basic parts and how they seem to relate to development, then working out approximately where the injury is, then working out what's needed most urgently in terms of a program and working out how to get started.

There are so many factors to consider in terms of the environment and Jacinta's nutrition. We'd started on this already, quitting wheat a couple of months ago and cutting right back on dairy. When you really stand back and take a look, the food we all eat thesedays and the world we live in is SO toxic! 100 years ago, if you'd showed someone a packet of Cheezels and told them what was in it, they'd have looked at you like you were mad for eating them and politely declined one.

So it looks like we're going super-hippy on the foodstuffs, which is not that bad really. As my husband said, "It can't be all that bad if it means I get to eat steak every night.".  It's also got me realising how my mum was again ahead of her time. The one thing they said on the food stuff was that if we did nothing else, if we ignored every piece of advice they gave us, we should at least just throw out all the heated oils we were using in food and not cook with anything except coconut oil. Just get cold pressed olive oil for salad. Apparently these oils go toxic when they're heated and even the extraction process heats them enough to do this.

I was cooking the other night and thought "I could actually save the fat from the meat I cook and use it again in the next meal, but how would I store it?", and then recalled an image from my childhood of coffee lids with fat in them in a little row next to the sink. This from an age when Mum only used olive oil for salad dressing, before we convinced her to use it in cooking. Bloody know-it-all kids!

So now I own a packet of quinoa, and have pronounced the word several times loudly and therefore am an expert. I have tried some experimental cooking, the least successful resulting in a kind of chocolate scrambled egg with some fairly raw quinoa through it, the most successful being a sort of maple syrup pudding with dried fruit which was quite delicious, but being the product of not-quite-terrible things that are still being evicted from the pantry will probably never grace my kitchen bench again.

I have also discovered that although I take my tea strong, with a little milk, and always will even if I never have a sip of milk again,  a weak black tea (particularly with some lemon and a little sugar) is actually quite good!

I'm even amazed to see that in our house, where we used to go through a good 4 litres of milk every couple of days (we'd buy them in 4s from the 7eleven where it's 2 for $5 and you can run in and out in 20 seconds) we've now used up the last of the last cow milk and no-one's much batted an eyelid.  My eldest polished it off last night without so much as an 'oh my goodness, last cow milk ever'.

It helps, of course, that we seem to have discovered the cause of those seizures mentioned in the first blog post which have been coming and going a bit lately, and that the remedy seems to be eating a strict diet of non-allergenic foods and water (plus rest).

Apart from the food stuff, we have to keep the house clean - which is a good thing, because I really want to but if I have to it's more likely. I've ordered one of those little vacuum robot thingies so I'm sure that will keep us entertained as it scuttles around the house of an evening picking up crumbs and hair ties.

I need to keep Jacinta on the floor as much as I can to give her a chance to catch up mobility-wise. It's been fairly widely acknowledged that Jacinta's well advanced in terms of social, audiological, visual, language development, but that mobility is delayed probably because of the heart issues and being on her back like a stranded turtle for half her life.

I'm brainstorming ways to keep the floor warm, having never realised that the reason my feet get so cold in winter is that the floor is actually much colder than the rest of the room! Five minutes after I put her down, she's freezing. I found a fluffy sheepskin at IKEA last week and it's brilliant for the short term. It's the wrong surface for moving, but at least she can be down there and keep warm, plus she can grab onto the wool strands to pull a bit and it's stimulating all her nerves wherever her skin touches it. Keeping her safe from her siblings' displays of love and affection is the next challenge!

Then there's the whole crawling program and the reading program, which is very exciting. I want to get a lot of this going with all three of my daughters.  We made the first card for our reading program at the course and took it home.
Not happy with the J or the t....
Then there's the swimming program. There are all sorts of things we can do, a little bit at a time many times a day, to get Jacinta rocking and rolling - or even better, crawling and walking!

One very interesting thing which I don't think happens a lot among those who attend the course is that on evaluating Jacinta's areas of ability (according to the chart which shows a person's developmental profile), she came out ahead overall for her age. This puts her in a category other than 'brain injured'. My goal when she was born was to apply what we could to keep her ahead of any delay that was meant to happen. So far so good. My dream when I went to the course was that she'd be not that bad and not have to have a really full-on program and we could do it in a few hours a day.  Being that she fits into the category of a well child (for now), and she's under 1 so a couple of the things are for bigger kids, it looks as though we will get away with doing everything we want to do with her and probably in a few hours if we want to do it that way, which is good since I want to include elements for all three children.

Also, it needs to be said, the Institutes are adamant that they will 'fight for your right to say "no"'. They want you to do the whole shebang and get the best possible results, but they're not about to guilt you into doing anything you can't or don't want to do. If you can do one thing, they'd prefer you do it right and consistently then trying to do lots and doing it badly or sporadically, is the impression I got. This was a big relief, to know that I am the master of the schedule we set for Jacinta. Possibly the further we get down the line, the more she'll need and the more we'll have to include, but it's a nice gradient for us at least.

So for now I'm preparing to become a social pariah, bringing my own milk wherever I go and declining foodstuffs at every turn. Thinking wistfully of the holiday we had just two weekends ago, where we ended off with a trip to the Yarra Valley Chocolaterie and Ice Creamery. The girls played on the sprawling lawn, I had to chase after them to stop the 2yo heading onto the highway - leaving my baby with a kind stranger, so much fun. Actually, the thought of chocolate and ice cream makes me feel a bit sick, but still I can dream of this wicked utopia.

We told my husband we'd take him there next time. Maybe not.....