Category Archives: Life as we know it
So, it’s been mentioned in one of our many recent appointments, that seeing as D enjoys and works well with computers, we might look into getting him an iPad. It’s incredible, the sort of specialist apps that are available for children on the spectrum – I’ve been Googling a lot this morning. But to be honest, I simply can’t afford to get one for him. I even looked into the few mobile phone contracts that are offering the iPad as a ‘free’ gift. They’re still pretty expensive, and besides, I’m stuck with my (rubbish) provider until May anyway.
After a lot of searching through forums, I stumbled upon a link for Smile for Life; a children’s charity in the UK.
‘Based in the North East, Smile For Life primarily helps children from across the North East of England and Scottish Borders. Our vision is to be approachable and accessible to anyone, from any walk of life where our support will make a real difference to a childs life.’
I usually don’t expect charity of any sort, I hasten to add. But this is something I really think would help D, especially as we move forward with new methods of communication. And I thought it was worth mentioning, for anyone else who might find the financial climate a bit chilly.
Even without this sort of help, though, there are a number of handy online resources. I rely upon several, for home schooling. Here’s a couple that have proven popular!
Allow me, first, a smug little chuckle.
Then hang around while I cry uncontrollably for an hour.
I’d recommend stepping back when the rage kicks in.
Apparently I’m not so different from my son, when it comes to coping (or not) with complex emotions. Do you remember my post from way back in July, regarding the doctor who refused to refer us to a specialist group, for want of an ‘official diagnosis’? Well, as it turns out, that doctor was in fact the Head of Paediatrics at our local hospital.
It also turns out he had his head up his arse.
I can only assume it was down to having a strip torn off him for releasing information about Twig to his father, over the phone, while we were in the middle of a lengthy and bitter court battle. Explain to me how exactly one can prove identity over the telephone? Besides which, this bloke had never even met us at this point, so he was completely unqualified to be saying anything!
And yes, it was brought up in court. A claim that I was ‘making up’ my son’s condition in order to be difficult and delay proceedings. Yeah, right. I’d been trying to get rid of these people for over three years! Nice angle, though; using Twig’s condition as a method of proving how unfit I was to be his primary caregiver.
There’s no phrase more fitting for this recollection than, “Bitch, please.”
Anyway. As I was saying the doctor who barely knew us and who got a stern waggy finger from me, oddly enough, didn’t feel like giving us any help. At all. I wasn’t surprised, and I’ve really passed the stage of being disappointed. Nearly seven years, and the only support we’ve had has been either hopelessly flawed or just too expensive for me to keep up for any length of time.
A few months ago, Twig’s ‘proper’ doctor, who I adore, finally returned from maternity leave. As someone who’s actually familiar with us, and with some measure of how well he’s developing, or isn’t.. she agreed to refer him for assessment at a Specialist Unit. Strange mixture of reactions, at that point, for me…
Sorry, how weird, I had to pause to read the mail, which included a summary letter from her, from our last appointment. Ha. And my mother in the other window asking ‘do you still do that blog thingy?’
Go away, universe!
So. Long story short, Twig was observed and assessed by an entire team of people who specialised in the spectrum. Not random Joes off the street with their stupid standardised tests and complete lack of adaptability in communication. Nope, proper grown up people for us this time. With one of those fancy two-way mirrors. He had a great time. A room of adults who had a bunch of new toys and actually wanted him to play? Woooo!
Following this, and their own brief meeting, I was called in right away to hear the verdict. I swear, I was more scared over this than any of the times I was fighting in court. A divorce is far less a risk for turning one’s life upside down, in my opinion, than an unwanted sentence on your child’s future. To start with, it sounded unnervingly similar to the ‘teacher’ voice in Snoopy. Then I concentrated on the words.
“..come to the conclusion he is, without a doubt, on the spectrum.”
I hate when people look at you expectantly but that pesky lack of being able to breathe or swallow or think hinders any sensible response.
Then they’re throwing possibilities and suggestions at me. Support Unit. Music Therapy. speech and Language. And the most incredible of all. ‘Normal’ school.
I’d sort of given up, I fully admit, on the idea of my little dude ever attending ‘proper’ school. To think that these people might actually be able to open up his world that much.. I was overwhelmed with gratitude and, honestly, a new sense of hope for the future.
But then the rage began to dawn, on the drive home. Once I’d stopped happy-weeping quietly and Twig was contentedly watching his Backyardigans DVD.
A year and a half. A year and a half since that stupid man refused to help us, out of either sheer spite or laughable incompetence. A year and a half of possible progress for my baby, wasted.
Don’t get me wrong. I always knew I was right. As a parent, you know best if something’s not quite ‘right’. pardon the expression. But when someone can calmly say ‘no’, rather than just lift a pen and sign a name, and that has the knock-on effect of possibly hindering your child’s chances of ever coping in the real world…
Hell hath no fury.
Incompetents aside, it’s a scary/exciting/horrible/amazing time for us. I’m not a clingy mother, and I know, I know, that the chance of going out to school is going to help him in the long run. It’s just, right now, while the ball gathers momentum.. I can’t decide how to feel. As usual, it all depends on how he likes the idea.
What matters is, we got there. Eventually. Despite a few head paediatrician shaped bumps in the road.
Finally, a step in the right direction. I’m sure I’m not alone in being frustrated regularly by the lack of support for the parents of children with Autism or an ASD, financial and otherwise. Hopefully this is the first of many institutions who will accept responsibility and set the standard for others to follow.
US health insurance provider Blue Shield will now provide parents with funding for applied behaviour analysis or behavioural intervention therapies. Read more here. With arguments that these services are not a therapy or a treatment, insurers have settled their disputes according to California Law.
Now, where I live we don’t actually pay for medical treatment, per se. But the struggle to get it at all remains the same. Professionals who are often to swift in sticking an imaginary label on your child’s forehead, are less forthcoming when it comes to ‘what to do next’. In personal experience, one paediatrician dealing with Twig (briefly) refused to refer us to an Autism Support Group, because he wasn’t diagnosed officially. When I asked him to provide a diagnosis, then, he declined, saying they weren’t able to. So, I pointed out, not particularly politely, because they were failing to pinpoint an exact term to explain my child, I had to just accept the fact that I was to be isolated from the few support groups existing in the area. As if the parent’s job wasn’t hard enough!
Yeah, that guy didn’t last long.
Every ‘service’ we’ve tried, I have had to hunt down on my own and fight to get into. And, in most cases, fund by myself. The group speech therapy, where the ‘leaders’ gave up after five minutes and left Twig sobbing alone in the corner while they dealt with the easier, ‘normal’ children. The individual language therapy, where the so called expert refused to actually listen to what I was describing to her, then wondered why emptying a box of toys onto the floor and immediately asking Twig to leave them and sit at the table would cause him distress. Moron.
Not everything has been a disaster, though. Music Therapy, after perservering for a few sessions, was a huge hit and seemed to really help Twig when it came to expressing himself via means other than speech, which is his real weakness. It was, however, too expensive for us to continue. More recently I’ve discovered that horseback riding seems to relax him and help him to focus, so we try to do that regularly.
Anyway, back to the point. Support. It’s sparse, often expensive and usually difficult to find. In a society that provides help for everything else, particularly self-inflicted problems such as smoking or excessive drinking or even trouble sleeping, how is it that Autism and ASDs have been overlooked for so long and, unfortunately, continue to be in many parts of the world?
I’m optimistic that this is a major move forward in helping society in coming to terms with the condition that dictates every aspect of life for us. It’s about time.
A well-written and insightful article in the Guardian yesterday, by Dea Birkett, got me to thinking. You can read it here.
Officially, Twig’s condition remains undiagnosed. Maybe because he has a mixture of traits and we’re dealing with a broad and vague scope, in Autism Spectrum Disorder. Or maybe because the professionals who have dealt with him are just unwilling to label his condition – a rarity in today’s society, I’m sure you agree.
Though I never have, as yet, had to deal with the cataclysmic ‘your child has…’ moment in the doctor’s office, having instead dealt with a very long-drawn out and inconclusive version over the past 4 years or so, I still find that my world view has shifted when it comes to thinking of the future.
There are moments we all absently consider or daydream about, with regards to our little ones. First day at school. First date. First job. First home (and our chance at around the eighteen year mark to take a holiday where we only pack for ourselves, rather than stuff a suitcase with toys, jigsaws and other distractions, while our own wardrobe is downsized into a tote).
When you come to the realisation, no matter the time-scale, that your child is ‘different’, I think it’s these sort of things that immediately leap to mind. Some skew. Some wither. Some, frankly, just have to be let go. It’s most certainly a grieving process, for many of the hopes and dreams you had… and they weren’t even for yourself.
And what of yourself? More than likely we all already had an idyllic view of how life was going to be as a parent; joining in on all these important landmarks, taking photos, recording videos, scrapbooking every fragment of the life you’ve helped to build. What are you supposed to do now? Not only is your child’s life suddenly looking very different, but your own role is now far from defined.
Will you become a full-time carer? What will happen if, by the time they reach their late-teens or adulthood, they’re not capable of looking after themselves? And, as usual I’m going to come out and say one of the things I hope many think and I have to be brave enough to verbalise… will they ever find love?
I’m fortunate with Twig, in many ways. Whatever it is that makes him different, I don’t consider it a flaw. Who’s to say his way is wrong? He doesn’t remember yesterday, he doesn’t worry about tomorrow. Every day is an adventure and a happier, more delightful child I have yet to meet. Yes, I’m biased. But strangers have commented on his beautiful smile and that belly laugh. He’s photogenic beyond belief. He likes nothing better than to make me smile and he does so regularly.
I know he’s amazing. But the rest of the world? Suddenly their point of view becomes, whether we like it or not, far more important than it might have been otherwise.
A meltdown in the middle of the supermarket, for example. Now, we’ve all seen it. The harassed mother, trying and failing to pacify a tantrum-thrower in the middle of aisle three, by the crisps. The standard conclusion? ‘Spoiled brat wants crisps.’ With a child like Twig? It might, in fact, be a simple case of the crisps having been laid out differently than the last time we visited.
Joe Public, of course, doesn’t bother to wonder. Most – and I can say it because I used to be one of them – will continue on their way, perhaps with a tut or a roll of eyes, certainly with that infamous smug glow that comes with the thought ‘I’ll be a better parent than that.’
I’ve seriously considered printing Twig a t-shirt that says ‘I’m not badly behaved; I have an ASD.’ Then again, I’ve also considered bashing people with a convenient baguette, just for daring to look at him strangely.
We do the best we can. We adjust our lives to make theirs better. If society wants to continue judging ‘different’ people negatively, let them. I’ll continue bracketing them as short-sighted and stereotyped.
I’ve tackled the issue of ‘mom guilt’, as Dr Leah calls it, before. But it’s a recurring one, for me at least.
An article tweeted by Carers UK, even though it was to do with an elderly couple, offered me some comfort yesterday. You can read it here. I suppose, as well as the mom guilt, I have what I’m going to call ‘carer guilt’. And ‘teacher guilt’. Even ‘housekeeper guilt’. In fact, especially housekeeper guilt. It looks like I live in a small local branch of Toys R Us circa 1987.
And that’s before Twig does his infamous impression of the Andrex puppy with my bulk-bought loo roll.
Anyway. Every victory in our house, no matter how small, is a major thing. In the last few weeks (I can use it as a timely excuse for the lack of blogging) we’ve partially cracked potty-training (thanks be to jeebus) and started reading. Alright, that might not seem groundbreaking to some of you. But throw in the mix that my little genius has an ASD and I’m homeschooling him singlehandedly… and that I have cream carpets. What the hell was I thinking?
So yes, the good times are good. But the bad times still drive me up the wall. Like when the mood is set for the day by a hissyfit because a cookie is broken in half. Aren’t they meant to pick up and reflect our moods, rather than the other way around?
As the writer of the aforementioned article says, “I’m not the most patient person in the world.” I’m really not. Sure, it’s nice to take the credit for five minutes when Twig accomplishes something that is, by his standards, amazing. It’s even nicer to realise that hey, I actually did teach him this all by myself! I’m not a failure as a mother/teacher/bathroom assistant.
Just as a housekeeper.
Sometimes, too, it’s gratifying when new acquaintances, or even old, marvel at just how many professions you cram into 24 hours and you brush it aside with a serene, saintly smile and murmur something about how it’s all worth it. Then you go home and find out Picasso’s latest masterpiece is a mural all over your kitchen cabinets.
Baby steps. Baby steps. For the parents, that is. The kids have it all figured out. A conspiracy if you ask me.
Apologies for the loooooong absence. After seven years of fighting, trans-atlantic travel, lawyers, phonecalls, emails and Facebook stalking, I finally got divorced! Granted on the basis of no defense from the opposition… aka, as soonas I even mentioned they might like to consider some financial support for the child they so desperately wanted to remain in contact with, you couldn’t see them for dust. They just stopped instructing their lawyer.
If only I’d thought of that seven years ago.
Regardless, now that the metaphorical dust has settled, I’ll return to blogging the experiences Twig and I have had! Thanks for all your support and encouragement everyone… the future is looking far brighter.
Well, one large mug of coffee down and I think I’m semi-coherent. Despite Spongebob chattering away in the background. The actual show, not a codename!
It seems as good a time as any to explain the saga of Twig’s diagnosis, or lack thereof, before the jitters set in and I’m forced to track down cigarettes to balance it out. I’m very health-conscious, as you can see..
So. The first real inkling of anything amiss actually came from a surprising source; Shovel’s mother. Let’s just call her Miss Ellie. If you ever saw Dallas on TV, that might give you a sneaky insight. She decided, in that authoritative way that only nosy mother-in-laws seem to truly possess, that Twig had autistic tendencies. And my reaction? I couldn’t say if it was typical, since I’ve no real point of comparison. But I was immediately, guns blazing, on the defensive. How dare she imply there was anything ‘wrong’ with my baby?
The situation didn’t improve when she took him to her family practitioner, without my knowledge. Though he agreed (supposedly), I didn’t put much stock in the claim. That woman could strongarm Saddam Hussein into a needlepoint class, if she felt the need. She’s that scary. Plus, she has a tendency to hear what she wants to hear, which usually manifests itself as agreement.
Twig was just about to turn two, at the time. Despite our predicament (I’ll dicuss that in another post) he was a happy child. He made eye-contact appropriately, he was affectionate and empathic. Alright, so he wasn’t showing much interest in verbal communication. But frankly, neither did I. We barely saw anyone else, and we understood each other perfectly well. Yes, obviously that’s now a source of ‘mommy guilt’. I never stop looking for them.
By the time our mute muse was two and a half (funny how those fractions are so important, when it’s a child), he and I were back in Europe, outwith the influence of the Shovel family. I had expressed some concern to my own doctor, who emphatically discounted the idea of autism. But he organised an assessment, agreeing that something certainly wasn’t quite right.
Said assessment involved a team of experts in various fields assessing him over the course of a few hours. Speech therapist, paediatrician, physiotherapist, you name it. And all in all the results were fairly depressing. ‘Yes, there’s something wrong. We don’t know what, or if it will improve. Oh, and by the way, your kid’s currently operating at roughly the level of a child a year younger than his actual age.’
Spiffy. So now what?
Fast-forward a few months. Twig’s enrolled in Music Therapy, and Speech and Language Therapy, and has his own Play Tutor doing home visits. Music and Play, great. Whether it helps or not is anyone’s guess, but he enjoys it and that’s the main thing. It introduces him to new situations and experiences, with people who know how to handle the meltdowns. Speech and Language Therapy? Not so much.
I had to give that particular lady the boot. Not only was she stalwartly refusing to listen to me, but she also didn’t seem to grasp the fact that Twig was different. Her standard methods didn’t apply, didn’t work, and more to the point they ended up distressing him.
Better than the group therapy, mind you. When he had a meltdown there, they left him sobbing in the corner for twenty minutes (half the session) so they could focus on the ‘well-behaved’ children. Disturbing how much that could actually teach him about society.. be ‘normal’, or be excluded. Charming. As you can imagine, I did not deal with those so-called experts very politely, after that.
Another year or so down the line. After some horrendous experiences ruling out physiological aspects of his condition – sedating him so blood samples could be taken, for example – we were still no closer. Nothing seemed to be actually wrong.. it’s just something wasn’t right. And though I saw improvement in him, almost on a daily basis, he wasn’t where he should be on the all-powerful spectrum of development. So what gives?
As it turned out, the initial observation team had managed to overlook some crucial points. He still sat in the ‘W’ position. He likes running and crashing into things. He never sits still. Those might seem trivial things, but it’s eventually been noted and brought to our attention. Not by some miracle doctor in our health system, but by a family friend. Who just happened to be certified in Pediatric Neurodevelopmental Therapy.
Here’s a couple excerpts from the report she wrote up for us.
A very distressing sensory processing deficit for any parent is the area of touch. The difficulties seen in Twig’s profile include low thresholds for grooming, being messy, having others stand near him. He is greatly bothered by normal physical interactions such as having his hair or nails cut. These must be done while he is asleep to avoid screams. He hates to be physically messy – food or dirt on his body. He demands it be removed immediately. He is bothered by being touched by others and may rub the area. On the other hand, he has a high threshold for learning from touching objects and people – he does this more often than children with integrated tactile processing.
Twig’s behaviors seem to be explained by a poorly integrated sensory system that is inhibiting his efforts to learn about his world. Children demonstrating similar behaviors describe various environmental stimuli (sensory input) such as light touch or even clothing tags as burning, hurtful, scary, feeling like “fight or flight”; deep touch as comforting, more easily felt. Sometimes they may say they don’t notice what you or I may be intensely annoyed by, such as intermittent background noise. Adults who suffer with this issue say they “wish their skin could be removed”. Children learning to function without innate integration of environmental stimuli operate with definite deficits. They are aided by a predictable world so learning, play and socialization can take place without the need to seek or avoid input.
Why didn’t someone else pick up on this?
Anyway, as it turns out, our health system refuses to provide us with further help, not even contacts for local groups.. because I have chosen to home school Twig. Of course I have, there’s no way he’d cope with starting school right now. Let alone the fact that the nearest placement turned out to be less than suitable. We were assured that Twig could have his own aide, during classtime. Further investigation revealed that this person was entirely unqualified, just some Joe off the streets.. which to me implies their job would be to keep him out of the way, again, while the ‘normal’ children got on with their edcuation.
That’s not the experience of the world I want him to have.
To him, every day is an adventure. He doesn’t worry over what happened yesterday, or what might happen tomorrow. He doesn’t get self-conscious, or embarassed – you should hear him laugh – and everything is treated with the same amount of awe and wonder as it was last week. Now tell me.. if your kid was that happy, without fail.. would you conform to the demands to force him into the cookie-cutter ideal of ‘normal’?
After 3 years, countless court appearances, numerous child welfare hearings, several shouting matches down the phone and too many tears shed and beers drank to keep track of..
My divorce has been granted.
A lot of those ‘self-help’ guides I’ve seen warn that you might go through some odd emotions, once you reach this milestone. I can only count one, even if it’s hard to describe: gut-wrenching relief.
Miss Ellie and Shovel have spent thousands of dollars on this case, thrown everything they can think of at me, changed lawyers many times because they didn’t like not being in full control. And, in the end, it’s gotten them nowhere at all. Well, that’s not entirely true.. it’s gotten them so far beyond my circle of trust ™ that they’ll never ever be back inside. And while I’m sure some of you out there may disagree with my point of view, they will never see Twig again.
They can afford the costs of putting us through hell every 6 weeks, but can’t muster the funds to visit? I shouldn’t be surprised. They apparently couldn’t muster the funds to send the kid a birthday or a christmas card, either. Ever. Not once.
Way to prove you care, guys.
It was always about winning, and Twig was just useful leverage. But no more! Finally life can move forward, outwith the sayso of those people.
Gut-wrenching relief, indeed.
It often irks me how certain situations are handled by legal systems. How is it, that in a case that centers around the welfare of a child, they can be detached from the emotional and psychological effects of the decisions they can make so candidly according to the clear-cut, bulletpoint lists in their precious ‘book’? One circumstance cannot be weighed against another, just as the quality of a parent or their importance in playing any role can be. Read the rest of this entry