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.