Autistic Spectrum Disorder

True to Yourself

16/11/2015 by MrsSavageAngel Leave a Comment

We first saw the paediatrician in September 2014, so although we didn’t get Oscar’s diagnosis until February this year, it’s been just over a year since the word and the possibility of Autism entered our lives.

I say Oscar’s diagnosis, and of course it is his, but in many ways it’s also ours. Ours as a family, mine as a mother.

I’ve been thinking about identity a lot lately. Being “who you are” or “who you want to be” and being “true to yourself” seem to be buzz words I see everywhere I go at the moment. And the idea is a nice one. Not pretending for the sake of others, living the life you were meant to or that you dreamt of. It’s all very noble. But what happens if the life you want and the one you’ve been thrust in to are two separate things?

Last year I was finally starting to feel happy in my own skin. I felt I was living the life I was meant to. Gradually the future had started to excite me and my confidence soared. I was the mother I wanted to be and I had visions of where we would go and what we would do, together and apart. And then the A bomb dropped into our lives and things haven’t been quite the same since.

I haven’t been that happy for a while now. First of all I thought it was shock, coming to terms and dealing with my ‘grief’ while carrying on. Then things started to happen. People and agencies came into our lives and support and paperwork and appointments and thoughts I never thought I’d need to have became everyday and it was a whirlwind. Yes, Autism was now part of our world, but we could learn and we could deal with that. Right? And then things just carried on, not quite as before but as everyday as they could be. But I didn’t start to feel any better. And eventually I realised in fact I had started to feel worse. Different, less devastated, but more all encompassing.

I spend so much energy getting through the day, some days I feel like a shell. Empty and drained. And then some days I’m feel like I’m getting it. Like I’m winning, like everything is OK again. And the next day it’s everything I have to get us out the door.

And I started to wonder why I feel so sad and I think I might have an idea. I am not the mother I thought I was going to be. And while I’m sure most of us can say the same (who really is living up to the ideal we had before and during pregnancy, really?), it’s proving harder to accept that than maybe I thought it’d would. Is this sadness down to not really knowing who I am?

I want to be true to myself, I just don’t know who that is any more. I am not the mother I thought I was. Because Oscar is not the child I thought he was.

I’m sure I’ll come to terms with it one day. I’ll accept that I am an SEN parent. That I will live my whole life with a disabled child. I’m just not sure when. And right now I don’t know how to.

Or perhaps I just don’t want to? Because that would be like admitting all this is real.

And then my heart just might break for good.

6 weeks on – our ASD journey

27/04/2015 by MrsSavageAngel Leave a Comment

So, it’s been 6 weeks since we had the meeting where it was agreed my gorgeous, floppy haired baby was just a little different from the other children. 6 weeks since I wept on my husband in a hospital corridor. 6 weeks since we felt one weight lifted and another replace it. 6 weeks since Oscar was diagnosed as “autistic”.

We’re getting on pretty well I think. Oscar’s speech gets better every week. Every day brings new words, new phrases, something else to amaze and baffle me. Three weeks ago, out of the blue, he started to say “Thank You” whenever you give him something or do something for him. Sometimes it’s even “Thank you mom mom”. He’ll even point it out if you don’t say ‘thank you’ when someone gives something to you! He can’t speak but suddenly he’s the politeness police? What the heck? And I say ‘heck’ because that’s another things he’s started doing, repeating the words you really don’t want him too! Like “Oh My God!”. And “Balls!” And the “f” word you never want them to say in front of their preschool teacher! It’s not that I swear all the time, but the fact that I didn’t have to worry about him repeating back what I said, meant I didn’t think to moderate my language ages ago. Like my friends did. Ahh well! At least it means he’s taking it in I guess? Sigh!

His behaviour is getting better and better too. His eye contact has gone from shaky to amazing in just four small months. He approaches other children now, be it friends in the garden, those at nursery or strangers in the park. He’s learnt a simple “Hello” opens all sorts of doors, particularly games of chase. There’s still nothing Oscar loves more than running around, but he’s now allowing other children to get in on the act. Even more amazingly he’s started to play games initiated by other children. Slowly slowly catchy monkey as they say, but last week he was approached at preschool, by a little girl, asked to play a game and he did. I think his TA was as shocked as I was when she told me.

Don’t get me wrong he still gets upset about things. Frustration is clear on his beautiful little face when he can’t get what he wants or do what he wants. But now he looks at me while he cries. And his bottom lip wobbles. He rarely hits himself and the anger goes as quickly as it came. These are tantrums of a toddler. We rarely see the blind panic of a melt down that can take over a hour to calm any more. But when we do, we’re coping with them better. Staying calmer, giving him that safe place he needs. We’re also a lot better at avoiding situations that could push him to that place beyond. We try not to make a big deal about it and that’s helping I think. For example, some birthday parties work for us, others (the sit down and watch kind) don’t. Yet. Give him time.

Yeah all in all, he’s progressing brilliantly. And yet as he gets easier, the stress of him is replaced by the stress of what his diagnosis brings with it. A hundred forms to fill in, a thousand things to read, new people every week, a new language (mainly made up of acronyms), advice, process, meetings. Getting everything set up to support my little guy, comes at a human cost. Me. I tell you what, it’s lucky I was an Account Manager for five years. Little else could have prepared me so well to deal with so many agencies all at once. Plate spinner extrodinaire that’s me. Only this time I’m not getting paid for it. But on the plus side neither do I have to work in Hoxton Square with all the hipsters, so you know, swings and roundabouts 😉 .

I’m not trying to brag here, but I feel like I need to keep some kind of record of the journey, of his milestones that would mean so little to anyone else. Heck ( 😉 ) who am I kidding, yes I am bragging. I’m so ridiculously proud of my baby and how he’s coming on that it’s worth all the forms and all the meetings and all the stress.

Last week someone told me what a polite little boy I had, after he said Hello, Please, Thank You and Goodbye, all perfectly and all in the right place. I didn’t cry, because seeing me sad upsets him, but I was crying inside.

Crying with happiness.

...handsome boy. — …handsome little boy.

Slimming World Update – Week 86/87

19/03/2015 by MrsSavageAngel Leave a Comment

Hi chaps

Yes its me and yes I’ve been silent of late and yes there’s been a really good reason for that (or not a reason at all depending on how you look at it!) Last weeks post didn’t happen, because to be fair to me, last weeks weigh in didn’t happen. We had some news, which I’m not going to go in to again (you can read about it here if you’re interested) that basically threw my head out of the window. I think we survived on takeout and oven chips last week, but I don’t really care that much.

Anywho, I told myself I was going to knock all that on the head come the weekend but that didn’t happen. In fact if anything it got worse. I wasn’t just eating food I would never normally (hello bread my old friend, how have you been?) I’ve been gorging on anything and everything. Even things I’m not enjoying, things I don’t really like or really want. If I was to use the Swan metaphor I was remaining calm on top and stuffing my face madly underneath. I know WHY I did this. Why my behaviour slipped back to emotional state I’ve not experienced in a loooong time. I’m not proud of it. Using food as some kind of gastronomic drug to soothe and self harm all at once. Some people drink themselves into oblivion for the same reasons, but it seems my panacea of choice will always be food.

Ho hum. The fact that I only gained 1.5lb over the past two weeks has astounded me. I’m back to having only lost 6 stone exactly, but I can live with that. What I can’t live with is the way that eating as though the end is nigh is making me feel physically. My mind may be placated, but my body’s in uproar! Basically I feel like shit. My skin’s terrible and I feel so lethargic. The body’s no fool, it knows what’s going on! So, as much as counting syns and being back with my head fully in the game might be asking a lot at the moment, I will be reverting to more ‘normal’ eating this week, if only to get some energy back. And right now, I need all the energy I can get!

Plus I’ve just ordered the coolest t-shirt in a size 14-16 and I’d really like to be able to wear it!

Laters

xxx

To be honest….

16/03/2015 by MrsSavageAngel Leave a Comment

I saw this tweet the other day:

It caught my eye, not because I am struggling to write anything at all( you read my last post right?) but I am struggling to write. When I started this whole adventure, do you remember how raw my writing was? It came straight from the heart and usually with little or no thought. I just sat down with the computer, switched my brain off and just let my soul say what it wanted to. It was amazingly cathartic for me and people really enjoyed reading it. I know they did, cos they told me they did.

When I tweeted Kate back to say thanks for the article she did something I wasn’t expecting. She read my mind:

@KateLPortman: @mrssavageangel hmmm. Why are you finding it hard? Are you struggling to find the words? Or are you fearful? Think they’re rubbish etc?

It stopped me in my tracks.

Because it’s a bit of all these things. I think I have the words. They run round my head constantly and sound great (even if I do say so myself 😉 ), then I sit down to write and *poof* they’re gone. Maybe I am afraid? Of not being good enough to compare. But why am I comparing myself suddenly? I never used to. Maybe it’s of myself, of my thoughts, of what’s been going on in my head. And maybe I’m afraid if I empty my head, I won’t know what to do with the aftermath.

I tried to write it down in January, but it didn’t sound right and anyway, I still wasn’t ready to share it, so it sat there, in my draft folder, gathering digital cobwebs. But now?

I don’t know how to put it, so I’m just going to say it. From the beginning.

If you read me regularly you’ll know, Oscar has a speech and communication delay and this was initially discussed with the Health Visitor back in April 2014. She visited a couple of times and just something about his ways made her suggest we visit a paediatrician, just to eliminate anything more serious than just a work a day speech delay (which I hear are tres common and nothing to worry about). An appointment was made in September and the concern in the doctor’s face and words was obvious. She asked if we had heard of Autism Spectrum Disorder, ordered further tests and leant towards us, explaining we were “probably in that ball park”. For a week after that appointment I couldn’t look at Oscar. Suddenly I couldn’t be with him, didn’t know what to say to him, what to feel. I was scared of my own toddler son.

Because you see she used the word probable and not possible.

I cried. Long and hard. It was so awful and no one could help, no one could say or do anything to help. I was directed to the National Autistic Society website, which was the worst thing I could possibly have done. All I could focus on were the awfully negative stats such as 70% adults with Autism Spectrum Disorders are unemployed and how people with ASD don’t feel things the way other people do. Brilliant. So my boy would never be financially solvent and he didn’t love me. Worst. Week. Ever.

To start with I chose not to tell anyone anything. But carrying something so weighty without talking about it nearly crushed me and after a while it became clear keeping this secret was breaking my heart more than the secret itself. So I told a friend. The relief was palpable and the more people who knew, the less scared I felt. Which makes sense if you consider the power of a secret lies in its keeping. But I still couldn’t share it with my blog. I wanted to, but not all the family knew and I hated the thought of them finding out in such a public way. So what I did write skirted the issue, alluded to his differences, and generally read like someone else’s life.

So over the months we saw various specialists and watched as he started and developed at preschool. We went from being sure, to not so sure, to sure, to totally confused. He ticked some boxes, but not others. I tried not to read too much around the subject and focussed on Oscar.

Then we had his multidisciplinary assessment last week. It was a big meeting, with seven of us in a hot room. No one said anything I didn’t already know or agree with, which was relief. And then it was agreed that while Oscar sits on the borderline for a lot of the markers for ASD (mainly due to his age), the overall feeling was that a diagnosis of Autism Spectrum Disorder would be appropriate.

My world didn’t crumble the way it did the first time round. I think I knew it was coming and actually having this validation will open up doors to support he clearly needs. He’s progressing so well at his preschool with the bit he’s had so far, just think what he could do with more?

And now I’m exhausted. I will write more, but for now that’s me. I’ve just eaten a pastry and bitten my thumb until it bled. I feel like sobbing, but I’ll save that for later as I’m in a coffee shop and it could get messy!

What it will mean I have no idea, so don’t ask. I’m trying to not think beyond the here and now. It’s getting me through the day at the moment. But it does mean he’s who his is. Same as you. Same as your child. He’s unique like we all are. He just has a different way of seeing and finding and making sense of the world.

So thanks Kate. You were right.

@KateLPortman: @mrssavageangel I sometimes find the posts I’m more fearful of writing are the VERY ones I need to write. x