Maybe

Sorry it’s been quiet of late. Truth is life’s fair taking it out of me. The harder things get the harder it is to see the light, the positive, the things that keep you going. The temptation is there to focus on the difficult things, the stuff that makes you sad or, in my case, to feel yourself coming to something of a grinding standstill. Not happy, not sad, just suspended.

We do our stuff every day. Sometimes that means a heart wrenching nursery drop off, sometimes a fraught trip into town, other times it’ll mean staying home because today it’s just easier that way. I don’t know if it’s his unpredictability that ruins me the most. The energy he takes from me he can have. He always has.

So I sit down and think, I know, I’ll blog about this, get it out there, read it through. So I write some stuff and then I stop. Partly cos I’m not sure how to say it, partly because I don’t know what to say and partly because I don’t want people to read it. It sounds so utterly boring that I cant imagine anyone would want to read it. Or it sounds so very self indulgent, so ‘woe is me’ that I can’t stand myself. So I leave the few lines I’ve written in drafts, then worry because I haven’t written anything for a while.

I wonder if it’s his DLA form that’s causing such a blockage? It sits there on my desktop, half done. Every time I do a bit more I feel like I’m betraying him, talking only about the bad stuff. There’s no question that says “And what did the child do today that made you insanely happy?” or “How often does he ask you to jump on the trampoline with him?” It drains your soul. Is that what I have to give, in return for an allowance that enables him to live a life parallel to his peers?

Maybe once it’s finished and sent off I can stop feeling like I’ve forgotten to do something. Like I feel like I can’t move forward, stuck in this treacle of bureaucracy. But that’s asking a lot of one little form (it’s not little, it’s bloody huge!) Maybe it’s not that.

Maybe I’ll feel the weight lift when I work out how to get his hair cut. So he can watch TV without having to tilt his head back, his fringe is so thick.

Maybe it’ll be when I start losing weight again and stop feeling awful every time I look in the mirror.

Maybe it’ll be when I start getting some proper time to myself (two hours twice a week really isn’t cutting the mustard) and maybe it’ll be when his nursery sorts out his plan for next year.

Maybe it’ll be when he starts his speech therapy and maybe it’ll be when he calls me mama.

Something’s pulling me down.

I’ve got a feeling it’s called life.

 

 

 

 

 

 

6 weeks on – our ASD journey

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.

My playful...

My playful…

...curious...

…curious…

...happy...

…happy…

...handsome boy.

…handsome little boy.

 

Share the Joy linky at bodfortea.co.uk

School Time!!

So it may have been the start of a new term for many of you last week. A familiar round of new shoes and getting used to leaving the house on time again. However for us it was the start of our first ever term. Oscar started preschool on Monday. You might have read about how nervous I was here.

At our meeting with the school last year, we agreed that due to Oscar’s pronounced speech delay and communication difficulties, that we would phase his start more gradually than is usual. This saw me stay at the nursery with him on both Monday and Friday and only stay for an hour or so, rather than just dropping him off for the full three hours. Today I’m leaving him for the first time. Only 45 minutes but it’s a start.

The school are very routine driven, which I think he will appreciate. In just two sessions I’ve been amazed at how quickly he’s picking things up. On the first morning the head came to the door to welcome him in. He ran straight past her into the main classroom. His teacher, the lovely Miss Becca (they’re all called Miss whatever, I think it’s so cute!) gently directed him back to the hall and took him into the cloakroom to hang up his coat. He wasn’t overly keen to go but he did. However, on his second session on Friday, he turned left instead of right at the door, and headed straight for the cloakroom. It’s such a little thing but due to the lack of speech I often find it difficult to gauge how much he’s actually understanding, so this cheered me greatly.

So far he’s shown no sign of distress whatsoever! He likes to explore the various areas and has taken a particular interest in the nature table. But really his heart so far belongs to the play garden. Even in this cold January weather he’s been happily discovering the sand box, the windmills and the large box of toy cars. On his first day I watched him play alongside another little boy, completely harmoniously, while emptying the car box one vehicle at a time. This little guy then started murmuring half words and Oscar copied him. Pitch, tone, sound, the lot. It was like watching a pair of Furbies singing to each other! It might not sound that unusual, but I have seriously never heard him imitate another child like that. It blew me away (I also saw him place something on a table when asked, something he’ll never do for me!)

I guess in that respect a phased start was as good for me as it was for him. It’s shown me his capability, in so many ways. I think a couple of bad incidences, in very specific situations (someone grabbing and shouting at your child anyone?), clouded my view of Oscar and his behaviour in public. Yes those things happened, but I shouldn’t let them define how I view every situation.

Time to let it go and to move on.

Time for (pre) school!

Ready for his first day

Ready for his first day

It wears him out - so I love it!

It wears him out – so I love it!

The Twos

The terrible twos. They really are terrible. In fact, I’d go as far as to say they suck. Big time. Not just for me, but for him too. We had something of an epic fail in the past week, one behavioural disaster after another. Some weeks are just like that I guess. It started with a return to toddler group after the summer break. Hammer is big, it’s noisy and it’s busier than a branch of Next on the first day of the sale. It’s full on, always has been. In the past he’s been OK with it, sometimes good, sometimes not so good. Last week was not a good week. Then there was a failed trip to the Hen House. Meh, it happens I guess. It’s this ‘pushing’ phase that’s doing my nut. I know it’s his way (whether right or wrong) of expressing himself (“you’re in my space/touching my stuff/touching stuff I deem to be mine because I glanced at it 20 minutes ago and I don’t like it”). It’s not malicious. But other people don’t see that. They just glare and in some cases admonish me for his behaviour. His speech delayed, frustrated, two year old behaviour. Sigh.

So what do I do? Seriously? Much of the advice given by official channels is to ignore bad behaviour (er not always possible, especially in public when it’s involving other children) and getting them to talk through their feelings (hmmm can we park that one for now?), in fact much of the advice just seems to be ‘well yeah, this is going to happen and you gotta ride it out best you can honey, sorry. We’ll talk again when he’s three, OK?’. My initial reaction on Friday was to never take him out again. Ever. Again. We’ll just stay in I thought. He wont meet other children, but that way he can’t push them (his modus operadi) and no one will look at me like I’ve pissed in the punch!

I’m not serious of course. What would that teach him? Nada, nothing, zip! I know that really. Just some days, I feel like I’m walking a tightrope. Blindfold. With my hands tied behind my back. Whilst reciting Chaucer (I really hated Chaucer at A’level). Sometimes I’m just so tired to my bones with all this worry and indecision and feeling just not quite good enough, that the path of least resistance just starts to look mighty appealing.

Yeah, the last week was not a good week.

But then, actually, wasn’t it? Thursday, Friday and Saturday could have been better. Sure. Things could have gone more the way I wanted them to, but ya’ know, no one died. And Sunday’s trip to Alice Holt and Tuesday’s trip to The Hen House, whilst embarked upon with gritted teeth, worked out amazingly well. No pushing, minimal squealing, making friends and laughing like a loon (him not me. Well a bit me 😉 )

IMG_5056

Taking turns

IMG_5028

Swinging happy

And then there’s the speech. The delay in Oscar’s speech is, I feel, impacting greatly on his behaviour, but guess what? Those pesky little words are starting to emerge. Slowly, and in a really peculiar order, but in the last week my boy suddenly has something of a vocabulary. It’s a mixtures of single words like ‘ready’, ‘water’, ‘more’ and ‘flower’ and then even some short phrases like ‘another one’ and ‘I don’t want to’! Whether they ‘stick’ and he continues to use them regularly is yet to be seen (apologies for my cautious tone, but we’ve been here before. Said bear four times in one day, never said it again) but in a week when everything was dreadful, actually it wasn’t at all. He even has a name for me now! I’m Nuhnuh. Just when you think it couldn’t be worse, it suddenly isn’t. That’s the twos for you.

The terrible, terrifying, wonderful twos.

Diary of an Imperfect Mum

Running up that hill….

Mrssavageangel’s been a bit quiet of late (unless you’re over with us on Facebook, then you’d know she never shuts the hell up!) It’s not that I don’t have 100 things I want to talk about, it’s just knowing how to, or when to, or even, well just, too.

Things are all a bit crazy over at Casa Del Savage at the mo. We’ve completely emptied our bedroom, so it can be gutted and redone (which I tell you is harder than moving, particularly when you have little space to move everything into!). It’ll be lovely when it’s done, but boy is the process painful. For me anyway. Moving all the furniture set my gallbladder off again. Thankfully it seems to have gone back to sleep again now, but it’s made me painfully (pun intended!) aware that I wont be able to put off having the bugger removed forever. I will until it’s unbearable though!

The before

The before

Then there’s been some movement on Oscar’s speech. While he does has a handful of words, it really is too few to be particularly useful to him in everyday life (Din au or rrrrrr* anyone?) and that’s the reason the HV has referred him to speech and language. We’ve also got a hearing check on 29th August just to be on the safe side. I’m pretty sure he can hear, but I am interested to see if he can hear everything (all frequencies, all sounds etc). I’m not looking forward to the tests. It’s asking a lot of a 2.5 year old to sit still for what he sees as no discernible reason. Ahh well. So anyway yes we’ve been referred for speech therapy, but I’m hearing the wait is really long. Even the HV didn’t seem optimistic as to when we’d get an appointment. Which pretty much sucks. And pretty much means I’m on my own if I want to help him. A couple of friends with an interest in communication have given me some ideas to try surrounding visual aids and another a book on learning through play. But the things that bind all the ideas seem to be simplicity, patience and PERSEVERANCE. Which is why it’s so draining I guess.

His behaviour’s been a little up and down of late, some days beyond tiring, some days angelic. But do you know, the more I look at everything he does, in terms of him attempting to communicate, the more I see. And the more understanding (and patient) I can try to be. I’ve taken to explaining where we’re going and how I expect him to behave at these places before we go out and that’s working wonders. And when he is cross or upset or frustrated I try to talk him through the outrage. I am also learning to see when he really has had enough, usually linked to him being too tired to keep the frustration reigned in. Take yesterday for example. We went the Hen House and he had a whale of a time, playing both alone and with other children. Earlier in the afternoon he was happy to share the roundabout with our friend’s daughter Elsa and watching them giggling together was just awesome. However towards the end of the afternoon, when asked to share the same toy, in exactly the same way with Elsa, he was having none of it. He didn’t get cross just would not let her get on. It was then I knew it was time to leave. So we did and despite small initial protestations, once he was in the buggy nibbling a cheese sarnie he seemed positively grateful.

Taking this approach is making me see him in a whole different light. I was worried what other parents might think or say if they saw me taking this (what some might perceive as) softly softly approach, but actually, do you know what:

1) fuck ’em

and

2) if you have a child that doesn’t needs this kind of eagle eyed understanding and can tell you straight up what’s going on then that’s great. Mine can’t

It’s quite a big thing to admit, to yourself more than anyone, that your child might need something (even slightly) different than the norm. But admitting it and running with, whilst it’s the hardest part, is the best thing you can do.

Pass me those Nikes will you – I’ve got running to do!

Wake up and smell the flowers Mama

Wake up and smell the flowers Mama

 

*Dinosaur Grrrrrr if you didn’t guess 😉