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.

 

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A picture’s worth a thousand words

So last week we bought a printer. You may have seen I wrote about how much Oscar was loving the box? We bought it for several reasons, one being to support Oscar’s speech development, which as I’ve explained before is delayed. One of his issues is not only does it take him a long time to ‘get’ words, he seems to use them and then ‘lose’ them again. So in order to provide a visual support to the words he discovers, we decided to print images out and have them accessible to him at all times. Which is how Ben and I found ourselves hard at work with Google images and the laminator last night.

image

What do you think? We also have cards for Key, Cheese and Apple.

I decided to use a couple of pictures for each word, choosing a selection of drawings, illustrations and photos. I have no idea if this is the ‘right’ thing to do, but I wanted to see if he could identify each picture as the word, regardless of how they appeared. I’ve also added the actual word, not that he can read yet, but just to get him used to associating the letters with the item as he gets older. Again I have no idea if this is the ‘right’ thing to do, but it felt right to me and as such I went with it!

We put them up all around the lounge and kitchen last night and you should have seen his face this morning. It was like Christmas had come early. He ran from one picture to the next, saying the correct word in front of each. The joy was palpable, his and mine! His favourite seems to be “Fish”. We also made some animal cards, as although he hasn’t got the names down just yet, he is making the correct noises each time for Dog, Cat and Sheep.

image

Mmmmmeeeeeehhhhh

image

Meeeeeow

We’ll see if this helps the words to hang around any longer and I know there are words I’ve forgotten he can say like flower and elephant, so I’ll be adding to the collection tonight as well as when he gains new words. Putting the ‘Car’ images next to the front door also gave me the idea to have a go at more directive cards, such as bed, bath, garden, food, drink that sort of thing. Not only will it encourage him to link the word with the image, but hopefully we can both use it to indicate what we want to happen (I’ll let you know how that goes!).

For now he’s happy to run up to the Fish and shout something that sounds to me like “It’s a Fish”!

And that makes me happy.

 

 

 

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 😉

 

 

Speak up…..

As you probably know, my boy has just turned 2. He’s strong and active and bright and gorgeous.

And he is yet to speak.

Now before you rush off to tell me that you know someone who didn’t speak til they were three or it’s because he’s a boy or because he’s so active he doesn’t have time to talk, I’ve heard it. Thank you. Really. But I have.

I can break it down into two reasons why this lack of speech is bothering me.

The first, and probably the most difficult, is that his lack of speech is eminently frustrating. For both of us. When he was a baby and couldn’t make himself understood he just cried. That was a bummer, but I could try a number of things and usually got to the solution eventually. Also his needs were much less complex. He wanted ‘food’. He didn’t want pirate biscuits, not breadsticks, in a red bowl not a plate, in the garden not the lounge. He now knows exactly what he wants and he can’t tell me. I can have a guess, based on time of day, where we are, simple hand gestures (he doesn’t really point, more throws his arm in the general direction and opens and closes his little fist) but chances are I’m not going to quite get it. Which can lead to anything from a “Uh” and a pushed away item to a full on screaming tantrum. This sucks for both of us.

The second is much more selfish. He never calls me. About a year ago, he would, if he was very ill, call Maaaamaaaa in a crying whingey tone. That was fine. Now I don’t even get that. For a short spell if I asked him to say Mama (at about 18 months) he would. But he never called me. He calls for me, with various noises none of which are words. But he never calls me Mama. Or Mummy or Mum or even a specific sounds reserved only for me. And he wont repeat the word, or any word, now either. And that sucks for me. It doesn’t bother him. Maybe it’s because I’m usually the one who answers his calls regardless. Maybe he doesn’t feel the need to give me a name cos I’ll come whatever he shouts. But it’s starting to make me just a little bit sad.

So here’s the deal. I know he’s only just two. I know some children speak later than others. I know he’s a boy. I know he’s super active. I know he’ll get there. I know! I know all these things rationally. My rational head is telling me them all the time. But it doesn’t help the emotional side of me. Does it ever? The rational side had him up the doctors last week. I thought it best to rule out any rational reasons early on, you know, like maybe there’s a physical reason he’s behind with his speech? I went to get him checked for the toddler condition Glue Ear, a build up of fluid in the ear which makes everything sound like you’ve got your fingers in your ears. It’s very common and extremely treatable. Well the poor doctor was treated to a view of Oscar’s evil twin when he tried to look in his ears! Yowsa! And despite all that, he said he couldn’t see. We’ve been given olive oil drops to clear any build up of wax and told to come back in a week or so. As you can imagine, that’s proving a riot every evening 😉 and we still don’t have an answer on this front.

The other thing that’s got me in a flap I rationally know I don’t need to be in, is that now he’s two, he’s due his Two Year development check. I stopped going to the health visitor weigh ins when he was 10 months old (apart from one time a few months ago when I went with a friend to give her support. Those poor, glassy eyed new mothers, burnt out from lack of sleep staring in horror at my great big galumphing son! “You poor dears” I felt like saying “yes you too will have a terror like this one day Mwahahahaha!”) and I haven’t really thought about it since. But my friends are starting to have them and they’ve also told me snippets of where the children are expected to be by now. Physically I think we’re pretty much bang on track. 50th centile I’d say. It’s the talking and the gesturing I’ve got myself in a tizzy over. He “should have” 20-50 words or so by now and be making sentences. At a push he can say “car” (I even got it on film the other day in case he wont perform on the day and I have to prove it!) and “bye” or “bah” as he says it. So yeah I’m worried what they’ll say. We’ve got his check booked for next Tuesday, at home, alone. These checks are normally held in groups, but I’ve asked for a home visit as I know I’m going to want to chew this development question over and I’m not comfortable doing this with strangers. Well obviously I am here, just not face to face! So we’ll see how that goes.

And this is where we find ourselves. In a sort of limbo. Trying not to think about it too much, til something is confirmed. Or not. Glad that we’ve got the ball rolling, but with no idea where it’ll roll to. If anywhere.

Ben asked me the other day, what, about this whole thing I was most worried about. What was I actually worried the health professionals would say. I didn’t have to think.

Because deep down I’m most worried that it’s my fault. That it’s something I’ve done. Or not done.

Because I’m his mama – whether he calls me it or not. And that’s what mamas do.

If you call it a car, that's good enough for me baby

If you call it a car baby, that’s good enough for me!