Autistic

We are the Mothers…

11/11/2015 by MrsSavageAngel Leave a Comment

We are the mothers who’s babies seemed perfect at birth.

We are the mothers whose babies always cried. Or didn’t cry at all.

We are the mothers who felt our tiny ones pull away rather than nuzzle in.

We are the mothers who came to expect little eye contact and worked so hard for every smile.

We are the mothers who watched. And waited.

We are the mothers who swallowed our fear and guilt and told a professional we had concerns.

We are the mothers who have had our lips cut, our eyes split, our cheeks bruised, our hearts broken by violent melt downs.

We are the mothers that keep a tally of information and a raft of professionals names on the tips of our tongues.

We are the mothers who’s children have not slept. And those who do are kept awake reading articles and researching and writing documents and filling out forms. And worrying.

We are the mothers who work so hard for every good experience their child has, wherever it might be. However small it may seem.

And yet

We are the mothers who are stared at, tutted at, passed judgement on.

We are the mothers who are treated badly at the school gates. Or within them.

We are the mothers who’s children, the ones we work so hard for, are not appreciated. Or included. Because they are not ‘good’.

We are the mothers of autistic children.

We’re dealing with more than you could ever believe.

Just to be the mothers we never imagined.

Potty training and what I’ve learnt this week

20/08/2015 by MrsSavageAngel Leave a Comment

Last Sunday, I changed Oscar’s nappy around 2pm. And that was that. He decided then and there, that he was starting potty training. No warning, no asking. He just refused to put a nappy back on and then decided the rest of his clothes were coming off too. He’s never done that before, which told me he was serious. My boy has always had a way of communicating without words and on Sunday he told me in no uncertain terms he was ready to try a life without nappies.

Don’t get me wrong, we’ve had tentative attempts before, which have usually resulted in wee all over the carpet and he’s been able to occasionally stand and pee over the potty for a while now. But this Sunday, he just sat himself down and did what he needed to do. We were slightly blown away to be honest. Monday was similar, he increased in confidence and as long as he could see the potty, he would use it, whether I was there or not. Now he doesnt even need to see it, he just needs to know where it is. Oh and have no pants on. But we’re working on that!

So you might ask why did we wait so long to start? Oscar is 3 years and 4 months, which by potty training standards is pretty old. For a child on the standard developmental trajectory. But if you read me regularly you’ll know Oscar’s development is on an Autistic trajectory. He’s doing it all, just in his own time. And much as everything else in his life, he was always going to do it when he was ready and not before. But also I was afraid. His lack of speech and his inability to tell me when he needed to go always put me off trying.

I also think I was lucky. No one ever said I ‘should’ be potty training him by now. Lots of people I’ve spoken to have had hugely unsupportive friends and family when it comes to potty training, getting pressure to start before they feel ready from all sides. Not me. My sister in law said to be me when Oscar turned two, “don’t ever start before you’re ready, it wont work and it’ll set you both back”. And I guess we heeded that advice. If you’re feeling pressured by anyone, well that sucks. Smile at those people, then roundly ignore them. You and your child will know when the time is right.

Anyway this is what I’ve learnt about potty training Oscar this week. I’d like to say this is what I’ve learnt about potty training or what I’ve learnt about potty training an autistic toddler, but really, as with anything, my experience is just that; mine:

I think the reason Oscar came to the conclusion to start potty training when he did, might have had something to do with the nappies he was wearing. From his earliest days he’s been in Pampers Baby Dry, day and night. They worked for us, we never had any leakages and so we just stuck with what we knew. Trouble was they were so absorbent that they remained too comfy for too long. A few months ago we switched from nappies to pull ups and from Pampers Baby Dry to Carrefour, a cheap, French brand we got from Ocado. They worked well during the day, but filled up quicker, and were definitely not as comfortable. Which was good. It meant Oscar was much more aware of what was going on down there. It wasn’t until he started wearing these that he started to tell me when he’d done a poo. Basically if they’re too comfy why are they ever going to want to change?

So far being at home and with no trousers or pants on has worked best. Having something on his bottom half seems to confuse him. Had I had any say in when we started I probably would have chosen a week when we had no outings (rather than a week with several planned trips out). If you can stay in, with a semi naked baby for a week, I would.

You get totally fit running up and down the stairs to empty that bad boy. Unless you have a down stairs toilet that is. And lucky you if you do!

Bribery is all well and good if your child is open to a little ‘encouragement’ in the form of their favourite sweets or a reward chart or whatever, but mine is inscrutable. I knew he was, so why I bought some Pez sweets hoping to meter them out every time he did a wee, I’ll never know. He just took the dispenser off me and choffed the lot. Ahh well.

Everyone who’s been through it, has done potty training differently. Even within the same family. There is no ‘one way’ to do it, but it’s like anything to do with parenting; take all the advice and try what works for you.

If you’ve got a boy he is never going to stop playing with his penis, willie, thing, whatever you guys call it, as long as he lives. And potty training is when they’ll start their love affair with their manhood, especially if you do the semi naked for a week thing. Deal with it. That, my friends, is never going to change, no matter how much you asked them to leave it alone. I know. Because grown men have told me. And who am I to argue?

If you , like me have a boy stock up on the following: little boy briefs (or other desired pants) , jogging bottoms, shorts or other pull up trousers and washing powder. You’re going to be running that washing machine every day my friend (like you don’t already *sigh*). If you have a girl you probably need slightly different clothing, but I doubt you’ll be running the machine any less.

If you don’t have a downstairs loo (see item 2), you might want to invest in two potties. I got super sick of making sure the potty where he was, so invested in a second potty to keep upstairs.

We have yet to move onto actually getting him to use the actual loo yet (although he does love emptying the number 2s down the loo and flushing it away, which is a start I guess). We have a bathroom step and plan to invest in a double toilet seat. As his bum is so tiny I figure it’ll be useful for quite some time and the removable seats I’ve tried in the past have been too wobbly. As he dislikes me helping him in anyway, something I can feel confident in him using alone is probably not a bad thing.

Oscar doesn’t respond particularly well to being asked over and over if he needs the loo. He just knows when he does and asking him all the time resulted in nothing but a tried mummy.If your child isn’t particularly verbal you’re going to have to watch for other signs and if you can use some kind of PECS or symbol exchange more power to you.

Potty training any child can be difficult and stressful. Potty a child on the spectrum can come with it’s own challenges. Sensorially it can be a very unnerving experience and it changes a massive part of the routine a child may rely on. But really, you can’t do anything they aren’t prepared to do. Listen to them, encourage them in any way you seem fit, but take your time. And buy wine. Not for any stains. For you.

image (6) — And if they want to eat dinner while sitting on the potty, who are you to argue? NB He wasn’t actually using the potty here, that’d be gross!

The choice is mine, apparently…

16/07/2015 by MrsSavageAngel Leave a Comment

Blackboardwithchalktray

I went to look at a primary school yesterday. The first one I’ve been in, since I was a pupil of one! Oscar’s needs, moving forward are obviously going to be a bit different from your standard pupil (not that I actually believe there is such thing!). But either way, I need to look at school options and I need to start doing it now (or depending on who you speak to I should have been doing it ‘ages‘ ago). Anyway, in order to abate some of the panic that was rising, I made an appointment to go and see a school. Just to have a look. Just to start the process.

You see when I was a child you went to the nearest school. You didn’t have a choice. In fact I lived in a village and we really didn’t have a choice. You went to Balsall Primary or you went private, but that meant serious travelling. And no one really questioned that. The school was good. Hell I thought it was great, but the decision to go there was not really a decision at all. It just was. However today, even in a small town like Haslemere, there is a serious amount of choice, of both state and private schools. Add to that the possibility of specialist provision and I suddenly find myself on the end of what feels like an enormous decision. I know all parents today have more choice in primary schools than, for example, my parents did for me but the process of viewing and deliberating and worrying seems to come down to either what you can afford (if you plan to go private) or what you’re offered (if you’re not). Or am I over simplyfying? At the end of the day you can lust after a state school all you like, but if they don’t offer it to you, even after you appeal, you don’t get it. Your choice is taken into consideration, but really that’s all it is. A consideration.

When you have a child with Autism, the system is different. And I mean very different. We’ll park the weight of responsibility I feel to get this decision “right” for a minute and talk about the process. We have just started down the road towards possibly getting Oscar an EHCP or an Educational Health Care Plan, or what used to be called a Statement. This process in itself is mind boggling complicated and takes months and months of preparation, including assessments by Educational Psychologists and the involvement of many other agencies. The back and forth and back and forth again (and if the stories are to be believed, again and again…) should, if all goes well, result in a legally binding document that means as a parent I can send Oscar to ANY school I believe is best for him. It also means that school has to provide the support he is legally entitled to. I’ll have all sorts of advice, from various assessments and agencies, to listen to and the professionals tell you it’s important you heed the advice. But then experienced Autism parents tell you that, really no one knows your child like you do, so trust your instinct when it comes to choosing the school, mainstream or specialist. Panic rising again!

Anyway, back to the school I looked at. It was a mainstream school, out of my catchment area, but one that’s given me huge amounts of hope. Its also made me want to look at other mainstream schools to see if they are all this attuned to SEN needs or if this really is a stand out school. The head also gave me some really useful advice about dealing with the ‘county’ and what I should be doing right now in order to get his ducks in a row for next year. She didn’t sugar coat how difficult the next year might be in terms of bureaucracy, which I was actually incredibly grateful for.

So today, as per her encouragement, I made a raft of chasing calls and I kept a log of who I rang and what was said. I was dismayed to hear that he STILL hasn’t been assigned a speech and language therapist, despite being on the list for over a year and a promise six weeks ago that sessions would start in July, but not surprised. I had a good conversation with his Early Years Advisor and found out that his preschool notification has definitely been issued. That ball is well and truly rolling.

So I’m feeling slightly more focussed now. I need to make appointments to go a see other schools, including some specialist schools. At least we can’t afford private, so that narrows the field a tiny bit. Every cloud! Once I’ve looked around some more schools, I’m hoping it will mean I can listen to all the advice and trust my instinct. The panic has abated.

For now.

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.