SEN

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.

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.

Its all in the planning

24/03/2015 by MrsSavageAngel Leave a Comment

I can’t believe the end of March is fast rolling round. I’m finally starting to get everything in place for Oscar’s birthday, which is lucky, as its on 2nd April. It might not have been, had the induction worked when it started three days earlier, and I still swear he hung on in there for fear of being born an April Fool, but there you go.

His actual birthday is on the Thursday and Ben has taken the day off work. We like to do something just the three of us on his birthday, only I was struggling to think what to do this year. His birthday falls in the first week of the Easter hols and I knew everywhere, even those places he would enjoy and could probably cope with, would be heaving. So we’re taking a leap and going on our first outing to a SEN play facility, the Thames Valley Adventure Playground. I read about it on someone else’s blog and even though it’s an hour away, I knew immediately that I wanted to take him. I’ll write more about our visit when we’ve been, but I’m super excited for him and it’s an adventure for us as a newly diagnosed SEN family. Fingers crossed!

We booked his party for the following Saturday a while ago now and while he doesn’t really understand what’s going to happen yet, we are so excited that we have the exclusive use of our local soft play cafe The Hen House in Haslemere. My plan is to move as many tables and chairs to the side as possible, giving the children as much floor space to charge around in as I can. Other than that, the wonderful team at The Hen House have the entertainment, the food and the drink covered. Which has kind of left me to enjoy planning the little details. Such as what he’s going to wear. As it’s a soft play party there’s little point him getting dressed up too smartly on the day. However I have bought him this Boden t-shirt, a nod to the farm animal theme. I love it.

Other than that, the guests have been invited and most but not all can make it. But then that’s what happens when you book a party both on Easter weekend AND on the day of another boy’s birthday! I completely forgot about it being Rudy’s birthday until the moment I went to tell his mum about the party. Honestly, how could I forget? We were in beds opposite each other in the hospital! Ahh well it was going to happen sooner or later I guess and hopefully we’ll get to celebrate with them another day.

The invites themselves were something of a mission. Once I decided on a farm theme, I saw some beautiful barn invites on Pinterest and was convinced, for weeks, that I was going to make some just like it. Make. Including cutting stuff out and sticking stuff on. It was a lovely thought and all that but seriously? I barely have the time to blow my nose most days! So not wanting to be defeated entirely, I ordered some personalised printables from Etsy (several invitees told me how much they loved them and I think I could have passed them off as my own creation, but I just cant lie that well!) I also bought card to print them out on, wanting ever so much to have physical printed invites. What a palaver! The card wouldn’t go through the printer and when it did the colour wasn’t as I’d hoped. In the end I emailed the invite round and do you know what? I have no idea why I didn’t just do that in the first place. Physical invites are great for a child to take into school and hand out, but really, when it’s going straight the parent, email invites are the way ahead.

As the party’s taking place in the highly decorated Hen House, decorations weren’t really the necessity they might be if I’d been hosting at home. However, in keeping with the theme, and because I have yet to find a child who doesn’t adore them, I have ordered helium filled balloons, in a black and white cow print. My plan is to have them float around the place with strings long enough to reach up and grab. At the end of the party there’ll be a balloon for every child, and hopefully a few for Oscar to take home too!

Then there’s the party bags. I’ve had a bit of a downer on party bags in the past, primarily because they always seem to be filled with sugar and plastic. Now I’m not saying the boy doesn’t love sugar and plastic, but I wanted to see if I couldn’t pull together a favour bag that carried on the theme, but also had fun and interest for the children. I think I’m getting there, having managed to source plain brown paper lunch style bags from pipii.co.uk. Everything going in it has a nod to the farming and farm theme. There is some sugar, but also some fun and I hope some interest. I just need to figure out if I’m going to decorate the bags somehow. I want to. I really want to! But chances are I won’t and I’ll call it minimalist instead. Ahh well!

Which just about covers everything a three year old could want for their birthday.

What?

A present?

Ahh jeez!