Autism

Why we love our Children’s Centre

29/07/2015 by MrsSavageAngel Leave a Comment

I don’t know if you have a Children’s or Sure Start centre near you. They’re a government funded early years support hub and we love ours. The Tennyson Centre in Haslemere is an amazing resource. We first found them when Oscar was about 5 months old. They were running a ‘new mother and baby’ group called Welcome to the World. It was billed as an important first social experience for babies, with singing and stories and sensory experiences. And it was. But really it was about encouraging new mothers out of the house. We/I loved it. While many of my new NCT friends went along for one or two sessions, Oscar and I went to all of them. I needed so badly to get out of the house at the time that it quickly became part of our new ‘routine’. We even carried on into the next course, ‘Journey of Discovery’ when Oscar turned 9 months. We went to the Centre every week for months, until he got old enough and I got confident enough to start going to other toddler groups. And I’m sure that’s exactly what they were there for.

I hadn’t been back since Oscar was a tot, until last September, when we were directed back by the health visitor to attend their Chatterbox course for delayed speakers. It was lovely going back and the staff were just as wonderful as they’d ever been, welcoming us back with open arms. It quickly became apparently that while Chatterbox was a fab space for some children, it wasn’t really working for Oscar. The outreach worker Kate suggested we come in late and stay a little longer and that worked much better. When the course came to an end, Kate told us, they were starting a stay and play session for children who had additional needs. Because we were going through the investigations into Oscar’s possible autism diagnosis, we were asked if we’d like to come along. It was a difficult few months for me and Oscar, but the support we received at our weekly visits to our Children’s Centre was invaluable. It was the only agency I came into contact who asked how I was doing. It was worth walking the two miles to the centre just for that. The fact that Oscar adores it there is something of a bonus 😉

So with the arrival of summer I have to admit I was (am) nervous. He’s off preschool now until September. What do you do with an autistic 3 year old, when you don’t drive? The wonderful ladies at The Tennyson Centre have a jam packed summer programme, many of which I know will prove very popular. And busy. That being that case, and to ensure as many children can access the services as possible, they’re carrying on their additional needs stay and play sessions. I’m so happy. He loves it. I love it. That they’re running the sessions, would have been enough for me.

Last Thursday they started off their summer programme with a visit from the hands on farm company Millers Ark. They’ve had them visit previously and knew how ~~hectic~~ popular it could be. So this year arranged for the farm to stay on after the main morning session, and invited children with additional needs, or those who just may need a quieter session to attend. I had no idea how Oscar would react to the animals, but booked to go anyway.

"pig sleep, shhhh, zzzzzz" — “pig sleep, shhhh, zzzzzz”

He ran around the garden, looking at everything, and then went back inside to play with some toys, which I thought might be the case

What I didn’t expect was him to come back out and get right up close to the animals.

We were allowed in with the animals. He’s trying to feed the guinea pigs

Having an in depth conversation with Buster the sheep

Then he went and picked up the brush, saying ‘brush’

He amazed me! He coped brilliantly with the animals and was so lovely with the other children there. We were the last to leave and he still didn’t want to go when we did. Would he have had such a great time in the main session? I’m not convinced he would. I think he would have run and run around the space, then gravitated towards to quieter areas, such as indoors. I’m pretty sure we wouldn’t have got as much out of it and we would have missed the experience of him initiating the grooming of the donkey.

We’d like to say a massive thank you to the team at The Tennyson Centre for arranging such a super experience. And if you’re in Haslemere and have, or know someone in the area with, a preschooler with additional needs I highly recommend Tuesday’s stay and play. You can find details of the centre on the website.

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.

The Boy Makes… Gluten Free Peanut Butter and Banana Cookies

02/07/2015 by MrsSavageAngel Leave a Comment

The hottest day of the year yesterday and today? Pah. Gloomy, murky, rainy! What the dickens is going on? It’s July for goodness sake. Well there really was little else for it we needed to bake today and something comforting on this warm/cold/murky/grey July day. Happy British Summertime.

Like many of our forays into the kitchen I looked in the cupboards, saw what we had, and googled the ingredients for inspiration. That’s when I found this recipe over at the awesomely name Yammie’s Noshery. The beautiful photos won me over and I just had to give them a go.

So I got the bowls out, called Oscar over and told him to get get a chair to stand on. And he did! Lets just take a moment there to marvel at that fact. Ahhhhhh. Right, so anyway the cookies, yes?

Peanut Butter and Banana Cookies

These were great to make with the boy as unlike recent attempts in the kitchen they required no melting or hob work. Perfect for little hands who just love to dump stuff in a bowl and mix.

Ingredients

The original has these in cups, but I’ve converted to grams, cos I’m super nice like that. I’ve also made a few tweaks, including using gluten free flour as usual. Should you prefer standard flour then just omit the Xanthan Gum

130g peanut butter (I used crunchy which I think works amazingly, but smooth would be good too, particularly if these are for small children)
50g softened unsalted butter
220g soft brown sugar
2 teaspoons vanilla extract
1 large ripe banana
200g gluten free plain flour
1/4 teaspoon Xanthan Gum
1/2 teaspoon baking powder
1/2 teaspoon salt
Granulated sugar for rolling (I used caster, but any kind would be good)

Apologies for the lack of photos of the boy helping me. I promise you he did, but I’d left my phone in the other room and you know how they are once they start something!

Method

Preheat the oven to 180c or Gas Mark 5.
Mix the peanut butter, butter and sugar together.
Mash the banana. Add to the butter mix along with the vanilla extract and stir well.
Add the dry ingredients and mix until combined into an easy to work dough.
Take walnut size pieces and roll into balls. Roll each ball in the granulated sugar and place on a baking sheet covered in baking parchment.
Press lightly with the prongs of a fork to make the chequered pattern. The cookies will spread, so don’t put too many on a tray or too close together. I used two baking sheets to make 19 cookies.
Bake for around 10-15 minutes or until golden.
Leave to cool on cooling racks before snaffling greedily behind the kitchen door so the children don’t see you.

Press lightly with the back of a fork this way and that to get the criss cross pattern. — Press lightly in to the uncooked dough with the back of a fork this way and that to get the criss cross pattern.

I am totally going to have to make these again (not that the waistband on my jeans wants me too – they’re so good). The boy loved mixing the ingredients and the mixture is so tactile. Rather like very soft play dough. And so quick. From ingredient to grateful munching in around 20 minutes. I can see them being really good with added cinnamon and rolled in demerara sugar closer to Christmas.

So next time you have a friends coming over and there’s a gluten free eater among them, whip up a batch of these. Everyone will be grateful you did.

Delicious Gluten Free Peanut Butter and Banana cookies. Great with a coffee!

As long it it’s healthy?

21/06/2015 by MrsSavageAngel Leave a Comment

Hands up any of you who, when pregnant were asked “what are you hoping for, boy or girl?”. It’s a pretty regular question and one I know I was asked myself. I mean it’s also a pretty rubbish question. If anyone asked Ben while I was pregnant, what he was hoping for, he’d always say ‘errr.. a baby’. But in reality, no matter how daft, it’s probably a question we’ve asked expectant mothers ourselves.

So, hands up who answered “I don’t care”? And keep your hand up if you added the caveat, “as long as it’s healthy”? Quite a few of you I see.

I didn’t. Well not quite. I knew, knew, knew I wanted a boy. I was actually quite petrified at the thought of having a girl. Girls are so, well, difficult. Boys, much simpler. And I wasn’t shy about telling the truth. When I found out, quite late on, we were indeed having a boy, I couldn’t have been any happier. But for all my honesty, I know I also used the caveat “as long as they’re healthy”.

What a stupid thing to say.

Was I really saying I wouldn’t love my child if they weren’t healthy? And what did I mean by healthy anyway? It’s such an broad sweeping and vague term. Did I in fact mean, “as long as they’re normal”. I’m horrified to think back to the ignorant me and wonder whether this is the case, but I think it is. I want to scream at her and say don’t be so bloody arrogant and oh by the way, you should know this right now THERE IS NO NORMAL.

So yeah, I got what I asked for. I wanted a boy. I got a boy. And boys are not simple. They are just as complex and difficult and hard work as girls. And I wanted him to be ‘healthy’ and physically he is. I mean he really is. He’s never had antibiotics in his life, not because I don’t agree with them, just he’s never needed them. He gets the occasional cold and has had D&V maybe two or three times in his life. Physically my little dude is an ox. But ‘normal’?

Oscar’s autism is classed as a disability. I have a disabled son. This is not what I hoped for. This is not what I wanted all those years ago when I was flippantly remarking on the life of a child yet to be born. No, I think it’s fair to say, I am not in a place yet where I can see his autism as a gift or a positive in our lives. I also think it’s safe to say if I was asked if I wanted to give his autism back, I would. It’s hard. Some days too hard to explain. But if someone could have told me, when he was born, that this is who he is, would I have done anything differently? Would I have loved him any less, despite him not being the paragon of “normal child” I had held in my head for the previous nine months (and, let’s be honest, beyond)?

I didn’t want this for my son. I didn’t want autism to ever be a part of my life. But it is. And I love him no more or less than I would have done with or without it. To say you don’t care what you have as long as it’s healthy implies you will only love a child if it meets your expectations. I’m pretty sure that that’s bull shit. I’m pretty sure you’d love you child regardless. Maybe I’m wrong. Maybe that’s just me. But maybe we need to stop using such thoughtless phrases, from some kind of maternity script. Maybe we could just change the lines a little.

Q: What are you hoping to have, boy or girl?

A: My baby

Maybe

10/06/2015 by MrsSavageAngel Leave a Comment

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.