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mrssavageangel

First time mother just trying to figure out where to go from here.

Autism Spectrum Disorder

Zippos Circus – our first visit

10/10/2017 by MrsSavageAngel Leave a Comment

We’ve never taken Oscar to see any kind of ‘show’. When your autistic child has a history of struggling to sit and attend to anything, you just avoid things that are likely to demand that of him. No theatre, no cinema, no concerts and no circus.

Our small town is regularly visited by a circus and for the last few years Oscar kept asking to go. The thought of it worried me. The noise, the lights, the atmosphere, the sitting and attending. How would he cope? So I just kept putting him off. It might sound mean but it just didn’t feel like the time was right.

Then a few weeks ago Zippos Circus contacted us and asked if we’d like to attend one of their shows in Guildford. I weighed it up in my mind and decided maybe the time had come. He’s five and a half now. We have to give him the opportunity to experience as much as we can. Making assumptions on his behalf really isn’t fair. It’s up to him to ‘tell’ us whether he can cope.

Preparation

So we prepared as well as we could, showing Oscar plenty of online videos and pictures of Zippos Circus. He was more interested than I thought he’d be and loved the clips of the slapstick action on Instagram.

My only concern was that he seemed convinced there would be “an elephant on a tightrope, that jumps into a bucket” and “tigers”. Yeah, thanks for that Disney! The days of exotic animals in circuses are long gone (in the UK at least). The only animals in Zippos Circus this year were the horses of the Khadikov Cossack Riders and Norman Barrett’s Famous Trained Budgies.  I hoped he wouldn’t be disappointed.

To the Circus
a circus big top
Big Top – photo courtesy of Zippos Circus

The Big Top itself was a sight to behold. Despite confusion over where to park (we parked in the nearby Park and Ride, ignoring the handwritten signs that the car park was NOT for Circus visitors and hoped for the best), the immediate impression was one of excitement. The buzz of the families arriving was palpable. Oscar was given a programme which he studied in detail before we went in. Then we were shown to our seats by a very helpful member of the team. In fact all the staff we came into contact with were courteous and helpful.

small boy reading circus programme
Oscar swotting up before the show.

We sat and waited for the show to begin. With popcorn and without any real expectation. As it happened, this was the first time any of Family Savage had been to a circus. Our biggest concern was obviously how Oscar would cope. We were ready to leave at a moments notice.

He was enthralled in a way I’ve never seen before.

The acts were so diverse. From the fearless Timbuktu Tumbler Acrobatics team,

African acrobats in formation

to the heart thumpingly awesome Los Carmonas Del Sol from Argentina.

Argentinian drummers at the circus

The way the show was structured really worked for us. The energy was so high and the pace so fast, Oscar had no time to feel like he was waiting around. He was fascinated from the start. And add in a little peril, like trapeze artist Kimberly did as she flew over our heads..

…. well he was spellbound!

My personal favourite was the knife throwing act. It had a real vintage feel and to be honest more of what I expected to see at a circus. Give that woman a round of applause.

However Oscar’s absolute favourite was the slapstick comedy act Emilion Delbosq. Zippos make it very clear on their website that this is a circus without “scary clowns”, but Emilion really was that comic element that circuses are known for and Oscar adored him. He talked about him for ages afterwards!

This dude moved around so fast my photos don’t do him justice. Picture courtesy of Zippos Circus
Issues

Our only issue was something we hadn’t planned for at all. The intermission.

After the interval, which Oscar coped with admirably, we had to come and sit back down for more acts. This threw him entirely. He was so confused. And that confusion quickly started turning to anxiety. Ben took him outside for a walk, but when he bought him back in he just couldn’t cope and announced very firmly that he needed to leave. Now.

So of course we did. Ahh well, you live and learn.

It meant we didn’t get to see the whole show, but then at 2 hours I wasn’t convinced we would anyway. It’s a long show for any five year old, let alone one on the spectrum. And I was just so proud he’d made it through as much as he did, I didn’t care that we missed the Globe of Steel motorbike acrobatic team or Alex the Fireman (!). We’d been to the circus and had a great time.

Would we go again?

Yes. Ben and I loved it way more than we thought we would and we’ve both said we’d like to go another time, without Oscar. An evening show without children would be a real night out! Would we take Oscar again. Actually yes. We wouldn’t pay for the fabulous (although rather expensive) ringside seats we had this time, only for him to want to leave half way through. But because he really enjoyed the acts he did see, we’d definitely take him again.

Just we’d make him sit in the cheap seats 😉

 

 

 

We’d like to say a huge Savage Family Thank You to Zippos for inviting us and gifting us our tickets.

As always this review is my own opinion and I have not been paid to write this post.

I would also like to point out that our experience of Autism at the Circus is ours alone and I do not attempt to speak for other children on the spectrum.

Although if you’re an Autism Family you know that already 🙂

 

 

 

Filed Under: Children, Family Tagged With: Autism, autism family, Autism Spectrum Disorder, circus, family days out, zippos circus

Haslemere Fringe Festival and why we’ve never been before

02/07/2016 by MrsSavageAngel Leave a Comment

It’s (allegedly) Summer. ‘Tis the season for fetes, fairs and festivals. What fun! Or rather, what fun? If you have a child who is all to easily over stimulated then the summer events season can be hard work. We’ve had mixed results with summer fairs . When Oscar was younger they always resulted in at least one of us leaving in screaming tears. And over the years that’s made us wary. But I’ve said it before, it’s not up to us to just assume what Oscar can and can’t handle, what he will or won’t enjoy. Regardless of his Autism, he changes all the time and if we don’t keep giving him the opportunity to try things, how will he, or we, ever know what works and what doesn’t? It’s for him to tell us if he likes something or not. Which is why we decided to go to our local summer fair, the Haslemere Fringe Festival (otherwise known as Lion Fest) today.

We’ve never gone along before, for various reasons. Firstly, it’s on a local green which is flanked on two sides by busy roads, which scares the bejaysus out of me. Secondly it’s just so busy, what if he can’t cope? Yep, I think quite a lot of not attending has been to do with my fear of the unknown and, if I’m honest, of my inability to control the situation. And that’s not fair on Oscar. We walked past the festival being set up several times this week and Oscar was most interested. He told me it was ‘a party’ and that he could see ‘ladders’. He also told me he wanted to ‘go to the party’. This year they had fenced the entire operation in, meaning I only needed to fear the unknown element 😉 . And that’s my problem and not his. So today we went.

We nearly had a false start, as after walking down there and him getting very excited to ‘pay the lady’, we realised we didn’t have enough cash. We waited while Ben ran off to get some and while waiting is not Oscar’s strong suit, and he did get a little upset, it did also give him a chance to check the site out from the other side of the fence. By the time we’d paid to get in he knew exactly which ride he wanted to go on first. And so he did.

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He loved this ride and went on it twice. Once in a helicopter and once in a plane.

He then decided the Big Wheel was next, however I could see he needed the loo. He’s getting quite good at giving me signals when he needs to go and today he also announced he needed the ‘bathroom’. As we’d gone sans nappy today, we ran (and he held on) until we reached the other end of the fayre, where he had his first experience of a urinal (with a little help from daddy!). What a guy! When he was done he headed straight back to the Big Wheel, which he announced he wanted to go on with Daddy. And when your child asks like that, you pack away your fear of heights and you do it. Thank you Ben!

Oscar looked so happy the whole time he was on the Big Wheel.
Wave to Mummy! Oscar looked so happy the whole time he was on the Big Wheel.

Then as soon as that was done he headed off to the inflatable slide and then the bouncy castle. What larks!

He he comes!
He he comes! Happy Boy

But my favourite moment of the afternoon has to be when he announced he wanted to go to ‘the farm’. I wasn’t sure when he meant, until I remembered we’d seen a music tent near the loos, with bales of hay for seating. He happily led the way and we were confident enough to let him run ahead without needing to be holding on to him. We sat in the tent and watched the young girl singing. Oscar also told us she was ‘playing a guitar’. Which she was.

I guarantee this is cutest picture you'll see today
I guarantee this is cutest picture you’ll see today
Mummy and daddy enjoying the music too!
Mummy and daddy enjoying the music too!

One of the hardest parts was leaving. We softened the blow by going home in stages, first to the park where he had a great time sliding, swinging and playing on the roundabout with a new friend. Then on the way home we stopped into Dylan’s Ice Cream. I’d won a competition to design a flavour for the festival and my prize was free ice cream. Thank you very much! My winning entry was Lion Bar (for Lion Fest geddit!) flavour, and I tell you it has ruined me for other flavours. Delicious!

Chocolate, Caramel, Wafers and Rice Crispies. Oh. My. Gawd!
Chocolate, Caramel, Wafers and Rice Crispies. Oh. My. Gawd!

Going to Haslemere Fringe Festival was a bit of a spur of the moment decision, not something I do often with Oscar. But today it worked. Yes it was expensive to get in, just to pay for him to go on the few rides and not really enjoy any of the other things on offer such as the live bands or the market stalls. But do you know, he had an unbelievably good time, with waiting and queuing and running but not running off and laughing and big smiles. Oscar won’t necessarily smile when he’s having fun, but I can tell you now, he doesn’t smile if he’s not. And today he did. Loads.

 

Filed Under: Children, Family Tagged With: Autism, Autism Spectrum Disorder, Big Wheel, Dylan's Ice Cream, festival, fun, Haslemere, Haslemere Fringe Festival, Lion Fest, LionFest, summer, Summer Fair, Surrey

The Application – applying for schools from an SEN perspective

18/01/2016 by MrsSavageAngel Leave a Comment

Last Friday was, if you have children starting school in the UK this September, the deadline for getting your school application in. Did you get yours in? I did, just! I applied to three (I could have applied to four but there wasn’t a fourth I particularly wanted) local schools, online, same as everyone else. Only my application wasn’t the same as everyone else’s.

I have written before about schooling for those children with an SEND diagnosis and the weight of responsibility I felt to ‘get it right’. And I still do to some extent. I visited mainstream schools and a specialist unit. I saw what was on offer locally. And not once did I look at an Ofsted report. Call me crazy, but Oscar’s needs are going to be just that little different and what grades he’ll get an English and Maths, at least to begin with, don’t bother me in the slightest. I need a school, that’s going to, minimum, understand him and include him. How good the facilities are, or what grades other pupils are getting really aren’t that interesting to me.

So yeah I visited a bunch of schools. I didn’t get a bad impression from any of them other than the specialist unit. Call it a mothers hunch, but the woman running the unit was so uninterested in the children and more interested in herself that I couldn’t get out of there quick enough. The school is so oversubscribed that she didn’t need to ask me my son’s name or anything about him. She would fill her places whether we chose to go there or not, twenty times over. It just gave rise to an impression of complete ambivalence to the children and that made me want to cry.

Anyway back to the application process. We received a letter to confirm Oscar would be considered for an Educational Health Care Plan (the system that has replaced the old ‘Statement’), back in November and he’s had extra Educational Psychology and Speech and Language reports done to that effect, but we have still yet to hear whether he has one or not yet. It’ll be discussed at a forum some time this month is all I’ve been told. Which is great, but not particularly helpful for the application process, the deadline for which was 15th January. It means I had to apply like all other parents, but then fashion some form of evidence to back up that the ECHP was (possibly) in the pipe line. The reason for needing to do this at all is that having an EHCP would put him in a different place in the admittance list (even though where in the list seems to vary from school to school). As we live in a really weird corner of three counties and various catchment areas, we have applied to two schools we are technically out of catchment for. However, if the county take into account his SEN, this might not matter.

Do you see? I’m living in a world of “ifs” and “buts” right now. But (hahaha see what I did there), what is done is done. The application is in, the evidence written, the EHCP decision in the hands of someone else. So we wait. Same as every parent. And hope we’ve made the right decision, hope we get the place we would like, hope the forum agrees to support him in the way I believe he needs.

Not worry. Hope.

Not to mention the fact that this all means my baby will be starting school in September. School! Arrrggghhhhh!

No let’s not think about that at all. Let’s just go back to focussing on the process. Yes. That’s much less frightening! ?

 

 

 

Filed Under: Autism, Children Tagged With: application, asc, asd, Autism, Autism Spectrum Disorder, Autistic, School, School places, SEND, September, Surrey

Savage Christmas 2015

04/01/2016 by MrsSavageAngel Leave a Comment

It’s January. How can it possibly be January? Already? We spent so long looking forward to the Christmas holiday and just like that it was over. Sad Face. Or rather that should be Happy Face, because our holiday was perfect! It was everything I had imagined and so much more and for that reason I can’t possibly be sad!

I wrote here about our Christmas plans to hire an apartment in our childhood home town of Plymouth. About how we wanted to spend Christmas with our family and friends, but how due to Oscar’s Autism, we all needed our own space. And I was right. All the planning and the organising meant the holiday, because this was so much more than just a Christmas celebration, was totally worth it!

The drive down to Plymouth was OK, with only minimal delays. The boy spent the whole four and half hours watching Thomas the Tank. God bless Apple! When we arrived at the Royal William Yard, the owner of the property was there to meet us. She even helped us carry our luggage up to the 2nd floor apartment, bless her. She showed us around, what turned out to be a much more spacious apartment than I had envisaged. I had spent some time in the weeks leading up our stay showing Oscar pictures of the flat, taken from the website, but you’re never sure how similar a place is going to be to a promotional photo. Well, I was thrilled to see it was identical, even down to the radio channel playing on the television. I could have hugged her just for that, never mind the milk, coffee, flowers and mince pies she’d bought for us! I knew then this was going to be a good holiday!

Taken from the website, the lounge looked exactly like this picture. I was so grateful!
Taken from the website, the lounge looked exactly like this picture. I was so grateful!
My first impression of the place was it is SHAMAZING!
My first impression of the place was ” This is SHAMAZING!”
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The view as we arrived. Breathtaking!

We settled in immediately. Oscar ran from room to room and we moved the few delicate looking objects (a beautiful model of a tall ship and some glass vases) out of the reach of curious hands. That done Ben collected the Christmas shopping, while I unpacked. Poor old hubs had to carry all the shopping from the car to the apartment alone as I had to stay with Oscar, but once it was done he was rewarded with a large beer, a child who settled down to sleep straight away and a feet up relax on the sofa with pizza. You couldn’t do that staying in someone else’s home 😉

Christmas Day itself was fairly quiet. We had present opening in the morning, in our Christmas jammies. Oscar was incredibly lucky again this year. He has such a generous family. And I breathed a sigh of relief to see no one had given him anything that wouldn’t fit in the car on the way home. ‘Tis always a worry 😉 While he played with his Tidmouth Shed playset, I cracked on with the lunch. One of the best things about the apartment was, without a doubt, the kitchen. It was an open plan layout but the kitchen was raised giving the feel of a bar, or in my case a stage! I loved it. It meant Ben could help from the other side of the worktop and not get in my way and I could talk to my mum as I prepared the veg. We drank, ate and generally relaxed all day. The boy wouldn’t sit with us at dinner, which was a shame, but wasn’t something I was going to force and cause a melt down over. Instead I plated him some food, which he moved around the room but didn’t touch. Until later when I heard him say something was ‘mmmm it’s elicious’ and realised he had wolfed the roast potatoes and later on some turkey 🙂 Good lad!

The big FC was tres generous this year!
The big FC was tres generous this year!
My candy cane boy
My candy cane boy opening his presents
Tidmouth Sheds was a hit!
Tidmouth Sheds was a hit!
Facetiming Aunty Laura
Facetiming Aunty Laura
Prosecco for Brekkie!
Prosecco for Brekkie!
The Maple Based Turkey was a hit. And not at all burnt (well a bit singed maybe!)
The Maple Based Turkey was a hit. And not at all burnt (well a bit singed maybe!)
Me in my 'cooking like I'm in a cookery show' element!
Me in my ‘cooking like I’m in a cookery show’ element!
Got to use my Christmas linen for only the second time since it was bought in 2010!
Got to use my Christmas linen for only the second time since it was bought in 2010!

Yeah Christmas day was a hit , but this holiday was so much more. Before we even started our holiday, we had worked out something of a schedule. What we were going to do and who we were going to see everyday, and do you know I’m so glad we did. It meant we knew and could prepare appropriately. It also stopped any dithering, messing about wasting time, trying to decide what to do and potentially missing something important out. It also meant I could prepare Oscar. I have no idea how much the pictures of the people I showed him or the explanations I gave helped, but he coped brilliantly all week and I can only surmise it helped a bit! We visited family, had family visit us, hosted parties, went for meals, went walking in the fog up on Dartmoor and the boy loved it all. He loved playing with his cousins. They are all a similar age, but the older two, Jessica and Lucas, were just amazing with him, including him and listening when I explained why he was or wasn’t doing this or that. Whenever Oscar got frustrated or upset his cousin Lucas would just say, ‘hey Oscar come on lets run’ and off they’d go, sadness forgotten. In fact the only melt down we had all week was after his cousin Lucas had to leave. And even that didn’t last long as he collapsed into bed, jiggered from such an amazing day!

Love this crazy. My oldest niece Jessica
Love this crazy. My oldest niece Jessica
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Partners in crime! Oscar with his cousin Lucas

We just had so much fun this Christmas. And the fact that Oscar coped so brilliantly, only made it all the better for Ben and I. We treated ourselves too this holiday with dinner at River Cottage on Christmas Eve (with babysitting provided by Nanna!) and a night out (for Ben) and in (for me) with our friends we miss terribly and don’t get to see nearly enough of.

River Cottage on Christmas Eve
River Cottage on Christmas Eve
Ben and Lee reliving their youth. Ben behind the 'bar' and Lee propping it up!
Ben and Lee reliving their youth. Ben behind the ‘bar’ and Lee propping it up!

But the best thing about this trip was undoubtedly the apartment. It was stunning and practical. It gave us everything we needed and was in a fantastic location. I knew the idea to hire somewhere was a good one. I just couldn’t have asked for more and none of us wanted to leave. Oscar loved watching the boats from the windows, I loved the kitchen and Ben loved the calm quiet of the place. One of my favourite memories of the place though was the lift. Within a day Oscar had learnt how to press for the lift, get us to the right floor and to hold our hands when we needed him to. Just watching him learning like that was worth staying there for alone.

Watching the boats
Watching the boats
Walking to the lift wearing his backpack for the first time!
Walking to the lift wearing his backpack for the first time!

Would we do it again?

Absolutely!

But do we really need to wait until Christmas??? 😉

 

 

 

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Filed Under: Children, Family, Food Tagged With: #SavageChristmas15, apartment, asc, asd, Autism, Autism Spectrum Disorder, Autistic, boats, Christmas, Family, holiday, holiday lets, plymouth, presents, Rental, Royal William Yard, views

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.

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Filed Under: Autism, Family, Personal Tagged With: asc, asd, Autism, Autism Spectrum Disorder, Autistic Spectrum Disorder, identity, Motherhood, mummy, parent, parenthood, SEN, SEND, True to yourself

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Oscar’s party was a roaring success. The cousins Oscar’s party was a roaring success. The cousins all came and played together like they were best of friends, the Minecraft themed food was devoured, the castle was bounced to within an inch of its life, the grown ups chatted and most of all the boy had the best day! And now I’m so exhausted I’m off to bed. Thank you to the family (and chosen family) who helped make it such a special day for our special little guy. #whenoscarturnedten #happybirthday #familypartiesarethebest
Ten years old. Where has that decade gone? He’s Ten years old. Where has that decade gone? He’s ten years old. I’m ten years older. Sometimes it feels like we’re growing up together! Happy birthday beautiful boy. And Happy Birthing Day to me. 🥰
It’s that time of year again when I lay all his It’s that time of year again when I lay all his presents out and say I’m ready for him to be another year older and then quip that I am NEVER ready for him to be another year older. But 10 man? I don’t know, it feels so… significant. Double digits, a decade, it somehow feels different from all the other birthdays. I can’t quite believe it tbh. Anyway as he’s having his birthday here (tomorrow) but his party in Plymouth next Saturday it has been decreed it’s his birthday all week. And what with the grand age he’s turning, I think that sounds perfectly appropriate.
Breakfast in bed (toast and a makeshift cloche - w Breakfast in bed (toast and a makeshift cloche - we fancy!) and three cards and a sunflower he planted from seed at school 😱! Now off out for lunch. Very much a Happy Mothers Day to me! And to all the mamas I know. May you be treated like Kweens today!
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