Autism

How do I say Thank You enough?

18/07/2016 by MrsSavageAngel Leave a Comment

OK, so I know some of you have finished term already and most of you are probably more organised than I could ever hope to be, but I’ve spent the last few days agonising over what to get Oscar’s preschool Keyworker and Teaching Assistant as end of term thank you presents. These women have been working with him since he started in January 2015. They have bared the brunt of his frustration, dealing daily with his temper when he can’t express himself. And yet they are also the ones who have worked with him every session to ensure he can verbalise his wants and needs and to help him understand the very basis of communication, the back and forth, the my turn, your turn, without which he wouldn’t be able to manage communication at all, in any form. Yeah these ladies are owed big time.

But really, nothing is going to be enough. Nothing is going to express how thankful we are for their patience with him, or how grateful for the time they have taken with all the extra paperwork that comes with a child on the spectrum (and believe me it’s loads!). I’ve always been cautious of buying teacher gifts. I am loathe to buy any kind of trinket, anything without a practical purpose, because (and correct me if I’m wrong teachers), if everyone in the class did that you’d be left with 30 trinkets to find a home for. Every year! So I made a decision at the end of summer term last year, to always buy something consumable. The appreciation can be felt, but won’t take up room in their homes. Well that’s my theory anyway.

So back to this year. I don’t really know them well enough to buy them alcohol (also is alcohol appropriate for a preschool teacher?). Previously we’ve gone for posh coffee (for one) and posh tea (for the other) or vouchers for a coffee shop so they don’t have to make their own. But this year we wanted something that made a little bit more of a statement.

Which is why we we’ve gone for a box of Harry Specters chocolates each. A box of chocs might sound boring and unambitious, but bare with me. Harry Specters is a very special chocolate company, based in Cambridge. Their mission states:

At Harry Specterâ€™s young people with autism are involved in all aspects of creating our award winning chocolates from production to packaging, sales, photography, graphic design and web design. In our safe and supportive environment they are free to use their strengths to grow, develop and build confidence.

In a country where 85% of adults with Autism are unemployed, Harry Specters are looking beyond the myths and media portrayal of Autism and have built an entire business model around utilising the strengths of an individual. As it should be! That they are also winning award after award for their chocolates just shows how this model is working. It just took one woman to look at things a little differently, to have faith in these people (and yes she is an Autismmama too)!

Box of chocolates — These are the chocolates we have chosen. Image courtesy of Harry Specters.

Don’t they look beautiful? Yes I want them to take them home and eat them, preferably away from any children and perhaps with a glass of something chilled. But while they do I want them to know how important they were in Oscar’s, and our, lives and how very grateful we are for their energy and how much O will miss them . Even if he doesn’t say it! Yes he’s ready to move on in his academic career, but he wouldn’t be had it not been for them.

It just takes one person to believe.

Toddler boy in buggy — Ready for his first day – Jan 2015

Maybe I’ll just put this post in with the chocolates. I’m not sure I’ll be able to convey all this in person. Well not without crying anyway!

School Update

20/05/2016 by MrsSavageAngel Leave a Comment

So yeah I guess I should update about Oscar’s school situation! It’s been a while. But for the longest time it was so up in the air. To be honest it’s not exactly ‘firmly on the ground’ now, but it’s got one foot on the floor and that’s good enough for me at the moment!

So if you remember it was agreed a while ago that Oscar should have an EHCP (an Educational Health Care Plan, the document that replaced the old Statement of Education) due to his diagnosis of Autism. We were thrilled by this decision, as this (legally binding) document sets out the support that he will need, to get the best from his education. Super! It also gives us as parents some heft when it comes to deciding which school he should go to. Fabulous, but this is a huge responsibility. And stressful. I mean what if we get it wrong?

Anyway, that aside, to enable us to try and make the right decision we looked at some specialist schools and some mainstream schools. We knew the ones we liked, the ones we loved and the ones we couldn’t stand. And we passed that info onto the local authority. Some of which was ignored. I think that was the hardest thing. Having to rely on people who weren’t doing what we expected them to do. Several times I was given details of organisations to go to for ‘advice’, when all I really needed was for someone to just do their job properly.

Eventually we were offered the specialist school we (for a myriad of reasons) couldn’t stand. And despite some efforts on their part, the LA just couldn’t get him a place at the specialist school we really liked. And do you know what? That actually helped clarify our minds, more than they had been for a while. Our Plan A had always been to send him to our first choice of mainstream school, one just out of our catchment, but one we felt could give him everything we wanted. And when we got offered a place there, I cried. Being able to put the specialist school question to bed (for now, everything is always ‘for now’ with children!) actually felt so good. I took that as a sign that, for now, this is the right thing to do.

So now we know where he’s going! Woohoo! We have discussed his EHCP with the school and they are totally on board with it all. There is one issue we are jointly going back to the LA to try and amend, and as this involves money it won’t be the easiest argument (because it will be an argument), but I feel like someone’s got my back now, like I’m no longer shouting into the ether. And that’s fantastic.

And when people ask where he’s going I can finally reply, straight up and positively. And that feels the best. I think because we’ve had to faff around for so long over getting his place confirmed that actually I don’t feel as upset about him starting big school as maybe I would have done had it been straightforward.

Now, if I could just get over how sad the thought of buying him black shoes makes me ðŸ˜

Birthday gifts for a special four year old

10/04/2016 by MrsSavageAngel Leave a Comment

I wrote a few weeks ago about our quandary in trying to decide what to get Oscar for his fourth birthday. Contrary to what you think you might know about children with Autism, Oscar isn’t particularly obsessive and is ‘in to’ whatever it is he likes that day. He’s still a fan of Thomas the Tank, and has started to take an interest in crafting and books. But other than that we couldn’t really think of any birthday gifts he’d really appreciate. We had a notion to perhaps get him his own baking equipment, but was that really what a four year old would want?

The answer was YES!

If you recall we were thinking of getting him a really sturdy Mason Cash bowl for when he bakes. Which we do regularly.

When we went to look on the Lakeland site, we found the one we wanted was on offer. It seemed like a sign. So we went ahead and got him the Blue 29 inch Varsity bowl. And it didn’t disappoint when it arrived. What a beauty!

The morning of his birthday, we bought him in to our room and showed him his presents. He has no real understanding of time and abstract concepts like birthdays (yet), but he loves opening presents and playing with the contents. That was enough for him!

He was so excited when he finally opened his bowl. More than we thought he would be. Then he opened his second and third present from us and insisted we ‘make’ immediately!

So downstairs we went and made the gluten free chocolate brownies from the mix in the Delicious Alchemy Gift Box we bought him. He loved having his own ‘giant bowl’ and it was so much sturdier than anything else we had used in the past. And the fact he got to us his own spoon, engraved with “Oscar’s ‘Making’ Spoon that we bought from Auntie Mims on Not on the High Street, well, this was one happy birthday boy.

Not many four year olds want to make their own birthday cake. For breakfast! — Happy Birthday to meeeeeee!

So yeah, not many four year olds would want baking equipment for their birthday and even less would be interested in making their own birthday cake for breakfast. But that’s my boy. He’s his own man. And we couldn’t be prouder of him.

Parenting from a special perspective with Lisa from mrssavageangel

29/03/2016 by MrsSavageAngel Leave a Comment

A few weeks ago I was asked if I would like to be interviewed for the Parenting from a Special Perspective over on Diary of an Imperfect Mum. The series looks at SEND parents and the differences we find in our parenting journey. It was a great interview to do. I loved answering the questions and I’m incredibly proud of the post. Therefore I’m reblogging it here. Enjoy!

Parenting from a special perspective with Lisa from mrssavageangel

Oscar’s first trip to The National Marine Aquarium, Plymouth

29/03/2016 by MrsSavageAngel Leave a Comment

On a recent trip to our childhood home town of Plymouth, we decided to try and have some family days out. We knew we wanted to spend some time on the Moors (and who wouldn’t) but we felt it was time for Oscar to try an ‘attraction’ again and so thought we’d give the National Marine Aquarium a go.

Oscar’s history with ‘attractions’ has been rather limited to be fair. We’ve stuck to large outdoor spaces, such as Zoos and parks and even then at potentially quiet times and with mixed results. His Autism means he doesn’t always access the attraction in the way other children might. And that’s fine, but it sometimes begs the question why pay out for him to just run around, when he can do that at the local park for free? Anyway, his speech and understanding are changing so much at the moment, that we thought it would be a good time to give him the opportunity to try an indoor attraction for a change. And as his current favourite book is ‘Barry the Fish with Fingers’, we thought the aquarium would be a good one to get him on board with.

The morning of the visit, we drew him a very basic visual timetable explaining that we were going in Daddy’s car, to see the fish at the ‘Aquarium’ and then we’d have some sweets and a juice box. Not sure why I added the bit on the end but a motivator felt like a good idea and I assumed the cafe in the aquarium would have something we could grab.

We knew the aquarium was likely to be busy; on a Saturday, the Saturday of Easter Weekend, a rainy Saturday of Easter Weekend!!! We planned to get there first thing, but getting ready took longer than anticipated and we arrived within 50 minutes of it opening. While Ben parked the car, I walked Oscar over the bridge to the entrance. We looked at the fish artwork and sculpture together and he was having great fun pointing things out. Then we got to the entrance. While I knew the place would be busy it didn’t even occur to me how big the queues would be. Why we hadn’t thought to book fast track tickets online (which you can do and which save you from queuing at all!) I don’t know, but I took one look at that queue and knew it wasn’t for my guy. We headed back to the car, having seen the ‘fish’ (artwork) and hoped that was enough.

Oscar insisted this sculptre outside the aquairum was a 'Dragon Fish' and that it was breathing fire! Photo by Patricia Richards-Skensved — Oscar insisted this sculpture outside the aquarium was a ‘Dragon Fish’ and that it was breathing fire! Photo by Patricia Richards-Skensved

He was fine with this change, and he had great fun playing with his cousin at my mum’s instead. Only then, over lunch, he started to ask: ‘Quarium?’ I was blown away to be honest. You never can tell how much is going in and yet it would seem the answer is ‘a whole lot’. We knew then we were going to have to go back. So we decided to head up there towards the end of the day. We got there around 3.45pm to find no queue to speak of and headed in. As Ben was paying they locked the entrance behind us. Phew, we timed that just right then!

And then we set off following the signs. Oscar held our hands, he walked, he waited when he needed to, he shocked us both! Then he came to the tanks and instead of running past, giving them a cursory glance he really stopped and looked. The tanks in the NMA are all so accessible to little ones and Oscar loved that he could get right up close and personal with the fish. He even commented on their colour and size and several times swore he saw ‘Barry’ (of the ‘fish with fingers’ fame 😉 ) . He went back and forth between a couple of his favourite areas, but for the most part he progressed between the zones when we asked without any fuss.

All the high tanks have steps up to them or are accessible from the floor.

Look there's Barry! — Look there’s Barry!

He loved the overhead/undefoot tanks. He was entranced!

He even interacted with other children visitors and when we came to the main tank viewing room, Ben and I sat down and Oscar quickly found another little boy to chase, and be chased by. It was quiet enough that nobody minded and it left him red faced, but happy.

Photo From Expedia — The National Marine Aquarium’s 2 million litre water tank. And a space to run around! Photo from Expedia

Would we go back? Absolutely, and I would absolutely go at the end of the day again, something I’d never considered before. It was quieter sure, but it was also just enough to time for him to enjoy it and not get bored. It also gave him a natural cut off point, i.e. we had to leave at 5 because they were closing. That worked really well and he was able to have a quick look round the gift shop at the end (he got a book by a local author) and head back to the car, happy as a sand boy. The only issue we had was parking. The aquarium doesn’t have its own car park and the nearest ones are a short walk away. This might be fine for some children, but Oscar often struggles to walk safely along busy roads and this was a deep concern. As it was Ben dropped us off by the Mayflower steps and was then able to (luckily) park on the seafront a minute away. But had this not been the case this could have derailed the visit before we’d started!

If you’re in the area we would highly recommend it. And if you have a child with Autism, I learnt that the aquarium will be holding a ‘quiet session‘ on 2nd April to mark World Autism Day. This might be a great way to introduce your child to the attraction. The aquarium have produced a great visual support document for those attending (available on the website), something that might be useful for any visit to be honest! My only advice would be to check out the parking situation prior to attending.

At the end of the day thought, we couldn’t get over how good the experience had been. I was so proud of my little guy and so pleased that the prep we did paid off. It can take quite a lot of gumption to throw yourself headlong into a situation that could be incredibly stressful. As it was the National Marine Aquarium made it easy for us and we’d like to thank them.

And in case you’re wondering, yes, we stopped in at Tesco on the way home and bought him sweets and a juice box.

Thank you to the National Marine Aquarium for a great day out. This was not a paid review, rather it’s just an account of our day out as a family and we paid for our tickets ourselves. Although had I remembered Oscar’s DLA letter, I could have got in for free as his carer. Next time!