Worth a thousand words……

Back in May I wrote a very personal post about mental health. About how receiving a life long diagnosis such as Autism for your child is shattering and how little support parents are given to come to terms with what it means to them, as a family, as parents and as people. It was an important post to write. I was, and still am, incredibly proud of it.

Any who shortly after publishing it on the blog I was contacted by Spectrum Inspired; an American based not for profit, whose mission is to:

“give [ASD] families a platform to voice their struggles, celebrate their victories and share their story; all the while, removing the stigma and stereotypes of what is thought to be representative of Autism and show the world just how broad and beautiful the spectrum is.”

I’d been following Spectrum Inspired (via their blog and Instagram account) for some time, and was so flattered to hear that they really appreciated what I’d written. And I was bursting with pride when they asked if they could use my post as an article for the next edition of their printed magazine 😱.

I agreed immediately, just happy that my thoughts and support might reach more Autism families across the globe. I then had a completely unexpected email back from Melissa, asking me if we would like a session with a professional photographer, to provide some images to go with the article. She explained they had a partner photographer not far from us and would be happy to arrange a session, with all images gifted to us at the end. Well! Who could say no to an offer like that?

We prepared Oscar for the session with Redhill based Amanda Dalby, by showing him the very useful social story that Spectrum Inspired provided. The idea was to capture our lives, as they are. It was suggested we be natural, relaxed and just ignore the camera. I can’t tell you how difficult that was for me on the day! But after an initial reticence from the boy (“NO not me, photograph my family“), he turned out to be a pro!

© Amanda Jane Dalby 2017

The lovely Amanda came to the house early one Saturday evening and Oscar was keen to show her all his toys and especially his new Lego train.

© Amanda Jane Dalby 2017

He then quite randomly told us he wanted to bake a cake! Of course he did !

© Amanda Jane Dalby 2017

After an hour or so we decided that, as the evening was so beautiful, we’d go and see if we could get some good shots up at a local National Trust beauty spot, The Devil’s Punchbowl. And boy am I glad we did!

© Amanda Jane Dalby 2017

© Amanda Jane Dalby 2017

© Amanda Jane Dalby 2017

We had the most amazing hour running here, there and everywhere. Basically, following a very happy little boy. Going where he wanted, playing his games and dancing to his tune. I tell you, Amanda certainly earnt every shot she got that day!

A few weeks ago the magazine was released. And my copy arrived today. There are my words in print. And there’s Oscar. And I can’t tell you how proud I am of both of us.

 

Thank you to Melissa, Amanda and everyone at Spectrum Inspired for such a beautiful gift. For seeing me, for seeing us and for trying to ensure the world sees us too. And not just my little family, but the entire Autism community.

After all what’s the point of awareness, if we are the only ones who are aware?

© Amanda Jane Dalby 2017

 

Mental Health and the Autism Mama

9th March 2015. A Monday. A stuffy office in the paediatric department of the Royal Surrey County Hospital. Six adults all agreeing that a diagnosis of Autism Spectrum Disorder was appropriate for my almost three year old, blonde haired, blue eyed son. I remember so much about that meeting. The room was so hot. I felt so sick. If I’d had to picture the setting my world would fall from under me in, this small grey room with uncomfortable chairs wouldn’t have been it. It would have been exotic, dramatic, or at least better looking. But here we were.

In those first few moments I was given a plethora of leaflets about support for Oscar. This agency would help with this, this one with that. It was mind boggling, and most of it went straight in the bin. It was too much to take in at that moment. But the one question I did ask was which one of these leaflets was for the agency that was going to support me? Which one was going to give me the help I was going to need now my parenting journey had been screwed up and chucked over the doctor’s shoulder. I remember saying “That’s great, thank you. And what support do I get?”. The paediatrician laughed in my face. Literally. “There isn’t any!” she told me. Any that was that.

I remember going to the doctors several months later to apply for a one off Carer’s prescription grant, as suggested by our Early Years case worker. The doctor asked why I wanted the grant and I started to explain how hard looking after Oscar was and how desperately sad the diagnosis had left me. She looked on awkwardly while I started to cry and ask again, where was the support for me? Was there nothing for post diagnosis depression similar to post partum depression. She scolded me and told me that was something very different and to come back if things got much worse. I left with the feeling I’d wasted someone’s time and that I should be coping better. I never went back.

But things didn’t get “better”. It just got ‘different’. And still no agency was interested in how I was coping. Several people suggested peer support, but I’m not good at leaning on friends. I tried to find a SEN support network online, but struggled taking on everyone else’s sadness as well as mine. It could have been extremely helpful, but I just felt like I wasn’t giving as much as I felt I was taking. Or as though everyone was doing SEN parenting better than me. Even down to the amount they worried. It felt I wasn’t worrying enough. So I had to step back.

And all the while what I was really feeling was akin to grief. A grief for the child I thought I had. A grief for the parenting journey I thought I was on. A grief for the kind of relationship I would never have with my son. For the mother I would never get to be. All while coping with child who needs me in a way I’m still figuring out on a daily basis. And mentally berating myself for not doing, or coping, or being better. Because I should be grateful I had a child at all.

Eventually I knew something needed to change. My heart felt like it was breaking all the time and I hadn’t experienced anxiety this bad since I was a teenager. I also realised no one was going to formally offer to help me. I was so disillusioned with the support (or lack of it) I’d been offered by the NHS, that I didn’t even bother going to them. I found a private therapist. And it’s turned out to be one of the best decisions I ever made. I struck lucky and found someone I felt comfortable talking to immediately (having seen counsellors in the past I know this is not always the case). And things I’ve never said to anyone have now been said. Burdens have been laid down for a while.

I’m not saying everything’s fine and hunky dory now. It’s not. I’m still coming to terms with plenty of stuff, stuff I sometimes think I might never find peace with. But I keep trying. Because for all the support Oscar gets as someone with ASD, none of it as important as the support he gets from his parents. From me. And if I don’t get the support I need to give him the best of me then none of the other services are worth jack.

I still think it’s a joke that parents going through such a traumatic event in their lives are just expected to get on with it without support. I hate that I was made to feel stupid for asking for help. And I’m so heartbreakingly sad that there probably other parents out there right now whose lives are being blown apart by a diagnosis they never wanted and with no idea how they will ever put their lives back together again.

So on this #worldmentalhealthday, I just wanted to fly the flag for SEN parents. The overworked, over looked, under supported. Your mental health is worth everything. You deserve support, as much as anyone. Don’t be afraid to ask for it. Ignore those who laugh in your face, or tell you you’re are not as in need as new parents. You are. Because supporting your mental health is really supporting your child.

And isn’t that the most important thing?

My Half Term Artist

Half term has been and gone, and much as I kind of dread school holidays and how we’re all going to cope, this half term was super. I think a week, with enough distraction, is just enough for him. And it’s just enough that I don’t resort to the iPad all day every day!

Dont get me wrong he was on the iPad a fair amount. Especially in the mornings when he’d been up since five and mama seriously couldn’t be doing with “building a bigger track” right now. Am I the only one whose child seems to wake up fully ‘on’? It’s like he’s got some internal flip switch, that I just don’t have!

Anywho once I had come around sufficiently, we had some really great days this half term. Lots of joint interactions, some of which lasted ages. I did my heart good to see him really collaborating with me and really showed me how far he’s come since starting school.

We did all sorts last week, from trips to the park, to train rides, to hair cuts to meeting up with friends. All of which was wonderful. But really the things I enjoyed the best were the days when we turned to the art cupboard.

When Oscar left Nursery back in July, he still wasn’t drawing anything, despite his well developed fine motor skills, and the artwork that came home was only ever daubs of colour. As the Educational Psychlogist noted, he still wasn’t engaging in any “meaningful mark making”.

That all started to change almost as soon as he started school and over the last term the paintings and drawings have been becoming more and more recognisable. And not only is he now drawing things both he and others can identify, he loves it. And I mean LOVES it. So last Tuesday we spent a couple of hours with pads of paper and markers and he went for it. Each image he drew, I cut it out and he’d blu-tac it to the wall.

And before long the walls were covered.

The aquatic wall, including fish, sharks, “shark whales” and even a squid! All named by Oscar

Sodor. Can you see the steam and the tenders? So detailed!

Alllll of the rockets. Blast Off!

I worked out that over the course of the week (as he added a few more here and there over the week) he drew 44 fish, 31 engines and 24 rockets. And 4 ambulances, randomly. He’s nothing if not prolific!

Yes he has his favourite subjects, but these marks ARE meaningful. I kind of wish the EP could see them. I think they’re ruddy glorious!

Obviously when he went back to school I needed a bit of my own space back and yes I did take them all down. But never fear, I painstakingly transferred them to his room. The fish are swimming up the stairs and the engines hiding in an alcove. And he loves them.

The aquarium is now swimming up the stairs to his room!

And for that I’d have all the blu-tac marks on my walls in the world 🙂

 

Boolino Friends Review – Follow Me Around the House by Camille Garoche

As a Boolino friend, you’re never really sure what kind of books are going to be offered for review. As Oscar’s tastes change at the speed of light at the moment, it’s lovely to have a real mix of reading material to choose from. When we were offered Follow Me Around the House by Camille Garoche however, I wasn’t sure. It was described as a lift the flap, board book. Now I know Oscar still likes to revisit his old favourites occasionally (Dear Zoo anyone?), but really I thought we were over these kind of books. And we may well be. But Follow Me Around the House is nothing like the baby books of old.

Follow Me Round the House by Camille Garoche

The Book

Firstly the quality is far from the board books of our past. Matte finish and heavy, it’s extremely tactile. The story is cute but also very quirky in feel, (unsurprising when you consider Garoche is French. It definitely has that wonderful Gallic peculiarity about it). But all of this pales into insignificance when you come to the bones of the book; the illustration.

The Illustration

The book follows Luna, a Siamese cat, who leads her wards, three new puppies, round the house into which they have been born. Garoche has illustrated the most beautiful house and given an almost dream like quality to the amazing details.

Garoche’s illustrative background is clear to see in this whimsical tale

More than just a ‘lift the flap’ book

Lift the Flap

The ‘lift the flap’ elements are so well combined into the illustrations, that this feels like more of an immersive experience than a children’s book. Seriously, I spent ages just exploring and finding the well hidden secret artwork. It’s a joy to read, but it’s much more of a joy to be a part of.

The detail in this kitchen is beautiful

Just a cello?

Of course not! It’s a bunny bed!

Thoughts

I personally feel this is a book that would be more suited to older or more mature children who would enjoy the time this book demands. To be honest, I wouldn’t even be afraid to get this for an adult, particularly one who appreciates whimsy. Or cats.

Oscar has a bulging bookcase in his bedroom, with free access to hundreds of books. He also has a separate shelf, one he cannot reach alone, that holds a very special collection of books. Ones we feel he is too young for yet or ones that are too precious to risk him damaging. These are books we read together, or books we are saving for the future. Follow Me Around The House is such a gorgeous book, it deserves a bit more care than my boisterous four year old is ready to show just yet. And for that reason, it’ll be joining the others on the special shelf.

For now.

“Ooh, isn’t it delightful here”

The Santa Experience at Marwell Zoo

What do you look for when you take your children to see Santa? With the myriad of opportunities available these days, I like to think it’s getting easier to find one that speaks to all your child’s needs, whatever they are.

For us, it’s important that there’s no pointless hanging around and even less that there’s any queuing. Oscar’s Autism isn’t massively sensorially based, but he does need to be able to move as much as possible and queuing just makes no sense to him (I often wonder if he’s really British at all 😉 Joke!), to the point it can make him anxious. He also struggles to concentrate for long periods of time on one thing, preferring lots of small activities to one big one.

So when we were invited to come and meet Santa at Marwell Zoo the description they gave to us ticked lots of our boxes straight off. No queuing, no pointless hanging around and plenty of activity. It sounded too good an opportunity to pass up.

Meeting Santa at Marwell Zoo is a real event. We’re not talking just chatting to a big man in a red suit and white beard, it’s a whole experience. We were well prepped as to what to expect and couldn’t have had a better time. We arrived at the zoo before our allotted time, which gave us time to go round beforehand. I think Oscar would have been heartbroken if we’d gone all the way to the zoo and not seen the animals, Santa or no Santa, so we were really grateful that our ticket included entrance to the zoo. However, it doesn’t have to be, if you’d rather just visit for the Christmas experience.

But first, giraffe

But first, giraffe

We made our way round the park in a loop, ending up at Marwell Hall and ready to start our Santa Experience. The visit was broken into sections, which while very clear, flowed brilliantly:

Join the elves in Magical Marwell Hall and warm yourself with a glass of mulled wine or blackcurrant and a festive treat.

We were welcomed to the perfectly beautiful Marwell Hall, by a team of elves, all dressed to the nines and all who seemed to have been thoroughly briefed on Oscar’s Autism and his needs, which was a wonderfully thoughtful touch. We got our drinks and Oscar had a mince pie before taking a real shine to one of the elves’ outfits. Mistletoe really earned her Nice badge that day by removing her shoes, apron and hat and letting Oscar try them on. Baring in mind this is the boy that doesn’t really do dressing up, he had a whale of a time! He was so happy, it bought a tear to my eye and we hadn’t even seen Santa yet!

Oscar takes a shine to Mistletoe the Elf's uniform. So she gives it to him to wear!

Oscar takes a shine to Mistletoe the Elf’s uniform. So she gives it to him to wear!

My little Elf

My little Elf

To amuse the children while we waited for everyone to arrive there was a touch screen Naughty and Nice list for the children to check, which I though was a really clever touch, especially as the children could find their own names on the Nice list and their favourite super villain on the Naughty list!

Be charmed by Mrs Claus whilst she reads the enchanting tale of ‘The animals that saved Christmas’

I had explained to the staff beforehand, that Oscar was unlikely to sit and listen to a story. They couldn’t have been more understanding and suggested that we skip that part of the experience if we wanted to. However, on the day we decided to give it a go. The staff were prepared for him to leave at any point, which was very reassuring.

Mrs Claus was waiting for us in a gorgeous ‘woodland grotto’ complete with trees, snow, toadstools and tree stump cushions. She proceeded to read a beautiful Christmas story, set at the zoo and based around the animals, which was a clever touch. And blow me if Oscar didn’t sit with the other children and listen to part of the story. OK, he didn’t make it the whole way through, but by allowing him to move around as and when he needed he lasted for at least 3/4 of the story. It blew my mind!

You're not seeing things. Thats Oscar. Sat on a carpet. with other children. Listening to a story. Regardless of how long that lasted it happened and I couldn't have been prouder. The fact that Mrs Claus was wonderful and read such a cute story may have helped!

You’re not seeing things. That’s Oscar, right in the middle. Sat on a carpet. with other children. Listening to a story. Regardless of how long it lasted, it happened and I couldn’t have been more proud. The fact that Mrs Claus was wonderful and read such a lovely story may have helped!

Create your own Christmas cone tree

If Oscar had surprised me in the previous two sections, how he reacted in the craft based activity amazed me. We were lead into yet another beautifully decorated room, laid out with everything needed to make ice cream cone Christmas Trees. I expected him to just choff the sweets and ignore the craft, but I need to stop underestimating my boy. He sat and happily made a beautiful tree. As did mummy! The elves then wrapped them in cellophane and ribbons and when we were ready lead us to the main event!

Every family was assigned a table to make Cone Christmas Trees. Such concentration!

Every family was assigned a table to make Cone Christmas Trees. Such concentration!

Family Savage. A rare photo indeed!

Family Savage. A rare photo indeed!

Meet Santa in his sparkling grotto and receive a special gift

We had agreed with the park beforehand that Oscar would be the first child to go and see Santa, to avoid any prolonged waiting and they were as good as their word. The whole team knew Oscar was to go first and again their communication was much appreciated. We were lead into another room, where Oscar was shown a curtain to pull back to reveal Santa’s grotto. It really was magical! After a quick peek he ran into the room and whilst he didn’t seem blown away by the fact that the big FC was sat there on a throne, he did go and chat with him, after having a look around the room.

Who's through there?

Who’s through there?

I really feel the ‘Santa’ can make or break an experience like this and Marwell’s Santa was fab. He spoke to Oscar like you would expect, but I got the feeling he’d also been briefed on Oscar’s needs as he didn’t seem phased by Oscar’s apparent lack of interest. He didn’t ask for a hug or for Oscar to sit with him (although at one point Oscar chose to go and sit next to him) and he didn’t seem upset when Oscar’s most pressing question was “Where’s the presents?”. Love him. He didn’t mean “wheres my present?” (well not completely), it’s just you very rarely see Santa without presents in books and films do you? And he’s a literal thinker my boy. Santa happily handed over a gift, which we let Oscar open immediately. And when Santa asked for high five, Oscar happily obliged. It was fantastic!

Oscar chose to go and sit with Santa. Even if he didn't want to look at him!

Oscar chose to go and sit with Santa. Even if he didn’t want to look at him!

Hey dude! Oscar meets Santa

Hey dude! Oscar meets Santa

The only thing I wished I’d done differently was taken the boy camera. Much of the experience was dimly lit and my iPhone photos just don’t do the day justice. We did however purchase two of the official photos of Oscar meeting Santa, which I thought were great value. Both were printed and framed in a carboard sleeve as you would expected, but we were also given hi res digital copies. All for £10.

Oscar opens his first Christmas present of the year (a light sabre and a Star Wars sticker activity book!)

Oscar opens his first Christmas present of the year (a light sabre and a Star Wars sticker activity book!)

My boy is too cool for school. Who wants to hug Santa when you can High Five!

My boy is too cool for school. Who wants to hug Santa when you can High Five!

Thoughts

Would I go back? Totally. If the staff were as understanding and well briefed as this time, I’d be there in a shot. Oscar loves Marwell and has done for years. Who wouldn’t want their child to meet a real childhood icon in their favourite place in the world?

We had such a lovely day and we really did make a whole day of it. Although I do fear it’s kind of ruined shopping centre Santa’s for us for life 😉

A day well spent!

A day well spent!

 

 

 

Thank you so much to Marwell for the invitation to meet Santa.

I was not paid to write this review and as always all opinions are my own.