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 🙂

 

How I met Father Christmas – and why I wouldn’t do the same thing for my son


When I was a kid, going to see Father Christmas (because back then he really was just Father Christmas. I’m a bit more interchangeable with what we call him now. Father Christmas, Santa, I don’t really mind, Oscar knows they’re one and the same) was one of the highlights of my year. I can’t tell you how magical it was for me and that was due, in no small part, to the Father Christmas we used to go and see.

If you grew up in or around Coventry in the late 70s/early 80s, I’m guessing you also went to see Father Christmas at the Co-Op, a department store in the city centre. I say that simply because I don’t remember ever going to see him anywhere else. And to be honest I never wanted to go anywhere else. I went with my mum and Nanna (and probably my brother although I don’t remember him being there) and it was almost more exciting than Christmas Day itself. Almost 😉 !

It was super special to me and thousands of others over the years, because you see they didn’t just have a Santa in a chair that you queued up to see, oh no! Before you went anywhere near a guy in a red velvet suit you had to get the sleigh to Lapland. Because you see we weren’t going to see any old Santa in a department store. No, we were travelling to Lapland to see the actual man himself.

My memory of 35(ish) years ago, is some what hazy, but I clearly remember that the experience began with queuing up and being taken through a door into a room. The room was small and dark and lined with benches all facing a wall, in front of which where two (models) reindeer! Once everyone was seated, music and jingle bells would start, as would a projection of moving snow in front of the reindeer. It looked as though they were actually ‘dashing through the snow’. Suddenly we weren’t in just a room, we on a sleigh and we were off to see Father Christmas! My memory also wants to say that the seats moved, tilting as we dashed through the snow, but I honestly can’t see how that could have been and maybe I’m imagining it. Did it?

The most jaw dropping bit of the whole experience for me, was when we ‘arrived. The ‘sleigh’ would stop and we would be shown out of the room, but, and this is the best bit, everything outside the room was different to when we came in. We were in Lapland. As a three and four year old that blew my tiny mind. It was the most exciting part of the whole deal. We had actually traveled to the North Pole! While I’m still not 100% sure how it was accomplished, I’m pretty sure now, that we were just taken out of a different door than we’d come in. But however they achieved it, at the time and for far too many years after I believed we’d actually traveled somewhere. It was truly magical.

After all that seeing Father Christmas was just the icing on the cake. I sat on his lap and got my present wrapped in garish 70’s paper. I smiled for the photo.

1980s child with father christmas

Seeing Father Christmas at the Co-Op, Coventry, circa 1981. Note the reins. Oscar truly is his mothers son! Also who knew Father Christmas wore grey suit trousers under his coat?

Well I did eventually. The first year I was taken I was just one and having none of it. And quite right too. Now I have children I know how frightening that must have been to a one year old. But it’s still gone down in family lore that I wouldn’t sit on Father Christmas’s lap the first time I met him and my mum had to sit in his chair with me instead.

child crying meeting santa

My first visit with Santa circa 1979. I was just one. I look pretty terrified of the man in red. I’m still not a big fan of beards now 😉

Because the whole seeing Santa thing can be overwhelming.  The experience I had as a child was so sensorially exclusive. There’s no way I could ask Oscar to do any of what I enjoyed (eventually) as a child. Because we are/were very different children. We have in fact only taken Oscar to see Santa once in his life, when he was 5 months old and it really was more for us as parents than for him.

425669_10152014401300616_324485287_n

Oscar meets Santa in 2012. He wasn’t fooled by the beard. He tried to pull it off minutes after this!

The following year he was already struggling with things such as waiting. And following his Autism diagnosis we stopped even considering putting him through an experience we were pretty sure he wouldn’t understand or appreciate and could cause him great anxiety. Like I said, very different children.

However, as he grows, his capability and understanding grows with him. He’s much more aware this year of who Santa/Father Christmas is and this year for the first time in years we actually feel we want to give him the opportunity to see Santa; for him, rather than for us. It is true that some places are becoming more aware of inclusivity or even just providing a range of experiences to meet all needs when it comes to big events, such as Christmas. Last year I even read about some shopping centres (unfortunately not near us) running Autism friendly Santa grotto experiences, which is fab. All children should be given the opportunity to meet the big guy if they want to. However we have plumped for a very different kind of meeting all together this year, one that hopefully speaks to Oscar’s interests and needs.

Following our fabulous day out on the Watercress Line in the summer we have decided to take him on the Santa Special where you “travel in a festive traditional train carriage, while Santa and his jolly helpers visit you in your seat with a special gift.” I have high hopes for this as it combines two of Oscar’s favourite things in the world; trains and receiving presents! It also removes any need to queue, something Oscar finds so hard to do. It also gives us our own space and we can take toys and snacks to help him if needs be.

I honestly can’t wait. But wait I will have to, because I’ve booked it for Christmas Eve. This may sound bonkers to some of you, but Oscar struggles with the concept of time. My concern was if we saw Santa too soon, he might want his presents NOW, and not cope with having to wait weeks to get them. I could be wrong of course, but that’s AutismMamas for you. Always trying to second guess, always two steps ahead!

Anyway, Christmas Eve it is. Who knows it might work out perfectly and bingo, we’ll have ourselves a new Christmas tradition. I mean it’s not as amazing as actually travelling to Lapland, like I did.

But I think it could still be pretty magical 😉 .

 

Why I’m helping the PTA

raffle-tickets

People chuckle and tell me I am good for getting involved. They may surreptitiously raise an eyebrow at my keenness to join the PTA and help with this event or that event. I mean my son’s only been at the school five minutes and here I am helping with the raffle, helping with the bonfire, helping with the committee, attending every PTA meeting so far this term.

But honestly, and though I tell people it is, none of this is for me. All of this raises money for the school. And the truth is I, we, owe the school so much. Oscar’s Autism meant deciding where to send him to school, was one of the most stressful decisions I’ve ever had to make. But so far, I’ve yet to be proved that the mainstream school we chose was the wrong decision.

The school are due so much more than I can ever give them. In just this term alone, Oscar’s speech and behaviour and understanding and capacity has out and out exploded. And that’s not something I’ve done. Not something I could have ever done on my own. It’s a mixture of everything they’ve done for him and with him. Their patience, their insistence that he be included.

Yes I get involved. Yes I do my bit. Yes I raise funds. Yes I give back.

But no matter how much I do, or raise, or give to the school, it could never be as much. Not nearly as much…

As they have done for us.