Autism

Mental Health and the Autism Mama

03/05/2017 by MrsSavageAngel Leave a Comment

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

22/02/2017 by MrsSavageAngel Leave a Comment

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!

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 🙂

The Santa Experience at Marwell Zoo

13/12/2016 by MrsSavageAngel Leave a Comment

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 ðŸ˜‰ 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.

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!

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 â€˜The animals that saved Christmasâ€™

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!

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!

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!)

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 😉

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.

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

25/11/2016 by MrsSavageAngel Leave a Comment

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

24/11/2016 by MrsSavageAngel Leave a Comment

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.