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.

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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 😉 .

 

I have learnt

A week. I’ve been a school boy’s mum for a week. Or in fact over a week. And I can’t quite believe it.

Maybe I should write a ’10 things I have learnt about school age children/having an SEN child in a mainstream school/the school gate’ post. They seem to be popular. But to be honest I’m not sure I’ve learnt very much about any of those things.

I know I’ve learnt that sending my child off to school in tears breaks my heart in ways I was absolutely not expecting.

I’ve learnt I can hold my tears back when he really needs me to. And that they will engulf me when I let them go.

I’ve learnt that having a child beg to stay home while hiding under the duvet, a thing he has NEVER done before, and yet staying calm and collected and kind but firm is ridiculously hard.

I’ve learnt I don’t care about what he’s actually doing in the day, as long as I hear he’s OK.

I’ve learnt how proud a silly little sticker can make me.

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I’ve learnt my capacity to stay on message is immense and, for Oscar, the very kindest thing I could possibly do.

I’ve learnt that when he’s ready to ‘tell’ me things he will.

I’ve learnt how amazing my son’s capacity for communication actually is, even if that includes play acting with his very favourite soft toys.

I’ve learnt that when Oscar asks to take a bear to school with him, I will secretly squeeze and whisper to that bear to please look after him.

I’ve learnt about my son’s capacity to find coping mechanisms quickly and appropriately.

I’ve learnt how quickly I can turn around a load of dirty uniform.

I’ve learnt that I was ready to let him go. And to have him come back.

I’ve learnt the joys of time.

I’ve learnt that my mind will still automatically jump to how to manage a situation for Oscar, even if he’s not there.

I’ve learnt how much people are rooting for Oscar.

I’ve learnt how supportive my community is. And how much I truly appreciate that.

OK, so maybe I have learnt a few things. Unexpected things, learnt through painful lessons. But learnt none the less.  I cried every day last week. But only one day so far this week. I didn’t cry yesterday. I didn’t cry today.

I’ve learnt that he will cope.

I’ve learnt that I will cope.

boy on path

On his way

Tomorrow

I never had that rush of love in the hospital when Oscar was born. The feeling everyone tells you about. That sudden lightening bolt of realisation that this is what life is all about and has been all along. No, I never got that.

Although it’s not something I’ve discussed before, the truth is, I spent so much of my pregnancy convinced the embryo, then the foetus, then the baby wouldn’t make it into this world, that when he did, all I felt was relief. I spent so long preparing for him not to arrive that when he did it was hard to reconcile that fact.

His earliest days in the hospital were harder than I ever imagined and being immobilised and traumatised by an emergency c-section, meant every ounce of energy I had was spent on just getting through the next minute. I don’t remember ever feeling love in those early days.

The first time I remember feeling anything close to the ‘rush of love’ people talk about was about three weeks later. It was the middle of the night. I guess he’d just been fed. Ben was asleep and I had just laid Oscar down in my crossed legs where he promptly fell fast asleep, something he wasn’t overly keen to do in the Moses Basket that night. It made me chuckle and I looked down to take a photo of the cheeky sleep thief lying there in my legs and boom! I realised I loved him.

baby asleep on a bed

The moment I realised I actually loved my son.

Fast forward (because it really has been fast) to today, four and a half years later. Today I am preparing for tomorrow; his first day at primary school. I have his uniform all ready. Everything is labelled, I just need to wash his coat and pack his bag. Ben has a couple of trouser hems to take up and then we’re ready. Only of course we’re not.

I thought I was. Summer has been hard and to be honest I’ve been ready to let someone else help with the effort of raising an autistic child for a while now. But turns out today I can’t stop crying. Big gulping sobs. All I can think about is my baby. The difficult, confusing, terrifying, baffling baby and wondering where did he go? The pain is visceral and I have wondered today whether this is why people have more than one child? To delay having to feeling this sadness? To know that’s it for them? That parenting a baby, a toddler is over? Maybe not. But right now it seems like as good a reason as any.

I’m writing this on his bed. Looking round his room that still has vestiges of the nursery it once was.  The pirate decal, the baby swimming certificates, the shelf where we kept nappies and wipes and nappy sacks. This room could do with a refresh I know that. Some things have already gone. The cotbed, the rocking chair, the changing mat. But I just can’t bring myself to change everything just yet.

Anyway, tomorrow. Despite being registered for transport, we’ll be taking him ourselves on his first day. I want to be there, to be able to reassure him. Hell, I want to stand by his side all day and make sure everyone understands who he is and what he wants. But I can’t. They will have to learn. Just as I did.

This is not a letter to my son on the eve of his education journey. It’s not an essay to discuss the benefits or downfalls of children starting school at this age. Its not about how I’m not ready to let him start moving away from me, or how frightened I am for him, an autistic child, making his way in a world that wont always understand him. I mean it’s a bit of all of things, but really it’s just a mummy,whose relationship with her son has never been easy, confessing how much she loves him.

And from three weeks old, always has.