Catching Up Part Three: Me

Warning: Can of worms about to be opened.

The last 12 months have been the most important of my life. And I once wrote that after the dust had settled I wasn’t sure what would be left of me, who I would be. So now that the dust has settled where am I at? Well, to put it simply I’m not on top of my game yet, but I’m doing a whole lot better.

I now understand that autism isn’t the end of the world. It’s just a different world. And a world I actually grew up in and already lived in without realising. And I know that that’s ok, I’m not 100% ok with it yet, but I intend to be and I know that’s where I’m heading. I’ve spent most of my life with my head in the clouds, one foot in reality, one in fantasy, pretending to be someone else somewhere else, playing normal as best I could, blagging my way through school and university and work, escaping into daydreams to avoid certain truths I didn’t want to face.

I’m now in the process of reclaiming and reintegrating all those denied, neglected parts of myself, getting them out in the open and airing them off. For the first time ever I’m not blagging my way through life, I’m not lying to myself about how I really feel, who I really am.

I’m working on accepting myself rather than trying to reinvent and outrun myself. I need to work with what I’ve got rather than pretending to possess attributes I don’t have and struggling to keep up the façade. I know I can go further this way.

It’s exciting and it’s positive and still the hardest thing I’ve ever done. You see I’ve always felt there was “just something about me,” something wrong and I shudder at the thought of my children ever feeling that way about themselves. I want them to be proud of who they are, proud of where they’re from. I want them to know how amazing they are and understand their true worth. And I need to find this in me so they can find the same in themselves. This is perhaps the greatest challenge of all. Acceptance.

It isn’t that I don’t know who I am, we’re not going down that line, it’s about being honest with myself about who I am, not denying or berating myself for my true feelings and opinions, having the courage to be myself and to follow, to express my passions. Respecting myself. And that includes having respect for my limitations and being kind to myself, gently encouraging myself through the situations I find hard rather than beating myself up over them. That old cliché about being my own best friend.

But underneath all this is a longing to just be able to be me and I don’t feel like I know how to be that yet; to be able to speak without stumbling over my words, to be able to dance when I feel like it without getting paralysed with self-consciousness, to be able to burst into song when my heart is singing, or to even cry openly when I feel sad, to shout at people if they hurt me. I hold it all in, bottle everything up. It’s like I’m trapped inside myself. And when I do make myself speak, I feel like a loose cannon, a little uncontrollable, you should hear all the stupid shit that comes out. I often walk away from situations wondering why on earth I said something I just said. I get so incredibly self-conscious I can barely speak.

I don’t know if I’m really shy and awkward and afraid to speak my truth because I dislike of who I am deep down inside and I’m afraid to let that person out? Or is it that I dislike myself because of my tendency to be shy and awkward? I tie myself in knots on this as you can see.

Underneath it all is the longing to be able to connect with people more easily, to feel part of the human race. I’m scared of being lonely and I’m scared of being around people who I can’t be myself around, which is even lonelier… Welcome to the wonderful world of autism.

See, I’m not there yet. This post has unravelled. Rather like my head. I should probably mention I’m on a waiting list for counselling. That recently I’ve found my fuse is so short because I’m this mass of frustration and confusion, I keep exploding, viciously, venom spewing from me in a way that makes me feel ashamed afterwards.

The dust is settling, but the real journey is only just beginning.

Catching Up Part Two: The Baby

…is now a rather wonderful little toddler. 15 months old with corn blonde hair and (I think) brown eyes, to be honest they’re not really blue or brown at the moment but they seem to be darkening so maybe brown is where they’re heading. She’s as cute as a button though.
 

It’s really hard to describe Martha without referring to how different she is to Sam, which I’m quite uncomfortable with because I don’t want to sound like I’m favouring one over the other. I don’t.

But she is very different to her brother and I don’t know whether those differences are autism and neurotypical based, or boy and girl differences. I don’t even know if she will prove to be neurotypical when her personality unfolds further. I’m not. Daddy isn’t. She does seem happier in her own skin and more sociable than Sam was at the same age. She plays very differently – as in she already has imaginative play, and she copies things she sees all the time which Sam never did. She has a few words now; “fish” or “ish” as it comes out. I’m also pretty sure she says “there,” “more” “mama,” “dada” “grandma” “granddad” She’s even learned a few signs and is always signing for “more”. If you ask her a question she nods emphatically or shakes her head frowning, she understands what you’re saying and communicates her own wishes really, really well. All these things have developed along more neuro-typical time lines.

But that’s not to say she’s smarter than Sam is, they just seem to have different styles. Martha practices and tries things long before she can really do them, with Sam there would seem to be nothing evolving for a long time (but it was all going in), then suddenly he’d do something and master it overnight.

Martha currently isn’t displaying any signs of ASD but that doesn’t mean she’s a walk in the park either; she’s never slept through the night once (Sam had done numerous times at this point), she can throw monumental tantrums when you take something from her that she shouldn’t be playing with, she’s nearly always attempting to injure herself climbing or throwing herself off things, she’s always running off (Sam never did). She’s earned the nickname “Trash it Moo” for the sheer speed she can break or wreck something. Sam took to eating so easily and would try anything, Martha some days barely seems to eat anything. It most certainly isn’t a case of “Sam=bad baby, Martha=good baby”

Both Sam and Martha have been very much “only mummy will do!” velcro children. On that score they are very much alike and at this rate I might get to resume my social life by the time I’m in my 50s! I may still have a marriage by then too if I’m lucky.

But back to little miss Moo, she mimics all the time and it is so fascinating seeing your behaviour reflected back at you, yes it certainly makes you question the way you do things. I never felt like a role model before and for the first time in my life I need to think carefully about the example I’m setting and whether it’s the one I want to set. Do my actions align with my ideology?

She loves exploring the world and it’s been great showing her new places, introducing her to new things. She delights in things in a way that is just magical to share. Just recently she’s started dancing and loves music putting on the radio, she practically dived out of my arms to hit the dance floor when we put on a CD last week (and narrowly escaped hitting the dance floor head first in the process).

She’s surprisingly girly; she’s obsessed with shoes and always proffering her dainty little feet out to try them on, pretends to put make up on, loves putting handbags over her shoulder and parading around with them. Where does that come from? It’s so comical!

She’s also my little helper. If Sam needs the toilet she’ll automatically grab the toilet roll and try to wipe his bum, or grab a beaker and hold it in front of his winkie (he doesn’t sit on the toilet so you have to do this if he needs a wee and poo at the same time). She often empties out her washing basket and throws the clothes down the stairs (which is what we do when we’re sorting out a load of washing), if I’m dusting or wiping something up she’ll get a duster or wipe and do the same, she tries to help me bath Sam and feed the cats. She’s so funny.

And she adores her big brother, there is no doubt about that. We went to pick Sam up from school together last week and as soon as she saw him she squealed in delight, in fact they both did. They walked out of the school yard holding hands and my heart melted. It’s perhaps the most wonderful thing of all seeing them together, seeing their own relationship unfold and blossom. The next generation.

A few weeks ago I went to visit my grandparent’s grave. I haven’t been in ages, certainly not since Martha was born and I wanted to introduce her. I told Sam it was a park and as he played with Martha thankfully he didn’t quiz me. But as we left I glanced back at my Nannan and Granddad’s grave, imagining my Nannan standing there waving her hankie at us the way she used to from her door every Saturday when we visited. Then I looked across at my two children walking hand in hand giggling to each other, and in my head I appealed to heaven for them to look down now, look at these little people they never got to meet. My Granddad, a man of extremely few words, who spent hours and hours listening to the radio waiting for them to play “Hey Little Hen” so he could record it, it was their song, a man who worried about who would look after my mum when he was gone, who never learned to read or write because of some mysterious illness as a child that meant he missed a lot of school and that led the family to move out of the busy town centre and into quieter suburbs… I’m sure he’d understand now more than anyone how I feel about Sam.

But look how the family has changed, it’s all about these two now. It’s not me and John running around together, the centre of attention, it’s Sam and Martha, and Katie and Chloe. It’s a different world now. Their world. And that makes me both sad and happy at the same time.

Catching Up Part One: The Boy

It is now September 2015. The “baby” is now a toddler, a 15 month old walking, signing, dancing, saying a few words and a few more ‘nearly’ words, toddler. She’s a little bobby dazzler as my granddad would no doubt say. Sam is about to turn 5 and has just started school. He’s now an inquisitive, imaginative, cheeky and loving little boy. And soooo tall! He’s the best little boy in the whole world. No kidding.

I haven’t written in a while, but I’ve made the decision to make this blog private and make it my online diary, then gone are the questions of how much of my families private lives I want to share, what I want to share of myself. I need to write, it’s my therapy. But the lives of my children are their own and they have a right to privacy. So decision made.

So where are we at now? Let’s start with Sam: he’s started school a few weeks ago, just mornings so far - the teachers are keen to help him settle in slowly and gently, causing as few upsets as possible – for which I am immensely grateful. When he started nursery every time he came home he would meltdown, stripping off his clothes, screaming uncontrollably, inconsolably. He’d also do the same when he woke in the middle of the night. I didn’t understand anything about autism at the time, but it did set off alarm bells that something was amiss. He’s now on week 3 at school, and although I’m braced for meltdowns (they happened again when Martha was born, so they tend to go hand in hand with big life changes) so far we’ve only had one in the middle of the night, and it was nowhere near the magnitude of the nursery ones.

So far so good. Last week when I picked him up his teacher told me they’re amazed by him (following on from his nursery report which called him a superstar, saying how proud the teachers were of how far he’s come). The nursery had loaned the school one of his previous teachers to help him settle in, but by the end of week one he didn’t need her anymore, he’d made the transition much more quickly than they had planned for. They were also impressed by how much he loves pretend play (unusual in their experience of ASC) and by how chatty he was with them … He has exceeded their expectations. They’re now working on introducing him to the dining room in preparation in him staying for lunch, that will be the biggest obstacle in my opinion, then slowly we’ll build up to the full day… It’s going well, there’ll inevitably be bumps in the road but we’re working on easing him in gradually.

 

As much as he’s amazed his teachers, Sam amazes me too. When he got the diagnosis last year I was so afraid of the future – I knew very little of autism and I didn’t know what it meant for him; would he end up in an institution? Would he be like a child for the rest of his life, dependent on me for everything, would he turn violent? Would his life be one of misery? No friends, no love… What would happen to him when I died? I was so scared for him, and so scared I wasn’t strong enough to be the mum he needed and deserved, I honestly wanted to jump under a bus. But obviously that’s out of the question with two young children. And I know now my image of what autism is didn’t match reality, I was ignorant.

Now after reading many, many books, talking to experts, attending workshops and conferences, talking to other mums with ASD kids… (recognising I’m on the spectrum too and most of my family and many of my friends are more neuro-diverse than neuro-typical)…All that I thought autism was has pretty much gone out of the window and far from being something new to me, I know I’ve been living with it all my life.

In the last 12 months my world has been turned upside down.

So now, well I worry a lot less about his future. You see I know his autism doesn’t mean he’ll never do something. It just means he does it in his own time. It might not be when other kids his age do and at times that may inconvenience society and school systems as a whole because they prefer everyone to be predictably the same (yawn!), but I don’t care about those things. With patient persistence and gentle encouragement, understanding of his current hurdles, well there is nothing this boy cannot do and cannot be.

Yes we have our challenges; right now he steadfastly refuses to go on single decker buses, I’d love to take him on trains but he’ll not set foot on one, our phone has been switched off for months and he often won’t go in a room once he spots a telephone. I want to listen to lots of different music – he wants to listen to the same song over and over and over. He won’t use public toilets. He won’t wear clothes with labels in and it’s a fight to get him into anything but jogging bottoms. He hasn’t had his hair washed in a year because for him it’s a form of child abuse (but it looks fine right now so I’m not pushing him), I find myself wishing we could sedate him to get his hair cut, and his toe nails… Sharing… oh my god we have some dramas around sharing when other kids are around, and with Martha too… sharing gives me headaches. But I can see he is trying to share, trying to take turns, he just finds it really hard right now… He won’t sleep in his own bed and my husband has been relegated to a different bedroom because neither child will sleep anywhere but with me. That needs rectifying. Seriously.

But then there are the obstacles that have been and gone… The first time we took him swimming it took half the session to lure him into the pool, half an hour of crying and protesting by the pool side, now swimming is one of his favourite things. Previously he wouldn’t go into a cubicle to get changed but that doesn’t bother him now. He’ll now actually sit on the toilet seat to use the toilet – hurrah! He didn’t like going in unfamiliar places previously, and ok this is still an issue, but we went on holiday a few weeks ago and every café, restaurant, tourist attraction etc. was unfamiliar and he didn’t batt an eyelid – even at the ridiculously busy Sea Life centre which I felt certain would cause him an issue.

The boy who didn’t utter a single word until he was nearly three now talks as well as other kids his age. I was told it was hard to teach these kids how to ask questions and the concept of “why”. But now he constantly asks “why?” about everything; “because why?” Autistic kids struggle with imaginative play they told me, before the diagnosis we were constantly being asked about his non-existent imaginative play. For a long time there was none, then very little. This seemed to concern everyone. But this summer his imagination has really taken off, he’s always pretending something or other and is so much fun to play with. He’s affectionate, funny, clever, determined. He makes me proud every day and I feel truly blessed to be his mother. He’s come so far.

There’ll obviously be new challenges as he grows, but it’s worth remembering there are things we were battling a year ago that seemed insurmountable, now we barely remember what they were.

 

As of the other main autism trait in our lives; the restricted, special interests. I must say I don’t worry too much about these. He loves to watch trains, but that’s fine, we’ll end each trip into town with a sit down snack in the railway station watching trains, the promise of which keeps him on the straight and narrow while we’re shopping. When he’s doing something he loves he understandably wants to stay far longer than we do, but we’ve found 5 minute warnings work well for us, along with using an outside authority as a reason we can’t stay any longer (this seems odd to me, but it was professional advice and he accepts the word “no” coming from an outside authority instead of us), and we often lure him away from one favourite thing with the promise of something else he loves; “Let’s go catch the bus, you can sit upstairs and pretend to drive it!” Trips into town are reasonably stress free now. Just so long as the bus company don’t send a single decker… These things don’t always work; he would have spent the entire holiday in Scarborough standing by the carousel just watching it if we’d let him, and we endured many “walks of shame” along the seafront practically dragging our wild child along between us. Yeh that got pretty stressful. But by and large, his special interests are cool with us. I guess I’ve always had “special interests” too, so I don’t see it as a big deal – except when the pursuit of his special interests stops me doing mine!

I get so confused by the whole ASD thing, I don’t know which aspects of his behaviour are ASD and which aren’t, what’s “normal” and what isn’t. Back in the late 70s and 80s technically speaking I was also an ASD kid growing up with an autistic mother, so how do I know what’s meant to be normal behaviour? Who gets to decide? All kids seem pretty strange to me, all people seem pretty strange. All kids have challenges, all kids drive their parents insane, refusing to share, wanting to do weird things, watching the same DVD over and over again...

He’s doing just fine. He is just fine as he is. Rather than autistic I prefer to think of us as not quite so neurotypical. Yes the autism label helps sometimes, our current school situation being the primary example of how, but it’s not who he is, it’s just a bit of him and I don’t even know for sure which bit!

Sometimes I call myself vegetarian. I’m not. I eat fish too. But if I’m going to someone’s house for a meal it’s just easier to use the label “vegetarian”. People have heard of it, I don’t really have to explain myself. If I say I’m pescetarian for starters not everyone has heard of it so I have to explain what it is, which usually includes me having to explain why I think it’s ok to eat fish and not meat, justifying that I think it’s ok to eat meat too if you like it, I just don’t, so please, go ahead, though preferably free range and humanely killed, but I’m not judging you…! And actually I only like a few types of fish so it starts getting really complicated.

“So I’ll cook lobster then, or prawns…”

“Er no, I don’t really like lobster or prawns, I don’t really like my food to watch me…”

It’s easier for everyone involved if I just call myself vegetarian. But no, I’m not really vegetarian. And he’s not really autistic either. We’re complicated like that. Tell me who isn’t?