Events that shaped me

The other day on Facebook I stumbled across the business page of someone from my school days. There's no particular reason why but I felt really surprised to see she's setting up her own psychotherapy business after gaining 20 years experience working in mental health.

Then I found that ugly little emotion called jealousy creeping in. We were similarly matched for intelligence at school, so why did I barely make it above an admin job and she's flying high? 

It got me down a little. I'm not so far off 40 now and what have actually achieved with my life? 

Then one particularly rough night I found myself awake at 5am, running my life story through my head and thinking of things I haven't thought about in a long time.

I remembered the happy times, I have plenty of great memories. I remembered playing in the field at the back of my house with a tribe of other kids from my street. Remembered how all that fell apart when I became a teenager, how utterly lonely I became, now watching the same kids I grew up with hanging round on the corner of the street from the darkness of my bedroom

My mum suffered with depression and anxiety and was generally unhappy. That made her cruel sometimes, it also made her a target for kids and teenagers to wind up, much to my dismay. At school I was bullied in various ways that I won't bother dredging up again.

In short I had no one. My dad backed my mum up in our fights and my brother was obsessed with his trains. I listened to rock music, drew on my arms with razor blades and lived in a fantasy world.

My ambitions weren't about careers,  they were about finding people who loved me, having friends, having good times. Because for years I was absolutely miserable. 

After college I fell out of society almost altogether. It's hard to find a job with all the social anxieties I now had, and crippling panic attacks had left me depleted. I barely left the house for two years between the ages of 18 and 20. I signed on for benefits for two years. I felt like an utter failure.

But I had A levels under my belt, I'd somehow managed to scrape decent grades despite not being able to revise. So I threw myself in at the deepend and went to university. 

It almost killed me. I found it so hard meeting people. It was one of the hardest things I ever did. But determined not to go back (to what?) I sought help, I got CBT therapy, at uni one girl had taken me under her wing and I confided in her about the cutting. She offered me a room in her shared house (I lived at home for the first year) and although it scared me senseless I accepted.

And that's when things changed. I was 21. There are all sorts of people at university, and with alcohol lessening my shyness, I made close bonds with a few. I found everything I ever wanted. Friends. Love. Good times. I was soooo happy for the first time in a very long time.

I kept on living like a student even after university finished. I didn't want things to change or the era to end. My social life was what I lived for, friends, rock clubs, gigs, pubs, weekends away with friends or my boyfriend. That's what made me happy, I always felt like I was trying to make up for lost time.

For work I tended to find a job I felt reasonably comfortable in and stay there. I wasn't good on self promotion or blowing my own trumpet, I'm still not good at meeting new people, so I just kept my head down and got on with things, as a result I've never climbed high up any career ladders. I watched people higher up, stressed, single, lonely... Yes lonely, and decided I didn't want it. Plus I think shy, retiring types just don't get the recognition we deserve. It's hard to get on in this world without confidence.

Finally, early 30s, I was married and I thought I'd better get a move on with having a family if I ever wanted to be a mother. And thus began the next big chapter of my life.

At the end of my 30s here I am with two children. And though it is hard work, hand on heart I've never been happier, I actually feel reborn and like my life is only just beginning. 

So no I haven't set the world on fire with my career, but I never tried to so of course not. I have actually achieved everything I set out to achieve, which makes me wonder what I should set my sights on next. Maybe I ought to dream bigger? 

Work!

In approximately 9 weeks I go back to work. I have very mixed feelings: I'm looking forward to seeing my old work mates again; I'm daunted by the actual work since I haven't used that part of my brain in such a long time; and I'm dreading leaving my baby and seeing less of my son again.

Family life is so overwhelming at the moment and I don't know how I can squeeze work back into the picture. But we can't afford to have me stay at home so it's back to work I go.

But what of breastfeeding? I'm planning to continue but obviously it's going to have to be on a more part time basis and I'm not sure how it's going to work. I'm trying to get her to take a bottle or a sippy cup but so far without success. So much expressed milk has ended up going down the drain, which is disheartening when it takes so long to produce in the first place.

And though I obviously know formula is fine and certainly isn't poison, I've put up such a fight to breastfeed I feel reluctant to give her it.

What it all boils down to is that it feels wrong going back to work for me. I'm not ready to stop feeding my baby. I want to be with her, I want to be here to care for my son. I feel like my place right now is in the home.

This weeks wins

- he had a conversation on the phone with his daddy, it was small but he's never done this before

- his conversations are more back and forth, not as much repeating himself. He seems to repeat himself more now if he's anxious and it's still hard to get him to talk about something that isn't of his choosing, but massive improvement 

- he was using a plastic cup and pretending it was a telephone and pretending to talk to various people on it. Proper imaginative play!

- he was also making his trains Thomas and Rosie take turns in the lift on his toy garage. Turn taking! I was very impressed. He also took turns playing with his cousins with only a little nudging from me.

- he very nearly took his own jumper off by himself, he couldn't do this before. He also can take his own shoes off now

- he actually went to the toilet by himself. A first! He doesn't actually need any help going but he won't go by himself usually. Brilliant step forward. Also goes to the toilet at other peoples houses now which was previously a problem. Just need to get him to use public toilets now and we're cooking on gas!

- at his nannans birthday party as soon as the cake came out and the candles were lit, he sang happy birthday to her all on his own, with no prompting, and in tune. It was the cutest thing ever!

I'm so, so proud of my little guy! 

Searching for perspective

My feelings keep trying to lie to me. They want me to feel like my future dreams for my son have been dashed. But in truth I never had a clear picture of what I wanted him to be, so nothing has been destroyed there. 

They want me to blame everything bad on autism. But in truth life is crazy right now because of many things, not least a little baby...

They try to tell me this autism means we'll be isolated and tied to the house, that the meltdowns will make it near impossible to go anywhere. Truth is my lack of driving and having a car is a much bigger obstacle to those things. Sure his anxieties make things trickier. It's hard when you've dragged the entire family across town in the cold only to have him meltdown in front of the museum and refuse to go in. But with patience and understanding I can usually win him over. But having our own car would be the game changer in this situation and not the autism.

My heart wants me to believe every tantrum and naughtiness is autism, and not normal 4 year old behaviour, making every bad mood seem sinister and frightening, rather than allowing me to write it off as boys being boys and instantly forgotten...

Perspective has gone out of the window lately.

Writing it all out

My only plan right now is to write all the chaos out of my head, work it out, let it go, then get on with things.

I was thinking before how when the subject of autism was first raised I looked on Wikipedia to educate myself and came away distraught. It felt like my sons future was doomed, little prospect of getting a job, vast probability of being bullied, no chance of finding love, the only hope of leaving home being by moving into an institution. I was terrified.

Then I spoke to people and I heard so many different stories, my brother in law works for university and there is an ASD society there (so there can't be so few who go to university if they have their own society), my neighbours are teachers who told me of various pupils they've known over the years with ASD, including one about to go to university now to train as a doctor. I heard of many with spouses and children, I read the blogs of others with as varied lives as the neurotypical. In fact I love reading the blogs of people on the spectrum right now, their words are the ones I'm listening to the most as I try to understand my son and learn how best to help him. They are my greatest source of hope and wisdom.

But I feel so confused. Why are so many sources so bleak? Is it so hopeless? Well obviously not. But  I guess I'm scared that the positive stories I hear about are actually rare cases, that for each of them there are another 50 who are isolated and alone and shunned. 

I obviously am not writing my son off, he might be one of those who goes to university, has a job and marries. He might not. Even if he didn't have this he might not do any of those things anyway. I keep trying to be logical. No one knows what the future hold for their children, autistic or not...

Recent wins

It's time I reminded myself that things aren't actually as bad as they feel right now. I do in fact have things to be grateful for:

- a few months ago my son would come home from nursery and instantly have a mammoth meltdown, he'd scream, take all his clothes off and be unreachable for a good hour or so. This hasn't happened now in months.

- he used to also have middle of the night meltdowns, also involving screaming, taking clothes off. But once again this hasn't happened in weeks. 

- he is developing more empathy suddenly. When I cried the other night he reached out to comfort me, then when I felt poorly he gave me a cuddle to "make mummy happy again."

- we went into our local cafe the other day and he didn't make a fuss about having to sit somewhere different or people leaving the door open 

- his imaginative play is really coming on. He likes to turn out the room lights now and pretend to drive around with his car lights on, he pretends his car is slipping on ice, he pretends to be an eagle... He pretends, he copies things he sees grown ups doing. He never did these things before.

- his talking abilities have taken another leap. He actually tells me some of the things he's done at nursery, though I wish it wasn't who he's pushed over that day!! But his vocabulary keeps on improving and he's able to tell me a little bit about how he's feeling, he tells me if he's poorly, sad, if something hurts. Again he could never do this before.

- he's shouting orders at people a little less and asking more politely

A year ago this boy was so baby like. I'm so proud! 

Putting one foot in front of the other

Actually all I want to do right now is curl up in bed and cry. But I can't. I have a baby to take care of and a little boy to keep a brave face on for. I have no choice but the muddled through, scrambled up this hill and get on with things the best I can.

You see I know deep down inside that I'll be ok, that I can accept this, that we will all be just fine. But I have a lot to work through to get there, before i can be comfortable with this being our life now. I'm not there yet, but I will be one day and in the meantime I don't want my son to suffer in anyway because I'm feeling weak.

So I'm trying to do the old fake it until you make it right now. I'll just keep putting one foot in front of the other, I'll keep putting make up on and going to playgroups, picking my little boy up from nursery and making polite small talk with other mums. I don't want my little boy to feel like something is wrong and I certainly don't want him to think he's what's wrong.

I've started trying to look after myself better, I don't feel like it but I'm doing it anyway. I even took myself off for a massage at the weekend. I'm trying to carve out a little time in all this craziness to recharge my own batteries a little. I'm just so bloody tired all the time. I wish my baby would sleep!

Getting it all out

I need to have a little moan. There's so much going round in my head since this diagnosis I'm finding it hard to see clearly.

I know eventually I'll be ok, it's just that life has been thrown off course in a different direction than I expected and I need to adjust. I barely know anything about this new place we're in so it's really unsettling. 

I'm trying to learn all I can, but there's a mountain of information out there to get through and I don't know what I make of it all yet. 

Some of it is so hopeless sounding it makes me want to curl up and cease to exist, other things give me hope for a better outcome, but not without a fight. 

That's when I worry I'm not strong enough. When I bash my head against my own limitations. I'm an introvert, I lack social skills. Am I strong enough to take on the world on his behalf? 

 I was really badly bullied at school, I've always been almost phobic of him going through the same and everything I read tells me that's almost inevitable. My heart keeps breaking again and again. 

I wish I could put aside my own issues and hang ups so I could... What? I'm not sure. So it would hurt less, so I could be more objective about things, think more clearly. I don't know.

Right now it's frightening, daunting, I don't fully know what I'm dealing with, I don't understand it. I'm really scared. They wouldn't tell me where on the spectrum they thought he was, mild? Moderate? Only that he wasn't core, so does that mean aspergers? What? I feel like I don't really know what I'm dealing with here.

I'm reading and reading and reading and I'm far from without hope. I'm just overwhelmed by it all. 

My life feels too chaotic. I keep needing to remind myself though that much of that is because we have a baby - a baby who doesn't sleep, who doesn't like putting down, who screams when I leave the room. It's because I'm still adjusting to having two children, I feel a bit pathetic that six months in that's still the case, but it's true. 

It has very little to do with autism. 

It's not that so called normal four year old boys are a walk in the park. We once went to a play centre with my sons older male cousin. When Taters wet himself I didn't have any spare trousers because it was a rare occurrence. The other boy's mum did and leant us them. The other little boy was so jealous he decided to shit his own pants. I kid you not. 

This is why I feel so confused!

What's his autism and what isn't? 

What happens next?

Yesterday I messaged a Facebook friend. In real life she is my husband's cousin's best friend, we've met a few times but had the same due date for our babies a few years back so became Facebook friends... 

I messaged her because I knew her eldest son was diagnosed with Aspergers a few years back and I just wanted to know how this thing works now.

Turns out it's as I feared. After the diagnosis that's pretty much it. Her son goes for six month reviews and they did the workshops after the diagnosis but now they're pretty much on their own.

What?

Everything I read stresses the urgency for early diagnosis, citing treatment when they're young as being vitally important for improving the outcome possibilities. 

I don't get it? 

No wonder they were so vague when I asked "what happens next?"

In the dark

Since the diagnosis nothing seems to be happening. We've had the report through that essentially minutes everything we said at the diagnosis, and we're on another waiting list for some workshop that helps us deal with tantrums, that kind of thing... but I don't really understand what happens now. Will there be therapy sessions, what? I don't understand how this works.

There's talk of this team and that team getting involved, but who, when and how I don't understand? It made no more sense to me the second time I asked.

I still feel like I don't entirely understand the diagnosis, just what is ASD? I get that it's a spectrum disorder but it's so wide it could mean almost anything right now. I don't know whether my son is just different, or disabled, whether he'll grow up to be quirky or need lifelong care, will he marry and have children or never have any friends? 

I don't know where on the spectrum he is, they wouldn't answer me that, they were very reluctant to say anything at all about outcome. When I said I'd read that early intervention is key they said "he's four, so we've got him fairly early"

But then they aren't doing anything...

Some days I feel like I've accepted this, but then I realise I've just got my head in the sand. Some days I feel sick with worry and everything feels bleak, other days I just think, "so what, he's different, that's all, haven't I always been unconventional?"

Some days we don't come up against any obstacles and everything is good. Then we'll try and take him somewhere new, do something I think he'll like, and he'll stand screaming with his hands over his ears while I try to stay calm and reassure him, knowing people are staring. Some will get it, some smile and say their kid does the same, some will judge, even your own friends and family which hurts. I handle it better than I once did, but some days it happens repeatedly and it's like we can't do anything or go anywhere. That's when I feel dark.

I always thought when I had kids we'd have so much fun together, I'd take them to amazing places, make wonderful memories for them. But going to new places is so hard and so stressful.

Do I need to redefine my vision of the perfect childhood to one that will make him happy, even if it's different from mine? Probably. Yes. I do.

Facebook hurts too, I know I know, it's peoples highlights and not the whole truth, but I find it hard to see the pictures of other children playing with their friends, at birthday parties, doing all these exciting things, alongside such statements as "Ollie couldn't wait to get back to nursery to see his little friends, he's little mr popular, I'm so proud!" My son has formed a few connections now at nursery but he keeps telling me how he wants to push them over and make them cry. Every time his teachers tell me that it makes me want to cry.

But then he'll surprise me, he'll actually sit at a different table in the cafe when his favourite table is occupied, without making any kind of scene. And he doesn't get hysterical when the cafe door is left open the way he usually does.

That's when I start thinking maybe it's all a phase that will go away... Mine will be the kid that's cured and we'll all laugh about this one day. Then I feel guilty for the people that doesn't happen to. Then I realise I'm one of them now. 

I don't know I'm ready to be defined as an autism parent yet. Where do I stand on self advocacy versus cure? I've learned almost a new language recently, stimming. There's a word that was never in my vocabulary before.

The other night I burst into tears over something and nothing, but my son reached out and touch my arm and said, "Want to make mummy happy." Yes I melted. I didn't think autistic kids did things like that. I really don't know very much.

Whatever he is though, he's so wonderful. He's funny, affectionate, ever so sweet. I guess no ones future is set in stone, autistic or not, there are no guarantees. I will come to terms with this.