The Trouble With Asking For Help 

Earlier this year,  I discovered a special needs parents support group that meets fortnightly not too far from where I live. The first week in was busy, the second is was ill. The third I forgot about it because I suspect I was having a good day. The following time, I went to bed the night before determined that this time, I would definitely go. 

I didn’t go. Because I was having a bad day. It’s the ultimate catch 22. When you don’t need help, you don’t see the point of going, you don’t go because to go would be a fraud. When you do need help, you can’t go, because all your energy is focused on getting through the day. And going somewhere new, where you don’t know anybody, and you suspect that maybe you don’t belong anyway, it’s tricky on a bad day. So on bad day you need to have gone on the good days, but on good days you don’t want to go and think about how bad the days get. 

Maybe I am just not made for support groups. 

Maybe I was over thinking it. 

Trouble is, nobody talks about this stuff. You hear the stories about the tired mums of kids at the “bottom” end of the spectrum. You hear stories about how brilliantly proud parents are of their “high-functioning” autism kids, how the kids are heroes. Sometimes it feels like a competition, or some weird classification system. Just how bad are your kid’s needs? Because only really bad needs count for this narrative.  Your child looks normal. She needs to go in the inspirational hero group. But sorry, she can’t actually pass as normal (whatever that means). She doesn’t make you giddy with glee and give greater meaning to your every breath. Try the other group. Although no, you won’t fit there either. Hmm.  

Nobody talks about the kids in between – the ones with words (but not enough), who can cope at school  (but only just, and then the weekend is recovery time not family time), who can spot the tiniest difference but not realise when someone is angry. Nobody talks about how you can’t go out but you can’t stay in and the meltdowns that are always a moment away and leave us all feeling punch drunk, dizzy and weary and heartbroken again.  

Nobody talks about it,  which means when I want to ask for help, either I’m wrong, or I’m weak. Or maybe,  I’m right, and nobody wants to talk about it. 

A Visit To The Soft Play

As I write this, I am sitting in a soft play place pretending to know where Little Person is. It’s a sunny day so most sensible people are out in the park or on the beach or doing any number of free things.

But Little Person is rarely up for doing something spontaneous, and somehow she realised that we were near the soft play place. And sometimes, there’s no good reason to say no.

Of course, the spontaneity of it means I didn’t come prepared. Nothing to occupy my hands or my mind apart from my phone and my other favourite hobby – people watching.  

There’s the lady reading her “Heat” magazine, periodically pausing to type manically on her phone. There’s a  coffee mug, half empty water bottle, empty crisp packet on the table. And now, a red faced daughter looking and smiling and scowling. 

There’s a  dad or three. With bottles of pop and vastly overpriced plates of food and children either super smartly dressed or in whatever didn’t need to be washed this morning.  

There’s the mummy clubs huddled in the corners. With coffee cups and juice bottles and children nowhere to be  seen. And gesticulating hands and sternly nodding faces. Outrage needs to be expressed, endorsed, carefully cultivated.  

And unimpressed young men and women wipe tables, sweep floors, lounge against the entrance to the trampoline enclosure.  Invisible, almost. Invisible enough. 

I am sure I could learn lessons from these observations, extract a meaningful comment about society, and the roles we play. But instead, I watch Little Person: climbing and running and trying,  skirting the loud kids to go down the slide. Hair flying backwards so I see the grin on her face.  And then scrambling, climbing, up and up and up, curls bouncing so they are all I see. And then a hand waves and she’s sliding down again. 

Sometimes I don’t need lessons. 

Sometimes I just need a good day. 

And Then We Got A Dog (Sunday Musings)

Reasons Not To Get A Dog:

1. I am not a dog person. I blame the childhood trauma of picking up very messy giant piles of dog poo.

2. Dogs are expensive. There’s food, and vet bills and bedding and toys.

3. You have to train them. Potty training. Obedience training.  

4. They take up time. There’s walking them and playing with them. 

5. The chew factor. They chew everything. 

6. The poo factor. I mean, my childhood poo trauma was using a shovel. This is using a bag to pick up a fresh warm …. ergh…. 

7. I already have a cat. An anxious cat. 

8. Did I mention I am not a dog person? 
Reasons To Get A Dog

1. Little Person worked very hard to overcome her fear of dogs because she really likes them. 
Conclusion:

We got a dog.  

What is Parenting Autism Really Like? (One parent’s story)

It may have been the begging. Tears in my eyes, pleading for my daughter in front of a less than understanding official, trying to find the words to explain that no, my Little Person would not be able to cope with a half hour queue with all the noise and people and shuffling endlessly along. 

Because she may be brave, and she may be beautiful,  and we may have learned how to get along and get through things, but autism is still autism.  And, like any child with autism,  Little Person finds queues and waiting particularly tricky (because time is a very tricky concept). And so I begged, because sometimes asking nicely doesn’t get the job done. 

This is not life as I planned it. This is not life as I wanted. Sometimes, this is not life I want. And sometimes,  I look at how my life is, how it will be, how it has to be and …. I buy chocolate.  

Parenting autism is different to parenting not autism. It can be beautiful,  but more often than not it’s hard, exhausting, frustrating. And it’s not cool to admit it. It’s not done to say that I love Little Person but. But I wish there was a way to make her understand.  But I wish there was a way to make society understand. 

It’s like Little Person and me, we’re stuck in a little rowing boat in the middle of the ocean, swept along by the current to some unknown destination, at the mercy of winds and weather. No tools except our two little oars. And over there are ships and boats – sailboats, cruise liners,  catamarans, battleships. And yes on the other side there might be people on lifeboats, or little dinghies, and we want to help, but we need so much help ourselves.

And then people look over their safe railings at us and say “But you have two oars. Why don’t you use those? ” 

How to Evaluate a New Task Management System 

School holidays mean doing things differently.  It means my standard way of operating – making a mental note of all the things I need to do that day – doesn’t work. Too many things, and too many interruptions. 

For example, I can’t decide I will do this and when I am done I will eat lunch. Because lunch happens when Little Person is hungry. 

So I decided to record all my tasks electronically. Evaluating the success of this move was easy. 

When you find yourself collapsed in a heap on the sofa at the end of a very long day, looking up your task list and thinking “Oh,  I forgot to do that. Again.” Four days in a row. It’s safe to say it doesn’t work. 

It is most likely that by the time I work this one out, Little Person will be back at school and the system will have to adjust again…..

How to do Biscuit Art

Little Person wants to be an artist when she grows up. When asked what kind of art, she replied baking art. Which turned into biscuit art. Which turned into an afternoon activity. (Apologies for photo quality. They are straight off my phone.)

Preparation 

Buy various cake decorating bits and bobs. (We bought little stars,mini smarties and wafer butterflies.  I also bought rainbow shoelace sweets but they didn’t get used.) 

Buy biscuits. Or make them. We bought rich tea biscuits, but only used the round ones. 

Buy icing materials. Icing sugar, food colouring, that sort of thing. We bought the icing writing packs but they can be tricky to work with. 

Setting up

You need to put all your decoratables within easy reach. Make a small bowl of icing (tip: you never need as much water for your icing as you think you do). You might want to split this into various colours.for use as background colours. 

You will need space for each child.to work and a variety of spreading tools. 

The biscuit art itself

Basically, you let the little munchkins lose on the biscuits.  First with their choice of icing background colour. Then they can add their own decorations as they see fit. Little Person gives you an example below. 

Bonus points for a lesson in Internet safety.  And no. I have no idea why it is upside down.  

Here’s some of what we made. 

The patterns were made by pulling at the icing with a toothpick. 

And one more.

 As you can see the possibilities are endless…

Good points

Good for imagination, parallel play, sharing, can be a shared activity across multiple levels of ability. 

Easy to put together and put away. 

Not so good points 

Not.good for food allergies, or when Little Person eats all the leftover icing. Can be tricky when the thing doesn’t work out quite to plan. 

High possibility of mess, if that sort of thing bothers you. 

Overall score: 5/5

We will definitely do this again.  Unless we don’t.  

Summer Outing Review: Glass Painting at the National Glass Centre

I appreciate this is a deviation from my normal blog posts. I am experimenting. Writing the kind of post I would find useful. 

Taking Little Person out on summer holiday adventures has become more tricky over time. She gets more anxious. She needs to know more stuff. So this is a review of a day out that we tried. 

We went to the National Glass Centre in Sunderland. They had advertised drop in sessions to paint either a glass boat or a glass car. The Internet page was very up to date and included a note that the lift was out of order. Not that we needed the lift. The only thing was there was no picture of the entrance so that I could show Little Person a visual cue of what to look for when we arrived. 

Free parking. Yay. A nice ramp down to the entrance.  Also yay. Revolving door entrance. (Scored points with Little Person if not her mother.) 

The glass painting cost £4. We got a little glass shape (Little Person chose a boat) and a selection of pens to colour I with. We had the option to practise the design on a piece of paper and then trace onto the boat. We got to keep the boat but not the pens… 

Plus points: friendly staff who calmed right down and gave really good instructions when I asked. Minus points: quite an echoey room so when it.got busy Little Person found it.difficult to cope.  

There’s also an educational display about glass in Sunderland, dating back to Roman times but it’s not very kid friendly. There’s a gallery, with no extra charge for the current display (I am not sure about other times). I  liked it.  Little Person liked it. The person handing me the piece of paper with all the info gave me a stern message about how fragile the stuff was. Because that’s really going to encourage parents to take their kids to see the art. 

There’s a pretty view of the river and downstairs there is a  restaurant and a shop. We didn’t get down there because the lift was broken. But it looked spacious enough and there were plenty of tables.

Overall, a good activity, well organised.  We would make sure to only go if it’s not busy next time. 

When An Autism Diagnosis Is A Good Thing

The day we got Little Person’s diagnosis, I was a shredded pulp of melted ice cream. I was unsure about what it all meant, guilt ridden for dragging her through all these hoops only to get what? A label that would limit her. A badge to point out all the things she could not do. A future defined by can’t instead of can. It was A Very Bad Thing. And it was all my fault. 

And now, a year later, I am glad of the diagnosis. Because it means we can all put our energy into who Little Person is becoming, instead of banging our heads against a glass wall and thinking there is something wrong with us. Without the diagnosis, either she was an uncooperative fearful brat, or we were bad parents.  With the diagnosis, we have tweaked things and now we look like a normal family. Some days. 

Autism might seem like a big thing, but it’s in the little things that it matters. Parenting autism is a million small moments of remembering that she does not see the world as I see it. And yet her world is no less than mine. 

She has shown me a beauty in the world that I would not have seen without her “tricky brain” as we call it. I have watched her grow, and learn, and try, and overcome. I  have sat in the corner and cried because people are idiots and this is such hard work. I have worked hard to prepare her for things, fully expecting a meltdown, only to have her sail through.  I have been sideswipe by meltdowns so huge it has taken a week to recover. 

Little Person has the kind of autism where it doesn’t look like she has autism. It’s exhausting for her and for me. But knowing that this is what we are dealing with means we can make better decisions now for the future. 

The autism diagnosis does not make things easy. But I think somehow, it makes things easier. Because at the very least,you get to stop pretending you know what you’re doing. 

​A poem for #Somme100 

​A poem for #Somme100
 
Seven Thirty.
Morning of the first.
Guns fall silent.
Boys ready.
Whistles blown.
Over the top they go.
For glory
For honour
For King and for country
Over the top
They go.
 
By days end
Sixty thousand dead & wounded.
By Days end.
 
By battles end
Five months later
Over one million dead, wounded or captured.
Our boys from Blighty & the commonwealth.
 
Gone
Never to return.
Never the same.
 
Somme
The bloody Somme.
A place of no return.
 
By Colin Nicholl
#Somme100

Letter To My Blog

Dearest Blog,

This is not good-bye. I will come back. Less frequently now, and for different reasons.

You helped me to make sense of some very difficult times in my life. Together we have watched dreams die, skated around the edge of depression, and grieved for so many lost opportunities. Together, we remembered what is most important in life, and that it sometimes doesn’t look the way we think it should. You helped me find my voice. You helped me have the courage to use my voice. And so it’s bittersweet that I won’t be around much for a little bit.

Because I am editing the novel, you see. And editing, it’s a different sort of writing. As I look through my first draft, I see so many times when I just wrote it as little blog posts one after the other. The problem is, it doesn’t flow then. So it’s difficult to commit to this kind of writing and that kind of writing. Sometimes you have to make a choice.

But knowing me, I will still pop back from time to time. Something will happen and I will have to write about it. Always does.

But I don’t want to write a blog because I should write a blog. I don’t want to write about marriage (which is hard, but also rewarding), or parenting (which is hard, but also rewarding), or having a special needs child (which is hard, but also rewarding). I don’t need this outlet for my creativity – I knit socks, and crochet blankets, and am even starting to design patterns and teach other people to crochet (never thought that would happen). And I have real live people to talk to, who listen, and accept me. Some of them even believe in me.

So much has changed in a short time, and I have to concentrate on other things for now. But I will be back. Don’t you worry. I will definitely be back.

Rox