Need Sleep

It's been quite a while since I last posted a snippet of our lives on here, it's been quite empty in our worlds of late.

The summer holidays upon us, we fell into a routine. Same thing, day in, day out, for much of the last 6 weeks. There have been moments that I've been so far dragged down, I've been sunk to the floor, sobbing, and unable to see how there can possibly be another day on the horizon, where no amount of closing my eyes can stop the tears flowing.  Nights that seem endless, I can go through the motions, and lay my head on those pillows, but sleep will not or cannot find me. I wish it would swallow its' pride, stop, and ask for directions already.

Those have usually been at the end of days that Lily has struggled the most, though who's pushing who lower in those cases I'm not sure. Was I perhaps already low, and she simply picked up on it? That would of course make her feel uneasy, confused, unstable.. perfect recipe for a hard day for us both, and once I've hugged her tight and kissed her goodnight, that floor is welcome and waiting for a jolly good cry. (at which point I tend to get stuck. Mobility is not my friend)

I guess that's why I've not posted in a while. Truth is right now I'm struggling. Struggling, mainly, to convince myself that I exist. We've had overall, a good summer holiday. We've had our own adventures as a family. We've been to the zoo, to the city, the woods, the parks, we've danced in the rain, picked blackberries, had homecooked meals, and even been graced with the presence of dear friends once in a blue moon.

Lily has increasingly shrank more into her own shell. She's been to 3 parties, and barely interacted with those around her at any of them. She speaks, she sings, she dances, but her world will only grudgingly touch another, and briefly. It seemed the more we went out, the further she sank. It hurts me to watch, not knowing how to reach her in there. 

Of course this hasn't been constant, there are moments worlds open, and you get a glimpse. Usually when she wants something.
A friend of hers visited this week.   They watched the Lego Movie, had a bounce on the trampoline. Other than "Big Sammy", "Little Sammy" has managed to get the most reaction from her in the last 6 weeks.

This time next week, Lily will be back at school, facing a new year, a new classroom, in with everyone else for as long as they can manage. I hope she'll do well. She's looking forward to it. And in 9 sleeps, we get to stay in a hotel, and in 10 more sleeps, Lily finally gets to meet "Spiderman's Fends"

I can hear her going in circles in her room right now, talking to them on her poster. Telling them she'll be there soon. Asking them to please not eat her, she wants to be their friend.

So it is, I finally send another snippet out into the void. The joys of trying to raise two minions, one of which is autistic, while mental health inexplicably tethers you. World domination will just have to wait.

At least until I've had a nap, dagnabbit.

Simple Town Trip

Lily and Mummy went into town today. We set out on an adventure to pick up 2 small parcels from the Post Office, and a Hair Wash for Lily. Pretty simple, hey? Short and sweet.


Having randomly stroked a dog on arrival to town, Mummy explained to Lily (again), that we need to ask the owners before we stroke dogs, in case they bite. Lily finally seemed to grasp the concept... in a "challenge accepted" way. Apparently this meant we had to speak to everyone we saw who had a dog, no one with mutt in tow or being towed by mutt escaped the lovely lass.

It was pretty hard to miss my gorgeous girl today. She was the one wearing a bright sun hat, and pink sunglasses.

In the rain.


As for the "just picking up a couple of parcels from the post office" theory... that never works with Mummy. We got a few little bits from the charity shops (Lily even picked out something for Pixie), and had great fun on getting home, unpacking them... and the parcels of course... and a computer...

Mummy also ordered things so she can start up her Second Life music again. Bring on the mixer and microphone...

yep... just the post office.




(also having ordered the toasty cheese sandwich, the cheese was "da wong cheese, Mummy. It all long and melty") (I did tell her!)

Wibble Wobble

"When it come out, Mummy?" (Soon...)
"Is fat a long time?" (probably not...)
"How long is it?" (I don't know...)
"Mummy, LOOK! It coming out?" *poke tooth into odd angle... watch Mummy turn a little green*
"How many sleeps til it come out, Mummy?" (I don't know...)
"Is toof fairy gonna come? Him leaf me chocolate coin?" (It's usually a real coin...)
"Will it hurt?" (no, love...)
"How long it hurt for?" (it won't...)
"It hurt for fee minutes?!?" (are we even in the same conversation?)
"I don't want it to hurt!" (That's good because I already said it won't!)
"I ring Ranny n tell her bout my toof?" (okay...)
*Mummy dials and hands Lily the phone*
"My toof coming out! It gonna hurt fee minute! I don't want it hurt fee minute!!!" *Mummy face palms*
*pause*
"Mummy said so."   (wait... what?!?)

*cue Mummy explaining to granny what was actually said.. *

"LOOK!!!" *poke tooth out again, this time in front of a mirror. Now there's two odd angled teeth to make mummy green with*

"Ranny said it won't hurt" (that's right...)
"Why you tell me it hurt?" (I didn't...)
"Yew did! yew said fee minutes!"

*Lily runs to check mirror and completely ignores Mummy's reply to this..just as well really*

Lily's first wobbly tooth. A whole weekend of fun conversations like this one!

The tooth miraculously disappeared Monday evening, (we think she ate it), Mummy's friends brains work a lot faster than Mummy's. By the time I got through the "oh crap! She's going to freak out about this..." moment and onto the "okay.. lets fix it before it starts.." and just before the "how do I actually fix this?" thoughts they had already told her the tooth fairy must have really needed it quickly!

Luckily the tooth fairy didn't forget to put a dragon pound under her pillow... which she paraded at school today.

She's also been opening her mouth really wide to show everyone her new gap. Yes I mean literally everyone. She doesn't have to know them. It's been great fun watching the reactions of people thinking this bounding. muttering, dribbling (its hard to talk with your mouth open) speedy child is going to bite them.

Are We Nearly There Yet?

It is official. Lily, Pixie, and Mummy have the best friends in the world. Everyone should have friends like these. The type that feel more like a family.. with all its dysfunctional quirks that you wouldn't want to change for the world (I serve up more than my fair share of randomness, too!)

I mentioned in a previous post how Mummy is very very much like Lily. We sometimes do things in reverse. If Lily has enough warning of a change, she can get quite excited about it, and all the craziness explodes into our worlds about 2 weeks after the change has occured (that's her usual settle period, anyway). Mummy, on the other hand, with enough warning, really gets her knickers in a twist. Our current moving house is no exception. There were tears, there were tantrums, there were all nighters and there was no light at the end of the tunnel.

That was just Mummy.

No one was spared the wrath of the stressed Mummy. Family, friends, strangers... I really have been an absolute... personage of Doom. (This really isn't an exaggeration. if I were my friend, I'd have smacked myself!)

They say you can't choose your family, but you can choose your friends, and thank goodness mine have been able to deal with me of late. Without them we wouldn't have made it to the new house. I'd still be surrounded by half packed boxes and drowning in a mountain of stress (half of which is unwarranted but created by my brain as some form of torture)


Lily is very very happy with her new bedroom, the one room in the new house that's sorted! (Though the larder's looking done too, priorities are in order!) We had a tough and emotional time of it yesterday evening,  there was no order to anything, but today she has her bedroom, and she obviously feels secure because *touch wood* she's not got up tonight yet.
Her Marvel Villains and Superheroes poster is "keeping after" her again. Everything has its place. A room she's in control of.

There's no phone line, but there's internet, so she has stampycat youtube to watch.

All in all, Lily's a pretty happy bunny tonight!

Fairies on the Mantlepiece

One of the best things about being a parent, or working with children, or having some childy influence in your world is the magic it brings with it. The raw belief in the simplest things. Santa Claus, the Tooth Fairy, Magic Sock Land (a secret pocket that exists in every washing machine to help us keep our socks odd)... Literally anything is believable, just use the word Magic and you can't go wrong.

Lily has a new phase. Fairies. This is utterly brilliant, partly because it reminds me of when I used to believe in them. I'd climb the trees and look around every leaf, or every flower hoping to catch a glimpse of one. Lily brought home a fairy, it started on her hand, but after a while of walking with her hand stretched out, palm up in front of her I figured it must be aching, and told her the fairy had moved to her shoulder. She got so happy that it came to life for her.

When we arrived home she carefully directed this piece of air onto the mantlepiece "So Phiwip can't get it, Mummy"

This morning on the way to school Lily entrusted Mummy with the magic behind getting fairies. It was the pure, innocent, angelic type of magic. The type that melts hearts worldwide (not in a yucky painful way), and is contagious. Very contagious. This magic has already spread to other children, and they've been giving her more fairies. Our mantlepiece is very very full, it's almost poetic that it can be utterly empty now that we're packing, and full at the same time.

The best part? It's simple magic. Anyone can get a fairy.

In the words of Lily

"You put you hands togefer like dis..."  *assuming prayer hands*
"Dem you shut you eyes.."  *peeks to make sure Mummy's eyes are closed*
"Now, you has to say it 5 times or it no work. 5 times Mummy. 5! You watch I show you how dem do it"

Anyone would think she was praying. Her voice a light whisper because fairies like it better quiet..

"I wish I hab a fairy
 I wish I hab a fairy
 I wish I hab a fairy
 I wish I hab a fairy
 I wish I hab a fairy"

*poof* Spiderman Fairy. Bet Stan Lee didn't see that one coming...

Dagnabbit

Sometimes it crosses my mind that I'm worse than Lily... that I cause the problems..
  (okay.. a lot of the time)

I know just how much she struggles on a day to day basis because I fight the same battles. I get the sensory issues, I'm not that great with loud noises, not to the extent Lily gets affected by them,  but I understand the impact they have on her and why she reacts the way she does.
There was a time I couldn't get her to wear socks because she said they hurt her feet. We're past that now, but for all the times I cursed in my mind when all I was trying to do was keep my lass's feet warm, I didnt step back and compare my own sensory issues to hers at the time. I wish I had, I'd have understood it better sooner. I'm not a big fan of socks either, or gloves. They make my hands/feet tingle and that drives me nuts. When I do wear socks, they have to be odd ones. Why? Because I'm an odd person, I guess.

Lily struggles with changes to her routine, but to her credit it's a short lived hiccup most of the time... that's more than I can say for myself. If plans change for me I re-evaluate everything several times over and every scenario that could be entailed, and I panic. I panic for days (if there's that much warning), and constantly worry, it affects my sleep, and eating habits, suddenly at the slightest things I completely overreact. Anyone that is a friend has the patience of a saint because goodness knows what it must seem like from the outside looking in. (Good grief did that woman just tear the living room apart because she couldn't find a hair tie? What a nutcase!)

Social situations are like a form of torture, unless I've known the people for a while. I tend to end up sitting quietly, running through scripts in my head, playing out conversations before I've had them, thinking of possible replies, and half the time don't actually open my mouth to attempt them. Once I'm comfortable I'll stumble my way through small talk. After years of practice I can blag my way through a conversation now most of the time. Some days it's effortless, others my voice seems to run away...
Lily is just starting out on the social road... and I already see her pulling away from it, much to my despair. Not despair that she's not interacting normally etc, but despair that it's already hard for her, and despite my understanding, I still have no idea how to help her past it.

There are so many ways that me and Lily are so alike. It never hit me until the last time I took her to the pediatrician. It was our first meeting (her other one retired), We hadn't spoken much of me, just the home situation, and Lily's behavior, speech, social, etc. Regular stuff. The appointment lasted about 40 minutes I think, and during that time Lily had very calmly trashed the doctor's office. At the end the doctor asked Granny and Lily to tidy up, and turned to me and said "Did you know you may be autistic?".

That was so many months ago, yet my brain is still playing it over and over, like a lifeline. All those times I felt like I didnt fit, all the pacing back and forth on the verge of tears when someone was a few minutes late, peering out the window every few seconds to see if they were nearly here.. all the defense mechanisms, and things I had to learn the long way around because I just couldnt naturally get to. It's like a puzzle piece clicked into place.

The same puzzle piece that clicks into place every time I see lily dance to her own tune, oblivious to the world around her because she's safe in her own bubble, or go mental because there's a drier in the public toilets.. In fact every situation I see her struggle through, and mentally curse (usually through impatience, I must admit).. then when I have a quiet moment to myself I get lost in my own head and replay it all and realise.. you know what?
I'm the same.

Hmm...

 What shall I regale you with today?

Do I speak of how my amazing lass has finally tried to clean herself up after using the bathroom...?

(cue image of Mummy wading through 4 unraveled toilet rolls with a plunger and many many towels)

How about the heartwarming bond between the Minions of Doom?

(Mummy thought Phillip was screaming in terror/pain. Mummy thought she was going to find him missing a limb..
 They were playing peek-a-boo with the curtain. 
Mummy worries too much.)

Ooh, ooh, the sudden interest she's developed in helping Mummy tidy!

(she wiped down the surfaces and the chairs, and  swept up. Mummy returned later with towels and broom)

(Mummy needs to put towels on the shopping list, we're getting through a lot at the moment, washing machine cant keep up with supply and demand)

No? How about when she helped do the laundry...

(gosh knows how that resulted in a mixture of Bold and cat biscuits through two rooms...)

The new cd for today..

(War of the Worlds.. because it sounds "pretty".. I bet that was totally what they were going for....)


Actually,  how about the moment she didn't know I was watching. A rare secret moment Mummy doesn't know about. She took Phillip's hand and slowly, quietly walked around the livingroom with him. Over and over again, watching him lovingly. He would stumble, and she would patiently help him up and continue, or give him a cuddle until he was ready to try again. Without a word, just teaching him how to walk.

I don't know how often they've been doing this, that was the first I had seen it, but to look at them you'd think it was second nature, that they do that all the time.

This afternoon Phillip walked the furthest he's managed unaided, and Lily was cheering him on, clapping, smiling, and giving him cuddles and kisses.

The joy on both their faces was wonderful.