About six weeks ago we had to pull all the flooring up upstairs in order to have the house re wired. Six weeks later the only floor that been relaid is my bedroom floor. I’d say that’s because I saved the wood and spent a the day putting it back down. Next up we had to take all the tiles up to start the kitchen work, I went to choose a kitchen, we’re walking on bare floor front door to kitchen including bathroom. That’s without an empty kitchen, all cupboards are empty, and we’re still none the wiser when they’ll start. Trying to do any work with Z about is asking for trouble. He won’t let you do anything, the minute he sees the hammer he attempts to take it off you and Bang about! During the half term plan was to get Z’s room sorted. Was hoping to put some carpet down, thick underlay and carpet try to re-inforce the floor. Then the spare room. The toilet needs doing too. Then add doors to the equation for upstairs. In theory the kitchen would have been completed by now. I would have fixed the bathroom sink that Z had pulled loose in the holidays in a meltdown trying to escape out the window, and we would have put blinds up on our room, we did have curtains again until Z pulled them down. The blinds in both his room and the spare room within a few hours of being up he’d already snapped the wood part inside. Now we have to put a new ceiling up, Z’s need to jump and run about upstairs have cracked the living room ceiling. Mentioning this on my page, it looks to be a common problem. Autism and a nice house don’t go. My house has never been tidy, I’m the first to admit I’ll do the washing and dump the clothes on the stairs. Or I’ll let all the dishes pile up. But they are simple jobs, the jobs Z is giving us are big jobs, you need time, tools and money. It’s never ending! If I had a never ending supply of money I’d do Z’s room, I’d put a nice thick carpet down, a nice thick door , one that could take a slamming and not get stuck! Then I’d start and finish the toilet, paint the wall and put new flooring there. As for the spare room….. we’ll if I had all the money I’d get someone to do that for me!So if anyone want to paint, lay floor, do any tiling, if anyone wants a house renovation project I have the house for you!
Five, where did the last five years go?
I look at you and can still see that teeny tiny under 5lbs baby I carefully brought home from the hospital.
Now your my three stone baby elephant.
Look how far we’ve come in five years. We’ve gone through a lot and I’d like to say come out the other end better than when we went in!
Yes somedays I wish life was different don’t we all? I wish you could talk and tell me what was up, that would be my main wish, but we’re learning, it maybe slow but it’s slow and steady.
Some days I wish we could do what a ‘normal’ family could do, but define normal. Would we be able to get away with being up to our knees in the sea in September if we were ‘normal?!
This last year you really have come on so much, I could go back and look at last years post and read the same, but you have. You’ve learnt loads. How to copy, jump, to say lots of words, to tell us when you’re sad.
You are always laughing and smiling and I wouldn’t have you any other way.
Some days I could take you and dump you on the first person who would have you, but I’d come right and get you as I know I’d miss you.
You make me want to tear my hair out somedays but I just watch your every move other days ( ok I have to watch you don’t come through my ceiling or try to climb out the window or drink from the toilet!)
Wonder what we’ll achieve in the next year? I’m guessing loads more with that cheeky little smile and the little attitude to go with it. You’ll keep everyone on their toes and keep getting everyone you meet to fall in love with you and your crazy little ways!
So happy fifth birthday my crazy little guy!
After discussing this over breakfast this week I thought I’ll write this as I’ve never actually told my story and if course it’s a huge part of all our lives.
I’ve never hidden the fact Z is an ivf baby.
Before having Z of course I read, I researched, I looked at all ivf options, I was prepared.
But mentally are you ever prepared?
You go through tests, very invasive tests at that! To have to be at a healthy bmi, no smoking and no drinking. You can prepare your body, you can take vitamins, eat healthy, exercise and take the folic acid. But mentally will you be prepared?
The emotional part of ivf is hard. You read success stories, you see ivf babies and you get excited. Then you read and you see the heartache, the failed attempts, the ones that didn’t make it or the miscarriages after.
That part you don’t think of, you get blown away with maybe excitement do you dare to be excited? The what if it don’t work just sitting on the edge. But you go through with it anyways.
I done it all alone, I didn’t tell anyone, other than the hubby of course. Possibly if I didn’t need to have the time off I wouldn’t have told anyone! I would have Just gone into labour, oh by the way here’s Z!
I often ask myself why I never told anyone to start, honestly there isn’t an answer. It’s my business. No one else’s. There’s also the whole I was raised a catholic it’s forbidden what would my Nan say?! Yup my Nan the one that still active in the church, I’d heard many conversations that scientists shouldn’t play god how would she react?
So we had all the tests, was told I didn’t meet the criteria I needed to loose around half a stone. That was my mission, wedding was arranged and that’s when I then told family, why the wedding was being brought forward. I was going for ivf.
The appointments, the scans, the injections, I remember the first night, the needle in my shaking hand. I couldn’t do it! No I had to do it. I did it! Little bruises over my belly, looking like a little pin cushion. More appointments, more scans. Then the next round of meds. Of course I had to be the one to have the allergic reaction so more appointments and more scans.
This is when I was told it would be cancelled, I was producing too many follicles on each ovary, it was too dangerous, I had ohss. To go home, wait for a call but be prepared that was it for a few weeks until my body calmed down.
That drive home, the deflated feeling, all this work for nothing feeling.
The call, come down straight away, we’re doing egg collection tomorrow. Tomorrow not three days away, tomorrow.
The nerves I felt that day, I bit every nail down, I wanted to cry, looking back I was terrified. How can you show these drs your so scared you can’t. You do as they say, you agree that’s their job this isn’t my territory.
18, that’s how many eggs they collected. I left have drugged up, not knowing anything until they would ring the following day. That night was spent thinking how many survived? Did any survive.
The following morning when your sat waiting for a call, it could be any time. Will you be the first person they call? Will it go in alphabetical order surname begins with a C that’s gotta be pretty close to the front right?! Again nerves.
11 that’s how many made it. 11. 1 didn’t fertilise, 6 didn’t make it past the twelve hours. Now was the next waiting game. Because there were so many, we were having a day 5 transfer, waiting for blastocyst stage. The 11 embryos would be checked on day 3, if there were only a few left they’d ring and I’d have to go down, if I heard nothing I was to go on day 5.
Day 3, no phone call, when is too late to ring? When do they check? No phone call good news right? How can those 5 days be so long.
Day 5, I couldn’t bite those nails any more there went any. I remember being called into the room, the dr explaining what would happen. They didn’t know how many survived until they went to look. Again more waiting. Did any survive.
6 that’s how many made it. 6 embryos, I was advised to transfer 1, after ohss my body may not cope with 2, safety reasons have 1. That’s what the dr said that’s what I done, it’s their job they know what they are doing. If I had gone on day 3 it wouldn’t have been Z it would have been a different embryo, one that didn’t make it to day 5, Z on day 3 was the weakest link, he wouldn’t even have been considered, yet on day 5 he was the strongest, the one on day 3 didn’t make it to day 5.
Being led in to that room and seeing the embryo on big screen, that’s my baby. I watched them insert Z on the screen a little flash of lightening and that’s it’s all done! Go home, rest, do what you want you can’t pee it out, and when you stand up it won’t drop out!
Again you then have that 2 week wait. 2week wait is hell.
Of course you know it worked I have Z to tell the tale. I’m a success story. I’m that 1 in 4. I’m lucky.
What happens after though? You have your bundle of joy 9 months later. Everyone says oh time for another.
No not yet, I’m not ready. What I mean is I’m not mentally ready not emotionally ready.
But what do I do with the 2 remaining?
I couldn’t just give them up for adoption, ( donation!) they are Z’s siblings. They could look the spit of him. They were all conceived the same day, to me they are triplets! I couldn’t just hand them over for research either. That’s the part that doesn’t get talked about. I’m lucky I have 2 frozen, I’ve always said when the time comes to defrost it would have to be the 2 I couldn’t chose between them. What happens if I chose 1 it worked financially I’d never afford to go through it all again. I’d be leaving 1 all alone. I couldn’t do that.
How about those people who have lots frozen? People pay just to keep them in storage as they can’t decide what to do.
Do we destroy, give away to research or for donation. It’s hard. To be put in that position.
So ivf is not only mentally challenging to start with it’s always at the back of your thoughts the what ifs.
Ours stay frozen for a few more years I believe, I hope, I’ve not looked into it, I’m not ready to make that decision yet.
When you stumble upon an article that tells you that drugs ease features of autism syndromes in mice.
So one I’m a little confused how the hell do they know if a mouse has autism? Do they line their little bits of sawdust up? Are they picky with their food? How do they even know a mouse has a meltdown? Can you get a non verbal mouse? Does that mouse not squeak? Does that mouse hate to be touched? Oh I know it doesn’t look at you when you’re squeaking at it! Or do they make art with their droppings?
Now I really want to see an autistic mouse, oh I’ll even have one for a pet, surely they don’t sleep they’ll make a great pet companion during the day!
Anyways I’ve kinda gone off on one here, just have visions of this non verbal mouse who don’t look at you …… laughable right!
So this autistic mouse that they are now treating with drugs that do something to the enzymes to regulate protein levels in neurones. But it’s no where near safe to use in humans as even a slightly wrong dosage would produce severe neurological impairment.
They maybe at a very early stage and some would say it’s progress, me no.
I still say autism is evolution, give it a few more years everyone will have autism, everyone will be different and everyone will be accepted.
Take the brown hare that gets moved to the poles, eventually that brown hare will learn to adapt, they’ll eventually turn white to be able to live, to not get eaten by predators.
Don’t try to cure autism, learn about it. I think this is how the future generation will be. There will be no more world wars, most people with autism hate noise, as for conflict, I’ve not met a person with autism that’s mean! May have a temper but they really are all lovable. They love their routines, there’ll never be public transport running late again!
Yes living with autism is hard, it’s mentally and physically draining but at the moment it’s new, even though I think it’s been around a lot longer than anyone will give credit for, were all learning to adapt. I know Z and his little friends really are the children of the future. Just because they don’t talk now who’s to say they won’t talk? They don’t even need to talk to communicate we’ve found that out already.
I’m only Z’s Mam I can’t say I don’t want him cured, of course I don’t he’s Z the way he is, but if he said when he was old enough he wanted to be cured then is t that up to him? When you get into autism groups people with autism don’t want a cure that’s who they are. So why are people who don’t have autism still looking for a cure?
Look for a cure for dementia or Parkinson’s something that will help.
This time next week Z’s birthday will kinda be over.
Well until Friday when we take him to Drayton Manor with a few of his friends.
This weekend we took him shopping to see what he wanted for his birthday. Last time we were at toys r us he wanted everything, this time not so much.
We started off in smyths toy store, when he walked the isles having a look. He stopped at some but didn’t choose anything, he eventually stopped on some squeezoos. So he had one and we put the others in the trolley, that was it, he was done.
We stopped by toys r us then, and he wanted Minnie Mouse. If that’s what he wanted along with goofy, he carried them around sitting in an empty trolley as he didn’t fancy anything else!
So this Sunday we’ll celebrate Z’s birthday two days early. He can unwrap his presents play with some balloons and have happy birthday banners up and eat some cake that Nan has made. Yes I swapped his Minnie for a packet of crisps when we got in the car so that’s safely ( hopefully well hidden) upstairs, waiting to be wrapped. I know it’s cruel I let him pick some animals around Asda Let him play with them then packed them up and again swapped with some crisps before getting in the car! As cruel as it is he can’t even ask me where they are!
That way on Tuesday he can take his cake into school and nothing is rushed, we can go to soft play after school like we normally do and even though it’ll be his birthday it was also be another day, the same sort of routine that is normal to him. Nothing to overstimulate him before school, run the risk of running late.
I do have a net, to fill it full of balloons he loves them, I need to go and buy a Micky mouse balloon and pay most probably £10-£15 to blow up the Tsum Tsum balloons I bought for him, unless anyone has a free supply of helium?! But reality is this needs to happen Friday / Saturday. Most probably Friday as Saturday in town is going to be too busy!
I’m quite excited for his birthday week of celebrations. He may get used to having a full week, well unless his birthday falls on a weekend then he’ll only get one day! He’s just lucky this year it’s Tuesday so closer to Sunday, and that he has a day off school Friday so we can go to Drayton Manor.
Carrying on from the #send30daychallenge that’s taking me weeks not days! So day 19.
At first I thought of this one long and hard. I was thinking mainstream with a one to one.
I will admit I’m most probably the teachers worst nightmare parent as I won’t sit back and accept it if I think that it’s not working for Z. He’s my child, I worked hard to get him, and I am his voice.
As much as the idea of mainstream sounded good, give him a go, see how he gets on, he’ll have a one to one he’ll be ok. It was tempting at three years of age, would his differences really stand out? Ok nappies, the inability to listen, to follow basic commands and the need to run. Maybe they would! He’d get away with things because he could, he’d be classed as the naught kid, the one that didn’t listen, the one that couldn’t talk, the baby in nappies. No that wasn’t happening to my son.
Being in a unit and mixed into mainstream I didn’t think was going to work either, so I started the statement of education and Sen school process.
Looking back, of course I was nervous I was terrified. I was sending my baby into a class of people I didn’t know, of children I didn’t know. At least mainstream I knew a few of the children, if anything was happening to Z they’d let me know right? Sen school they would be like Z they wouldn’t have the ability to let me know how his day went same as he couldn’t.
We have our home link book, I think a lot of Sen schools do, my mates who’s children are in mainstream think it’s great. It gets ticked each day as to what he’s done in school, any problems it’s written down and if I have any problems there’s s space for me to write too then the teacher will get back to me. I get to know what Z’s done every day, what he doesn’t eat gets left in his lunchbox so I can see exactly what he’s eaten or not eaten! There’s no asking him what did you do in school and a reply ‘duno’! I can say oh you’ve done x y and z today in school.
Being a smaller class size the teachers really get to know the children, their likes and what sets them off. They work hard everyday. I know they work hard as I know how hard I work! Z Is hard work imagine ten of him in a class, I’d be grey!
They are still preschool / nursery / reception age, still into everything stage, not being able to leave them alone for one minute or they’ll wreck the room! I know Z I can imagine the class those poor staff, if they are all like Z as fast as one is cleaning a kid would be pulling something else out! Crèche work helped me understand how hard that is!
Z’s eduction is met to his needs, he has the iep’s he has to work at what is written in that.
He’s met each target he’s been set so far which I think means he’s being taught something.
He goes into school smiling he comes out smiling, covered in paint and glue and mud, which means he’s played in the yard, he’s painted and he’s glued he’s had fun. He’s been kept safe, he’s been looked after for me to recharge my batteries before I get him back!
I’m lucky that there’s people out there who want to work in Sen schools, if there wasn’t he would be at mainstream and I think struggling. He would be struggling with the noise, the businesses of the school day, he wouldn’t be going swimming or to the park. He would be classed as the naughty kid who don’t listen, or the baby because he don’t speak and is in nappies.
Sen school isn’t for everyone I get that, but for Z education it’s the best choice as a parent I made.
Last night I was lucky * to be invited back to New Theatre Cardiff to see The Ghost’s Touch.
The play was based on a tale by Wilkie Collins, The woman in white. I had never heard of it, surprise there right! But I think maybe I need to give the book a read now.
The stage was set with a layered black curtain and a bench.
It started with just Stephan Rayburn ( Mark Homer) talking to his daughter who’s voice we could only hear. The first twenty minutes confused me, there was no props other than the black curtains and the bench! The lighting played a huge part a lot when they were at Kensington Gardens when it transformed the place in to what looked like trees.
Rayburn met a lady, Mrs Zant, ( Terri Dwyer) she just sort of crept from one end of the stage to the other, quite spookily as the lighting would go off then when it would come on she’d be in a different area making her way to the front.
We only met Rayburn and Mrs Zant, the voice talents we just heard.
Rayburn would be seen talking to his daughter, Lucy Rayburn, ( Millie Henson). He would bend down to chat to her and I was left asking was his daughter dead? The actors used some old English too, the way they spoke you could tell it was from the Victorian era.
I couldn’t make up my mind who was actually the dead ones, one of them had to be dead surely?!
The play kept you watching, wondering, and wanting to know the ending!
During the interval my mate actually googled the play, after I had put my theory out there, she put hers and we could hear whispers of, ‘ I think it’s her’, ‘No, it’s the daughter’, to ‘ It has to be him!’, everyone was speculating. Google didn’t tell her the answer just that others had googled the same thing at the interval!
When the second half started who was right was thrown about again, it could go anyway, and if like me people would be changing their minds!
Until it just clicked, like ‘ahhh so that’s going back to ….’
Then the excitement was oh am I right?!
The actors were really good, considering there were only two of them using no props, other than the bench, a letter and a doll, I was taking it all in. Maybe the basic set helped? There was nothing else for your mind to do but listen to the story.
I really enjoyed the play, it was a very short one at 1 hour and 45 minutes. Which was good or I would have gone crazy wanting to know who was right!
The Ghosts Touch is at New Theatre Cardiff Tuesday 3rd October- Thursday 5th October so get your tickets here quickly!
* I was gifted tickets to review the play all opinions are my own.
Are the nights like tonight when at 4.30 I’ve had no sleep.
I’m tired I’ve got a headache and I have work tomorrow. After not actually getting any sleep tonight and having tea at 4,30 I’m now starving. I have an alarm set at 7 and now I’m so over tired I don’t even know if I’ll even get to sleep. I’m debating getting up but I know that by 5 Z will go back to sleep 2 hours have to be better than none? Right?!
I’ve lost all patience at 4 am where I’ve shouted. To see Z’s terrified face shocked me, and I didn’t want him going to sleep with that as his last memory of me. But I still shouted, I’m not proud but tiredness makes me shout. He gets silly, wound up when he’s tired. His climbing and jumping is bad enough when he’s not tired. But when he’s tired and he’s throwing himself into his bed it gets too much. That’s when accidents happen, he’s ran dived in his ed and caught his head, luckily it’s not like last time where he caught his eye and has the small scare to show for it.
It’s not the tiredness like a newborn stage when you haven’t got to rush about can leave them lay to have a coffee etc not Z can’t leave him alone. When we’re running on lack of sleep it’s the silly things like leaving the kitchen door Unlocked then we have washing powder everywhere or the bathroom door unlocked and we have a small flood and toothpaste squirted everywhere. It’s the fact that he’s into everything, climbing everything, just last week he was on the wardrobe trying to jump onto the bed. Constant following, no time to turn off mentally never mind physically.
What happens when he runs us into the ground? Who will look after him then? I suppose when you read research and it says that parents of children with additional needs, ( autism is a big one) are often sick, have no time for partners then end up single, it has to be from exhaustion.
Constant trying to tidy up after a mini tornado is draining in itself, never mind on no sleep. Tomorrow I won’t feel like mopping the floor, but I have to that sticky patch from maybe cake ain’t going to clean itself. Or put the cleaner around ‘coz someone got the washing powder again and cave put it on when he’s here.
Then it’s pick up all his toys from every room upstairs for them to be tipped out in a different place.
I understand people say all kids are the same but no he’s nearly 5 at nearly 5 I’d be expecting him to at least pick up after himself, listen after the millionth time not to touch the washing powder, and trust him enough in one room not to attempt to climb out of the window.
So yes tonight or this morning I hate autism I hate the tiredness it brings, I hate the fact at 4.40 my son is screaming crying ‘coz I shouted at him nearly an hour ago, I hate the fact he’s tired and can’t get to sleep. Then I hate it that in 2.5 hours I have to wake him for work for school. I hate the fact that it turns me into a raging loony.
I know hates a strong word but tonight I do. It doesn’t mean for one second I hate Z, I don’t. It’s the same as someone hating cancer, tonight I hate autism.