Posted in autism

Halloween and phantomloos 

 Halloween 

Lots of parties for children, I have to turn them all down. Ok, it maybe a little busy for Z but I’m sure he would love the lights, disco lights would help him join in. Be like a ‘normal’ four year old. 

Do you know why on of the reasons I have to turn party’s for ?  Toilets. 

Yes, toilets. Where do I change Z? As a baby I could put him in his pram and do a quick change discreetly if they didn’t have any baby change facilities. When they they do have nappy changing facilities it’s the pull down type with a weight limit, so for an average two and a half year old. Z is four. Where do I change him? If I have to it’s always on the floor. Yes the FLOOR how disgusting is that. Would you be happy with laying on a toilet floor? If the floor is bad I sit on the floor and change him on my lap, I don’t particularly like sitting on the floor of a toilet but my son has needs, he can’t stay in a dirty nappy because there’s no where to change him. 

Lots more places are becoming ‘autism’ aware so where’s the changing facilities? Just something simple as a bench would make life much easier. It would mean that I wouldn’t have to lay Z on the floor where goodness knows what is brewing. If I don’t put Z on the floor it means I sit on the floor and change him on my lap, it’s not the best but I have no choice. He’s entitled to a clean nappy, a dry nappy the same as we are entitled to go to the toilet when we need too. So why are there no where to change him? 


Does this look secure enough to hold a four year old? 

Of course I’m not the only one in this position, any one think of the people who need hoists? Who don’t get the choice of laying down on the floor?  Now instead of the drop down if there was a bench there it would be accessible for many more people. 

Would you be happy laying on the floor in a public toilet? Please sign and share this petition 

https://www.change.org/p/end-degrading-disabled-toilet-facilities-now

Posted in autism

Hidden costs to autism. 

Wasn’t sure if I should write this post, never mind publish it. I thought I can’t be the only one who has been in this posistion before .

To most of you, yes I know I don’t have to justify how I spend my money, the people who really need to read this won’t because the truth is even if I sent them this way, they don’t care.

Like most parents who look after a child with additional needs, we claim dla for Z, this doesn’t make us ‘rich’ far from it. Z isn’t some sort of money making thing, he isn’t worth a lot to us because of money, he’s worth a lot to us because he is Z. He’s our child, someone we wanted long before he arrived. He’s not even a ‘mistake’ not saying all mistakes are unwanted! But he was wanted, we had to go through a lot to be given a chance, same as everyone else who’s gone through ivf. 
It’s been asked is my new car because of the money we get for Z, the answer no, it’s coz my husband goes out to work 6am till 2-45pm, and back every other week 6-8pm. Him going out to work five days a week are the reasons why we can do things, I still have my 2 part time jobs too. No, he’s not on loads of money and we’re not rich. I needed a new car to keep Z’s buggy in, bigger he’s getting and a little picanto just wasn’t doing it so for his safety it was time for a new car.

Dvla allows me to take Z places that maybe other wise I wouldn’t try, it would be money I couldn’t really justify spending if he couldn’t cope, dvla allows me to do this, to try new things. It also allows me to get Z the things he needs, I’m not saying the things are expensive like numbers letters and playdoh, but other things are, iPad chargers are one thing! Like other parents we go through so many iPad chargers, because Z doesn’t understand. Hearing from people with older children on the spectrum they still don’t understand. Then the iPad screen cover , ok it can last a while but we can go through a few every so weeks, this is still cheaper than a new screen.                

Nappies and wipes, are other things that you wouldn’t still be expecting to buy at four, vests with poppers being another. He needs these for the winter. Have you seen the price on these? Your looking at roughly £8 for one. Same goes for all in ones, if you want the feet in them £15. You could say you don’t need them, but if Z had a dirty nappy at night and we didn’t know, because he can’t tell us, where and what do you think would happen? It would be smeared everywhere, so I’ll pay the £15 for poo free walls! 

Z is spoilt I’ll admit it he was before the autism, when he just had a speech delay we would buy things to try to encourage him to talk. There’s others out there who are just as spoilt! 

Certain foods he’ll only eat, there was a time that all he would eat would be McDonald’s chips. It’s not as simple of saying well if you didn’t take him he would eat something else, no he wouldn’t he would have starved. 

It allows us as a family to try new places, like when we went to the farm a few weeks back, we lasted 2.5 hours that’s not a long time but that’s all Z could manage, and 2.5 hours is a long time for him. 

Sensory toys are stupidly expensive, the same as every thing if it’s aimed at a disability, because the sellers know us parents will pay it if our children need it. 


The money I claim goes on Z, we were always out before he stated school, swimming lessons he was having, alongside drum lessons he’s still having. Ok it also helps keep me in coffee! Of course when your up from 3am a lot of the time you can get through 4-5 coffees before work. I call it an essential, something I need to function. Sometimes it may also buy me a bottle of vodka! Know that few weeks of 3 am wake ups, meltdowns from hell and not going to bed till 10, then a glass of vodka with your mate is actually needed! 

Would I trade my dla for a 4 year old who could talk, wear pants, sleep through the night and not get up at 3am, or even went back to sleep because they understood that it was still the middle of the night and not time to get up. For a 4 year old we could take anywhere an not worry how long we would be out, not have to worry if we needed to take the buggy, the iPad the headphones, a change of clothes, nappies leak, basically were still carrying a baby changing bag, just without the bottles. There are others out there like me who still carry the bottles. * Would we give up all the money for this, I’m sure everyone would say yes. For a ‘normal’ 4 year old. 

Or rather would you trade your child who ok will have a few tantrums because all children do. Have to remember all what I’ve said above when going out, worrying about where you would change your child’s nappy because those baby changing facilities are aimed at baby’s. All this on maybe 2-3 hours sleep if your lucky. Then find somewhere where you can go out for a family meal but your always on the timer because you don’t know how long the iPad charge has left, or if that screaming child is going to set your child into sensory over load. Them are to scared to go away because your not sure how the change of routine will affect the next weeks sleep?  Think of the things you’ve done with your child this past few weeks, would this be still be  possible for Z? 
* There’s most probably loads more ‘things’ I’ve forgotten because they are just normal to me now. 

Posted in autism

The most scariest 5-6 minutes of my life. 

It’s now a full day after folly farm and I am calm enough to write about loosing Z. 

I mentioned  it here, we were all in the big indoor play area. Z and E were running about, Luckily It was much quieter than the last time, but still busy enough to loose him. It’s very high, a few levels to run about and multiply exits. So I went first, then it was the husbands turn, they were going up and down the slide. 


When he came to say I can’t find Z, I didn’t panic, ok, it’s a huge room but a few times you think, I’ve lost him coz you take your eyes off him for seconds. Ask because there was around six of us looking for him it didn’t seem as bad. Two minutes later I knew he wasn’t in that room, I did panic. My original thought was penguins. He loves those penguins and wanted in the water. 

When my husband said, we were going down the slide and he just ran that way, I thought he was coming back to you. That’s when I thought ok, he’s had enough he’s headed to the car park, check the fair. My sister ran that way, I ran to the penguins. My gut said he was in the fair, but I had to check the water first. The fair was busy, if he tried getting on a ride someone would know he was missing. If I hadn’t checked the penguins and he was at the bottom of the water that would have been minutes lost. 

When you get out of the room you can see the penguins there was no one there. So I ran, I checked the top, those penguins didn’t seem so cute at this time. The fear was building up of him at the bottom of the water. Even though you can kind of see the bottom I couldn’t just leave I had to look through the glass. 

On my way back I heard my sister shout, was expecting is he there, instead I had I’ve got him. 

Relief. 

He had made his way to the fair, and when my sister said I won’t tell you how fair, I’m guessing it was more towards the out. 

Z won’t wear the bracelet around his arm to say my phone number. His other jacket I can attach it through the zip, with *autism* written on it and my number. I have never lost him before so why would we today when there were more of us? 

He wasn’t lost, he knew where he was going and what he wanted. But what if he had made his way out? If that lady hadn’t been keeping an eye on him? Yes he may go with someone I don’t know. 

He hasn’t got that awareness that other four year olds have got, if they can’t see Mam they’ll shout or cry, panic will set in, not for Z. If someone picked him up, and tried to ask him his name, he wouldn’t reply, he wouldn’t be able to say my name, or where the last place he had come from. That’s the scariest part of all. The knowing he would be out there, maybe taken with the staff to try and find us and he wouldn’t know he was misssing. 

My husband wouldn’t leave him out of his site, he was on his back straight away. It was a lesson we all learned, he’s fast, very fast. Think I’m going to look into a gps tracker! If it has numbers on it he may keep it on? 

Posted in autism, birthday

Four

Today Z is four. 

Four. I can’t believe how fast the last four years have gone. 

This time four years ago I was being stitched up after having Z by emergency section. Our first picture of him was taken at around twelve, two hours after he was brought into the world crying! 


From day one he had that way that he’d make you fall in love with him! 

At four I’d expect an excited little boy, one that would rip open presents, play with them and be excited about having a party or going out for the day. I don’t. It’s not just another day to Z, it’s one that overwhelms him. I gave him three wrapped presents. He tried to unwrap them, he gave them a good go, after I had opened itbto show him there was something inside, but he wasn’t really interested. He wanted to play with his numbers, they don’t change. 

When you have a baby you don’t expect at four to still have a toddler. With Z being so small born we seemed to have a baby for a long time, he was still very small walking!  Then he became a toddler, and we still have our toddler. Some one who is still in nappies, someone that don’t talk, someone that sees no danger and someone who still doesn’t sleep through the night a lot of nights. We still have to change him, dress him, make sure he is safe. Watch over him like you would an eighteen month old. 

It’s not something you think of when you decide to have a baby, in what happens if he don’t do these things, it’s all aimed at milestones. But Z does things in his own way, in his own time. How many four year olds can spell ‘Alligator’? 


So for every little milestone according to the ‘books’ that Z doesn’t hit or has already missed look at what he has hit that are not in those books, well at least for many years! 

So here’s to the next year, the next four years. It’s exciting to see where he’ll be at in those years, when I look back and see what his achievements will be. 

I know one thing that I have an amazing little boy,one that he’s taught me how to care for him without speech, how to understand him without him talking, how to know what he wants by his actions. Like when he runs out of a park I know he’s had enough and we’re heading back to the car. He can’t tell me he’s had enough he just shows me. 

Posted in autism

My questions to my nearly 4 year old! 

This time last year I wrote one to my nearly three year old, can read that one here

This year I’ve seen so many positive improvements. He continues to amaze me. 

He’s not your usual typical nearly four year old. Only now he’s noticing things like the birds in the sky, the leaves falling to the ground and places. He is taking more notice of where we go. 

So I know your still not talking, your trying very hard to make sounds and those are coming on lovely. After school I should be asking what have you done, have you enjoyed yourself, not just relying on your smiles and the state of your clothes! 

I’m guessing that when they say people have photographic memories that’s you. You see things and remember them, how often do you have to see that image? Is it just the once? Can you see the 7 times table once and remember it? Can you see what comes next straight away? Is it just there in black and white? 

Why do you love numbers? Is it because there’s always orders to them? Same as the alphabet, you’ll put the letters in order of the alphabet then start again with the same letters just somewhere else. Then go back to your numbers. 

Sleep, why can’t you sleep? Can you not switch off? Are you afraid of the dark? Are the numbers and letters just dancing around your head when you lay down? 

I’m still asking the same of food? Why won’t you try new foods? Is it the smell? 

Why is it funny when someone copies what you say, or try to say? Umm is a big one that’s amusing. You giggle like a mad man! Is it the sound or the facial expression of me saying umm? 

I hope next year some of these you maybe even able to answer. Even if it’s just one word answer. 

Posted in autism

A little of what Z can do!

I’ve not done a what Z can do post in a while. 

Of course when out and about people can see what he can not do, he can’t be left alone or he will wander, he can’t come out of nappies  as he’s still not toilet trained, the obvious he can’t talk. People would see the sensory over load as acting out, being naughty. But that’s his way of getting away from where he’s at. He’ll run to the door to say it’s time to go. People can see he don’t listen to you if you talk to him, they can see can walk so why is he still sitting in a trolley or pram. Again coz he’ll run! 

Anyway what Z can do. That I know he can do. 

He can do his numbers, he can do these well. He can order to 100 in 1’s 10’s, 20′, 11’s he can remember the 17, 18 and 19 orders, 18, 36, 54. He will number 2,4,6,8 and 10. 3,6,9 and 12. Ok,  he’s remembering the order off the app he plays but he can still do it. He can order to 1000 in 100’s 



He can count, he does know the numbers he’s saying and trying very hard to sound them out. 

Letters he knows his letters, he can order A-Z and as with the numbers he tries to sound them out, he knows the letter and sound. He’s starting to spell too. 


He knows how to swim, the basics of how to swim, and with a bit of help in school this will come I’m positive of this, seems he’s the only one in his class that don’t need 1:1 support in the pool. 

I’m pretty confident that he knows his colours. If he can learn numbers and the alphabet of YouTube I’m sure he knows the colours too.

So when you look at Z and see what he can’t do think of what he can do that you can’t see! 

He really is an amazing little guy! 

Posted in friends

When online strangers become good friends. 

You are always told not to talk to strangers. Beware of the people you talk to online, they are not as they seem. 

Then you come to twitter, where striking up a conversation with a stranger is the norm. Through twitter I’ve made many friends. Some I’ve been lucky enough to meet. Yup, actually met them in person and you know what they are fab! Then you have Instagram where you follow their lives in pictures. Not in a stalky kind of way! 

What do I love about my online friends, they are always there! When your bored, they’ll answer. If you need help they’ll answer, and if you need picking up they’ll make you laugh. You can whinge in private knowing that they’ll have your back, not judge you, and offer any kind of help you may need. 

Online we meet different people. We meet people on the same path as ourselves. There’s lots of us who just get it, get what you’re going through. Most of my online friends write blogs, so, again, I always have something to read. Things in common, people to chat to at 3am, because they are online they are from all over the world! I’ve learnt loads from my online friends over the pond, joined in treat swap boxes and seen each other’s children grow. 

There are advantages to having online friends, I read somewhere that ‘strangers are just friends we’ve not met yet’, and I wholeheartedly agree! 

To all my online friends, thank you for being there! 

Posted in A's view of the world, A's view of the world

Ogmore Beach!!

Ogmore

Last week I went to Ogmore as part of my environmental studies.  I walked along the beach collecting different shells from rock pools and threw sticks for lots of dogs.  The weather was nice and hot for a great day out on the long beach.

I also found a mermaids purse in a rock pool, a mermaids purse is a shark egg and is found washed up from the sea.  I am also very excited because I will be making a dog out of the shells I collected.

Macmillan coffee morning

For Macmillan coffee morning I helped my nan to bake three different kinds of cakes, Jam and coconut, Butterfly cakes and cupcakes.  My favourite part of the morning was seeing what cakes people had bought or made to raise money for this great cause.  There was a stall for clothes and household items, cakes and sweets and there was a raffle at the end.

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Posted in Review

Escape reality 

This time last week I was lucky enough to attend escape reality with my family, my mother, uncle and auntie. 

I chose Alcatraz. One of the hardest rooms there. 

I had to put my family’s escaping skills to the test! 

We arrived it took us a while to find the place, we waked past it. When in, we were greeted and taken to the room. The lady went through everything with us, the rules and safety side of it. 

I’m not giving anything away, that’s why there are no photos! 

I’ll just say that we were spilt in the dark! This took us around 50 minutes to get out. With help. We still had lots to do to escape Alcatraz. As we were early we were given a little extra time, I have read that if there’s no one booked in after you the staff are kind enough to give you extra time to see if you can escape, we could have been given the whole night and I think we would still be there! Next time we’ll try an easier one. 

We all really enjoyed ourselves, and are booking to go back. We fancy the look of misery next. 

It was different to what I was expecting, or maybe I don’t know what I was expecting. It’s one of those places that even if we had completed it we would have to go back to try and beat our personal best. I can see it could become quite addicting. 

As I was lucky to be invited, and thank you for having us, I think the prices are very reasonable if you think you can Escape reality I really would recommend it. There’s a good discount for booking online for a group of you too. 

I could see this as fun with a group of friends too, think friends wouldn’t argue as much as family, not that mine argued that much, they were on their best behaviour ! 

It would be nice to go for something to eat, then test out our escaping skills and having a celebratory drink in the bar afterwards, yes we will escape next time. Ideal for a cold wet winters night. I know I’ve mentioned it to a few people and some have already booked. It’s something different to do and I’m looking forward to my next attempt! 

So from all four of us thank you for letting us come and try to escape Alcatraz, we had a great time and a week later we’re still talking about it!  

Posted in autism

24 hours a day 7 days a week 

Autism.
Before Z was born, autism was more of a word. A word I didn’t really understand. Yes understand. It would be that kid got autism, oh ok. 
But what does that mean?
According to the dictionary on google search autism is, ‘a mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts.’ 



To me as a parent autism is much more. 
I wake up with autism, I go to sleep with autism. Autism is now my life 24 hours a day 7 days a week.

Yes, it’s hard, but, I love my son, autism makes him who he is. It’s a part of him, he I believe was born this waay. It didn’t happen from ivf, from having an emergency c section, from drinking alcohol when pregnant, because I didn’t drink, didn’t smoke, I don’t smoke, never smoked, so it’s not that. Not from being obese because I was normal bmi to get ivf. It’s not from the bottle feeding as he had breast milk for the first three months, could it be from under active thyroid? Then surely all kids whose parents have thyroid problems would have autism? See all these it’s your fault, comes down to the mother. Could it be coz dad’s bald? He’s older? He’s tall? It’s never dad’s fault. Oh, until their older then it’s the parenting, you didn’t talk to him enough as a baby, you didn’t socialise him, you weaned him too early, you didn’t do x y and z. I did those things, so maybe I over socialised him? I talked to him so much he never wants to talk ?
It’s never you done every thing correctly it’s not your fault.

He’s pre verbal, he may screech and flap from time to time, he may like his routines, he may through himself on the floor and hate haircuts, but he’s also much more. He’s a fun loving, amazing kid who I think has a heart of gold when you finally get into his little world. A smile that lights up his whole face. He loves numbers and letters, he loves to explore, he loves school, he loves the water, he’s recently just noticed the birds fly over head. Where ever he goes once people get to know him he makes an impression. 

I could watch him all day. He actually fascinates me. To be in his shoes for a few hours. To see how he deals with everything. 

When the days are hard they are hard. The hard days tend to be after the no sleep. Autism and sleep don’t seem to go very well together. 
I’m a lot luckier than others. At least when my son sleeps he sleeps, other days he can be up at 2-3 am and that’s him for the day. I don’t think you get used to the no sleep or the 3 am wake up. 

But the good days are good. To see him run, climb, laugh and flap, with not a care in the world. If I could take one thing from him, it would be don’t worry about what other people think of me. 

Some days I worry, will he ever talk, will he ever come out of nappies, will he ever have friends. He has one friend, and you can already see the bond between them after 18 months, I’d like to think it will always be there. But the reality is it’s doubtful. She will grow up, get friends do what children do. Grow up. 

This scares me. 
What will happen when I’m no longer here? Who will look out for him? He’s an only child, no siblings. 
So yes, autism scares me, but not for those reasons of being different. For people judging him for being different, for not fitting in to what people categorise as normal. Who and what are normal? Scared for the fact he may always be alone. 

I’m already noticing it a lot more lately. I for one am not bothered that he didn’t get a party invite. He’s not either as he don’t know, but one day he may know. He may care. Children who are the same age as him now notice, notice that he’s different that he don’t talk, that he don’t play. He doesn’t notice that children play together. 
I see it happening, drifting away, more so as he’s in full time school. I was warned ages ago that these things will happen for obvious reasons. Did I expect them to happy so soon? To be honest no, I’ve seen that children at two and three are really grown up, not baby like any more they are little people.
Yes people say come here, do this, but what if he can’t cope, then again what if he can and I’m not letting him try. What if he’s fine and I’m just not ready for the stares, the look another naughty child, the judgey parents? Then what people don’t see is yes he can cope, but then it all becomes too much, to much stimulation. To much noise or colour or smells, I don’t know what too much is. He can’t tell me.

I think he’s lucky, I’ve tried most things with him, he has an active social life! I’m lucky nas M allows us to do things, soft play for example when I can sit with my back to him and chat, something I feel I cant do any other time. I’m constantly watching him, for him and for others. I see these kids in the same place as Z, parents in same place as myself. I see these parents discipline their children, say no, take them home for misbehaving. Things you don’t see because obviously we don’t discipline our children! Of course there’s exceptions to this rule, there has to be for sensory overload.
So yes autism is a huge part of my life now, I’m Guessing that means people will drift in and out, they will see what they want to see and I’m ok with that, people are always there for a reason, at that point we won’t know what that reason is. They will all have points to make, they will always be right. But I live with Z, he’s my life as I said 24 hours a day 7 days a week. I am right, I know I’m right!