Posted in autism

An autistic mouse.

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.

Posted in autism, school

Education

Carrying on from the #send30daychallenge that’s taking me weeks not days! So day 19.

Education.

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.

Posted in autism

The days I hate autism

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.

Posted in autism

I wish you knew

Continuing on my #send30daychallenge day 25

I wish you knew.

I wish you knew I try my best.

I do eventually get to the point I’ll scream I’ll shout, and I have sat you down and walked away, but I always come back calmer and ready to try again.

I wish you knew that I do appreciate you even though I never say it!

I wish you knew that as much as some days I can’t wait for the day to end, I really don’t want it to! I don’t want you getting older and growing up!

I wish you knew how grateful I am to you, I know how hard you work everyday.

I wish you knew how hard it was, how hard it still is and how hard it’s going to be.

I wish you knew I do worry, I do stress about what you can’t do right now. What will you be able to do in the future.

I wish you knew how much I think of the future the what ifs the do I do this or that.

I wish you knew how proud I am of you, of how much you’ve grown and how much you’ll continue to grow I’ll always still be proud of you.

I wish you knew how much I’ve fought for you and how much I’ll continue to fight for you, you may get married and have

kids one day and I’ll still fight for you!

I wish you knew that when I take you places it’s you I think of, I’m thinking in the future it has to help if you know lots of places.

I wish you knew not everything in life is easy, it’s not all a walk in the park, there will be struggles, there will be tears, there will be tempers and tantrum, there will be meltdowns but there will also be lots of laughs and love along the way.

I wish you knew how much I just sit watching you, observing you with a smile on my face.

I wish you knew you made me into the person I am today.

Posted in autism

A day in the life.

Again I’m all over the place on the send 30 day challenge. I will get there! Day 18.

A day in our life.

Today we’ve been up since 2am, last night I had mates over we sat and laughed in the last bit of bank holiday sun. Normally I don’t have people over, my house is a constant mess, but I’ve learnt to look away. It’s messy, it’s lived in, I don’t have gone off food everywhere piles of dirty dishes etc, it’s just not a show house. Far from it.

So when my I’ll call them guests left at 10.30 I went to bed. I was fast asleep by 11.15. At 2am Z was up. Ran straight into the spare room with his iPad. We’ve just had work done so all flooring is up upstairs everything is louder. At 2.45 the husband went into the spare bed with Z. By 3 am I’m hungry, thirsty and needing a wee. By the time I get ready to go back to bed, it’s take the iPad back off Z, as he’s got it on loud, far too loud for even the husband to snore through. 5.15 Z is finally snoring, I can now go back to sleep. They both are in the spare room.

6.45 husbands work alarm is going off. An hour an half I’ve been sleeping. I’m sure I dozed back off until 7.30 when Z came bounding in.

I come around, Z’s already tipping stuff out, I can hear daisy, goofy, Micky, that’s the tsum tsums over the landing. Add some pringles to the mix too.

I need coffee.

Ok I need more coffee.

Now I need food.

This could be the amount of vodka I consumed last night but I need more coffee. I’m tired. I start my day tired.

I’ve left the pooch out, Z’s in the garden too.

Tipped out are now the toot toot vehicles and the ducks.

I need food!

Give Z some milk, do him toast and cook myself food.

9am the electrician comes to finish off .

Run upstairs to pick the tsum tsums up, and apologise for the crumbs of Pringles.

Now fight Z to get him dressed. As fast as I put clothes on him he’s stripping back off.

10.15 meet the girls at soft play. It’s easier to get him out. My house stays cleaner. I now need sugar!

Home for 1.30.

Husband has picked up the toot toots and ducks.

I do Z sandwiches for dinner, I cook myself diner. I sit at the stairs, I’m not being attacked today, I’m tired.

Let Z stay out in the garden, whilst I put the cleaner over the Pringle crumbs.

I’m still tired!

Run a bath and cook Z tea, why I bother ‘coz he’s not going to eat it. He’ll scream for crisps and as tired as I am today he’ll eat crisps the sausage rolls will go in the recycling.

Keep Z in the bath long enough for husband to eat his tea without being attacked.

Z refuses to eat his tea!

Fight to get him up to bed.

The box of Tsum tsums have been tipped over again.

Were early today it’s around 8.15 and he’s sleeping. Meaning I’m not seeing 9.

The toys have been picked up from the garden.

I’m in my pjs. I’m ready for bed. I’d say to get a good nights sleep to do it all again tomorrow.

This has been the last 6 weeks, who decided to call it holidays don’t know what a holiday is ! This hasn’t been a holiday this has been a test of strength! Roll on school!

#send30daychallange

Posted in autism

Today you’ve struggled. 

Today has been hard. 

Today you’ve struggled. 

The holidays have finally gotten to you, week one you were good, week two you were good, week three you attacked three children. Week four you attacked one child and it all got too much. 

The lack of school, the change in routine, no school and for two weeks dad was home. Then dad goes to work he comes home and little by little we’ve changed upstairs. The spare room was changed about, you accepted it. Your room was changed you cried, you cried some more when you seen our room go the same as yours. You attempted to cover each roomin toys, tsum tsums, books, numbers, letters and toot toot cars. We’ve shouted at you, how many times we’ve picked everything up you’ve tipped them out once more in a different room. 

Last night you didn’t sleep very well, this morning you wasn’t happy waking up. We stopped you tipping the numbers and letters down the stairs before the electrician came. Instead you threw them and spread them everywhere. I shouted. You screamed, dad shouted. You were carried to the car kicking and screaming. 

This was all before 8am. 

Today everything finally got to you. 

I got you out, away from the noise, you enjoyed chips and nachos and came home a happier person. I knew something wasn’t right, I was waiting. You had the giggles, you were being silly. 

Those toot toots wouldn’t line up. You were getting angry, so off they went upstairs one by one iPad in hand. But no electric upstairs means no internet. You didn’t know that. So all these small little things broke you. 

I put pjs on you. I could say that was the start, but I know being on week four was the start. 

You tried getting out the front door, locked, you ran to the back locked, you climbed the washing machine tried pulling off the microwave, I shouted for your safety. You tried attacking the floor, had the toaster, attempted the front door again. I grabbed you kicking and screaming up the stairs. I needed the bed, I needed you safe not to hurt yourself. You grabbed everything, you kicked everything, how I didn’t drop you I don’t know. You dragged your bed away from the wall, you knocked over drawers, you kicked, you screamed and you came out with many random words, words that have meaning to you when you’re singing tonight they were all jumbled. I lay you down as safe as I could for ten minutes. It felt much longer for me I can’t imagine how long it felt for you. Your little body kicking, hitting, squirming. 

I persevered and tickled your arms, your back and wiped away tears. Some my own. 

I got your iPad you were too exhausted to do anything. 

An hour later I’m surprised you were still awake you came down you took crisps and went back to bed, iPad in hand. Not long after you are sleeping, snoring away with not a care in the world. 


Today you struggled. 

Tomorrow is a new day, it’s going to be hard, it’s going to be the same as today. This is the new routine for a few weeks. You’ll be fine. Well get through it! 

Posted in autism

Autism, life two years later.

I remember two years ago when I wrote this, we’ve come so far in two years in so many ways but still feels the same in others.  When I read back on last years update again as much as I know we’ve gone forward it still feels like where we were two years ago! 

Of course we still have the sleeping or lack of, we do start our day really early and end it much later than I would like! We still have the fussy eating and endless nappies to change! 

This last year I’ve really watched Z come on. From words, yes he can’t have that conversation with me yet, but with lots of new words hopefully in time he’ll be able to answer a yes and no question. His understanding is much better, he still won’t follow commands or get anything for me! 

In some places we’re closer to two years ago in respect to what he likes, he’s gone back to the toys he was lining up and watching what he used to watch on tv. ( currently back to Winnie the Pooh!) Maybe it’s something that will always happen, maybe he’ll always go back to things he knows and will find a different use for them. His toot toot cars used to be lined up, then he didn’t bother with them, they sing and he didn’t like that. Now they still get lined up but they also get put on a track, hopefully that’s a start of imaginative play. If he has an animal he’ll try to feed it telling it to ‘eat’. 

I’ve spent this last year watching him try to figure out where he is in the big world, and he’s not found that out yet he’s only four, has anyone? This big world that causes him stress, it confuses him. Things keep changing people eat and things are noisy. 

I’ve watched him grow, I’ve watched him learn how to be around other children in small spaces and not run away, I’ve watched him watching others and try to join in what ever game they were playing, I’ve watched him laugh, cry, and attack others. I’ve watched him iniatate conversation, and get people to do what he wants. I’ve watched him bond with teachers and laugh with them, possibly love them.  I’ve watched him attempt things like a Christmas concert and places I’d never thought he would, like rides at Drayton manor. I’ve watched my small little guy grow up autism hasn’t stopped this. 

Like I said I’ve watched him attack people, I’ve watched him struggle, I’ve watched him in pain and haven’t been able to do a thing about it, just add to that pain by pinning him down for bloods and x-rays. I’ve watched him cry and haven’t known the reason or been able to help. I’ve watched him struggle. Autism is the reason for this. 

In the last two years I in a person I think have changed, more so in the last year. I may never find out where we actually fit in, but I’m having fun looking.  Without autism we’d be on a completely different path, different people and a different outlook on life. There would be people who are big parts of my life right now not even seen, I wouldn’t even know about never mind laugh with. Autism is I’m guessing always going to be hard, I know I’m on a life long journey but with Z showing me the way I’m sure we’ll all be fine! I’m prepared for the laughing, the cries, the meltdowns and no sleep! 

I’m actually excited for school, too see them work with him with his words who knows where we’ll be next year? Maybe I’ll have the answers to my questions, maybe I won’t be changing nappies what ever happens I know I’ll always have my little guy, autism and all.

Posted in autism

Who or what makes a child? 

When I see the progress in Z I’m filled with a sense of accomplishment, not being big headed but a lot of people tell me I’m a good parent, but that’s not all down to me.

First off if I was a single parent I’d be way in over my head, and quite possibly a alcoholic! I don’t ask for help, I feel that being an ivf baby I wanted him there fore he’s my responsibility, the same way if I ever defrosted the others, again I’d want them why should I ask others to watch them?! Having the husband home I can just head out if that’s shopping or for coffee I can do it. I’m not dumping Z on anyone. He’s spending time with his dad! My sister don’t live local, so really the only family he knows are my parents and my nan. He knows his other nan but wouldn’t stay with her, she really wouldn’t know how to handle him. 

If it wasn’t for my parents I wouldn’t be able to go out with the husband if I needed too! So say weddings they’ll have Z at theirs so I’m not on a time limit to get back for the babysitter. If any thing happened to us I know he’s happy at my parents, he’s used to staying there. Maybe this is why I may need to get someone in for respite, just another person who he will trust incase me and my parents all need to be someplace the same time. What with dad then being in work where would Z go? 

They are a big part of Z’s life, I’m lucky he his a grandparents to make memories with the same as I did. 

There are people who’s helped Z become who he is at 4 years of age too. Other than my mates, J and E being big roles here everyone just accepts Z, accepts he’s different and that’s good. We have the Health visitor who provided us with portage, who showed Z how to get ready for school. How to sit and finish an activity. How to engage with another person. How to play.                                                                         We had the staff at crèche who helped him to learn what was going to become of his life for the next few years at school! Other children, sharing, learning how to play.                       We had his teachers that’s been with him the last two years, the ones that had taught him the skills he currently has, how to copy being a huge one.  How to stay safe in the pool, learn to tolerate people eating around him and to follow commands.  I’m sure he he does a lot more in school than I’ll ever know parents evening is only a ten minute session.                                  

Then we have other parents going through the same as myself. Who go out on day trips, who meet at soft play and just get it. Get how difficult it can be. Laugh at each other, hand the cocktails out when they are needed! 

These are the people who’s helped Z till now and there’ll be many more! More recently it’s been B and B, accompanying me on days out, making Z look easy and making me laugh.  Oh if you can’t laugh at someone else who’s laughing at themselves you need someone like B and B they will make you laugh! As wrong as it may sound B helps Z with boundaries when he’s attempting to attack him I’m screaming like a loony and B is just taken it all in his stride, there’s no crying and he goes back for more, which isn’t a good thing. But with them both being that little bit more rough and B being a year older than Z I don’t worry as much as I would if he went to attack E as she’s still a lot smaller than him. Like the other day when B wouldn’t move, so with mams permission I picked him up to put him in the car, Z had patiently waited , B was fuming with me moving him and tried attacking me mams shouting at him and before we know it Z is half out of the seat for B by the hair and I’m shouting at Z B has left me alone and me and Mam are laughing. Like I say if we don’t laugh can you imagine the looks we got that day? Or any day to be fair! It’s always easier to laugh it out with someone else that’s going through it. 

They do play nice too!

When you have a child with any additional needs it really is an eye opener, you join groups to chat to people then you realise how lucky you really are, in regards to things like his health. You learn that there’s so many things the professionals don’t tell you! They don’t tell you oh autism, they are likely to bolt, to smear, to never sleep, to never talk, to never listen, to be able to climb and escape anything,  to always want their own way and that’s some of them! Like I say I feel so lucky with Z, he’s quite easy going compared to others we bother with! In our little school group we have runners and climbers and smear loving ones! That’s when I think I’d be quitting, that I don’t think I could deal with! 

So just because I’m Z’s Mam I’m not the only one who’s made Z into the loving, clever number loving guy he is, that’s down to everyone who’s spent time with him and worked alongside him these last four years. 

Posted in autism

August. 

Well hello, can’t believe we’re into the eighth month already, as I say every year but it’s flying. In two months I’ll have a five year old. Wow. 

So week two of the holidays is over, heading into week three. All we’ve had is rain, rain and guess what more rain. What’s the point in planning anything when the rain just gets in the way. 

Dad has been off for two weeks and we’ve been no where really, can you really count the bay and for lunch a fun day out?We’ve  achieved nothing well other than two tidy bedrooms, can’t class Z’s as it’s covered in Tsum tsum and books that then had to be put back into a mess to take the flooring up. 

This week Z’s speech had seen a massive progress, we’ve had lots of new words, he’ll attempt to sing songs, baa baa black sheep, head shoulders and three in a bed! Actually quite cute. Today I’ve had open jelly, next we’ll work on please! His counting has come on and can understand most of the numbers, he’s counted independently to thirty and fifty I have heard him say numbers sixty plus! 

The progress he’s making is amazing, he’s already a different child to the one that finished school two weeks ago. I can’t wait to see how they work with him come September! 

Posted in additional needs, autism

Disabled children are not wanted. 

That’s the reality. 

Why would you want that child who looks the same as yours but who screeches and flaps in excitement, the child who don’t speak who just plays on his own, to join in or even be in the same place as your precious little two year old? 

I get the tuts, when Z sees that two year old as another object to climb over. I see the looks you give him when he’s running around oblivious to your looks and tuts. He’s oblivious I’m not. 

What about those older children who have other disabilities, the ones who look different, oh you don’t want them either. You look, you stare, why should that twelve year old be in soft play, the place for toddlers, the place for children. The answer is simple, because they are children. 

There is no where for our children, we’re not wanted at soft play, were not wanted at the park, because he doesn’t understand why he has to wait his turn, or why he can’t go on the swing if someone else is on it. Oh there you go, 6-8 have a few hours for disabled people only. How would all the other children like it if they were not wanted till 6pm once a month. Then we’ll put no toilets in either because we’ll I can’t change my sons nappy at your establishment there’s only changing places at my hyperthetical place. One where ‘normal’ people are not welcome, one where ‘normal’ people couldn’t use the toilet. Imagine that? Oh I’d be taken all the way to the dry cleaners for human rights. The right to be able to go someone and use the toilet. So why is it so different for disabled children? 

There’s nothing out there. There’s no after school club, there’s nothing during the holidays. Why can’t my son go to the free two weeks swimming sessions? Why? Because he’ll need a 1:1 no one will fund that. So why can’t there be a session for disabled only children for one hour every day? Why can’t my son go to a sports play group? Again, ‘coz he’ll need a 1:1. 

My son will grow up, he will be twelve one day, then he’ll still not be wanted because he’ll still be different. Mentally he may still be the age to want to go and enjoy soft play, but no we can’t let a twelve year old come and play, how insane is that! The era of keeping disabled people locked up has long gone! But there’s nothing for them in the community. They are treated differently to other children. 

When did parents become so judgemental? Just because you can’t see that Z has a disability, ok, look at him for long enough you’ll see he’s ‘different’, you’ll see him stim, keep looking at him, you may see how loving he is too. 

I’m glad he’s oblivious to everything, I hope that will stay with him! Oh to be that free, not a care in the world, how amazing would that feel?