Posted in autism, party

Hot tub party!

When you hear of autistic children not being invited to parties it’s heart breaking, when it’s you’re own it’s a horrible feeling.

I’ve been lucky with Z there’s only once or twice he’s not been invited, we’ve made 90% of those parties and if he hasn’t coped we’ve left.

Queue hot tub party!

How could Z not like this one?

I was worried about either chasing him around a garden in the cold wet weather or being freezing standing outside waiting for him.

The hot tub was in a gazebo, meaning it held the heat in so I wasn’t cold waiting on him to jump out. Of course he didn’t try and even attempt to jump out!

He loved it. The lights in the actual hot tub, the lights above and of course a bubble machine! This was sensory heaven for him.

After around an hour with Z bouncing about I was soaked! That’s when I started to get cold!! Well it is November and around 7 degrees. Of course Z wasn’t cold he was in nice warm water and those lights kept his attention!

Three hours later I was dragging him out. A drink and some crisps and he wanted to go back in.

If I had gone to a hot tub party before Z’s birthday I’m sure I would have gotten him one, maybe for my birthday end of November?!

So thank you K for inviting Z to your party, he had loads of fun. Thank you R &D for getting in with him and entertaining him!

Please Santa can Z get a hot tub for Christmas?!

Posted in autism, friends

Friends and autism

Friends.

I’d say Z don’t have friends as he prefers to play alone but I think that wouldn’t be the truth.

Since he was small it’s been the same, but he’s always taken to one out of the girls at playgroup. Him and E, they always had a bond, maybe it’s drifting away the older they get, when differences are noticeable, E wants to play games, chase and chat, that’s not Z, he likes to run and jump. She will still follow Z around when it’s just them two together, she watches, she observes, she copies him. Maybe when Z learns to use his words E will be that little older and the friendship will return to how it once was. She still says Z is her best friend, and will introduce him to her other friends.

All the children he spent many hours with before school all ask about Z so he has friends who look out for him and accept him even if it’s kind of a one way friendship for now! They know Z is different and they’ve never really questioned it just accepted it. Some will sort of mother him, which is so funny to watch.

Lately, since being in school and I as a parent has spent more time with other parents all in the same position as me, I’ve noticed that Z does play. Not like the children we went to playgroup with, they play. Z, B and G watch one another, they smile at one another they accept one another. They play in a unique way, similar to that of young children at that Parallel play stage. They chase one another maybe not realising that children play the game tag in the same way but the boys don’t play tag, when one has enough they just walk away and get on with something else. Just recently I watched Z play a game with G, to us it was like cat and mouse, to them it was fun, Z would run and G would attempt to push him off. There was no nastiness in being pushed, Z laughed, and carried on. They were laughing, the we’re looking at one another, this was two children with autism playing.

Where as Z and B play, it’s more rough and tumble, both appreciating the sensory feedback they get by being touched by one another, by being laid on or climbed over. Both laughing and just kind of accepting what the other one needs, and when enough is enough I love how they both walk their separate ways!

I never thought Z would have any friends, he’s never shown any interest in children as children, now he’s starting to watch them, take notice in them and engage with them, which as a parent shows me that maybe Just maybe he is capable of making friends.

Blog was originally written for family fund.

Posted in autism

Autism – what people don’t see

With more tv series starting and autism in the press more, it always shows autism as these ‘clever’ people. They show people in working conditions and in mainstream school.

Never is it shown the hardships that some families face daily, the frustration of not being able to tell you what they want, or the frustration of not being able to get out their emotions, to the mess of the home as most children I’ve now met are all sensory seeking. If that means climbing and jumping like Z, pulling everything out, to smearing. Now that’s one thing I really couldn’t deal with. I couldn’t deal with the smell, never mind cleaning it all up. To the family arguments from all being so tired, and the child taking up all the time. Most people don’t have the baby sitters to be able to enjoy a date night, or even a quick trip to the cinema.

Then you have the violence. This one I’ve not come across yet, as I was told always add on yet to autism I’ll add it on to the negative. The hitting, kicking, spitting, house trashing, yes this happens, a lot. Parents being used as human punch bags.

As fast as I clean my house Z comes behind me and everything comes back out, he doesn’t play with it he just likes them out. Why? I don’t know, maybe it’s just something he can control. He’ll always be able to control that as he can always find something to pull out. I’ve come to the conclusion I’ll never have a tidy house, if there’s wallpaper he’ll try to peel it off, there’s grubby hand prints everywhere from his climbing, go upstairs and every bed will be stripped any time of the day, things will be on the floor. From bits of crisps crushed up, again every time you hoover he then wants another packet.

People don’t see the struggles of change, of attempting to go shopping, or when you do manage to get out and that child is still in nappies but no place to change a five year old, that’s stress.

The meltdowns that can last hours, the reason unknown.

No one sees the struggles. No one sees the worries of the parents. No one sees the parents cries as I think it’s just something we just get on with.

I asked what others thought.

Miriam who blogs over at Faithmummy says

“ The through the night worries of your child. The meetings where everything is blamed on your parenting. The behind the closed doors relationship struggles because of lack of sleep, stress and money worries.”

Victoria who blogs over at Star light and stories says

“For me, it’s the look of utter delight on my daughter’s face at the unconditional love of her brother. I was so worried how she would cope with a sibling, but his adoration makes her braver everyday.”

Then Reneé over at Mummy tries .

This part with permission is taken from Here.

“All any parent wants is for their kids to be happy, and it’s heartbreaking watching them be sad………it’s made me realise more than ever that she needs kindness and love to be bestowed upon her from all directions.”

Posted in autism, school

A note to Z’s teacher

Eight weeks have passed that you’ve now been teaching Z, I’ve only spoken to you briefly after school.

The first time we met as a parent I was nervous, apprehensive and scared. You see my son has been in school a year and half, he’s come on so well, I was scared of him going backwards, regressing. His language was just starting to make some sort of sense before the holidays I was scared that a new teacher, new class mates and six week off would have an effect on him.

It hasn’t.

The first tidy conversation I had with you was parents evening last week.

Z is coming along well, you seem pleased by his progress and maybe, yes it was time for a new teacher. I’m also guessing that come July I’ll be feeling the same as last July, now if only next year he can go and have last years teacher back and so on every year!

Looking back it must have been hard for you as a new teacher coming in with us parents practically crying because we were loosing the last one! I’ll have to try and remember that for July, that couldn’t have been nice for you, and only now I’m seeing that as I’m writing. So I’ll apologise!

Z still loves coming to school so you can’t be that bad!

I can’t say he’s done much more in eight weeks but I’m hoping by the summer he’ll have made loads of progress no pressure there miss!

So here’s to the next term and the year that follows. As much as I can say I miss his old teacher we seen her a little more often, maybe not after eight weeks so maybe I felt like this this time last year.

As a parent it’s hard sending your pre verbal child to school, you worry about him, what goes on he can’t come home and tell me. I’m guessing as a parent there will always be that worry when he moves to a new class, a new class that we would have already have sort of known the teacher unless for the third year running well get a new teacher then I’ll be back to being that worried mother!

So thank you! Thank you for doing the job you do, one that allows me to send Z to school and not have to worry.

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!