Posted in autism

When days out don’t always go to plan.

Not all day out goes to plan!

We headed to the sealife centre, I wasn’t planing on it being so busy! Headed for 11.45 thinking lots would be having dinner, mmmm how wrong was I!

It started because he couldn’t get in with the penguins, maybe escalated as he couldn’t see them out of the water like he can in folly farm, that’s what I’m guessing anyways. It was really busy, with buggies, screaming kids and lots of people. The one part he had taken his shoes off to ‘get in’ the water. Me saying no shoes on we can’t get in didn’t help, he could just see faces in the water but couldn’t grasp it was a tunnel. So speed walking commence.

There was a section you could touch certain animals, yea he wasn’t interested in touching any animal just playing in the water! So we moved out of the way and played with the clean water!

Luckily he was wearing his adventure belt to stop him fleeing.

We quickly moved around trying to find the exit, to realise he was soaking, the water had gone right down his sleeves and down to his waist, was far too cold to leave him so wet. So let’s add to his bad day by attempting to change him. Ended up in the ladies in the middle of the floor attempting a full outfit change. With Z getting stressed and by this point I was stressed it was time ten minutes ago to leave we just couldn’t find our way out! With Z stressing, throwing himself on the floor, trying to push his way through the crowds, he caught one lady, I’m chasing after him and she decides to whinge as I didn’t apologise to her. All I seemed to do was apologise to every one, sorry for him pushing your child out of the way! Sorry for him trying to clamber through your legs! Sorry for him screaming and throwing himself on the floor in front of your buggy. But I am sorry that I didn’t apologise to you too!

Towards the end it was much quieter, he stopped and looked at a few fish , but quickly moved on.

So we left, we got back to the car, he was still very upset I’d say. He looked at me once we got back to the car as if to say why? What part of that did you think was a good idea?!

We waited on the girls to come out to meet them for some food.

Z wasn’t going to eat as he really had munched his way through his cheese spread sandwiches and his drink in the car!! But for most of it he sat, watching his iPad in front of the fire!

When chatting away to another parent who’s asd son is now 19 I learnt that there’s always going to be struggles. Even at 19 she worries about loosing him in a shopping centre. Who really worries about loosing a 19 year old in a shopping centre? I’d not thought that far ahead, of course I worry now at 5 because he can’t say he’s lost, what if he can’t at 19? That’s the reality check here. Even if he’s lost to us and he’s not actually lost to himself imagine Just for a second how scary that’s going to be. I’d be going around the place screaming his name, not that he answers to it, worried shoppers what does he look like? 6ft, slim build….. you’re going to get looks like you’re crazy.

How Even though certain things may change like less meltdowns, the need to flee in a shop may pass, eating new foods, using the toilet, the worries will always be there. I’m looking forward to the days when he does actually try new foods or the hormones kick and he’ll want to sleep and he doesn’t run away!! Or when he can communicate his needs even just to say what he would like to eat that week because he’ll eat loads more then! ( I say crossing my fingers and wishing!)

I know Z maybe completely different, he may be similar to this guy, he maybe able to talk and have a conversation with you enough to get by or he may never be able to communicate. He may stick to only eating his crap and he may never sleep! If there’s one thing I wish it would be that he will be able to tell me what he needs or wants!

It was lovely hearing from a parent of an older child, of a parent who’s not going to say oh yes at 19 everything is fine, because it’s not. Autism is still there, these small little children will grow into adults and I may be one of the few but I’d like to know stories of what I maybe up against from people who have been there who is going through it. When we go to groups the oldest is maybe 10 or 11, 19 is way older, way more experience and there are lots more stories to be heard. But what I’m finding the same is when I ask at want age did your child stop doing stuff the answer seems to be around 6-7. So I may only have two more years of finding lines everywhere. I may only have a few years left of nappies? I may only have a few years of food being dropped everywhere as thats when he’s not going to waste any and eat it all instead!! I’m hoping to only have a few more years of no sleep left!

But I don’t know. It’s gotten me thinking of when they are babies and you never knew that was their last bottle etc, will this be Z’s last line?!

So even though I wouldn’t call today a success we tried, we may have kinda failed! But I learnt other than I’ll still be worrying at 19, what Z is like now doesn’t mean he’s going to be like that in 14 years time!

Posted in autism

Knockdown moments

When you’re at that I’m ok place, we’re doing ok, I have this autism parenting thing as good as I’m getting it right now.

Lately you’ve thrown nits at us, you’ve thrown no sleep at us ( again!) you’ve thrown meltdowns, lost teeth,you’ve also thrown new words, high fives and plenty of progress.

Autism has brought us friendships, nights out, getting to know new people and most importantly it’s brought us laughs and memories.

Autism also brings me those knockdown moments I’m calling them. They come when you least expect them. You’re in your we’re doing ok place. When Z first started at Sen school I’d be gutted passing the school he was signed up to, to see his ‘classmates’ run around with one another, form friendships, see photos online of trips, concerts and parties. These pictures of groups of children with the missing child, the child that never made it, the child who still has to be on file incase he’s ever mainstreamed and that’s the school I still choose. The friendships the parents make all laughing drinking coffee there I should stand not at an empty gate. But I got over it like I say I made new friends. Friends that get us. Get our difficulties and accept us, accept the sleep deprived zombie looking Mam that’s begging for coffee! We’re not the strange ones! ( ok maybe we’re still the strange ones!)

But when you see these it does stop you in your tracks, it reminds you that you’ve really not got this! You may have it today but tomorrow is a different day. You are not the same as everyone else, you are reminded of how behind Z is in ways, you are reminded that he’s not part of any social group, you are reminded that he is different and the life you had planned out is completely different. Your child isn’t just on the need help table, it’s at the need help school. You are reminded that you are constantly tired, mentally and physically!

It also reminds you of how far you’ve came, how much progress one small child has achieved, how hard it is each and everyday yet everyday that small child struggles there’s always that toothless grin, a hug and a high five! You are reminded that every night there’s no sleep he’s learning something what I don’t know! But he’s learning how many other 5 year olds are learning things at 4am?!

That need help school is one I never want Z to leave, cross his name off the list he’s not leaving! He has way more amazing opportunities than those of the children in his should have been class, they are working at 5, they have exams at 7 they don’t get to learn through play, to go swimming every week sometimes twice a week, access sensory rooms, have fun throughout school. Z does! He’s not in struggling in a class of 30 he’s thriving in a class of 11 with teachers who love him like their own.

I’m guessing those knockdown moments will always come, they’ll come when kids his age make their communion, finish primary, head to town alone for the first time, leave school and find a partner and settle down.

Of course Z may achieve 50% of those who knows, you still mentally prepare yourself for the knockdowns that can hit at any time and always when you least expect them

Posted in autism

Sorry for what?

When you tell people your son has autism mostly the response is ‘oh I’m sorry’.

Sorry for what?

Ok it’s not what I signed up for when I decided to have a child. I didn’t think I’d be changing nappies at 5, not having a conversation with him at 5, not taken him away on holidays, joining in so many activities that children of his age can do,swimming lessons even standing around a freezing cold field watching kids chase a ball.

But he’s my son and autism is part of him. It’s life.

People may see the screaming child in a shop when things get too much, they may hear me continuously saying ‘good boy’, ‘you’re doing well’ as we do our food shop, may hear me tell him what we need to get next. They may see him not wanting to go in a shop, not attempt to play with other children. They may see him as the strange kid. Know what I’m used to that I’m over it, of course when that ‘I’m sorry’, comes I want to get defensive and ask why are they sorry.

Because what people don’t get to see.

The clever, funny, fun loving little guy.

The smile he gives after he’s done a jigsaw on his own after many many times of trying and failing, of giving up because he’s not got the ability to sit there for any longer. That smile to say look Mam I done it, the look of proudness when I say ‘yeah’, on his little face.

The milestones he’s hit to be where he is now. To be able to walk in to a shop for a few things is something going back last year I wouldn’t have attempted for all the money in the world! Now we can walk around Asda getting pizza crisps and bread for pack lunch! Ok he hates waiting in the line to pay but it’s all coming along.

What people don’t see is how far he’s come to be able to do these things, when he repeats a new word, when he follows a very basic simple command that your average aged toddler can do, or when he looks directly at you and smiles for however brief it’ll be. His infectious giggle, or his belly laugh when he’s babbling away to himself in the mirror.

No one gets to see the challenges he faces every day, but he does and he does them with a smile on his face. He can’t tell me if he’s feeling unwell and doesn’t want to go to school so he goes.

I’m sorry, so for what?

His life?

Our life?

My life?

We know no different. This is all we know.

We’re used to trying to work out what’s up or what he wants. We’re used to the smell of poo and possibly even used to the no sleep.

I’d be lying if I said it’s easy, but isn’t being a parent hard enough?

I’m not sorry for Z, ok some days I hate autism, I hate what it’s taken away from us as a family, but I love what it’s given us, because as I’ve said before without autism Z wouldn’t be who he is. He wouldn’t be that fun, loving, cheeky clever kid that he is.

Posted in autism, New year

New year 2018

Would like to say thank you to you all, without you guys reading what I write I wouldn’t be writing. Thank you for the support with Z, from family to friends to his teachers.

I was quite lucky in 2017, I can’t say it was one of those years I’m glad to see the back of, ok we lost my Nan, but that was also a small blessing for her. We lost a friend along the way too. But I’m sure that really was it.

I know I fought for Z’s pull ups and got them. I made many a new friends this year, I’ve laughed, I’ve cried, I’ve had nights out and things have been cancelled. As a family we’ve accomplished new places, theme parks being and the cinema being a few.

We’ve spent many days at the beach, at friends houses, parks and in the garden.

We’ve progressed so much this year I’m exciting to see where 2018 takes us. I think if the words continue we may even try and get out of nappies!

So 2018, what will it have in store?

There’s a few things I’m going to try and change, again like everyone says my diet will be a big one, with Z getting bigger he can run faster so I need to keep up with him! That means get myself into more exercise, get my butt back to Nordic walking too!

I’m going to try and do my bit for the environment too with cutting down with what I buy. I’m hoping to start using more local shops for fruit and veg, that means I’ll have less packaging. I went to reusable sanitary products earlier in the year that was more an allergy thing but I love them and found a new site so I can actually customise them! Also on that site I’ve found some reusable sponges and kitchen towel. Can’t wait for them to arrive now! I’ve personally stopped using straws, I can’t stop Z as that’s what his smoothies come with. I can’t quite stop using my coffee machine, that will have to be another new year! I need to try and remember my bags when I go shopping so I won’t buy any bags. That’s going to be a tough one as I never remember my bags! I’m seeing a pledge here to cut down on my plastic waste which can only be a good thing.

As for my house hopefully when it finally gets finished I’ll keep it tidy! I’d say I’d have a huge clear out but we have done that this year there’s not actually that much crap here, well it is but it’s crap I want to keep!

So from Z and myself we would like to wish you all a Happy New Year and will look forward to everything 2018 has to offer!

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


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


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.