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? 

Posted in autism, Toilet training

Nhs Nappies. 

Before anyone starts this isn’t a pop at the NHS, I think that giving disabled people free nappies is something that they don’t have to do, but as the service is there there shouldn’t be any discrimination into any disability, and I feel there is.

Z is 4.5, non verbal and still in nappies, well pull-ups. Why pull ups? Because the shops don’t sell bigger nappies. Size 6 nappies were getting too small, they were rubbing inbetween his legs making it uncomfortable to walk never mind run, and run is what he loves to do. What’s next when the shop size no longer fits? 

That’s where the NHS comes in, any disabled child ages 4 and over are entitled to 3 nappies a day, yes 3 is laughable but I’m guessing that’s another post one day if I ever get my pull ups. 

I said I didn’t want nappies, why? Well because it’s a size 6, or an extra small adult, or a pad. I’ve just saidsize 6  no longer fit him, and I’m prepared to save the NHS money by buying size 6 nappies myself, and the extra small adult are far too big, and a pad? As a woman who has a period once a month who has to wear a pad for 3-4 days and at day 3 can’t wait to say goodbye to it for the next four weeks, there’s no way that  one that Z would tolerate a pad in his pants, two how uncomfortable would that be Day in day out and three how is that ever going to help toilet train him? At least pull ups he’s learning to pull up his ‘pants’. 

Again I was asked do I get NHS nappies this time during the peads appointment, I said no explained that I wanted pull-ups but was advised they didn’t do them, yet know others have those pull ups. So a phone call was made, was advised that I could purchase pull ups at cost price, so yes they do do pull ups, which I knew anyways. 

Now fast forward a few months later. Z’s doctor agrees with pull ups for his age, continence team say no. 

Now I’m ready to fight. 


The pull up that currently fits Z, the nappy the NHS wants me to put on Z, and a pair of Xs men’s boxers. 


See the difference in size here? 

The nappy will come up to Z’s chest. Now we all know what happens when he wee’s, the nappy holds it, yes now he’s got a wet belly. Or, the nappy now being heavy falls down, again, between his legs and we’re back to square one of rubbing his legs and not being able to run. 

Now if I sent him into school with those pants on, wonder what would happen ? I’m sure there would be a note home saying something along the lines of please get clothing to fit Z! Why are using adult nappies different? 

What if the shoe was on the other foot and a disabled adult had to squeeze into a xl children’s nappy, you think that would be ok? Nah, something would be done. So why are children being pushed aside. Forgotten? Or is it that disabled children don’t have a say? They are still children, they still deserve dignity. 

Why are pull ups not given out as well as nappies. I’m fortunate Z can stand, I whip of his bottoms and on goes the pull up,  discreetly.  I hate laying him down to change his bum. On a stinking dirty pee stained floor. Would anybody in their right mind just go an lay on a public toilet floor? Why should I do that to my son? What because he can’t talk and tell me the floor is dirty it’s ok? 

So tomorrow I have a meeting with a lady from continence team this isn’t about me wanting what no one else got these products are avaible, maybe not local but the NHS is the NHS. Why should any child be left out? 

Posted in autism, school

 A letter to Z’s teachers 

Eleven months, thirty eight weeks, one hundred and ninety days, one thousand three hundred and thirty hours that’s how long you’ve watched Z and roughly six hundred nappy changes! 

Not long left, twenty days and counting! 

I know if he could talk he would say ‘Thank you’. 

As he can’t say it I’m saying it for him. 

Last September Z started full time, of course I was nervous, I was giving you my wild child for all them hours. My child who’s still in nappies and who doesn’t say a word about his day, to a school I didn’t really know much about. Yes, he’d been part time for nine months but he hadn’t really bonded with any adult in the room, so full time was going to be completely different. I was nervous, not knowing who the teacher was, as I said I didn’t know enough about the school or staff to not be worried. I was just handing over my giant baby to be looked after 9-3 when knowing if anything was wrong he wouldn’t be able to tell me. 

But I needn’t have been worried. To see Z progress in a few short weeks was amazing, first parents evening not long after he started you were all pleased with his progress, he had kind of grown up over the holidays, he was ready for school. 

Days went to weeks, weeks to months and I could see the way he’d look at you all, with love. Easter, when we had a Bonnet day, was when I noticed the bond he had with you all, he’s comfortable, he smiles, he laughs and  he listens. He’s treated with love and affection, school really is his second home. There’s no way he could react like that on a one off which shows me that’s how he gets treated every day. Some parents may get jealous, I’m not one of those parents I’m thankful that he’s found others that he’s comfortable around. Others that can love him like I do. 

When he started saying names at home the smile would go right to his eyes, ok, when the one name was mentioned he would grin and go all shy, he missed you all as those Easter holidays showed me when all I had was teacher, bus and school over and over again. First day back and he couldn’t wait to get back to school. People say oh it’s the routine the reassurance of the building. No it’s the people who look after him. 

I’ve enjoyed getting to know you all from those five minutes of what he’s been up to at the end of the day to ‘grwp’, this has been great, not only for the help and an insight of how you manage him but to see the work you all do every day. He’s not easy to manage, he can run, and quick! But you try and keep trying, and that I appreciate. Yes it’s your job, yes you get paid, but not enough in my opinion, every morning you have smiles as you take him into class and every afternoon you bring him out laughing. You’ll answer or find answers to any questions I throw your way! You treat the children as one of your own and for that the children not only Z, love and respect you for it. 

So thank you, thank you for watching my son this past year, thank you for taking care of him, thank you for working so hard with him to master new skills, but most of all thank you for making his first year at school fun. It must be fun for him to want to come back every day. 

I know in twenty days he’ll be saying goodbye to you guys, I know he’ll be happy with his new class, teachers he most probably already knows them. Bet he’s  picked out who’s going to be his tickler and who he’s going to try and wrap around his little finger! It’s the parents who have to adjust, it’s like going back to the realisation that portage stops, and you’re on your own! 

Next year as much as I’ll worry about him going back I’m guessing every parent does, I know he’s safe, but it won’t be his first year again! He’s used to the school, the faces and the routine. It’s just another new chapter in our never ending story!