Posted in autism

Respite

When you say you’re having respite, other Sen families get it straight off, others not so much. You kinda get looked at as if to say well I manage alone, or really, you wanted a kid you should be looking after them! I know that’s what I would have said pre Autism days!

I never wanted to leave Z with anyone, I still won’t. I’ll only really ask someone to have him if stuck. Then there’s only certain people who I’d leave him with anyways.

But for some families respite is really the only chance they have to maybe do nothing, to clean or even sleep, to head to the doctors or meet with a friend for a coffee. I know the first time Z went I was Ill, I slept. I was so relived to be able to sleep.

Second time I had a clean third time I went out!

After the week we’ve had this week I think he was relieved to be going out with his pa tonight. It’s only 1.5 hours a week ideally for me to go to Nordic Walking, last week I headed to the theatre and tonight I’m doing nothing! I’m going to eat food in peace and not on the stairs, I’m going to put my washing to dry and then the 1.5 hours will be gone it’s not like it’s an Day and half! I’ve spent today cleaning so I can sit and do nothing before picking him up and going to soft play!

Luckily his pa will take him anywhere and do anything, today they are going to enjoy a hot tub! What a life right…..

But for me the 1.5 hours are enough to stop, think and reset for when I get him back!

Posted in autism

Bed time meltdown

Every night I have the sleep performance the screaming the bed refusal the hysterical sobbing this has been going on now for 40 minutes tonight but we’re into week two.

I’m shouting I’m sure people shopping in Tesco are scrambling to get into bed, and I live like two miles from a Tesco. I’m sure my neighbours must dread bed time, the screaming then silence. It’s horrible. We’ve tried letting him have the tv on yes sometimes it works he’ll go to sleep whilst watching it. Tonight he was over tired and wild he’s always wild when over tired, like trying to climb the wardrobe. I’m not sure even what he jumped off onto his bean bag and split it, yes there’s 100’s of those white balls everywhere to add to everything he tipped up.

Z is bright red from crying and kicking the bed. He’s trying to climb everything to push things off to throw anything he can get his hands on, trying to hit me push me out of the room. Trying to line books up on his bed so he can’t get on it.

Tonight I shouted way worse than I ever have. I threw his books out of the room I hit the wall in temper ( thankfully it was the stone wall and not plasterboard!) ouch!! there’s only so much of a strong 5 year old hitting you and in meltdown mode he seems even stronger. It hurts. I know I have many a bruise from Z’s outbursts. I know he can’t help it but he’s 5 what am I going to do when he’s older. He’s pushed everything off his shelf, I know the older he gets the less will be in his room so I won’t have the mess to clean up everyday. It’s mentally and physically draining for the both of us. Me constantly telling him it’s bed time, Z repeating bed time but then screaming as if he’s all of a sudden terrified of his room that he’s happily played in for the last hour.

For his own safety he was trying to get the tv off the wall at one point, I had to wrap him in his quilt and lay on him oh I took a battering he freed his legs and arms,he pulled hair, he kicked and he screamed. Two minutes later if that I could just feel the relief leave him, laying at the side of him tickling his back listening to him cry then the random words with ‘I love you mummy’, brings on all the guilt out that I’ve just shouted at him.

The late nights the early mornings they are exhausting, 10.30 bed is later that what I’m used to. The 5am wake ups if going to sleep at 7 even 8 I’d cope with but 6.5 hours sleep he can’t keep that up. He’ll kill me.

I’m trying not to shout at him more so as when he’s jumping back into bed he’s covering his ears knowing I’m going to shout at him. It’s hard work it’s endless tidying from 4-8.30 or so he makes a mess down stairs then goes upstairs all I seem to do is clean up the same things everyday.

He’s snoring oblivious to everything he’ll wake up and come running in for a cwtch hopefully at 7 and not 5.

Somedays I really do hate what autism brings. Just makes something so straightforward such hard work

Posted in autism

Toilet training day…..

Day I’ve lost count of toilet training…..

I think we’re on day 16 or there abouts! It’s been a long two weeks holiday.

We’ve found that if both of us are in the same room Z would rather wet himself. If I leave he’ll ask dad for ‘toilet’ for me he just runs to toilet. How it’s going to work in school tomorrow I’m unsure, but is it wrong to say he’s not my problem ?! No if he goes backwards so much I’ll be asking can I take him myself!

Yesterday we attempted drums and a visit to J, drums he stayed dry then wet at J’s twice. Brought him home and wet again.

I thought we’d kinda gone backwards.

Today he needed a wee, now he can tell and so can we, he refused to walk to the toilet, ran up the stairs and peed, he done this twice. Whilst laughing at us, I left him in his wet bottoms that he wasn’t happy about, he doesn’t mind it running down his leg, I’m guessing just in pants it drys, in bottoms it stays wet. This he doesn’t like.

Just now he’s calmly walked into bathroom saying ‘toilet’ sat on the toilet ( I quickly pulled him up and pulled down pants!) instead of waiting for me to pick him up and peed!!

Maybe just maybe we’re getting there!

We’ve not only had to teach the toilet training but awareness of when he’s needing to wee, also the requesting, and speech. From a ‘non verbal’ side of things Z not only calmly walking into the toilet is a big one at the beginning I was chuffed when he was peeing on the bathroom floor as he was in the correct room. To now actually requesting using words to say toilet is a huge achievement in itself.

Hopefully its now finally clicked, and when this is what’s expected of him at school all day every day it’ll be bye bye nappies for us during the day.

Posted in autism, Toilet training

Day 10 Toilet Training.

Day 10, 10 days of near enough stuck indoors, or rather Z has been stuck indoors. We’ve been in pants from 7ish till 4.30 ish every day.

Progress.

After day 4 I was ready to give up! (You can read about day 1-3 here ). But I’d spent 10 days in stuck in the house anyways so wasn’t going back. After day 4 and a day from hell we got a little better, and I mean day 4 was rough, he peed everywhere bar the toilet, from a jigsaw box, to the window, kitchen, get what I mean from day from hell now?! When his ABA therapist rung me on the Tuesday I said I had nearly given up, she went through the data and said he hadn’t done too bad, haha I think she was trying to be nice, and her only concern really was the amount he was peeing. Well she had told me to up his fluids! So from day 5 we had to find his normal pee pattern and a bigger motivator. So out came the iPad. Now every time Z pees on the toilet he gets 20 minutes of ipad time.

Day 6 I actually left him with respite while I headed to the dentist, he made the bathroom ( ok were struggling to get him to make his way on to the toilet!) he actually got his little butt out of the dogs bed, running to the bathroom was a huge improvement and I accepted it as a win. ABA therapist rang and agreed, even if a tiny bit of wee went down the toilet he got his iPad. he quickly got the hang of it.

Day 7 we were winning at toilet training.

Day 8 an was our first time out. We headed to a mates, minus a nappy, he was happy to sit on her toilet even though I forgot his toilet seat. He had an accident as soon as we got there but stayed dry the rest of the time. He headed to nans where he actually peed on her toilet! Ok more so everywhere else but he was sitting on the toilet, not only once but 3 times.

Day 9 and daddy was home, I think we went a little backwards yesterday as when Z was running into the bathroom and started to pee daddy would shout and Z would stop peeing, that meant he was running more to the bathroom and a few more accidents in there. But with dad being in work last week and only me covering the toilet training I’m not surprised Z was a little confused! I did take him to his drum lesson yesterday where he did have an accident but with that only being his second outing I’m assuming that he has to learn that he can’t just pee any time he wants when out so in the grand scheme of things I’m not too worried about that, we will have accidents I’m prepared for those when out!

So today we head into day 10.

We have to go out today, I could wait until 4.30 when he’s in a nappy or we could risk a walk minus the nappy and hope he does ok?!

Posted in autism

A-Z of Autism 2018

After doing A-Z of autism in 2016 and 2017 I went and done one for 2018.

I’ve not looked through but I’m guessing so many have changed.

A – Acceptance, something I think were still waiting on. The awareness seems to be places but are people really accepting of Z’s ways?

B – Books , at the moment Z loves books. I’m pretty confident that he’s actually reading them too.

C – Cwtches, Z now gives lush cwtches!

D – Destruction! Yes, Z causes mass destruction all the time!

E – Eggs, Z loves kinder eggs, well any eggs he can peel! He’s loving sitting with a boiled egg and peels the shell, ok he doesn’t eat the egg but it’s all progress that he’ll actually touch it!

F – Friends, these include my friends, and Z’s they are always there

G – * name of school begins with G, he loves it, the staff are amazing with him and I couldn’t have chosen a better environment or him to learn and progress in.

H – High Five. Yup, ask Z to give five and he does with a huge cheesy grin, say give another five and yup he does, two hands up and say give ten, he hits two hands and laughs!

I – Innocent smoothies! The amount he goes through we really should be living at fruit towers!

J – Jigsaws, he’s gone back to jigsaws, currently doing 150 pieces independently!

K – For his PA’s daughters name, who Z loves, she’s amazing with him, she watches out for him and accepts him for who he is, even though she’s not really that much older than him.

L – Laugh – Z’s laugh is infectious, he has such a belly roaring infecting laugh, even when he’s being up at 3am and I could happily dump him he still makes me smile listening to his laugh.

M – For Z’s PA, who like her daughter loves Z, will do anything with him and he’s really lucky to have found a really good PA.

N – Noisy, never let anyone tell you that a pre verbal child is quiet. Z Is nosier than anyone I know!

O – Over Sensitive, this is to people eating and certain noises. I think they hurt his ears and he lashes out. Hopefully this is something we can learn to control.

P – Progress. How Z has progressed in a year is amazing.

Q – Quick! When he wants to go or do something it’s always quickly! There’s no waiting around!

R – Repetition, Z’s learning to repeat lots more from single words to phrases.

S – Sleep, haha what’s that?

T – Teacher. Don’t get me wrong I’m hoping all Z’s teachers are going to be someone he loves, after seeing his annual review video and the one picture where he’s just looking at her with love means so much to me as his parent. Even though Z can’t tell me he likes school or he likes his teacher seeing his eyes light up when he sees her is enough to tell me he loves school.

U – Understanding. I think Z’s understanding is getting a little better, a few times lately I’ve asked him to get his shoes and he has! It all comes under progress right?!

V – Voice. Finally starting to hear his little voice is something that last year we didn’t really hear much of.

W – Water. He loves water, he loves swimming at school at loves the bath!he knows the sea and the puddles!

X – Xylophone, one of Z’s favourite words to spell, he also loves the musical instrument!

Y – Young, Z’s still young, we have plenty of opportunities to learn, plenty of time to achieve and spread awareness and plenty of time to ACCEPT

Z – Z will always be for Z, he is who is is and one I’ll not change!

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?!