Friday, 17 July 2015

“Waiting For A Delivery”


It’s always the way, isn’t it. You place an order for something, or make arrangements for something, and then something else pops up and interferes with your brilliantly made plans.

I ordered a product weeks ago. Months, even. It was out of stock, and has been since the order was placed.

Yesterday I got the e-mail I’d been waiting for – it was in stock, had been dispatched, and would be delivered to me by courier today.

Unfortunately, today I have a hospital appointment, so there will be a portion of the day I’m not here. It would be just my luck for the delivery to arrive while I’m out. (Because they can only say delivery will be “between 9am-5pm” and can be no more precise than that)

As the time I have my hospital appointment means I may not be home in time to collect J from school, I’ve made arrangements with my mum, who is coming up to my house as I write this (she’ll be on the M25 at the moment) so that if I’m still at hospital, she will go and collect J from school. This means even while I’m out, she will be here to accept the delivery I’m expecting.

What are the chances that the courier will arrive during the 10 minutes while mum is collecting J from school before I am home from the hospital? Or that I pull the car into the back garden just as the courier rings the front doorbell?

I’m going to have to keep my fingers crossed; I don’t want to miss this delivery because I’ve been waiting SO VERY LONG for this product to arrive! Product review coming soon!

Wish me Luck,

Mummy P


Monday, 13 July 2015

“Duxford Air Show”


Grandad P, Daddy P and J spent the day at the Duxford air show. Judging by the fact all three of them were utterly exhausted (in that contented, happy kind of way) by Sunday evening, it would seem that they all had a good time.

Daddy P took J’s ear protectors, and this was the first event he’d had them for, so I was interested to know how he got on with them. Obviously with it being an air show, I was thinking they would be most needed by J for when he was around the aircraft in flight – but while he did wear them a few times for that reason, the main success was in getting him to use the public loo, since there were those ‘Blade’ style hand driers which are quite loud and which always freak him out the most. Daddy P reported once he put the ear defenders on, J was quite happy to go into the loo and use it without worrying about the noise of the hand driers at all.

Grandad P got J a red aircraft which he refused to let go of last night once he got home, it came upstairs and joined J in bed to start with last night. I removed it before he fell asleep but wasn’t allowed to move it too far away from him; it had to sit on the chest of drawers where he could see it all night – and this morning he took it to school with him for show and tell. In the playground before school he was quite proudly showing it to all his classmates before school started.

J was quiet and cuddly last night when they got home – it had been an early start and a long, busy day for them – after eating some dinner I got his bath sorted out early and he was asleep in bed by 8pm (which is really his ‘proper’ bedtime, but for a bath-night it’s rare that he’s actually in bed by then, nevermind asleep) Both Daddy P and Grandad P were asleep on the sofa early (Grandma P sent me a photo after I sent one to her!) so I think a good day was enjoyed by them all.

Daddy P said that J’s behaviour was really good overall, something which Grandad P had also said to Grandma P, with only a couple of moments when he started to get carried away. I’m so pleased that the three of them had the opportunity to do it. I’m hoping times like that won’t be so few and far between now Daddy P and Grandad P have done it once and it’s been fine, maybe it’ll encourage a few more days out for them!

So for the first test run of the kids ear defenders, while it wasn’t so much the noise I’d anticipated that he’d want to cut out, I think we can call them a success because they did cut out noise that J wanted to, so that’s a plus – it stopped him bolting, which was my main concern when he feels overwhelmed by noise, and that’s what I wanted. So far, so good. Obviously now they’ll be part of our luggage when we go out, so we can update as needed, but in my opinion so far, if you want a decent set of ear defenders for kids, you could do worse than these. Ordering is straightforward, product arrived promptly, in good condition (brand new / boxed) with good packaging. Product is solid feeling (well made) good quality / well-padded and comfortable / folds small. I would recommend these.

Peace N Quiet,

Mummy P x x x 

Wednesday, 8 July 2015

“Mummy, It’s Too Loud”


From a young age, J has often complained about certain noises. For as long as I can remember I’ve had to be careful about hand driers in public toilets – even someone else using them can send him screaming off into a corner holding his ears and it can take him some time to calm down again afterwards. He went through a phase of hating the hairdryer and the hoover at home – now he will tolerate the hoover as long as he has warning of me preparing to use it, and on the understanding I don’t use it in the same room he’s in; with the hairdryer he is now happy to let me use it on him, but again it’s only on his terms – if he wants me to use it to dry his hair, and we have to count “1,2,3” before I switch it on and if at any point during the process he asks me to turn it off I have to do so quickly, or else he’ll freak out.

Other triggers I’ve found is the noise of a busy main road – the cars etc rushing back and forth is OK for a while, but quickly overwhelms him if it’s constant; the noise of helicopters is fascinating for him for a short time, but again it will quickly get too much. Sometimes, crowds of people is too much for him to cope with – other times, he’ll happily deal with it. I’ve found a lot of it depends on how tired he is, how much he’s already dealt with over the day, and also what his focus is – when we’re in McDonalds for instance he’ll deal with the noise of people talking, the beeping of the tils and the cooking equipment, the noise of the speakers for the drive-thru and the music playing, because he is focused intently on his Happy Meal, his toy, and his balloon – but if I take him into a ‘normal’ restaurant with no distraction, for instance when we’re seated and waiting for our meal to arrive, or in that aching long gap between main course and dessert, then the noises of his surroundings become too much and he’ll hide under the table covering his ears, or his go-to option tends to be to run, and try to escape the situation.

Sometimes, I find it’s not worth getting him worked up and upset and I will avoid the situation to avoid him having a rough time. Other times, it’s an important situation, such as a birthday meal or other special event, and we’ll go and deal with it but it takes careful planning – I’m never without some Lego to keep him amused, or a book we can read together, even a small packet of crayons or pencils and a colouring book to pass the time. When sitting somewhere I’ll try to sit us in a corner if its possible, and let him sit with his back to the wall and in the corner seat – not only does this seem to help make him feel more comfortable, but it slows down his progress if he does default to the ‘run’ setting, which can buy me valuable seconds to get up and catch up with him myself if necessary.

One thing I wasn’t aware of was how common this hyper sensitivity is amongst people on the autistic spectrum. I found this article enlightening and realised that once again J aligns with ‘typical’ characteristics of ASD.

A few weeks ago, Grandad P asked J if he would like to attend Duxford air show with him, and Daddy P. Initially J wasn’t too keen on the idea – it’s a totally new concept to him, he’s never been to an air show before as I was aware that the huge crowd and loud noises would be overwhelming to him – but he’s almost five now, and Daddy P went to air shows a lot with his dad as a child, as I did with my grandad, and it’s something we both associate with happy childhood memories, something I don’t want to deny J of. So we spoke about it some more, Grandad P showed J some models of aircraft that will be at the show and explained a bit more about it, and J liked the sound of it so by the end of the afternoon he was excited at the prospect of a day out with daddy and grandad.

My concern remained the large crowd and the noise. After all, if it was billed as a fun day out the last thing I wanted was J to become overwhelmed and either have a meltdown about it or run off, both of which would be bound to put a dampener on the day. I spoke with Daddy P about the idea of some ear defenders, and he agreed that sounded like a very good plan.

I ordered these from E Bay, and they arrived within a few days of placing the order. They’re a bright, funky colour, they’re sturdy and appear to be designed with comfort and practicality in mind. I was very pleased when they arrived.

So far J has only tried them on in the house, and he said they made everything sound funny – well I suppose they would, as they minimise sound so in an already quiet environment it must be a bit disorientating having sound minimised even more. I’ve explained to him though that he’ll take them with him when he goes to the air show, and if he feels that the noise is getting a bit much, and he’s getting a bit overwhelmed, he needs to tell daddy or grandad and they can help him put his ear defenders on to help him have a bit of peace and quiet without having to leave the situation completely, because I want him to see the aircraft in flight and enjoy the show, to not miss out on the point of the air show because of the noise that comes with it. The fact that the pilots will also be wearing ear defenders is something I’m hoping will encourage him to put them on, as it won’t seem out of place to be wearing them if he sees other people wearing them too.

The air show is this weekend, so I’ll let you know next week how he gets on!

Peace & Love

Mummy P


Wednesday, 1 July 2015

“Toothbrush Tantrums & Bathtime Blues”


Ever since he was little, we’ve never really had much of an issue with J brushing his teeth or having a bath or shower. He went through a phase about a year or so ago of not being keen to have a bath, but at the suggestion of my friend @TheLittleBoysWhoWaited we introduced glo sticks to the bath as a reward and because he adores glo sticks this totally reversed the situation – it ended up being difficult to get him out of the bath!

For the last couple of months though, for no apparent reason, J has had an aversion to brushing his teeth and having a bath or shower. Yesterday was a prime example – he was fabulous all day, from getting dressed in the morning and walking to school, all the way through beyond dinnertime. He went upstairs with Daddy P at 8pm for bedtime without any fuss. He got into his PJs. He walked into the bathroom, and took hold of his toothbrush. And there the argument started.

He brushed his teeth for perhaps 10 seconds before stopping. Daddy P asked him to carry on. “Please will you help me, daddy” was the plead. Daddy P said “You carry on for a little longer, and I’ll check them when you’re finished” J wasn’t having any of it. He repeated his plea again and again and again, becoming louder, becoming more upset, begging Daddy P to help him.

Now, this is where we hit a stumbling block. Daddy P will continue repeating himself as much as J is, gradually getting louder and more upset, and the two of them end up getting upset and frustrated and saying the same thing over and over again. It doesn’t resolve anything and it upsets me to hear them go at it like that. Eventually Daddy P walked away and J was trying to bargain with him “If you come back, I’ll do it” and Daddy P was saying “No, you haven’t done it when I’ve asked you all the other times, why would I believe you now?” I went to the bathroom and prevented J from getting out of it, explained calmly that he needed to carry on brushing his teeth and Daddy P would come back as soon as he carried on. He tried to get past me, his breathing fast, tears rolling down his cheeks, pleading with me, “I need to get out, I need to get Daddy” and I was saying “No, no, if you sit down and do as you’ve been asked Daddy comes back, if you don’t then he won’t” but it took quite a while for him to calm down and do it. Maybe we’re doing it wrong – we’ve tried every way we can think of and it still continues to be an issue. He knows how to brush his teeth – he knows to brush his teeth for 2 minutes – he was so taken with Daddy’s electric toothbrush we got him his own special Spiderman one which he loves – his toothpaste hasn’t changed, he still uses the Aquafresh one for his age group and suddenly halfway through the existing tube he started complaining that it’s “too minty”.

Every morning before school he brushes his teeth for me without an issue. I cannot work out why on earth he feels so differently about brushing his teeth in the evening – and it’s not just Daddy P that has this toothbrush terror experience, if it’s my turn the same happens at the same point. I don’t know why, I don’t know what kicked it off, I don’t know how to stop it because I don’t know what started it.

As for bathtime … well … I really don’t know what on earth happened there. Our shower was replaced a while back, when the motor failed in the old one, but J is still very much focused on the noise of the shower, despite the fact the noise was due to the old one having issues and the new one is much more quiet. However like with his horror about hand driers in public toilets, as soon as you reach for the shower controls in front of him he freaks out, covering his ears, “No, no, no, no” crying big fat tears and trying to run away and hide. I keep saying it’s OK, it’s the new shower, it’s not as noisy, but even so it takes a while for him to calm down.

Once in the shower, he then doesn’t want you to wet his head, because he’s so frightened of water going over his face. Despite the fact he hasn’t had a ‘bad’ experience of soap in his eyes, and I’ve deliberately got him some kids shampoo which doesn’t sting the eyes, he will have a massive freak out about that, too, and then he’ll refuse to look up like you’re asking so the bubbles and water goes into his eyes and over his face and despite the fact it’s kids shampoo he’ll freak out. He doesn’t like the way the water feels on him, because it tickles, and rather than saying “it’s too hot” or “it’s too cold” he’ll just squeal a high pitched squeal and dance and try to run away so you’re left frustrated and trying to guess what the issue is. Sounds like it’s easier to just give him a bath, right? Wrong.

The trouble with a bath, is getting him in it. He’ll come into the bathroom and then run out again. He’ll shout, he’ll scream, he’ll freak out. He’ll squeal about the temperature of the water, and if you manage to persuade him to put one toe into the water chances are he’ll scream even more and run off screaming. If you manage to get a whole foot in, then it’ll be with much screaming and crying and guilt on my part because I think this cannot be good for him – it must be re-enforcing the idea in his head that bathtime is something to be feared and dreaded and seen as something horrible. Once in the bath, he’s OK, and he’ll wash no problem, but again the hair washing is a traumatic experience, with more screaming and crying and carrying-on.

Last weekend, we went to my in-laws house, as my sister in law was there for the weekend. With her was my nephew and my niece. J was thrilled to be going round there and seeing them but unfortunately he was far too over-excited from the start and the day was particularly exhausting with much screaming, crying and stressing – and that was just me! I’d had a brainwave, that we’d take J’s bath stuff with us so him and his cousin A could have a bath together; they’d last done it back around Christmas, and had a great time of it, thoroughly enjoying themselves and there was no issue at all from J about any of it. I thought maybe – just maybe – his cousin being there would make the experience more enjoyable for J.

How wrong could I be. It was a traumatic experience of tears, screaming, shouts of “no, no, no” , running off, refusing to get into the bath, arguing etc. Poor A looked on confused – he loves bathtime! – as his older cousin was freaking out completely and the noise in the bathroom was amazing. Little baby A, my niece, came upstairs with Grandma and to my amusement she seemed to find it entertaining – it was deafening in the bathroom but there was little A giggling away as if it was the funniest thing in the world! Me, however, I was less entertained. I was hot, I was exhausted, and I was on the verge of crying. I had to get Daddy P upstairs to help as everything I asked J to do he was refusing to do as I asked.

The entire experience was horrible, and exhausting, and left me cross with J, which made me upset with myself for being cross with J.

I’m becoming impatient now for this CDC assessment – not to put J into a box, but because without this assessment I’m unable to get the support I need right now for dealing with instances like this. As I said, I’m sure by forcing the issue and getting into stressful situations like this isn’t good for any of us – but he needs a bath, or a shower, the same as he needs to brush his teeth, so what else can I do apart from keep persevering, which leads to these awful situations? I can’t cope with his meltdowns at the moment, they’re getting more frequent and more difficult to get under control, and then when myself or Daddy P gets upset as well I feel even more disappointed in ourselves. We’re going round and round in circles, with no sign of it getting any better. I don’t want to spend my time shouting and arguing with him and taking away his pleasures and making things miserable for him, but I need help to better control these situations, to get them under control quickly and prevent them escalating or, even better, help to understand why he is reacting in this way and how I can stop it before it’s started.

His sensory perception seems to go into overload in the summer – whether it’s the heat, the bright colours, the crowds of people, the noise, a combination of it all, I’m not sure, but at times my wonderful, brilliant, bright little boy goes into complete meltdown and I’m powerless to stop it or help him. It seems to get worse each time summer rolls round – whether it’s as he’s getting older, or it’s because the summer is becoming more difficult for him to deal with as he gets older, I’m not sure, but we started off very positively with regards to support from his school with this but since his ed psych assessment we seem to have hit a brick wall and seem to be going nowhere. It looks like nagging Mummy P is going to have to rear her head again in order to get things moving once more.

With that in mind, I’m off to call the school SENCO to arrange a catch up meeting and see if we can’t shift things along a bit. Perhaps with her job role she’ll be able to contact the CDC and enquire whether we’re expected to wait much longer for his assessment, as I fear the longer we wait, the more damage is being (unintentionally) done. I hate the constant battles with him, he’s my boy and all I want to do is love him and protect him, but at times when your buttons have been pushed all day, all week long and you’re tired and fed up of the same old thing, it’s difficult not to snap and shout and handle things badly – I hold my hands up, I am only human after all and I do make mistakes! But I hope with some support and guidance we can make it through this without it ending in the big tears of upset, disappointment and guilt that too-often accompany our days.

Peace & Love,

Mummy P

x x x x x

If you’ve never dealt with a person with autism, it can be difficult to understand. While J remains undiagnosed, as time goes on I feel it is the key to unlocking his issues, better understanding them and helping him. While a diagnosis will make no difference to how I feel about my son, it will help me get the support he needs both at school and at home. For more information on autism, please visit the National Autistic Society UK page.