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Tuesday, 22 August 2017

Emotions in Special Needs Parenting

I've been struggling to write any blog posts of late, for a variety of reasons. Mainly because there is so much I want to say that I don't know where to start, but also plenty I want to say which I really can't write about...yet. We've been having fun though, as I'm sure you can tell from this photo:

I feel slightly better for making the decision earlier today that I will type that stuff I want to say, but leave it hidden, for now. In time, maybe it will help others. For now, I'll quit with the cryptic stuff and tell you my thoughts about a post which popped into my Facebook timeline this morning.

It was actually a video post, from the lovely Kate over at Finding Cooper's Voice (go follow her page, show some support!). In my head, I started to write a comment in reply to her, and then I realised that it would end up way too long for Facebook. I'd love to vlog more myself but am definitely not a natural on camera, so I decided to turn my thoughts into a blog post instead.

In her video, Cooper's mum talks about the emotions which accompany special needs parenting. She describes her family's attempt at a camping weekend with a big group of family and friends. Kate took Cooper along for part of the trip rather than the whole time. Our family tried camping with friends last year, close to home in case it didn't work out and we needed to get away (always have a Plan B). We didn't have to leave, but it sadly wasn't the relaxing kind of easy going weekend away I'd have liked either. Many families enjoy this kind of break over and over but for us it was mostly stressful. 

Although her autistic boy is younger than Sasha, and non-verbal, I still related to an awful lot of what Kate was saying in this video. Over seven years on from diagnosis and I also still feel like asking 'will it always be this hard?' I wish I had the answers for Kate, and for me.

I like to think that I accepted Sasha's diagnosis of autism some time ago, almost as soon as it was given, and I don't feel that I'm going through denial, or anger or depression, or any of those other emotions which are associated with a grief cycle. I've never said that I feel like I'm grieving about a child I didn't have, it was never about that for me.

But. If I'm honest, apart from when I'm blogging, I feel like I spend a lot of the time trying to cover up how difficult this life really is, and how many of those emotions are flowing through me. Kate talks about jealousy and resentment, when she can watch others having easy fun outside the tent/caravan while she has to sit in for hours with her boy. I've experienced similar. Somebody else can swoop in and do a short stint of taking over, but so often the mum is the one who is wanted and needed and who has the responsibility to make sure that all goes well in that takeover stint too. It's nobody's fault, it's just the way it is.

Jealousy and resentment are probably the two most overwhelming emotions which I feel, and yet it is generally taught that these are bad emotions which shouldn't be given in to. It is important not to get bogged down and be negative constantly, but I think it is equally as important to acknowledge that those feelings are there. It's something I've struggled with always - how to say this without making others feel bad, or feel that they are doing something wrong and they need to stop what they are doing in order to make you feel better?

It's not about that though, it's about acknowledging that life as parent to a child with special needs can be hard. I see our 'other side' and know that whilst parenting a neurotypical tween girl is by no means a walk in the park, it doesn't bring the same level of questioning, or guilt, or heartache.

The other main topic in her video which hit home for me was the mention of siblings. Cooper's brother (only 4, bless him) told his Mum that he wished she hadn't come to the camping because then she wouldn't have brought his brother. I know how much those thoughts from siblings can hurt. It was ironic then that the very next video to show up in my newsfeed was a siblings one from Special Books by Special Kids (also a great page which you should go follow!).

In it, you can clearly see the sister's love for her twin. It's so natural, and so gorgeous, and yes they are siblings and I suspect they squabble from time to time, but the overriding impression is of love.

When I started this blog and was desperately trying to come up with a name for the website (harder than it seems; so many names already taken and the need to keep it short and memorable was pressing), I was sure of one thing. That it needed to be about how the diagnosis was affecting our whole family. It wasn't just about Sasha; of course it was a diagnosis for her, but I was just as worried about what that would mean for her older sibling as she grew up. I wanted it to be balanced, and with hindsight it probably hasn't been, because some of it is difficult to write about. 

But the pressure and the guilt of parenting a sibling of a child with special needs is always there. I don't suppose that will ever go away. And when the sibling has 'non-loving' thoughts and wishes that their life was different, then we as parents just have to make our own way up of dealing with that. Because nobody is on hand to tell us how to. It can be equally difficult to keep the scales from swinging the other way though - just recently I found a little snippet in an old notebook belonging to our older sibling which said something along the lines of 'I have a sister with autism and because of that I know I am very lucky because my mummy spoils me'. Hmm. Not the exact outcome I was hoping for there!

So anyhow, to save you all from any more rambling, I'll just end by saying it is challenging. Life as parent to a child with special needs can be challenging in many different ways (you should see the amount of paperwork I have to file!). There are many posts you could google about 'how to help parents of children with special needs' but I'm not going to link to one of those. I'll just point out that Prosecco tends to always help (me. You may want to ask your FWSNC what helps them....).

*FWSNC = Friend with special needs child

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Thursday, 17 August 2017

Siblings {August 2017}

Today I win at being Mum! Managed to get them both outside, having fun together in the garden, while I did some of the huge amount of housework which needs to be done. 

Carpet fitting, shelf painting, tidying, cleaning, laundry, you know, all that kind of stuff. Boring, but at least I knew the girls were having fun. 
Stephs Two Girls in pool

Water balloons and whirlpools in the pool, there's not much better. Bonus for me was managing to also snap a photo for this month's Siblings project, yay! 

Thought I'd also try for a new 'Steph and her two girls' selfie, but as you can see from the shots below, that was pushing my luck a bit too much...

Steph's Two Girls selfie
The Siblings Project - Dear Beautiful

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Wednesday, 9 August 2017

SEA LIFE Blackpool - Review

After a very successful trip out to SEA LIFE Blackpool this week, we wanted to recommend it to everyone. 

Sasha and I were there too but she was just feeling a little camera shy at this point....
As we approached the entrance, which is situated on the famous promenade very near Central Pier, we were welcomed by some friendly staff. There was almost no queue at around 11am when we arrived and we were able to move on into the attraction very quickly - no waiting is always a huge bonus for our autistic girl.

When you first walk in, your party is asked to sit against a green screen background and a photographer will ask you to do a pose or two for some 'special' themed photos which you can collect later on. I'm always a bit wary of these money making opportunities, but our photo was actually really good and not too expensive (£9 for a decent size group photo).

Then you are free to roam - one of my favourite aspects of this attraction. You can come and go as you please, take your time reading the many informative posters or skip through in super quick time (always Sasha's preferred option... I do try and get her to compromise, with mixed results).

The first area near the entrance is a 'petting area' where you are encouraged to carefully touch the sea animals if you would like to, as long as you keep them under water. Sasha wasn't overly keen to be honest, and I'll admit the sight of a fast moving crab put me off a little too! There were several open tanks though, including ones with starfish in - I'm pretty sure they don't bite...

We then wandered around, looking through big glass windows into tanks containing a variety of fish before coming to a big tank for rays. I just love these fish; so graceful, and when upside down it looks like they are laughing at you! 

We arrived there at the right time to hear a member of staff giving an informative talk on everything in this huge tank. Further on there were more rays, and an opportunity for smaller people to get their heads into a bubble and feel like they were in with the fish:

The next section had Sasha's favourites - Nemo clownfish and Dory, and mine - jellyfish and seahorses. I've always been fascinated by the way jellyfish move, ever since we saw a huge one being held by the guide in our boat when we were on honeymoon. I wouldn't fancy meeting one in the sea though to be honest!

The SEA LIFE centre is all fantastic but the highlights are probably the huge shark tank, and the tunnel just after which you can walk through whilst watching lots of fish and the sharks swimming right over your head. There's quite a large section of tunnel, so it didn't feel crowded at all. There are then more great photo opportunities towards the end, such as this one: 

All in all, a brilliant day, and many photos taken - so I've turned them all into a little slide show for you (and us):

Disclosure: we were given entrance tickets in return for an honest review of this attraction. All thoughts and words are our own.

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Tuesday, 8 August 2017

That Back to School Sinking Feeling

Some parents look forward to the school holidays, while others dread them. For some parents of children with additional needs, the removal of everyday demands and chance to relax is welcomed by both parents and child, whereas for others the lack of routine can cause extra stresses.

School equipment

The same could be said for when Back to School time comes around. Some parents are relieved to be able to take their children back to the place where they will be educated and have fun with others their own age; others are not so happy for a variety of reasons.

Today I'm hosting an anonymous guest post which explains some of these feelings. I'm sure this mum would like some support so please do feel free to leave any comments...


That sick sinking feeling in the pit of my stomach as the start of school approaches. And that's just me, his mum. It must be so much more difficult for him. 

Every year I hope it will be different. Every year I hope that this will be the year when he turns a corner, finds a way to deal with his anxieties, finds a way to get up out of bed every morning, get dressed, eat breakfast and get on the bus to school. Then stay in his classes, do his homework . Every year my hopes have been dashed. Every year, school refusal has won. Every year his autism has got in the way of his education and there seems to be nothing anyone can do about it. 

Just three weeks to go, and we're both heading into the final two years of school, an intensely stressful period for any teenager, but ten times worse for an autistic, or so it would seem. 

The signs are already ominous. He says he's not sure now that he wants to go back to that school. He hasn't yet agreed to choose his exam subjects, or go to the school uniform shop. Yet all he needs is a new jumper.

In the next breath, he says he wants to be able to go to school. But where else would he go? There are no realistic alternatives: I spent 6 months searching. There are NO schools near us for academic autistics who cannot cope in mainstream. 

I see no solution, there are no more options left unexplored. Other education options have been rejected for now and he won't even consider home education. 

My son has come a long way from the angry 10 year old whose behaviour frightened everyone. But he has so much potential, and I feel sick and sad at the idea that it may never be realised.

Somehow I have to find a way to face the daily dread of the response I get to that early morning knock on his bedroom door. 

Two more years of this to go....


How are you feeling about the return to school? What would you do in this situation?

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Sunday, 6 August 2017

Eating out with Autism

This may look like a pretty mundane photo to some, but to me it represents a huge achievement.

Beans sausage egg and bacon

Today we took Sasha to a cafe (in a garden centre!) for lunch. 

That sentence on its own is unusual enough; over the last few years we have rarely eaten out anywhere. There was one attempt at a Mothers Day lunch this year, but it was, to be frank, a disaster, and reminded me why we don't tend to frequent public places for eating. (see Mothers Day and Harry Potter studio tour for the story on that one!) 

So anyhow, back to today. It's not as simple as telling Sasha we are going out and just leaving the house at the right time. It involves a lot of preparation; talking through plans and making sure she has an idea of what we'll be doing, how long we'll be out for etc. I need to make sure that a device (or two) comes with us, charged and with a spare charger, and some cold water and snacks (her beloved pepperami sausages). 

There's never a guarantee that she'll eat any food out - she'll eat sandwiches at home but not if we take them out (I think this is something to do with the foil or plastic they may be wrapped in making them taste slightly different, or that they're just not as fresh once you've been out). So I make sure she's had her sandwiches before we leave the house. I know that sounds crazy when you are going out for lunch - but believe me, hunger is something which can send her off kilter sooner rather than later, so it's not worth the risk of going without. 

Waiting for anything is an aspect of life which seems to cause Sasha the most difficulties, so I had some concerns over the fact that we were a large group and ordering/serving food might take some time. Luckily, we were at the cafe before most other people arrived (early lunch always a must do for us) and so Sasha had her choice of seats (she tried a few) and settled down somewhere that she could see her DS screen. OK, so it sadly wasn't at the same table my parents and her cousins were eating at, but I knew how important it is for her to choose what's right for her and not what would suit everyone else. 

Eating out in a cafe

When we first arrived at the cafe, Sasha decided out of the blue that she would like to try a cooked English breakfast. I tried not to show any surprise, but instead rejoiced in the fact that the cafe not only did cooked breakfast at lunchtime, but also did a child's version of cooked breakfast. I was fairly sure it wouldn't get eaten (Sasha's variety of foods which she eats is pretty limited, she's eaten almost the same things for breakfast, lunch and tea for over 4 years now), but there was no way I would ever say no to her trying new food. 

When it turned up, she tried the beans straight away - a little too warm for her which probably didn't help, but at least some went in her mouth. Then she watched me spread butter on one piece of her toast and decided she wanted to spread the other half herself - then changed her mind and decided to eat half the toast dry, followed by the other half I'd already buttered. 

Now this is a girl who has got so fussy about her toast at home of late (too much butter, too little butter, too well toasted etc) that she has stopped eating it most days, and has never wanted toast anywhere we've been on holiday before, because it always tastes a little different. Again, I tried to pretend it was no big deal, as she carried on playing on her DS, and she switched to eating the full plate of chips which had come with the meal. Chips are one of Sasha's favourite foods, but generally only if they come from McDonalds or are oven chips cooked at home. So it was actually a big deal that she ate these ones with no complaint. 

I'd cut the bacon and sausage up for her to try, and she licked a piece of sausage on the end of my fork. It had been a little tough to cut so I wasn't holding out much hope, but I could see her thinking about it and then stretching for another lick, and then a wider mouth for a whole piece of sausage to go in - she actually enjoyed it! Hallelujah! 

One other achievement at the same time - Sasha agreed to try using her headphones so other diners wouldn't have to listen to her Pokemon game. We've tried to persuade her to do this many times before, but she's always complained of the headphones feeling too uncomfortable, so it's never been done. Today, she did it of her own accord 😍 

Apologies if you have found all this mega boring and you would call it nothing to write home about, but any small change in Sasha's diet is a small step forward for her and definitely something for us to celebrate. The icing on the cake for me was that I also got to sit and eat a meal out in relative peace, and we didn't need to leave in a hurry before the rest of our party was ready. Whoop!


Mummy Times Two

Spectrum Sunday

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