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Friday, 25 August 2017

Real tears, real feelings

Real tears from Sasha at bedtime tonight. She sheds them so rarely and consequently they pull heavily on the heart strings when they come.



At first, the tears were about a red heart-shaped stress toy which we'd bought on our recent holiday in Blackpool. She had somehow made a small split in it a week or so ago, and then tonight she just couldn't stop herself from pulling it into pieces. So then she was upset because she knew we couldn't go back and get another one, and she'd really loved it. The temptation to fiddle is always strong though, and many things get destroyed unintentionally in our house. I asked whether she enjoyed tearing it apart or whether she knew even as she did it that it was a bad thing to be doing, but I think it's such an unconscious sensory need that she couldn't explain.

We managed to move on from that though and she began to tell me about a dream she'd had last night. It involved her old school, and her old classroom, and her meeting three new children who were starting there. 

At this point, I made the mistake of asking her if maybe that meant she would like to try going back into Year 6 in her old school in September after all. Foolish of me, it was late and no great time for a discussion, but I guess the pressure is getting to me. The pressure of knowing that the dreaded back to school date is fast approaching, and that answers will be wanted again about why she is unable to attend. I strangely half hope that she somehow might change her mind, that she might be willing to give it another go. In my heart though, I know that's not likely to happen. The reasons it hasn't worked are still there; she needs something else.

The tears flowed again as she admitted 'yes, I do miss it, but I know I had no friends there. And it's the forcing of work which I just can't cope with.' She carried on with 'on the outside it might seem OK but on the inside it's just not good for me.'

Then, as the tears carried on and I tried to calm her, she added 'I've been to see my dream school once and I really hope that I can go back again for a second time.'

How do I explain to her that the decision over that school is totally out of my hands? Sadly, it's in the hands of a panel of complete strangers who will just read the paperwork placed in front of them and make a decision without really knowing what that opportunity could do for our little girl. More importantly, without understanding what impact a negative response would have now on her already fragile mental health.

We are already in a tricky situation; I realised today that I have a huge challenge ahead of me as our youngest girl's peers return to their classroom. It is likely to be several weeks, if not months, before anything is now decided for Sasha, and in the meantime I can't put all my energy into making learning at home fun, as that could put any new school at a disadvantage from the outset. So for now it's a waiting game, and a boring one at that.

This is the kind of worry that many parents of children with special needs go through. How do we make it better, for us and for them?

Spectrum Sunday


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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




Bringing Us Together



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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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