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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