I don’t really dwell on the past, and I am never fully in the present mentally much as I am always thinking about the future. 

Nothing is ever straight forward when you have a child with special educational needs (SEN), there is always planning needed for even the most basic of things, for example, incontinence products. Every day I worry if Lyla’s nappies are getting too small, I know that it’s not a case of, they don’t fit now let’s get the next size up, I will need to book an appointment with an incontinence nurse which could be a few weeks to a few months down the line. Then I will need to trial bigger products to see what works before I will have any future orders fulfilled. This is just one of so many little things that I worry about on a daily basis and these small worries all add up and can often consume me.

I am extremely lucky that I have amazing support from friends and other SEN parents that I’ve met along our journey and I can discuss any of my worries with them. We discuss education, equipment, respite, new services but I find whenever we get on to discussing the future that it’s always so emotional and so we choose not to talk about it but inside it’s something that I think of daily… What will happen when I’m gone?

So, whilst I should be living in the moment and worrying about the here and now, I am already researching deputyship, wills in trust, who will make decisions on behalf of Lyla when I no longer can? Where will she live? And quite often I just hit a mental brick wall.

I walk around and I wonder where are all the Lylas? I very rarely come across adults that have the same needs as Lyla in the community and there seems to be so many services for children under 25 with autism but what help will she get as an adult? You see these horror stories in the paper about young adults with learning disabilities being secluded or mistreated and I try and convince myself that it’s only the bad examples that get media attention and there are probably 1,000 amazing support staff for every one bad experience but it’s still hard to shake the worry. To trust anyone.

I worry about the responsibility that will lay with Lyla’s younger sister and whether we should have had more siblings, so Talia didn’t feel like she had to always be there. At only six years old, I am so conscious about Talia becoming a young carer but she just naturally falls into the role as a helpful loving sister.  She gets Lyla’s outfits ready, fetches wipes, even feeds Lyla her ice cream on occasions because she wants to. To Talia she sees no different, this is the only sibling relationship that she has known. 

I may not always appear to be in the moment, I might forget someone’s name, to text back, to answer a phone message. But at this moment in time the worry lays heavy on my heart and I have developed anxiety as result of this. I truly hope that with time, and as Lyla gets older and gains new skills, that I will find peace with this, like I have with the other hurdles I’ve faced along our journey. But, as always, I do find comfort in sharing our story and knowing I am not alone.  

What makes you different, makes you beautiful

Scarlett x

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Photo credit My Beautiful Now Photography