As the summer holidays draws to an end, I hope like myself you have been able to make many magical memories with your children.  With having such a long periods of time off school due to the pandemic, I must admit this break felt much nicer, it was official, we knew where we stood, we weren’t just placed in isolation.  This is our regular allotted time where the kids can be kids, have lazy mornings and no classrooms.

Although there was a distinct lack of sunshine, I do really enjoy the extra days where I can take the kids to nice places and enrich their lives with experience and fun is one of my favourite things to do. Taking my complex needs daughter anywhere always takes a considerable amount of planning, its not dissimilar to when you have to pack to leave the house with a new born.  If they want something and you have forgotten it, then its game over. There isn’t a conversation you can have with my daughter to say “no we don’t have cakes at the minute, so you will have to wait till later”- if she wants something at any particular time and you don’t have it, then that’s the day done for.  Activities can always be a bit hit and miss, some things I am completely sure she will enjoy, so operation plan and pack accordingly gets executed, you normally have some kind of excessive drive as things that are suitable don’t tend to be right on your doorstep. You have given it your all to make this moment happen and something isn’t right.

As a low verbal child Scarlett can’t communicate exactly what that is, but she can certainly express that she is distressed and despite any attempts to try and appease her, that’s it, decision made, days over and you retreat back to the manageable comfort of your home.  The protective bubble where no one stares if she screams, where you have to hand pretty much anything she requires and where you can have a cry without an audience.

We exist in a world that caters for the neurotypical, so it is completely understandable, I believe, that the neurodiverse members of society can easily slip into the realms for want of a better word- neurotic.

I revisited an old blog that I wrote specifically in reference to the challenges faced during the school holidays. The Frustration of Scarlett’s Frustration, I must admit I didn’t think I’d still be in this exact same situation now, but if anything, with even greater challenges and a far more assertive and vocal young lady to try to make happy.  I thought maybe I would have it nailed now, that I would be able to glide effortlessly, knowing exactly what to do and when.

As a parent it is tremendously difficult to feel like you aren’t getting things right, you are not giving your child the best life, that no matter how much planning and effort you put into something, there is no guarantees.  I hate that I outwardly project how all consumed I am with anxiety at never feeling like I can’t keep up with her demands,  I hate that my sighted child has to take some of the weight of her care, because I physically can’t get her everything she needs single handily.  I hate feeling like as a single parent I don’t have an partner to lean on, or that I feel like people intentionally don’t invite us places as they don’t want to have to deal with Scarlett’s disdain or to see me brimming with stress trying to just make her happy.

I have never shied away from trying to give Scarlett a vast experience of the joy that the world offers.  I have continually strived to fill her world with as much music as possible!  It isn’t an easy feat, and I’m not seeking any kind of adoration for this, it is what we do as parents.  But to lump an extended amount of time away from having all the support that the school environment offers and expecting happy parents and happy kids at the end of it, is just setting up for failure.

Who has had time to recharge?  Who has been able to fill up that empty cup? How are we supposed to be able to help our child thrive, when we are just trying to survive?

Apart from having my soapbox here in this post, it does present a very important question- why are complex children still following a traditional academic term times?

I asked this question tonight in the VICTA Parent Network (the dedicated parents support group), if anyone else felt the same, and there was a consensus.  So if that’s the case why hasn’t this been looked at more closely. I don’t stand alone in these feelings, and I am not the only parent who can claim the ‘I survived the summer holidays’ badge. I’m not the only strung out wreck, plagued with negative self talk whilst being eaten alive by anxiety.  If, like myself many parents are feeling like they are ‘hanging on in there’, then why isn’t this addressed.  These long breaks for my daughter take so much time for her to heal from.  That when she does return to school it eats into her education.  The staff have to start from scratch getting her used to the formal routine of the school day.  Surely this period of adjustment must have a detrimental effect on the ways in which schools operate.

So with that being said, why are things still the way they are?