I took this photo of myself as I sat in the passenger side seat of our car this morning; while our daughter screamed. My husband was attempting to help her navigate the current problem she was experiencing and help her, and I sat there with my head pushing into my hand – staring out the window, numb.
Things have been hard lately. I am pretty sure I’ve been saying that for about 3 years if I’m totally honest. Having an autistic husband and two autistic girls puts me in the position of being able to educate, inform and raise acceptance. And I will tell you that autism expands my world and it broadens my thinking, because it does. But what I won’t tell you always is that it feels like I’m being pulled in diagonally opposite directions. That it feels like I am trying to be broken from two directions at the same time. I won’t tell you this though mostly because then I have to go into more detail and explain and most of the time – I just simply have no energy.
The pulling in two directions isn’t my child versus me, no. It’s not some battle I am having with my child. It’s all me actually. One half of me is giving up, throwing my hands into the air with utter despair and shouting “I DON’T KNOW WHAT TO DO! I GIVE UP!”. This half of me feels beaten, sad, emotionally void with nothing left to give. The other half of me however is the perky little birdie on my shoulder, annoying as all hell. It’s telling me I can keep trying, that it’s okay and that things will get better.
It’s a constant push/pull. C O N S T A NT .
It’s very hard for me lately to feel anything but desolate isolation and utter defeat. I’m pretty sure my child has screamed about 10 hours this week, in total. That’s over five days. She screams and flops onto the floor rolling around with her hands in her ears, I walk over & scoop her up in my arms and place her in her room (where she has her tools to self-regulate) to stop my other children being scared and frightened by her behaviour, she inevitably comes out again and we repeat the cycle until she finally calms herself and we can then problem solve together. All the while I am having to remain calm and keep myself together because I know she isn’t doing this by choice and I don’t need to burden her with my hurt or exasperation which she isn’t causing on purpose or with intent.
I feel beaten. I feel broken. I feel like I should be able to help her but yet she’s still screaming. We have small moments of calm but mostly it’s us trying to fumble our way through our lives with a tiny sense of normality and purpose and direction amidst all the chaos. And when there is calm, we are often pre-empting the next challenge – too scared to enjoy it. This isn’t even taking into account my other children’s needs that demand to be met or that of my own; or even that of my marriage.
I can so hear she’s struggling and I am constantly trying alongside my husband and our support team to find ways to make her life easier, and enable her to help herself and cope better. I don’t want to see her so upset, confused and overwhelmed. But I would be lying if I said that sometimes it gets to the point of irrationally not caring anymore and I fantasise about driving off. That’s when the stupid annoying birdie on my shoulder tells me to dig deeper, have a break and keep trying. And I do.
I’ve got to hope that things will get better. I know she’s young and she’ll learn how to self-regulate and won’t constantly dump all her problems in my lap. And I know some days will be absolutely crap and for me, sometimes it’s easier just to feel the feels and honour them… and then get back on track.
I feel like some days I am the most boring person ever. Complaining about how hard our lives are, how tired we are, how little time my husband and I actually get together and then when we do it’s mostly sitting in silence and not talking because we are so tired and run down from constantly talking, constantly trying to problem solve and come up with ideas that may help. I feel frail and fragile, like a spider’s web caught out in a storm with only remnants remaining afterwards but desperately still clinging on to what grounds me.
And then other days I have a fire in my belly, a rhythm to my step and I pound my way through my day leaving marked tracks so others can follow. In those days I am a warrior woman, fighting for my child, pushing as her advocate and making myself known. I won’t give up and I won’t be quiet.
But god, would I love some nothing.