Sometimes you'll hear me say "Tough day for a small boy". There will be days where I will excuse us from all planned activities because Crazy is having a 'bad day'. Some meet this with confusion and wonder or even openly ask me, "but surely he'll be better if you just bring him out? Go anyway, it'll be a good distraction!". In the past I have buckled and tried to persevere with our plans only to be met with disaster. It always ends as a hard day all round and no fun for anybody, so if you hear this from me in future, please don't be offended when I don't bow to your persuasions. I know you mean well and you're disappointed but trust me when I say we're not up to it today.
Many of you will have seen Crazy on his good days, when we're out and about and joining in. He doesn't look Autistic? What should that look like? Before we did some research I had written it off as a potential diagnosis because, yes, he can look you in the eye. These days he can even ask you to play with him. If you're highly honoured you may even get a cuddle! A brief, but wonderful cuddle- I live for these moments. I had fallen for all of the myths surrounding Autism because my boy was sociable and he was communicating and he could look at me and understand me. Things, however, are not always as they seem.
So what does a bad day look like for us? Let's start with waking up. It usually starts with tears and 'oh dears' right from the start. From the minute he opens his eyes we can tell how he's going to be. If he is accompanied downstairs by 'Froggy and plug' his comforters (a musical frog and his dummy for those wondering) he is feeling anxious. If he gets out of bed at all that is. Sometimes he can't face it. He will hide and cry and not want to be talked to or touched or looked at and that is painful to see in such a young man. Assuming he makes it downstairs, he will refuse food. Almost all food, almost all day. Contrary to popular belief, he doesn't appear to notice hunger and would in fact starve himself. After some research, we don't seem to be alone here. Autism and food issues appear to go hand in hand and it is very worrying. He will park himself under his 'heavy cushion', with his tablet and zone out. I do not know if he hears me, chooses to ignore me or just doesn't understand me. On a good day I can say, "We're going to get into Mummy's car now and go to the park to feed the ducks!" and he will understand. On a bad day, if he responds at all it is only if I break it down, "Mummy's car now, go to park". The most likely response is "No car. No park" and more tears. On bad days he barely looks in my direction, never mind making eye contact. He exists in an alternate world, tentatively joined to this one and on these days I worry that he may break free and become lost. Lost in the repetitive movements, sounds and motions. Lost in the ease of solitude. I never stop trying to bring him back, for every hour he spends doing what makes him happy all by himself, the next will be spent trying to interact in any way I can catch his attention. If we do make it out, his anxiety increases. He is uncomfortable in his car seat restraints and fights every step of the way. If we walk, you'd be forgiven for thinking the touch of my palm on his burns like fire. He cannot hold my hand without falling to the ground as if in pain. He doesn't understand the dangers of the world and he runs, as fast as his legs will carry him, wherever we are. The pushchair poses the same uncomfortable harness, as do reins. Going anywhere is dangerous on these days. Every option is met with frustration and upset, even things he would ordinarily enjoy, such as cold water fountains on a hot day, are just too much for him to stand. He becomes terrified of every day occurrences and pushing forward just prolongs agony for him. If he speaks, he is a robot. The words are often simple, delayed and jumbled and he will often be stuck on repeat. You may find him alone, muttering to himself "we go now and... we go now and... we go now and..." and you will never know the mystery of what he is trying to convey. If you interrupt he is embarrassed, I've come to know now that when this is happening he isn't aware that he is speaking out loud. I can only imagine the confusion and chaos in his mind if this is his inner monologue. He sometimes approaches me for something and if I do not understand his first attempt he can become frustrated. Lately, he sometimes lashes out, a pinch, a head-butt. Whilst I always discipline violence I can't help but feel for him. I doubt I would have the self control to manage the feelings he is having to manage and at such a young age. But he must. He must learn, because he deserves the very best chance at 'normality'. On these days he goes to bed early, exhausted and usually still unable to sleep. Bedtime stories are unwelcome, bath time is yet another upset. He remains in bed, talking, shouting, crying. Trial and error has taught us he is best left alone until he drifts off, any intervention just prolongs the inevitable.
I am truly thankful that these bad days are few and far between lately. The good days far outweigh the bad and we live those days to the full. I try and make sure he doesn't miss out on life and the joys it can bring but we are now accepting of the limits on tougher days. If we retreat and do what we need to do to get through these days, we are likely to awake to a better one tomorrow. If we just accept it, to go with it rather than fight it, I feel more confident in helping him through the tougher times and whilst its hard to tell, I feel like he has more trust in me too.
So to those of you who have just accepted this and not questioned me further, I thank you. You have no idea of the burden of guilt I feel when I let people down and just hearing you say 'that's ok, it's no problem' is a weight off of my shoulders. To those that have pushed in the past, I get it. I probably would've and may have in the past- and I hope this goes some way to explaining just what a tough day can be like for us. We do want to see you and we will make it up to you, as soon as he's ready- please be patient, don't give up on us just yet! I promise we're trying... because the good days are too bloody brilliant not to. That funny, bright, loving boy comes back out to play and I see who he really is behind the storm clouds. Here's to the sunny days, illuminating the dark times