Do you ever wish you could ‘switch off’ your child’s autism?

Sometimes I do.

When I just need to get bread and milk from the local supermarket and I’m tired, in a hurry and just want ‘in and out,’ I wish I could ‘switch off’ my child’s difficulties with the music, crowds, smells, his absolute NEED to see the lift and his inability to stay beside me safely. Just ten minutes without autism would make that task easier…for us both.

When he’s crying in pain and unable to communicate why or where it hurts. How frustrating and distressing that is for us both. I wish I could ‘switch off’ his communication difficulties just long enough for me to be able to understand and help him.

When I am attempting to make a packed lunch for a school trip and I’m in tears because ‘lunch’ to him means a hot meal and I know everything I make will be refused. Just a half hour meal with autism ‘switched off’ would be a blessing for me, but more so for him. I know he doesn’t want to be so rigid but he just can’t prevent it.

When there’s roadworks and I need to drive a different route. To watch his face screw up in disgust and confusion followed by the onset of tears and challenging behaviour is torture for us both. I wish we could ‘switch off’ autism, just during the journey, not forever.

When I need to get medication into him. Just one minute of autism ‘turned off’ would allow vital epilepsy medication to be swallowed so much easier. While things are improving it is often very challenging and distressing for everyone. Antibiotics leave us both traumatised.

Right now though more than anything I wish I could ‘switch off’ severe autism as we face a period of very challenging medical difficulties. My non verbal son has recently been diagnosed with a growing brain tumour. He needs multiple anaesthetic’s and a brain tumour biopsy followed by possible treatment that will be invasive, challenging and intensive. I want him better; he needs to get better. The alternative isn’t something anyone wants to think about. . The presence of autism complicates even the simplest of procedures and we don’t have the time to ‘mess about’ right now.

Time is not on our side so having three months of acclimatising to new surroundings isn’t an option. Printing visuals of all the doctors we need to see, making timetables of when they will be seen and watching videos of procedures before hand to prepare my son just aren’t options any longer. I can’t just say ‘I couldn’t get him out the car’ to his neurosurgeon when they have theatre all prepared and scheduled for a brain biopsy. When appointments suddenly need changed due to things progressing fast I can’t say to specialists ‘well it’s not on his timetable so he won’t cope.’ ‘Sorry he stayed awake all night again as usual last night so we need to sleep today’ just isn’t an option when there’s an MRI machine booked for yet another scan, or nurses waiting to run more tests. There’s no option to say ‘don’t worry about his meltdown. I’ll just sent out another appointment in six months and we’ll try again then’.

We haven’t got time to put any communication device in place for my non verbal child any more, not that he has taken to any in the last ten years anyway.

Medically we are facing a crisis and severe autism doesn’t ‘do’ crisis. My son doesn’t do ‘sudden change’ or even just ‘change’. He doesn’t cope with new people, new places, being touched, sitting still while people talk, having needles put in, waiting around in clinics, or even having a simple plaster on!

I fully accept and love my son, autism included. I’ve never had an issue with flapping, watching the same thing lots, communicating in his own unique way or even needing routine. In fact I’ve developed strategies, patience, and understanding and I really wouldn’t want him any other way.

But I would be lying if I didn’t say that right now, in the middle of medical difficulties that can not be ignored or delayed, I would not love to ‘turn off’ autism just for short periods of time to make things easier for him, and also for me.

Autism can be a blessing and it isn’t something I hate but it can also make life challenging and right now we have enough challenges to face treating his brain tumour and we could do without the struggle just to get him inside a new hospital or the inability to wait for his name to be called and the terrifying fact his autism means he can’t communicate when or where something even hurts.

I thought in the past I’d like little moments of being able to switch autism off but right now I’ve never wanted that ability more. Autism is making an already challenging situation so much harder, not just for me but for my son. I’m not wanting my son to be non autistic just less rigid, less anxious, less ‘stuck’ during a time when co-operation, flexibility and communication are vital.

99% of the time I have time to do what he needs to help him. Unfortunately right now we are living in that 1% and I can not even adequately express how much simpler things would be right now without the added issue of severe non verbal autism.

Have I ever wanted to switch autism off? Right now for my son’s sake…yes! Most of the medical staff treating him would probably agree with me too.

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14 thoughts on “Do you ever wish you could ‘switch off’ your child’s autism?

  1. Oh Miriam. My heart goes out to you. You and and your husband and your wonderful son and daughter have faced so many challenges. God bless you and keep you, every one of you.

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  2. That is one big pile on your plate. I’ve no answers, but I feel some of your pain. Same boat, different waters. My son is non-verbal, but with time, it’s gotten a little better with communication. I grew to understand his wants and needs and could anticipate and avoid problem areas. But pain? Pain always derails communication. And it’s medical emergencies that are the hardest to deal with.

    You have a lot to deal with. I’d tell you to hand a list of shopping that needs doing to a friend or family member, if it’s possible. People usually want to help. Asking is hard, but maybe taking a small amount off your pile will give you energy to deal with the bigger issues to hand.

    Sending hugs, warm thoughts, and positive outcomes. A fellow autism mom.

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  3. Oh my! I really feel for you any appointment is difficult but you have some real challenges ahead. Yes I know exactly what you mean about those moments when you could switch the severe autism off. Sending lots of love and positive thoughts. Hope all goes the best it possibly can 💙

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  4. That is so moving Miriam. I am so sorry to hear what you are all going through. Am praying that God will miraculously intervene where there seems to be no way, He will make it possible that your son will cope amazingly well with all the medical intervention coming your way. You are such an inspiration, please don’t despair.

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  5. When your child’s life is on the line you have to do something drastic. This includes restraints and seclusion to prepare for procedures like MRI and biopsies of a brain tumor. It also includes medicines and painful procedures for similar reasons,things fanatic “neuro diversity” people hate along with all those far-left “disability rights” groups that consider some medical procedures “abuse”. Autism does not have an off switch! Always do what is best for your child and to heck with the opinions of the “disability rights” crowd who do not understand NF seriousness.

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  6. Oh, my gosh – I am so sorry that you are going through all of this. I have been enjoying your blog for many years and am thinking of you and keeping you and your family in my prayers. Hugs from NYC! Warmly, Amy

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  7. I stumbled across your blog and haven’t been able to stop reading. I want so badly to pick your brain, as I myself am going through the diagnosis process with my one and only son at the current time. Thank you for sharing all you do, I will enjoy reading your blog for many many days to come.

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  8. Hi Miriam,
    I just stumbled upon you on Twitter and have followed. I was going to DM you but there was no option. I just wanted to say I’m so sorry to hear about your Son’s tumour and i understand just how terrified you must me feeling right now. My Son is Autistic (specifically PDA)has just turned 13 and has been in treatment for 3 years (chemotherapy since Nov 17) I found it impossible in the beginning. I couldn’t get my son to take his melatonin, it was incomprehensible that pretty soon it would be handfuls of tablets that would become the new norm. I found there was lots of supports generally for parents but none specifically for parents of kids with Autism. If you would like to chat or even if you’d like a heads up on some of the procedures – what to expect, so you can prepare your boy (in the way only you can) please get in touch. Wishing you all the best
    Lee xx

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      • Sorry Miriam, just seen this! I’ve been checking on Twitter to see how he’s doing. When he had his Mri I was thinking ‘please let him be early on the list’ so he didn’t have to go without food for long (always a problem for Dylan) Looks like hes doing great! Get in touch anytime and sending you love for now xx

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