The stress of autism parenting

My two eldest children headed back to school today. After weeks of preparation and stress and lack of routine, it was finally back to normal life for my ASD kids.

Although we have done as much preparation as we can, I was still expecting the worst. Getting my kids back to school after a five and a half week hiatus is always a tough assignment.

As I posted on social media earlier today, from the moment I woke up I felt I was in an alternate universe or in an episode of The Twilight Zone:

FB Autism Post - www.myhometruths.com
My son woke up calm, cooperative and happy. There was no sign of the usual angst, stress and worry that traditionally accompanies the first day of school. All was well.

And I didn’t quite like it.

It’s not that I didn’t welcome the change. In fact it was rather awesome not having to follow the usual first day back routine on a very busy morning for us all. The routine normally goes like this:

  1. First we have the positive pep talk to get him in a better mood to face the day
  2. Then I comfort him as he inevitably succumbs to his worry and gives in to his tears
  3. I then reassure him that he has nothing to be ashamed of and that he is not a bother or a bad boy
  4. Next I use every ounce of my patience not to get annoyed at him for continuing to be sorry and sad
  5. Then I often resort to tough love to get him out the door and into the car
  6. Finally I find myself bribing him with a food or TV reward to get him out of the car and into the school grounds

It was fabulous not having to deal with all that angst and worry and shame this morning. It really was great.

However I could not relax, even though the signs were good and continued to be good throughout the day.

That seems to be the lot of the autism parent. Stress is a part of our lives. We’re either stressed because of what we ARE dealing with or stressed because of what we COULD be dealing with.

THE STRESS OF AUTISM PARENTING - www.myhometruths.com

From my experience, we are forever waiting and watching for the worst. Some examples include:

  • being on edge when we go out, always on the lookout for potential sensory triggers
  • being vigilant on social outings, monitoring the interactions between our child and others
  • being attuned to conflict at home, ever-ready to intervene in escalating situations between our kids

It really is an exhausting way to live.

Which is why, this morning, I found myself even more on edge than normal. Rather then reveling in the novelty of an easy morning, I kept waiting for it all to go horribly wrong.

And even though we got through the morning, I then spent the day with the phone next to me just in case. A good morning can often be the precursor to a challenging afternoon.

However the phone did not ring and my son came home all happy and proud of himself. He even agreed to unpack his schoolbag and even showed me a worksheet from the day.

I was in complete shock. Yet I still waited for the axe to fall.

And eventually it did, during the evening, as the culmination of the stress of the day manifested in a series of meltdowns before bed. It was always going to happen – it was always more a case of WHEN rather than IF.

But it would be nice to be able to take things as they come and to have the freedom to relax and truly enjoy the good moments, without the constant worry of what might happen next to spoil the moment.

It’s almost as if I can no longer relax or drop my guard. Living with special needs for nearly 12 years now has somehow changed the way I think and react. I’m always steeling myself for what comes next, preparing myself to manage and mitigate the next meltdown, upset or issue.

It’s not the healthiest way to live but, after 12 years, at least I can see it for what it is.

I have no magic bullet to fix this (don’t worry I would not keep it to myself if I did!) but I guess I wanted to share the constant and underlying stress of autism parenting.

Can you relate? And do you have the elusive magic bullet to fix it?

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18 Responses

  1. Kim says:

    Very well said. It’s exactly the way we live our lives. It’s exhausting. You are either going through th upset, waiting for the upset or trying to calm down from an upset so its hard to enjoy many things.

  2. That must get exhausting. I’m glad he had a good first day though- may it be the first of many.

  3. I can only imagine as a mum of six, how trying this would be. Hopefully your son has reached a new level of maturity that will change his direction for you all.
    Good luck and you are doing a fabulous job. X
    Jody at Six Little Hearts recently posted..Babymel Grace Review – WIN A Stunning Nappy Bag Plus an Exclusive Discount Offer! #SLHFeaturedThursdays

  4. Jody (above) said what I was thinking. Maybe he has reached a new level of coping. Fingers crossed. This is a good perspective for me to read, Kirsty. I’ve taught many kids with ASD over the years and it thrills me when their parents tell me they now love coming to school. They often comment that their kids are stressed when they get home though because maintaining an even emotional state all day has taken its toll on them. I’m sure with each passing year he’ll become an expert. x

  5. Oh, I feel for you, it’s so tiring being on edge all the time, as you say. And then of course, the more stressed you feel, the more it can enter the atmosphere and stress everyone else in the house out, it’s like a vicious circle. You do such an awesome, amazing, wonderful job, as evidenced by the wonderful first day of school – and I have to say your morning routine, though I’m sure it takes a lot of energy from you, sounds like a pretty reasonable one!

  6. I can imagine it would be exhausting – high five to you mumma! At least, on the up side, he had a good day, Here’s hoping there are mnay more!

  7. Alicia says:

    I’d be stressed some mornings if mine went off well, that there would still be a phone call to say that he had lost the plot and I would have to come get him. At 23 I still worry about his future. It is stressful. It is trying, and worrying. It is hard to hold on to the times that are good, without getting too bogged down about the times that are bad. Remember to look after you xx
    Alicia recently posted..BeB the sign painter

  8. Parenting is stressful enough as it is, you are a supermum 🙂 Hope you get some more good days.
    Emma @ Life, kids and a glass of red recently posted..You have to laugh…

  9. Trish says:

    You are doing a wonderful job Kirsty . I can’t say how I’d deal with it and certainly not with the patience of you. I hope the days get easy and he keeps rolling along at a steady pace.
    Trish recently posted..I’m with Cupid.

  10. That must be so tough and a real strain on your well being but I guess we just cope with what life throws at us. Call it a survival mechanism! Like when my mum died, I couldn’t fathom living through it but I did and I have. You are doing an amazing job in difficult circumstances made easier by the fact that you love your son and you just have to. He’s lucky to have you. Hugs to you Kirsty. x
    Haidee@Maybe Baby Brothers recently posted..Why I Have To Quit The Booze

  11. Chrissie says:

    Having worked with families & children with a challenging behaviour for the past 14 years, I just want to say that I understand what you deal with on a daily basis! Your child is SO lucky to have such an amazingly positive, supportive & attuned mother xx

  12. I’m so glad to hear he had a good first day. It must be so exhausting to always be thinking ahead like that. But it sounds like you are doing an amazing job. Xx

  13. Grace says:

    Oh, Kirsty…I can’t begin to imagine how exhausting it must be for you. I have no magic bullet…only to say, you’re doing an incredible job. Truly x
    Grace recently posted..FYBF – Sliding Doors

  14. Mel Roworth says:

    My husband thinks I’m just negative, maybe he’s right. My son is not fully diagnosed yet and we don’t think it is autism but he does have some common behavioral traits.
    Learning the different sensory triggers and figuring out how to calm him in different situations has me on knife’s edge.
    And yes, calm is unnerving!

  15. I have four kids and my eldest son has autism. One year he went by himself to stay with his grandparents for a few days and it was only then that I realised how less stressed I felt. It was markedly different. I was always on constant alert when we were out to make sure he wasn’t bumping into people or getting into arguments etc. It’s got a lot easier as he’s got older as he’s much more in control of himself and has become less reactionary. He’s 15 now. I hope you have a good way to de stress…x #SpectrumSunday

  16. Thanks for sharing – this gives a great insight 🙂 We are currently dealing with a few difficulties before school, my daughter is asking to go back to Pre School every morning as she’s now at what she refers to as “big school,” this morning she ran out into the road by our house, I have to constantly watch for any triggers that she displays

  17. Tina says:

    Enjoyed this. I know what it feels like to be stressed stressing about potential stress and that there appears to be an absence of stress! I often get asked by friends ‘is everything ok?’ And when I reply ‘yes’ there seems to be an expectation that I shouldn’t be stressed!

    #spectrumsunday

  18. No magic bullet, live on love, routine and a lot of patience. Thanks so much for all your great insight on #soectrumsunday
    Rainbowsaretoobeautiful recently posted..Autumn’s coming kids craft activity – motor skills development

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