Autism Parenting

The Game Changer They Call Autism

The Game Changer They Call AutismI wrote recently about the signs of being a high functioning autism parent. To be honest I toned it down a little, because I don’t want to be writing all the time about the negatives. I genuinely try and look on the brighter side of life, even when it’s really hard to do so.

Some days though – when I’ve been tripled teamed by the kidlets and have only had a couple of hours sleep like last night – it’s hard to be super positive. After all I’m only human, and I have my limits. One of the comments I had on my last post made me stop in my tracks. 

“Surely most of this list is just par for the course with young children?”

Indeed it is. 

Let’s face it, babies and toddlers aren’t wee for long. In fact it feels like you’ve blinked and you’re already packing that cute little bundle of joy off to school (or gearing up for home ed in our case). Even the rattiest baby, most terrible two year old, and tiresome threenager will only test your patience for a few years. Most folk will actually site starting school as the turning point for their challenging child.    

Meltdowns

When you have autism to contend with, the toddler-like meltdowns will continue well into their childhood. Over time us parents become more and more familiar with the triggers, and we can try and avert them as best we can, but even with the best will in the world they will still get overwhelmed with life and go into meltdown mode. For my 6yo they have become quite violent during the course of this last year or so.

She has been known to throw furniture around the room, hit, kick, punch. She has thrown hard objects at me when I’m in the kitchen, which is dangerous on so many levels. Once she was getting ready to throw a pair of scissors at my head, but I managed to intercept her and take them off her. If a meltdown has gone past the aversion stage, the only thing we can do is take the little ones out of the room and try our best to talk her down. The process can take an hour, even longer, and leaves the entire family in a state of shock. Trust me it makes a 2yo throwing themselves on the floor and flailing their arms and legs truly laughable. 

School

When you have autism to contend with, chances are a regular school will exacerbate their issues. For my girl it highlighted how different she was from her peers, and far from being the turning point, it made all our lives tougher. Which is what led us to the decision to start home educating, and I’m pleased to say that the daily meltdowns have stopped.   

Sleep

When you have autism to contend with, chances are your child isn’t great in the sleeping department. My friend once said to me that she has known lots of people with older kids to have experienced sleep problems in the past, but by the time they reach five or six it’s all a distant memory. Between the ‘magic cure’ of school, and the maturity of the pituitary gland, it certainly does seem that most sleep disorders (including bed wetting) in neurotypical children are grown out of by this age. 

I was having a chat with P last weekend, and she told me that her mind felt like the drawing of Mr. Messy before he has a bath. She finds it incredibly difficult to switch her thoughts off, and although we have come a long way in the second half of this year with her sleep, it’s still not good. She might sleep all night once or twice a week, but she refuses to go to the toilet on her own. She always needs help getting back to sleep when she’s had a bad dream (at least a few times a week). Some nights she goes to bed just fine, others she will cause merry hell along the way and prevent me from getting my 21mo to bed. This means I have to do the girls bedtime first, and it then knocks onto getting the boy to sleep. The witching hour often leaves me good for nothing but staring into space afterwards.  

duck feeding NOV15Siblings 

In my darkest moments, I wonder whether I would have had two more children had I known that P was autistic. It’s easy to say no, but I don’t honestly think that would have even been true. I never wanted an only child, in fact I always wanted four kids. I have always loved the idea of a big family, possibly because I am completely estranged from mine.

I feel so awful for the little ones though, because in order to keep the peace throughout the day, most of my energy goes into P. Essentially it’s a trickle down effect, when she’s happy the whole family is. When she’s walking around pinching and name calling it distresses everyone. My 3yo has been reduced to meltdown mode herself, on many occasions, because she just can’t cope with the cruelness a second longer.

On home ed

We are in the earliest days of our home ed journey, and are very much still going through the process of de-schooling. I’ve had the odd day where it’s felt like we’re winning, but mostly I’m feeling that it’s a massive risk. What if we’ve made the biggest faux pas of our parenting career? What if we don’t get her onto a level playing field and this is it forever?

Must. Stay. Positive!

We will continue making progress, I know we will.         

This is why autism is such a game changer, because there is no end in sight for the ground hog day like challenges. We can only hope that with enough love and positive parenting they become less evident in our daily lives. 

 

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mummytries

Full time wife and mummy to three, home educator, blogger, wannabee chef and published author. Follow me on my journey through life...

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17 Comments

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  2. Thanks hon. It’s been a really rough week, and we are not in a good place. Thanks for the strength, need as much of that as I can get xxx

  3. Oh Kate, my heart sank as I read this comment! It’s all so familiar, even down to the sugar reaction (which I swear most people think I’m being ott about). All I can say is that I had an absolutely horrendous day yesterday, but in stark contrast today was lovely. Don’t lose hope that brighter times are ahead. Once you get a diagnosis it will more than likely make you feel a lot better – certainly did us anyway. Wishing you so much luck xx

  4. What another great post. We have no diagnosis for my son and are waiting to be seen. Today has involved two hours or crying over him wanting to buy a Kinder Egg (that would make him crazy because of the reaction he has to sugar). I am trying to stand my ground because his tantrums have got so much worse but he hit me, kicked me, screamed, you name it. I feel totally wasted tonight and have to sit down and work. My 19 month old has been ill all day but he has just been on the sidelines whilst I negotiate with my little disrupter. I find it hard to be positive when I am in deep – then he’s also so gentle and sees life through some special eyes. Ill be interested to follow your home schooling journey because I’m not sure mine will settle in next year – but to be honest i am not sure I can cope with him full time either. I love your blog – it makes me feel more normal.

  5. Oh Renee I can’t imagine how hard it is. Three kids too?! I can barely deal with two! And poor P. I can’t imagine feeling like Mr Jelly before he has a bath…that is just so cute and sad at the same time. Sending you lots of strength xxx

  6. You’ve totally hit the nail on the head there Jodi! Sharing and hearing about other’s stories that have been in similar situations is always helpful! Thanks again 🙂

  7. Thanks Renee.

    Yes lovely cousin … Terena is an original but a goodie 🙂

    Thanks for reading. I didn’t know what I could share that may assist, in any ones journey but for me … even just chatting with another Mum that has experienced & understanding the home schooling pressures as well as the Autistic behaviours / learning / parent scope is helpful especially in times of self-doubt.

    Thanks for sharing on your blog 🙂
    Jodi {Aussieland} Australia 🙂

  8. When I read your comment yesterday it left me with tears in my eyes Jo, thank you for your kind words! It’s certainly not been an easy ride, but those moments when everything is going smoothly makes it all worth while. We’re taking the home ed very slowly certainly until Xmas, but I’m looking forward to properly getting into it all in the new year 🙂

  9. Thanks Maddy, that means such a lot! It would be fab if you were closer wouldn’t it xxx

  10. Oh you are so so kind Denise, thanks as always for your lovely words, I really hope you’re right! C did start pre-school in Sept but absolutely hated it, so we made the decision to de-register them both. We’ve applied for a school place for her for next Sept to keep our options open. For now our priority is getting the girls to get along better, which they already are doing. Progress is definitely being made, albeit slowly!

  11. S sounds like a gorgeous little boy Tracy! I can’t let myself think about the future at all, because once my mind starts wandering down that road it’s a really slippery slope. My way of thinking is that if I focus on right now, and we continue making progress (no matter how slow) then the future will be bright by default. Those hugs are amazing aren’t they xx

  12. Wow Jodi, what a journey you’ve had! I’m so pleased to hear that it’s all working out for you at home. The temptation to pile the pressure onto our own shoulders is immense, and it’s so easy to get caught up in what everyone else is doing and what we think we ‘should’ be doing. Parenting is a journey with autism or without it, and we learn as we go on. Thanks so much for your gorgeous comment! You have a lovely cousin btw x

  13. Hiya Renee,

    I was told about your blog site by my cousin Terena.

    I am a sole parent that is on the journey of Aspergers Syndrome, ADHD, Asthma & Anaphylaxis / Allergies with my 11 year old son Connor. I decided to pull my 11 year old son from Mainstream schooling in Australia last year. We are linked with Australian Christian College or doing the home schooling program through them. We are not a particularly religious family but this school did testing BEFORE allocating work for my son. Also the booklets are of a level that my son can work through. The 1st time he finshed one he had this studded look on his face “I did it” was his comment.

    For quite a while I was soo stressed that I had made a mistake. It took alot of self belief to make the break from the traditional forms of schooling. We had tried 3 different schools & previous a Distance Education program. They didn’t work for us.

    Previously in one of the mainstream schools my son attended during my 1st ever parent teacher interview I was advised that maybe I needed to lower my expectations in what my son is able to do. I am so glad I didn’t live to that advice. My son had his 1st report card back & achieved straight A’s in Maths, English, Science & Social Studies.

    It has been an extremely difficult road & along the way of our home schooling journey it has been pointed out that I myself may have Aspergers Syndrome. Getting myself & my son organised into a routine was overwhelming at times. But I have to say that the steps we have decided on are working well for us now.

    I suppose what I took the long way around to explain via this comment is … to try to not put too much pressure on yourself as the homeschooling journey has just begun. I wanted to share that although it has not been easy for myself or my son 🙁 in time it got better & is currently working well for us.

    I wish you well on your homeschooling Journey 🙂

  14. Great post!
    Positivity is important when it comes to autism but we also need to have moments when we allow the negative stuff to be released. The worries of the future are never far from my mind but I try to remind myself to deal with the present because this may be as good as it gets while I have relative control. Mr Fuzzy is a perfect way to describe the autistic mind when it’s overloaded. I very much see myself like that along with my one remaining marble lol
    My little boy is also six and incredibly strong so I understand what you are talking about. The great thing is that I get big strong hugs that take my breath away. 🙂 X

  15. Everyone should read this post, it describes so well what it’s like to be inside a family affected by autism. I think one glimmer of hope is the way that Polly can articulate what it’s like to be in her mind, and I think that her being able to express this is something that must have come about because of the way you are an open, positive and encouraging parent. I hope that as time goes by, P will be able to develop that override mechanism to help her cope with the outside world. It just takes much longer for autistic children to be able to manage that.
    I think the home schooling has to be a step forwards. Is there a pre-school nearby for C in order to give you all a bit more space?

  16. I’ve been thinking about you lots recently and been wondering how the home ed is going. You’ve got such a lot on your plate and when you consider that the last six months or so has involved an autism diagnosis, redundancy and decision to home educate then I’m amazed at how brilliantly you’re coping. What you deal with on a daily basis isn’t just par for the course, especially when I’m sure there’s more you don’t share, but it’s impossible to read your blog and not be impressed by you. Not sure where this comment is going… just wish I lived nearer and we could meet more often! xxx

  17. I know you probably don’t want to hear this but I am full of admiration for you and your family. I have no idea how I would cope with half the things you deal with, yet I know if my son had been autistic I’d have coped some how. Children all have their moments and that’s natural. But you seem to have 23 hours of moments every day! Your devotion to your family shines through in your blog and I love to read what you’ve all been up to. I look forward to reading about your adventures in home schooling, the fun you have with it and the challenges. As an ex-teacher I’ll be fascinated to hear how you get on.

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