The Rules. ?>

The Rules.

There are a lot of rules in our house. Everything must be done in a certain way. Things must be in certain places, at certain times. Certain words must be used, or not used.

We don’t make the rules. Autism does. If we don’t follow the rules, it takes hold of our beautiful, intelligent, funny daughter, and reduces her to a screaming, crying, mess.

My husband and I walk around on egg shells, constantly on edge. We snap and argue at each other, because we can’t fight with Autism. I get frustrated and angry at Milla, then hate myself, because I know it’s not her fault.

I don’t know if I’m strong enough. I know I don’t have the patience. I make so many mistakes. Sometimes I hate this life, and I’m terrified that it will always be like this.

It feels like we are alone, the three of us. Trapped in this crazy world, with it’s crazy rules. With a ticking time bomb, just waiting for an excuse to explode and take us all down.

Strong Enough.

 

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29 thoughts on “The Rules.

  1. It must be a huge stress for you all. Thank you and well done for being so honest. Huge hugs to you lovely girl, fantastic mum and to your awesome husband/dad xx

  2. You are stronger than you will ever know, and In those moments when your little girl is in your arms, remember what your fighting for. You can do this!!

  3. It can be so unbearably hard some days Jane, I really feel for you. There are rules about everything at our house – order of showering, where people sit, how to make the weetbix, when we can sing or dance, etc, etc. It can be tiring and like treading on eggshells but it has got a little easier for us over time as we are used to it now, in a way. The worst of it is how my son’s needs impact on his sisters – I feel bad for them that they can’t sing and dance whenever they want, for instance. Hugs to you, I hope the rules become less onerous in the future. xx
    Kirsty @ My Home Truths recently posted…While I’m Away…My Profile

  4. I remember the two years of therapy we went through with Mr. 10. It is one of the memories I wish to block out. Every day felt like a ticking time bomb if someone did one small thing to upset his daily routine or a random thing could set him in to meltdown mode.

    It does get better but I have no idea how we survived the first 6 years. It’s a blur. Just trudge on and most will fall into place.
    Vague recently posted…Flat Stanley TravelsMy Profile

  5. We have a nearly 4 year old son and are waiting to be referred to see if he has Autism and I could of written this myself!
    I have to follow “his” rules so we don’t set off an explosion and with 2 other little ones it is hard.
    The amount of guilt I have when I get angry at him when I know he can’t help how acts/feels it sends me to tears at night in bed, and the arguments daddy and I have as he still is learning about what sets him off and what doesn’t is shocking.
    I just keep thinking soon we will have answers and some peace :)

  6. Big Hugs.
    I cannot imagine how challenge your day to day life must be with all the rules Autism has brought into your life, but I am sure as time goes on and you learn more about Autism it will become easier and feel less like you are constantly on eggshells. You are all still so new to this prognosis and are still doing a lot of on the go learning. I wish I had a secret to Tell you that would make it all easier but it will with time.
    You have been incredibly strong this far and I think you are more than strong enough to get through this and it will become much easier.
    Biggest hugs to you Jane you are an incredible person, strong, brave and clever and the most amazing mum to your beautiful girl.
    Xoxo

  7. Sending you biggest hugs!!! We also have a family that has to tiptoe around (in our case chronic illness). No one understands what it is to be in a household who lives through these things day in and day out, unless they are also walking a similar journey. It is isolating and it is hard. I love your posts. I love that you let us walk your journey with you – making it easier for us to walk ours. The task is to let this make our relationships stronger… to not let the monster win. You are an amazing mum, Milla is so lucky to have you. Never doubt that :). Sending you the biggest (((hugs)))) xxx

  8. I just stumbled upon your blog and just read The Rules. I find it so refreshing that you could admit that sometimes you just hate the place you are in and the hand you have been dealt. I think it is so much healthier to have a day where you say those words and get it out of your system so that the next day you can be refreshed and do it all again. Sometime we are strong, sometimes we are weak, and sometimes we just need to slam it into CRUISE CONTROL and get through the day ! Thanks You Jane !

  9. I cannot even begin to imagine how hard that must be. I worked for many years as a case manager for families with children with disabilities and my heart goes out to you. The patience, love and enduring nature of parents with special needs children amazes me. You deserve the best support and funding the government and give. I hope this new scheme they’ve developed is as great as they say it is :)
    Caz (The Truth About Mummy) recently posted…Learning to like myself ……..My Profile

  10. I remember being completely run into the ground by my younger son’s routines when he was a baby. If something was done not the right way, all hell broke loose. Thankfully, he grew out of it, and while he might have Asperger’s which we’re now in the process of diagnosing, he is no longer driven by such strict rules.

    I hope this gets easier for you and that you get the support you need to deal with it. Big hugs…
    Dorothy recently posted…I used to be a home makerMy Profile

  11. While I don’t have much experience with autistic children, I do know what it’s like to have a child with a medical condition totally rule your household, and I know how hard that can be. It sounds like you’re doing a wonderful job – keep your chin up, and take care xo
    Lisa@Circle of Toast recently posted…Putting On My Complainy PantsMy Profile

  12. I have not experienced having an autistic child – I have only read a fair amount – and all I can say I that I will send love, hugs and positive energy because there is nothing else I can contribute that will help in any way !
    Have the best weekend that you can !
    Me
    Me recently posted…Things I Know About DepressionMy Profile

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