THE AUTISM DIARIES | THE UPS & THE DOWNS

I haven’t written about Autism in such a long time. Partly because it’s just been too personal, but partly because there’s been so much going on in regards to appointments & assessments, that we’ve needed time to get our head around things.

This is why I wanted to start writing my Autism Diaries. To talk more about the real feelings behind dealing with Autism. The ups & the downs. How it affects Archie & our family rather than just about Autism itself.

The past few months have been really hard on the four of us. With Archie starting his assessment nursery place at a Special Needs school. We knew mainstream school just wasn’t an option for him, but he’s not guaranteed a place at the same school in September, which is a worry.

The school has been amazing for him and his progress but it’s also been super stressful too. There’s been so many appointments with different specialists, from the Educational Psychologist to the Behavioural Psychologist. Speech Therapy to Paediatrician appointments. Parent assessments & dietitians, doctors appointments & hospital visits.

It’s so hard when you have to talk about the negatives so much. We need to talk about the negatives, about Archie’s issues & developmental delays because this is how it’s determined how much support he needs at school, and which school could best meet his needs.

But it’s hard work. It’s physically and emotionally draining having to go through all these appointments. Talking about your day to day life and the struggles you all face, especially when you have to do it on next to no sleep and you’re already stressed and emotional.

But it’s even harder hearing about Archie’s issues from professionals. It makes it all the more real.

Then you get asked how you’re coping.

No parent wants to say they are struggling or can’t cope. Unless you’re one of those seriously funny parenting bloggers joking about how the kids are driving you to drink or wrecking your house.

But when you’re a Special Needs Mama it’s not something you can, or want to make fun of.

It might be funny when other bloggers write about that one time their kids pee’d on the new rug. But it’s not funny when they pee on the floor, on their toys, in the toy box, all over the furniture. It doesn’t raise a laugh when you have to replace your couch because it’s smeared in poo & is pee soaked. It’s not funny because he can’t help it. He doesn’t know. It’s just sensory seeking for him.

You can tell him no, and not to do it but it doesn’t matter, he’ll still do it anyway. As soon as your back is turned, the nappy will be off. “Well don’t leave him alone” some people will say. But I have to cook food for him, I have to go to the loo myself. That minute or so your back is turned is more than enough time for chaos.

Other mums can have a little moan about their little one being up half the night, and that’s ok, but no-one wants to hear it when it’s every night. When you’re barely getting enough sleep to function.

Just thinking those words, I can’t cope, brings all the mum guilt.

My boy is amazing. He’s beautiful. I absolutely adore every single part of him. But its hard work.

Autism & Additional Needs brings so much extra work with it. It make the days and the nights so much longer harder. It all merges into one, and sometimes it can feel like you’re just getting through it, day by day. I hate moaning about how hard things are because this is our life, this is the way things are.

I’m his carer, his provider, his fighter, his advocate. I am and always will be everything he needs me to be.

But some days I am tired & I do struggle. I’m just taking each day, and night, as it comes. I have the biggest, darkest eye bags. I have about an inch worth of grey hairs poking through. I’m far too emotional & far too stressed.

But like so many parents coping, I am getting through the day, and I’m raising a little super star. So I guess I must be doing something right.

Cuddle Fairy
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18 Comments

  1. March 15, 2017 / 8:25 pm

    I am not a parent yet and probably can not even begin to imagine what you guys are going through but as you said you’re doing your best raising a superstar. Hang in there!!
    Anosa recently posted…5 Must Have Weekender BagsMy Profile

  2. March 15, 2017 / 8:52 pm

    It’s ok to be tired hun, it’s ok to be stressed. You are doing your very best for that gorgeous little boy and that’s all that matters! You are an amazing Mum xx

  3. March 15, 2017 / 9:29 pm

    I often think those words “I can’t cope” especially when my hubby is away with work. Our 3 yo is going through what must be a monumental development phase but its draining the very core of me. Parenthood is more difficult and tiring than I imagined but it must be doubly so for you and other parents whose children have autism. I have a friend with 2 boys with autism and she is a superstar in my eyes. They’re both gorgeous and thriving and doing well in school. I hope you manage to secure the school place you need for your son. I know it’s a worry as my friend went through it last August with her youngest. Got my fingers crossed for you all.
    Cath – BattleMum recently posted…Living Arrows 11/52My Profile

  4. March 16, 2017 / 10:39 am

    You are doing a great job for you son. I have never been trough this with my children so I can’t imagine how stressful and tiring it must be for you all. I can imagine all the appointments being stressful. 🙁

  5. March 16, 2017 / 4:29 pm

    Parenthood is tough the best of times throwing an extra need in there like Autism and I can’t imagine the extra worry, stress and work involved in making sure your little person is looked after.
    I hope you are able to grab 5 minutes for some you time! You are doing a fab job! Keep it up xx

  6. March 16, 2017 / 7:33 pm

    You have a beautiful boy and are doing amazingly, my newphew and cousin have atisim and it is tough, but all you can do is support and love them x
    Lindsey recently posted…Smoothie BowlMy Profile

  7. March 16, 2017 / 7:49 pm

    Oh hun I want to reach out and send you a giant blog hug. My kids don’t have special needs but the impact of their early life pre-adoption has left its mark. I really empathise. Stay strong lovely. #bloggerclubuk

  8. March 21, 2017 / 9:45 am

    You are doing brilliantly. Just take every day as it comes and 3 deep breaths when things get tough! #twinklytuesday

  9. March 27, 2017 / 11:09 am

    I think you are incredible. This is such an honest post and very brave of you to write. You are a wonderful mama. Thanks for linking up with #TwinklyTuesday

  10. Anonymous Asperger's Autism Sufferer
    April 2, 2017 / 4:33 am

    I have Asperger’s autism… take it from me, by wrapping the lad in cotton wool – you are making life harder for him in the long run.

    A vague example would be, when I was a child, woollen jumpers would make me itch like crazy. So one day, I wore one with no T-shirt, and I got used to it.

    By putting ear defenders on his head… you are making him more sensitive to loud noises, because you are putting him into his own silent bubble.
    Which makes noises bother him even more, when he does not have them on.
    What you are doing, is making it so that he will have to wear those unsightly things all his life… (industrial level protection) and be mocked by others, which in turn will cause him another world of stress.

    Things you “mums of kids with autism” do not seem to realise, is that when your children are adults, they will still have autism.
    It is not something which only affects children.

    I believed it was something which only affects children, so I never bothered to look into it, until I returned to college at the age f 32.
    I thought that, because of the way the subject of autism – is portrayed by mothers of children with autism.

    He is a person. Just like other people, he can, and he would, get used to things…
    and yes this would seem to mean “he will grow out of it” would be accurate in some way.
    Which is one of the things, which you refuse to accept as a fact, and you outline it as something never to say to a mother of a child who suffers from autism.

    Let me give you a clue about what he might be experiencing…
    Having Asperger’s – is like being “Rain-man” part time!

    Rumination. Caused by excessive amounts of electrical activity within the brain.

    To Desensitise, one MUST learn to endure. Just like any other person!

  11. Anonymous Asperger's Autism Sufferer
    April 2, 2017 / 4:51 am

    P.S. He is not ignoring you when he repeats the thing you told him not to do… like the messy stuff you speak of.
    He simply keeps on getting the same thought process, which triggered the action the first time.

    To break this “habitual form of rumination” as I would put it…
    you must catch him doing or about to do the bad thing, and help him to change the thought process,
    with something positive as a substitute for the bad action.

    Hope this helps.

  12. Anonymous Asperger's Autism Sufferer
    April 2, 2017 / 5:04 am

    P.S.2. You can raise a child, or you can raise an adult. Don’t turn him into a 30 year old boy.
    Learn to accept the stuff which people say to mothers of children with autism.
    Some of it will help. Because it comes from society.

    Blog about it, make headline news (where I found you), and dismiss the help within the harshness…
    And you will raise a man child, incapable of fending for himself, in today’s society.

    Honestly.

  13. Eileen
    April 2, 2017 / 11:53 am

    I know about raising autistic children. I’ve got at least two on the spectrum. You do your best. Follow your own star. You’ll know when it’s time to be a bit more demanding. To critics I say “Where were you when I needed help?” “Where were you when the nappies needed changing?”

    • anon
      April 2, 2017 / 3:51 pm

      “I know about raising autistic children” yea, that’s the problem, that is why you needed help… because you are raising “autistic children”, you need to raise adults who know how to be mindful about their condition. So you need to treat them as adults from the start.

  14. Eileen
    April 2, 2017 / 5:23 pm

    You’re making assumptions and being a wee bit judgemental. That’s what we get from the nt professionals.

    • Anonymous guy with Asperger's
      April 3, 2017 / 1:21 am

      Quote “You’re making assumptions and being a wee bit judgemental. That’s what we get from the nt professionals.” EILEEN @ April 2, 2017 / 5:23 pm

      Sorry if that is how I came across to you.

      I was just replying to your words, as I read them, in a literal sense. If you feel that I was being rude or abrasive in any way, then perhaps you would provide more context when you make such loose statements. So that people do not conceptualise with them in a wrong or unintended way.

      Now, I have to say that I feel that you were the one making assumptions and being judgemental here. And after what I just said about loose statements, I can’t really make such a statement myself, without providing some context, and so I will elaborate on my meaning…

      First, you assumed that I was being judgemental, when I was simply trying to point out, that if you treat a person who has autism, as a “child” and wrap them in a protective blanket (such as industrial ear protectors) then you will make things harder for them in the long run (i.e. make them more sensitive to loud noises). There is a difference between a self-taught, learned or adopted way of dealing with things (A “coping mechanism” as people call it) and a sheet of bubble wrap provided by mum.

      For example, imagine being 25 to 30 years old, and living alone, when you start to realise for the first time that your behaviour is not exactly normal. One might think that they are experiencing some form of mental breakdown. One may also come to believe that they are going crazy and become afraid to talk about the things which they experience. Only by being well informed, aware, and mindful of what someone might experience during a phase of ‘anxiety driven autistic regression’ – only then can they understand, and begin to feel less anxious about what is going on. Rather than regressing further.

      Also, imagine that during that phase of autistic regression, one might randomly and repetitively ruminate over things from their childhood. Perhaps they might suddenly say things like “I want to go home” or “Can I have an apple?” whilst sitting in a room or whilst walking, alone. And then wonder why they just said it. They might even do it in the presence of others, and feel a great deal of embarrassment, driving them to spend even more time locked away and alone.

      The point I am trying to make, is that it might very well be better for someone who has autism, to start as they mean to go on. And not to begin life, in a fairy-tale world, full of rainbows, soft toys and all about mum. Because that is not what life is like for any adult. I am not suggesting that you deprive someone of their childhood… but some things which would be ok for a normal person, might better be missed for someone who has autism.

      Please notice too, that I do not refer to someone who has or suffers from autism, as “autistic”. Because they are a person who has/suffers from autism, they are not an autistic. Referring to a person as “autistic” is a little derogatory in my opinion, as it suggests that autism is all that you see when you look at the person. The word “autistic” should only be used to refer to the effects of the condition. Such as “autistic regression”. I have Asperger’s autism, but I am not Asperger’s autism.

      I am personally glad that I did not find out about autism until I was an adult, because this is the sort of thing my mother would have done, and I would not have appreciated it at all. In fact I would feel greatly embraced by the way I would have been portrayed. I haven’t even given my real email address here, because I value my privacy, and I would rather maintain it.

      Rather than write a blog and talk to newspapers, to try and raise autism awareness, perhaps you could spend the time, teaching your children to be mindful, then, when they are older, if they would like to have their lives, messy struggles and all – documented online for all to see, then they could write a blog themselves. My opinion, sorry if it offends, is that mother’s posting things like this online, kind of robs their children of their unfound liberty. But if it makes headline news and raises awareness, (even if it gives people the wrong idea) then it must be ok… right?

      Now, from the words you used… I might take towards thinking, or “assume”, that you are trying to imply – that you believe I am just an average normal person with typical neurological activity, just trying to wind you up or trying to troll you in some way. Perhaps I would sense some form of hidden judge-mentality on your part. I do feel that you were making assumptions, and being as you claimed I was being “judgemental”, but I do apologise in advance if I got that wrong at all.

      So now, may I just ask you, how do you know that the professionals which you speak of, do not also have some form of autism?

      I think it would be a little judgemental to assume that those professionals have a normal level of brain activity. As I could count approximately 30 or so people whom I know, that do have some form of autism. Of which, only 5 or 6 actually have a formal diagnosis.

      Autism is a progressive and regressive condition.
      Some people refuse to believe that there is anything wrong at all, because they cannot see any physical symptoms.
      So you can tell those people what is physically wrong or happening to someone who has autism.-
      That being, they have an excessive amount of neurological activity.

      And you can help to prepare a person for life with autism, by helping them to practice mindfulness, and by treating them as a young adult – right from the start.

      I am only here because, “don’t say these things to the mother of a child with autism” has to be the most unhelpful autism awareness post I have ever seen.
      Please do not hesitate to say if you think I am wrong in some way.
      Thanks.

      • Anonymous guy with Asperger's
        April 3, 2017 / 1:27 am

        *embarrassed not embraced^

  15. April 2, 2017 / 5:45 pm

    My wife and I are parent carers to a 30 year old, and have travelled the same path as you are setting out upon. Our son has multiple and complex disabilities and his diagnosis of severe autism never came until he was 29. Many years of lost opportunities to introduce coping mechanisms and we are still very much at the beginning of introducing interventions now. We too have dark eye bags through lack of sleep and the constant attention that is still needed. I would add that we find that unless you are the parent of such a special child, no matter their age, people just don’t understand what we are going through. Good luck to you, if you want to share information of our journey, I’d be happy to.

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