Birds are very trusting. Well they are in our garden and they were in my parents garden. Whatever you put out for them – they would just crack on eating it. I remember being told as a kid

“Don’t fall over when your feeding them because they will start on you next”

Maybe that’s why I was allowed to watch a certain Hitchcock movie soon after.

Son is the opposite. Need to confirm details like oven temperature, sell by dates, cooking times, fridge temperature, cleanliness of utensils before food is deemed safe to eat. Limited trust in food.

I remember as a kid when our family got its first ever microwave oven. It was the size of a small city. When unpacked it was time to test the beast. I was sent into the kitchen with a cup of cold water. I tried to explain what the buttons did but quickly realised my parents had legged it. The kitchen door slammed shut with Mum and Dad hid behind it. Safely behind the blast protection I was told to begin the process of warming the glass of water. Clearly to my parents this was on the same risk level as an exposed nuclear reactor core. Thinking about it if it had been that dangerous clearly I was the expendable one. Not sure Dad ever used the new cooking device. He had zero trust in the nuclear age.

All those years later and we still are talking trust.

  • School are trying to convince me that they are doing everything possible to help our son with his dyslexia.
  • The Council is trying to convince parents like me that they are providing a class leading Autism Support Service to all its children. Suppose that includes our son.
  • The Council is trying to convince me that it is a waste of time for our son to be seen by an Educational Psychologist as it won’t achieve anything meaningful which could be used to tailor his schooling.
  • The Paediatrician is trying to convince me that I should push for an Educational Psychologist to see our son as it will help tailor his schooling and come up with specific interventions to help him. It will also reduce the demand on his department.
  • The Health Service is trying to convince me that because our son is a low priority and doesn’t fall into a service which has been commissioned then he doesn’t need any specific support over the coming years.

We are expected to trust the professionals and follow their advice without questioning it. Clearly they know best. Clearly they only have the best interest of our son at heart. Finance and budgets don’t influence decisions. They will provide support and care at times to suit the kids not the professionals. What do we know – we are not trained. We are not professionals. Leave the care to the experts. A few years back I was naive and I believed this crap.

The looks you get when you do have the audacity to question or worse to say NO.

Don’t get me wrong this is not all professionals. You come across brilliant ones. But the funny thing is that they are often the ones who listen the most. The ones who push the idea that the kids and parents should take ownership of the care package.

So back to trust. Trust in the system. It is none existent. You have to question everything. Push for answers. Don’t be afraid to say NO. Ask for second opinions. AND when the inevitable brick wall hits

The ‘service is not available’, the ‘your child doesn’t meet the criteria’, the ‘forgotten about’ zone, the ‘just go along with the treatment’ train line.

Be prepared to fight. No guarantees of success but it’s worth it. The kids deserve it.

79 thoughts on “Trust”

  3. Amen! Amen!! and AMEN!!! 🙇‍♂️

    Next time you get ‘The Wall’ ask the person to their face: “What would you do if it was your kid who was suffering because the system is not designed for his/her needs?”

    EVERYONE in ‘The System’ will do, or TRY to do, whatever gives them the least hassle. Sometimes this will seem to be what you want/hope for, often it won’t. The real problem is the system caters to the ‘average’, and a certain ‘range’ that fall either side of it. Fall outside that range and ….. 😦

    It’s not a matter of Trusting the system… it’s a matter of fully understanding how it works and how to work your way around it – and never take “No’ for an answer until you have what you/your son need. (Also get them to give you all answers IN WRITING!! Wait for a copy if you have to, but get it before you leave their office).

    Remember too, that things are changing – faster these days, HOWEVER there are many in the system who do not always ‘keep up’ with the changes and do things the way they have ‘always’ been done. That is to be argued against at all times – things can always be done ‘BETTER’. 🙂

    The squeaky wheel gets the grease… but if many wheels start squeaking then there is a better chance of getting changes made. 🙂

    Stay Strong Gonzo! (the Magnificent Ft Mr Crimble!)

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      1. Yeah! Particularly as you’ve almost mastered the art of not eating, paying electricity and water bills or spending any quality time with your son – right?

        I take it he, in turn, has mastered the art of being both a father and mother to his kids while maintaining the same lifestyle and expenses incurred as before but on half, or less, of the income, all while dealing with long-term grief over the loss of a much loved one? Yeah – of course he has. 😦

        (Co:dumbass:-ugh!)

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  4. My husband and I no longer trust the world around us to have our kids’ and family’s best interests at heart. That’s why recent years, more so this year, have seen us fight one battle after another. Sometimes the temptation to give up comes strong, sometimes we just flop down and let go. That’s alright, every soldier needs a break.
    And after that short while, it’s back to the battlefield. Because our kids trust us to do our best for them.

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  5. Great shot of the Dove by the way. You didn’t take that with a stupidphone – did you?? 😲

    As for microwaves, i remember buying a microwave for just under $200 back in the 80’s because the ad said they would NEVER be this low a price again!

    Most microwaves in the big dept stores here sell them for $200 or less and they have more features than they did back then, some 35 years later. 😦

    Adverts LIE!!!!! (Remember that!) 😉

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    1. I did through a window. The dove most helpfully stood still for a minute. Bizarrely I use an old bit of Nikon software to store my photos, it keeps telling me that my old iPhone is in fact a Nikon DSLR with zoom… cool, not sure where the zoom button is on my phone.

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      1. Sorry – i shouldn’t laug… HAHAHAHAHAHAHAHAHAHAHAHHH!! 😀

        For just 125 pounds i’ll send you one of my 2 still-working ‘old’ ones (Sharp or Toshiba?). Microwave is free – the cost is for postage! 😦

        (Can’t help with the washing machine i’m afraid!!) 🙏

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      3. Aah yes – the ‘Mystery’ option button!

        It probably makes a red light flash in a bunker somewhere that gives the operator a heart attack! 😉

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  10. Just a thought, but have you ever looked up the studies on gut bacteria and ASD? There is some interesting stuff there…
    And perhaps a sliver of hope for treatment. Arm yourself with the latest research and then go see your GP. He can recommend you to specialists in the field. Be proactive with the doctors. There are new studies every day. Keep fighting on.

    https://www.sciencedaily.com/releases/2017/06/170619101834.htm

    https://www.caltech.edu/about/news/gut-bacteria-influence-autism-behaviors-mice

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  12. This is a good message. I am such a push over. I accept whatever is said (even if I don’t agree with it just because I am not a fighter). I need to be more of one. Good post.

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  13. I’m so sorry you’ve had so much thrown at you all and so many hurdles to jump. You’re right, you have to question everything, and be prepared to challenge and fight every step of the way. Keep remembering why you’re doing it and that it’s worth it. You do the best you can and for what little it may be worth, I think you’re doing a fantastic job, you’re doing all you can and it’s a painful learning curve that you have to question that trust but you’re a fighter.
    Caz xx

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  15. I’m glad to see most of you survived The Microwave Episode, though it may answer your “why does my hair grow more on my hands than head” question of earlier…

    My son’s pediatrician is always telling me that I need to become an expert parent; that I need to fight for what he needs.

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  16. While in a different country than you, government, ie school systems and the medical community are similar. That said, you are right … trust no one and question everything … EVERYTHING! Their priority is money … saving as much of it as they possibly can, spending as little as possible. YOUR priority is your son. Hold their feet to the fire, make them explain everything, take nothing they say at face value, and ask questions … and then ask more questions. And then … YOU tell THEM what is needed. Your son’s life is in its formative years and he cannot be allowed to slip through the bureaucratic cracks just so they can save a few pounds!

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      1. It is the same here. I have personal experience in this since my youngest son is severely disabled and two years ago we went through a major upheaval when the state decided to close the group home he was in, saying it would be better for the children to be in private homes. My son is unable to dress himself, walk, feed himself, and has no verbal communication, so … a private home really was NOT the answer. Eventually, we found another group home, a smaller one, that we were able to place him in, but it is not ideal. Hang in, my friend … keep fighting … that’s all we can do.

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      3. The core problem is the politicians taking the decision on care funding are divorced from these problems or if they do encounter them personally they just go private and buy the care and support. That’s why you get people like Boris Johnson first stated policy is to give tax breaks rather than address the core problems facing many today.

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      4. The wealthy politicians … and most of them are … cannot begin to understand what the 99% of us who aren’t wealthy go through, cannot conceive of what it’s like to try to get the services our children need when we cannot afford to simply buy them. We elect them to represent us, but can they really do so if they have never walked a mile in our shoes?

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      6. I think it is much the same here, only rather than upbringing and education, the criteria for the ruling elite is money. The rest of us are tools to accomplish the goals of the wealthy elite.

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  17. I work in a school and see so many children fighting for help. We can see they need it but the local authorities can’t. Or they sign kids off way too early and social services are always failing them. It’s so frustrating

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