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A feels-like-she's-constantly-failing mum in need of advice please

NAS86254

Hi. I don't know if anyone can help me, but I'm desperate in honesty. I apologise in advance for my rant, but I would be so grateful if someone could reply and offer any advice please.

I have 3 children, 2 of which are on the spectrum, but awaiting their 'official' diagnosis (numerous professionals have said they both clearly have asd). 

My eldest is nearly 8, and my younger is nearly 5, he has a twin sister who appears neurotypical so far. They are the complete opposite of each other, truly proving how vast a spectrum there is! I myself grew up with a younger brother who was autistic, and my eldest is very similar to him, so I feel like I can understand and support him for the most part. 

But younger son is completely different, and it's starting to honestly break me inside that I can't seem to help him. 

He has limited speech, doesn't respond well to makaton, and can become for want of a better word, aggressive, without the intention of hurting himself or others, through becoming over stimulated or losing control or various other reasons we're not always confident on why. He is also one of the sweetest, loving, kindest boy who smiles so purely with his eyes when he's happy. But sadly, other people appear to struggle to see this, whether in public with us or in his school. 

Recently, we have had two separate, horrendous incidents out in public with him, where he has been struggling for various reasons, and we have struggled to support him. Unfortunately in both incidents, lots of people were staring and scowling at him and us, and yesterday someone actually shouted at him to "shut the f*** up". It honestly devestated me, and I couldn't believe someone would say that, not only to a young child, but to another human being, let alone a child who was struggling and autistic, merely confused by uncontrollable change in our day. 

I had to fight back tears very hard both times, and even now I'm tearing up thinking of these heartbreaking incidents.

The reason I'm putting all this here is, I would love to hear what other parents/carers do in these situations? Am I wrong in trying to take my son out to certain places, to encourage certain activities? I feel like his difficulties are becoming more apparent to others lately, or perhaps as he is growing people assume his behaviour is more inappropriate than when he was a toddler, or perhaps he's just changing and fighting to tell us he doesn't enjoy these activities, or maybe things are just becoming more intense for him as he grows and develops. 

I just feel like I want to wrap him up and keep him safe from these things, but I also want him to live a happy, confident, free life. I don't want to prematurely restrict him, but am I being selfish by continuing to pursue/encourage family days out/small outings? He seems to have issues every single place we go outside of the house, and these days it's just so much more frequent and intense. Am I asking too much of him?

I'm worried for my other two children as well, especially my daughter as being his twin, she often compares herself or looks at him struggling to understand why he can be treated differently or unintentionally prevent them from doing something or impact how we do something. 

Trying to consider their different needs is becoming very complex, and I find myself crying every day, several times a day about how I feel I'm letting them all down. 

I personally have no friends or family, it's just myself and my husband, I've become very isolated due to my own physical health issues, I'm unable to work and my husband is my carer, as well as our boys. I just feel so alone and overwhelmed and I would really be so grateful if anyone could maybe just share some tips or advice that I could try, as I feel I've tried so many things over the years, and nothing is sure to work, every day is different and each response to all our methods is so interchangeable throughout the day. 

I used to work with children myself, so have some experience of methods and resources designed to help, my husband is in a different industry though so he relies on me to guide or advise him. But I just can't seem to do that, and unfortunately my husband has no experience with autism or children other than ours, so we're both just trying our best. 

Thank you for taking the time to read this, I appreciate it.

  • You have a lot on your plate and you care deeply for your family .You are a good mum...( say it to yourself..I AM A GOOD MUM) You sound a little depressed as you are crying a lot. Make sure you ring your doctor for advice asap.Taking care of your own mental health will help with all the other issues in some way.Even if it only means you can think a little bit clearer.Sometimes I find that it helps to get stuff out of your head and write it down on paper. That way you can maybe see what needs to be dealt with as a priority and the order the other issues fall into. You will be surprised how useful this is.That way you think od one problem at a time and not all of them all at once you are going to be ok...this community has got you we are here for you.x

  • HI!

    Sorry to hear - this sounds frustrating. You're their best mum, even if it's trial and error right now just having a desire to protect and nurture them. I have two sayings I like to remind myself of regarding younglings: "You cannot force a process nor cut it short" and the other is "Very few things are matters of consequence". These seem to be a good guide.

    I tend to think of doubt as my best friend, it reminds me to check my bias, to remember things are complex and that people sometimes just need to feel important they're not always looking for 'truth'. So, I have only been rewarded for listening to doubt as though it were a Cricket on my shoulder - raising a conflicting point which should spark investigation :)  So, if you're having doubts about moving too fast for the 5 yr old, then maybe follow that inclination - your instinct. We can often find ourselves seeking to please everyone else in the world who doesn't have to walk our path or live our life. And then we begin to feel conflicted about decisions with those few people we ARE responsible for/with. 

    Kids move and grow at their own pace. They might need to first learn how to use a wand before they can fly or learn latin before making potions. Others might just have a green thumb and dive in to chemistry and cooking and all sorts. Still others might be able to envision all types of wonder but not be able to realise it until they're 30. I'm being silly, but there's no magic - everyone is just different. While the basic fundamental values that Autistics struggle with are language/vocabulary, sense-perceiving the world as too real (this is actually positive - a keen sense for danger), and in need of a great deal of uninterrupted time/hyper-focus (Monotropic brain), and... these might contribute to difficulty with executive function like tying a shoe even though they can envision themselves doing it, the fact remains that we develop much better if early years focus on our strengths, our steadfastness, our explorations, our engineering and imaginings. There are so many ways to express and communicate - focus on easing confusion or compounded frustration.

    I may sound articulate, but I would wobble into a puddle of tears until nearly 30 for lack of help with vocabulary. I could sense and see all sorts, but was left to fend for myself, even though I was off to a decent start, once my parents divorced and remarried, I was just left to it and wouldn't come into my own being until 40. The wisdom I received from a grandmother who saw my potential and wouldn't be moved by the demands of the world stuck with me: focus on one thing at a time - she would give me a berth for being and getting lost in my mind and creating. She would help when I couldn't find the right word for a thing to be precise. In her house I was never too pragmatic or pedantic, she appreciated exacting measurements in the kitchen and reinforced the one thing at a time rule as we had to allow her to focus on cooking and then she would always attend to our needs. I have taken a great deal from her which I reinforce with clients: Let's schedule a time. I am there exactly when I say or text immediately if there is a hold up. Reliability curates trustworthiness. I did this with my son and always gave him an option if I could how we would navigate going out. 

    What is your son good at? Grow that. Allow room for that. There is time enough when he's older to navigate a cruel world. How much better if we are prepared? There is time to learn to do adult things, but all the better if we can go into them with confidence and thoughtfulness, with a sense of being grounded and with good values. If we allow an incubation space for our children to thrive, once they decide it's time to move forward, they'll let us know. Protect and nurture until they ask you to stop. And grow into a source they can always seek wisdom from :) x

  • Hi, I'm sorry to hear you are struggling at the moment, sending love

    It must be hard to feel unable to help your son, when you know he is struggling. Some kids just don't get on well with makaton, it can also be a lot of effort when feeling overstimulated to use makaton. Have you considered communication cards, it's another alternative to speech which you might not have thought about. Special Needs Communication Cards Set of 26 Pcs Flash Cards Emotion Cards for Kids Autism Visual Speech Cards Sensory Feelings Cards with Spring Rope Lanyard for Non Verbal Toddler Children Adults : Amazon.co.uk: Toys & Games here are some I just found. I have some which I use when I get overwhelmed and am non-verbal. If you do buy them then i recommend putting the most important ones first so he can communicate his basic needs to you easily.

    It sounds like some of his meltdowns may be due to not being able to communicate when he is feeling overstimulated. Something like a signal for when he feels like he needs to leave a place might help. perhaps just tapping you on the arm, to let you know he needs to leave.

    I'm sorry to hear about your recent experiences, that must have been really hard for you both. Some people really are so rude. Yep, it certainly sounds like as he is getting older, his behavior is seeming more unusual to the ignorant people out there and they are reacting badly to it. How would he feel about wearing a lanyard to let people know he is autistic? A lot of autistic people attach fidgets to their lanyards which help them, I have a couple on mine such as poppits which really help when I feel anxious in public spaces. He shouldn't have to tell people he is autistic, people should just be understanding of his needs but unfortunately some people feel the need to make our day worse.

    You are absolutely not wrong to take him out to public places, it sounds like you are a great parent trying their best to give your son lots of experiences. You certainly aren't selfish to take him out, you have other children who enjoy these things so it's important they get to experience them, it doesn't sound like your youngest son doesn't want to go, it sounds like once he is there he struggles with the different environment.

    You probably already have noise cancelling headphones for him, but if not, maybe try those to reduce the sensory imput. My cousin really struggles with noises but he didn't like noise cancelling headphones. We got him some over ear Bluetooth headphones (they were about £20 so not too expensive) so he can listen to some music whilst we are out and that really helps him.

    Alisha xx

    P.S. It sounds like you are doing an amazing job, your kids are really lucky to have you