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Forums / Anxiety / Son needs support

Topic: Son needs support

13 posts, 0 answered
  1. Browneyedgirl82
    Browneyedgirl82 avatar
    11 posts
    30 July 2021
    Hi, I've been trying to find avenues to get my 11 year old son support for the past couple of years. He is diagnosed as ASD1 although I believe it to be closer to a Level 2 due to social skills and working memory issues. Also ADHD but this is mainly due to the lack of memory and focus rather than hyperactivity. Over the past couple of years his Anxiety has increased immensely. Along with it has come self esteem issues, self hatred, lack of motivation and now he has started punching himself in the head when he gets upset. I have been on a wait list since Sept 2020 to get him into a Pediatrician. He has been to see 2 psychologists who were not helpful. I feel he needs medication for the Anxiety as a temporary measure while we find him a suitable therapist, however without a pediatrician we cannot get this. My question is, where do we turn for support now? Funds are limited as we do not have NDIS. I'm worried that if we can't get him support soon it will take a very long time to fix the damage currently being done.
  2. Sophie_M
    Community Moderator
    • Works for beyondblue moderating these forums
    Sophie_M avatar
    6126 posts
    30 July 2021 in reply to Browneyedgirl82
    Hi Browneyedgirl82, 

    Thanks for your post and for being a part of this warm, welcoming and understanding community. It sounds like you have a huge amount on your plate right now. We can hear that it is difficult to navigate the health system when trying to find support for your son, we can only imagine how this feels. 

    We think that the best people to speak to could be Parentline, they are experts in supporting parents when they need it and might be able to point you in the right direction. If you follow the link above it will show you the state-based numbers so you can call the right one.

    There is also Autism Connect which has a whole load of information as well as a phoneline you can call on 1300 308 699.

    You can also call us anytime on 1300 22 4636 if you want to get something off your chest, or if you are feeling overwhelmed. Our team are here for you 24/7, you don't have to go through this alone. 

    Thank you for posting and please feel free to keep us updated on how you are going if you feel comfortable. 

    Kind regards, 

    Sophie M
     
  3. smallwolf
    Community Champion
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    • Life membership is awarded by beyondblue for providing outstanding peer support to the online community over a period of 3+ years.
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    smallwolf avatar
    5880 posts
    30 July 2021 in reply to Browneyedgirl82

    Hi. There are some other links to look at near the bottom of this page ...

    https://www.healthdirect.gov.au/autism

    I am sorry you do not seem to be getting the support you are looking for in a timely manner. The waiting period seems to be long - do you have any idea how much longer you will have to wait?

    I am not sure how well this idea will go down... I had to search a little about what you were talking about. At the end of one page it suggested reading blogs on ASD is helpful. If not for support or knowing what others are going through you might get some ideas for getting support for your son. This may or may not be useful for you. Lastly and I cannot do this easily on my phone, but a Google search for

    Beyond blue ASD

    Will find stories from others in this space on the forums here.

    Hope some of this helps.

  4. therising
    Valued Contributor
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    therising avatar
    2303 posts
    31 July 2021 in reply to Browneyedgirl82

    Hi Browneyedgirl82

    You are such a beautiful mum, working so hard to make a difference to your son as he faces the challenges of making better sense of who he is.

    I find one of the toughest challenges of being a mum involves those situations where you didn't see something coming (the lead up) until you recognise a sense of urgency. I found this to be the case with my 16yo son. I'm wondering if you can relate in some way, regarding your own son and the following traits:

    • My son has always had a truly brilliant imagination. When I say brilliant, it's astounding how clearly he can see (in his mind) what you're talking about and how clearly he can see the ideas, stories or inventions he can conjure up
    • As he's progressed through his life, his energy levels have also progressed. He's either mentally hyperactive or physically or both sometimes
    • He's always been highly sensitive. With an incredible ability to sense the nature of people, the nature of a situation and the feelings within himself (such as hyperactivity and the feeling of being brought down by others), he holds the ability to get a feel for things

    While all these point to having great abilities, they can come with a serious down side and I do mean serious. An imbalance between imagination and focus, can present major issues including a debilitating lack of focus. Having such a well exercised imagination can also come with a myriad of problems. While you could try convincing your child that the way forward will hold constructive difference, if all they can clearly imagine is no difference this can be anxiety inducing and potentially depressing. Imagination can have a dark side. It can be hard to bring someone out of what they imagine.

    If the mind is more hyper than the body, people tend to not consider ADHD. Many think it's more about some physically hyped up kid. Having a hyper mind can feel like torture for some. If we're positively mentally hyped up we'll feel it physically, perhaps channeling that hyperactivity into constructive action. A hyperactive mind without a constructive channel to vent through can be a form of torture you can feel in a number of ways. Wondering if your son has a lot of trouble tolerating boring subjects at school. Can he relate better to ones where he can channel his imagination?

    Could your son be hitting himself in the head not just as a form of self punishment but also to try and stop his thoughts. I imagine they're exhausting him.

    My heart goes out to you

  5. therising
    Valued Contributor
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    therising avatar
    2303 posts
    1 August 2021 in reply to Browneyedgirl82

    Hi Browneyedgirl82

    Had a thought. Not sure if this will make any difference but felt the need to put it out there, just in case...

    If your son's highly sensitive, he will feel a lot. Most of us can relate to the physical sensations that come with feeling stress, feeling failure, feeling unheard or shut down, feeling a lack of direction, feeling hopelessness and so on. They're such physical experiences.

    I suppose it would be regarded as a mindfulness exercise to introduce your son to abilities and feelings he never knew he had. Maybe this is something he could come to love about himself, helping with some self esteem issues. I'll elaborate by offering you some things you may be able to relate to...

    • How would you feel if someone was to offer you a variety of aromas, say in the form of perfumes for example? You'd get a feel through your sense of smell. One may lead you to feel peace, another excitement, another freshness, another joy
    • How would you feel if someone sat you down outside to watch the behaviour of ants. You'd feel through sight. I know, a weird example. Maybe you'd feel fascination or curiosity, regarding the way they work together, how they come out scouting in full force before rain comes
    • How would you feel going out to taste a new meal? You'd feel through most of your senses. You'd feel the atmosphere. By the way, if you're highly sensitive to sound, you may choose a quite place to eat. You'd feel the meal through taste (a taste that may lead you to experience a sense of joy or repulsion). You'd feel the texture of the food or a variety of foods on the plate, hearing the crunch or the softness. You'd feel the smell of that meal, perhaps invoking a peaceful or exciting feeling and so on

    If your son is highly sensitive, could he be looking to feel beyond the sensations of stress from school, beyond the sensations that come with disappointment in himself, beyond that horrible sense we can feel at times known as hopelessness etc. What if he could feel just about everything, without thinking so much all the time. How would it be to stop feeling your thoughts all the time? Would he be amazed by his ability to feel so much? What would amazement feel like to him? Would it feel liberating in some way?

    I can imagine you and your son are on the same page to some degree. When it comes to this enormous challenge, regarding his mental health, I imagine you're both feeling a lot of the same sensations that come with this challenge, frustration included.

    :)

  6. Browneyedgirl82
    Browneyedgirl82 avatar
    11 posts
    16 August 2021 in reply to Sophie_M
    Thank you Sophie. It certainly is overwhelming at times. I appreciate your response and will try Parentline and Autism Connect thank you.
  7. Browneyedgirl82
    Browneyedgirl82 avatar
    11 posts
    16 August 2021 in reply to smallwolf
    Thank you smallwolf. I have to go back to the GP and see if they can offer any insight into the wait list, or possibly upgrade his referral? Alternatively I have made an appointment through the private system, but this is not until February 2022. The system seems broken. Thank you for your suggestions.
  8. Browneyedgirl82
    Browneyedgirl82 avatar
    11 posts
    16 August 2021 in reply to therising
    Yes I can relate to some of this and I think you may be right about the hyperactive thoughts. I have watched a lot of videos on ASD and how places like shopping centres can be torture for them because it is sensory overload. I try not to put him in situations like that anymore, but there are times when I need to, which is where medication for anxiety only would assist. For other situations we use distraction techniques. Some days just putting on shoes and socks is a challenge. So I started getting him to do his times tables out aloud until he wasn't hyper focused on his shoes anymore. Some days it works, some it doesn't.
  9. Browneyedgirl82
    Browneyedgirl82 avatar
    11 posts
    16 August 2021 in reply to therising

    Thank you. I see what you mean and I think I understand. I just feel like it's all above my level of expertise. I've spent the last 6 year reading every piece of literature I could find about parenting and ASD. Things I have tried have helped, a small amount and sometimes only momentarily. Then he loses interest or doesn't want to do them anymore or gets annoyed because he doesn't want to be different. I feel I've reached the limit of my knowledge and need some professionals to help us to develop further. We have tried meditation and mindfulness. Feelings activities, but he just ends up predicting his feelings, because he doesn't want to do the activity. It's a full time job keeping him occupied, engaged and mindful. I have a full time job and struggle with just keeping up with day to day things because I spend so much time doing what a psychologist, occupational therapist and teacher would do. I need relief not just for him, but for me.

  10. smallwolf
    Community Champion
    • Outstanding members who have volunteered their time to support others here on the forums
    • Life membership is awarded by beyondblue for providing outstanding peer support to the online community over a period of 3+ years.
    • A member of beyondblue's blueVoices community
    smallwolf avatar
    5880 posts
    16 August 2021 in reply to Browneyedgirl82

    Hello.

    I read through the replies you made to everyone and it seems like a real struggle and the support systems are not working. A friend has twins and one of which is on the spectrum and his wish is to be normal - it is not the best word to use but you know what I mean. I am not sure how, but hope you are able to get some relief.

  11. therising
    Valued Contributor
    • A special award for members who go above and beyond to support others here on the forums
    therising avatar
    2303 posts
    18 August 2021 in reply to Browneyedgirl82

    Hi Browneyedgirl82

    The desperate need to find a break must be overwhelming. I can only imagine the exhaustion you must feel and then I imagine I'm way off when it comes to the full extent of that exhaustion.

    The system is definitely broken if you're having to wait until February. With more and more highly sensitive kids being born every day, there's a growing demand for specialists when it comes to ASD. I wish the government would wake up to this so that people like yourself wouldn't have to wait and seek private consultation on top of it, which can be expensive.

    I know someone now in her 20s who, looking back and in connecting the dots, is definitely on the spectrum. I can recall looking after her and her sister overnight when they were primary school age only to face the following morning and the drama of putting on shoes and socks. It was intense. I learned later that it's the seams in the toes of socks which she couldn't tolerate the feel of. She wouldn't wear just anything outside of school either. There'd be a typical outfit she'd love, typically baggy so she couldn't feel anything rubbing on her skin. She was definitely not a hugger either. Admit, I'm not much of one myself. Basically, her sense of touch was so intense as she was growing up that she had to manage it to the best of her abilities - no seams, no tight clothing, as little human physical contact as possible. She's really pushing herself to make more eye contact with people these days and I can tell it really challenges her. She's admitted she doesn't speak unless she really feels the need. Initiating conversation remains a challenge for her, one she's also working hard on. She is a young lady who is so incredibly sensitive and gentle who has a truly brilliant mind. For her age, she has a mind like no one I know. While she finds her place in this world, studying like a beautifully self-disciplined champion, she possesses the quite wisdom of a sage, something she only shares when prompted thoughtfully.

    It's hard for people who are so sensitive and sometimes harder for the people who need to guide them through a somewhat insensitive world. Watched an absolutely brilliant very enlightening video on my laptop the other week which is a very different take on autism, given by a lady who faces the challenges of being sensitive herself - 'Why everything you know about autism is wrong | Jac den Houting'. Hope watching it make some difference to you in the way forward.

  12. BeADodo
    BeADodo avatar
    12 posts
    21 August 2021 in reply to Browneyedgirl82

    Hi Browneyedgirl82,

    I relate a bit to some of the things you’ve posted and just wanted share my thoughts.

    I am/was high functioning ASD as a child. I’m 32 now and you wouldn’t know I was ASD. I was very shy and spiralled whenever I felt embarrassed or uncomfortable, also had some touch sensory issues. I would latch on to every little thing. Eg if someone said ‘hey how’s it going’ in passing and I said ’you too’, I would think about it for days and feel stupid for days. It wasn’t until someone explained that no one really said the right thing in those brief social interchanges, that I stopped caring. I didn’t understand it at all until then. I actually thought everyone else but me knew what they were doing in social interactions and was confident about it, and I was just weird for not knowing.

    My parents apparently spoke to all my teachers and said that I would completely withdraw if they disciplined me. I didn’t have ADHD though and enjoyed learning new things. I do remember feeling like i was getting away with some things that other kids didn’t, but I think it definitely helped me. Though I still hated speeches at school and would have never seen myself as a leader (I lead a team of 18 adults now!)

    Predicting feelings is something I always did and occasionally still do (though only when I am feeling depressed or a lack of motivation which comes and goes). For me, its to avoid being disappointed. But I always forget that I do actually end up feeling better by doing something like mindfulness or exercise. But it’s not until I realize that myself that I snap out of it.

    I also used to hit my head against the wall/door out of frustration, and I still do whack my head from time to time when I feel all fogged up. I know I don’t want to feel some way but how do I stop? I guess I always thought the brain is what controls it, so giving it a jolt might help. More recently jogging helps me with the brain fog.

    I think what helped me was lots of love and support from my family. I wanted to feel like I wasn’t a problem child and didn’t like it when I was aware that people knew I had ASD.

    It took a while, but every little lesson I learned along the way about how to deal with people and social situations helped me get better at navigating them.

    I also had to want to do it. I liked it when mum suggested I see someone to ‘help me write plans for social interactions’ rather than ‘why I struggle interacting’

  13. Browneyedgirl82
    Browneyedgirl82 avatar
    11 posts
    8 November 2021 in reply to BeADodo
    Thank you BeADodo. I can relate to so much of what you said. I have unending empathy for the situations my son encounters every day. What so many of us take for granted, is a real struggle for him. He and my husband come home every day exhausted from pretending to be neurotypical, which unfortunately leaves me with the brunt of their behavioural issues and a family which either shuts down or dumps their emotional load on me each night. What kind of specialist did you see to help you navigate social situations? I am very interested in this. I'm trying to teach him at the moment about different feelings and things like humility which I have explained to him as not thinking less of yourself but thinking of yourself less. He just cannot grasp a lot of concepts. I've saved some youtube videos to watch with him tonight which will hopefully explain it better than I can. It's just so hard to do all of this without support from professionals.

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