We are loving the episode of Pablo on CBeebies today!
It’s so lovely that there are shows like this on television. Today they covered the anxiety about going out and having to stay away from people. They mention how things have changed, and also share the autistic experience through flapping, dancing to the colours from music, the sensory overload from supermarkets, the difficulties in identifying feelings and dealing with change.
I love the pacing characters, the echolalia and repetitions…then the explicit references over how to self regulate and calm down. I also love the questions and discussions between characters, all communicating Pablo’s streams of consciousness.
Quite a genius show I think. Very imaginative in its presentation. For example, exploring things that make Pablo ‘feel sparkly’.
In recent months, I shared a post about a charity who visited us weekly to help out with whatever my family needed. Today, this charity gave me permission to share their name, and as part of volunteer week, I am very honoured to do so. Thank you Home-Start South East Dorset for everything you have done for us, and so many other families.
This will be a long post…but it would mean a lot if people read it.
Last September, when I started this page, I was in a desperate place. My eldest’s assessment for ASD didn’t seem to be going anywhere, and we were told it was unlikely that he would gain a place at our local school, for unrelated reasons. My youngest was flagged up as having ‘behavioural issues’ and just months before, I had been diagnosed with a chronic illness, after being told ‘it was all in my head’ for several years prior. Many people expressed their opinions about my children, and my parenting…and one day…it just all got a bit too much…
I felt that I needed a place to vent my frustrations, to have a voice, to find people who got it, to educate those who didn’t, to promote awareness and subvert the misconceptions…and so, at that moment, SEN Child of Mine was born.
Simultaneously, Home-Start came into my life. Well, our lives. My health visitor contacted them on my behalf, as she was concerned about me coping with two ASD children whilst suffering with chronic illness, and a short while later, they got in touch. I was adamant I didn’t need help, but the team clearly saw something I didn’t.
They encouraged me to accept the support and it was at this point they really came into their own. They get to know you, and their volunteers, so well, that the matches they make are amazing. In my case I have made a very close, life long friend in a volunteer who is autistic, like me, and has autistic children, like me.
We played with the children, we went for walks, we baked biscuits…but most importantly…we talked. I have a wonderful family who continue to be such a great support network, but this new interaction made such a huge difference to my emotional well-being. She not only ‘got me’, she lived it, so offered valuable, first-hand advice. She made me feel so validated and accepted, as an autistic person and mother, and I really looked forward to seeing her every week. I have had many people question my autism, and she helped me ‘let the mask slip’, as it were.
During lockdown, we have kept in touch, as have the team, and we were even gifted some Lush products to get us through.
People turn to Home-Start for different reasons, but I am so grateful to have met them, and of course my friend. We are so similar in our views and behaviours, and we both share the same passions and drives regarding helping other people like ourselves. Needless to say, we have lots of plans to take this further as our children grow.
Due to everything they have done for me, I will be volunteering with them in some capacity, and have found a new professional focus for the next stage of my life. I will share this with you at another time, but they are supporting me in this venture, and I am extremely grateful.
Home-Start help families in a plethora of ways, so please don’t be afraid to ask for help if you need it. They are warm, friendly, non-judgmental, and are doing such good in the community. And of course, you can always get in touch with me.
Equally, if you want to help their charity, perhaps you could consider making a small donation, or offering your services. I have added a donation button to this post on Facebook, and have started it off with £5. Please do not feel obliged whatsoever…I just wanted to do something personally to promote them and thank them for all the good they do in the community.
If you got this far, thank you so much for reading.
People with the profile of PDA can often come across as angry when in fact they are vulnerable, and experiencing high anxiety.
Their tone of voice and general demeanour does not communicate this, so they are misunderstood, and treated with annoyance and impatience.
They are perceived as possessing anger problems, being purposely defiant, or being aggressive. From my reading and interactions with people who fit the PDA profile, it is my opinion that these behaviours are not innate: so nurture rather than nature.
ASD strategies do not tend to work for people who fall under the profile of PDA.
It is crucial, therefore, that this is identified correctly, so adequate interventions and approaches can be adopted, with a view to reducing anxiety and helping the individual to feel safe, secure and understood.
People with PDA can experience mental health issues as a result of their treatment, and grow up with low self-esteem and a feeling of unworthiness.
It takes a lot of patience and support to help these individuals, particularly once the damage is done.
I’m having a really bad day today, emotionally. I’m not writing this for attention, but to explain why this blog is so important to me.
I am looping on failed interactions and past injustices a lot. This includes online ones. My online persona has got me into a lot of trouble. People don’t always like what I say and perceive me as confrontational. I do understand how I can come across like this…but it’s never my intention. I’m just very passionate and sometimes I’m so fixated on a subject, that’s all I see. I don’t see how it might offend somebody. But then…the damage is done…and there are always consequences.
Despite how lucky I feel to have my children, my husband, my family, my friends and all the creature comforts we have, days like today are more common than I would like. And I struggle to control them.
Every human being experiences this, but many of my ‘loops of negativity’ come from things that are absolutely related to being autistic. I am proud of who I am, but I just wish I could have known who I was a lot earlier, as I’m sure many of these issues would have never come about, or I could have at least explained myself better.
I can tell somebody I’m autistic now, but the opinion they have of me has already been formed, and there’s nothing I can do about it. But what I can do, is try to share my experiences so that other people like me may identify similarities and recognise who they are a lot earlier.
I’m not sure if this makes sense at all, partly because I am trying to write this whilst being overloaded with auditory input from my children, but I’m not using this space just to rant aimlessly. I want so badly to help other people.
Maybe I can help somebody better understand their child or loved one. Maybe I can help a teacher understand their student. Maybe a young girl will resonate with what I say, and seek help earlier in life. Maybe that will prevent her from going through what I have been through.
As you know, I think being autistic is awesome, in so many ways, but our differences do cause us problems. I hate appearing weak or somehow painting myself, and others like me, as ‘mental’ which is how some people perceive autism. But the fact is, our interactions with the world can create huge anxiety and upset.
I don’t believe we should be forcing autistic people to ‘become more neurotypical’ and I feel that masking is so damaging.
However, I’m a realist and although I’d love for things to be different, currently they aren’t. So for now, we need to support autistic people in any way we can, so they don’t grow up feeling like, well, me!
I want to make it clear that for the most part, I am positive and happy with so many aspects of my life, but there are things that affect me, and probably always will. I just need to be a bit kinder to myself and realise that it’s ok to feel like this sometimes. I give so much advice to others that I almost feel I shouldn’t have these vulnerable moments, but I’m only human.
I will always use this platform to advocate for autistic rights and equality in society, and hope that a time comes when this is truly embraced.
Thank you for reading and following this page. So many of you feel like part of the page rather than followers, and I appreciate you more than you know. It’s humbling that other people take the time to read and share content, interact with posts and share their own experiences.