Home-Start South East Dorset

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.

PDA Profile

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 only human!

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.

Wishing you all the best weekend!

The Kids Are Alright!

I have entitled this post ‘The Kids are Alright’ because I am slightly frustrated about people suggesting that by my children being autistic, essentially they are not alright. And the worst part is, I get spoken to as though somehow ‘I’ am the one who thinks this.

“So what are your ‘concerns’?”

“They don’t look autistic.”

“He’ll be fine once he’s at school.”

“What behaviour does he exhibit? Oh, I wouldn’t worry about that!”

“Isn’t that just (x) year olds?”

I had all of this with my eldest…until he got older and his behaviours became more obvious to the outside world. I am now going through this with my youngest. It doesn’t get easier…and by that, I mean dealing with other people, including the ‘professionals’.

People compare the two children all the time…

“Oh, but the eldest is much worse!”

I have shared a few posts recently, explaining what the term ‘spectrum’ actually means because I am extremely fed up with having to explain to people that these two children experience overlaps in behaviour, but they experience autism in two very different ways.

“Isn’t the youngest just copying the older child?”

Aaaaargh. No. As I said, there are overlaps…but these two children couldn’t be more different. One may be more obvious than the other (currently) but that doesn’t make one more autistic than the other. They have their own struggles and difficulties.

As always, there is just TOO much to go into. As an example, my husband filmed my children this evening BOTH having meltdowns at the same time. My youngest screamed, threw things and was EXTREME! My eldest screamed and cried, but mainly ran around the room finding places to hide…under the table, in the gap between the fridge and the wall, under their tiny table and chairs, between the couch and wall…

I actually have a bruise on my head from where my youngest threw my phone at me last Friday, during a meltdown which started because he didn’t want me and his brother to build a Lego dinosaur. It took me to the ground…and I sobbed. My eldest asked if I wanted a hug and kiss to make it better. He is very sensitive and kind, but also very black and white. In his mind, the hug and kiss was all I needed, and everything was better now, despite the fact I was still sobbing and on the ground, clutching my head. My youngest paused, but would not look at me. He continued to shout, scream, kick and throw…just so angry and destructive. For his safety, and ours, I placed him in his bedroom where the meltdown continued, but I could supervise from a safe position.

My eldest kept pushing me earlier because I said he couldn’t play his video game. He was verbally rude and then headbutted me in the back. I got very angry and he immediately said sorry. I know he doesn’t want to hurt me, but it’s like much of the time, he just cannot handle any emotions (despite all the work we do on this) and feels compelled to be rude or physical.

He has vocal and physical tics that would absolutely meet the criteria for Tourette’s. He has so many…and sometimes these can be replaced by new ones. At the moment, everything is poo and wee.

“But that’s normal for all kids isn’t it?”

Yes, all kids go through that phase, and find it funny…but he is relentless. And it gets placed into every part of conversation and every day life so casually. Much of the time, he doesn’t even realise he’s doing it. It is very hard to discipline children who can’t acknowledge, or understand, what they are doing wrong.

Without repeating details I have shared several times before, my eldest is ASD, I believe PDA, and also has very obvious sensory processing issues. We believe he may also have Tourette’s and Dyspraxia.

My youngest is generally a dream child. He can follow instructions, ask questions and interact on a level my eldest never did. His gross motor is pretty good. He has a love for crashing toys, breaking things and making loud noises. He has a lot of compulsions, and has to follow through behaviours that he knows are wrong…he even says sorry in a worried voice immediately after exhibiting the behaviour as I think he genuinely feels bad…or knows he will be told off. Again, it is so tricky disciplining a child who just can’t help themselves. He has sensory difficulties, particularly with regard to noises and touch, or things against his skin. He hates plasters and cream…and if I need to apply anything to his skin, I have to be really sneaky, hold him down or wait for him to be asleep. If he catches me doing something like this, a meltdown is triggered. He cannot be reasoned with, for example to apply cream because it will help his eczema. He has some OCD behaviours as well. Tasks must be completed properly…and if he starts something…it must be finished.

For example, he is obsessed with wipes, and is very obsessive about which ones he uses. If he has a wipe in the room and you give him another, he will go mad until he gets the specific wipe he wants. If this is dirty and removed because it is not okay to use, he will meltdown, or at the very least have a tantrum. He drags out tasks and activities…and sometimes it feels like he is using delay tactics. At bedtime this evening, his wipe was not folded correctly over the side of his bed so he would not settle until this has been resolved. As he got out of the bed to tend to this matter, Daddy continued reading their bedtime story, and my youngest lost it. He comes across as very controlling, but there is a huge need for him to experience things in a certain way and/or routine. If you carry him over a step, he must go back and walk on that step before he can move on with his day. If you put his shoes away, he must take them back to the place he took them off, and put the shoes away himself, arranging them correctly. He requires a lot of preparation and input before completing absolutely anything.

“But your children sleep well. Don’t autistic people normally struggle to sleep?”

“But your children sometimes cope with spontaneity…so how can they be autistic?”

As a teacher, parent of autistic children, and autistic adult, I can tell you with authority that not all autistics struggle with the same things. Also, MY children were born to parents who really got them and put strategies in place from an early age. I am sick of out of date criteria being applied to autism, like it neatly fits into a checklist. My children still stand out for various reasons, but they are able to ‘fit in’ a lot better than they naturally would because of what we have put in. I am told that if you appear to be functioning or responding to strategies, you will not receive a diagnosis of autism on the NHS.

I say, define ‘functioning’ and ‘coping’. I am a woman in my 30s who ‘copes’ with a lot. I’ve studied and held down responsible jobs…but is there any consideration for just how hard life has been and what a struggle it is every day to exist in this world? Is there any consideration for the physical, emotional and mental toll this takes? I can put on a good show…because I’ve spent a lifetime perfecting it! And I am now teaching my children these skills. It won’t, however, change who they are and how they will feel as autistic people.

I still have an issue with the entire process, and general attitudes towards autism. Don’t see it as a burden…harness it. Don’t deny people their precious diagnosis because you are worried about funding. Help people to identify who they really are, putting interventions into place early. In fact, I don’t even fully agree with interventions! Let’s make the world more ‘neurodiverse friendly’. Why does education require students to sit still all day and regurgitate information like little robots? Why are children who struggle to do this viewed as ‘troublesome’ or unable?

We don’t need to waste money trying to cure autism, or work out how it came to be. We need to support people and create an environment where all people can thrive.