Why I am so sick of the ‘truther’ community

I’ve always had alternative views. I don’t think we can be 100% sure of anything. This year has, for obvious reasons seen a rise in professional conspiracy theorists who think they are incredibly awake. They think the coronavirus doesn’t exist, that Bill Gates is a murdering psychopath and that Donald Trump is here to save mankind from human trafficking and is (was) about to arrest Madonna for unspeakable crimes against children. Far be it for me to say I know what goes on in the world but there does come a point where your mind is so open that your brain falls out.

Unfortunately, my partner has got caught up in this nonsense. To the extent that he cannot countenance my opinion that Trump needs to go because he’s an odious, bigoted narcissist. It actually has put a strain on our relationship. I spend my days looking after our 10 month old daughter whilst he flits in and out, talking to people (other people who are incredibly ‘awake’) on LinkedIn and largely ignoring us. It’s beginning to really get on my nerves. To put it plainly.

To the blinkered Q people, all I can say is the following.

  1. Trump is a vile man and he doesn’t care who knows it. He has set Americans against each other like no other president.
  2. If you don’t judge people by their words and actions, a dangerous premise materialises by which people can say and do nasty, horrible and even criminal things and be given a pass because ‘they’re the chosen one’. In case you didn’t already discern this, that’s a cult dear readers.🙄
  3. if it looks like a duck and quacks like a duck, it generally is a duck.
  4. STOP telling people that they are evil because they are worried about Covid 19 or because they wear masks. You don’t get to tell people what God thinks. Just stop.

What my partner doesn’t realise is that these narratives aren’t new. There was going to be an apocalypse in 2016, 2017, 2018 and 2019 as far as I know. Luckily, during those years he (and I!) were at work. He was not taking to clinically unwell people on LinkedIn. And I was not feeling angry about it.

This is not going to be a (too) long rant. I’ll just leave you with this thought. The fact that Trump lost the election removed a weight from my shoulders that I never knew was there. I’m pretty sure my intuition is more potent than complex numerology sequencing 🙄

Children grow up so quickly. Too quickly to waste your life engaging with people who abandon logic to the extreme.

Sometimes I look at other people’s lives and wonder why mine can’t be normal

I don’t usually spend my time feeling envious of NTs. But sometimes, I just want to be normal. I want to have a normal life with normal relationships. None of these things seem possible for me. I either end up with people who find me mysterious. It doesn’t work out. Or people who find me unsettling. It doesn’t work out. Moreover I feel like a car crash who can’t have a normal settled relationship like other people.

More recently I have discovered that I probably have ADHD like my second youngest daughter. This adds to everything else the realisation of why it’s almost impossible for me to be organised. My head can be a scrambled mess.

I’ve spent the last two years trying to have a relationship with a man who I actually love and want things to work with. It has been nothing short of heartbreaking trying to negotiate this task. He’s 11 years older than me but brings this up frequently. Our life goals are different, our outlooks are different. Hell, even our political standpoints are different. If one of his children was severely autistic, he told me. He would have had them adopted. I don’t actually believe this but it’s still not something I wanted to hear. He finds me unsettling because I just don’t seem strong or confident enough. I need to be looked after. I’m childlike. And I don’t laugh at the same things.

In the midst of all this, we had a baby. She’s a lovely little thing. I love her so much that it hurts my heart. As I do all my children. Obviously the situation is now more complicated than ever.

He says we won’t work out but he also cannot seem able to let me go. This has always been the case. It leaves me confused, feeling unworthy. And, in truth this situation is shredding my self esteem.

I end up wondering who I am or what I’m doing in this relationship. Waiting around to see if he becomes more consistent with me. He never does, he just tells me how even though he loves me I don’t make him happy enough. Then later apologises. Rinse and repeat…

I have lost myself in the process of this whole thing. And I can’t help thinking that if I wasn’t autistic, I never would have. I would have found the right person in the beginning. Life would have made more sense. I would have a secure home life. Or maybe not….

 

 

Tips on how to get educational provision for children with SEN

There are many people in this world who believe that when your child receives a diagnosis, they will suddenly become the beneficiary of all kinds of help and support. Sadly, this isn’t the case. So here are a few tips on how to negotiate the system we have to work with.

The first thing, the most important thing to remember is that as a parent, nobody knows your child better than you. And nobody knows what’s best for your child apart from you. And finally, you are the ONLY person who can advocate for your child without conflicts of interest muddying the waters. One of the advantages of being autistic myself in these scenarios is that I’m never swayed by the professionals because in my head, I know I’m right about everything(!) And my obsessive streak comes in handy too because I am like a dog with a bone and will never give up until my child has what she needs.

So, know what your child needs and do not be swayed from that thought.

You have to learn very quickly how the system works. There is a way to negotiate this system, which starts with realising that when accessing educational provision, local authority staff can become quite hostile the minute you suggest that your child needs costly support or anything they do not see as ‘standard’. I won’t go too much into my own struggles except to say that I’ve won two tribunals against our LA and they agreed to name the school I asked for the third time.  I was asking for an out of county provision.

Local Authority staff will tell lies that you just have to ignore. For example, we don’t provide X, your child is too young for an EHC plan, we don’t want to label a child, etc. LAs are required to view a child as an individual and they are not legally allowed to have blanket policies. And sometimes you need to remind them of this. In writing.

Many moons ago, when I was trying to get ABA into my now 16 year olds (then) statement, I talked to another family whose twins were both doing ABA. I remember clearly their words to me

’The LA should be regarded as a cross between Satan and Hitler. Have as little to do with them as possible, except to get your child’s legally binding Statement into place’. *a statement was the old name for an EHC plan.

Certainly, this is a cynical approach. But did it help me? Absolutely, it did. I became uninterested in what the LA were up to because it was clear they would do anything to avoid helping my daughter in order to save money. In the run up to our first tribunal, the one to get ABA, I used the data protection act to get the LA to cough up my daughter’s file to see how they had made decisions about the non existent provision they had (not) put into her statement. I discovered a hand written note from the LA’s own Educational Psychologist which said that ABA was ‘too expensive’, that it would ‘set a precedent’ together with personal comments she felt fit to write about me(!) I may be quirky but this was supposed to be about my daughter!!

The fighting never ends but I would like to offer the following tips when trying to access provision your child needs. This is specifically regarding education. I will do advice on Disability Living Allowance at another time.

– Find out who your child’s case worker is and keep your correspondence with them via email

– keep correspondence to email only. If something was said over the phone or in person it did not happen. Or at least, you cannot prove it was said.

– keep your contact with them to a minimum. They will drain you and you need your energy for the fight to get what you are rightly asking for

– do not be swayed by emotional blackmail shit like ‘oh, by taking the council to tribunal you are depriving other kids of what they need’ often said by people who work for the council.

– In the run up to an appeal / tribunal make sure not to give your case away. Don’t bother to attend meetings with the LA unless you have reason to believe that they intend to change their position. Which occasionally they do but often they don’t.

– use the DPA to dig up information that the LA would prefer to remain private.

– know the law!! Learn the law. This is your key to getting what your child requires. If the LA says or does something illegal then write to them telling them how they are wrong and cite the legal aspect. They rely on people not knowing this!

– If LA staff / representative says something that sounds shady/ incorrect/ bullshit then write them an email asking them to clarify or confirm if this is actually their position. Anything they say in writing, they cannot easily take back.

– When you write an email, copy in as many people as you can. The more people who are copied in, the harder it is for them to tell lies or say things that will make them look stupid, unprofessional or not transparent.

– remember that you are your child’s best and only advocate.

At a time when LAs are making cuts, the council will make it hard for you. But this is not your child’s problem! And your child is entitled to a level playing field.

I became very disliked by certain LA staff. One in particular would sit at Annual Review meetings and make repeated digs at me. I was seen as tricksy and awkward. Did I care? No. Do I see her now? No. Does she even remember my daughter now? I doubt it. She’s not the one who still lies awake at night worrying about her! There are times and places for popularity contests and this wasn’t one of them so don’t be intimidated.

Where it all began…..

Or at least, as far as I knew! I had never even heard of Autism until I had my oldest daughter, Lorna who is now nearly 16 years old.  Lorna was a lovely, beautiful, affectionate little baby and she is still all of those things. But as she got past one year old I began to notice that she was completely differently from other toddlers her age.  I would take her to toddler groups and really struggle to get her to sit down for any length of time.  She would run around the outside of the room, collecting toy spoons until she couldn’t carry any more. She was unable to imitate either adult led activities or those of her peers. I began reading and researching, which is what I always do when I don’t understand something. Slowly it dawned on me that Lorna had Autism.

Even though Lorna was only 2, I could see that her deficits were going to cause very significant disability for her in later years and throughout her life. I decided I wanted her to do ABA (Applied Behavioral Analysis). When I mentioned this to our paediatrician she simply stated that ‘Oh there are many weird and wonderful interventions out there. In the States they inject kids with secretin’. Undeterred, I was determined to get a diagnosis so that Lorna could begin ABA. It was the only thing that could help a child so hard to reach. I was never one of those parents who felt that ABA could cure Autism but I wanted Lorna to learn some basic skills so that she could begin to enjoy her life. At this point she spent her entire day stimming.

Eventually I took her to see a specialist developmental paediatrician in Kent at my cost and she was jointly assessed with Auriol Drew, a SALT (Speech and language therapist) with great insight into the condition. Lorna was subsequently diagnosed with classic Autism. The doctor commented that although Lorna could not play she was incredibly bored because she didn’t know how to spend her time and could only do an activity’s with intensive 1:1. I was more determined than ever that ABA was the only starting point that would help Lorna.

We began ABA shortly afterwards and I saw amazing results in my child. Within 6 weeks Lorna was verbally requesting items, responding to her name and saying ‘mummy’ and ‘daddy’. She had previously been non verbal. I felt as though angels had come into our house to help her. And to this day I know that ABA has improved her quality of life so much.

However, I soon found myself in the position of having to fight the Local Authority to be able to continue funding the program which costed up to £50,000 a year.  This was a stressful process for me. I was only 23 years old and I could not understand the cynical, indifferent and sometimes downright antagonistic attitude I came up against  from LA staff. I had to deal with LA Educational Psychologists writing personal comments about ME in reports which were supposed to be about my daughter. Apparently I was passive and did not provide them with a drink when they visited our home. What this had to do with anything I have no idea. Later, when I did a data search in preparation for tribunal I found hand written notes from the EP which stated

’The LA cannot afford to fund this. It will set a precedent and cost loads’

We live in an area where there isn’t any Autism specific provision for autistic children and it’s especially sketchy for those at the severe end like Lorna. To cut a long story short, I won two tribunals against our LA and they had to provide what I was asking for. In recent years I pressed them to provide a placement at an independent residential Autism specifics school which this time they agreed without a tribunal, thankfully. Lorna is a very complex child but she is intelligent and is doing very well.

I will at a later time write a post about how to negotiate the process of getting educational provision and benefits that your child may need.

Hello to everyone ND and NT 😊

I have decided to start this blog to help others who are trying to find out about Autism and what the condition means. Maybe you are the parent of a child who is on the path to diagnosis. Maybe you suspect you have the condition yourself.

Obviously I can only speak about it from a personal point of view. I feel that women on the Autistic spectrum are massively underrepresented in the media and so people don’t know very much about how autism presents in girls and women. Since I am autistic and have two autistic daughters on different parts of the spectrum, I feel that I can give some much needed insight to those who might be seeking it.

I will be posting about how my condition affects myself and my daughters and also about how to secure educational provision for your child if they have an ASC and how to apply for other resources that are offered to children with disabilities. I know that we all have individual situations to contend with. I hope the information I’m going to put out there may be of some use to you all.