All Things Autism – Janet Willicott, Navigating SEND Health and Well-being.mp3
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Speaker 2
00:00 – 00:37
Hello this is Anna Kennedy we’re talking all things autism and I am in my charity office today and I have a special guest called Janet Willicott but before I go over to Janet just to give you a little bit of feedback what I’ve been up to in the last few weeks. So we finished our walk cycle challenge so there was a group of us my volunteers and we were walking, we were cycling and Angelo joined us as well for the whole month of May. We actually between us walked and cycled 1147 miles between us.

Speaker 2
00:37 – 00:50
We could have driven to Hungary or we could have flown to Rome. I think I probably would like to fly to Rome obviously because my parents are Italian So I just love Rome and I love Italy. I love the food. I love the fashion.

Speaker 2
00:51 – 01:06
I love everything about Italy. We also have started a new competition. So if you’re interested, check out our charity website. It’s the AKO Sugar Rush Create and Bake competition.

Speaker 2
01:07 – 01:30
The first prize will be an AKO Champion Baker apron and T-shirt and the runners up will get a T-shirt. Again, we’re collaborating with Born Anxious. So what I’m asking is if you can make a cake, a brownie or a cookie that you create and it’s your interpretation of autism. It’s a shame I’m not going to be able to taste them all.

Speaker 2
01:30 – 01:43
But if you can create it, if you check out the charity website, all the information is on there. And we have three wonderful judges. So we’ve got Casey Ainsworth, who’s one of my charity ambassadors. She’s an actress.

Speaker 2
01:43 – 02:06
Her son’s on the spectrum and her husband. And we also have Richard Mylan, the lovely Richard and his son Jaco. He’s an actor, but also has created some wonderful documentaries called Richard and Jaco. So if you would like to enter, oh yeah, and one of our other judges is the lovely Ionica Adriana.

Speaker 2
02:06 – 02:23
She is now known as the singing baker. She could never bake anything and for COVID, she actually baked 500 cakes. different ways of Victoria sponge. So she’s going to be excited to see what creations you have.

Speaker 2
02:23 – 02:41
So check out the charity website, the AKL, Sugar Rush, Bake Off, Entry Form. And one of the thing I just wanted to check with you is actually not check, share with you. I’ve got a bit of a tiredness brain. I’ve been up since three o’clock this morning, so feeling really tired.

Speaker 2
02:42 – 03:27
The Born Anxious again, we are working with them to create Thank you t-shirts so we’re going to be fundraising for the NHS and also for our charity both my sons you’ll see them with the beautiful t-shirts they’re label free and some beautiful really beautiful colors so i’ve got a pink one patrick’s got a red one angela’s got a blue one so basically if you check out the www.bornanxious.co.uk you’ll see the 100% organic clothing t-shirts they’ve got bags they’ve got sweatshirts they’ve got jogging bottoms but our t-shirts are the thank you t-shirts to say thank you to our frontline workers. So my guest today is Janet Willacott.

Speaker 2
03:27 – 04:16
She is diverse, open, transparent and an equality campaigner across all communities, director of a non-profit global organisation. She was invited to stand to be two MP candidate positions in 2019, but after her interview and political forecasting, she opted to continue with her PhD in education and health instead, writing, reading and research for a new UK Accountability Act for the 1.4 million children and young people who are forgotten about when it comes to securing their educational and health outcomes. Janet now supports the APPG special educational needs and disability for the UK Parliament and she divides her time with her son and her new family and wife-to-be whilst also enjoying travelling, barbecuing, food and extreme sports.

Speaker 1
04:17 – 04:17
Thank you, Janet.

Speaker 2
04:20 – 04:28
You are a busy bee. I was reading your bio, I thought, oh my word, how is she fitting all of this in with everything else that you do? So, Welcome.

Speaker 1
04:29 – 04:36
Oh, thank you so much. And thanks for inviting me. And it’s a pleasure to be here. And welcome to all your listeners as well.

Speaker 1
04:36 – 04:41
So, yes, well, indeed, we find ourselves in strange times.

Speaker 2
04:42 – 05:02
We do because you couldn’t see me in the studio. Then we had to cancel as I’ve had to cancel all my speakers coming to visit me in Covent Garden. So now we’re doing it via Skype. So before we talk about autism, before we talk about everything that you have been doing, tell me a little bit about who is Janet?

Speaker 2
05:02 – 05:03
Who are you, Janet, and where are you from?

Speaker 1
05:04 – 05:38
Well, so I originally hail from Southern Africa. I was born in Harare in the then country of Rhodesia, which is now known as Zimbabwe. just after the civil uprising and war, my parents thought it best to leave and we settled in South Africa. I completed my schooling and higher education and decided to travel a little bit.

Speaker 1
05:39 – 06:42
My mother is a German Jew, my dad was a Roman Catholic uh then humanist uh british man from england and so what a combination um you know i i was born into a wealth of diverse diversity already so you know i it was delivered to me um and i grew up in in my surroundings and certainly in south africa though in that era the difficulty of course was living amongst apartheid. That was extreme and very difficult so you know that diversity comes into my bow and one of the primary reasons I decided to leave South Africa was me not understanding why human beings just couldn’t accept each other and regardless of race, culture, creed or or any other positioning as they felt.

Speaker 1
06:43 – 07:21
I now find myself, after leaving South Africa, I settled in Germany. I studied in Germany and then started reporting for a German television company and production company. And I decided to come to the UK for a two-month holiday to visit my grandmother, my father’s parents, and ended up staying. So I’ve been in the UK now for, I think it’s 27 years.

Speaker 1
07:22 – 07:28
So well and truly woven into the fabric of UK and the British society.

Speaker 2
07:28 – 07:32
How did you find it when you came over to the UK? Did you settle quickly?

Speaker 1
07:33 – 07:53
Well, I felt free, unbelievably free, free to be myself, free to be or to express myself. I didn’t feel anxious. I didn’t feel that I was looked down upon. free and most certainly settling in London.

Speaker 1
07:53 – 08:15
What a great experience, you know, coming from Africa and then finding myself in London is a complete mind shock. But wow, I loved it and I just loved the freedom of expression and how everybody just got on or just accepted each other. It was fantastic and I settled, you know.

Speaker 2
08:15 – 08:22
And that’s lovely to hear. So obviously you’re still settled now. I do.

Speaker 1
08:22 – 08:42
So I, in between studying and working, I decided to take a break. I was working on various projects within the entertainment and hospitality industry. One of them was the setting up of the Millennium Dome, which is now the O2. Yeah.

Speaker 1
08:44 – 09:11
That was very, very tough. And I cut my political teeth on that project. Oh, I tell you, that’s where I cut my political teeth and financial understanding of how governments work. And shortly after that project, I thought I was going to take a sabbatical, and indeed I did, and ended up in Greece.

Speaker 1
09:11 – 09:36
Some people say Shirley Valentine. But, you know, after an unsuccessful relationship, still friendship-wise, I decided to move back to the UK and had my son Bastien. So Bastien is almost 17. He is five weeks from being 17.

Speaker 2
09:36 – 09:39
Oh, so you’re in teenage years.

Speaker 1
09:39 – 09:56
Oh, I’m in teenage years. Oh, dear me. Covid and teenage years blend so fantastically well. But, you know, so I am pretty much or have been settled now, you know, after my short break.

Speaker 1
09:57 – 10:10
I live in North London, very much settled. And my son now attends college and is studying to be a chef. Wow. OK, so he’s cooking you some meals then?

Speaker 1
10:10 – 10:22
Absolutely. You know, roast dinners, puddings. Oh, wow. I’m starting to develop a little bit of a COVID diet syndrome going on.

Speaker 2
10:22 – 10:34
Oh, well, I actually heard apparently they’re saying in COVID that people are generally putting on 19 pounds, but I couldn’t believe it. I thought 19 pounds, that’s an awful lot.

Speaker 1
10:34 – 10:44
No, no, no. I think I’ve probably picked up about two or three. That said, I’ve restarted yoga, so that’ll come off quite quickly.

Speaker 2
10:44 – 10:52
So how did you get involved in the SEND world, the Special Educational Needs and Disability world? How have you become what you are today?

Speaker 1
10:53 – 11:19
Well, so whilst I was pregnant, the doctors and consultants came back to me. after six failed marriages previously. I had long-term pregnancies and then miscarriages thereafter. The underlying issue was founded that I had a blood condition.

Speaker 1
11:19 – 11:43
They then tested whilst I was pregnant with my son, Bastian, and said that I was having a high-risk pregnancy. When you think of a high-risk pregnancy, what is a high-risk pregnancy? You think, oh, anything between one out of 10 million. But when the answer came back of one in 10, that was quite profound.

Speaker 1
11:44 – 12:19
I was very much going to have Bastian regardless, and my son was born. And for the first two, three years, he was known as an enigma across the medical world. And I, as an instinctive human being and mother, as you do, you think, you know, you know when something is not right. And you can, you know, fight and argue and challenge and, you know, the system that is set up, the medical system that is set up in the UK sometimes doesn’t always understand where the mother is coming from.

Speaker 1
12:20 – 12:41
And I then got to work begging and pleading and knocking on every door possible with every door being slammed in my face. My son being tested on the worldwide genetics program, every other test, every other genetic series and links, nothing was to be found. And… How frustrating for you?

Speaker 1
12:41 – 13:07
It was very frustrating when all I was told my son can and can’t equally at the same time. That is very complex in itself. After a while, I eventually carried on knocking six years later and eventually Cambridge University probably thought, we better just listen to this woman because otherwise she’s never going to go away. Let’s just take her on board.

Speaker 1
13:07 – 13:24
And they set up a genetic testing program. And six years later, I got a telephone call from Cambridge University. And they said, well, we don’t know how to tell you this. And I’m like, oh, what was the issue?

Speaker 1
13:24 – 14:09
And they said, well, I wasn’t quite sure who was more excited, either Cambridge University or myself. And it was then discovered that my son, Bastian, had, through me knocking on doors, was diagnosed with a very rare, complex neurological syndrome called SETD5. And at that stage, there were six people in the world, and we are now 240. And so this whole process then led me on to challenging for a suitable education, challenging for suitable health care.

Speaker 1
14:09 – 14:11
Can I just ask what is that condition?

Speaker 2
14:11 – 14:14
So for people listening in, what is that condition?

Speaker 1
14:15 – 14:54
So set D5 is the set domain containing five. So in your brain, the center of your brain, your critical formation region, that the part that makes you, you, the very first part, everybody has five dopamine receptors that make you, you. And Bastian’s domain five or dopamine five receptor is broken. The DNA is broken, but he doesn’t have the RNA, which is the backup of the DNA to repair it, which makes it really, really rare.

Speaker 1
14:55 – 15:22
And coupled with that, he’s also got dysgenic corpus callosum. Now the corpus callosum in the brain is the thick white band that links both left and right hemispheres that enables you to read, write, cross over your midline to analyze, to speak. So that’s also damaged as well. So he’s got a combined rare disease and currently there are only two people in the world with this rare disease.

Speaker 2
15:22 – 15:25
So how does it affect him, if you don’t mind me asking?

Speaker 1
15:25 – 16:03
So the effects of CETI5 and dysgenic corpus callosum, Bastien can’t read, he can’t write, he is deaf in the left ear, he has difficulty with his speech and has to seek therapy from a SALT, which is a speech and language therapist. He needs occupational therapy, he needs physical therapy, and profoundly affecting his learning. abilities. So going to school, socializing, very much autistic traits, although you can also have a diagnosis of autism.

Speaker 1
16:03 – 16:45
That said, the new research that’s coming out, who I’m linked with in California, in San Diego, is a prominent scientist looking at set D5 and autism. And it’s now thought that ZD5 within the critical region is looking at one of the origins that is associated with autism. So through me not giving up and being at my last legs, and it just shows that do not give up. Keep knocking, and if you can’t find a way, make a way.

Speaker 2
16:45 – 16:53
I always say that. Knock on every door. If somebody says no, find somebody who’s going to say yes to you. There always is someone.

Speaker 1
16:55 – 17:57
I have found myself in a very unique position in that my studies in law and then my studies in public health, and then my further studies in environmental psychology, and have all led me to now be in the position where I am. So I come at special educational needs and disabilities, or my journey that is, comes with it knowing and understanding law and legislation. It comes knowing public health and associating all health needs, medical needs, clinical needs in line with the legislation and in line with educational needs and then also having environmental psychology and neurology and blending all of those studies together and gives me the unique opportunity to be in a position to help people.

Speaker 1
17:57 – 18:49
But most importantly, where I am today, is the setting up of my organization and business, which is then looking at supporting parents who have children with autism, rare disease, other special educational needs and disabilities, comorbids, anxiety, mental health, emotional well-being within school, within home, within society, and blending all of that. And how I got to this particular point was Bastion was denied an education Now, when I say denied an education, he was denied an education suitable for him. And in the UK, we have what is called special schooling and mainstream schooling.

Speaker 1
18:50 – 19:12
Unfortunately, what we don’t have is schooling for children who don’t fit the model in main or special. What happens then? You have no other platform to turn to. was told over and over and over again that I was selfish and not caring and I didn’t want any education for my son.

Speaker 2
19:12 – 19:17
Not caring? I think you’re over caring. I think it’s just that frustrates me when I hear things like that.

Speaker 1
19:17 – 20:05
It’s very, very frustrating and You know, and listening to this time and time and time again, and going to court and begging and pleading for an educational placement, which led me to 11 court cases, two of which were tribunals, challenging the local authority. And the reason I challenged the local authority is because Bastien Fitznee, the model, And he, although he has profound learning difficulties, on the flip side he’s also equally intelligent. What do I do then? And I then had to pull every available resource that I knew and that I had studied before and I thought I have to do something.

Speaker 1
20:05 – 20:19
I knocked on every door, legal, charitable, organisational, human rights, possible, and was rejected. The only way forward was to do it myself.

Speaker 2
20:21 – 20:23
Yeah, very much like my husband and myself.

Speaker 1
20:23 – 20:35
It’s just so frustrating. Absolutely, very much similar to your story, Anna, and you know, I’m so thrilled and proud that what you have achieved, and it’s remarkable really,

Speaker 2
20:36 – 21:24
um because of the love that we have for our sons or our daughters it’s just like we just keep pushing but for some parents it’s just so overwhelming um that they can’t navigate the system because it’s just like they’re trying to juggle so many hats you know they’re I think there’s a certain type of parent like ourselves I don’t know how and I don’t know where it comes from inside of us but there are some parents who just can’t cope with that and it’s just like they’re trying to keep their job they know they’re trying they’re married or you know they’ve got other siblings as well and then sometimes the siblings think that you know they don’t want to bother the the parents because you know they’re trying to navigate this so complicated system there must be an easier way of doing things. It just seems like they’re just making it harder and harder for us.

Speaker 2
21:24 – 21:51
And now, because of COVID, and there’s so many more parents that are really worried now about what’s happening because of the easements, it just hurts my head to think about all these parents that I’m talking to that are so frustrated and so anxious about the future of their sons or their daughters. I know. How have you found with COVID that people are contacting you?

Speaker 1
21:51 – 22:38
Well, you know, whilst COVID has still, you know, whilst lockdown and COVID have been ongoing, I have still been, you know, representing families in court. I have to say, albeit, I’m now representing families from my bedroom via an online link directly to the judge’s house, which is That’s surreal in itself, sitting in my bedroom in a formal court setting. But, you know, that’s still going ahead and that’s had to be quite a big adjustment, getting used to the whole online court system. But, you know, I think somehow, somewhere, COVID is meant to, it’s not a great leveler because there are so many differentiated levels across society.

Speaker 1
22:38 – 23:29
But what it has brought for me a clearer, better understanding is that we have to work together. And it’s that community spirit that brings us together, that brings an understanding, and everybody has a role in society. Everybody, nobody is more important than anybody else. From the shelf stacker to the collectors of our recycling, to the doctors, to the stores that keep open for our pets, from the dentist, emergency dentistry, except everybody has a role and everybody is deserving of their life to be included in society and I think that’s what COVID

Speaker 1
23:29 – 23:33
has highlighted for me and also a measure to stop.

Speaker 2
23:35 – 24:04
Can I ask you, sorry to interrupt, it’s just we’ve got so much to get through. Can I ask you, parents that are listening in, that are navigating, they might be at the start of the special educational needs and disability journey or they might be in the middle or they might be going to tribunal, are there any tips or any strategies that you can share in your opinion and because of your experience that parents can take note of?

Speaker 1
24:04 – 24:19
Most certainly. And I would say, first of all, Do not be afraid. Lose the fear. The people who you are talking to or you are writing to or you’re communicating with are human beings.

Speaker 1
24:20 – 24:41
Lose the fear and everybody’s equal. You sit at the table equally and that’s the first part. Then do not give up. The tip I would say is bypass the send officer and go straight to the line manager or go straight to the director of services.

Speaker 1
24:42 – 25:29
That way you keep bringing attention to the inadequacies within the special educational needs department or the education department or the school in question or the college in question. Most times time is wasted trying to negotiate or structure a challenge with often the junior of employees who struggle to understand legislation or who don’t know legislation or often haven’t received their training. Go to the top straight away and seek first off to always say the courts favour joint collaboration in a timely and effective manner. that’s where you start.

Speaker 1
25:30 – 25:49
Set the scene first and collaborate and highlight that collaboration because if you are collaborating and the other party, the government or healthcare or your local authority or the school are not collaborating, you then stand in better stead. So that’s what you need to offer them first.

Speaker 2
25:49 – 26:46
And also if you find the whole system really overwhelming there’s lots of people out there that can support you might be another parent and you know social media is a fantastic platform as well to ask for help so if you’re finding the whole process so overwhelming that you can’t think and you’re looking at it thinking I don’t even know what this means please seek out help there’s a lot of smaller charities out there that are willing to help And also something else that I would say that I didn’t know about when I first started on the journey, keep all your information together, put it in chronological order, whether you do it via paperwork, whether you do it online, keep it in chronological order. And when you speak to people, whether they’re the speech and language therapist, whoever it is that you’re speaking to, always back it up with an email so you’ve got a point of reference almost like that you’re in court already and you’ve got your evidence ready because a lot

Speaker 2
26:46 – 26:59
of people tend to think I’ll speak to them over the phone and then that conversation just gets lost because you haven’t got a log of it, there’s no proof of what’s been said or what the other person said, the professional online. Would you agree with that Janet?

Speaker 1
26:59 – 27:23
Oh absolutely Anna and I you know I could you know that that is the most profound tip of all is from the first day of collaboration or trying to mitigate or trying to find a way forward, write everything down. Put it in chronological order. Everything must be in writing. Everything must be evidenced.

Speaker 1
27:23 – 28:17
And although a lot of people are afraid to record, the legislation for data protection allows parents to record their meetings or their conversations because most often people forget what they say or forget what was said. And that although you can’t legally share that recording with any other third party, what you can do is use that transcript or you can transcribe that recording and you use that for your notes and keep that as evidence because, you know, at the end of the day I hear parents or represent parents in court, parents say one thing, the education authorities say another, and then how do we find that evidence? And that evidence that has been then transcribed can legally be used, so you can use that as one way of supporting it.

Speaker 1
28:18 – 28:58
But I again come back to the whole documenting everything and being in a chronological framework, using a chronological order. How this helped me was I eventually was denied all rights to legal jurisdiction within the UK and my only hope to fight for my son’s education was to challenge the UK as a whole. I then took the UK to court via the human rights legislation using the European Court of Human Rights. And it was, I’ve never taken, done an international court case before in my life.

Speaker 1
28:59 – 29:12
And even I was scared. I was petrified. I had no idea how to put together an international legal bundle. But the one thing that stood to help me the most was having a chronology.

Speaker 1
29:12 – 30:01
That is paramount to your securing of placement or provisioning or supporting your child through the special educational needs and disabilities maze as it were. Also, be mindful of the government’s first duty, that’s to keep citizens free from harm. Use that legislation, which I will then link up to your audience later. Also, bear in mind the health principles of 1946, which was ratified by the UK and the UN, which states that the UK has to ensure that health is paramount and education is part of health, it’s not separate from.

Speaker 1
30:01 – 30:25
I go into local authorities and professionals and speak on this and deliver this information. And I’m surprised to know that not a lot of people know this. So if I can impart this to your audience and they can embed this in their challenge or communication, then they are one step ahead. Can we talk about home education?

Speaker 2
30:25 – 30:51
So you home-educated your child, and obviously now with COVID, there’s a lot of families that are really frustrated and find it quite challenging who are home-educating their children, whether they’re a mainstream child or whether a child has special educational needs. Can you talk about how that came about and any tips that you can give to parents that are trying their very best to home-educate their child?

Speaker 1
30:51 – 31:17
Of course I can. I was faced with placing my child in a environment that was not suitable or conducive to his mental health and well-being. In fact, it would have been far worse and would have made his plasticity of his brain or learning regress. And this wasn’t just from me, but also from professionals and written in professional reports.

Speaker 1
31:18 – 32:03
Sadly and unfortunately, the local authority and Department for Education felt uneasy with that and said, all disabled people are the same and they can all go into the same education establishment. And I, that’s when I thought, no, no, no, no. And I came across what is coined double or multiple exceptionality, which means that your child can have learning difficulties or disabilities, but also be equally intelligent. And so I then had to make a timely decision to either put my child in an unsuitable educational environment or home educate my child.

Speaker 1
32:05 – 32:28
I had never educated my child before, although I have experience in teaching. It is very, very different to teaching your own children at home. And so I took that on board and registered my child as home educated. The first six months, I will add, hand on heart, was absolutely destroying.

Speaker 1
32:28 – 32:48
I didn’t know how, I didn’t know when, I didn’t know what to do. I’d gone from a mother carer to now an educator. My child thought that it was absolutely horrific that his mother was teaching him. However, I then researched a little bit more and found the way in.

Speaker 1
32:48 – 33:11
And home education is probably was the most beneficial for my son, looking back now. And I used what is called pedagogy or embedded learning or embedded education, which, by the way, is supported by the Department for Education. Well, what is pedagogy? What is embedded learning?

Speaker 1
33:12 – 33:48
You can take absolutely any subject, any topic, any item, any object, and you can unpick that item or the object or the subject and break it down into every known curricula or subject in this planet. And for example, I’ll give you, I always use the loaf of bread analogy. And that was the way in forward as a home educating bastion. And I’ve since then gone on to pass this to thousands of other parents up and down the country.

Speaker 1
33:48 – 34:03
So, you know, what is a loaf of bread? If you really think about the complexity of bread, you know, it’s just a bread, half a slice of bread, some jam and a cup of tea. But what is bread? So here you have a loaf of bread.

Speaker 1
34:04 – 34:26
You have to think about agriculture. You have to think about wheat. horticulture, you have to think about chemistry, the physics, the soil, the environment, the weather patterns, farming, tractors, plowing. farm work and we haven’t even made the loaf of bread yet.

Speaker 1
34:26 – 35:03
Then you look at the history of bread, the origin of bread, what is bread, nutrition of bread, geography of bread across the world, religion of bread, how bread is formed, why is it formed, chemistry, science, physics. Then you put together the linguistics, the mathematics, the baking of the bread, the physical properties of bread, the artistry of the bread, and that’s one item. And you’ve covered absolutely every single subject with one item. And you can do that with Lego.

Speaker 1
35:03 – 35:56
Some of the parents that I’ve helped with their children who have autism love, love, love Lego. And you can take a Lego brick and you can break it down to the history of Lego, the science, the polymers, the chemistry, you know, who is building Lego, is it used in the corporate world, is it where, you know, what’s the most famous statue of Lego, the sociology of Lego, philosophy of Lego, psychology of Lego, oh it’s absolutely, so I really recommend looking at embedded education or pedagogy and that is what you can find a way forward, especially during lockdown and home educating and that’s Find your child’s thing, whatever it may be, music, food, art, that’s the way forward.

Speaker 2
35:57 – 36:21
So for people listening in, Janet is going to be writing an article which we’re going to be sharing on the charity website, so if you’ve missed some of the items that she’s been talking about or any links that she chats about, she’s going to be putting it in an article, so don’t worry if you have missed some of the conversation. So people are looking to find you on social media. Where can they find you, Janet?

Speaker 1
36:21 – 36:41
So, well, I’ve got a host of platforms really. First of all, I’ve got some links here. I’ve dotted them down. So my website, it’s www.normal-like-me.com.

Speaker 1
36:41 – 36:54
Okay. And the reason my company is called Normal Like Me, that was born because my son kept saying, I’m normal like me, mommy. I’m just normal like me. And I thought, wow, that’s quite profound.

Speaker 1
36:55 – 37:01
I also have a Facebook personal profile, which is Janet Willicott.

Speaker 2
37:02 – 37:05
It’s W-I-L-L-I-C-O-T.

Speaker 1
37:06 – 37:50
Correct. And my business Facebook page is, if you just type in Facebook and then Normal Like Me Send Research Services, and I will add these links onto the article so all of your audience can log on. Also, with reference to the SEND world and legal pathways, health outcomes and advice and tips, every Wednesday evening from 8 until 9, I have what is called SEND Sessions Live, which is a Facebook page. So it’s SEND, S-E-N-D, Sessions Live.

Speaker 1
37:50 – 38:23
I haven’t currently been doing them. Sadly, my mother-in-law has been really unwell and passed away. So, you know, that’s why the Send Sessions Live has been placed on hold for a while. But, you know, in the next couple of weeks, every Wednesday from 8 until 9, give advice all for free and people can log on and ask me questions and I have a whole host of topics that I go through and all the past videos are there so please

Speaker 1
38:23 – 38:48
log on and have a listen. I’m also on LinkedIn so Janet Willicott on LinkedIn I have an Instagram page which was basically used for home education but I am known as the fiery freckle. I have lots of freckles and I have red hair. So it’s the underscore fiery underscore freckle.

Speaker 1
38:50 – 39:24
I also have an Instagram professional page which is Janet Willicott FRSPH. That stands for I’m a Fellow of the Royal Society of Public Health, which I was awarded last year for my continual research for psychology, special educational needs, legislation. And I am on YouTube, just Janet Willicott on YouTube. I have to say my YouTube has been a bit quiet.

Speaker 1
39:24 – 39:50
I primarily used it for when you introduced me and extreme sports. I love extreme sports. So extreme sports like ultra marathons, anything from 160 miles onwards. So I love running across deserts and I love challenging myself.

Speaker 2
39:50 – 39:54
So, do you get much time to do that then amongst everything else that you do?

Speaker 1
39:54 – 40:22
Well, you know, I kept it, I kept up my sports up until, going up until 2016, but I had to then focus on my son’s education and all the litigation thereof. But I’m, you know, back into the form and, you know, slowly getting back into shape again. And my next extreme sport adventure will be running across the Namibian desert in Namibia. So I’m looking forward to that.

Speaker 2
40:23 – 40:40
Okay, so talk to me a little bit about your son. So he’s 17 and tell me a little bit about, you know, how was, what’s his aspirations? Because I know we’ve chatted a little bit before we came online, but from people listening in, what would he like to do? Where does he want to be?

Speaker 1
40:41 – 41:47
So it’s, I mean, Basim is quite a complex character and, you know, I’m always mindful of trying to balance out him being independent and a 17-year-old, balancing out with his difficulties and also being realistic of what he can achieve. And, you know, sometimes we try to butter our children, we try to protect them and you know, that’s great, but we also have to, you know, know their limitations, but also know when to push them. And yes, Bastian finds it difficult generally, but he’s exceptionally good at making food and loves cooking, baking bread and roast dinners and cakes and experimenting. So it’s great actually because you know some in the mornings I mean I think yesterday or two days ago he made a lovely cheese platter so that was good yeah and you know he’s regularly whipping up something in the kitchen and you know from pancakes to creative desserts

Speaker 1
41:47 – 42:17
so you know with the correct support as I say again Had he not, had I not fought for what Bastian needed, he would not now be in the positioning at this level to want to become a chef. You know, I understand that it’s not going to be plain sailing, but he’s got the ability and he will get a job within a kitchen where he can express himself and also have the support he needs.

Speaker 2
42:18 – 42:22
Okay, so how has COVID impacted on your life with your son?

Speaker 1
42:23 – 43:30
Well, I decided, just as lockdown was announced, that it was best to lockdown together and together, I mean, moving in with my wife-to-be, Michaela, and her two children. because we’ve always you know we have separate uh residences um just for locality of of getting to and from college and for me getting into London and I decided that it’s you know time to move in and and see how it all goes and um so the challenge was learning and understanding each other’s needs um you know using the home education model or pedagogy um building relationships and most importantly, cooking, finding that balance again, that real homestead, going back to basics, you know, baking bread, baking cakes from scratch rather than just using a packet. But also, more importantly, spending time together as a family.

Speaker 1
43:30 – 43:35
And also, it was aided by getting a dog.

Speaker 2
43:36 – 43:52
I was just going to say, so if it was just you and your son and then all of a sudden obviously you’ve got your wife to be and how many children has she got? Two children, so we’re five now. So now you’re five, how did your son cope with two growing to five?

Speaker 1
43:52 – 44:45
Well I looked at the pros and cons of moving in and whilst Bassian was understandably losing some of his space and his comforts. I also thought it more beneficial that he gave up a little bit of his space and comfort for him to be able to forge a relationship or relationships with someone of his own age or near to his own age and that has proved to be absolutely the most beneficial pathway I’ve ever taken really because In some ways, he’s been forced to learn to socially engage, and for Michaela’s children to learn to adapt to somebody who has difficulties. And it’s been a learning process for everybody, and everybody’s come out winning.

Speaker 1
44:45 – 44:52
And, you know, being an inclusive society as we all should be.

Speaker 2
44:52 – 45:13
So obviously you have a busy life and you have you were telling me about all your pets as well what do you do to relax to recharge your batteries because obviously we’re a program about mental health about well-being so how do you make sure that your well-being obviously as as well as juggling everything else that you do is is paramount for you?

Speaker 1
45:14 – 45:48
Well before before Covid I would always generally if I was feeling overwhelmed stressed anxious or just swamped with so much work, especially reading and researching all the time. I would switch off and do a little bit of binge watching on Netflix. Or trying to read a novel rather than a scientific paper. Or just generally putting on some music and my love of making food and cooking and baking.

Speaker 2
45:48 – 46:01
That’s what I would do. When you were younger, what did you want to be just out of interest? Because obviously now your life has taken a path where possibly because of your son’s needs. But when you were younger, what did you want to be?

Speaker 1
46:02 – 46:24
Well, I wanted to be various things, really. I think I remember at the age of eight wanting to be an airline hostess. And then wanting to be an actress on theatre or stage. or then a solicitor or barrister.

Speaker 1
46:25 – 47:04
It’s kind of, you know, where it’s gone is, you know, down the legal route, you know, with health representation or public health and education representation in court. And now, putting all my learned experiences and professional experiences together, and I’m now looking for or reading and writing and researching for my doctorate. or PhD in writing new legislation for the Department for Education which is going to bring about an Accountability Act.

Speaker 2
47:05 – 47:13
I was just going to ask you about that and you’ve jumped in before me. So tell me about how you can see that panning out and how long is it going to take?

Speaker 1
47:14 – 47:58
Well I’ve got my primary data and I’ve now fleshed out my proposals. I had just set an interview with a group of professors and had to explain why I’m doing what I’m doing and they are all for it and understand why we need an accountability act. And it’s really, it’s on the same structuring as what an equality or what the Equality Act is about. Bringing together education legislation, health legislation, mental health, wellbeing, clinical health, bringing that all together under one umbrella for the Accountability Act.

Speaker 1
47:58 – 48:22
So when parents do challenge for their children who have autism or special needs or difficulties, disabilities, rare diseases, and the government doesn’t follow its pathway or its legislation. Currently, there is nothing to hold into account. It just pales into insignificance, the stress that parents go through. Eventually, people end up in court.

Speaker 1
48:23 – 48:53
Everyone loses except for barristers and solicitors. And whilst we need barristers, whilst we need solicitors to fight the case, to fight the cause, Eventually, the government loses as well. And so having an accountability act will ensure that the government follows its own legislation. Because at the end of the day, what we need is early intervention, not reactive intervention.

Speaker 1
48:53 – 49:21
We need early intervention. Invest in the beginning. If we invest in the beginning, if we intervene in the beginning, then our children’s lives later on much easier. They’ll need less resources and they will have more of an independent life as practicably they can be with less stress and strain because parents are struggling.

Speaker 1
49:21 – 49:51
It’s a minefield. With me being a professional and having law and education and psychology and health and the understanding of how parliament works and government works. Even for me, I found it absolutely soul-destroying. And this is why I do what I do, because I know parents struggle.

Speaker 2
49:51 – 49:55
Would you say it’s harder now with COVID as well?

Speaker 1
49:55 – 50:44
Well, you know, let’s be honest, we have to be truthful. And whilst we have the Education Act, the Care Act, all of that now has been superseded by the Coronavirus Act, which really allows the government to do as little as possible or just enough to make sure it’s seen to be doing something. But I want your listeners to know that whilst the Coronavirus Act is temporary, the government can slip through some processes that ultimately ensure that disabled children whether they have autism or rare diseases or difficulties, don’t necessarily always get what they need to get. And there is a way to challenge that, and it’s knowing which legislation to use.

Speaker 1
50:45 – 51:06
And also, if the local authority, if the school or the college in question has the provision already, that means they can legally provide it. They don’t have to use what is called reasonable endeavors. because reasonable endeavours is just simply contractual, not legislative.

Speaker 2
51:07 – 51:16
A lot of children have gone back to school. What’s your feeling about children going back to school? Do you think the schools are ready? I actually saw an interview with a headteacher.

Speaker 2
51:16 – 51:34
I can’t remember if it was BBC or ITV. The stress! The headteacher, she must have been talking about 200 miles an hour. You could see her face was just full of stress, talking about everything that had to be put in place, I just thought this lady looks like she’s heading for a heart attack, hopefully not.

Speaker 2
51:35 – 51:43
But do you think that schools are ready for children to go back yet? I think we should have waited a couple of more weeks.

Speaker 1
51:43 – 52:05
You know, I can come at this question from various angles. As a public health scientist, I am going to say no, we are not ready to go back. The reason I say that, because the spread is aerobic. We can catch the virus through the air, it’s airborne.

Speaker 1
52:06 – 52:28
And ensuring that safety within schools, no one can ensure the spread of a virus anywhere, let alone in schools. Schools are not ready. Teachers are now being placed under enormous strain to try and fulfill what scientists should be doing. or public health specialists should be doing.

Speaker 1
52:28 – 52:58
From my professional scientific point of view, no, we are not ready. There is conflicting information from government and organizations and associations. I would urge parents to think carefully because we have one shot at life and therefore the safety of your children and well-being of the children is of paramount concern. My partner Michaela is a teacher.

Speaker 1
52:59 – 53:22
She knows the pitfalls and the ins and outs, and schools are not equipped to continuously be cleaning and trying to prevent. That in itself is causing mental health and emotional stress. Then I’m a parent and I’m like, do we run the risk? When do we start building immunity?

Speaker 1
53:22 – 53:28
I don’t think now is the time. I honestly think that from September we will have a clearer understanding.

Speaker 2
53:29 – 54:11
And also children with special educational needs and disabilities, like children like my son Angelo, he has no concept whatsoever of social distancing. He likes to touch people, he likes to put his face close to mine or teachers or colleagues that he likes. That’s the difficult part for the staff as well, to try and in a supportive way, to guide Angelo to like, oh, you can’t do that type of thing. So yeah, we also had, I’m not sure if you have had any calls, but I had a call from social services asking about, would I be happy to send my son back to college?

Speaker 2
54:12 – 54:36
And then the college actually had a call from social services trying to conduct a mental capacity test over the phone I don’t know how you can do that and my thoughts are thinking is this a way of trying to cost cut I don’t know, I’m always like thinking there’s always an agenda behind everything that’s social.

Speaker 1
54:37 – 55:00
I certainly do. I’ve had a phone call from my son’s social worker and like your son Angelo, Bastien touches everything, puts everything in his mouth. He’s very tactile, touches things, licks things, holds things, sucks things. He still does that and it’s going to be detrimental to his health and well-being.

Speaker 1
55:00 – 55:22
how are we going to prevent that? You can’t because you can’t monitor him absolutely every single second of every single day. you know, that said, what I feel that there is a cost-cutting plan of action going in. And as we all know, we’ve just come out of austerity.

Speaker 1
55:22 – 55:53
However, I think we will very much go back into an austere frame of mind or political frame of mind because of COVID. And I happen to sit on the Westminster Health and Education Forums and write articles for Westminster, giving them my viewpoint on how things should be conducted. And my articles go out regularly to MPs, and they read them with glee and delight, I think.

Speaker 2
55:53 – 56:12
You get feedback? I do, yes. Oh, that’s good, because I’ve known so many people where they put policies together, where they just sit on a shelf after they’ve spent God knows how much money trying to collect the information so I’m pleased to hear that you know after your hard work and they are reading them and you are getting feedback, that’s great to hear.

Speaker 1
56:13 – 56:43
I think that one of the telltale signs is that when I go live on a Wednesday, the information that is shared is then picked up by several politicians and they follow along, so I’m always very mindful of who’s watching on my sessions, you know, but I do offer feedback to the all parliamentary group for special educational needs and disabilities for Westminster, and so I will most certainly put my point forward in the next coming weeks as well in terms of funding.

Speaker 2
56:43 – 56:48
Okay we’ve got a few minutes left I just wanted to ask you what is your support network who supports you?

Speaker 1
56:50 – 57:47
Well you know I It’s been very difficult for me because primarily it’s just been myself and Mastian for quite a while, but I have a select group of friends who have known me from childhood and they support me either through phone or, you know, contact, visiting. we go out for coffee and we just cry or we go to the park and have a walk and cry or so yeah a group of select friends and I have to also give a mention to my friends in Germany and in South Africa but most importantly to an exceptional, exceptional lady and that is my partner Michaela because she loves and adores my son for who he is and accepts me and me being busy and helping everybody else. And so she is ultimately my rock, really.

Speaker 2
57:47 – 57:59
That sounds wonderful. Just before we go to the end, I just wanted to remind everybody about the Autism Hero Awards. I’m hoping that it’s going to go ahead in November. Hopefully everything will be settled by then.

Speaker 2
58:00 – 58:33
But if you would like to nominate somebody, maybe it’d be a parent, might be a carer, might be someone like Janet, that you feel goes the extra mile for children and adults on the autism spectrum, please check out the charity website. There’s 12 different categories and you can nominate somebody as you feel that goes the extra mile for autism and you can send it in to us by the first week of September. And the event, as I said, takes place in November. Thirty six finalists will be chosen by our judges.

Speaker 2
58:33 – 58:47
Thank God it’s not me because it’s such a tough challenge for them. They always ask for extra time because they find it so difficult. So please send in your nominations. As I said, parent, carer, professional reporter that writes particularly well.

Speaker 2
58:47 – 59:23
teacher, a teaching assistant, a social worker, whoever you feel that’s either supported yourself or supporting others, please write in to us all the information on the charity website. Just to share again that Janet will be writing an article and it will be on our charity website. Just to remind you www.annakennedyonline.com, at Anna Kennedy One on Twitter, Anna Kennedy Online on Facebook and at Anna Kennedy OBE on Instagram. I just want to say thank you so much, Janet, for sharing your life with me on radio.

Speaker 2
59:23 – 59:35
I think you’re amazing and what you’ve achieved. And I hope that your son becomes a really fantastic chef and I’m sure he will be with your support. So thank you again, Janet, for speaking to me today.

Speaker 1
59:36 – 59:49
Oh, it’s my pleasure. And thank you so much for inviting me. And I thank you to your audience as well. know if they want to get in contact with me by all means they can contact me directly or go through you and all my information will be up.

Speaker 2
59:50 – 59:58
Okay thank you very much everyone, keep safe, keep strong and keep fighting and bye and I’ll speak to you again soon.