Dr Kat Ellis-Research on autism, fragile x syndrome and Cornelia de Lange syndrome, Dr Kat Ellis talks about why research is really important and how it raises awareness. Dr Kat gives great information about where to look for support if your child has a genetic syndrome and how sometimes it can take a while to get the right diagnosis. If you would like to know more or get yourself and your child involved in the research that’s taking place, you can email Dr Katherine Ellis on: fragile x syndrome Dr Kat Ellis-Research on autism, fragile x syndrome and Cornelia de Lange syndrome, Dr Kat Ellis talks about why research is really important and how it raises awareness. Dr Kat gives great information about where to look for support if your child has a genetic syndrome and how sometimes it can take a while to get the right diagnosis.

If you would like to know more or get yourself and your child involved in the research that’s taking place, you can email Dr Katherine Ellis on: [email protected]

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Louisa – 3 boys, all on the autism spectrum. Louisa had a late diagnosis of Asperger’s. Louisa talks about how the diagnosis procedure has changed over the years, her oldest being 22, and even though they are all on the autism spectrum that they are all very different from each other. Louisa also talks about her own diagnosis and masking as teenager. Louisa also works with vulnerable people with a wide range of mental health challenges, as well as people with autism and learning disabilities.

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Precious talks about being accused of having Munchausen by Proxy, whilst in the process of tribunal concerning her child’s provision not being met by the school. Precious gives good advice in what to do if you are wrongly accused of this, Precious believes this label is being given to many parents who have children on the autism spectrum.

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Ben-yoga teacher at MahaDevi Roberta Suma Yoga Centre where he teaches children and young adults with additional needs yoga. Ben talks about the Sonia Suma method, which is yoga for the special child training. Ben talks about how he began working with people with additional needs and how he’s noticed that not many men are teaching yoga and generally are absent in the caring professions. He believes more positive male role models would be beneficial to children and young adults with additional needs.

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Amanda-parent to Georgie who is 16 years old, has autism and ADHD, mostly non verbal, Georgie has no sense of danger & has gone missing before and Louis who is 17 who also has autism, Louis use repetitive language and suffers with anxiety. Amanda talks about finding love again and feeling lucky that not only does her partner understand our Special world due to working with people with additional needs in America but has been her and her children’s super hero. Amanda is a yoga teacher and an aromatherapist and also supports young adults with additional needs with her therapies as well as herself and her own children with this way of life.

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Davut discusses the change from a Statement to an Educational Health

Care Plan. Davut explains the law, the time scale, process and

completion of an EHCP. Davut explains each section of the EHCP and how

to complete it to get the best outcome for your child, and where to get

support with this.

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Anthea – single mother with 4 children, all with additional needs. Anthea is also going through the process of getting an autism and ADHD assessment.

Anthea talks about the different experiences she has had with all of her individual children. The challenges of autism, ADHD and epilepsy, how she has always felt different, but didn’t understand why; and to attempting better understand herself through finding out and exploring her own diagnosis.

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Lucy – parent to Emma 24 year old with global developmental delay, Polly 21 years old has autism, pervasive anxiety with challenging behaviour and William who is 15 years old and neurotypical.

Lucy talks about how her daughter Emma has the right support and how she gives a lot back to the community. Lucy also talks about her other daughter Polly who had a breakdown and was sectioned for 8 months, Lucy feels that a proper support package was not put in place for Polly and this made matters worse. Female support staff were withdrawn from Polly, due to her unpredictable and anti-social behaviour. Now Polly doesn’t get any support with her cleaning and self care.

Lucy works as a Teaching Assistant, working one to one challenging children. She is licensed preacher in her local church; they have always been very supportive. Lucy was behind the Regatta on the Thames for the disabled.

Listen to Lucy’s daughter, Polly talk about her experience of autism, anxiety, challenging behaviour, how she feels afterwards and how she’s learning to regulate with medication. https://thegoodthebadandtheugly.co.uk/polly-daughter-to-lucy-polly-talks-about-her-violent-outbursts

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Polly talks about living in supported living and about the things that make her more anxious and how this can lead to her violent behaviour, Polly also talks about how she feels afterwards and how she’s learning to regulate with medication. Polly talks about having an advocate that can be her voice and how she finds this helpful.

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Colleen talks about feeling let down by professionals. and having no trust in the system. Having to constantly fight for Sami’s needs to be met, the affect this stress has had upon her husband and herself. Colleen talks about the pitfalls of residential and assisted living and feels that the system does not make it easy for parents, like herself. Colleen would like to have Sami in residential living accommodation half of the week and to have Sami at home with the family the rest of the week. If Colleen was able to do this there are then consequences that are not realistic and they would have an affect upon the whole family.

Be aware that this podcast is quite harrowing at times and names of people and names of residential homes are silenced for legal reasons.

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