Manchester, UK – ASK-PERGERS? Is a mother and son team who have co-authored two books, run a Facebook and twitter site and who also provide an online advice service to both individuals and families who live with autism and Asperger’s syndrome. Paddy- Joe, one half of the ASK-PERGERS? team is Autism Daily Newscast’ s Voice on the Spectrum writer. Paddy Joe has Asperger’s Syndrome.
We first interviewed Jane, 48 and Paddy-Joe 19, back in February 2014.
In an interview with disability rights campaigner, writer, blogger and mother to an adult daughter with disabilities, Michelle Daily, for her ever growing Warrior Mums blog series, Jane agreed to be interviewed and told of how she became where she is today. Michelle’s interview with Jane can be read here.
After having read the article I got in touch with Jane for a catch up and asked her a few more questions including life with Paddy-Joe and her own recent diagnosis of autism.
You describe a traumatic delivery with Paddy-Joe which left you disabled; can you tell me the impact of this today?
The impact of Paddy-Joe`s birth left me with a severely damaged perineum, for which I had reconstructive surgery, but I still experience significant pain in this area constantly. I was left doubly-incontinent, and had to wear adult-sized nappies for four years. I have had a lot of surgery in these areas, and continue to need further surgery. I am in pain all of the time, and my mobility is restricted if I am not in close proximity to a toilet – for example, I can do a work-out at the gym because I can stop and use the toilet whenever I need to, but I struggle to wait for a bus, or walk in to my local town centre. This very personal damage, and pain, has had a devastating effect on my confidence, and self-esteem and significantly restricted my life in every way. I have never disclosed personal information about myself on social media before, and the hardest thing for me, when taking part in Warrior Mums, was posting photographs of myself – I have always hated the way I look, and the devastation caused to my body after my son`s birth has intensified this feeling.
You describe extremely difficult years with Paddy-Joe, telling of his outbursts and sleepless nights. Now that you can look back on this time, what advice would you give to parents going through similar circumstances?
If you can get some practical and emotional support for yourself then do so. Remember that meltdowns are a reaction to sensory and emotional overload – not your child having a temper tantrum – the child cannot control their meltdowns, but there are things that you can do to help, such as not reacting in a negative way, keeping calm yourself, and not telling the child off or punishing them for `bad behaviour` – not easy I know, but it makes a world of difference. Regarding the sleepless nights, one of the most important things we did was to implement a bed-time routine, and a sleep-plan. This took months to implement fully, but we have never looked back! Details of supporting meltdowns, and our bed-time plan can be found in our Reward Plan book.
Can you tell me a little about the diagnosis process, as you had to battle to gain one?
I thought that Paddy-Joe either had autism or Tourette`s Syndrome, as he had lots of tics at the time. After referral from our G.P. to Child and Adolescent Mental Health Service (CAMHS) we waited a long time for an appointment. I was constantly phoning and writing to them, worried they`d forgotten about him! When the appointment finally came they said he was going back to the bottom of the list as I hadn’t bothered to confirm we would be attending the appointment! In fact I had both phoned and written. I told them I was coming to camp out in their offices and I wasn’t moving until my son had his rightful place on the list – I didn’t want them to put him before other children, just give us the appointment they`d promised. I pointed out to them that even if I hadn’t of confirmed the appointment that would not have been Paddy-Joe`s fault, and why should he be made to pay the price for this? They relented, and from then on we did receive extremely good support from Paddy-Joe`s psychologist and Speech and Language Therapist (SALT).
To find out more about the books written Jane and Paddy Joe, and to purchase them, please visit the Jessica Kingsley Publishers website here Alternatively you can find them on KINDLE where they are approximately half price at the moment:
For advice & information on Autism & Asperger’s Syndrome check out their free on-line service ASK-PERGERS?
Michelle Daly’s Warrior Mum blog can be found here
Part 2 of our interview with Jane continues here.
And don’t forget to read our popular articles by Paddy-Joe here on Autism Daily Newscast