9 October 2017

Marvellous Monday - An Interview With Kate* & Little Miss E - PDA

Welcome to my new series - Marvellous Monday's. I will be interviewing people who have a direct connection to someone who is autistic, or is autistic themselves. I am excited to showcase some positive experiences of carers and parents. There are many difficulties and challenges that we face when someone in the family is autistic, and those little achievements of success are often overlooked because of the extensive caring duties and severe anxiety that some families face. My aim is to  publish as many interviews as i can, each week on a Monday morning so that after the busy weekend of caring and the daunting week looming ahead has a positive beginning. Something for you to read, whilst you take you first breather and have your first hot cup of tea or coffer in days. I want to share the happiness and joyful moments of many families, children and adults  with the hope that it can help you as a family hold onto that thought that 'It can only get better'
Good Morning, thank you so much for taking the time to take part in my regular Monday Morning series, hopefully we can help everyone start the week with some positivity and an uplift. We all know how challenging and exhausting the mornings are especially if the children are suffering with back to school anxiety.

I for one, would like something joyful to read, as we struggle on a regular basis here. If you have followed our journey, you will know that Lola really doesn’t cope well in the mornings and Connie –Mai is finding it increasingly difficult to become accustomed to leaving me at the school gates. 

What a great way to start the week, by sharing all those positives, some tips for the difficult times and telling us a bit about your family and those massive milestones you’ve reached that you didn’t think possible?

So can you tell me a little about yourself and you family and the connection that you have to Autism?

We have one amazing daughter who is 6yrs old. We took her for a private assessment early this year and she was diagnosed as we believed she would be, with ASD (Autistic Spectrum Disorder) with a PDA (Pathological Demand Avoidance) profile.

She shows many classic 'Aspie' Girl traits and also a very high level of demand avoidance as you'd expect with PDA.

We are lucky to have a very supportive family. I have family members who are Autistic but we didn't know anything about PDA until researching Autistic traits combined with a passion for role-play, and PDA showed up.

Its so different isn't it? I had the "Light-bulb Moment" commonly described by parents of children who fit the PDA profile.

So,  tell me a little about how you manage this positively?

Our daughter has helped us look at everything through a different lens. We live differently totally on purpose and take things very slowly to make life as inclusive for her as possible.

Dealing with demand avoidance daily benefits from extreme flexibility, acceptance, and patience from everyone. When Miss E gets overwhelmed she needs time to rest and reset - a lot of time sometimes! We follow her lead as she is an only child which is a very different dynamic to managing with siblings and their needs.

We know she is always doing her best and if things are challenging for her at times we just hope we can help her stay full of confidence in who she is which is awesome, funny, self assured, tuned in to her needs, focused, interested, full of beautiful smiles and cuddles, and so much more!

It’s definitely exhausting having to remember all of these strategies and positive communication to keep anxiety and those shutdowns at bay. You sound like you really have it worked out, like you say though, its a very different dynamic when you have multiple children and one is trying to cope with having such extreme demand avoidance. But equally its still very very challenging. 

We are really mindful of her triggers including sensory stimulus, demand avoidance plus social & communication challenges and support her the best we can in making her environment and life circumstances the best we know how.

I believe the best thing I can do often is take care of me and deal with the things that trigger me so I can can hold a calm space for Miss E when she needs it.

What are your three top tips for someone struggling to deal with the morning routine and keeping everyone happy? – I for sure could do with some extra ‘Go to’s’ up my sleeve for the mornings.

We don't really have a morning routine as we home educate and always have chosen that. Our beautiful girl wakes around the same time each day but according to her natural rhythms. She isn't often very hungry and usually wants to play a while before she's ready to eat.  I'm always starving, so I prepare something the night before ready for me to grab when I get up. She chooses her own clothes and gets dressed when she wakes up out of choice. We brush her teeth anytime during the morning and sometimes in the afternoon when she feels able. We have very few demands.
That just sounds absolutely perfect for a child diagnosed with PDA, I really think Lola would benefit from much the same. She is so much more relaxed at the weekend when she wakes up.
So its Monday morning and hopefully the readers have grabbed a cuppa, or a coffee if that’s your thing, and are chilling out for a while, de-stressing, re-grouping and reading this wonderful interview about family life with Little Miss E and as shes one of our anonymous interviewees - Here is her mascot!

Little Miss E is clearly really benefiting from your awesome parenting techniques, tell us those bits about E that make your heart smile, or your stomach flip with joy? The things that on a “normal” level are overlooked into everyday life, but for families like yours and mine are amazing achievements?

I love seeing how much her self awareness grows each year.  

What do you find most Joyful about E?

  • Hearing her sing and seeing her dance makes me grin from ear to ear every time. 
  • She puts her arm around my shoulders and cuddles me.  
  • she chats away with such ease and confidence to people in shops and other venues.

What an amazing little family that you have, I feel so honored that you are sharing all of this with my readers and I.

Its really important for carers of autistic children to take some time to re charge batteries, and look after themselves, the reality of this makes it quite difficult though so can you share some tips of when and how you recuperate?

I'm a holistic practitioner so I use relaxation tools like EFT, Reiki, and meditation for myself everyday & I love a good soak in a bath with Epsom Salts!

I get so much from connecting with other parents walking a similar path through the amazing Facebook groups run with so much love out there. We feel so lucky to be raising our daughter at a time where there is so much information and support for parents on PDA and such an astounding PDA online community building all the time.

Similarly its important for the child to be able to take some time and reflect, process their day and relieve all of their pent up anxiety and sensory overloads, so does E have any successful techniques or aids that they use that you can share? Lola Loves to colour so when she is struggling we always offer her books and pens as a first distraction.

Because Miss E is at home she chooses what she wants to do when. She has a favourite sofa and a blanket she loves to get cosy in for a rest.
She loves using the iPad when she wants to just chill out. If we are out and about she will use ear defenders and her buggy to escape the sensory overwhelm.

I find that its so important to share these ideas with other parents because although most of us are aware of them, some of them can be forgotten, and just that little reminder can change a period of negativity to one of positive outcomes for both parent and child, so thanks so much for sharing you wealth of knowledge with us, I am sure that many parents are going to really benefit from it.

Finally we all want to know about the biggest milestone that you or E has accomplished in recent months.

We just love see her growing in self awareness all the time!

And on that note, I hope you have a Marvellous week and that this interview has helped benefit you and family, with techniques and ideas, or even just given your Monday morning a bit of a cheery start.

Thank you to Kate* for answering my questions and thank you to those of you who have taken the time to read and share this to help many families start that all important week off in high spirits.

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