Tuesday, 8 November 2016

This Is Our PDA Story (Week 17)

Stephs Two Girls November 08, 2016 ASD, autism, our PDA story, Pathological Demand Avoidance, PDA, This is our PDA story

Last year, I ran a series called 'This Is Our PDA Story' for 16 weeks here on my blog. The idea behind it was to give a variety of families who are living with Pathological Demand Avoidance a voice to share their stories - to explain how PDA affects them on a daily basis, or to show what kind of different lives we all lead.

Every child is unique and so it's unlikely that any two children with PDA will be the same, but there are similarities in all the stories.

I've been wanting to reintroduce this series for a while, and I'm delighted to bring back Tracey. Tracey wrote the earlier part of her story for me back in 2015; you can read that at Week 5. Here's her story of how they manage living with PDA now....

-----------------------------

Almost 2 years ago I made the decision to home educate my daughter Chloe, She had been failed miserably by the school system in our area and constant promises had been broken, even with a diagnosis from a young age (5 years old) No additional help was offered, no one to one, no visual help apart from how to take her coat off in the cloak room. I was appalled about how little care was given to my child's needs and how I was loosing my bubbly, energetic and sweet child. Friendships were strained, night times were sleepless and I felt a prisoner in my own home as the demand on leaving was far to great. Something had to change and my mum battle strength had slipped away. I felt lost and lonely and no-one to turn too, can you imagine what my 7 year old was feeling?

After making the decision we took some time to get Chloe calmer and happier at home, we were lucky in the fact that we knew a few home educating families one being a close friend of ours which made our decision a little easier. We were introduced to more friendships and fully embraced our new lifestyle change. As not only Chloe's education changed so did our lives, I went from working and running a creative business to being a full time carer and educator and also writing a creative blog, feeling less stressed as the hum drum of everyday living and the demands to be places at certain times had gone. In a way I felt elated, as if a weight had been lifted.

We started with project based learning and MEP maths (she loves maths, a gene that she doesn't inherit from me by the way). We delved into dinosaurs and Egyptology, deciphering hieroglyphics and science experiments at home, I was enjoying learning! let alone Chloe. We managed to go places, at the beginning it was hard as it took her time to settle and a long time to be able to go out and about, now we are able to visit lots of new places and enjoy it with very little anxiety.

Chloe's confidence is outstanding, you would not think she was the same child, I know I have made the right choice and there is no returning to the system anytime soon. We still have occasional anxiety moments or when she doesn't want to do something or go somewhere but the amazing thing about how we live our life is that she doesn't have to!

I have also found she is more affectionate with us and her friends, able to discuss and put her feelings across in a manner we can all understand, she has this way with people that makes them want to chat to her, she's so engaging and switched on. She will confidently talk to adults and shop keepers etc as before you would get just a noise or she would ignore them, so much has changed in 2 years.

It's not easy it can be very tiring, especially collecting educational materials, it's quite costly, so I'm always researching and finding out about what we can learn next. Chloe sleeps better but still settles late at night and still wakes throughout the night, we have found out this is due to her hyper mobility and hopefully we can get some relief for her now we know what we are dealing with. Because of her erratic sleep patterns home education suits us more as if we had a bad night then there is no rush to do anything in the morning and we can take our time.

It may not suit everyone but it certainly has made ours and most importantly Chloe's life better - day by day she improves and if we do have a bad day we learn from it and adapt.

--------------------------

Tracey's daughter Chloe has her own YouTube channel at chloemejustme, Facebook page at www.facebook.com/chloemejustme and Instagram at www.instagram.com/chloemejustme where she shares some great insights. Go follow her!

For more information about PDA, please visit the PDA Society website at www.pdasociety.org.uk, or The PDA Resource.

If you click on the links below they will take you back to previous weeks of 'This is Our PDA story' where you can get a flavour for what PDA life is like.

Week 16
Week 15
Week 14
Week 13
Week 12
Week 11
Week 10
Week 9
Week 8
Week 7
Week 6
Week 5
Week 4
Week 3
Week 2
Week 1

To find out more about our experiences, please check out our 'About Us' page. If you are looking or more information on Pathological Demand Avoidance, why not try some of these, my most popular posts?