Community Support & PDA awareness

pathological demand avoidance - the importance of support for parents

What an amazing week this has been for us. It was PDA Awareness Day which I supported with a coffee, cake and chat day along with raising awareness via my blog and social media.

There was a definite increase in PDA related posts and tweets online during the week, and I have had many conversations explaining what PDA is (and what it isn't). I am so excited to see this happening as it means that awareness is growing - I do hope that soon we will see PDA being recognised in the diagnostic criteria

On a more personal level, this week was all about community and connecting with the support communities around me.

It is so easy to feel isolated and alone as an autism parent, especially when facing challenges that push you past your limits. There have been many times in the past year that we retreated into our own world whilst trying to weather the storm around us, but this week was different.

I was supported by three communities of support around me, each of whom supported me in different ways.  It reminded me of how important these communities are to helping each other and sharing in the good times (and the bad).

With so much to learn, so many challenges to overcome and numerous wins to celebrate, it is these communities that keep us going.

Local Parent Support Groups

This week I had the opportunity to meet up with other parents from two of our local parent support Groups. On Monday, it was drinks with G.R.A.S.P.S parents and on Thursday it was dinner with South Bucks PDA parents.

I try to attend at least one meet up a month with other parents, and always come away from these meet ups with something.

This week we spoke about trying to get EHCP needs assessments, understanding Sensory Processing needs, and I learnt of a mainstream school in Maidenhead who is doing everything they can to help one of the other parent's little boys in class which was really great to hear. We also spoke about PDA, the support that is available and the importance of the right support strategies. Such a great way to learn from others, and connect with local families.

There is nothing like talking face-to-face with other people who understand what you are going through, and can share their insights from what they have discovered from their own journeys. These local connections have made us feel less alone, and we now have people we can turn to if we have questions that we can't answer.

You can find your local support groups via the National Autistic Society, Contact a Family and PDA Society.

SEND Bloggers Facebook Group and the Social Media community

A while back I was invited by Steph of Stephs two girls to join a FB group for SEND bloggers.

Through this group I have discovered a group of amazing bloggers, most of who are listed on Bringing us together: Send-parent-bloggers. They are all passionate about their families, supporting other people and raising awareness of various aspects of special needs including Autism, PDA, Ehlers Danlos syndrome and Undiagnosed Genetic conditions.

From this group I have been inspired, and have learnt so much from the way in which they inform and help the people around them. On Tuesday I asked the group to help spread the word about my post on PDA Awareness Day, which they did via their blogs, FB pages and twitter. The support and response was more than I could have hoped for - my recent PDA posts have had almost 3000 views. This was a massive milestone for me, and something that I didn't dream of when I first started my blog.

With my FB page and my new twitter account getting new followers each day, I have seen how social media can bring people together and help other people to find the answers they have been looking for with little success. There is something quite special about seeing people make connections, and find a way forward

I still have much to learn, and I am looking forward to see where it will take me next.

In the past few days this community has come together to help promote PDA Awareness Day. The posts and tweets have been flowing, and I have eagerly been reading what other people have been sharing. There are so many inspiring stories and great advice from other parents out there. Check out the blog hop below to read some of these great posts. 

Finding this community has helped me find my voice on something that is close to my heart, and has allowed me to connect with other people as part of trying to do something that can make a difference.

Our Local Community, Friends and Family

cakes and coffee for #PDAAwarenessDayWe are really lucky to live amongst a great group of people, who came out in force to join us on Saturday for our coffee, cake & chat day.

Even more amazing was the other families from our local PDA parent support group who were able to join us.

With over 30 people dropping in throughout the day, many armed with cakes to add to the table, we raised plenty of money for the PDA Society. We also had plenty left over, so I will be heading into work armed with goodies to share the love (and hopefully raise even more money).

Looking at our house filled with happy people, all coming together to support a cause which is so close to our heart really made me realise how lucky we are.

If existed, my street would get a 5 star rating! As would our family and friends who have supported us every step along the way.

These are the people who have been there with cups of coffee/ wine as I have sobbed in the bad times, and helped to celebrate the good times with wine / fizz.

They have listened, asked questions, helped us out in tough moments, challenged me to be positive when all I could focus on what the negative, encouraged us, been incensed at our injustices - and most importantly they have been there.

This week I celebrate #PDAwarenessDay AND #GreatCommunitySupport . Holding Hands Together, we can make a difference on a personal and a global level.

Did you support #PDAawarenessDay? Do you have a great community that keep you going? Let us know in the comments ....

To add the PDA link up to your blog, include this code in your blog post.

Sons, Sand & Sauvignon

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