I have to say, I know I’m really lucky, I have some amazing friends. I’m not one for having hundreds of ‘best friends’ because, apart from anything, i just don’t have the time. So, I spend time with those I love and we laugh together and support each other no matter what our situations and make the time count. I have, however, made some fantastic friends online. Other parents who are walking in my shoes. This isn’t something I could have imagined before having Freddie and being thrown into the world of special needs and disability but now I really don’t know what I would do without them! Many of my online friends, I have now met in person and those friendships are growing. I am grateful we live in an online era. Walking this path would be very lonely and isolating without the communities I am a part of, the support and understanding I have found and the friendships I have formed.
Thank you to everyone who is part of this community. I really want to grow it and reach as many parents as possible and build our support network. If you feel this way too, please share this page far and wide. x
There is something about that term that really hits home with me. I came across it some time ago but one of my fellow SWAN UK parents shared an article on it again not so long ago. It’s been sitting in my thoughts for a while and then bam it hit me like a sledge hammer yesterday.
I was having an exciting and very purposeful coaching session in the morning and came away feeling fantastic and ready to crack on with more work towards my goal. As I was walking through town to the bank there was an elderly gentleman who’s mobility scooter had failed and he was stranded. Everybody just walked past even though he almost rolled into the road. Anyway, it turned out fine, with the help of two lovely men from a nearby shop we moved him to safety and security were going to help him get home. Positive outcome.
Chronic Sorrow, you’re wondering where is the sorrow in this story? Well, on my way back to the car, I passed a small group of people in a bit of a commotion and I realised the group comprised of young adults with special needs and their carers. One of the girls was very distressed and everyone was looking confused and worried and passers by were staring.
There it was, smack right in the face, is this the future for my son?
A massive part of my vision for this this community we are building here is not just empowering us as parents and sharing ways of coping and being powerful but to have possibilities in place for our children to have a purpose in life. I’m not saying that the group of young adults I saw had no purpose in their lives but I hope for my son to have employment, friends, respect and a reason for getting up in the morning. To live happily in the community as my other children will. I see our children as children at school and in similar settings, mine are still young, but I don’t see them as adults out in the community very often and this creates a sadness and a worry for me.
Having a child with special needs and disabilities is amazing and rewarding but can often come with that Chronic Sorrow that really makes your heart break because you love them so much. Wishing life could be easier for them and for us as parents and their siblings. You put on the brave face and the warrior parent is active so family and friends and even you don’t always recognise it. Over time, acceptance falls and all of your love and determination kick in but it doesn’t take away that Chronic Sorrow.
That feeling may never go but there is a lot we can do to support each other, educate the world and put actions in place to help provide our children and adults with their own individual purpose.
As Tony Robbins would say, it about taking ‘massive action’ towards the goal. Now that I’ve picked myself up again that’s what I’m doing, taking ‘massive action’.
Susan Ellison Busch talks about Chronic Sorrow in her book, Yearning For Normal.
Photograph courtesy of Ali Ineson xx
SWAN UK Blogger
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Hi, my name is Aimee, thanks for visiting my mentoring blog. What’s all this mentoring business about I hear you ask? Well, I’ve got three beautiful children and my first born, Freddie, has special needs. He was born with an undiagnosed genetic condition which presented itself as global developmental delay. This meant we didn’t and still don’t have a prognosis for his future, or ours. Even though earlier this year we received a diagnosis of TUBA 1A, it is so rare, with hardly any information held about it that I still think of Freddie as a Swan.
My hubby and I are fortunate to have fabulous family and friends but we were well and truly lost. I struggled for a long time to find any personalised, individual support for us as parents. After a few years I found SWAN UK, an amazing charity with an incredible support network for parents and their children with undiagnosed genetic conditions. This has been a life line for me as we navigate our way through the unknown so much so that I became part of the SWAN UK voluntary team of Parent Representatives.
The thing that has always been missing for me though is guidance from someone who has walked in shoes similar to mine. I craved to know how best to handle my emotions, how to handle social situations and how to achieve the best outcomes for Freddie and for us. Over time, I’ve learnt a lot from some amazing family, friends, mentors, NLP and relaxation techniques. So, feeling determined to help other families loving and caring for their children with special needs and disabilities, I decided to set up Aimee Mann Mentoring. I want this blog, my Facebook page, private group and the future projects to be somewhere I can share our story and provide useful information and strategies to build a connection and a community of strength. A community of knowledge, support and empowerment.