Last week was a first for me. My friend and Mentor, Clay Lowe, invited me to take part in a Podcast with him. We talked about Aimee Mann Mentoring, the first in a series of events that I am facilitating, hosted by Entrust Care Partnership and what it means to be Undiagnosed and the support I have received from SWAN UK. It was a great experience and I hope to do another one again in the future. If you have a few minutes to listen, maybe whilst doing your ironing or you can log on to Radio Warwickshire and listen to it in the Car, please do have a listen to learn a little more.
This morning was a mad dash, more so than usual. I had been invited, in my other capacity as Volunteer Parent Representative for SWAN UK to meet with 20 Paediatricians, consultant and trainee level, at our local hospital. It was infact the hospital where all three of our children were born and where we spent our time in SCBU with Freddie.
I was there to tell them about Freddie’s story and the importance of having a sense of belonging to a community who understand you, having access to good quality information and knowing that the professionals who are supporting you have somewhere to signpost you rather than telling you to go home and to wait and see what happens. This elusive support network and raft of good quality information is often very hard to come by when your child has no diagnosis to explain their problems. SWAN UK, however, was my saviour.
I always hated public speaking and I used to be a lovely shade of beetroot even when presenting in the corporate world but as time has gone on I have learnt to love it. My worst moment ever was appearing live on one of the shopping channels, I was terrible. Ah how I laugh when I think back now. I could have taken part in The Mannequin Challenge and most likely won it.
When I first started public speaking for SWAN UK, I realised very quickly that I knew my topic inside out and that gave me the confidence to speak.
When I first arrived today and looked through the window I thought I must have looked like one of those cartoon characters who’s heart is pounding out of their chest.
That feeling really only lasted about five minutes though. Once I started to tell them all about Freddie and our experience it all just started to flow. The reaction was such a positive one and I loved it.
SWAN UK made such a impact on me in my state of limbo and distress that I took on the parent rep role and this is one of the things, along with my other supporters such as Entrust Care Partnership, my coach, my lovely friends and family and of course Ollie which have given me the confidence to set up Aimee Mann Mentoring to really support and guide parents of children with special needs and disabilities with or without a diagnosis.
January 3rd brings with it a holiday day, The Festival of Sleep.
A very sleepy tiny Freddie getting in some Zzzz (2012)
I can hear the sounds of sarcastic laughter ringing in my ears. With so many of us running on empty and trying to managing our sleep debt, the thought of a whole day dedicated to sleep and rest seems very far fetched. Although its origins are a little hazy, The Festival of Sleep is like an official duvet day. Ah I remember these days fondly, days before children, working in the city or my university years. Whole days spent in my PJs, drinking tea and watching terrible TV. Finally getting showered and dressed just in time to make it to the shops to buy food for dinner. Brilliant.
So, although the majority of us won’t be able to achieve a whole day of rest, do try to take 10 minutes, half an hour, a 20 minute walk to just be and rest. Don’t look at the ever expanding To Do list, don’t put another load of washing in and don’t do any paperwork. Just be. If you can get time to do a favourite activity or have a nap then grab the opportunity with both hands. Light the candles, read a book (or at least a whole chapter, I’m still trying to finnish the latest Jilly Cooper) have a bath or play some music you like. Here are some of my all time favourite things: The Little Book of Mindfulness, some beautiful candles, aromatherapy and some lovely bath salts or bubbles by Neals Yard.
Be kind to yourself.
My wonderful Mum-in-Law had all three of our sprogs to stay the night so that we could go out for New Years Eve. My poor hubby had to leave for work at 8am this morning so I found myself alone. Even the dog had a sleep over. Although feeling very guilty knowing I could be ticking many items off the huge To Do list I have created, I took my Mum-in-Laws advice and took some time for me. I have had a very cheesy 1980/90s morning watching Cocktail and Pretty Woman whilst drinking HOT cups of tea. I’m not totally sure when this opportunity will come my way again so I decided all the jobs could wait and I would pretend I was 22 again and chill out for a bit. I could have gone back to sleep which would perhaps have been the most sensible but I’ve loved my cheesy one off morning. With that said, I better clean up the house a bit and go collect my children.
Happy New Year Everyone. I hope it is a positive and kind year with lots of opportunities for wonderful memory making with your children and the odd time of rest.
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For what seems like forever, we have lived in limbo.
Freddie is my first child and during my pregnancy, which should have been exciting and restful, we found out at my 20 week scan that his brain wasn’t developing typically. To say we were devastated is an understatement. This marked the first day of limbo and uncertainty. We had a foetal scan every other week at the city hospital, Microarray, amniocentesis, bloods and goodness knows what else. Everything came back negative but each week the scans showed more and more problems for our sweet baby. The doctors said at this stage they could only really tell us what it wasn’t and not what it was. We didn’t know you could have a disability without a name, something undiagnosed. But then, why would we?
We met with a Paediatric Neurologist who answered as many of our questions as he could but again he didn’t really have any answers, just that our baby would potentially have developmental difficulties of a mild to moderate nature. Although heartbroken and frightened, we decided to take the word ‘mild’ and run with it because the alternative was too awful. The consultants had on occasion offered us a termination but what shocked us most was that they could offer it, by panel, up to 39 weeks gestation.
Freddie was born at 35 weeks and he was so small. In fact, last week whilst my husband was clearing out some of the children’s old clothes he came across a tiny hand knitted cardigan which had been given to us by SCBU where we spent a week after his birth. All the tiny clothes we had bought were still too big. On this particular morning, I was feeling really happy and rushing to get the children out of the door but this totally floored me and floods of tears ensued. All the memories of those early days and all my feelings of love and pride for how far he has come but how painful the process has been and the courage we have had to find was all wrapped up in this tiny cardigan. (Really must invest in some waterproof mascara). Once I’d sorted myself out, I took a minute and tried to focus on the positives of his progress and the progress of our family unit. I’m acutely aware it could have so easily broken down but so far so good. We have worked hard on our marriage and our family and we do of course have three children now which is wonderful.
The one thing that never went away though, was the feeling of blame which I have carried around with me for a long time. Was it the the bottle of Prosecco I drank the night before I realised I was pregnant? Was it the massage I had or the products I used or was it the flu jab I naively had in early pregnancy, without really knowing the implications? It’s been difficult not to dwell on it. We did receive a diagnosis from the DDD study https://www.ddduk.org earlier this year which has taken some of the pressure off but so far, Freddie is one of only 5 known in the UK with the same gene variant. So you could say we are still Undiagnosed to a degree, as the European Union states that a rare disease is defined by one that affects less than 5 in 10,000 of the general population. Other than having the cause of his difficulties and knowing it is De Novo in him and not hereditary, we don’t have much else and no prognosis. Even with the diagnosis, I still wonder if Epigenetics was at play? Im quite sure no medical professional is ever going to discuss this with me seriously but you can’t help having a gut feeling about something. Parenthood is filled with opportunities to feel guilt so for all you parents out there walking a similar path, I hear you. I am now in a place where I practice focussing on the here and now and the future and not the whys and hows because I know nothing will change by knowing. Its the only way forward to having peace. I do occasionally revisit Dr Google and the Epigenitics question that hangs over me but mostly it is now a story running in the background of my mind. If you can get to the point where it is quiet dialogue whispering in the background and not shouting at you, then you can claim some peace and let go of the guilt which shouldn’t really be there.
You can also find me on FaceBook. https://www.facebook.com/Aimeemannspecialneedsmentoring
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, your 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 is 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
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.