Month: December 2016

Being Undiagnosed. Was it my fault?

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 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.

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How to be a Velvet Bulldozer

How to be a Velvet Bulldozer, is a term that has stuck ever since it was mentioned to me a few years ago by a friend of mine.
I was at the start of a very long period of time trying to get our local audiology department to take me seriously. My son clearly had hearing issues, he failed his new born hearing screening three times whilst we spent time in SCBU. They tried to get a reading for twenty minutes and now that I’ve had two more children, I realise the positive result of the test is measured in seconds. Had I known this then, I would have been on the case sooner. Even with these results and multiple other incomplete tests at around nine to ten months old, local audiology wouldn’t and in some ways couldn’t help us to help him. I really believe they were not experienced enough in working with children with special needs. I can recall very clearly, asking the lead audiologist why on earth they thought I would want him to have hearing aids if he didn’t need them? The whole thing was firing up my anger, sadness and irritation.
Anyway, as time went on, with more and more hearing tests, more appointments locally and in Birmingham all to no avail, with the direction of my very knowledgeable friend, we eventually took him to see a fabulous private audiologist who confirmed our suspicions and very wonderfully gave him some hearing aids on loan. It was a massive relief, not of course that his hearing was impaired but that someone was taking us seriously and agreed with our gut feeling and observations at home. This, alongside some specific speech and language therapy and developmental therapy helped him to switch his hearing on and it stopped the vacant moments he had been having since birth. We were also then on our way to the amazing Great Ormond Street Hospital where the lead audiologist also confirmed our fears but helped us to champion his needs.
All of this plus many many hours of therapy at home set us on the path to recovering his hearing to within normal limits. He no longer wears hearing aids and his speech (this is another subject entirely) is coming along great.
As we fought this particular battle, amongst others, I tried to keep in mind being that ‘Velvet Bulldozer’. Getting what we needed but in the best way possible. Keeping the professionals on our side, getting as much information and understanding as possible and preparing well for each and every meeting.
When you really need something for your child or for yourself remember that term and see yourself knocking down all the walls to get to your prize in the smoothest way possible.
It wasn’t until very recently that I actually read the book from which this term is taken and I wish I had done so much earlier. It’s a great read, you can dip in and out of it and the reviews are extremely positive.

Busy Just Surviving

I’ve come to realise, we are more often than not, busy just surviving.

Each day we can decide to live it with purpose, focussing on our personal mission. We will all have days when we struggle with this, I know I do when I’m exhausted, sad or challenged but having focus is key.

To the Virtual Friends I Have Made

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


Chronic Sorrow

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