Case Study 1. May 2019
I have two adopted sons, one age 12 and the other age 7. My oldest son’s early start in life was difficult due to birth mum’s challenging lifestyle and substance and alcohol abuse whilst pregnant. As a result, my son suffered considerable trauma in utero. Possibly due to an unrecognised vulnerability, he then suffered bullying, grooming and abuse at primary school, all of which was without our knowledge for some 3 years. In June 2015, my son broke down and for the past four years has presented with Attachment and Dissociation Disorder, neurological difficulties and the signs and symptoms of PTSD/ACE (adverse childhood experience).
Since the age of 8, he has shown extensive and complex social, emotional and behavioural difficulties. We endure extreme emotional outbursts, often several each day, during which his levels of anger, aggression, violence and abuse are severe. It can take me and my husband up to 2 hours to help regulate him, often involving holding/restraining. We are receiving help and support from relevant professionals, however 4 years on and we are exhausted, a family in crisis, financially affected and suffering secondary trauma. Our youngest son also suffers from the impact of his brothers’ difficulties.
I met Pauline Grant at the North Tyneside Parent Carer Forum AGM and she told me about Smell the Roses. I immediately booked a place and have attended 2 Retreat days so far, with another booked in June. I attend many support groups, as well as receiving EMDR treatment for my secondary trauma and these help me to cope with life I now lead, however it doesn’t help me to get away from it. Attending the Smell the Roses Retreat days allows me to feel “normal”, meet others facing their own challenges, but for the first time in so very long to be pampered, cared for and be put first. As I write this, there are tears streaming down my eyes as I realise just how much Smell the Roses has helped me. This is not merely a support group, although in reality it acts in this way due to the empathy and understanding of Pauline and the amazing volunteers. It’s much more than that! First and foremost, the day is for me to recharge my ever depleting batteries and offload in a safe, relaxing and comfortable environment.
From the moment I first walked in to the Smell the Roses base (which was a huge step in the first instance), I was met by the loveliest people and quickly realised this was genuinely a day just for me to do with as I pleased. I spent the day crying, laughing, creating, relaxing, eating and drinking gorgeous treats and making friends. The effect of the day and the overall pampering kept me going for at least a week. It’s therapy in itself! On that first day, I walked in with a headache and the most intense stress pain across my shoulders, with knots a fisherman would be proud of. By the lunchtime my headache had gone and by the end of the day the knots across my neck and shoulders had unfolded. I walked out feeling on top of the world and ready to face my challenges.
From speaking with Pauline, I know this is just the start with the pamper days. I can’t wait to experience and benefit further from this. I thank my lucky stars for sitting on the same table as Pauline, during the NTPCF, all those months ago. Roll on 6 June. Thank you Pauline and Smell the Roses….
Case Study 2. May 2019
I have been living with disability for just over three years now. My daughter had a brain injury when she a week old, which was caused by a virus. She was severely affected and is living with Cerebral Palsy, Global Developmental Delay, feeding difficulties and epilepsy as a result. I also have a very boisterous and energetic five year old boy. Our family is full of fun but managing the two children with their very different needs can be hugely challenging at times, even with the help of a very supportive husband.
As a special needs mum, you have so much to juggle at any given time: medical appointments, keeping on top of an ever changing medicine regime, and a plethora of therapy activities to take the child to/deliver yourself - as well as all the normal challenges of balancing work and home life. I can often find myself overwhelmed by the relentlessness of the task and feel desperate for rest/time out for myself. Not many people understand the extent of how much you have do each day, which can make me feel isolated at times. Family and friends may want to help, but it is hard finding the time to go through all the training around feeding, medication, handling and so on. In contrast, I have to keep going for Ellie, learning all the time how to best look after/fight for her despite how exhausted I feel. Thankfully some friends from church and some family members have committed to helping us out when they can, which makes a huge difference.
I was excited to hear about Smell the Roses and the chance to meet other special needs mums. I’ve found there are very few opportunities to meet other mums in similar situations to me, particularly those with children with brain injuries. Moreover, the spectrum cerebral palsy is so wide that it’s hard to find someone else with a similar situation to yourself.
I cried within an hour of arriving at the first ReTreat day. I often have to suppress how I’m feeling and keep soldiering on most of the time as our situation is complex and takes time to explain. I found the volunteers really friendly and supportive, as well as the other mums who attended. I would encourage anyone who is concerned about getting overwhelmed and breaking down to come along regardless. It’s so freeing to be honest and know you’re amongst people who truly get it and will cheer you on to keep going.
The ReTreat days are such a lovely chance to take some time for yourself, with a range of activities to suit. I have taken a book and fallen asleep a number of times now. The temptation to stay home and get on with the never ending list of jobs is strong for many of us, but I always come away feeling refreshed and glad that I’ve taken time out for myself. Above all, I’ve really valued chatting to mums and volunteers who just get it. Despite our very different situations, there is a lot of common ground; it’s brilliant to keep spurring each other on and remember that we’re not alone.