Feelings about parenting a child with special needs
Having my children has brought me to a very different career path. I started out working in accounts, then family support work and after many years talking to teachers, doctors and setting up Statements of Educational Needs with our local authority for both my Fragile X children and dealing with voluntary and statutory sector agencies and support groups, I found I had a wealth of knowledge.
More importantly I discovered if my family ever needed counselling and a deep understanding of their needs and feelings who would be out there to offer this? I did the counselling training and 3 and a half years later in 2007 embarked on the best job in the world – helping other families!
A parent’s reaction to their child’s developmental or learning disability varies between individuals. I remember feeling very early on ‘why me, why my child?’ and then seemed to progress between shock, anger, sadness and eventually adjusting to my son’s disability. It does not mean I am never sad, or even embarrassed at times, but I continue to try and look at the many positives my family have.
We can potentially go in and out of a kind of ‘chronic sorrow’ and for some this lasts longer than others. I think I ‘grieved’ for about 18 months and for some time still experienced events that would trigger my emotions, such as statement reviews, or parent’s evenings (at mainstream school especially)!
Research tells us that parenting a child with special needs can bring higher levels of stress than other families and can bring a low quality of life, many pressures and demands, exhaustion, coupled with varying levels of support the parents have around them.
Many support mechanisms are out there such as local support groups, The Fragile X Society family, our relatives, close and understanding friends and professionals they engage with and whether the parents take extra good care of themselves individually and make time as a couple. We also need to remember that mothers and fathers may not ‘grieve’ at the same time or at the same intensity or same way. We are all different.
Some loss of aspiration may be there for you and your child, but I have found that changes with time and you begin to see your special family and their ‘wow’ moments and what skills they can offer and joy they bring us.
I know I have contacted The Fragile X Society over the years as our children have aged and developed. It was in 2002 when our son Ben (now aged 20) was diagnosed and his sister Abbie and I are both carriers. Abbie is very mildly affected but Ben has severe learning difficulties, which impact his life and he needs support with care and daily living tasks. But if you were at the Thomley Centre family conference in September, you may have noticed on the video compilation Ben dancing around doing his tennis ‘warm up’ in swan lake style! He is a very happy and chilled young adult. His only desire is food and food and any food he can get his hands on…usually chips, or garlic bread.
My daughter who is now 23 is very independent and now has a job with Specsavers in which she secured through the GEM (“GOING THE EXTRA MILE”) Project. She had a job coach who helped her to gain confidence and uncover the skills she has and use them in a very different career path. Abbie started out qualified in Catering industry, but after several jobs and very upsetting experiences which impacted on Abbie, she is now flourishing in an office role she loves. The people she works with are saint like and very caring! There are kind people in the world.
HOPE is important, and I would like to share how happy and humorous our children are. We thrive on humour in our house! Yes, the future may be uncertain when these children are younger, because none of us have a crystal ball to look into, but with parental love, education and social input our children can flourish in the right environment for them.
PARENTS FLOURISH if they are given the appropriate emotional support. This may be obtained from a combination of counselling, support from family, friends and support groups near you. I had 12 months of counselling whilst I was training to qualify as a counsellor and I benefited hugely. It normalised my feelings and gave me many positives, about me and my life, to reflect upon and answers to my personality and how I relate with others. It empowered me to look after myself and showed me that I deserve to relax and be pampered.
If parents are better able to cope the impact is passed to the children and benefits the whole family. Counselling gave me a renewed energy to use when the emotions are triggered, e.g. parent’s evenings, statement reviews, funny looks from people, etc. I can now recognise my feelings are totally normal for me and use them and sit with them. It is OK to feel vulnerable for our children and with time we can slowly learn to ‘let go’ a little and feel like we have done our best and we are good enough.
Counselling gives us extra coping strategies and builds our confidence as a parent and enables us to move forward in our lives and accomplish the things we want to do. Many people come to counselling not because of their disabled child but want to feel better equipped to deal with the child’s challenging behaviours, relationship difficulties, family, work or life in general. Counselling takes away loneliness and offers people hope if they are willing to engage in their own self-help process.
I hope this has given some families who have had a recent diagnosis some hope, because even if things have been bad, there is always hope, humour and an abundance of laughs along the way.
This article was kindly contributed by Julie Wales – for more information please see www.juliewalescounselling.co.uk