Setting out on my path of motherhood back in 2003, I never imagined that I would become mother, teacher, carer, advocate and a vessel for my children to take out their frustrations of the world on. With changes in laws, diagnosis processes becoming long and drawn out, mental health care sadly lacking and the never ending feeling that you are an obsessive over reactive parent has never felt more apparent than it does at the minute.
Juggling life with three teenagers one of whom is about to take GCSE’s, and a primary school child has been hectic to say the least. Factor in Disabilities of Sensori Neaural hearing loss, ADD, and possible ASD and life has suddenly seemed to be an endless array of appointments, meetings, activities, work, research and trying to stay sane.
One thing I have learnt though on this journey, is self discovery, the love of friends and family and that no matter what guidelines state, what boxes specialists like to stick us in, I have done and will continue to do the best that I can for my children. I research, I educate myself, I try and support those who are in the same boat, and its not easy. With so many other parents facing the same difficulties, the same barriers and the same never ending job of caring for our children.
We currently have two children, one who was diagnosed ADD in 2013 but in march 2019 was accepted for assessments for ASD by the NHS – so far no contact, no EHCP as she was deemed not bad enough. The second daughter who was refused by NHS for assessment on the grounds that there wasn’t enough school based evidence, which there probably isn’t as she Mask’s in school and at home, but they get glimpses when she refuses to go in at the start of the day and when she comes out and storms past me. I am so convinced I am not a bad mother that I have set aside the money to go privately for an Educational Psychology report. Is this the way forward?
This is just the next step in a long journey for me. After learning my lesson with my eldest who at 9 months old wasn’t babbling or making sounds, the health visitor asked for her hearing to be checked. A Paediatrician came out and did a test on my daughter. After 2 minutes he said it was normal as a first time mum to be worried, anxious and that I would do better to stop being over reactive. Well being 19 years old I was suitably chastised and apologised for wasting his time – fast forward 4 years and screening tests showed my third daughter had been born with a hearing loss. The Audiology department tested all of our hearing and my heart literally broke when they announced that my eldest also had the same Hearing loss. The moral of this story is that no matter what trust your instincts and ask for a second opinion as no one in infallible, not even doctors.
I am feeling more and more like a phoenix that rises from the ashes each and every day after each step back, each set back, each difficult day, once more to carry on and raise my children in a society that is still even now judgemental and where those that are suppose to give help and support and advice are as over worked and pressured as I am tired both physically and emotionally.
With so many parents struggling through their shared stories and views its evident there is an issue with getting the care that we need for our children and that parents are being blamed for their parenting skills TO YOU I SAY don’t give up, we are all the same striving to fight for our children rights and to give them the care that they need and entitled to……..ONE day there will be change