Jo is just like so many of the parent carers that we meet in our support groups and in our online community. Her son has several diagnosed disabilities and like so many SEND parents was juggling a million emotional and practical issues. There was the journey of acceptance and dealing with her inner turmoil, adjusting expectations and fears for the future. This is alongside learning and implementing new behaviour management strategie and a new style of parenting and trying to access the myriad of services, each with their different contacts, appointments, thresholds and gatekeepers.
As it is Down Syndrome Awareness Week we thought we would interview Leonie our Director and Development Support Manager to ask what she would like people to know about Downs Syndrome and to ask about her experiences of being the parent of wonderful Harrison. Leonie shares a really honest and open account of everything from the diagnosis and her joy and pride alongside the inevitable frustrating comment of others to how she has changed as a person.
We celebrate you and recognise ourselves within you and when we meet other Parent Carers, and the nods of knowing and understanding are exchanged, in our minds and our imagination we are doing something akin to the three fingered salute that Katniss gives to her community in The Hunger Games. You are amazing and never forget it.
The festive period can place big demands on time and energy, throw in with that the unchangeable challenges of a Parent Carer and there could be the recipe for burn out. We know all too well that you cannot pour from an empty cup, so how can we manage that stress and keep a sense of calm over the festivities?
A big way we express our love over the festive period is through the exchange of gifts, it is not everything but it certainly is something we enjoy. What if your child has sensory impairments and multiple needs and communication difficulties? What toys do you buy? What will create fun for the whole family? SENSE's play toolkits could give inspiration.
Language sometimes fails us. I had considered myself pretty proficient with the English language and its Bristolian colloquialisms, a confident user of terms such as “slider”, “smoovin’ the cat” and “gert lush”. I hadn’t had too much trouble making myself understood; that was until I had found myself on the unexpected life path of being a Parent Carer to a child with disabilities.
Here are 10 amazing quotes you should probably print out and stick to the fridge door and refer to every time you feel like giving up!