For many of our families, travelling over the holidays needs to be thought through a great deal more than the average household. Map your toilet stops like you map your jouney!
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.
Many of our community know the difficulties that come with a diagnosis process, the roller coaster of emotions and the hours of feverish research as we try to make sense of the terms, typical prognosis and management strategies. What if, knowing that your child has health or developmental issues, despite many medical appointments the specialists cannot give you that name of a disorder? What if your child has a genetic disorder so rare and unique that they may be one of only two children known to have it in the whole world? How would that feel? Where would you go for support? SGPC spoke to Lousie, the South Glos rep for SWAN, Syndromes Without a Name who told us about her experience and how finding SWAN was a huge turning point for her.
Many of us have children who are, it seems, attached to their devices. They calm them, stimulate them, entertain them and allow them to interact socially in world of games and Apps that is less intimidating than face to face interactions. As parents, we are all too aware of the dangers of the internet
"I was just holding on to so much anger, resentment and confusing emotions. I was exhausted from all the battles with services and I just didn't know how to drop it all and move on. It was effecting every other area of my life. I was so anxious and low". Sound familiar? This is what one of Parent Carers told us, we will call her Nikki, which I am sure you will all understand is not her real name, although her words are very real. Nikki made use of our counselling service and found it life changing.
We love sharing great news here South Glos Parent Carers HQ and we also know just how big an issue accessible toilets are for some of our community, and how much lives can be restricted by such a basic need. Many of you have been penning letters and joining campaigns on the subject.
We were so excited when we found out that a Changing Places toilet was being installed at The Mall, Cribbs Causeway, we had to be to the first to see it finished.