Poem My Special Little Boy (For my beautiful son Jack, by his proud mum Nicki Zieth)

Poem The Blue Rose by Gerda Klein

The beach has been my backyard for the past 20 years, but it was only when my son was born nine years ago that I really started to make an ally of the ocean. Having had many sorrowful experiences at soft play sessions, baby groups, and library sing-songs, I soon realised that our true sanctuary was the beach. My baby, still undiagnosed, was struggling to find his way in the world, inexplicably not conforming to societal expectations. But through his blue space, he found his safe-haven, unchallenged by cultural expectation. In his primal state of infantile exploration, the beach became his chosen playground. Unwatched by his peers, who had achieved it far, far sooner, he first learned to roll back-to-front and back again, when lying on the soft forgiving sand, encouraged by the natural cambers that had formed the night before. His first experience of independent mobilisation was similarly exhilarating, a few months later, down the very same cambers, on his bottom. He would sit on the water’s edge for hours, the tide tickling his toes and the salty spray decorating his face, such effort taken in propelling himself just a few taxing feet forward and backwards, left and right, rogue waves catching him out and knocking his tiny and unsupported body to the floor as he giggled and gurgled in the water. He would sleep his best sleeps on those nights, sapped and satiated by his time in the blue. I loved the lingering taste of sea salt on his nose as I kissed him good night. I would really enjoy those times alone with him, escaping the pressures of new-motherhood by avoiding the inevitable conversations with fellow mums about milestones and progress and the looks, sighs, words of wisdom and sympathy. I welcomed its predictability, its consistent terrain, total neutrality, lack of territory or ownership. Every visitor comes with no greater or less entitlement to its offerings, just to borrow a bit of beach for as long as they choose, no booking system or timeframes to conform to, and no unexpected factors to scupper plans. In pastimes I had been a nervous visitor of the ocean, feeling like an imposter in a foreign and hostile body of water, anxious of its unpredictable movements and volatile behaviour. But while my son’s affinity with his blue space was showing no signs of abating, my own trepidation of the sea was swiftly diminishing, through the sheer non-negotiable responsibility placed upon me to facilitate his only true love and connection with nature. As a family we were happiest on the beach; the non-judgemental landscape was such a reprieve from the everyday challenges we encountered in our urban world.   His love of the waves was indiscriminate and in fact it was the days where the sea was at its iciest, stormiest or angriest, that he would shriek with joy the loudest. With my firm and protective hands round his waist, he would swim and splash, kicking against me to push farther out towards the blue horizon. I am unsure at what point I realised that he was swimming on his own, but it was certainly a long, long time before he could walk. His self-taught writhing, flapping and ungainly movements were somehow propelling him through the water, and alarmingly most of the time in an underwater motion. It was a challenge to remove him from the sea, as he would happily stay for hours, but the blue of his lips and the wrinkles in his digits indicated he needed reacclimatising. We would wrap him in his robe and he would shuffle to his same favourite spot and lie on the warm sand, slowly returning his body temperature to its regular state. At times we were guilty of overstaying our time in the water; the intensity of his enjoyment obscuring the signs of hypothermia, and his inability to self-regulate, identify and respond to, his own needs caught us out now and then. My boy is now nine and this Spring will see our tenth year of enjoying family time on the beach. Now a fully mobile, sociable and inquisitive child, he knows no social barriers, usually befriending a dozen families and as many dogs with his charming and convivial personality on any given day. His inability to grasp the concept of personal space and belongings has left us having to explain and apologise to strangers on numerous occasions about their punctured beach ball or flattened sandcastle structure. But mainly we find that people are beguiled and captivated by his gregariousness and loving manner and will happily share their borrowed bit of beach with him, and surrender their buckets and spades. So, I look forward to another season of sea, sand and sanctuary, in the one collective place that we can spend time as a family, unjudged, safe and content, with each of us in our true happy Blue Space. The post My Water Baby: The Therapeutic Power of Blue Space appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/my-water-baby-the-therapeutic-power-of-blue-space/

When people talk about accessibility the tendency is there to get a bit, well, technical. There are times when a lot of careful planning is needed (Changing Places toilets, wheelchair-adapted play equipment for example), but not all access issues are so complex to solve. We are lucky that we live close to a nature reserve. As a family with a dog, one of our favourite activities is to go out walking. We love being able to take the Dude out in his wheelchair, and as more and more places understand the importance of wheelchair access in terms of paths our options to go out walking with the dog are increasing. Unfortunately, whoever designed the access to the reserve hasn’t thought this one through as there is a permanently padlocked metal gate across the entrance and the only way round is across the make-shift bike access created by other walkers/cyclists/horse riders who use the bridleways and paths. The gate may prevent unauthorised vehicles, but it also makes it virtually impossible for all but the fully able-bodied access the public walking routes. Wheelchairs, pushchairs and the less-mobile need not apply. Another example is the humble picnic table. Often, Sam ends up stuck on the end as its impossible to get his chair anywhere closer. One of our favourite haunts (the wonderful Trentham Gardens in Staffordshire) not only has a Changing Places loo but has recently added these lovely wooden picnic benches which are designed to accommodate a wheelchair user. After all, it isn’t just disabled children who use wheelchairs – elderly relatives, adults with mobility issues, individuals post-surgery… wheelchairs are a common mobility aid, and no-one (I repeat, NO-ONE) wants to feel like an afterthought. It genuinely means a lot to families like mine when companies or attractions think about issues like this that may not seem big to many. To us, knowing that our loved ones can be included and that someone has thought about this means the world because to us, they ARE the world. The post Accessibility doesn’t have to be complicated! appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/accessibility-doesnt-have-to-be-complicated/

An letter to mothers of children with autism  This is for all the mothers who are considering getting their child diagnosed or who are coming to terms with a diagnosis. It is a reminder to celebrate diversity. Long before I received my diagnosis from the doctors, I knew I was different and that my life […] The post Celebrate diversity appeared first on Child Magazine . Latest blog from https://www.childmag.co.za/celebrate-diversity/?utm_source=rss&utm_medium=rss&utm_campaign=celebrate-diversity

TRIGGER WARNING: discusses child death It’s a fact of life that every one of us will at one point in time cease to be as a living, breathing person. Its inevitable. And while not the most comfortable of topics to discuss, it is important to do so. Both J and I are clear on what we want to happen after our own deaths. And as parents of a medically complex, life-limited child there are certain realities that we need to address. We will almost certainly have to bury our child, and while that is a devastating thought to live with it also means that we have a chance to prepare. I don’t mean prepare ourselves per se, as someone we know once said knowing that something is going to hurt doesn’t stop it doing so when it happens. What I mean is that we can decide what we want to happen, where we want our boy to receive end of life care and what that care might look like, and what interventions we do and/or do not want him to have. This comes in the form of an Advanced Care Plan; it’s something I have feared and run away from even thinking about for years. After all, my son isn’t actually dying is he?! He’s currently well, happy and enjoying his life. And as long as that is the case I can exist in my lovely, happy bubble and stay, well, sane. We are very fortunately to be supported by an amazing palliative care team; the Dude’s consultant explained an ACP is just like a Will, it is in fact called a ‘living will’ by some. It doesn’t mean we’re writing him off, but it does mean that our wishes are recorded so that if/when its needed we can focus on just being with him. I’ll admit that has helped me put things into a better perspective.  As a society we’re getting better at talking abut mental health, but we still baulk at talking about death; too many people don’t have a Will in place, don’t talk about organ donation, or whether they want to be buried/cremated/have a natural burial. If by talking about it in a positive way and putting things into place we can ensure that our son’s eventual passing is as peaceful and the best death possible, then surely that’s something we should welcome the opportunity to do? The post The battle to stay in balance appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/the-battle-to-stay-in-balance/

Poem Special Angels by Juanita Vaughan Hopkins

How to hire the aides and caregivers to support our children's complex daily needs? In this episode we discuss how to find the right people to join your family on this journey, and all the secrets to making this relationship so much more than just a part time job! Hiring help - YouTube The post Latest Podcast: Hiring Help appeared first on Firefly Blog . Latest blog from https://www.fireflyfriends.com/uk/blog/latest-podcast-hiring-help/