In early spring 2013 we met someone who was to become a significant presence in Eddison (and our lives) beyond all expectation, and as she came into our house like a whirlwind of energy and fun we had no idea what we all had in store…
But to take you back a step before that, we need to tell you about another significant presence in our family journey; Denise Doms. About 10 months after Eddison`s diagnosis we contacted our local Primary School to initiate dialogue with them to find out what hurdles we were going to have to jump to secure Eddison a placement in mainstream school. After a very productive initial meeting they gave us several names of people to contact regarding helping us work through this minefield. And after a few calls and it seems discussion behind the scenes about where Eddison fitted in the system, we got a call from Denise, shortly followed by a home visit.
Used to helping families and children with complex physical needs, it seemed that Denise was the woman for the job, and was she ever!!! She seemed to immediately understand the nature of our restrictions, the likely obstacles and our anxieties, and she immediately sprang into action. Among many things Denise has done for us; right at the outset she was determined that Eddison should receive Home Education Portage Visits a view that was not widely shared within the Council because, as is a pretty standard response, “he didn’t meet the standard criteria”. However she stood her ground and eventually won them over and before long we would find out just what this Portage Service would mean for Eddison.
At this time, Eddison was just over two and we had, had to stop most of his previous play groups and clubs as we now knew them to be unsafe. Raife had been born and we were effectively housebound with very few safe venues that we were aware of and Eddison wasn’t attending any form of nursery. We were faced with the challenge of exposing him to the simple sensory side of growing up and exploring, knowing that he couldn’t (in daylight) feel textures outside (due to his gloves), smell flowers, get his hands dirty, just enjoy the simple pleasures. Also, with no soft play centers safe, and at that time no swimming, parks etc, ensuring that his gross motor skills developed in line with his peers was a massive anxiety for us.
And so in came Dawn Hurd, our Portage Visitor, or as we in our family call her LADY Dawn, which Eddison fixed on from first meeting her and has called her ever since! And without sounding too dramatic, it in every sense was the DAWN of a new era for Eddison and us as a family!
It started as fortnightly visits to our home where each session was a themed range of activities. Beach, Jungle you name it. Armed with sand, shells, bark, grass, fur etc she brought the outside in and encouraged him to immerse himself into these messy, mucky sensory delights. In turn he would show her things we had gathered in his own Nature Box, cones, feather, stones etc. Threaded through the sessions was of course some education work too, and Eddison very quickly learned that if he did them super fast he had more time for the mucky business of fun. Each week Lady Dawn left him with a selection of toys, tunnels, balls etc to keep until the following session, which he just loved.
As a parent it was an absolute joy to watch, as they giggled, cuddled, played and had endless fun, and he immediately bonded with her, and we watched his confidence grow so much in those early months. Often it was an emotional experience for us, watching him get so much pleasure from the very simple experience of putting his feet in sand or mud.
As we started to approach out first summer with Lady Dawn we were all starting to think “how on earth were we going to keep him fit and stimulated over the summer months”, but Lady Dawn had a plan and a wonderful one at that. We checked out the local children’s hub which has a small soft play room, sensory room and large open plan space and it was all safe (when UV lights were off, and lights dimmed etc). And so every week over the summer Eddison and Raife went along for 2 hours of mayhem. Cycling, scooters, running races, sand trays, paint, gloopy, sticky fun…even pretend snow one week (although never to be repeated on account of the mess!). Followed by jumping, climbing and diving around in the soft play and exploration of the sensory room! And to make it extra special Lady Dawn allowed Eddison to bring his best friend Finlay with him, which meant they could enjoy this together.
After summer the usual sessions returned, some at home, some at the centre and then as Eddison started nursery it was nearly time to come to an end, but not before one last summer of fun for the boys!
I cannot tell you what these weekly session have meant to the boys this year. They have looked forward to them all week and again been able to enjoy them with Finlay and on occasion other friends.
This summer Lady Dawn has provided Eddison with the most incredible fun, with fun themed playdates, including every little boys dream things; DINOSAURS, KNIGHTS & DRAGONS, OUTER SPACE and THE WILD WEST. They have hunted for fossils, made moon rocks, knights shields and sheriff badges, painted castles, buffalo, dragons and aliens. They have run, climbed rolled and laughed and squealed with sheer joy and excitement.
It is impossible to put into words what this has given Eddison and Raife for that matter, but to name a few, he experienced these precious firsts with Lady Dawn; he made his first sand castle, first mud pie, first snow experience. He has also benefited enormously from the one to one which has built his confidence and trust in others at a time when he was only surrounded by family and close friends in our own home.
But as our last ever Lady Dawn session came to an end last week, what it has meant to Eddison was written all over his face. After trying every trick he could to stall the inevitable for as long as possible and delay the goodbye, when the time came, he simply couldn’t and wouldn’t say goodbye.
And so after a very sad Eddison left and returned home in the car truly blue and emotional he declared when we got home “I am very sad about that” and when I asked if he will miss her, he nodded and said “shall we have her over for afternoon tea? SOON!!!”
Thank you LADY DAWN, for everything!
You were the perfect one in a million LADY for our one in a million boy and we will miss you lots!