It was during one of Elliot\u2019s appointments that someone first suggested that we get in touch with Sense \u2013 and actually, it was Sense who first discussed CHARGE with us before Elliot was diagnosed. <\/p>\n\n\n\n
After so many in-and-out hospital trips, it was such a relief to have someone come to us, to meet Elliot in our home. A woman called Bev came over from Sense, not just for an hour \u2013 she really gave her time, no rushing off or anything like that. She talked to us about multisensory impairments and Elliot\u2019s condition. <\/p>\n\n\n\n
Bev\u2019s expertise made such a massive difference and Sense has been in our lives ever since. <\/p>\n\n\n\n I remember taking Elliot to a Sense Centre for the first time on his very first birthday. We spent the whole day there and it was just so lovely \u2013 they were really relaxed days. Bev was there again, with two other specialists, and they took the whole day to assess Elliot and get to know him. <\/p>\n\n\n\n It was such an encouraging experience. I left feeling uplifted, thinking of all the things which Elliot could do \u2013 rather than focusing on the problems. <\/p>\n\n\n\n There\u2019d been so much uncertainty in the first years of his life. He\u2019d missed milestones in is development, like in his growth and movement. This was when our knowledge around CHARGE was still non-existent. <\/p>\n\n\n\n I remember when he was very little, because he couldn\u2019t crawl, he\u2019d just lie on his back and propel himself along with his feet. Sense were able to say, \u201cOh yeah, we\u2019ve seen these behaviours before. That\u2019s really common.\u201d <\/p>\n\n\n\n That meant a lot to us. It helped me and his dad switch mindsets \u2013 we stopped being fearful and just embraced it. From there, we supported him to take his first steps and start holding himself upright, it was just incredible. <\/p>\n\n\n\n In the first five years of Elliot\u2019s life, Sense was really instrumental in helping us to help him. Bev was still working with us when Elliot first went to nursery and then on to school. She\u2019d go in and guide the people that were working with him, advising them on how best to support him. <\/p>\n\n\n\n There wasn\u2019t a lot of experience or understanding of dual impairments, so it was amazing to suddenly feel sure that our son was getting the help he needed. That was the kind of wrap around support that Sense was able to give. <\/p>\n\n\n\n After that, Sense helped us to identify and transition into a specialist school. It was an excellent placement. The staff were really experienced in working with children who have CHARGE. From there, it felt like Sense had supported us to a place where we didn\u2019t need to rely on them, we had a network. <\/p>\n\n\n\n Looking back, it\u2019s clear that Sense had a massive impact on our lives. I\u2019m sure that reassurance they\u2019ve provided our family has been key in enabling Elliot to be the man he is today. <\/p>\n\n\n\n He has the skills and confidence to do the things he loves. He\u2019s super outdoorsy. We live right on the edge of the Peak District and there\u2019s nothing Elliot like more than getting out there. He\u2019ll be out walking or riding his bike is all weather conditions \u2013 we\u2019ve been out in snow! <\/p>\n\n\n\n We\u2019re in a good place now. Elliot\u2019s at college, but soon we\u2019ll start making decisions about what kind of supported living option would suit him. We\u2019ll be taking advise from Sense on this for sure. It\u2019s become natural for them to be part of these important steps in Elliot\u2019s journey. <\/p>\n\n\n\n![\"a](\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/05\/DSCN2157-600x450.jpg\")
Embracing life with CHARGE<\/strong> <\/h2>\n\n\n\n
Wrap around support <\/strong> <\/h2>\n\n\n\n
![\"two](\"https:\/\/www.sense.org.uk\/wp-content\/uploads\/2022\/05\/Snow-last-November-in-park-1-600x800.jpg\")
Moving in the right direction<\/strong> <\/h2>\n\n\n\n