When we visited Mr T last week, along with other mum bloggers, we discussed the excellent help that several of us had experienced (as well as those aspects of the system which had failed us). We then talked about how this information could be developed into "Beacons of Good Practice" that the Government could highlight as examples to other areas who may not be doing so well.
Who you would nominate in your area? I am lucky because I would be able to point out a few "Beacons" with ease.
The first one that springs to mind is our "VI pre-school worker", an equivalent of Portage for VI children in Kent. When your child is born with a disability or SEN, you often don't know quite what to do for the best, where to go for advice or information, what to expect for your child with educational provision or even their mobility and independence. As J was born with a specific diagnosis, we didn't have to look for the help we would need, it just arrived - in the form of Peggy, our VI pre-school worker. Our Specialist Teaching Service in Kent offers a service specific to children with VI and when they are notified of such a child, they make the contact with the family so the family doesn't have to start looking for them. How much easier this made our life.
Peggy was our pre-school worker or as we liked to call her "the lady who brings the fun" and she made it all so much easier for us. She also allowed us to "enjoy" our son. So often, fighting to find the help you need makes your child a burden and you become his carer, secretary and advocate. Having Peggy took a lot of that away and we got to enjoy J's early years immensely
I can still remember the issue of encouraging J to walk. With most young children, you hold out your arms and give them big smiles and even demonstrate what you want; obviously with J this wasn't an option. However, I also remember not worrying about this because I knew I could ask Peggy. She was great, she had loads of ideas, lots of suggestions and more importantly, was able to advise that it would take patience from all of us. We worked tirelessly for months and then J rewarded us by taking his first steps independently towards Peggy during one of her visits; I can still remember how loudly we all cheered and how pleased he was with himself. Peggy shared with us that this was a first for her - to see one of the children she supported take their first steps - and I know that this is recorded on her visit report in his file, so it made me feel like we had given something back to her in return.
One of the most rewarding things was that Peggy always involved J's twin sister when she visited. When we were trying to work on J's touch and sensitivity, Peggy kindly brought along warm spaghetti, rice pudding and jelly for J to play with. We sat there with the nice separate pots but J was not interested so Peggy suggested that R play with them - at which point my beautiful daughter promptly mixed them all together and then threw them in the air. Our faces were a picture. The "sketti mess", as it became known, landed on J's head and slid down his face. We watched in horror, waiting for the scream but instead we got the deepest, most infectious belly-laugh ever. J then proceeded to help his sister throw the "sketti mess" around the room whilst shouting out "sketti mess" (and we did not have laminate flooring or a leather sofa) but his fear of touch was addressed! Making R part of the visit and activity was just one of Peggy's talents, she totally understood that J was a part of our family and we all needed to be involved with him and his development for it to work well.
Peggy was not just our VI pre-school worker, she was also our key worker - even though that was not her specific job title. She knew the world of VI inside out and happily shared the information with us. What really helped was that she gave us the information when we needed it. We were not inundated with leaflets, books and advice enmasse (which is often the case), we were provided with the relevant information at the relevant time. Every family is different and some of us like to think ahead and some like to live in the moment so, having a key worker (or a practitioner who knows the benefits of key working) ensures that the family gets the most appropriate person-centred service.
Our Specialist Teaching Service - VI provided exactly what a family in our position needed. We had support, advice, and information available, when we needed it. It provided us with someone who helped us when it came to nursery and someone who knew the local schools and actively played a role in J's transition. The success of this Good Practice is easy to see - spend an hour with J and meet this confident, outgoing little boy who is keeping up (and sometimes ahead) of his sighted peers. He is a bit cheeky and a tad outspoken - but then again, he is my son and I wouldn't have him any other way. If you read my post about J's diagnosis, you will see how much life has changed for us since we first heard the news. Without the Specialist Teaching Service - VI, I doubt we would be in the same place as we are now.
So who would be on your list of Good Practice? In Kent PEPs, we recently launched Good Practice Awards so parents could tell us when they were happy with a service, maybe you have something similar in your area?
Over the next month or so, we will share with you our other Beacons of Good Practice but we want to hear from you - what works well in your area? What service made a difference?
Latest posts by Debs Aspland (see all)
- Accountability: the number one change you would like - March 7, 2016
- Life Skills – are children with VI missing out? - March 2, 2016
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