Let's get Sacha's therapy going again!
An update from the Sacha fund
It's been a hard year and a half—our hardest so far with Sacha. Covid-19 brought his main therapy programme to a halt and we had to cancel one block of intensive therapy after another. As we entered the winter months, and through lockdown, Sacha withdrew into himself. He grew increasingly anxious and apparently frustrated at his inability to communicate. While his mood has improved as Covid restrictions have eased up, we have lost significant ground compared to where we were with the successes of his earlier blocks of intensive therapy.
The good news is that we are finally able to travel again. The US embassy has granted us an immigration exemption on medical grounds, and we have booked into the NAPA Center in August for 3 weeks from 16 August. On the basis of experience, we have every reason to hope that getting back to NAPA will give Sacha the sort of boost that it has on previous occasions. As well as making a major difference to Sacha’s developmental trajectory, each block of intensive intervention has improved his confidence and mood.
Goals for Sacha's new round of therapy
1. to get communicating again.
On his first trip to NAPA when he was just 1 year old, Sacha first began communicating with a couple of words and signs. The “more” sign that he established there became a general way of communicating desire or affirmation: more food, but also “I want” and “yes”. This basic ability helped him to participate actively in a relatively wide variety of social situations. On his second trip, a particularly talented therapist, Shannon, managed to get Sacha communicating in a play context in a way that we had never seen before. These previous gains evaporated under Covid conditions, despite some NHS input in Sacha’s nursery context, and now, aged 4, he is essentially unable to communicate at all. With the daily sessions of an intensive intervention, we are hoping to re-establish enough basis for communication to give him the motivation to keep trying to sign and speak.
2. to learn to climb and descend stairs.
Sacha has been walking fairly well, albeit with an unusual gait, for some time now, but the weak, unstable knees that typically come with 2q37 Deletion Syndrome have kept stairs out of reach. We work on the movements every day at home, trying to build strength and stability, and stairs have gradually started to seem an increasingly realistic goal; intensive input from neurodevelopmental physiotherapists will no doubt get us much closer, or perhaps all the way there.
3. to start using hands more actively.
The neurological effects of Sacha’s condition that have made the rest of his development so difficult have left his hands weak and uncoordinated. He has been able to use them for things like feeding and for occasional play since about age 1, but he finds precise movements hard and has little finger strength. This seems to have contributed to a self-reinforcing pattern of discouragement from play and any activities that require hand use, which is a significant obstacle to learning. In contrast to the self-motivated investigation of the world that we see in typically-developing kids, Sacha tends nervously to shy away from investigating objects, as if assuming from the outset that his hands will fail him. Somehow we need to break out of this pattern, and on the basis of previous experience, daily intensive specialist input is probably our best hope.
We’re crowdfunding again to cover the costs this therapy. We still have some way to go to fund a proper restart of Sacha’s therapy programme. As always, we’re profoundly grateful for any help you can give: contributing, helping circulate, or helping us organise fundraising events.
Our current crowdfunder is here
You can also contribute with your own fundraiser (such as a sponsored event, for example), by clicking “Start fundraising”.
There are some other ways of donating detailed here
Dear bands, teachers and friends,
I hope you are keeping as well and strong as you can and playing lots of music. It has taken 33 years to get Under the Bridge to what it is today, it's benefited from the energy of many wonderful clever people whose skills and ideas shaped it to meet the changing needs and circumstances of our community. This spirit of community will help us to adjust and MOVE ON TOGETHER.
The health and wellbeing of everyone is our top priority. We've made additional changes to our policies and booking systems in order to adjust to advise from the Health and Safety Executive, and the Government as the Covid-19 situation develops.
With very much love and gratitude for your ongoing support,
WHAT WE'RE DOING TO ENSURE SAFETY...
- Each room now has a maximum occupancy to facilitate two metre social distancing.
- The entire studio has been repainted with wipeable paint, ready for stringent cleaning between users. We have removed all non-essentials and installed wipeable drum mats and pop shields.
- We are providing hand sanitiser in every room. However, we won't be offering drinks and biscuits for the foreseeable future.
- Half hour gaps between each band will allow for cleaning between bookings. We hope some will choose to practice in the daytime, to reduce pressure on evening bookings.
ESSENTIAL GUIDELINES FOR YOU...
- Please bring your own sticks, cymbals, guitar leads and microphones.
- Please make sure you book a room with suitable capacity. The Studio
will not allow more people in each room than its safe maximum.
- We will ask you to wait outside until your room has been cleaned.
- More details can be found in online bookings
Local charity sells handmade face masks
'One of our residents, a skilled seamstress who is a refugee from Iraqi Kurdistan, is making high quality masks to help minimise the spread of the Covid-19 virus within the local community.
The masks have a double layer of cotton, with space for a disposable filter (such as a paper towel). The top edge has a mouldable wire, to help fit the mask more closely to your face. They are hand washable, so they can be cleaned and reused when you next need to go out for shopping or essential tasks.
Our volunteers can deliver your mask(s) to you by hand (contact free), in the Brighton & Hove area. Outside Brighton, we will send them by post.
Please donate what you can afford - suggested donation: £6 per mask or £10 for two. Please add £2 to your donation to cover postage costs, if applicable. Funds will be used to cover the cost of materials, pay the maker for her time and support our charitable work of providing homes for refugees and migrants who would otherwise be homeless.'