Anne's adult son, Andrew, has Fragile X Syndrome. Here, she tells us about their life in the Far East, and shares her blog and resources for Coronavirus support.
"Hello! My name is Anne Donohoe and I have a son called Andrew who was 30 years old on 13.05.20. He has Fragile X Syndrome. I first became involved with the Fragile X Society in 1993, 3 years after its formation. It is a long story, which I won’t go into now, but we found out Andrew’s diagnosis through the post just having moved to Singapore for work. There was no support and no knowledge of Fragile X there then. Not even Autism was recognised. Luckily through the Fragile X Society, I got to know some of the founding members and also specialists involved, namely Dr Jeremy Turk and Charles Gibb, who still support the society today. It was the beginning of the internet and luckily Jeremy and Charles were kind enough to e mail me replies to my questions.
I am a teacher and quickly realised that I was going to have to create Andrew’s education myself as I did not have access to schools with any kind of special education department and the special schools available then in Singapore could not cater for my son’s needs.
As a consequence of this situation I created a home school programme and negotiated a school place for my son at an international primary school. I had to source, train and pay for a 1:1 assistant to go with Andrew. He could only cope with 1 hour of school at first before he had sensory overload and became behaviourally difficult. The assistant then brought him home where he had something to eat and a rest before the home programme that I devised started. I had to go out to work as a teacher to earn money to pay for his school, assistant and therapy. Gradually, over years, Andrew was able to go to mainstream school full time with his 1:1 support and also did up to 2 hours a day from my home programme.
Researching and delivering education in Singapore for Andrew became the thesis for my Master Degree in Education from the University of Sheffield. I was lucky in that I was also in contact with Mike Tranfaglia MD and Katie Clapp of FRAXA in the USA and Marcia Braden, and they agreed to read my thesis and comment on it.
From then, I have worked as a Special Educational Needs Co-ordinator (now SENDCO) in mainstream and special schools. Lived in South Africa and co-ordinated special educational needs across 8 schools. Been a specialist outreach teacher, Head of Autism, Head of Interventions and a senior leader. I now have my own education consultancy and set up my own on-line clinic about 18 months ago. During the last 18 months I have worked and volunteered in Malaysia with families, organisations and schools, in particular in Sarawak and Sabah, where there is still very little knowledge of Autism never mind Fragile X.
I spoke at the international conference on “Inclusive Early Childhood Education”, in July 2019 in Sarawak, Malaysia. I gave a plenary “Integration, Inclusion or Just Present?” and 2 workshops, “An On-line Clinic to Help Parents and Professionals” and “Life After School: An Illustration of Semi-supported Living Supported by Personal Assistants”. The last workshop involved a live link to my son Andrew in the UK who was able to show the audience in Malaysia his flat and semi-supported living arrangements. He gave them a guided tour using his i phone. He did really well but I wish he hadn’t focused quite so much on showing them his toilet. Luckily he had cleaned it!
My on-line clinic, that I demonstrated at the conference, means that I can see clients and families on-line and give advice and strategies. They can also send me information including video films by e mail. I have interviewed prospective Personal Assistants / Teaching Assistants for families and schools this way and completed training with them. I then follow up progress with the children, families, assistants and schools. As this on-line clinic was all set up and running before the pandemic I am well placed to continue this work.
During the recent coronavirus pandemic I was in contact with friends and colleagues in Asia before the virus came to the UK. A friend looked at the statistics and spread of the virus and advised me early in January that I should prepare Andrew for the consequences of the virus. I therefore started my preparations straight away. I was having to write the protocols for semi-supported living myself as there was nothing available. See my post on 18.3.20 “Preparation and Guidance for Parents and Care Personnel”.
I have been disappointed, shall I say angry, at the Government’s failure to recognise how vulnerable staff and clients in care homes and other residential establishments were, and are, to the coronavirus. Also the apparent disregard for anyone with a “disability” and the lack of guidance for those supporting loved ones in their own homes and in semi-supported living. I wrote to my local MP to express my concern about this and the lack of response and support from social care on 16.04.20. I am still waiting for my questions to be answered. See “Coronavirus – No PPE and No Reply”, post 28.4.20.
As regards my son Andrew, he has coped better than I thought he would. We involved him in the preparations and a stricter cleaning routine (see post of 22.03.20) He needs to be kept very busy, though, as you will see from my post of 23.03.20 and the slide show, showing all the activity boxes I prepared. I tried to adapt a lot of Andrew’s activities that he was familiar with to similar things that we could do at home. So, in his flat at different times of the week we created a “pub”, a “cinema”, a “café”, a practice session for his choir (post 09.04.20), a karaoke night, and a night club evening in his darkened hallway with disco lights, cocktails and a playlist on Spotify. We made the nightclub into a Zoom meeting and invited friends and relatives. We have also concentrated on healthy eating, “Eating and Maintaining a Healthy Weight” (post 08.04.20) and exercise, “Movement Skills, Fun and Daily Exercise During Lockdown”, (post 25.04.20). Mainly for fun he has also made “Travel Shows”, e.g. Singapore post 17.04.20, with his “friend” Tracy, a pink flamingo.
Together, my friend and I, decided it would be useful to add a coronavirus link on my website to share information, articles and peoples’ experiences and stories about Covid-19. This is what I would like to share with you today. All the resources are free and I have permission to share them. I hope you find it useful and please share among your friends and families. If you would like to contribute please contact me. You are also welcome to put my blog on your social media. FRAXA in the USA have also linked my website and coronavirus blog to their site.
We still have difficult times ahead, but hopefully sharing tips and information we can all help to make each other’s lives a little easier. Good luck and stay safe. Anne."
The Fragile X Society adds, 'Thank you, Anne, for sharing your blog and your resources about Coronavirus with us.