Updated: Jun 17, 2020
Hi, I’m Julie Segev. You may have seen my keep-active videos featuring my son, Danny, who has Fragile X. I’m also a carrier. I want to tell you about our experience of this lockdown and how Danny came to be such a video star!
The first day of lockdown everybody was feeling really down...
I shut my dance school a day or two before the Government told us to stay home. I’m usually running about all over the place giving classes to hundreds of dancers each week. I'm also training as a classroom assistant so I work at a local school, and I'm the choreographer for a production of Shrek by Blackpool Operatic Society, which should have opened on 8th April. So, my working life is very busy, and I don’t get to spend much quality time with Danny. At times, this has made me very sad.
My son Danny is 20 and at college studying farming. His Dad provides most of his daily personal care. Danny has a really great social life supported by a local organisation for learning-disabled young people called Wave, and he’s out most evenings and weekends doing things. He’s also a talented swimmer and has won lots of medals competing for the Blackpool Polar Bears swim team.
When the lockdown happened, Danny was really confused at first, because overnight all his contact with the outside world stopped. It was just Danny and me at home, with my husband Oren still going to work for the North West Ambulance Service.
We explained to Danny what the coronavirus is and what it does, and why we need to stay at home. Danny very quickly missed his friends and felt really sad. He started to isolate himself in his bedroom, staying on his computer games and only emerging for meals. He likes his own space, but this was worrying, because it’s such a change from his busy, active life outside the house.
I made my first video really to boost my own mental health and to stay in touch with all my students.
I figured it would cheer me up, and cheer everyone else up too. I filmed to 'I’m Still Standing' and put up the video on Facebook. Someone told the BBC about it, and their local news team came to interview me at home. I didn’t realise at the time that it wasn’t just on our local news programme, the interview had gone national! So suddenly I had thousands of viewers.
Danny started to watch me rooting through all the boxes of clothes and make-up I had for dancing. I was using all my brightly coloured dancewear in the videos, and that led on to using costumes I’ve had for shows. I started my own YouTube channel and posted a daily video.
Then one day Danny asked if he could join in, so we recorded a little routine to You’re My Best Friend. It went really well, and Danny enjoyed himself, so now we record a video together every day. It means we are getting to spend much more quality time together which is making us both very happy. Danny is loving being a video star! He gets to perform and show off his sense of humour.
It wasn't always like this...
I remember when Danny was first diagnosed it was grim; they said he would never be verbal. He had a disability push chair until he was about 10. He would lie on the floor and have tantrums and meltdowns. He was in nappies until age 9. He had terrible anxiety. We never thought he would progress, and as he is a big lad, we worried we might not be able to manage in the future. He was very hyperactive, and he had medication for a while. We weren't afraid to try that, and it did help, although it wasn’t without its difficulties.
But we realised very early that Danny loved to perform. It started when he was about 5 years old and still in mainstream education. They had a Christmas show and Danny was a snowman. He adored it, and we couldn’t get him off the stage - he did about 25 bows!
Going to Great Arley special school in Year 4 was a real turning point for us: that’s when Danny started to blossom.
If you had told me then that he would be as he is now, I would never have believed it. Danny had opportunities to perform there, but it really took off for him at High Furlong, a local sixth form college and he really came out of himself. At about that time, Danny started to come and help me with my classes in the summer holidays.
Danny really struggled until he hit puberty, and then when he was about 13 or 14 he began to take interest in sport and clubs. By 15 he had calmed down a lot and he didn't need the meds anymore.
As parents, we’ve poured effort and love into Danny. We’ve never given up on him and made sure he had lots of experiences and opportunities. As a family, we've always travelled a lot, so Danny has experienced lots of different places and cultures. In that respect, he's been a very lucky boy.
Since we've been making the videos it's given Danny a daily routine.
Because we do things regularly at the same time it means we have a framework for our day. We didn't rehearse the videos at first, but I quickly realised that Danny could do a lot more than just copy me. Now we have a practice and decide together what we're going to do and wear. We work with what we have in the house.
Danny chooses the music: 'YMCA' was one of his, and so was 'Can't Touch This'. It was Danny's idea to do one of the videos out on the beach! It is 5 minutes away from us, so it counts as local exercise. And it was his idea to do a video in which we are both in the jacuzzi.
He sets a high standard for himself: for example, he will ask to do another take if he didn't smile in the video. He loves the costumes (but didn't enjoy being painted green). He is very intuitive - quite naturally clever about what will work. Danny is very excited that people all over the world are watching. He enjoys seeing all the comments roll in.
We’ve bonded like we haven't had the chance to bond for years. I'm always really busy, and he is looked after by college, Wave and his Dad. This time has made me look at life differently. When I go back to work, I don't want to be as busy as I was before. I need more down time and family time.
We’ll also be looking for some sort of drama or performing group for Danny to join. I would set up my own, but there we go again with the work/life balance...!
I just want to tell everyone who is going through a tough time with a child with Fragile X, don't give up hope when they are first diagnosed, because these FX children can amaze you.
Focus on your child and not their disability. Have belief that it won't always be as tough as it is in the beginning. Oren and I put a lot of effort into Danny when he was younger, and it was hard, hard work. But we loved him and never gave up. The schools have been fantastic. Some might say we had it easier with Danny than other families do, but we have had our share of difficulties and tragedies along the way.
"All I can say is, it’s been totally worth it."
You can see more from the Hot Foot Dance Club here!