Jean Christophe-Novelli admits he was in denial about the severity of his son Valentino’s autism before lockdown
Spending so much time at home has been eye-opening for Jean-Christophe Novelli. The French chef, 59, admits to OK! that the coronavirus lockdown has made him realise he was in denial about the severity of his son Valentino’s autism.
The diagnosis in late 2019 came just a year after the three-year-old was given the all-clear after being diagnosed with stage four neuroblastoma, a rare form of cancer, at just 10 weeks old.
Seeing just how hard life at home can be has also given Jean-Christophe a newfound respect for his fiancée Michelle Kennedy, 44, who he proposed to in 2007. “It’s been very challenging,” the former Hell’s Kitchen star tells OK!.
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The couple are also parents to Jean, 11, and Jacques, seven, who they have been homeschooling at their Hertfordshire home. Jean-Christophe also has a daughter called Christina, 32, from his first marriage.
Here, the pair open up to OK! about how they’re coping with Valentino’s autism in lockdown, their hopes for the future and why their wedding plans are still on hold 13 years later…
How are you finding being at home?
Michelle: We’re enjoying the time together. Valentino is loving being with his brothers. His physical abilities have flourished more than his mental capacity for the moment. He loves being outdoors with them, running, climbing and jumping – he’s so daring!
Jean-Christophe: He learns a lot from the boys, like confidence. Sometimes he’s in his own little world or he’s running about with them. Yesterday he was kicking the ball with them, which was amazing.
Michelle: Jean being here so much is nice, because he works a lot. It’s also nice because the boys do what they’re told with him. They’re wild with me!
How are you finding the homeschooling?
Michelle: Jean has his cookery school [Jean-Christophe Novelli Academy] here and he has made two little areas so Jean and Jacques have their own work stations.
Jean-Christophe: It means I can cook and keep an eye on them. We took the kids out of school a week before they shut because of how dramatic it was in France at the time. My dad and sister were begging me to take them out.
Have you been cooking as a family?
Jean-Christophe: Yes. I’m happy because now the kids are more involved with the cooking and they enjoy it. I used to batch cook before but now I’m cooking every day.
How has Valentino been?
Michelle: He’s a lovely little boy. He’s been a bit funny about his sleep and he has noticed there has been a change in his routine.
Jean-Christophe: Valentino is the clock of the house. We tried but there are no set times when Valentino wants to eat. It’s a constant thing making sure he doesn’t stress himself out.
Michelle: He’s started these little routines in the garden. He gathers things and puts them all in one place, then he takes them up the slide and watches them all roll down. He can do that for hours.
Jean-Christophe: Before lockdown, I didn’t realise that Valentino puts marks around the house to acknowledge where he is.
Michelle: He’ll place things and colour-coordinate them. In the hallway, I found two pairs of grey trousers stretched out and then a pink ball and a pink Lego brick in a snake-like pattern. It’s baffling but it makes sense to him and makes his anxiety subside for a while. It blows me away because I’ve never seen behaviour like it. He has a severe type of autism. The doctors told me that not a lot of things make sense to him but doing those little things do.
Can he communicate with you now?
Jean-Christophe: No. He is very frustrated. He can’t even say mummy or daddy, he just takes your hands. I feel a little bit sad in a way. It’s very challenging.
Michelle: He will take my hand out to the car and place my hand on the door as if to say, “We’re going out now.” You can’t explain a lot of things to him as he doesn’t really understand anything. He can communicate basic things by leading me by my hair or hand, like if he wants a drink. But I’m so in tune with him that I know what he wants before he does.
When your child is non-verbal, the speech and language therapists give you an idea of how to get your child to communicate if you’re not there. They ask you to put something in clear plastic containers, like a cup, so he can bring them to you when he wants something. It’s called object exchange. He also has an educational health plan he’ll be able to access when he starts school next year. We have tried to keep his activities up at home but it’s hard with two other children here.
Have the therapists said if he will be able to talk in the future?
Jean-Christophe: No, they don’t know.
Michelle: I don’t think he will. I can’t really see it happening. It’s something I’ve been struggling with for a while. I feel a bit more optimistic about his diagnosis now, as I felt I went through a mourning period a couple of months ago. I thought I was having a nervous breakdown. It was really difficult when he was diagnosed. I was hoping I was imagining things and I was angry. He’d already been through so much and I thought, “Why this too?” I was devastated, even though I kind of knew what was coming.
Jean-Christophe: It seems so unjust. I could see at one point it was a bit too much for Michelle. I saw her making herself ill over not having the answers. Being in the house so much now, I realise I was in denial about what was going on with Valentino. Before, I could be away for six weeks. Now I can clearly see it and it’s not easy. When you love someone you think everything should be positive. I’m still very positive but I can see that there is a lot of struggle there. It’s been very difficult for Michelle and the boys. We don’t have a nanny or an au pair. It’s also been very difficult because I’m out of my comfort zone while I’m not working.
Michelle, you said you went through a mourning period. How did you get through that?
I did. I have a good friend at the National Autistic Society called Louisa and they sent me books that have helped me so much to understand from a parent’s and a child’s perspective. Talking to other parents helps, too. I was too scared to find out about autism when they first diagnosed him. But my friend Claire Sugden forced me to go to a talk, because otherwise I would have bailed. I was so sad and depressed.
Now I feel more informed and less fearful. For me, that was an absolute turning point. I’ll be forever grateful for that. Valentino will be vulnerable all his life, he will always need us to take care of him. The fear of what would happen to him if we were not around is overwhelming. I have had panic attacks by overthinking it all but all we can do is give him our unconditional love, care, security and acceptance.
Have either of you sought therapy?
Michelle: I’ve found so much support in my friends and a lady at Valentino’s nursery. Before lockdown, Valentino did five hours a week at a church nursery and they funded his one-to-one care and she was fantastic with him. There is also this lovely poem by Henry Normal called Summer On Pluto – it’s heart-wrenching because we have lived the same experience as the writer.
How do you feel about Valentino starting school?
Michelle: It’s really hard and we don’t know exactly what we will do yet. We don’t know what he’s going to be like when he’s older, but all we can do is love him. I’ve been scared out of my wits with coronavirus because the thought of something happening to us and wondering who would take care of Valentino just frightens me.
Is he physically affectionate with you?
Michelle: He is, but not in the normal way. He doesn’t cuddle. He grabs hold of your hair, pulls your head towards his and makes your forehead touch his.
How are Jean and Jacques with Valentino?
Michelle: The boys have been so patient and kind. I’ve had to take them to things they don’t want to go to and then Valentino will have a meltdown about something. Going out with the kids is hard. I used to do so much with the boys and then we stopped doing fun things when Valentino was sick. Now it’s still difficult so I do feel guilty about that.
Jean-Christophe: I have so much respect for my two boys and daughter Christina because it’s difficult for them. They are part of making sure he’s fine and keeping an eye on him when we’re out of the room so he’s not hurting himself.
Michelle: He will only watch the baby channel and he tries to climb into the TV because he thinks the characters are real.
Jean-Christophe: We’ve had to convert our place to make sure it’s safe for him. We’ve turned cabinets around so he can’t open the doors or climb on them. We’ve also had to prepare the boys in case something happened to us. Our sons and my daughter would have a duty to make sure Valentino wouldn’t be abandoned. We don’t want him to be locked up in a room because people can’t handle him. It’s such a big responsibility.
When was the last time you saw your daughter Christina, Jean-Christophe?
A week before lockdown. She’s the best and she’s been sending messages to the boys and teaching them music over Skype.
Michelle: Christina has been amazing. I couldn’t go to her wedding. When she got married is when I found out Valentino’s autism was for real and I couldn’t even get on the plane. It was horrendous.
Does Valentino still have follow-up appointments after overcoming cancer?
Michelle: Yes, I think we have to do the next one on Zoom. I’m not sure how it will work. But usually they test his urine every six months as there is a chemical in there that is very high if the cancer has come back. They told us it’s very unlikely but they obviously have to keep an eye on it.
Jean-Christophe: Seeing him battle cancer and be lucky enough to survive, we feel so fortunate. He only just managed to recover. I don’t think it’s just luck as there were also some fantastic decisions with the treatment and the drugs. It’s a great feeling to know you can still keep the person you love. I felt completely hopeless. I’m quite protective and controlling but that situation was out of my hands.
Has everything you’ve been through with the NHS made you value it more?
Jean-Christophe: The NHS is one of the most precious organisations in the world. There is no favouritism. We live in a great country. I love my country – I will always be French, but I am so privileged to be here. I’ve been here for 38 years and I’ve never once had to think about why I came here.
Michelle: There are no words to say how grateful we are. It makes me cry when I see people clapping for them. They should all be getting a bonus. Mr Amos Burke and his entire children’s oncology team at Addenbrooke’s Hospital, and the paediatric team at the Luton and Dunstable Hospital, are constantly on our mind. They were so wonderful to Valentino, it will be difficult for all those staff right now.
Has lockdown put any pressure on your relationship?
Michelle: No it’s nice, I love it! I actually feel like me and Jean are on the same track.
Jean-Christophe: It’s great. What you want is more time together. What I’ve witnessed her doing with Valentino is amazing. It’s more than love. It’s a massive responsibility.
Michelle: My hardest thing with lockdown has been seeing Jean struggle with Valentino’s diagnosis. When it really dawns on you, it’s a hard thing to deal with.
After Valentino overcame cancer, you said that you would start planning your wedding day. How are the plans coming along with that?
Jean-Christophe: The plan is always there. We’ve never been like, “Let’s cancel it.” But with what’s happened over the last three and a half years, I think we have reason to wait. It feels like we’re already married anyway!
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Would you like to have any more children?
Jean-Christophe: Of course, that would be fantastic. But our priority at the moment, over the wedding and more children, is the world of Valentino.
Do you think that you will slow down with work once the lockdown is over?
Michelle: He can’t slow down, he’s a workaholic!
Jean-Christophe: I don’t think I will slow down. When you have children, you have an urgency to do everything you can for them. So I want to work and provide for them financially to make sure they’re looked after.
JEAN-CHRISTOPHE AND MICHELLE ARE HELPING TO RAISE AWARENESS OF CHILDHOOD AUTISM. FOR HELP GO TO WWW.NAS.ORG.UK.
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