How we live with disability, from frustrations and isolation to closeness and strength

One mother found solace in this piece of writing from Rabbi Aron Moss: “These special souls remind us that true love doesn’t need a reason… These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are. These pure souls remind us what love should be.”

Liora with Miri[Missing Credit]

Liora

Liora had her first seizure when she was nine weeks old. At first, her parents Miri Cohen and Rahul Sarnaik did not expect it to be anything long-term, but then she started having 11 or 12 seizures a day.

“It got a lot worse,” says Miri, who suddenly found herself isolated from the NCT group she had been attending in East Finchley. “We were all in the same situation, and suddenly I wasn’t – we had ambulances outside our house several times a week. I think the NCT group didn’t know what to say to me, so they didn’t say anything. It was really isolating.”

Diagnosed with epilepsy, a chronic kidney condition and severe learning difficulties due to autism, Liora lived on and off in the Royal Free Hospital with her parents and had regular stints in the paediatric intensive care unit at Great Ormond Street Hospital when she was a baby.

“There was that sense of being in prison, that we couldn’t leave the hospital when she was hooked up to wires and machines,” says Miri. “I hadn’t been a mother before, so I had to learn how to be a mother in a very alien environment, which was really challenging.”

Miri had always wanted to be a mother. “Even when I was a child, it was the one thing I said was more important to me than anything.”

What kept the new parents going was the “intense love” they have always had for Liora and for each other, Miri says.

“Even when I was practically living in the Royal Free, I remember kissing her baby tummy and making her laugh, and breast feeding her when she had electrodes all over her head. Oddly enough, it’s a privilege to be on a journey like this as it shows you how strong you are.”

Liora with her father Rahul[Missing Credit]

Miri had expected to resume her job as a press officer for the Disasters Emergency Committee, but had to stop working. Instead, she became fluent in medical terms as well as several types of communication techniques, as Liora does not speak.

“It was like learning a different language,” she says. “And the funny thing is that people assume that’s what you want to do. Actually, I’m interested in international humanitarian affairs. People treat you differently.”

Practical help with Liora was non-existent for some years. When Liora was seven, a friend advised Miri to phone the council and tell them she wasn’t coping. “It was a real fight to get support,” she says.

The family decided to pay for help, but the new nanny left after an hour. “She was in tears, and said she couldn’t bear to see a baby suffering like that, which really reinforced our sense of isolation. We thought, ‘Well, if a professional can’t help us, then who can?’ Unfortunately, friends and family were too out of their depth. So, there was nobody.”

To this day, they remain friends with a German girl called Jess who would be in the house to hold Liora when she was having seizures, to enable Miri to spend some time in the garden.

“It was a major development,” says Miri. “But I couldn’t go anywhere. Whenever I went anywhere, she tended to have a seizure, and then we’d end up back in the hospital. So the early years were very hard. When the lockdown happened, I thought, ‘welcome to my world’.”

When she did eventually get a few hours of weekly support from the council, when Liora was 12, it was the money to pay for – but no help to find – the right care.

Now 18 years old, Liora is has just moved to residential accommodation half an hour from the family home in Brighton.

Miri describes her daughter as a “gorgeous” and “wonderful young person” who is “very funny”. “She’s our only baby, and we just love and adore her so much. She’s probably quite spoilt but that’s no bad thing, and she’s incredibly loving and affectionate. A lot of autistic young people don’t want physical contact, and she really does. We’ve been told she’s got a lovely personality, and is always popular.”

Spending so much time with her daughter has given them an extremely close bond.

“I really feel like a fulfilled mother, because what she and I have is so close. We have such a great relationship. In a way, because of her disabilities, I’ve stayed close to her. It’s a really pure and beautiful relationship.”

Miri advises any family with a child who has special needs to seek support early and protect their own mental health.

“I wish I’d known about Camp Simcha earlier, because they would have helped. It can be really isolating. When Liora was tiny, somebody told me, ‘don’t ever stint on therapy. If you have to get into debt, do it.’ Getting support is absolutely vital, because you will go under.”

Eden with Jill[Missing Credit]

Eden

At four days old, Eden Slotnick was found to have a chromosomal defect that meant he was born with global delay development. “We were just told to go away and love him, which was very easy to do,” recalls his mother, Jill Slotnick.

Coupled with the fact that Jill was a mature mother, it was a difficult and isolating time. “My friends were discussing grandchildren, and there I was with this little person, and I had absolutely no clue. I didn’t know where to turn and thought I was the only one in the world.”

Jill recalls how life became “harder and harder” – until somebody mentioned Norwood to her when Eden was two-and-a-half. She took him to Norwood’s Rainbow Group, a support group for parents of babies and toddlers with special needs. There, volunteers would look after the little ones while their parents sat down with someone from Norwood, and talked. “It was there that my eyes were opened to what was out there, and that other parents were struggling too.”

She adds, “It was incredibly valuable, and I knew that Norwood would be there on the journey. And they’ve been there the whole way.”

Now 25 years old, Eden is non-verbal, has learning disabilities and suffers from epilepsy.

“It’s like having a giant baby 24/7,” says Jill.

Life when Eden was little was lonely. Jill likens it to life during the Covid lockdowns. “You were isolated from society,” she says. “For the first time, it felt like you were living in my world. Because society can isolate you.”

Eden as a baby[Missing Credit]

When Eden was attending a Jewish nursery run by a synagogue, the other parents did not invite him over. “Back in the day, if you had a special needs child, you were kind of ostracised from society. I just hope it has changed now. The only other children and toddlers we saw at that time were those with special needs, so you just created your own little world.”

It made Jill realise that she had to be Eden’s advocate, speaking for him and supporting him and getting him everything, and more, that he needed. Fortunately, she says, Norwood was there to support them.

When Eden was four-and-a-half, he started going to Norwood’s play scheme. “It was great, because every Sunday it gave me a couple of hours off. The young volunteers who worked at Norwood were just incredible and would play with him. And he just loved it.”

Eden continued to go until he was 19, the age at which the local authority then stopped supporting a play scheme for someone with special needs.

“Technically he still wasn’t ‘adult’, but that was how the local authority see young people with special needs. At 19, they’re adult.”

Until having Eden, Jill had pursued her career as an interior designer for which she would travel all over Europe.

“All of a sudden, I wanted a child, and we were fortunate that Eden came along. Knowing Eden was going to be Eden, it was only correct that I put him first.”

Jill has always planned Eden’s life five years ahead of what was needed. At the age of 14, he attended a residential school and college for 38 weeks of the year to prepare him for adulthood, and he remained there until he was 23. It was then that he moved from term-time-only college into a Norwood adult accommodation service full-time.

Eden in his early years[Missing Credit]

In 2015, Jill had driven from her Hendon home to the Ravenswood residence where Eden lives now, to look at it.

“As I drove down the driveway. I just knew this was where I wanted him to be.”

The next stage was fighting the local authority for funding. A Norwood social worker had supported her throughout the process to get Eden to where he needed to be, and Jill drove back down a few years later to reconfirm that she was making the right decision. “Once again, I got that wonderful, magical feeling that this was the right place. It’s two years since he moved into Ravenswood, and it’s been incredible. He just loves it.”

Eden loves being taken on long drives. Jill used to take him to the park, but would drive up to Regent’s Park where they could just “mix in with the crowds”, rather than going to their local Hendon options. “If I went to a park in Hendon, you were made to feel uncomfortable because people stare,” she says.

Rather than go to the local swimming pool, they found privately owned pools that people rented out, for Eden to enjoy. “Everything we did was contained.”

Knowing how happy Eden is in his home in the Berkshire countryside, Jill wants other parents who might still be struggling to know that there is “great hope” for their future.

“I think my son has made me a better person. He’s taught me to appreciate life and everything in it. Thanks to my son, I have met incredible people on this journey that I would never have met if it hadn’t been for him. He’s brought me an incredible amount of joy.

“I’m extremely grateful for the support I’ve had from Norwood. He is now so happy. He’s got loads of space around him and people fussing about him, which he loves. I just couldn’t be more grateful. Yes, it was a tough journey, but we’ve arrived at the destination, and it’s fantastic.”

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[Missing Credit]Diana is an advocate for JBD and raises awareness of hidden disabilities

Diana

“We didn’t know what was going on in the beginning,” says Diana Young. “When I was pregnant, I was mostly in hospital, in pain. I couldn’t understand why all my friends were enjoying healthy pregnancies while I was feeling very unwell.”

Diana and Steve’s two children, Joanna and Michael, were born after very difficult pregnancies and births. But it wasn’t until the year 2000 that the family started to get some answers.

Steve, Joanna and Michael were diagnosed with the rare genetic condition Cowden syndrome, and eventually Joanna and Diana were diagnosed with Ehlers-Danlos syndrome. On many occasions, members of the family were admitted to hospital at the same time.
By the time her children had reached their mid-20s, Diana recalls how they had endured multiple surgical procedures.

Work had become impossible for the family due to the severity of the complex conditions the family endured. As Steve became the primary carer to his wife and children, the financial strain increased.
“Life changed drastically before our eyes,” Diana recalls of being a young couple with two grown children who were so unwell. The year 2005 was their turning point. At this stage, Diana was bed-ridden and spent a lot of time in hospital.

Jill and her husband Steve and two children, Joanna and Michael[Missing Credit]

“But I have always held on to the belief that everything happens for a reason,” she says.

She was then introduced to Jewish Blind and Disabled (JBD). The charity rehoused the whole family into two flats, on the same floor, in independent living.

“JBD is the key to independent living and is not a care home,” stresses Diana, pointing out that the assistance of 24-hour house managers at the end of a pull cord gives the couple confidence should Steve need to leave Diana at home for a short period of time. Also key to their independence is the apartment being adapted to suit Diana and Steve’s needs.

Now, Diana is an advocate for JBD and raises awareness of hidden disabilities. “It’s a subject very close to my heart,” she says. “I appreciate first-hand how hard it is for people to comprehend how it is possible to be bed-bound, wheelchair-bound and then be more mobile.”

For the family, JBD has been the “gift that keeps on giving”. Moving to JBD, they have made new friends who they now consider their extended family.

The family have also been able to practise their Judaism – a factor that has always been important to them – joining together to light the Shabbat candles, celebrate the festivals and take part in tenant-led activities.
Michael died in 2015, and Diana says her son is celebrated within the community for the mitzvot he carried out.

“His legacy lives on through his love for music, laughter and love for life, religion and tzedakah,” says Diana. “As we approach his ten-year anniversary we recall the greatest mitzvah he gave his sister, the introduction to his best friend Chris, now her husband.”

Joanna moved out of the JBD accommodation 20 years ago and has just recently moved back with her husband.

Diana says, “Every experience in life shapes our characters and fills our hearts. The tougher times made us stronger as individuals and so much closer as a family unit. It strengthened our faith.”