ELIN WAS BORN TWICE

The couple and their young son had a lot of love to share. But was it enough for a foster baby with an intellectual disability?

WE MET AT A HOTEL IN THE TOWN PITEÅ, in the north of Sweden, where I am participating in a weekend gathering for foster parents and their children. It’s an opportunity for such families to meet one another, share experiences and listen to talks given by experts. On this occasion, family members from about 100 foster homes have gathered at a lovely centre on the northern shores of the Baltic.

As a behavioural scientist specialising in research on children with parents with intellectual disabilities, I am scheduled to give a speech about my own childhood, a childhood spent with a mother who was intellectually challenged. I am looking forward to meeting people who have the courage to get involved with children as emotionally scarred as I once was; people who give children a second chance at life. I have a son and a daughter of my own, but I have never had the courage to become a foster parent. It requires a very big heart and the strength to handle the pain and suffering that these children have experienced.

In the hotel lobby on the first day of the conference, a girl who looks about eight years old is happily bouncing about, her long, blonde curly hair whirling around her happy face. She is holding hands with a woman, and in her other hand, she is carrying a large bath towel. It is plain to see that they are mother and daughter – they have the same curly hair and similar body language, and a strong bond between them is very apparent. I assume they are staying at the hotel as a part of a family holiday and not for the foster family gathering.

The girl stops dead in her tracks to look at me, or rather at my shoes. They are pink with lots of lovely flowers and other curious details on them.

“Hi lady! I love your shoes! I’d love a pair just like them!” the girl says, and approaches me, not shy at all. “What’s your name? I’m Elin. I’m off to the hot tub with my mum.” The words trip on her tongue and convey her energy.

I barely have a chance to say “Hi” back, before they are off. Elin’s bright blue eyes and happy voice remain with me as I take the lift up to my room. I start to think about Elin and her mum. Where are they from? And what are they doing at this spa hotel?

While tying my same shoes later in the day, before heading down to

dinner, I suddenly remember Elin’s cheerful voice. Will I get the chance to see her again? I can’t stop thinking about the little blonde girl.

As the lift doors open onto the restaurant, Elin spots me straight away. “Hi, lady with the nice shoes! Would you like to sit with us?” she shouts. She immediately finds a chair at a nearby table and drags it over to hers.

This is how I get to know Elin and her family: her mother, Marie, father, Jonas, and brother, 12-year-old Oscar. Elin chats away all through dinner.

“Where did you buy those shoes? Were they very expensive?” The questions and information are endless. She informs me that she is about to turn nine, that she loves horses, dogs and cats, and that she plays the clarinet, and that she knows how to dance.

She wants to know if I have any children. I tell her that my daughter Jonna also loves horses, which makes her excited. Marie occasionally interjects that Elin needs to eat her dinner, too, or it will get cold.

When the clock is nearing nine, Jonas tells Elin that it is time to go to bed. Her brother says goodnight to the adults around the dinner table. But Elin wants to stay up a bit longer and talk to the “lady”.

“Elin, her name’s Lisbeth,” Marie tells her.

“All right, then. I’d like to stay and chat some more with lady Lisbeth.”

I manage to get a word in. “Hey, Elin. I’ll see you tomorrow, because I’ll be here all weekend.”

Elin falls silent. Then she looks at me. “Promise me you’ll join us for dinner tomorrow night, and I want you to join us for breakfast, too. Promise!”

I start to laugh and promise her that I will join them, adding that she had better hop into bed, so that she won’t be too tired the next day.

Elin’s voice trails off as she walks towards the lifts with her dad, and it suddenly gets eerily quiet around the table. Marie and I look at each other.

“Hi, great to meet you,” we say in unison and start to laugh. Marie offers me a glass of wine, and I accept. We leave the table, go and sit down in the lounge and start to talk about what it’s like to be a foster parent.

“Do you want to hear about when Elin came to us?” Marie asks.

I AM EXCITED TO HEAR MARIE TELL ME WHAT IT WAS LIKE WHEN ELIN FIRST JOINED HER FAMILY

“Elin?” I say surprised. “I thought Oscar was the one who was placed.”

To me, it had seemed obvious that it was Oscar, the quiet older brother, who had been placed with them. That’s the only logical conclusion I could draw after my short time with the family. It’s not that I think placed children should behave a certain way. It’s just that Elin has such a confident way about her, in the certain assurance that she is deeply loved, besides the fact that she and Marie look so much alike with their blonde curls, blue jeans and similar gestures. And their closeness is very obvious. I had just assumed that Elin is Marie’s biological daughter.

Marie bursts into laughter. Then she looks me deep in the eyes and asks me why I would think that.

“Because I get the feeling that you’ve carried Elin in your stomach,” I say honestly.

“Well, not in my stomach,” says Marie, “but I carried her around on my stomach.”

Enough Love to Share

I ask Marie to tell me her story. I am excited to hear what it was like when Elin came to live with Marie and Jonas and Oscar. I don’t know what to expect. I settle in my chair with my glass of wine, and prepare to listen.

“Her mother, who lives in the north of Sweden, is mentally handicapped and had five children. Elin is the youngest one. When she was born her mother couldn’t cope with yet another child, let alone five, so when Elin was seven months old, all of the kids were removed by the social welfare office,” Marie informs me. All the children were placed, but finding a foster home for Elin was difficult.

“One day in the spring of 1997 I got a call from social services. We had previously had a foster child who had been given protected identity status due to death threats from the child’s father,” Marie says by way of explanation. She stares into her glass of wine: I can tell that telling this story brings back strong memories.

“I guess that social services had you registered as competent foster parents after something like that?” I said.

“Yes, they probably had,” she said. “Now they told me they had a sevenmonth-old little girl who needed a new home. I remember Jonas and I sitting there with these two social workers in their office, thinking how wonderful it would be to take care of a little baby again.

“But there was something about their body language when they spoke to us about Elin. It was if they were hiding something from us. I started to get uneasy. I couldn’t focus on what they said. My mind was wandering, and I remember thinking that things might turn out the way they did the last time we had been foster parents, when we’d had to protect our address, so that the aggressive and dangerous father couldn’t find his child or us. It

had been a tough period, and I wasn’t sure I’d be able to do that again.

“My husband nudged me, and I came back from my thoughts and to what the social workers were saying. I apologised, and asked, ‘There’s something I need to know. I get the feeling you’re hiding something from us.’

“The room fell quiet, but eventually, they began telling us about how they believed Elin had a severe intellectual disability and that she could neither see nor hear. ‘ She doesn’t babble, she doesn’t follow your gaze, she can’t sit up, and she’s basically a vegetable,’ they said. ‘ We don’t know if it’s congenital or acquired,’ they told me.

“No-one in the room said a word. I was afraid to look at Jonas. My first thought was, would we be able to care for a severely handicapped baby? Would I be able to cope? And how would our son Oscar react to my spending all my time with the new baby? He had just turned five.

“But when I gazed into Jonas’s eyes, I knew that we didn’t have a choice. We both knew that we had a lot of love to share. So I said, ‘Of course we’ll manage!’ Jonas nodded in agreement, and in that moment I felt that we could manage anything.”

We each take a sip of wine. And somehow I can understand what she means, why she would feel so confident that they would be able to manage. After spending the evening in the company of this family I can tell that their relationship is unusually strong and harmonious. They obviously love each other very much, without restricting one other.

I nod encouragingly at Marie, prompting her to go on.

“Elin was staying at an emergency foster home, and we were allowed to

see her that same week. I was so nervous before we left, unsure of how I’d react. I didn’t even know if you could see that she was mentally disabled.

“I remember that first time we met, what it was like to hold her thin, stiff body. It was like she had no joints in her body. She was like a log. And her eyes were dead. There was no life left in them. Emptiness was all I could see. It scared me to see that there could be such emptiness inside such a little baby.

“The day arrived when she would come and live with us. By this time, she was nine months old. I recall it being one of those wonderfully warm days a week before Midsummer’s Eve, in the third week of June. The wind was a bit chilly, but the sun was warm. I lifted Elin up from the stroller, I patted her fine hair gently and talked to her. I told her that she would be living with us, and that we had done up one of the rooms on the top floor for her, and that we’d painted it in pale colours. I told her that we’d bought a new bed. No reaction. She just kept staring into space,” Marie frowns as she recalls that day.

“Right then, I felt a bit insecure, but just a tiny bit. We would manage this. If only she could feel safe with us, everything would work out just fine.”

Marie looks determined as she says this, and I can detect a will of iron behind her smile.

“Oscar had been waiting eagerly for the new baby. He had told everyone at the nursery that he would be getting a baby sister. The other kids had accused him of lying, because his mummy didn’t have a big belly. Oscar informed them that it was possible to have a baby sister even without a big belly. He had a picture of her, and her name was Elin.

“When we got home, he came rushing to meet us. He studied Elin for a long time. Then he said, ‘She’s really cute’, and kissed her forehead. They immediately found each other. Well, it wasn’t like Elin acknowledged him or showed that she could see him, but Oscar’s immediate love warmed all our hearts.

“Those first few weeks were like a honeymoon. Elin ate and slept normally, she never cried – she didn’t utter a sound. She was just there. I

ELIN STARTED TO SCREAM – LOUDLY AND DEMANDINGLY – BUT I COULDN’T TELL WHAT WAS WRONG

felt that this would work out, that we would manage just fine. We’ve faced tougher challenges than this.

“But the minute I had that thought, everything was suddenly turned upside down. Elin had been living with us for close to a month when something happened. Jonas had left for work and dropped Oscar off at his nursery school. I’d just put on a pot of coffee and was about to go out on the terrace and sit in the sun with the paper. That’s when Elin started to scream – not cry – but scream, loudly and demandingly.

I ran to her room and picked her up, but I couldn’t tell what was wrong.

Carry Her Close

“I tried to console her in every possible way, but to no avail. The screaming just got louder and louder; it was earsplitting. She cried non-stop for four hours before she finally fell asleep, exhausted, on my chest. But she soon woke up again and her heart-rending scream echoed between the walls. She screamed until she vomited. I tried to feed her, to lull her to sleep, to sing to her, to sleep next to her, to push her in the buggy up and down the street, but nothing worked.

“Eventually, it was impossible to be outdoors, because our neighbours looked at me as if I’d slapped her. So, I locked us in the house. When Jonas and Oscar got home in the afternoon, I was on the verge of tears, so Oscar took over. But he couldn’t calm her down either. Elin’s crying kept us awake all night. The next morning, I called the child health centre and asked for an appointment. ‘ Was she in pain?’ they asked. ‘ Was her life in danger?’ The way she was screaming, it could be just about anything.”

Marie takes a deep breath. I nod encouragingly while I try to compare Marie’s memories with the image of the vibrant Elin that I’ve just met.

“My childcare nurse visited the next day but she couldn’t find anything wrong with little Elin, either, so we changed the formula she was on and bought some new dummies. But that didn’t help either, so after another three days of constant crying and screaming, I called the children’s clinic and told them that we needed help, because our baby was crying herself to death.”

Marie gets a grim look. “The switchboard operator informed me that babies cry. Like I didn’t know that! But I didn’t give in, and I insisted on speaking to a doctor. I brought the phone with me to Elin’s room so that the doctor could hear the screams that were enough to wake the dead. The female paediatrician told us to come in straight away.

“She said to us, ‘ Babies won’t scream like that unless they’re in pain.’ We went back and forth to the hospital for two weeks, but they couldn’t find anything wrong with her. I was a wreck.”

All I can do is nod. My own children didn’t cry that much, but if they did, I

would feel terrible if I was unable to immediately comfort them. Trying to console a baby for days on end must have been incredibly hard to bear.

“Eventually I couldn’t take it any more,” Marie tells me. “I felt useless as a mother. I called my husband at work and told him, ‘I give up. I don’t think we’re cut out to take care of a severely handicapped baby, Jonas. We’ll have to hand her back. She’s been screaming non-stop for over three weeks now.’

“And that’s when my solid, loving husband said, ‘Marie, calm down a bit.’

“If he hadn’t been at work, I would have killed him there and then. Me? Calm down! I had no strength left. I was a shadow of my former self. ‘Something has got to give,’ I said, ‘or I give up. I don’t think Elin is comfortable with us, Jonas.’ ‘ Why don’t you just ask her,’ he said. ‘Ask her? You know as well as I do that she can’t see or hear anything. How am I supposed to talk to her?’

“Jonas was quiet for a while, and then he continued. ‘Just do as I say. Go and sit down with Elin on your lap. Explain to her that you want to help her, but that she has to tell you what’s wrong. She knows. Just trust that.’ ”

Now a little smile is playing on Marie’s lips.

“You know, I did what Jonas told me to do. I sat down in my favourite armchair in the sitting room with Elin in my arms. I looked into her empty eyes and said, ‘Elin, you need to tell me what’s wrong. I want to help you, darling Elin, but I don’t know what to do. Please help me understand.’

“And something happened. It was like she was talking straight into my brain. I looked at her and said out loud, ‘Are you sure? Do you really mean it? Is that what you want?’

“I looked around the empty room, afraid that someone might have seen me. They would most definitely think that I’d completely lost my marbles. There I was, talking away to a deaf, blind and severely handicapped infant!

“And that’s when I did it – as she had told me, or so I thought. I stripped to the waist, and I stripped Elin down to the nappy. I gently lifted her up and held her against my naked breasts. It was like she was docking, like a tiny spaceship, and she became silent. She was still stiff as a rod, but she was quiet. I started to walk.

“I walked around with her, skin to skin, every day, day after day, my blouse hanging loosely and unbuttoned. When I put Elin down to change her nappy she immediately started crying again, but as soon as I put her back against my chest she calmed down again. At night she’d lie across my chest in bed.

“Let me tell you. I developed quite strong arm muscles and abs. She was like a whole new baby, after all those weeks of inconsolable crying. But I had to keep carrying her.

“Eventually, after about a month, Elin’s body loosened up a bit, but her eyes were still vacant and dead.

The days went by, and Elin was still snuggled against my breast like a baby kangaroo. She was small for her age and looked more like a six-monthold baby than a nine- month- old. Her head would stick up between my breasts, firmly turned to the right at all times. The reason for this would become obvious when we heard her full background.

“Then one day, some three months later, she started to move her little head and have a look around. Her gaze was not as empty. We were starting to hope – and believe – that Elin could find her way back to life.”

As soon as Jonas and Marie had understood Elin’s need for closeness, they agreed that she, Marie, would be the one to carry and nurse Elin all the time. Elin needed that security, of attaching to one person only.

“I was alone with Elin a lot during these months. It was a little bit like nursing a premature baby. As I carried her inside my open blouse I didn’t go outside a lot either.

“One day, when I’d been holding Elin against my body for four months, I went to change her nappy. I put her down on the changing table and, as always, I larked about with her and made farting noises on her tummy with my mouth. I’d done it hundreds of times before. This time, though, she gave me a smile – her first – and then she laughed from her toes. I almost died, because my heart was ready to break.

“I lifted up her soft little body and ran to call Jonas. When he picked up the phone, I said, ‘She’s come back to life, Jonas. Elin has found her way back to life.’ And then I just cried.”

A Love of Life

There’s a sparkle in Marie’s eyes now as she continues Elin’s story.

“Everything changed from that day. She no longer needed to be close to me day and night. She had filled up her tank. She was ready for life, and she was in a hurry. You’ve met her yourself.

“She’s an energetic, happy and chatty little lady who will turn nine in about a month. This little girl who we thought was a lost case, with no chance of living her own life.”

I’m sitting there in my comfortable chair, fighting back the tears. Then Marie says that she would like to tell me what Elin had gone through before

SHE GAVE ME HER FIRST SMILE AND MY HEART WAS READY TO BREAK. SHE’S COME BACK TO LIFE

she came to live with them. It had been important for her to find out.

“I needed to know so that I can tell Elin one day, if she wants to know. I believe our story is important,” Marie says. “And, in order for Elin to have a good life as an adult, to become a whole person.

“The early months of a child’s life are incredibly important,” Marie continues. “Elin is the fifth child by parents who both suffer from a mental disability. She survived thanks to her inner strength, and she didn’t quit, even though her life was hanging by a thread many times.”

At this point in Marie’s story, I’m not sure if I want to know or if I can cope with the knowledge of what Elin had been subjected to. But then I consider that if Elin was able to experience it and survive, I should be able to listen to the story. Marie continues.

“The social worker started by telling us that they didn’t know the mother was expecting her fifth child. They weren’t even sure Elin’s mother was aware of it. Then one day, she was just there; a baby that they named Elin. For many years, the social services had tried to make the family accept their help. But it only worked out for short periods of time. There was no doubt that the children had been treated poorly, but the social services had no right to coerce the parents.

“Elin would be lying in a soiled nappy for days without anyone changing it. She had big sores on her bottom when she got to the emergency home. We also learnt that the mother would prepare four, five bottles of formula and just leave them there in Elin’s cot, and Elin would have to feed herself. She basically never left her cot during the first seven months of her life.”

Marie’s serious face breaks into a smile.

“But she loved life. It was like she was lying there waiting for us.” Marie’s smile grows bigger. “So, no, Lisbeth. I never carried Elin in my stomach, but I held her as close as possible until she had filled up her needs of love, closeness and warmth. That’s when she was born a second time.”