Special child in care center

“What kind of mother abandons her child! So what, if the child is sick? After all, this is your child – how can you not care!” These are some of the comments made about mothers who place their seriously ill children in a social care centre instead of looking after them themselves. Is it right for anyone to cast the first stone?

Parents of seriously ill or special needs children face a difficult daily life. Some children may scream or laugh for hours on end. Then there are children with bouts of aggression or constant thoughts of suicide. Some children are immobile and need to be cared for around the clock – for months, years and decades. Are all mums able to do it? Should they be able to do it?

Consultants: AINA BRIEDE, chaplain of the Palliative Care Service at the Children’s Clinical University Hospital, GUNTA JAKOVELA, psychotherapist, MAKSIMS IVANOVS, director of the Department of Social Services at the Ministry of Welfare, and ELVĪRA KISELE, head of the State Social Care Centre Riga, Baldone branch.

Real life stories

Let me tell you a story I was entrusted with. “I was very young. My boyfriend left me as soon as I got pregnant. My daughter was born, and I had help from my mum and grandmother. My daughter was less than a year old when suddenly she started having violent convulsions and went into a coma. Severe meningitis. When we returned home after a long treatment, life changed beyond recognition. We lived far in the countryside and had no money, while our daughter needed constant care. Every noise would startle her, and she would convulse again.

For two years I spent every day with my little girl. As my daughter grew, it became harder to lift and accommodate her and I was afraid that she might get bedsores. When the social worker saw how tired I was, she suggested that I think about placing my daughter in a social care centre. I went there, looked around, thought about it and realised: yes, this would be better for everyone.

The beginning was terrible – I was so used to taking care of my daughter that I didn’t know what to do with my free time. I couldn’t forgive myself for not being there for my child all the time.

I went to the care centre and was ready to pick her up, carry her to the bus and go home. However, I was advised to take my time, and for that I am grateful.

I visited regularly and pampered her. I met a man, had my second child a year later, and my third one a few years after that. My daughter still lives at the care centre. She turned 14 this year. When we visit, I show her pictures on my phone and tell her about home. I have to accept that she is closer to the nannies than to me – she sees me as a stranger. But I can understand that. Have I done something wrong? No!

Had my daughter stayed with me, and had I given her all my life and love, I wouldn’t have had two more children. I see how much my daughter is cared for at the centre: how clean and neat everything is, how sweet the nannies are. I am not blaming myself for anything. Had I left a healthy child and not cared about her, that would be different. She is and always will be my daughter, and I will never forget or abandon her.”

Here is another story. A boy with severe mental disabilities was born and raised in a happy family. On some days, he could be quiet and well behaved, and even quieter the next day, until suddenly he was tearing up everything in his path. Mum and Dad were looking after the boy the best they could.

Then the little sister was born. The parents kept trying: a boy and a girl were growing up, until… one day the big brother attacked the little sister and in a frenzy of his illness bit her so hard that it took great effort to save the little girl’s life. It was a difficult decision, but the parents placed him in a social care centre. They went to visit him, brought him presents, while at the same time… they were very, very afraid of their own child, as the cruel abuse of the little girl was still in front of their eyes.

These are just two stories, but there are many.

Situations can be so different…
In Latvia, there are six State Social Care Centre branches for children: Baldone, Teika, Riga, Pļavnieki, Kalkūni and Liepāja. In March this year, a total of 232 children were staying at these centres, and 96 of them had their parents apply for placement. The parents have not been deprived of custody of their child, they are still their mum and dad, but for some reason they are not able to care for their seriously ill child on a daily basis. As evidenced by the medical reports, these are children with serious health problems.

According to the Ministry of Welfare, many parents would not place their child in a care centre if they had another choice.

In Latvia’s largest cities, parents have more option like day-care centres and specialised babysitting services, while in the regions such help is much less available. The Ministry calls on local authorities to think about how they can help their people, and pledges its support.

“It is best for any child to live in a family, and there is nothing better than a mum, but you cannot put the parents of all special needs children staying in care centres in the same category. Situations can be so different,” says Elvīra Kisele, head of the Baldone branch of the State Social Care Centre Riga. She is well aware of the daily lives of children in care centres.

According to the Ministry of Welfare, many parents would not place their child in a care centre if they had another choice.

Some parents take an active interest in their children, maintain regular contact, bring gifts, try to make them happy as often as possible, even take them home – they are still good, responsible parents. “However, mothers whose children are in a care centre usually don’t want to talk about it. They feel guilty…” says Elvīra Kisele.

The torturous road to the decision

After hearing that parents have placed their child in a social care centre, many are quick to condemn them because it is so easy. “Someone who says or thinks I would never do that cannot even imagine how they would act in that situation,” says psychotherapist Gunta Jakovela. Mothers are silent about placing their children in care centres because they are afraid they will not be understood. Who do you tell how much your heart aches for the sick child you cannot be there for? Who do you confess to how many sleepless nights you’ve had?

At any moment, someone could point out to the mother: it’s your child and your choice – take them home, then your heart will stop hurting and you can sleep peacefully!

How many people are ready to realise that the decision about a care centre is actually a long and painful journey?

Mum had to make a decision in which she had virtually no choice. What does the reality look like? A woman who had to look after a seriously ill child for a long time is very often left alone – the man leaves the family because he cannot cope with the stress. Many men find it more important to be living in the here and now than to hope to be able to start living someday. Whether a single mum with a special needs child can cope in a sustainable and fulfilling way depends on many factors, such as where she lives, her financial situation, her support network, etc. If these factors coincide in a way that makes it possible to care for the child at home – good.

But the situation could also be different: as much as the mother would like to be there for her sick child every day and see them grow up, it is just not possible.

“I remember a mother who was alone for a long time, heroically caring for her special baby. Suddenly, she was offered a job opportunity – a job she would love to do. Initially she worked two hours per day, then started bringing work home and worked at night while looking after her baby. Finally, she placed the child in a child care centre for a month.

She ran there every day to make sure he was ok. She brought him back from the centre and looked after him at home, then placed him back in the centre, until eventually she realised that the child was doing quite well there. A few years have passed. The woman is working and has sorted out her life. The child is at the care centre. The mother brings him home on weekends whenever she can. Everyone is happy here,” says Aina Briede, chaplain of the Palliative Care Service at the Children’s Clinical University Hospital.

The arrival of a second child is also a special moment. Having two small, healthy children is not comparable to having one child who is seriously ill and another who has just been born.

If the children are healthy, the situation changes every day: now the older one can eat by himself, now he can wait a bit or play. The special child, on the other hand, often doesn’t grow, doesn’t get better, and the care never gets easier. “You can debate what a mum of two kids should do, where one kid is seriously ill and the other one healthy. One might wonder whether it would not be wiser to invest as much time and energy as possible in the healthy baby. On the one hand, it might sound cruel, but you have to realise that the needs of someone who is growing and developing will often be much greater,” says Chaplain Aina Briede.

It can also be debated where is the benefit if a mother caring for a special child soon needs rehabilitation herself and not only by a psychotherapist but even a psychiatrist? Female and maternal instinct is to be with the child until the child becomes independent and can look after themselves. But then, there are special children who will never say to their mother: ‘Mummy, I am hungry’; ‘Mummy, thank you’; ‘Mummy, so good that you came’. A mother who just gives and gives and gets nothing in return can run out of steam. And then no one can have her – not even the special child.

No one has the right to judge

Mothers of special children are reluctant to recall the moment they found out their baby’s diagnosis. Doctors are often criticised for their tactless advice to give up the baby. Psychotherapist Gunta Jakovela believes that under no circumstances should anyone try to persuade parents to do the ‘right thing’. Instead, they should be given information on where to go for help if things get difficult. Anyway, doctors are not gods – they don’t know the future but can only make a guess. Because miracles do happen, and destroying faith from the start can drive parents deeper into despair.

During a crisis, parents perceive everything as very painful, and that is understandable.

“People are particularly sensitive when they have longed and dreamt of how beautiful everything will be, but the reality turns out to be completely different. Medical personnel needs to be very sensitive and find the right words. Often they can indeed at least roughly predict how much a special child will require from the family in a particular situation, but rather than sharing their medical knowledge, they should be able to tactfully and gently explain the real situation to the parents and offer them an opportunity to reflect rather than a specific course of action. But an invitation to think it over doesn’t necessarily mean that this is what mums should do.

I have met many mothers of special children who have no support, no peers to help them, no money, and they live far from healthcare facilities. I told them: go to a care centre and take a look. Go to another one, then a third one, and think about it! Is that a bad thing? I have been to care centres multiple times and seen how the children are doing, and I can only admire and thank the people who work there.”

“I would never judge a parent who places their seriously ill child in a special care centre. I can see how heavy-hearted they are about this decision,” says Elvīra Kisele.

“I think the most important thing to distinguish and understand is that a mother who places her child in a social care centre is not giving up her child! She is placing her child in a place that is specifically designed and adapted for dealing with such situations. There is a huge difference between abandoning a child and finding a place where they feel happy and that also improves the quality of life for the mother,” says Aina Briede.

Still, a mother who decides to place her child in a care centre is often tormented by an overwhelming sense of guilt. She thinks: ‘I must be a bad mother because I will not be there for my child’. Moreover, the mother of a special child may subconsciously blame herself: ‘I am a woman who had a sick child’. “I’ve listened to mothers tell me how hard it was to place a child in a care centre. This is a huge loss to mourn. The child is alive but we are not together. And the loss is double: first, the woman mourns having a sick child, then the fact of not having the child with her. It is very, very difficult.”

But no one has the right to judge. “Even a mother who never visits her seriously ill child in a care centre should not be blamed for anything. Maybe she hurts so much that it’s a defensive reaction. Not everyone has the courage and money to see a psychologist or psychotherapist to cope and live with their grief,” says Gunta Jakovela.

Is it a sin?
AINA BRIEDE, chaplain of the Palliative Care Service at the Children’s Clinical University Hospital, responds to questions:

Is it a sin to place a child in a care centre?
– No. It would be a sin for a mother to leave her sick child somewhere helpless, turn her back on and ignore the child.

Is a mum who puts her sick child in a care centre worse than a mum who looks after her sick child herself?
– People should never be divided into these groups: caring herself is good, not caring herself is bad. People are not the same: one person can do something, another one cannot, and not everyone should be able to do everything! We don’t know what is going on in a person’s soul. We don’t know their circumstances. And we have no right to judge someone for their best choices.

Why do mothers who have to look after a sick child say: “Everyone has a cross to bear”?
– What does it mean to have your own cross? Why interpret anything as a cross at all? If a person cannot do something, he should not play the hero, but seek help, a solution. Parents who see their sick child as a cross to bear should talk to social workers, psychologists, psychotherapists or other professionals to get out from under the burden of their imaginary cross and come to the conclusion whether or not they can do this.

It might also be worth thinking about your ego.

Yes, a special child needs special care, but you have to know the limits of what a child can and cannot do. Maybe you, as a Mum, can climb that mountain. But can the special child do it?

Who said the child has to climb this particular mountain? Why do you want to push them up there? Why try at all costs to make the child learn what they cannot learn? Of course, the child should be cared for and given all the help he or she needs, but don’t try to get more out of a child than they are capable of! Yes, it would be good if they could read, but if reading is too hard for them, let them not read! If a child has a limited life expectancy, we should do our best to ensure that the child lives the life he or she has been given as comfortably as possible. There is no need to try to make them do more than they are able to.

Once accepted, the imaginary cross no longer needs to be carried.

When a special child cannot do something, but the mother wants them to be able to do it at all costs, she puts a cross on her own shoulders, and when she is exhausted and can no longer bear it, she blames the whole world – doctors, the state, other people and, ultimately, even God. Parents of special children sometimes say: we will do everything possible! In fact, one should ask themselves a question: am I doing the possible or the impossible? When a person is overtaken by the idea of carrying the cross, they never really stop to think about what God expects of them, and what the special child wants. Sometimes, if they could say one thing, the special child would say only this: please leave me alone and let me live in the way I can.

The event is financially supported by the Society Integration Fund from the Latvian state budget allocated by the Ministry of Culture. The website has been developed with the financial support of the Society Integration Fund from the Latvian state budget. The Children’s Palliative Care Society is responsible for the content of the website.