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Choosing the best for your family without prejudice

Photograph: Pexels

Text: Michaela Medveďová / Sara R. Newell

As parents, our role is to protect our children and ensure they receive the best care possible. This is all the more important if you are a parent to a child with special needs, and in some cases, you might have to tackle a difficult question - whether or not to move your child into full-time care.

We talked to a mother who has a child with special needs about her decision to move her child into full-time care, how to navigate the process, and how to deal with the guilt and stigma that unfortunately often accompanies this decision.

Selecting a new living space

In her experience, parents can start considering moving their child into full-time care when they feel they can no longer cope as a family. This can happen for many reasons, including a lack of support from family or kommune (municipality) for respite. Most people get support with one weekend a month (usually Friday after school until Monday morning) or more if you ask for extra support. Fighting for services for your child from the komunne while holding down a full-time job and caring for the rest of the family can be a lot to handle. According to research in the USA, divorce rates for families with children with autism are as high as 80% and for families of children with all disabilities that number has been touted as high as 85-87%.

The mother shared they were too burnt out in her specific situation. “We felt like we were not giving our best as parents to both our child with special needs and their sibling. Our child was not sleeping through the night and would wake up 2-3 times a night, which meant everyone had broken sleep. We both had full-time jobs, so we went from working all day to caring for our child until the early morning hours.”

The kommune started telling the parents from an early age that there are facilities that can support their child full-time, so if they feel overwhelmed, the kommune can provide it. Sadly, there should be more support or an option for additional home help, but it’s few and far between that have that kind of support, and once over 18, it becomes an impossible fight. Once you have mutually decided, the kommune starts looking for places, and you decide together before your child moves. “We looked at two places before we moved our child, but the kommune will always choose the most cost-effective one, which isn’t great if it’s not the one you wanted. There are not enough facilities in Denmark. Our child requires 24-hour care, and they battled to find places close to home, which is one of our criteria as we still want to be involved with all aspects of our child’s life.”

After selecting the place, the kommune will begin by setting a mutually agreed date when the child will move out of their home. The parents got to visit where their child would move to and see the room and the other children they would be living with. “They are very kind when your child moves to a bosted (the full-time care facility). They are very supportive of your child and your family. We received many pictures and calls in the first few weeks and came to visit whenever we wanted. We also got to bring him home for on and off weekend visits, holidays, etc.”

When engaging in this process, she would recommend talking to other parents who have gone through this process before through Facebook groups. It’s also good to check the institutions’ websites and read the supervisory reports (tilsynsrapporter) to ensure the institution follows the correct rules. What’s best for your child ultimately depends on their individual needs.

Walk a mile in others’ shoes

Besides dealing with the selection of the new bosted, the mother also experienced much stigma surrounding the decision to move her child to full-time care. “A lot of the time, the stigma is self-inflicted as I’ve found that most people, especially Danes, look at full-time care as a practical solution. Danes have a saying: You need to put the oxygen mask on yourself before you help someone else with theirs. But if you are an international, most sit with the guilt of giving your child over to someone else, that you’re not good parents - even though I’ve come to believe this was the right decision for everyone, and most importantly, our child.”

She mostly faced external stigma and strong opinions from people back in her home country, but she soon distanced herself from them. “I always say - walk a mile in my shoes. It was the hardest decision we have ever had to make, and unless you’re in the same situation, you will never understand how it feels. I think there needs to be more understanding. Perhaps if others share their stories and feelings, other people might understand.”

After their child moved out, the parents took time off work to grieve (it can feel like an unnatural loss), sleep as they had never slept before, talked a lot about their feelings, tried to handle their guilt surrounding the move, and spent time with their other child. “We also agreed that if our child wasn’t happy in the bosted, we would bring them home. But our child was so happy and fit in so well - having people around who had the energy we just didn’t have anymore. During visits, we became parents again, not carers – we just wanted to be mom and dad.”

Never take your hands off the wheel

The involvement after moving your child into full-time care varies from parent to parent. “I am very involved. I made the mistake of backing off and not keeping on top of my child’s care, and things started to slip. Now he lives in an adult institution - I constantly check on them, hold regular meetings, and continue to fight with the kommune. It’s important to still be in your child’s life as the kommune takes parents more seriously compared to a representative from a bosted. My advice is - never take your hands off the wheel, do spot checks on your child’s care.”

The biggest fear for most parents with non-verbal children/adults is abuse. “There have been isolated incidents in the media (and, of course, the bad stories bring out our worst fears), so it is a worry for all of us. My child has had his leg broken twice while in adult care without a reason why - the prime suspect is bad moving from his bed (using a sejl (hammock) to a wheelchair.”

The relationship between a carer and your child is very important. Most form close relationships with their carers as they become like a second family, which can be challenging and comforting for the parents. “The only thing I don’t like is when they try to take over and try to parent. A good carer should know when to back off and give parents space. Communication is the biggest problem in bosteds, so being honest and expressing your feelings is important. Another issue is the high staff turnover that happens in places like this. Your child can get close to a carer, and then the next minute, they’re gone. That’s not fair or healthy for your child.” Current research suggests that by 2030, Denmark will be short of 16,000 staff for the social care area – so there is a constant need for labour. It affects our children as those with high needs will get less and less care that they desperately need.

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