1 / 3Photo: Private/TT
Holidays are not wonderful and long-awaited for everyone. For six-year-old Liam, who has several NPF diagnoses, the long leave is rather an evil.
– The holiday is about survival, says mother Emma Bolmgren.
Liam has severe autism, ADHD and intellectual disability, so-called neuropsychiatric disabilities (NPF). He is non-verbal and communicates through images. Every day is governed by strict routines.
He gets up at the same time, eats at the same time, showers at the same time. Playing the same time. To feel well, Liam needs to know what is going to happen, which is common in children with NPF.
Therefore, it was clearly noticeable in his mood that it was summer vacation. From one day to the next, a routine everyday life was replaced by seven weeks of vacation where nothing was as usual. Also, one of the medications ran out.
– He had compulsive behavior in the garden so we couldn’t play there. If someone came and disturbed the routine, the whole day was ruined, says mother Emma Bolmgren.
Negative impact
According to Sven Bölte, professor of child and adolescent psychiatry at the Karolinska Institute, it is important to have predictability and routines for children with NPF. When these disappear during the summer holidays, it can create uncertainty and the child loses orientation, security and peace of mind.
– Compulsive behaviors are a way to recreate some form of control and some system you can feel safe in, he says.
Liam’s compulsive behavior affected the whole family, and Emma Bolmgren was off by herself with the children.
– He is very simple in normal cases, but when there is a break in the routine, it is different. Then he’ll just jerk me and if he doesn’t get what he wants, the whole village will hear it.
The siblings’ existence was limited because they could not disturb Liam’s routine. In the end, the family had to break the pattern as it became unsustainable.
– Many with severe autism do not have the ability to think long-term and may not even think for a whole day. When you have a compulsive behavior, it is what your whole life is right now, says Bölte.
Replace spaces
In Sweden, it is estimated that approximately ten percent of the population has an NPF diagnosis, but not everyone has it on paper. Many children and parents who think summer is hard come to KIND, a competence center where Bölte is the manager. He has many tips for how families should handle the leave.
– It’s a very big transition when you suddenly have a holiday. Therefore, it is important as a parent to try to replace the void that arises with another type of order.
According to Bölte, planning is essential for the child to feel as well as possible.
– It is good that you have foresight and a plan and try to make changes at the level that works for the child, he says.
Strict routines
This year, Bolmgren and her husband only have two weeks of vacation together. That means two weeks each alone with the children, and going away alone with them is basically impossible. To prevent Liam from escaping, a fenced area is needed.
– Now the holiday consists of surviving. The only time I feel sad is on vacation, when you see on social media that everyone else can do fun things as a single parent, says Bolmgren.
– I usually see it very positively, but sometimes you have to see it with other eyes as well, that everything is not gold and green forests all the time.
“Lower the requirements”
The family has gone on a few trips when both parents were off. It takes preparation for Liam to be in good spirits for a full day’s excursion.
– I make a schedule for the day with pictures where I explain what each picture means. It is very important which car we will go in, who we will go with, what we will do, what time we will do what and what we will eat.
Despite the fact that the excursions this year went better than expected, Bolmgren thinks that parents should let go of the demands on themselves.
– Children with NPF do not have to do a lot of things. We are the ones who believe they need to do it in order to have a good upbringing. But it is enough to go outside the door.
FACTSEuropsychiatric functional impairments (NPF)
– The diagnoses included in the NPF are adhd, autism/autism spectrum, language and speech disorders, learning difficulties, motor disorders (for example Tourette’s syndrome), intellectual disability.
– At least 10 percent of the population is estimated to have an NPF diagnosis.
– It is most common that the diagnosis is discovered in childhood and it is not unusual to have several.
– It is not known exactly why a person receives a NPF diagnosis. It can, for example, be due to genetic causes or environmental factors and the interaction between them.
– People with NPF can have cognitive changes which, for example, can make it more difficult to manage their own emotions, social thinking, overall perception and organizational skills. Many often have difficulty with social interaction.
Source: JobbaFrisk NPF/Region Stockholm
Read more