Parents of NPF-children are burnt out

Not so surprising that parents of NPF-children are burnt out and living on sick leave or partial sick leave.

It's a hard life with many obligations. We have meetings with the principal of our day care, we have meetings with the day care personnel, with the special pedagogue and then we have our habilitation institute were we have regular meetings with the psysiotherapist and the speech therapist, we have psysical therapy in a warm water pool once a week, and then there are some extra meetings each semester at the University Hospital due to her poor eyesight and her neurological difficulties.

I mean... it's a lot and you just want to do everything for her because we want her to have the best possible care she can get but it's hard trying to make time for everything and at the same time trying to keep up with work.

Now the speech therapist really wants us to do a kommunikation course once a week, for 7 weeks and 2-3 hours per meeting. I really want to get some pointers about trigging her communication which is almost non excisting but right now I feel like we are really spent and I just don't think we have the strength to take on another task.

It's like my therapist usually reminds me "when you're in the airplane you have to give yourself oxygen first, before you help your children". And that anology is so true - because if we parents don't have enough strenght then the whole family is at risk of crashing.

Stay strong!


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