Maybe a lot of parents with children that have Poretti Boltshauser Syndrome have the question: will my child be able to work and provide for themselves? That is a very good and logical question. Even if your child is young, hearing about all these difficulties they will probably face is something scary. I want to tell you my struggles with work and how I solve them.
I have less energy in a day than the “regular” person. This requires a good amount of planning; something I have become increasingly better at in recent years. The planning should prevent me from being incredibly tired in the evening and just staring into space.
Now you may be wondering what problems this brings with it in working life. Well, to name a few:
1. Looking for vacancies
When I still wanted to work for a salary, I searched like crazy for vacancies that would suit me. But almost everything is 40 hours, or 32. And 32 is then considered part-time (which it is, of course). However, my maximum workload is around 16 to 20 hours per week. A job of 32 hours would have to be divided in two, so to speak.
2. Thinking vs. doing
I have what they call a dysharmonic profile. This means that I am better verbally than I am at performing. Sometimes it means that I understand an explanation very well, but cannot convert this into action so quickly. This makes it difficult for me to keep a job. I worked at the post office for a while (2 days), but it took me too long to get into the flow of the work. They thought I was too slow and I was sent away. While I really enjoyed the work, so that was a bummer.
3. Long days
My ideal working day, I have found, is from 9:00 to 13:00. That way I have the afternoon to rest, so that I go into the evening with some energy. So when there are meetings in the afternoon, for example, that is difficult for me. Meetings contain a lot of information, which I then process for the rest of the day. Sometimes I can’t sleep because of this, because my head is not yet finished processing when it is time to go to sleep.
These struggles made it hard for me to find a job. However, I got creative and started my own business. It was the only way I could work AND create good working conditions for myself. Now, maybe in the future, there will be more knowledge about people working parttime and why, so maybe in a few years there will be more part-time jobs available for people who lack the energy to work full days. But for now, I know it is difficult. I know a lot of people who are unemployed because they cannot find something that works for them.
Remember to know your strengths and weaknesses. This really helps you find your talents, passions and what you want to do for a living. Also, there is no shame in being unemployed because there is no work available that fits. I wanted to write this for you all to show that there are possibilities out there. It may be difficult, but in the end you will be able to do something that you love!