This month, After Umbrage welcomed our first international carer family to Kingham Cottage. Katharina and her eldest son, Jan are from Berlin. They heard about us via a Facebook Group for parents whose children suffer with the same rare chromosome disorder as Katharina’s son, Mattis.
Life at home is stressful caring for Mattis and Katharina’s Mum and so Katharina and Jan enjoyed a short break for two in the UK taking in both London and Bath.
We had a catch up with Katharina and Jan, our first international carer family visitors, when they got back to Berlin. We tell their family story in two parts. Here is Part One.
Did you enjoy your UK visit?
“We absolutely loved it! It was the best break ever! Usually holidays involve the kids and, though fun, are rarely relaxing, as I am sure many single parents with young or special needs kids can confirm. Being away with Jan was a dream come true.”
“Jan and I crammed a lot in during our visit. Firstly, I never have time to really check on things. So I mixed up Bath and Brighton and we landed in London Gatwick. We made the most of the mistake though and spent the first day in London. We rode through the longest tunnel slide in the world and went to see the Harry Potter Shop at Kings Cross. On our return to London, we wandered around the British Museum.“
“Whilst in Bath, we had planned to just rest and enjoy the cottage. But, we ended up spending a big part of the day outside – walking across the fields and exploring the City of Bath. We also went through the two tunnels! I’m pleased that we were lucky with the weather.”
Had you visited the UK before?
“I used to travel to East Grinstead to learn “The Scotson Technique”, therapy that involves parents learning to apply light pressure on the muscles that are involved in breathing and posture. The therapy was a game changer. It really helped Mattis with his constant reflux and very weak muscle tone. I remembered those stays in the English country side very fondly. Although my days where entirely spent at the institute for brain damaged children, the Advance Centre, it was still great to take a short walk around East Grinstead in the evening or peruse the local Waterstones”, says Katharina.
Life at home
Jan helps out a lot with his younger siblings and my mother, so I wanted him to have a nice break as well. With the situation being stressful at home and him being a teenager, we quarrel and it was nice to have great bonding time.
Tell us about your family
“I am a single mother. As with many children with special needs and their therapies, not every couple manages to keep things together.”
My son, Mattis, has a rare chromosome disorder which results in mental disability and walking impairment. He is a great kid but not a single item of our travel and fun list would have been possible with him on the road. Mattis is impatient and can’t be left on his own. He has a natural curiosity and loves to touch everything. He likes to experiment with alternative uses of everyday tools. We keep an eye on him 24/7.
“I care for my mother too.”
“My Mum moved to Berlin two years ago to support me after my marriage break up – to support me and the kids. Sadly, she suffered two strokes and is now disorientated and completely non-verbal. I have some help. A carer comes to wash her on weekday mornings because I need to work and she gets meals on wheels. As she can’t go out alone, I accompany her outside the house which includes her shopping, doctor’s appointments and therapies etc. “
“Mum’s speech therapy takes place at home. She is lonely though, because her visual sight is impaired as well. She can’t read or write anymore or use a phone and has thus lost the ability to communicate with old and new friends. I pop in three times a day, to help with her meds and everyday tasks.
What is a typical day like for you?
I get up at six to get Mattis ready for the school bus that picks up at 6.45am. Then I help Jan leave at 7am followed by waking up my youngest, Dan and taking him to school. Then it’s time for me to get to my job.
Three days a week, Mattis and Dan are picked up by a babysitter as I get home at 6pm. On the other two days I work at home for one and half days and manage therapy visits and doctors’ appointments in the remaining half day. Between home and dinner, I do the shopping and washing, cooking etc. then we have dinner around 7pm. Tidying, laundry and making lunch boxes happen after that. I also take care of my Mum’s dinner and meds. By the time everything is finished – including bed time rituals and teenage problem solving – it is around 10 pm. Only then do I get to actually sit down and relax. Honestly thought, since I need to get up early I mostly just go to bed!
Coming up in Part Two we have more from Katharina. We learn about her job as a teacher, her view on life, skills she adopts to cope with the stresses in life and how she’s known for being positive.
Thank you, Katharina, for sharing your story and being our first international family to visit Kingham Cottage. Readers – do join us over in Part Two where we learn so much more about her family life and approach.