Under the spell of Corona

We don’t talk about anything else anymore, other than the corona virus. Logical, because what an impact it has on our lives. We have never experienced anything like this before. It started in China, far away. Now, it is suddenly also here in the Netherlands and close by. We must all be strict by making as little contact as possible so that the virus disappears quickly. But that is difficult and painful. We don’t like changes and nobody likes to cancel the nice things in live. Limited social contact is not easy, but it is really necessary. Even before the government mandated to close schools and public places, I already heard that Tim his school will be closed in the coming weeks. They are all vulnerable children. Also, his sportsclub ‘Only Friends’ in Utrecht closed its doors immediately. Now, all schools are closed; restaurants, pubs and hotels are closed; all sports clubs are closed. More and more shops are slowly closing. Events are canceled. It’s such a shame. Our country comes in a ll full lock down. Fortunately, there are fewer and fewer people on the street. It is for our own good.

Crowfunding initatives for Tim
I promised in my previous blog that nice cool campaigns are coming up. Unfortunately, that is now all very insecure. There are still many initiatives scheduled for Tim. Unfortunately, they all have to wait until after the Coronavirus:

  • Le Vingo, the ladies only bingo on March 31. Unfortunately, this event is canceled. But a new date is coming.
  • There would be 2 cupcake sales: in Alphen aan den Rijn and Bodegraven in the month of April.
  • A cupcake and rose sale at the village party in Nieuwveen on June 26.

In addition, three actions that we do not yet have details of because the events are canceled. Really very unfortunate. But very understandable because everyone now has much more important things on their mind.

Refueling for Tim at Esso Ter Aar
Which campaign will go ahead and is already running is the action “Tank and donate” at the Esso petrol station in Ter Aar (NL) on the West-Kanaalweg. By refueling here, 1 cent for each liter of fuel is donated to Tim. After refueling, you can choose a charity that you support when paying. Esso van der Geest transfers 1 cent for each liter of fuel to the chosen charity. Thank you people from Esso!

In addition to this campaign, the empty bottles deposit campaign is still ongoing. The following supermarkets are participating: Coop in Noorden, AH Terweeplein in Oegstgeest, AH in Hillegom, AH Western hemisphere in Amstelveen, and of course AH de Herenhof in Alphen aan den Rijn. Click here for all empty bottles deposit campaigns.

Because the entire public life has come to a halt, the campaign for a bus for Tim will be on hold. Our hope that we would have a bus for Tim this summer has already passed. It will be a challenging time, and especially a challenging time for our body, because Tim is growing and becomes heavier. Still, we hope that the bus eventually will come ….

Extra heavy package
How is our family impacted by all measures regarding the corona virus? We have 3 vulnerable children: Tim is a vulnerable child. Lennard is a big baby and therefore still vulnerable. Willemijn was in the hospital for 3 days a month and a half ago because she had breathing problems. With a screaming siren we went from the GP to the hospital to give her oxygen. Fortunately, that is over and Willemijn is back home. But it all falls under the “risk group”. For me, there are no changes. I have always been at home, I am Tim’s caregiver and I am used to be at home. Also, Hein works at home a lot. Now he is obliged to work at home only. He can no longer go to the office. But that Tim no longer goes to school and is at home all day, and is home with Willemijn and Lennard, is quite a challenge. What strikes me about a lot of news is that it is assumed that so many people are at home and that working at home means that you hardly or not work at all. As if this period is a kind of ‘punishment holiday’: not working and obliged to sit inside and see you entertained there. Unfortunately, this does not apply to everyone. A lot of people are still working. Many people work at home with the children around themselves. That is certainly very inconvenient.

Fortunately, the journal now also focuses on disabled care. Care for the elderly and general practitioner care has often been discussed, but you did not hear anything about the care for disabled people. While disabled people and their parents or caregivers have a very hard time in this situation. As parents, we can never offer Tim the variety, structure, safety, therapies from the rehabilitation center, regular rhythm and regularity of school. How difficult it all is when all firmness, certainties and structure disappear. How (behavioral) problems are amplified by the changed unclear rhythm. Home education does not work. In addition to the serious intellectual disability, Tim also has a serious physical disability. Tim does not understand what is going on. Explaining to him, won’t work. We haven’t said anything to him. Tim is almost 7 years old. His sister Willemijn is almost 4 years old, but we find it difficult to explain her. We notice a kind of fear and uncertainty in her.

Taking care of Tim is a challenge. You can only understand how extensive our care for Tim is and how much guidance we need, if you have been with us for a few days and nights and have taken care of Tim yourself: getting out of bed, shower, dressing, feeding, going outside, putting in the different supporting devices and then of course …the nights. The influence of the 2 other children who provide many incentives for Tim, but which you cannot always take away. Tim is awake for many hours at night, and so are we.

Consequences corona for Tim
We experience holidays as a difficult period, because Tim does not go to school and therefore does not receive therapy. At the monent, It is like a holiday for us. I hope it won’t last longer than 6 weeks. I will work with Tim on the goals of the therapy. Not with the aim of learning things, but during this period to maintain the skills he has. Exercise his gross motor skills what the physiotherapist normally does twice a week: for example cycling in his tricycle, walking in his walking supporting device or standing in the standing table device. Working on his fine motor skills, which the occupational therapist normally does twice a week: this involves exercises with his hands, such as exercising to turn the wheels of the wheelchair himself, holding his drinking bottle, holding the fork, picking up a ball and somewhere put in. Working on communication what the speech therapist normally does twice a week: practicing making sounds, practicing gestures, singing songs, learning to use the speech computer in all possible situations. Totally unfeasible to do all this at home with Tim. So Tim will make steps back in all his skills. It hurts that that’s going to happen now. And this only concerns his motor skills. No idea what this period does to his cognitive skills. Homeschooling does not work. Although, we do get a lot of support, sweet messages and input from the teachers. But this is nowhere matching classroom teaching. When he goes back to school, the question is how quickly he will pick things up and everything is back up to standard

Now, we have to use the Tim his special lift to carry him out of his bed, workingchair, wheelchair more and more. It’s much less of a hassle to lift Tim yourself and make transfers from his workingchair, to walking device, wheelchair or whatever. But Hein has more and more problems with his back. My back is also failing more and more. And when that happens, we just can’t lift anything anymore and that’s the last thing we want. His special lift to carry him seems ideal and the solution, but those who work with it know that it is a hassle, time-consuming and who is in it does not experience the pushing and pulling as pleasant. Certainly not an ideal situation. In addition, it is also still heavy. Tim will have to lash you upright if you put him in the chair, because he almost always stretches and does not cooperate at all. I don’t think I should do this to Tim if he’s a big grown guy. How heavy that will be. Respect for all people who work with adults in healthcare and who have to do this every day. So yes, unfortunately it is a difficult time for Tim and for us.

Living as a disabled person
What do we do all day? We stay at home as much as possible, shop as few times as possible and cancel all appointments. Fortunately, the nicer weather is coming and we can go outside in our garden. We shouldn’t think about either of us getting sick. I hope we will survive. But that means that the other must take care of the sick person and also our the 3 children. The other person will probably also get sick. Who can take care of the children? I don’t even think about it when one of the kids gets sick and has to go to the hospital. One of us will have to stay there day and night. What a difficult period it will be for our family. To prevent this, we do everything we can to stay in self-quarantine at home now. I hope everyone does the same as much as possible, because this is how we protect the weaker among us with all people.
Unfortunately, everyone is now faced with the restrictions imposed by government measures. Not only us as a family, but everyone must now learn to accept that our lives now have fewer possibilities: fewer activities, fewer social contacts and less mobility: living as a disabled person. This is exactly what Tim and we as a family always struggle with.

I realize that there are many people who have their own company or people who have been dismissed and so have no income anymore. Much strength to everyone to get through this exceptional period. We all empathize! Stay tough and stay healthy dear people.
See you again soon, but stay inside 😉

Dear greetings Jessica