Jumbo voucher check
Two weeks ago, I went with Monique to the official presentation of the voucher check campaign of the local supermarket Jumbo Nieuwkoop. More than 329 euros was donated. We would like to thank everyone who donated their vouchers Tim. With this amount we have passed the first 1,000 euros. What a milestone!
Going to the first dealer
This week we managed to go to the first dealer together, a Renault dealer. Here, we have seen a Renault Master, which is similar to the model we have in mind. We have looked inside, felt what the bus is like and recorded some measurements; in particular the height of the rear ceiling and the length of the cargo space. The load space is very important to us. Two passenger seats must be mounted. A wheelchair space must be created in between. The space that is left behind must be enough for a changing table, so that we can change Tim’s diaper on the way. And of course there must be enough room left over to take his other supporting devices with him in the future. We have a good feeling about this bus. In general, delivery vans are evolving in becoming a passenger car. They drive more smoothly, have smooth suspension, smooth coupling and from the inside it is not only practical, but also a good design. Our challenge is still to make the “delivery van for the contractor” suitable for wheelchair transport. We discussed the options with the dealer. The dealer really wants work with us how we can make the bus suitable. To be continued.
Tim to the
rehabilitation doctor
Tim goes to a Mythylschool, a special school for disabled children. The
school is connected to the rehabilitation center. They are literally connected:
there is a walkway between the school and the rehabilitation center. The
therapists at the rehabilitation center see Tim 1 to 2 times a day. They train
with him individually or in a group in the classroom.
Tim is at the rehabilitation center under the control of a rehabilitation doctor. Here he is seen twice a year. Tim his progress and medical status are discussed. A physical examination is done. Tim is, apart from his brain damage, healthy. But what do they investigate? Because his brain does not control his muscles properly, some muscles are pulled very hard and others too soft. This expresses itself in spasm. Everyone knows the hand / wrist that is bent crookedly downwards. This is because certain muscles in the forearm pull too hard and cause this skew. This will shorten muscles in time. This is often followed by a greening of the wrist. Fortunately, Tim does not have this, but occasionally the wrist’s tilt. This is then checked and monitored. The back, other joints and muscles are also examined for deformations, shortening or skew. It appears that Tim has shortened hamstrings. The doctor will now see what we can do about this. In addition to the physical check, other problems are also looked into. For example: Tim has a sleep problem. He had to stay in the hospital a few years ago for this. Fortunately, no medical cause was found here, but it still remains difficult. He sleeps poorly: he is often awake 4 hours a night. This affects our night’s rest, but also of his ability to learn during the day in the classroom. Tim was operated on a few years ago: his muscles in the groin were cut so that they became longer. We go to the hospital twice a year with Tim to have a hip photo taken. Here the percentage that the hip is removed from the bowl is measured. In addition, it is examined whether all aids are still suitable or should change or increase. After we met the rehabilitation doctor, there is a large meeting with all therapists involved, with us as parents, someone from school, the doctor and other people involved. Then we discuss all this, check the goals and set new goals for the coming six months. The next consultation will come soon.
Talk to Tim
I sometimes get the question: how do you communicate with Tim, he can’t talk after all. How do you know that he does or does not want something? How do you notice that he likes you? There are different ways in which we communicate with Tim. It is your own child so you know him like no other. We immediately see what he wants in his facial expressions. But, sometimes we don’t understand him either. He has a special speech computer. This is a computer with a touchscreen on a standard. It looks like a thick tablet. With a special program you can create overlays, add words and sentences. A male or female voice then speaks the button that you tap. For example, there are overlays about food, playing, his supporting tools, feelings, people in his environment with photos, school cards, themes such as Christmas and more. You can navigate through the hierarchy.
Tim knows quite well the way in the maze of overlays and buttons. This way he can tap the drink button with one tap. You will hear: “I want to drink” or if he wants another snack: “I want a snack”. But it is also very complex for Tim. We often direct ourselves to relevant overlay, for example about food, during lunch. Sometimes we wonder if it is a coincidence if he clicks on something. But sometimes he really wants that, for example if he already has something on bread, he chooses: “I want cheese”. Ok Tim, first eat your sandwich and then you get a new sandwich with cheese. Sometimes Tim, like every child, gets angry. He just wants cheese and not first to eat his current sandwich. Then we are strict with Tim, there are rules, also for disabled children. He knows how to use his handicap to get something done. Then the challenge lies with us to see per situation whether he really cannot do something (which he normally can do) or whether he is tired now and really does not succeed. Then we have to feed him, for example, instead of taking his own bread. We reward him if he uses the talking computer well, by saying: “You have indicated that very well, Tim, that’s great” So we assume that he understands what we are saying.
We also use sign language and articulate more. We consciously seek eye contact. All these types of communication together is called “total communication”. Funny is that Lennard is now also going to sign “food” if he wants another bite.
Tim laughs: “I love you”
And how does Tim say he likes you or wants to hug you? Yes, that is difficult. He cannot express that in concrete terms. That is something you feel. Just like a baby who can’t do much. Then, just like you do with a baby, a look in his eyes can be very sweet and mean a lot. Sometimes Tim takes your arm or wants to feel your face. Or put his head against you. He clearly shows that he wants your attention. If he likes you being with him and hugging him, he is smiling.
Coop North deposit action
A while back we visited our local supermarket Coop and asked if we could be the goal for the returnable bottles deposit campaign. Owners, Tim and William, were immediately enthusiastic. Of course we could. They were aware of our project Bouwen voor Tim. The whole village knows about it. So since 22 November there has been a standard at the Coop in Noorden. From now on, it is possible to donate deposit vouchers for a bus for Tim. I hope that many people deposit their deposit voucher in the standard. Every bit helps.
Rosa Underwear Nieuwkoop
We recently had an interview with a large newspaper. November 29 was Black Friday. Sabine from Rosa Underwear, had read that article and devised a very special Black Friday promotion: she donates 10% of Black Friday’s daily turnover to a bus for Tim. Really amazing. We knew nothing about it and someone around told us. What a surprise. I immediately visited Sabine, owner of Rosa Underwear. Sabine said that customers who came to the store thought it was a very nice idea that the discount did not go to themselves, but to a charity project. Thank you so much Rosa for this great initiative!
Sponsors wanted
We are looking for sponsors. We hope for more promotions. How can you help us? You start a campaign yourself. Of course we want to help you with this. Both Tim’s grandfathers and grandmothers are impressed by the deposit campaign at our local supermarket Coop, and next year at two other supermarkets: Jumbo and Albert Heijn in our region. They are trying to start a similar deposit project in their neighborhood at a local supermarket. They are going to raise money for their grandson at Coop and Albert Heijn in their neighborhood. It would be great if this works!
Do you know a company or do you work for a company that may want to sponsor us? Follow the example of Rosa Underwear. You will help us a lot with these initatives. Great that Building for Tim is supported by so many people. Do you want to do something but do not know what or how? We can brainstorm about it together. We are happy to help you come up with something and make it a success together. You can also find some inspiration from previous initatives.
Of course, donations are more than welcome. Big or small. That does not matter. You can always make a credit transfer via our donate page, using a Bankaccount credit transfer or Paypal.
Thank you dear people for all your help and compassion. I’ll keep you informed. With kind regards Jessica