January to March 2019
Milly’s been getting her second teeth for some time now. The change of teeth actually goes very smoothly. Her last wiggly tooth, however, took its time forever and didn’t want to give way for weeks, so that it was captured at the photo shoot in mid-March. Milly hasn’t liked brushing her teeth so much since the beginning of the change of teeth, but still lets it happen if we talk her into it.
At the beginning of the year Milly was diagnosed with a slight underactivity of the thyroid gland, against which she was medicated. The medication (L-Thyroxin) in tablet form should actually be taken before breakfast. But Milly refuses. We grind the tablet and put it into her yoghurt with the Orfiril balls. L-Thyroxin should actually not be taken together with dairy products. We are still looking for a solution that is acceptable to Milly. It’s quite a balancing act, as there’s always the danger that she’ll refuse to take the epilepsy medication.
Soon the earnest of life begins for Milly, too. The last few months have been marked by the selection and registration of a school. For Markus and me it was always clear that we didn’t want an inclusive schooling for Milly. The care and nursing effort would be too high, therapeutic services are not available at a regular school.
It is also important to us that our child is received as it is and not just tolerated. After many years of controversial discussion about inclusion in schools and the lack of conditions for successful inclusion, it was not difficult for us to decide on the Martinsschule in Ladenburg near Heidelberg. The Martinsschule is a school for physically handicapped children, which also offers a focus on mental development. It is well equipped, and there are therapeutic facilities on site, such as physiotherapy, a Snoezel room, a swimming pool, etc. The school is also a great place to learn. They also teach Milly in small groups with a very good care ratio. There are even children’s nurses for medical care and in case of emergency or illness on site. Since we do not know how the further course of the disease will be, it reassures us to know that Milly will always be well looked after in such a case.
After the admission interview and the school visit last year, it was soon clear to us that Milly’s school would become ours. It was also warmly recommended to us from all sides. In the meantime we have received the approval of the school office and completed the school admission. On 11 September 2019 Milly will start the adventure of school.
With regard to her development only small steps can be seen at Milly, which we are of course happy about. It is important to us that she learns where it is within her possibilities to become more independent. Sometimes it is only very small aids costing only € 8 that allow a physically severely impaired child to become more self-determined. Milly’s occupational therapist drew our attention to a plastic plate rim that can be attached quickly and easily to a plate. Thanks to the edge of the plate, Milly can now (almost) alone shovel the food onto the spoon without it falling off her spoon during the eating process due to her lack of motor skills. The border of the edge ensures that the food remains on the spoon. Milly can then push the spoon up along the edge and lead the food to the mouth.
Since September 2018 Milly has been attending preschool in the kindergarten and is supervised by a special school teacher. She recently informed us that Milly is learning to communicate by eye using a Tobii computer. This was tried in kindergarten many months ago, but Milly couldn’t do anything with the device. Now we’re curious to see what new worlds could open up for her with Tobii. As Milly grows older, it becomes more and more important to develop her communicative skills, as she understands more than she is able to express. That frustrates both sides. But you can’t expect miracles. It takes a lot of patience and time to strengthen Milly’s communication skills. It shows, however, that the possibilities and scope for action of even severely restricted children can be expanded and that regular offers should be made in order to provide them with access to new forms of communication and thus to give them more scope for creativity. At the beginning of April we have an appointment in the kindergarten and want to have a look at the work of the special education teacher with Milly.
Updated 31 March 2019