About two weeks ago I started working with a new client. This young man underwent a SDR (selective dorsal rhizotomy) about three month ago. Before the operation he was able to walk with a rolator under supervision but he scissored his legs a lot and his parents felt that he would never be independent. That’s why they opted for the operation.
When I meet him two weeks ago he had a hard time sitting up straight as his core was very weak. This is why his parents decided to hire me in the first place. They explained to me that he had extensive physiotherapy since the operation and that the therapist was working on walking. In fact she tried to have him walking with his legs in perfect alignment with the help of equipment and facilitation. The parents were told that they should avoid walking until he mastered this skill. In order to support his progress, they carried him. His way of moving around was someone carrying him, which meant he had no idea how to problem solve involving his body. Further this meant he had little opportunity to get to know his new body, as it now reacts in very different way then before the operation.
Consequently he had little confidence using his body and was very scared standing on his legs. We tried a couple of steps and he looked and felt more stronger then I expected. However he needed a lot of physical support because he tended to collapsed ( a common side effect of SDR) and felt very insecure about it. He also crossed his feet a lot, which made him collapse even more.
I talked with the parents about that the skills of sitting and walking as well as problem-solving, self-esteem and confidence are very much interlink and that to get the one stronger the other need to be worked on. We also talked about that its important for their and their childs physical and emotional health to stop carrying him. And that walking in perfect alignment is also my goal but that I think he needs the chance to learn to fix his feet so he does not panic in case they do cross.
I explained to them that all rehabilitation processes I have been involved in with children who had the SDR done, it was vital that they stood on their legs as often as they could to build up strength and stamina. They told me they would like to do more with him but its hard with four other children in the house, they simply have no time.. I discussed that it is important for him to be able to move more as part of his daily routine as this is more important then exercising. So instead of carrying they should walk with him, for the short distances in the house.When he has to sit himself up on the sofa I showed him how to help him, so he can get stronger and eventually do it himself. Instead of lifting him up they should help to stand up so he has an active part in it. The family has been involved with CE before my time and it made straight away sense to them.
I suggested to get their physiotherapist to contact me so we could discuss if keeping him of his feet was really necessary for his rehabilitation. A couple of days later I had a very nice email exchange with that Physiotherapist and she was very open to my suggestions. In fact she thought they were are good ideas and she agreed with everything I said (that was definitely very refreshing to the usual professional encounters I had). So, the family stopped carrying him and felt less torn between two professional opinions. I worked with him for a bit to build up his confidence as well as getting to know his body. We explored what he could do and how to move his legs in different positions. While we were playing games he was building up his strength. We practiced to reach in and out of his gravity point. He was scared to try and I ensured him he could do it and I would be there if something goes wrong, so he was safe to try. That helped him to get over his fear. Within a short time he was able to do more and more. And with everything new he could do, his confidence level rose.
During our last session he was able to take 44 steps with his rolator with me having my hands on his hips in case he collapsed. We learned that the only times he did collapse was when his feet weren’t in alignment or he stepped on his toes. With me giving him some small verbal guidance from time to time he could fix his feet position by himself. I shared this with his parents and recommended that they start using his rolator to walk short distances.
I think the important changes that happened were that he and his family had more confidence to try and stopped being scared of moving around. It’s going to be very exciting to watch where he goes from here.
Thanks for sharing this account Anne.
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