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    • #7368
      Angie Partridge
      Participant

      I have a potential client that is 5yrs old and has been diagnosed with SPG31 which is

      Spastic paraplegia type⁸ 31 is one of a group of genetic disorders known as hereditary spastic paraplegias. These disorders are characterized by progressive muscle stiffness (spasticity) and the development of paralysis of the lower limbs (paraplegia) caused by degeneration of nerve cells (neurons) that trigger muscle movement

      he has a lot of nerve pain and struggles to run.

      I have not worked with children this young although I can hold a clear vision of been able to help this young man I was wondering what your thoughts might be with which tools to pull out of the bag?.

      much appreciated
      Angie

    • #7377
      Gina Palmer
      Moderator

      Hi Angie

      Wow!! That the parents have sought you out for help is fantastic!

      a few thoughts came to mind as I read your post.

      do you have a referral? the doctor and therapists will have made a particular assessment. Have the parents been elsewhere for other therapies.. if yes, what were the results? do the parents have anyone else in family, including extended like this? You are very thorough and will have covered all the background. Get your knowledge base well covered on this topic and remember questions are the answer.

      This site may help as a starter about what is happening in the space of therapy in the area.

      https://sp-foundation.org/understanding-pls-hsp/treatments-therapies-pages/diet-and-alternative-medicine.html

      be mindful of language used in the article…. alternative therapies are not out of scope. I find working with children really positive when I am projecting positivity myself. They like fun and doable things and small steps…..

      you may have heard of Greg Moran a TJC graduate and quadriplegic. Read his story….

      hope this helps

      Gina

    • #7403
      Mark thrimawithana
      Participant

      dear Angie
      i am really keen to see how you will handle this child and i am sure there wil be something for me to learn from you as well.

      . i am not trying to share any relevant suggestions but I would like to share my little experience with a kid.

      i had a 14 year old kid who had multiple situations and he had fits and that has caused many other issues in his processing and that caused many other behavioral issues. he was under medication as well. i have never handled such a kid but i took it as a challenge. i read about the diagnosis and i knew what i was expecting and i carefully i updated my records about his behavior as he came to see me on a weekly basis. i was very clear with his parents expectations and i knew it was within my limits.

      my biggest task was Rapport and thats was the number one challenge i had. i knew his likes. he loved singing. i kept my sound set up already and i knew he likes Imagine by John Lennon. i watched the way he was singing and then i also sang.

      he said to his mother that he wanted to see me alone form the thrid week. i was over the moon. i did detailed analyses with his parents and i knew his strengths. i work on his strengths rather than his weaknesess. i went to his concerts and took pictures and i shared the detailed power in him. i even gave him a standing ovation when others were seated casue he did a god job on stage.

      he was addicted to a certain game and one day he jumped 37 times when he lost the game and that 37 was in that game where they were doing some shooting .. he agreed to let go the gaming. i simply changed those drivers by switching with animal hunting casue he hated that. and after one week, when i asked about the gaming, he said i am not interested in that any more and now i am more in to studies.

      Today he rides the bicycles on a daily basis, he sings , he started learning the classical guitae, he agreed to get an assistant teachers support to improve in subjects. he is honest with him than before, and he is a changed guy in three months.

      so my suggestions for you is. read and know your expectations/ find out the strengths he got/ empower his strengths to build trust/ believe in your self/ ask the parents their expectations/ see if those within your limits, accpet them and work on them and you can see the progress/
      there are some thing that we need to find and the creation will guide you and these kids are there for us to find taht and i am sure you will do and please share with me as well
      when you find the answers please share with me as well.

      • #7419
        Angie Partridge
        Participant

        Thank you for your share Mark.

      • #7670
        Amanda Pearce
        Participant

        Wow that is truly inspiring Mark. I learnt something from you there. Thank you

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