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Re: [Parenting Children with Moyamoya] Speech Therapy/Laurie

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  • jane wood
    Hello Laurie Thanks for taking the time to mail. Chloe has been seen by a speech therapist, when she firstly had a stroke she had lots of therapy and help
    Message 1 of 3 , Sep 1, 2005
      Hello Laurie
      Thanks for taking the time to mail. Chloe has been seen by a speech therapist, when she firstly had a stroke she had lots of therapy and help with her eating has she has difficulty chewing and often chokes. At the age of approx 3 we were introduced to Makaton (basic sign language) it was brilliant for the first time i knew what Chloe actually wanted instead of presuming. She still uses Makaton which is fine for home and School life but no-one else knows it and she struggles with peers playing out at home ect. I always wonder if she will ever be able to talk at all, she can copy certain words and i can recognise them, otheres probabley wouldnt but i can and if i say a word she really trys to copy me. It breaks myt heart, she understands everything, people think because she cant speak she cant understand but she can, too much simetimes !!! She is very nosey !!! Any tips you can give will be great.
      What age is Samantha, hope she is well xxx
      Jane (Chloes Mummy).

      Laurie <sparkln13@...> wrote:
      Hi Lynda and Jane,
      I'm Samantha's Mom, Laurie. I became a "Moyamoya Mom" this summer. I'm
      also a Speech Language Pathologist and was interested in Jane's
      question about how your children communicate. I certainly hope that a
      Speech Pathologist has been involved in their care. Sometimes doctors
      only focus on PT and OT. There are so many alternatives to spoken
      language and such great technology out there that I hope everyone is
      aware of it. I'm sure you veteran Moms are, but maybe some of the new
      families could benefit from your experience.

      I have worked in hospitals for more than 12 years with pediatric
      populations as well as adult stroke and head injured patients.
      Currently I'm a stay-at-home Mom doing occasional contract work as we
      are stationed in Seoul, Korea with the Navy. If I can help anyone out
      there with Speech and langage questions, please feel free to email me.
      If I don't know the answer, I'll find out for you!

      Laurie





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    • Laurie Park
      Hi Jane, Thanks so much for writing back. I ve never heard of Makaton sign language. I ve only learned ASL. I know what you mean, though, about the
      Message 2 of 3 , Sep 1, 2005
        Hi Jane,
        Thanks so much for writing back. I've never heard of Makaton sign language. I've only learned ASL. I know what you mean, though, about the communication being limited to people who know the signs. And also that people's perception of intelligence is often wrongly determined by how well someone speaks.

        I think its wonderful that your daughter tries so hard to speak. There would be little hope of her learning if she didn't copy so much. With her determination she should make great progress.

        In the meantime, have you been introduced to any augmentative communication devices? There are so many out there. Pictures, words, sentences. But the beauty is that many of them say the word for her. That has two benefits: others can understand what she wants to say and she can practice repeating the words on her own. How old is she now? Is a therapist still working with her? Good luck to Chloe.

        As for my daughter, she's 7 and started second grade this week. She has had TIA's and migraines but not a full on stroke. We've been very lucky so far. She still gets a lot of tingling and headaches but not as severe as she did before surgery.

        jane wood <ginger090177@...> wrote:
        Hello Laurie
        Thanks for taking the time to mail. Chloe has been seen by a speech therapist, when she firstly had a stroke she had lots of therapy and help with her eating has she has difficulty chewing and often chokes. At the age of approx 3 we were introduced to Makaton (basic sign language) it was brilliant for the first time i knew what Chloe actually wanted instead of presuming. She still uses Makaton which is fine for home and School life but no-one else knows it and she struggles with peers playing out at home ect. I always wonder if she will ever be able to talk at all, she can copy certain words and i can recognise them, otheres probabley wouldnt but i can and if i say a word she really trys to copy me. It breaks myt heart, she understands everything, people think because she cant speak she cant understand but she can, too much simetimes !!! She is very nosey !!! Any tips you can give will be great.
        What age is Samantha, hope she is well xxx
        Jane (Chloes Mummy).

        Laurie <sparkln13@...> wrote:
        Hi Lynda and Jane,
        I'm Samantha's Mom, Laurie. I became a "Moyamoya Mom" this summer. I'm
        also a Speech Language Pathologist and was interested in Jane's
        question about how your children communicate. I certainly hope that a
        Speech Pathologist has been involved in their care. Sometimes doctors
        only focus on PT and OT. There are so many alternatives to spoken
        language and such great technology out there that I hope everyone is
        aware of it. I'm sure you veteran Moms are, but maybe some of the new
        families could benefit from your experience.

        I have worked in hospitals for more than 12 years with pediatric
        populations as well as adult stroke and head injured patients.
        Currently I'm a stay-at-home Mom doing occasional contract work as we
        are stationed in Seoul, Korea with the Navy. If I can help anyone out
        there with Speech and langage questions, please feel free to email me.
        If I don't know the answer, I'll find out for you!

        Laurie





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