Monday, September 17, 2012

Short Survey

Good evening to all!

I've created a short, informal survey regarding both this blog and the Facebook group. It will help provide some basic demographic information and also allow me to find out where in the world everyone is! It is a private survey and entirely confidential, I am the only person with access to the information.

Thanks in advance, and I hope you and your families are well.

Amanda


11 comments:

  1. please accept me in facebook,my daughter is showing signs of stereotypy and I'd like to get some support for this. first name mossy
    Thanks so much for setting up a group and site, it's very helpful!

    ReplyDelete
  2. This comment has been removed by a blog administrator.

    ReplyDelete
  3. Hi, I'm another (desperate!) Mum from the UK. I couldn't figure out how to email you so I've commented on here, I hope that's ok...

    I have 5 year old twin boys and a 15 month baby boy. One of the twins and my youngest have signs of CMS and it is such a relief to come across your Blog.

    My 5 year old, O, started showing signs of CMS when he was just a few months old. I've lost count of the number of people who told me it was "just a baby thing" when deep down I knew it was something more. My initial fear was that of Autism. He was significantly delayed in a number of areas. At 21 months he didn't walk, talk, point or wave but he made good eye contact. Since then he has seen a physiotherapist, occupational therapist, speech therapist and neurodisability specialist. They have described him as a "mystery" as he shares many Autistic traits but is not deficient enough in the social aspect to meet the criteria for diagnosis. Interestingly, during his ADOS screening his flapping was described as "very Autistic" and has always been his main feature.
    Fast forward to 5 years old and he's doing brilliantly. He's very bright and capable at school but, I feel, still has some difficulties with his social communication and control of his emotions. His flapping is as bad as ever. It was a revelation to read the Johns Hopkins study which described children with CMS as having other comorbidities. I am now more sure than ever that this is the correct diagnosis for my son.
    My youngest son, J, also displays the symptoms of CMS. Until today this really perplexed me as he has absolutely no other Autistic symptoms; he is the happiest, most sociable and interactive child you could hope to meet - the antithesis of his brother at the same age! But now it all makes sense. I'm convinced they both have CMS and that O's condition coexists with anxiety and perhaps OCD or ADHD.
    Incidently, they have both been diagnosed with hypotonia (low muscle tone) and I'd be really interested to hear if this is the case for other children too.
    Throughout all the various appointments with Specialists we've had over the years not one has mentioned CMS, I don't think it is widely recognised in this country but in my opinion it needs to be.
    I want my children to be diagnosed with this condition because I want them to receive understanding and compassion (particularly for O's issues which coexist). If they get picked on at school I want teachers to be able to educate the children. I want my sons to know that they're not "wierd" but that they have a recognised medical condition that can profoundly affect their day to day living. I want some advice on how to deal with it and, most importantly at this stage in their lives, I want to be able to educate their teachers and make them realise that they may need additional support with socialising and communication.
    I would love to hear from other mums, particularly in the UK. I want to do everything I can to make this a recognised condition for which my children can receive help.

    Thank you so much for this Blog, if anyone has any information which might help I would be ever so grateful x

    ReplyDelete
    Replies
    1. Hello, I know it is 2016 and your post is from 2013 but I just found this blog and what you have described above is exactly what I have been seeing with my children for the last 10 years. I have taken them to all the doctors you have listed above as well and they all just say it is a tic. I was also told that my son has hypotonia and needed to join sports and do physical therapy to build up his muscles. Now 10, he is dealing with kids teasing him and keeping up with assignments in a school setting, he is shaking in his chair and doesn't pay attention to the teacher which in turn, gets him in trouble (written up). So now I struggle to get him to attend school. How are your kids doing? Have you found further help? If you have found another website that is still up and running, please share. Thank you, Lia

      Delete
    2. Hello, I know it is 2016 and your post is from 2013 but I just found this blog and what you have described above is exactly what I have been seeing with my children for the last 10 years. I have taken them to all the doctors you have listed above as well and they all just say it is a tic. I was also told that my son has hypotonia and needed to join sports and do physical therapy to build up his muscles. Now 10, he is dealing with kids teasing him and keeping up with assignments in a school setting, he is shaking in his chair and doesn't pay attention to the teacher which in turn, gets him in trouble (written up). So now I struggle to get him to attend school. How are your kids doing? Have you found further help? If you have found another website that is still up and running, please share. Thank you, Lia

      Delete
  4. Hi....I see there hasn't been much activity on this blog recently. Is it still up and running? My son was recently diagnosed and there's not much information on the topic. Is the facebook group still in existence?

    ReplyDelete
  5. It is still up and running, but we are in the process of creating a new site. The Facebook group is very active as well and offers a more secure place to post questions...link is on the upper right of page.

    ReplyDelete
  6. Hi. I am a desperate mother from Puerto Rico with a government covered health insurance (Medicaid). I cannot receive proper medical consultation with this coverage for the diagnosis and treatment of a primary motor stereotype. My son has presented repetitive movements and over hyperactivity in school. He is 5 years old. Very smart and loving child. However in school the teacher complains that he can't stay still and that he makes sounds and seems living in an adventureous fantasy . He moves his hands a lot. What disturbs me the most is when he moves his neck making his chin touch his chest and swallows loudly. He also demonstrates an involuntary stomach contraction. He holds his stomach in and then releases his stomach outwardly with air. I have told his pediatrician I have visited a neurologist and yet no diagnosis. Please help!

    ReplyDelete
  7. Wow cool site I have already withdrawn money from here. Actually my girlfriend advised me and I decided to risk the risk and you elegant live dealer I wish you more victories

    ReplyDelete
  8. This article is very interesting and useful for all people as one of my inspirations and I am also grateful for the articles that I have read and learned

    bola88
    liga88
    dewa poker 88

    ReplyDelete