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Life Beyond Limits-Raising Kids With Cerebral Palsy

Public Group active 2 months, 4 weeks ago ago

This group is for those who know the joys and challenges of a raising a child with Cerebral Palsy. Together we will support, share advice that worked for us, and inspire each other on this amazing journey.

Introductions (5 posts)

  • Profile picture of Staci Staci said 1 year, 6 months ago:

    Let’s get acquainted. Please introduce yourself and share a little about your CP All-Star.

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  • Profile picture of Staci Staci said 1 year, 6 months ago:

    I am Mom to the most beautiful girl in the world. Diagnosed with Cerebral Palsy Spastic Quadriplegia, Lila has taken our family on an amazing journey of healing, restoration and amazing grace. Through her I have learned that human beings are not defined by the obstacles we face, but by our courage and determination to overcome. She is a sweet spirit with a warm heart and an infectious laugh that touches the heart of every person she meets. She is determined to live life beyond her limitations-she is my HERO.

    At 6 years old, my daughter has made amazing progress and continues to grow stronger each day. She wears AFO’s and uses a wheelchair and a gait trainer for mobility. She began speaking (through a lot of hard work) at the age of five years old and hasn’t stopped talking since. On any given day she is full of conversation, observations and silly songs. The most challenging tasks we face at this time are getting her to be mobile without her equipment safely and teaching her daily care tasks. Life can be hectic, crazy, overwhelming. We have learned to take it one day at time, savoring every moment and preparing as much as possible for the next.

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  • Profile picture of Ruth Nelson Ruth Nelson said 1 year, 1 month ago:

    I am mom of 4 children 12, 7 and 21 month old twins. Ashton, one of the twins, has Cerebral Palsy Spastic Quadriplegia as well. The rest of the children do not face any challenges of special needs. I don’t see this as just his challenge. I see this as a family challenge. We invest so much time with Ashtons therapy for him to gain strength and endurance, I often go to sleep at night feeling like I have neglected my other children. Ashton has therapy 5 days a week, I wouldn’t have it any other way. I feel that as young as he is with as much help as possible he will have a better chance at gaining independence.

    He did not ask to be here. We work to give him as much “normal” as he can obtain. He just started 6 weeks ago at a Conductive Education center. HE has made great progress. He was not sitting at all and now can sit unassisted for 15 minutes at a time. He was not engaging in steps but now will take several unprompted. We are so proud of Ashton. I believe that God gives us special needs children so we slow down and appreciate the little things. Every new word, every new function, they never seemed to hold much weight until now. Ashton has forced us to slow down and realize all the things in life we take for granted. We are truly blessed to have this child in our lives.

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  • Profile picture of M_B M_B said 10 months, 3 weeks ago:

    I’m so glad to see this group exists! I’m the mom to Roo, who has cerebral palsy that nobody knows the cause of and that nobody can seem to define – best we’ve come up with is mild athetoid/dystonic (though she doesn’t really have dystonia). She recently got SMOs (with butterflies on them!) and uses them in conjunction with a (gold!) walker right now. My girl is stylin! ;) Her biggest challenge is her speech/communication, but with two amazing SLPs on the case (one at home, one in school) I see her making strides all the time. I look forward to reading more from all of you. :)

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  • Profile picture of Janet Callahan Janet Callahan said 10 months, 3 weeks ago:

    My 3-year-old son had a grade 1 bleed right side bleed as a 27 weeker and was diagnosed with mild left hemiparesis last fall, though whether that diagnosis sticks remains to be seen, based on his improvements since then. My 5 week old baby girl (28 weeker, still in the NICU) also has a grade 1 bleed, though hers is bilateral. What comes of that remains to be seen, but our PMR doc wants to see her when we manage to get her home.

    Janet, mom to Acorn
    http://ourlittleacorn.blogspot.com
    Twitter: @kadiera
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