Any CP moms out there?
skylark94
Posts: 2,036 Member
My 7 year old daugher, Lily, was born 15 weeks premature. She has cerebral palsy as a result of bleeding on the brain. The biggies in her long list of issues are hydrocephaus (requiring a shunt and more than a dozen brain surgeries), epilepsy, and precocious puberty. She gets around by crawling because she is unable to stand or walk without direct support. She is very smart, but has the behavior of your average "terrible two" and she has some sensory issues.
Every day is a struggle to manage her behavior and to keep her happy. We are currently fighting with her school to get her the resources she needs to thrive and learn. She is the only CP child in a room full of Autistic kids, making the environment inappropriate for her. She spends most of her day in what they call the "quiet room", but it is really a storage closet.
Every day is a struggle to manage her behavior and to keep her happy. We are currently fighting with her school to get her the resources she needs to thrive and learn. She is the only CP child in a room full of Autistic kids, making the environment inappropriate for her. She spends most of her day in what they call the "quiet room", but it is really a storage closet.
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My 7 year old Hope was born 12 weeks premature and also had a hemorrhage at birth. She also developed hydrocephalus and has a vp shunt. the cp developed later on, she has seizures and asthma. I think she should have been on a respirator, but they only had her on room air when she was in the NICU. She is in a special needs program and in a classroom with a few other kids, all of them with unique needs inlcuding Autism, but not exclusively autism. I am sorry to hear you are really having struggles with the school. It can be hard sometimes, but keep fighting, find an advocacy group like March of Dimes or Easter Seals if you can to come with you to meetings so you at least have some moral support. There are laws to protect our kiddos but they don't go far enough in my opinion.
Hope is sort of crawling, but she has weakness on the left side of her body so she kind of just goes in circles. She can walk with a walker and she has tons of therapies. She had a lot of sensory issues too, but she has outgrown most of them. I would definitely talk to your school district about providing Lily with some therapy to work on her sensory issues, and putting her in a storage closet just doesn't sound like the most appropriate way to handle things.
I am here for you anytime.0 -
Hi there! I have an almost 4 year old daughter who was full term and the day before I was due something happened...she stopped moving as much. I went into the hospital but they said she was fine. Less than 24 hours later she was an emergency C-section because of the distress she was in. Turns out that she was experiencing a slight reduction of oxygen that last 24 hours and had they taken her out when I went in originally the amount of damage would be minimal if any. Due to the prolonged oxygen reduction she has severe brain damage, developmental delays, CP, cortical visual impairment, and a seizure disorder.
Despite everything, today she "ran" her first kids 1.5 km run....she has only been walking a year now so this was a major feat for me...oh ya, and her too. We were the second-to-last child in, the last being an older boy with CP more profound than hers, but it was amazing...my 5 year old ran the race with her auntie and they waited for us at the end and the four of us crossed the line together....I think this was more emotional for me than the day she took her first step or said her first word!
Today was a good day....tomorrow I will not think about at this moment because we all know that tomorrow is never the same day....
I too am dealing with behaviour issues right now, I just never know with her whether it is the CP, the delays, or the vision impairment, combination of the above, or just her having a bad attitude....this too I deal with day by day....
Where about's are you, Skylark? I am in British Columbia and there are some fantastic resources here who might be able to help you with your schooling issues because it sounds like she isn't even remotely getting the education or support that she needs...0 -
My daughter is 2 with mild CP, she also had hudrocephalus and needed a vp shunt (luckily no revisions so far) My daughter will be going to a public school next year for pre-school, I'm so nervous for the exact reasons you mentioned! I'm seriously thinking of home schooling!0
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I have an almost 2YO with CP. It's pretty mild, afa motor issues go (weakness on one side, and some motor delays) but his speech is really affected, especially his expressive speech - he is pretty much nonverbal. We're hoping that with some intensive ST it will get better, but are trying to be realistic. He also has severe allergies and is tube fed. (He was NG fed, then graduated to PO only, but d/t FTT is now back to NG as a transition to a GT - we're not sure if he's going to get "just" a GT or a Nissen fundoplicaton + GT). The CP really is just a part of his issues -- more of a "symptom" than a final diagnosis.
He is going to be homeschooled at least through Kindergarten -- our public district is not the greatest, and I don't think he'd be able to keep up in the private school my older ones go to. I'm already homeschooling my almost 5YO - he has psych/behavior issues that keep him out of school - so what's one more?0
