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I'm a part of a couple CP groups and follow several pages by parents about CP, and I tend to see the same questions popping up over and over.
So I thought a post was in order. An easy, one-stop post that answers these questions once and for all.
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Cerebral Palsy is brain damage that affects the signals sent to muscles in different parts of our bodies. (From just one, to all four limbs.) It impacts our ability to balance, our coordination, our strength and our posture.
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Can Cerebral Palsy be cured?
No.
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| [Image: Photo caption reads "Tonia - 11/22/81 - 5 months] |
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Help! My baby with CP is not reaching milestones! Are they okay???
CP is a developmental disability.
That means they will be on their own timetable when achieving milestones.
Some with CP will walk after their second birthday, for example. Others, like me, may be unable to walk without adaptive equipment. Still others may not be able to walk at all.
Grasping, rolling over, talking, sitting, standing and potty training all are included in possible areas you might see delays.
This developmental delay sometimes includes growing (if your baby was a preemie and / or spent a long time in the hospital.) And even teething. My sis and I did not start teething until 14 months. As kids, we lost teeth late. (I didn't start losing my baby teeth until after my seventh birthday.)
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But my baby's doctor said their CP was mild! Why aren't they doing X, Y, Z yet?
When you replace "CP" with "brain damage" perhaps it will make more sense when I say that "mild" brain damage is still brain damage. Your baby still has CP which will still impact them in various ways.
(Also functioning labels stigmatize. Those with more involved CP are often more isolated and spoken over / spoken for. And those with less involved CP are often put under pressure to perform closer to a nondisabled standard, which is not always possible.)
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But should I look into Botox? Surgery? Therapy?
If so, you should also look seriously into Medical Trauma and CP.
In my opinion, surgery and Botox should be a last resort. And therapy should be done with an eye toward what your child wants to learn, and perhaps, pain management.
Kids with CP deserve childhoods.
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How and when can I tell my child they have CP?
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When did you first know you had CP?
I've always known I had CP, but not because of a sit-down conversation anyone had with me. I listened at doctor's appointments. I listened as my classmates were told about me and my CP. And my sister also has CP, so we saw it in each other our whole lives.
But the result of not being told directly and not having CP be an open conversation, I felt a lot of shame around it. It was never brought up around my house growing up, except in a negative context.
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Why is my kid with CP having accidents even though they are potty-trained?
"Holding it" can be difficult for those of us with CP, because it's hard to isolate just those muscles.
With CP -- it can often feel like "all or nothing" in terms of muscle-engagement. So your child may "hold it" but then not be able to move, and when they do move? They may not make it to the bathroom in time.
It also is a common issue, I think, for some of us with CP to not necessarily know exactly when we have to go unless it's super obvious / almost too late.
That said, be patient. Be understanding. Know your child is not being naughty. If they are hiding wet clothes or bedding, it is likely out of shame.
Talk to them calmly. Apologize if necessary. "I'm sorry for losing my temper. I didn't understand, but now I know you're not doing this on purpose. You can always tell me if you need something washed. I'll wash it for you and I won't get mad."
And if they need it, look into pads for incontinence -- even if they are not fully incontinent -- this helps to keep things drier.
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How did you deal with the emotional side of things and feeling like a burden? What did you need from your grown-ups?
As kids, we need to hear that you are happy to help us.
When you say this, make sure your face and voice matches the words you're saying. If you're gruff or impatient, or snap at us. We get an inconsistent message and may still come away from a situation feeling as though we did something wrong.
So, make sure your kid sees your love for them. Talk about a family member or friend they love to help. And then tell them, "It's like that. That's how I feel about you. I always want you with us."
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I really want my kids to have friends. My kid's school has offered to assign them a friend. Isn't this a good thing?
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Are there any books out there that won't make my kid feel like they are the worst for having CP or being disabled?
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