There's more to it than meets the eye

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

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AnneCanucksFan
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Joined: Fri May 04, 2012 12:24 pm

There's more to it than meets the eye

Postby AnneCanucksFan » Fri May 04, 2012 12:53 pm

Hi folks. I am the mother of a 20 year old who was born with right hemiplegia cerebral palsy. My reason for joining this forum is to give all the parents of youngsters with CP a head's up on a most important piece of info the doctors don't tell us about.
Anxiety.
People with CP are more apt to develop an anxiety disorder than darned near anybody else. I emplore you to take this very seriously. The kids have tight muscles already and the brain is well aware of this. Maybe it is why the kids are prone to develop GAD. Generalized anxiety disorder is debilitating, watch for the signs.

Generalized anxiety disorder symptoms can vary. They can include:

Constant worrying or obsession about small or large concerns
Restlessness and feeling keyed up or on edge
Fatigue
Difficulty concentrating or your mind "going blank"
Irritability
Muscle tension or muscle aches
Trembling, feeling twitchy or being easily startled
Trouble sleeping
Sweating, nausea or diarrhea
Shortness of breath or rapid heartbeat

If I may be so bold as to make a recommendation, I would suggest yoga for you and the child. We were not given this information nor was assistance offered or recommended. Sadly, my daughter will be on medication her whole life. She has cried every day for 19 1/2 years and is terrified whenever I get into a car. When she is out of the house, I have to stay home so she can function without a breakdown while out in public. It's a life sentence.

We took care of the easy stuff when she was very young, like teaching her to use her hands and to walk which she did by the time she was three. Physio and OT would have taken a back burner if only we'd known about the mental issues that were going to arise. I can't stress this enough...relax. Your kid will grow up to be whomever they are meant to be. Don't sabotage your child's future with your grief. Celebrate the child you have, love them and have fun. In the end, they will be much better off. I post these words with all due respect to all the families on the forum.

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LeaciesMum
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Joined: Sun Feb 28, 2010 3:30 am
Location: Melbourne, Australia

Re: There's more to it than meets the eye

Postby LeaciesMum » Tue May 22, 2012 7:40 pm

Thanks for the advice... at the moment my daughter is only 5 (almost 6) and is the happiest little Vegemite I know. But thanks to your post I will keep a close eye on her.

I've never suffered self pity or the 'why us/her'... when Leacie was still very young and I was feeling sorry for her while she was having an OT session and our therapist said to me, "Don't feel sorry for her, she doesn't know she's disabled, only you do. She doesn't know what she's missing out on because she's never been able to do it in the first place. Just treat her as you would one of the other kids." Ever since then I have. We take her limitations into account (she has multi toned quad CP) but she still gets time-out if she's naughty, she has chores and she is expected to clean away her toys. She didn't even really notice she was different to other kids until she started Kindergarten.

We tell her she has CP and her muscles don't work properly and that just means things are going to be a bit more tricky for her to do, but she can do anything she sets her mind to.
* A Strong Mind Can Compensate For A Weak Body *

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KizMac
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Re: There's more to it than meets the eye

Postby KizMac » Thu Aug 30, 2012 3:10 pm

Thank you very much for this post.
My daughter Bree is only 2, but already I can see signs of anxiety and I'm not looking for them.
Bree screams constantly when she is out of the house, out of my arms, if I'm out of sight or if we try to put splints and AFOs on...

Do you have any advice on how to help her?

Of course I want her to achieve as much as is possible, I would love for her to be able to talk, walk, eat etc etc, but I am happy to have a child that just lays there if she is happy and she's not, right now she is a mess :(

I feel like all our progress is going backwards at the moment because she HATES anything that remotely resembles physio... she's only 2... I feel so sorry for any child that is this traumatised by life already :cry:

Bree has Severe Spastic Quad CP so she has A LOT of therapies and unfortunately hospital admissions, there is no doubt in my mind she has anxiety from this experience.

*On a side note, LeaciesMum, do I know you from BubHub (about a year ago)?*
Coffee is a drug. A warm, delicious drug!!