Any Cerebral Palsy parents out there :)

[essie0828]

Hi ramanie Thanks for the support dear. Conductive Therapy! I'm so glad you brought that up. I had ran upon it in some of my midnight Google travels, lol. It's not widely taught here in the States. The closest facility teaching Conductive Therapy educators is in Michigan and I think that's one of only a few nation wide. I have not met anyone with this degree in my medical travels with DD. I am really hoping to follow this form of education for DD. Lilesmom we were hoping to try to do public school but so far she's not ready. So in the meantime I want to teach her how school really goes. How to move about in a class room, how to get things and put them up, all the everyday skills needed to go to school. We have to figure out an augmented communication program for her to before she is ready. She communicates with gestures a lot. If she wants to go outside she will grab your hand and put it on the door knob. Most everything she wants at home goes like this. Her verbal communication is very delayed. Her mouth just wont work right for her to speak things. So in the meantime we are working on expanding her vocabulary with pictures and getting her fine motor skills in her hands ready to work with a computerized talker. One of those where she strings pictures together to say things. I've often thought about raising DD as a life school of Conductive Therapy. It's our jobs as moms to take all this therapy and figure out a way to use it to teach our kiddos basic life skills.

Lilesmum we try to get DD to sleep in her crib now as she's strong enough to move off her face if she needs to. But she's still in our room and most nights she wakes and gets in our bed. We co slept with her forever hun. We had to, just like Simon she could get stuck and couldn't right herself so I waited until she could support her weight well. I'm thinking she was close to 2 before we were getting her to sleep full nights in her crib. So don't fret it if he's not ready. I know co sleeping with a squiggly baby isn't fun either. We never really slept well with DD in bed, always cautious of her movements and ours.

 

[essie0828]

That's great he's about to start commando crawling. It wasn't long after DD started moving like that when she learned to stand up some and to knee walk. The more he wants to get around the better. We used to get the dog to help DD. She wanted to chase after our little dog so bad, lol. It was great motivation. She would wiggle and kick until she figured out how to move to get the dog. Bless that little dog, she's been a great help. Just keep him moving, it might take some time but he's getting stronger from trying. We do our therapy stuff in the sitting room mostly to. Im thinking about taking it over for her class/ therapy room. We never have any guests except therapists and family anyway. Surely they won't mind visiting in a room with a bright classroom feel to it We need more space.

 

[lilesMom]

Thanks hon.
To be honest I love cuddling him most nts.
Some nts I don't get much sleep though
Those nts I think of the cot :-D
Oh wants our bed back
It does get in the way of other things :-D
But I think Simon isn't ready.
He gets stronger all the time so maybe next summer

I must look up conductive therapy, thanks
All tips,gratefully accepted :-D
Simon has a good few words but he can go long patches and be quiet.
I did the Hanen communication course.
It has helped a bit.
He is saying lots more since.
I think his speech will be a bit delayed but I think and hope he will be ok
Sometimes things can click for them,
Simon can spend ages learning something
And then suddenly he has it.
Hope this happens fir hayley with speech xxx
I'm sure with all ur help it will xxx

 

[essie0828]

Would they still offer you the genetics testing if you asked? It's something I had to think on then go back to. After 2 second trimester miscarriages and the odd coincidence of my cousins baby delivered by the same doc being disabled....I just want to know. We have had limited testing done on the two miscarried but nothing was found. I think that Hayley will be the same. My cousins pregnancy was complicated, my delivery was complicated. We both have other risk factors but I think we will have the test to be sure. If you are thinking on it just ask about it at his next appointment. If your thinking on ttc it might be useful. Some tests take a longtime I have heard. I dunno how it would be over there.

 

[essie0828]

Haha! Nothing like a baby in bed to kill the mood huh? I understand that!

 

[essie0828]

My understanding of Conductive Therapy is that it's basically focused on life skills. Learning to do every day activities. Like bathing, dressing, feeding, communication, school time activities, potty training, learning an occupation, every skill needed for a fulfilled life. Then deconstructing these skills into small baby steps that we teach kiddo. Like feeding, pottying, sitting in class....well first we must be able to sit in a chair to do all these. So we focus on chair sitting until we can try sitting on a potty or sitting up at the table or sitting up at a desk. It has to be very personalized to the childs abilities and disabilities, providing support with aids as needed. It really incorporates every tiny aspect of a lifestyle.

 

[lilesMom]

I think we posted at same time earlier Xx
Um.. We already kinda do conductive therapy in a way so
Eveythung in baby,steps and everything in order
Still will,read up thanks Xx

I'm gonna split our,therapy time between the 2 rooms
More variety for both of us
Might get more time out of him that way.
I'm sure ur visitors wouldn't mind hon.
If they did then they would be people I wouldn't care! Too much about their opinion :-D
Hows yr classroom planning coming.

He is close to commando crawling but no clue how long yet
I'm mean and put stuff just outta reach :-D
But he usually rolls to um
But,any moving is,great,like u say
All strengthen and motivates

 

[lilesMom]

I'm waking him with phone
Must go xxx

 

[essie0828]

Aww poor little guy, hope y'all get some rest, post at anytime your free. Definitely don't wake him to reply to me. I turn my phone off at nap time. Girl you gotta rest

That's exactly right about Conductive Therapy. Here the Occupational Therapists sorta teach it to parents and patients. We've had a brilliant OT teaching us at the rehab hospital for the last year. Sadly we are loosing him but he's moving up to a better position somewhere. We're loosing DDs great speech therapist there as well. Bummer. They are both taking new positions. At the rehab hospital I get to watch them teach from each style of therapy then we model that at home with doing common tasks. Like light switches! Recently taught DD how to work the switches properly and oh my! I've yet to use the toilet without her turning the light off while I'm in there But now she will turn the light off and leave it off when we go out of the bathroom. Well with much pleading from me to quit flicking the switch on and off. Finally she gets it and leaves it alone after she's played with it a bit. But hey thats a life skill. A tiny one but something useful none the less

 

[essie0828]

It sucks having to make them work to get stuff sometimes. I always want to give in to DD and let her do the easy way. But she doesn't learn as well that way I have to keep reminding myself. We still spoil her terribly.

 

[lilesMom]

I chanced it again but hisbreathing is,getting lighter.I'd I go u know why :-D

 

[lilesMom]

That's funny.
I've just started using his hands to turn on and off,the,lights
I figure its very achievable thing for him yo learn to do
He likes the immediate reaction of the light turning on or off.plus it is a life skill

 

[lilesMom]

We just lost our lovely,brilliant slt,as well
Dint even know who,we r getting to replace her a month later
Sucky
Espeacially when our los like them

 

[essie0828]

I don't know who will be replacing our SLP or OT. I hope they are as good at their job as the 2 we're loosing. Oh and one of our PTs is pregnant. Like very round pregnant. At least 5to 6 months along, so she's gonna be leaving soon. That's every therapist kiddo has done well with gone in one big poof. I think she will adjust well but I would be lying if I said I wasn't a little worried. Their last day will be September 5th.

 

[essie0828]

We are also restructuring her at home therapies to include OT. We were just doing speech and pt at home before now. We will meet the new therapist and someone from the school district sept 3.

 

[Ramanie]

Hi
essie0828

You are doing great. Keep it up.. Its a difficult journey but has great rewards. I cannot believe that my son is so improved. I give great thanks for Conductive Therapy.

 

[essie0828]

Thank you Ramanie It's only right to do your best for your babies, that's what us moms are for. If you don't mind me asking, what type of CP does your son have. You mentioned he was in a wheel chair. Are his legs mostly involved?

 

[essie0828]

That's funny.
I've just started using his hands to turn on and off,the,lights
I figure its very achievable thing for him yo learn to do
He likes the immediate reaction of the light turning on or off.plus it is a life skill

It's really fun to watch em play with the switches. It's an excellent tool. I use it now to get her to listen to me. Like "Hayley STOP flicking the light, leave it off." Or to mix it up id tell her to leave it on. She's learned all three of those words, stop, off and on from light switches.

 

[essie0828]

Oh and not to mention she got tons of standing practice from trying to reach them! Love it.

 

[Ramanie]

Hi essie0828,

I do not know what type of CP as he is 28 yrs and therefore at that time exposure for special need education was not so advanced like now. He cannot walk but we try to make him walk on parallel bars with the aid of splinters. He can talk a little and very intelligent. He also was given life skills at the conductive therapy so he can fed himself but needs assistance with dressing himself. As I said before we had to persevere as the sooner you start therapy (i.e Physiotherapy) the better the progress. You are doing great as you are trying to find the best method for your baby. Do not loose hope as the journey will be rewarded. They say in CP the damage is already done and that they can only improove from there with our help.