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oO.MeaganBermeo.Oo

oO.MeaganBermeo.Oo

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December 10, 2012 I gave birth to my beautiful baby girl who was born extremely early at 22 weeks. She faced many complications. She has Spastic Cerebral Palsy, Deafness, Epilepsy, GTube, and Bilateral Cochlear Implants.

I come here as a hearing parent of a Deaf child. I had her implanted last April and activated in May. It was a tough decision as many of you are against the idea of CIs. I didn't do it to "fix" her but, to improve her quality of life. She will be in a wheelchair and have little to no use of her hands. Although I sign and talk to her I hope she learns to understand sign language and reply back with speech or her capability of making signs.

I am a single parent and work from home to provide her consistent care. She does OT & PT and will soon began speech therapy as she has recently been trying to voice things more often. I wanted her to hear because I wanted to make sure she could voice her opinions and thoughts. I didn't want her to be locked away in a body that she has no control over.

She has AB Neptune Processors in Princess Pink.

ImageUploadedByAllDeaf1397418246.051678.jpg


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Thank you! She means the world to me. She's my only child and probably will be for awhile. I need to find a good husband who will always put her needs before our own.


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The CI opposititon has pretty much died down.......
Where are you located? There are actually two schools that might be able to help you and your daughter.......If only they weren't in MA(which has a very high cost of living) Actually wait........there may be more then two schools, as you can always check into State School Deaf-Blind programs. Also check into Severe Disabilty classrooms and programs. One of the downsides of Deaf Ed is that it's very academic. So kids who are more then moderately multihandicapped can miss out. Severe disability classrooms and programs very often have augmentive and alternative communication built into their curriculum. But then again, those kinds of programs can be a not exact fit for kids who might be a bit more higher functioning.(you didn't mention cognitive functioning levels. I know that some kids can be severely cognitively affected but there are also kids who are severely physically affected but with AAC it turns out they aren't as affected as orgionally thought.
I know your daughter can see, but from what it sounds like she functions a lot like a deaf-blind multihandicapped kid right? Perkins School for the Blind accepts Dhh kids (and does evalutions) who sound a lot like your daughter....It might be a good resource since your daughter is so low incidence....They educate a lot of CHARGE syndrome kids, and your daughter does sound a lot like a "CHARGE Syndrome kid. Perkins - School for Students Who are Deafblind
There is also a Deaf School that educates a lot of kids like your daughter and also educates hearing children who use Sign and Augmentive and Alternative Communication.(AAC) The Children's Center for Communication - Where Communication comes first
Deaf-Blind programs at State Schools might be able to help you....It's just kinda unusual that she can't use her hands....But there are some D-B kids who do use ACC....and of course look into United Cerebal Palsy/severe disability types of schools/resources.
 
Thank you for the information. I still have awhile to look info schooling for her. Thanks for all the information.


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She is very cute. Even your avatar pic of her is adorable! Look at that smile. it makes me feel happy. :D
 
sorry, I was just confused because you said she was born Dec 2012, and then implanted last April (2013) which would be only like 4 months
 
mev426 said:
sorry, I was just confused because you said she was born Dec 2012, and then implanted last April (2013) which would be only like 4 months
Click to expand...

Holy cow! Sorry I missed that. I just got 16 months on a quick glance since they don't implant at 4 months...
 
oO.MeaganBermeo.Oo said:
Thank you for the information. I still have awhile to look info schooling for her. Thanks for all the information.


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Click to expand...

Hopefully you'll be able to move and have those resources!.....My best advice.....(and I hope I'm not stepping on anyone's toes here) Try to keep balanced with your involvement with your daughter......It can be VERY intense raising a medically complex kid......don't be afraid to ask for help or take time out for yourself etc........I know parents of kids who are severely affected and SO many of them seem to think that they can handle raising a child with severe issues alone.....or the burden usually falls on the mom,or parents think the more therapy the better.....
 
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