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Author Topic: Please introduce yourself!  (Read 173365 times)
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kmum
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« on: April 05, 2011, 04:04:36 AM »

Hi everyone, I am so excited that this new board has opened up for Parents of kids with Special Needs!  I thought it would be a good idea for everyone to introduce ourselves.

My name is Laura.  I actually have 4 daughters, but it is my younger two that I talk about on this board & mainly my youngest.  My daughter K who will be 4 years old at the end of May has Down syndrome.  As scary as the words "Down syndrome" may sound to a pregnant mom, I want everyone to know that the reality of having a child with DS is an amazing & wonderful journey - not the scary diagnosis that it sounds like.  My daughter has already taught me so much and I am truly blessed to be her mother.

We started using early reading programs when my dd was about 6 months old, and got more consistant around the time she was 18 months.  She was likely reading much earlier, but started to show us that she new some words shortly before she turned 2.  She has been reading simple stories since she was 3.5 years old & has recently started to be able to use phonics to figure out new words on her own.  It is so neat to go to the library & pick out books for my 3 year old to read!  Early learning has opened up so many new opportunities for her & is already helping to shatter other people's low expectations.

I look forward to getting to know you all!

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Laura - proud Mom to my new reader with 47 chromosomes! http://downsyndromeupupupandaway.blogspot.com/
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« Reply #1 on: April 05, 2011, 06:50:17 AM »

hi....
so great to know that there is a forum for parent with special need to share.
i am a mom with a Down Syndrome boy who turn into 5 yrs. I really agree with Laura that bring up a DS child is an amazing & wonderful journey - not the scary diagnosis that it sounds like!! 
Hope more parents can discuss and share their early teaching experience for their special kids. I think i will be benefit since we all need the support and encouragement from others parents.

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TracyR4
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« Reply #2 on: April 05, 2011, 04:20:45 PM »

Hi, my name is Tracy and I'm mom to four beautiful little girls ages 13,11,7 and 4.

Three out of my four having varying special needs. My 11 and 7yr old have speech difficulties. My 11 yr old suffered from seizures from the time she was 9 months to 3yrs of age. So it set her back with expressive and receptive language skills. She is catching up but has short term memory issues.  My 7yr old had a not so good birth with , cord wrapped around her neck wasn't breathing when she was born. She had a brachial plexius injury which she recovered from. Possibly may have some mild cerebal palsy but nothing to write home about. She is quite , didn't start talking until she was 4.5 but is truely smart as a whip.
My 4yr old was born with VACTERL Assocication ( visit :www.caringbridge.org/visit/margaretreed1 and read her story and visit VACTERL Network.org to understand more about that).
Her problems are all physical in nature. She is smart as a whip as well and being her mom has been truely amazing. I have learned more about the human body than any average mom ever would know! LOL I started in on early education quite late in the game. I just recently really learned more about it last year. Started my daughter on Your Baby Can Read on Dec 31 of 2010 and now in April she is reading at an early 1st grade level already!  She loves to read anything she can get her hands on. I am working with her on math as well as I don't want her to struggle with math either.  We have used Your Baby Can Read, and currently use Monkisee, and YOur Child Can Read and Brillkids to round it all out.

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Tracy
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Marilyn 15
Katie 14
Hannah 10
Maggie 7
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www.thereedfamily-blog.blogspot.com
akalori
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« Reply #3 on: April 06, 2011, 11:51:07 AM »

Hi.  I have 2 kids ( ages 8 and almost 4).  My eldest has multiple issues - he has a learning disability, ADHD, a tic disorder, language recall issues, gross and fine motor deficits.  Sometimes we worry that he might be developing tourette's disorder because he locks himself in the bathroom to make odd noises.  Unlike the typical kid with ADHD, he is usually good at controlling his impulses and is extremely well behaved.  He isn't on any medicine and learning is a challenge for him.  Despite it all, he is an intellectual kid.  He loves science, documentaries, and books.  He is between 1.5 to 2 yrs behind his peers in reading, math, writing, and physical skills.  This forum gives me hope because it has convinced that anything is possible in terms of encouraging brain development.
Lori

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andreasro
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« Reply #4 on: April 06, 2011, 05:13:03 PM »

Hi, I'm Andrea, the mother of A., a 2 years and 9 months old boy. He's diagnosed with congenital hydrocephalus, prefrontal cortex porencephaly, hypogenesis of the corpus callossum and he's having a VC (ventriculo-peritoneal) shunt since he was 6 months old. He had several surgical brain interventions (5 so far) and he's doing just fine since the 3rd one, when the VC shunt was implanted. (The 1st intervention was a ventriculostomy). He needs MRI investigations as the brain is growing normally (maybe also due to the stimulation he gets through EL methods) and his brain may need some help in growing without cerebrospinal liquid restriction (the liquid is in excess still in some of the parts, but things are improving at an incouraging pace).

Although brain injured - seen only with CT or MRI investigations - he's developing as a normal child, with no disabilites so far. He's learning 2 foreign languages with ease, he's talking, laughing, playing with other children. He's sociable, loving and lovable. He amazes us with a lot of stuff.

Andrea

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kellyjoy15
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« Reply #5 on: April 06, 2011, 10:08:14 PM »

Hi!
I am a soon-to-be adoptive mom of a little boy who is 2yrs 10months old.  He is quadriplegic cerebral palsy, seizures, and severe reflux.  He is currently not mobile, eats through a g-tube, and non-verbal.  He also has some cortical visual impairment.  His problems with any kind of motor movement make it difficult to determine his level of cognitive functioning, but he is a great fellow to be around.  He is very social and loves to interact with people.  He doesn't talk, but certainly communicates his like and dislikes with his voice, eye contact, and facial expressions.  We are hoping to help him find his "voice" and express himself, whether it is by talking or some alternative method of communication, like an augmentive communication device.  We are also going to do everything we can to teach him to read, even if his teachers and therapists think we are crazy!  I would LOVE to chat with someone who has a child with similar challenges about their experiences.

Kelly

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baba
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« Reply #6 on: April 14, 2011, 07:35:16 AM »

Hi,

I am blessed with a an angel daughter who is 31/2 yrs old and Dr's diagnosed that she has down syndromme. Dr's told me that my daughter had a condition when I was 4months pregnant. I am I have been using various method to teach her that includes Glenn Doman. She watches YBCR, Barney cd, Actions words from Bumblee Bee, Gogo, Leap Frog. She does not have any medical condition. She is going to preschool 5 days a week 3 hours daily. She has slight speech delay which i am still working with her.

 I try to spend time with her as much as i can when i get back home after work. She has begin reading when she was 2 1/2 yrs old. She is also taking ayurvedic herbal medicine from India which has contributed to her good memory and keeps her energetic whole day. I believe if we can make little effort to spend time and teach our kid, it really helps them. My daughter has improved so much in her speech and vocabulary. Start looking at your child as a normal child, treat them with love and treat them just like any other child and you will see changes in the. I am very grateful to god for the experience he has given me and my husband.
Thank you so much for all your materials in the library which really helps mothers who are working full time. Bless u all!

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« Reply #7 on: April 14, 2011, 11:23:47 AM »

My gorgeous, beautiful daughter has special needs.. She was born with an ADHD. She is 14 years old, and in second year, she goes to a adhd / add boarding schools. She has truly been a wonderful blessing to our family, and just love her to pieces! We went through a terrible time with her. People often tell you special needs children are given to special parents who will make a lovely home for them. For me having him is a blessing and a challenge that I know I can make it. We fought to get our girl into a school in a neighboring authority. Having a special needs child means life is harder but it is also so much richer and a blessing.




« Last Edit: April 15, 2011, 06:36:34 AM by falentruman » Logged
LMsMum
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« Reply #8 on: April 16, 2011, 07:15:17 AM »

Hello,

I am LM's mum. My daughter has got a difficult to pinpoint speech and language/communication disorder. She is significantly delayed in her speech, language and social skills, but is a very bright girl. Professionals cannot give her any specific diagnosis as they say "she has a little bit of everything".

Perhaps time will show; in the meantime, I am not focusing on getting her a label, but trying to do as much as I can to help her learning. She is making a good progress in reading (she is the top student in reading in her Russian school, I am not sure about her English nursery, as they don't do reading there as yet) and math, as well as in playing the piano.

I draw a lot of inspiration from this forum, from parents like yourselves.

« Last Edit: April 16, 2011, 07:18:06 AM by LMsMum » Logged

kmum
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« Reply #9 on: April 16, 2011, 07:32:33 PM »

Thanks for your replies everyone!  It's nice to "meet" all of you! yes

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Laura - proud Mom to my new reader with 47 chromosomes! http://downsyndromeupupupandaway.blogspot.com/
andreasro
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« Reply #10 on: April 17, 2011, 08:04:59 AM »

Nice to be here and learn so much from so many interesting people!
 smile

Andrea


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« Reply #11 on: April 20, 2011, 03:18:45 PM »

Hi Everyone!

My name is Urmila and I am Mom to 2 beautiful children - a 5 year old boy and a 3 year old girl.  My 3 year old DD has been recently diagnosed with a unique chromosomal abnormality (2.1 Mb deletion on 7q22.1).  That is the cause of all the seemingly unrelated physical and cognitive delays and health issues that we've seen in her since birth.   She is the sweetest happiest (and IMO smartest!) little girl on the planet. 

II'm just not the kind of parent who can sit back and "wait and see" when it comes to my children's development, especially my little girl.  I have no idea what the future holds for her, but I am going to do everything in my power to help her reach the sky!  I'm so happy to find a community of parents who are serious about the education of their children who have special needs.  I look forward to getting lots of good ideas here.

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sandypstahl
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« Reply #12 on: April 28, 2011, 09:10:17 PM »

Hi,
I am the the lucky mother of five blessings. My oldest daughter is 18, then 16 yo twin boys, a 12 twelve yo daughter, and a 2yo son. My youngest was diagnosed at birth with Down syndrome. N has been amazing us since the day he was born. We have been using Love and Learning off and on since he was 6 months old. I feel like we need to really get serious about reading now and I have been looking at the Little Reader program. I'm excited to hear how this program is working for other children.

Sandy

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mko
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« Reply #13 on: May 12, 2011, 12:59:15 PM »

Hi All,

I agree that it is great to have a CSN section on the forum. 

I have two bilingual boys the youngest of which is genetically enhanced (i.e. has trisomy 21/ DS).  We use signs from ASL with both English and Japanese.  It works for us. 

We have been enjoying using LR/LM, but was wondering if anyone knew how to adjust the progress markers (green half-circle or green full circle).  The boys are at different places in the curriculum and I was wondering if I could delete the progress for the first semester LM, so I would be able to use it again for my youngest. 

Any ideas?

Thanks

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Mela Bala
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« Reply #14 on: May 12, 2011, 02:32:24 PM »

Hi mko,

You can adjust the progress markers in LR/LM by right clicking on each lesson and then you will be given an option to mark the lesson as played or mark as unplayed.  I think you will have to adjust each lesson individually.

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