watch this, it's worth it! - you will learn a lot!!!!

iVillage Member
Registered: 12-11-2006
watch this, it's worth it! - you will learn a lot!!!!
11
Sun, 10-02-2011 - 11:47pm

It's not just about the Down Syndrome; it's about development; what may cause the delays and why it's so important to address them early on (as soon as you notice); - it's good to watch these videos in order but if you don't wish to then at least see the video 7 about motor skills; good and clear explanation how different is the muscle tone from muscle strength and how important is to take the child through all the steps of development and not to skip any...

then, please, let me know what you think... has it helped you to see your child potential in a different way? it did it for me - I've been with NACD for a year and a half now and Bob Doman is Anita's evaluator and program designer; I'm still amazed by this organization's dedication and determination to help the parents help their kids;

http://www.youtube.com/user/NACDDOTORG?feature=mhsn#p/c/19ECA40E9DADE2CE

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Avatar for jessthemom
iVillage Member
Registered: 03-26-2003
Thank you Ania! That is a great series of videos. I think they will be a great asset to new parents to the world of Hypotonia. I have met professionals that didn't understand the difference between strength and tone, so it is great to have a resource to clearly define the two. Fortunately we have had fantastic therapists since Madison was 4 moths old who have helped us figure out and understand a lot. I subscribed to the channel, I can't wait to keep learning more!
iVillage Member
Registered: 12-11-2006

Great:) I'm happy to hear you have found it useful:)

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Registered: 08-11-2010
Hi - I did watch a few of the videos including the intoduction, motor skills, and speech ones. I didn't really learn anything I didn't already know. My dd always said that is was incredibly important for her to crawl even if you didn't crawl for long before walking. We currently go to a motor behavior program that is working on the hip flexors/muscles that he mentioned for gait. I guess I am most interested in the cognitive/language improvement. My dd's processing seems really slow and sometimes she doesn't respond at all. I don't know if its sensory related or dyspraxia related. I can't see that traditional therapy model is addressing this. Thank you for sharing and providing the information regarding how it has helped your dd.
iVillage Member
Registered: 12-11-2006

our biggest issue now is also cognitive/language - we work hard to improve the processing and increase the retrieval speed; we see progress and that's encouraging but it's a long road;

I'm glad to hear when somebody learns something new from these videos but it's also great to hear that the things you've heard were no news to you - good you have the knowledge and knowledgeable people in your corner:)

thanks for the reply,

iVillage Member
Registered: 08-11-2010
One more question... how much time do you spend per day doing these activities? Is your daughter in traditional school? Do you maintain outside therapies as well? Thanks!
iVillage Member
Registered: 12-11-2006

sorry for such a late response... have been busy, did not check the board:(

Anita goes to preschool 3xweek 2,5 hrs - I've kept her in preschool (although she is 6) on purpose; for the legalities (Ohio edu law) she has a homeschool status

she goes to OT/SLP co-treatment privately 1 time per week

the work that I do at home with her (nacd program) takes a lot of time and effort but I would not give it up because it works for us well; the program is about 30 activities that last between 1-3 minutes; some have to be done one time daily but some have to be done 2,3 or 4 times in a day; I do majority of work with Anita before lunch and finish the rest later in the day

she also goes to a sport class (currently basketball) 1 time a week

I do work on weekends and have two other children (thankfully they are teens and independent) so I'm busy

I almost do not take care of the house (my husband does majority of the house cleaning, all of the grocery shopping and all the yardwork... but he doesn't do anything with Anita other than playing with her and taking care of her.... but no exercises nor activities - all the educational stuff with Anita is my job)

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Registered: 03-09-2009

I used to be on this board much more and I remember reading all your posts with Anita.

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iVillage Member
Registered: 12-11-2006
Hi Brenda,
of course I remember you too! have you ever check out this school for special needs/learning disabilities that was near you in Canada? was that worth investigation?
Brenda, I'll be happy to write you the list of books that I thought helped me to get a little more idea what's going on with my daughter and what to do about it... I'm still learning every day... it's all so confusing and overwhelming but you, I, everybody, we just have to take it one step at a time... on my last eval with Anita at NACD her evaluator told me "we don't intend to make her average, we intend to take her far beyond that" - and you know... I believe they can....

there is always something we can do.... I just wish there was more help at the beginning; the help that would focus not on giving parents the black scenarios but the kind of help that teach us what to do!

here is the post that inspired me to have an absolutely positive and effective day with Anita tomorrow (I'' copy and paste it from NACD face book):


"Roxane Mignot
Since last month we officially have an NACD graduate in our family. My 6-year-old daughter was born with Williams Syndrome and has been on program for nearly 5 years. We, with the help of NACD, have taught her everything from crawling, to eating, to talking, reading etc. She is now 100% mainstreamed in school, reading at 2nd grade level (she is in kinder), getting straight A's in math and spelling tests (she is an advanced class, too by the way). She fluently speaks French and English, can swim since age 3, plays the piano, practices Kung Fu 3 times a week...and she is the best eater in our household (we have 4 children). This child has ALWAYS exceeded our expectations and continues to do so. Her visual and auditory sequences are literally taking off these days with vusal of 7 and even an 8 ! reverse is a steady 5 or 6. She rocks. Despite our official withdraw from the program, I keep her on her NACD routine at least 1 hour per day after school. I wouldn't have imagined a better scenario even in my wildest dreams...Hang in there, it all pays off eventually. NACD, you are the best !"

when I read it I thought to myself "yes, I can do it, I can do 5 years on the program";

I'll put together the list of materials for you and some info that I came accross and found useful and write another post reply tomorrow or in the next few days:)
(((((((((((hugs to sweet Quinn)))))))))))))))
Ania

and if you want to email me, please do:
agancarz2@yahoo.com
iVillage Member
Registered: 08-11-2010
Ania - I have decided to look into a neurodevelopmental program. Your post has encouraged me and I've since been doing a lot of research. NACD region is not convenient to my area so I will likely go with another organization. I am concerned about having time to implement. My dd is in full time preschool and we drive 1.5 hours r/t for ST (she has apraxia as well). But I will have to adapt.
You definitely have a full plate. Thank you for sharing and for your honesty. Best of luck to you and your family and may Anita continue to progress before your eyes.
iVillage Member
Registered: 12-11-2006

can I suggest two books? both offer lots of info and at-home programs that can be used while setting up your cooperation with an neurodevelopmental organization; both are available in the libraries; I've used the first one to improve Anta's balance and sense of herself in the space and by following the manual program she is a monkey on the monkey bars now;

the second book I'm reading right now and I find it fascinated and going to use to further improve my child global functioning as it makes sense to me (it has the similar approach as NACD but some things are new to me and I'm going to give it a try)

http://www.amazon.com/Teach-Your-Baby-Physically-Superb/dp/0757001920/ref=sr_1_2?s=books&ie=UTF8&qid=1320794156&sr=1-2

http://www.amazon.com/Disconnected-Kids-Groundbreaking-Neurological-Disorders/dp/0399535608/ref=sr_1_1?s=books&ie=UTF8&qid=1320794467&sr=1-1

good luck to you

(((((hugs))))))

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