Looking for other parents of children with Down syndrome

Denise Joy

Posts: 46
Karma: 28
Baby: 2

« on: March 11, 2009, 05:06:18 AM »

Hi! I was wondering if there were any other parents of children with Down syndrome who use Little Reader, and if so what has your experience been teaching your child reading?

My son Josiah is 2 1/2. We have been doing reading, math and picture cards for over a year now. The first glimmer of understanding that I received was at 18 months when one day I showed Josiah the word good-bye without saying anything and he began to wave. Moments like that have been few and far between though. I believe that he knows a lot but he doesn't always want to play the game when I ask him to identify between objects.

I have had a recent encouragement when he showed me that he knows the flags of South America. I have been flashing them to him as well as to my 5 year old.

For the most part I need to just input the information and trust that he is receiving it. I look forward to the day when he will readily demonstrate his knowledge, but for now I will just carry on.


	Logged

nhockaday

Forum Moderator

Posts: 4109
Karma: 705
Baby: 1

I'm Gabriel's mommy!

Re: Looking for other parents of children with Down syndrome

« Reply #1 on: March 11, 2009, 05:14:19 AM »

Kmum has a daughter with down syndrome. She has made wonderful progress. You can read more about it here http://forum.brillkids.com/coffee-corner/special-needs-kids/


	Logged

"While we try to teach our children all about life, our children teach us what life is all about."

mas2in

Posts: 39
Karma: 36
Baby: 2

Re: Looking for other parents of children with Down syndrome

« Reply #2 on: March 11, 2009, 08:15:13 AM »

Hang in there!

Our boy Sunny is now 5 years and he is progressing nicely. At first we did not have little reader, but we always read to him. He is still not speaking clearly, but he seems to have good attention span and loves books. He is reading some words. We can give some of the credit to the LR program, but I know one other thing that has helped him a lot is that we don't treat him like a disabled person.

Another helpful thing is that since Sunny was our first child we had no idea that he was different in any way so we just treated him like a normal child. We did not find out until he was one year old.

He is a unique, but typical boy in so many ways. One thing that is different is that if he was given a room full of toys and books, he would choose the books first. Of course we have to remember not every child has the same likes and dislikes. Does he have any particular interests? Really work in those areas.

My advice is continue to give him as much attention and stimulation as possible especially in his areas of interest.


	Logged

kmum

Posts: 648
Karma: 161
Baby: 1

Re: Looking for other parents of children with Down syndrome

« Reply #3 on: April 05, 2009, 10:34:53 PM »

Sorry to be slow to respond & thanks to nhockaday for mentioning me. I've been having computer problems for almost 2 months now - 6 trips to the repair shop & of course it takes a week or so for them to look at it & then something new goes wrong when I get it home - Grr!

It sounds like Josiah is doing great!

My dd who has DS is 21 months. It is hard to judge the extent of her reading, however she definately understands some words. She has recently had an explosion of sign language words & signs over 40 words. This has really allowed me to see her read, because she now signs the words as she reads them. The exciting thing is that as she reads & signs she is now trying to say the words as well so I am noticing a huge increase in her vocal skills also!

I would love to know if her reading skills are transferring to being able to read new words, but I guess I have to be patient for now.

mas2in - I agree with you. We do not treat Kay like she has a disability, other than things like LR & working harder on crawling, walking etc. I have very high expectations for her. I'm curious as to why he was not DX with DS until 1 yr, if you don't mind me asking. Does he have the common trisomy 21?

Are either of you doing any sort of physical program with your kids?

Laura


	Logged

Laura - proud Mom to my new reader with 47 chromosomes! http://downsyndromeupupupandaway.blogspot.com/

Posts: 47
Karma: 6
Baby: 1

Re: Looking for other parents of children with Down syndrome

« Reply #4 on: April 06, 2009, 07:32:02 AM »

Hi,
My son Adam is going to 3yrs this May is a DS child. He is down with a very rare case ....Translocation of chromosome 21. I notice about this during my pregnancy about 7 mths. My husband and i trying to find more info and method for DS child to help him to learn. Since bb, i start to show him flash cards and play signing movie for him. Very luckily, i also able send Adam for the EIP since he 9mths. He learn lots from that center. Adam development is quite well. Now, he able to recognize some simple words. But, he is quite delay in his speech. Until now he still unable to call me "ma ma". These few day, i found a improvement in his speech..... Adam try to speak up some words like ball, book, apple etc when he saw those thing appear in book or tv. For me, i can see those stimulation thru flash cards is really helpful for Adam. (he is sensitive to words that he learn) I hope more mum with DS child can share their experience, teaching method and more here.


	Logged

mas2in

Posts: 39
Karma: 36
Baby: 2

Re: Looking for other parents of children with Down syndrome

« Reply #5 on: April 06, 2009, 08:02:51 PM »

This was our first child and we really had no idea of how fast he should develop. But when he was not able to hold up his own head for a longer period of time than the average child, then I started wondering. But even though I had some suspicions that something was different, I did not do or say anything because I felt others would treat him more like a normal child. Finally, one pediatrician suggested he suspected DS because of the single crease in the palm of the hand. At that time it finally dawned on me that he was right. Since he seemed quite healthy we didn’t feel a need to act quickly. Finally around a year old we had his chromosomes checked which showed the trisomy 21 in 100% of the samples. However since he still showed no signs of any other problems physically other than the low muscle tone, we decided to wait to give him a thorough checkup when we came for a visit to the US which was around 2 years 8 months.

But now knowing what I know about DS, I would have not done it that way at all. We were just blessed that there were not other problems other than his low muscle tone. I can only thank God that we prayed over and over for a healthy child, and I feel that God protected us especially knowing all of the other health problems that a DS child can have.

Another reason DS was not detected was because the doctor did not even give us a hint there was anything wrong. But I can guarantee that if he were born today that we would have known because this hospital does genetic checking for all at birth. Things are really changing here in India.

As for a physical program, we are just working on his interests. At first he was exposed to a lot of physical stimulation, we read to him a lot and showed him a lot of love. By the time he was one he had traveled to a number of places in India from south to north receiving a lot of different stimulations from train travel, to bus travel, riding in rickshaws, etc. In the church everyone would want to hold him and they would say how he is such a bright boy always giving him positive affirmations; they had no idea. And we continued that same positive upbeat attitude towards him, and continued to constantly have books in front of him stimulating his mind.

He loves music and dancing so we had him listen to a lot of music. When we got the thorough checkup in the US, the physical therapist gave us a set of exercises for us to do. Now we continue to have him do daily exercises which he seems to enjoy because he loves mimicking his older sister doing her daily exercise.

Now he likes to walk (He did not walk until 2 years.) and go outdoors and play in the park (Sometimes it seems impossible to get him away.). He still loves books and is reading a little.

His speech is delayed, but his comprehension is quite high. He has always loved books since he was tiny. But as parents we always reading to him and because it was important for us it was important to him. The avatar I have is showing Sunny around 7 months. He has always shown a good attention span. And if given a room of toys and books, he chooses the books over toys.

LR is very helpful as when he goes through the play lists, he tries to mimic each word which is good for his speech. What is nice is when he reads you know what he is saying.

By the way keep up the high expectations and have a positive attitude.