RE: Re: Confused a little bit

[Guest guest]

Danny started out with very high tone, then quickly went to very

low/floppy tone as his heart condition worsened. His heart was repaired at 8

months of age, and he gradually got stronger (we started nutrivene at 16

months, and that helped him be healthy for the first time in his life) He walked

at 18 months, ran at around 22 months, and has been on the go since. Strong

kid..good fine and gross motor skills. So even if a kid starts out with really

low tone, that doesn’t necessarily mean that they will always be that

way.

And lots of kids with low tone have other areas of strength.

I used to compare Danny with other kids, and he often came up ‘short’

in some areas…better in others…but when I compare Danny to Danny, I

can see that he is always continuing his development, just at his own pace.

Good enough for me;-) And I didn’t always feel that way. When he

was a baby, I was convinced that he was going to be the next Ds ‘superstar’…able

to leap tall buildings with a single bound, etc;-)…what I found out along

the way is that it really doesn’t matter what he can or can’t do…*he*

is the blessing.

KathyR(mom to Danny, almost 10 and his 6 older sibs)

From:

DownSyndromeInfoExchange [mailto:DownSyndromeInfoExchange ]

On Behalf Of White

Sent: Monday, June 23, 2008 11:32 AM

To: DownSyndromeInfoExchange

Subject: [DownSyndromeInfoExchange] Re: Confused a little bit

Sounds like Umar is acting just like my Gabe

did at that age. One of

the nurse's first comments at birth was " he's supposed to have low

muscle tone, but his is high. " I learned right away that you don't

tell a child what he's " supposed " to do with his extra chromosome!

Gabe was never floppy, in fact he was nonstop motion, kicking,

squirming, wiggling, and of eleven children he was my youngest to

roll over. He hit all of the milestones right on time until he was

about 6-9 months old. Since then he's slowed down just as his peers

have taken off. But, I just keep in mind that he's still

just " supposed " to do what he does, when he does it, and we just

enjoy the experience. Gabe was two in March and his behavior,

speech, and physical development are probably right on track for an

18 month old.

Be careful about comparisons. I had a teenage niece (homeschooled)

who was working on her math in July and I asked why she had to work

through the summer. She said, " Because I'm behind. " I asked

her, " Behind who? " Life is not a competition unless we make it one.

Enjoy your beautiful boy!

--northern Wisconsin

>

> Having read books, websites, and messages on this list I'm left a

tad bit confused. I'm not sure if this is an indication of things to

come, or just something I should thank God for and read no more into

it.

> According to books, websites, and messages on this list a baby with

down syndrome should be a bit floppy. Like if I lie Umar down on his

back his limbs sort of fall to his side.. ect.

> I've had nothing of the sort from him, he is extremely active and

it surprises his dr and physical therapist. We have had an issue with

him preferring to look to the right instead of straight up. Not that

he can't simply he doesn't want to. He is on time with milestones for

a just turned three month old. He holds his head up, although still a

bit wobbly to be expected at his age. Will hold his head up for long

period of time while on his stomach and no support from me. He

doesn't keep still, his legs are active and not he brings them

together, in fact I'm waiting for him to run away any day now (just

like my first son) he is very in tune to his surroundings. Will

slowly move when laying on his back on the floor. Can roll from

stomach to his back when he wants to. Doesn't sleep much at all

during the day (I can barely get a good twenty minutes from this boy)

found his hands and is quite amused. Is beginning to reach out for

toys, is eating cereal with a spoon. He is talking to me and gets

very active when I speak to him. Will even demand my attention when

he feels I'm over looking him (I'm in trouble with this part)

>

> So when I mean spot on for milestones he is just that. I'm waiting

for what I'm reading.. should I take this to be an indication of

something, at least his physical abilities? Or should I just expect

that this can change at any minute.

> According to the Drs here, he doesn't have mosaic down syndrome. Of

course how they test we have doubts but don't know what we should

seek to have tested. I don't doubt he has DS I mean I can see some of

the physical features, small ears and sort of low, small hands and

limbs in relation to his body. His cute big toe which is farther

apart than should be. So the physical features I see.. but physical

abilities remind me of all of my other children none of which have

DS.