Re: Low Tone/Milestones

[Guest guest]

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Aren't you wise for being only 14 mos into this adventure?? 's

motor issues sound so much like Aubrie. All this talk of low tone etc

reminds me of her infant PT. It was awful-- the only therapy she cried

through. The PT told me that she was careful to note the difference

between " complaining " crying (I don't like this, I'll do it, but you

need to know I hate it) and real upset. When we watched Aubrie closely,

I could tell the difference too. It was awful to force a baby to deal

with something she didn't like -- like being on her tummy. But I also

knew it was important and didn't really hurt her. Kind of like

shampooing now-- she hates it, but it's necessary and doesn't really

hurt her -- even tho it might bother her in a sensory way that I can't

understand (that's another issue).

On " catching up " -- I have let go of that as well. At nearly 7 yrs,

Aubrie is sort of caught up. She can physically do most everything the

other kids can do -- just less agile, slower, less steady...

Intellectually, she's right with them. And advanced in much of her

understanding of the world since she's been through so much more than

other kids. And that cuddle stage-- well, she's still in it! And I

rejoice in that every day. She's so tiny that I can still baby her in

some ways -- but she's smart enough to get that I am babying her cuz

she's " my baby " even though she's a big girl. Her adorable little voice

is amazing to listen to. She wakes up singing so I've been enjoying the

sound of her first thing in the morning for 6 years now. It's

beautiful. Her speech patterns and tiny little voice are so precious

coming out of such a tiny little thing but saying such grown up stuff.

She's a hoot!

I enjoyed hearing about and you're way of coping. You've come a

long way in 14 months!

Michele W

[Guest guest]

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A terrific post! My son Eddie is 5 and still quite far behind.

<<On an emotional note: The idea of him " catching up " left us a long time

ago, and it was really sad for a while. I remember the first time a younger

baby was doing more than him, and it made me feel so hopeless. I also

remember when people first started saying " Really?!? " when I said his age. >>

It really frustrates me when people assume he's much younger than he is, but

I haven't had to face a lot of people asking " what's wrong with him " (a nice

way to put it, don't you think? My sister-in-law asked it just that way before

Eddie was a year old. She wasn't my favorite person before that comment...)

<<We know what his issues are and what may arise in the future, so I just try

and focus on progress, whatever form it takes>>

Sometimes that progress will be immeasurably slow but the people who love you

and him will sometimes see what you don't being with him every day.

<<Once could hold his head up (about 8months?) we got him

an Exersaucer. He still loves it now...>>

Believe it or not, we still give Eddie weight-bearing time in his

(disassembled and modified by my engineer dad) exersaucer. He's not waking

independently

yet, but does well holding hands & he still enjoys marching in place!

Joanne

[Guest guest]

Another thought about low tone, therapies, etc in infancy -- We tried to

gently challenge Aubrie past her sensory obstacles. I mean, she didn't

like to be held and rocked too much, but we did it anyway -- very gently

and quietly -- in a way she could tolerate -- until she built up to

liking it. Of course, when she was having a real problem, when she was

upset and crying about something, she very much needed to be left alone

so we did leave her be even though our inclination was to want to hold

her. So we respected her needs while trying to gently push her

boundaries. We went outside even though she hated the wind and rain.

We had to go to the store so we'd run through the bad weather as quickly

as possible. We'd go to auctions with daddy and , stay as long as

she could manage, then go home early. We didn't force anything, but we

didn't automatically protect her from the things she was averse to.

Does that make sense? It's hard to explain. As I write, it sounds

harsh -- but it wasn't at all. It was just an attitude that she needed

to get past these things in order to live our life with us. So we

encouraged and helped her to get past as much as she could by easing her

into things and not automatically accepting them and then sheltering her.

This morning we had our first snow of the season with lots of wind. She

was so excited! She got dressed and headed outside to wait for the bus

in the snow. She spent 10 minutes out there smiling all the while --

and gave up listening to music which is her rountine and can't usually

be messed with. This is *not* my baby!

Michele W

Aubrie's mom 7 yrs old on Mon CHaRgE and 13 yrs

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[Guest guest]

Ami-

I think there are so many factors in the infant development of our kids

that it's impossible to determine the why's of their delays.

Hospitalizations, feelding issues, low muscle tone, vision... the list

goes on and on. Instead of trying to figure out the why's, our time may

be best spent working on the hows of finding their potential. Sometimes

it's critical to name an obstacle in order to overcome it. Other times,

we can overcome even when we don't have an identity of our obstacle. I

hope that makes sense.

The fact that your little guy is finding his way around the house (even

if in his own unique way) is wonderful. Some CHARGErs haven't found

mobility of any kind at age 13 months.

Michele W

Aubrie's mom 6 yrs CHaRgE and 13 yrs

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