update-cj, & questions- long

[Guest guest]

In a message dated 1/17/04 10:08:59 PM Pacific Standard Time,

austinclan2002@... writes:

> or does he honestly not

> know where he is in space in relation to other objects when he walks

> into the door or table

I am onlytalking from the experiences of my son at that age, I believe what

you said above was correct. My son is now 5 1/2, has motor planning problems,

and was always bumping into things, I mean always. He would trip even when

nothing was in his path, fell off of chairs, nearly knocked out one of his front

teeth. Although I never took notice if it was one side more than the other(I

didn't know enough then beyond thinking he was just careless in his movements)

Since being on Proefa, for two months straight the tripping and falling has

gone completely. However I stopped fish oil to get evals done, so now he is off

them a total of 6 weeks, so all the benefits that had accumulated are going

bit by bit. He fell about 3 times today, fell into a laundry basket, (it was in

the way)cut his lip,. I know gymnastics have helped him tremendously as far

as body in space issue, esp. the trampoline, I think was the best for him. Like

I said this is just what I have seen with my son.

[Guest guest]

Hello all,

Before asking my LONG questions...I just wanted to give a quick

update on CJs progress since straightening out his dosage of ProEFA,

( thanks !) he has had a huge surge in speech! At 19 months, he

had 3 words: " uh-oh " , " ma " , and " um-um " (thank you). He is 23 months

now, and has around 25 words/phrases!! He is also babbling,

singing, and will actually try to imitate our words now! We had

always signed with CJ since he was an infant, but had really stepped

it up when he was diagnosed. He is doing really well with it,and

has about 45 signs now. I have noticed a few new members with little

ones around CJs age, and wanted to let you know how well the EFAs

work! Also, for the new members who were wondering:

CJ gets:SPEECH: 2x/45min through EI, 1x/45min private slp

OT: 1hr/week through EI,

Dev'l specialist: 2x/mo through EI

SIGN LANGUAGE: 1hr/week at a school for the deaf,

plus sign anguage videos at home

Okay, now for a few questions for those who have been down this road

already. I would really appreciate any insight:-)! Thanks to those

who actually read this to the end, LOL!!

1. CJ has hypotonia, and his private SLP, who is NDT certified, sees

definite motor planning issues as well. (His OT is right out of

school, and doesn't see it, but also didn't understand a lot of what

the SLP was talking about at the IFSP review mtg. this week) The

private SLP says that in particular, his abs are weak, rib cage is

high, and his left side comes in late. CJ has been falling A LOT

lately, and he seems to be continually hitting his face/head on the

right side. A few weeks ago, he tripped over the dog and he

actually dented the wood on the door jamb with his forehead- long

story short, no CAT scan, but had to wake him up hourly- he still

has the remnants of that bruise underneath the 4 or 5 others he has

received since. We had a PT eval through EI on Thursday, and the PT

is worried about hemianopsia b/c he seems to fall or walk into

things on the right often,(seriously- it has been almost daily the

last 3 weeks) as well as the fact that he doesn't cross the

midline. The EI PT suggested getting a helmet and an MRI, as well

as taking him for PT privately, b/c he isn't behind enough to

qualify for PT through EI, but she really felt he needs the PT. My

husband does not want CJ to wear a helmet, and his private SLP is

very concerned about the amount of head injuries he has had lately

but feels I should wait and see what Dr. Merola (dev'l pediatrician)

says in 3 weeks. The thing is, CJ has DSI too, and is

hyposensitive. He requires a tremendous amount of vestibular input,

and he also wants to keep up with the older sibs. He is fearless- he

will dive at you from the top of the stairs and assume you will

catch him. His recent injuries haven't been due to that though,

they have just been him walking into doors/tables, falling into a

wall while walking/jumping, etc. Sometimes we have witnessed it

and thought, how on earth could he not see that- which goes back to

the hemianopsia possibility, I guess. But I am wondering, could it

be the fact that he is slow to react and his left side always comes

in late, so it is his right side that falls; or does he honestly not

know where he is in space in relation to other objects when he walks

into the door or table? Of course, being 23 months, all tables are

right at his eye/temple level, so that is where he seems to hit! I

don't want to hover over him, but I don't want him to be seriously

hurt either. Does anyone else have any experience with any of this?

2. A sensory or behavioral issue??? CJ has become really resistant

to dressing in the mornings. His OT suggested rubbing his legs, or

spinning him around, but neither seem to help. It is cold here (PA)

and he still wants to be naked! I don't want to make him

uncomfortable if it is a sensory thing, but am not sure if it is or

not. He seems to be less resistant if I let him stay naked or just

in a diaper for an hour or so in the mornings, but I can't always do

that. Any ideas? (He also says " ow " when I change his diapers).

Once he is dressed, he seems okay, but is really resistant during

the process of getting dressed.

If anyone actually read all the way to the end of this, THANK YOU!!!

I would really appreciate any feedback.

[Guest guest]

visual/spatial ?

My daughter was great at that.....still is. Drinking from a glass, thinks the

table is 3 inches closer than it is. Drops glass on the floor. Played

soccer....goes to kick the ball....kicks 3 inches left of the ball.

Seems she suffers from a visual/spatial disorder. She's now aware, and

compensates for it ..... took a while, but we haven't had a broken glass in over

a year! <smile>

~K

Re: [ ] update-cj, & questions- long

> or does he honestly not

> know where he is in space in relation to other objects when he walks

> into the door or table

I am onlytalking from the experiences of my son at that age, I believe what

you said above was correct. My son is now 5 1/2, has motor planning problems,

and was always bumping into things, I mean always. He would trip even when

nothing was in his path, fell off of chairs, nearly knocked out one of his

front

teeth. Although I never took notice if it was one side more than the other(I

didn't know enough then beyond thinking he was just careless in his movements)

Since being on Proefa, for two months straight the tripping and falling has

gone completely. However I stopped fish oil to get evals done, so now he is

off

them a total of 6 weeks, so all the benefits that had accumulated are going

bit by bit. He fell about 3 times today, fell into a laundry basket, (it was

in

the way)cut his lip,. I know gymnastics have helped him tremendously as far

as body in space issue, esp. the trampoline, I think was the best for him.

Like

I said this is just what I have seen with my son.

[Guest guest]

--

I was kind of thinking along the same lines as Karyn. I'm no expert,

by any means, but I kind of wondered if maybe something was going on

with CJ's eyes too in some capacity. I hadn't thought of a

visual/spatial relationship, but maybe just that his vision wasn't as

clear, like too farsighted or nearsighted in the one eye, or

peripheral was off. It's definitely something to talk to Dr. Merola

about (you KNOW I have a lot of faith in her now) in a few weeks.

Let me know how your visit goes! We don't see her until late March,

although I wish we could see her sooner!

As far as the clothes thing, while I appreciate it possibly being a

DSI thing, it could be just CJ being a little monkey like my guy.

He's gone through stages where he really doesn't want to get dressed

or changed, but I make him, and once he's done he's fine. He still

does that sometimes (this morning, for instance), but some of that is

just little boy stubbornness. I'm not saying to ignore this, but

keep that in mind too. CJ's almost 2, and Drew's a little more than

2 1/2, so it might be just him. ;-)

le (SAHM to Drew, 2.7 apraxia and DSI)

> visual/spatial ?

> My daughter was great at that.....still is. Drinking from a glass,

thinks the table is 3 inches closer than it is. Drops glass on the

floor. Played soccer....goes to kick the ball....kicks 3 inches left

of the ball.

>

> Seems she suffers from a visual/spatial disorder. She's now aware,

and compensates for it ..... took a while, but we haven't had a

broken glass in over a year! <smile>

>

> ~K

> Re: [ ] update-cj, & questions- long

>

> > or does he honestly not

> > know where he is in space in relation to other objects when he

walks

> > into the door or table

>

> I am onlytalking from the experiences of my son at that age, I

believe what

> you said above was correct. My son is now 5 1/2, has motor

planning problems,

> and was always bumping into things, I mean always. He would trip

even when

> nothing was in his path, fell off of chairs, nearly knocked out

one of his front

> teeth. Although I never took notice if it was one side more than

the other(I

> didn't know enough then beyond thinking he was just careless in

his movements)

> Since being on Proefa, for two months straight the tripping and

falling has

> gone completely. However I stopped fish oil to get evals done, so

now he is off

> them a total of 6 weeks, so all the benefits that had accumulated

are going

> bit by bit. He fell about 3 times today, fell into a laundry

basket, (it was in

> the way)cut his lip,. I know gymnastics have helped him

tremendously as far

> as body in space issue, esp. the trampoline, I think was the best

for him. Like

> I said this is just what I have seen with my son.