New to group - question

[Guest guest]

Hi,

I am new to this group - my name is Betsy. I have been getting a lot

of mixed messages about my son, Wiley, who will soon be 2 1/2. He has

only a few words, mama, dada, yeah, and a few sounds for animals.

Through the EIP in the area, I was told he was apraxic. I took him

for an evaluation at Children's Hospital in Boston who believed it was

too early to diagnose him as he isn't really saying anything yet and

is rather young. He is age-appropriate in his receptive skills and at

the 12-15 month level for expressive language. He is also at the

12-15 month level for feeding, as he suffered severe reflux and a

swallowing disorder that caused him to aspirate on thin liquids and

the like up until very recently. He is still on overnight g-tube

feeds that we are working on weaning him from. He is seen at a good

hospital clinic twice a week for 45 minute sessions and attends a

speech playgroup once a week through EIP. He is also involved in 6 OT

sessions a month, one through the EIP which is weekly and one through

a great hospital OT which is bi-weekly. He is characterized as low

muscle tone and has mildly reduced oral muscular tone. Hence he has a

hard time with chewy hard or mixed textures in his mouth. His current

speech therapist is doing very traditional speech therapy with him and

her group also feels it is too early to diagnose apraxia. His feeding

therapist through EIP who is just great feels he suffers from a motor

planning problem and that this accounts for his lack of speech. This

seems like another way to label him apraxic, without saying apraxic.

I'm just a little confused, and worried about him as he really tries

very hard to get words out, and is exhausted during the therapy. I

see him in front of Barney going Ba- Ba - Ba - dee!!! Badee Ba. He

wants so MUCH to say Barney, desparately. So I worry about his

self-esteem. Mainly I joined the group since I'm trying to focus on

this more now that he isn't aspirating or heading off for a nissen or

whatever - and since he so clearly understands everyone and is having

such a hard time getting messages accross which he greatly desires to

do - when I get a complicated request on occasion, the relief and

happiness on his face is so affecting. If anyone has any comments,

please share them. Otherwise, I'll just surf the messages and see if

anything clicks.

Thanks so much for the opportunity to post.

Betsy

[Guest guest]

Thanks so much for the reply. I have the snacks closet as well. After

Wiley got into it the zillionth time and dumped 200 cookies on the floor, my

husband said, why don't you put a safety lock on that? And I was like, ARE

YOU NUTS???? He has about 15 signs but doesn't use them spontaneously - so

I'm learning sign, too, and will use them consistently when I speak with him

to help him use them more consistently too. I actually organized his toys

to help him stay on tasks and not get too distracted by all his possessions

- this has helped there, but I'll get him up to speed on where I've put what

-

I'm also using pictures with him which really opens him up. The Barney

picture already looks pretty tattered. When I leave, he wander s the house

with my husband observing with a picture of me, pointing to it and then to

the door saying Ma ma. How sweet is that? The hard thing about all this is

the stuff in their little heads that we aren't privy to. All those

wonderful observations by 2 year olds of the obvious. Or the bizarrely

poetic - like my friend's daughter who looking at a place on her arm after a

band-aid had been removed said " oh, a bandaid shadow " But then, Wiley has a

million goofy wordless games that compensate pretty well for speech.

Thanks so much for the mail!

Betsy

>From: Rothweiler <kdr@...>

>Reply-

>

>Subject: [ ] Re: New to group - question

>Date: Fri, 12 Apr 2002 21:30:50 -0700

>

>Hi Betsy -

>I read your post about Wiley and it reminded me a lot of my life this time

>last year. My son's self esteem was obviously suffering by his inability

>to

>communicate with me and there were times he got so frustrated he would just

>drop to his knees and bang his head on the floor. What helped us a lot was

>two things. First, I moved a lot of the food in my pantry to the lowest

>shelves that he might want. This way he could go and point to what he

>wanted instead of stand in front of the pantry and grunt while I named

>everything in it trying to figure it out. I also bought clear plastic

>storage bins for his toys with drawers in them which not only got me

>organized, but also allowed him to see what was in the drawers so he could

>find what he wanted instead of wanting a toy but not being able to tell me

>which one. The second thing I did was to teach him some basic signs like

>hungry, thirsty, more etc. This allowed him to be able to communicate his

>basic needs to me which I think helped a lot. You mentioned your sons

>smile

>when you understood a complex request from him. I remember my son signing

>to me that he was thirst and when I said " oh, would you like a drink? " he

>was beaming that he actually told me something (through sign) and that I

>understood. Hope that helps! Good luck!

>

>

>

>

>

>

>

>

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[Guest guest]

Hi Betsy -

I read your post about Wiley and it reminded me a lot of my life this time

last year. My son's self esteem was obviously suffering by his inability to

communicate with me and there were times he got so frustrated he would just

drop to his knees and bang his head on the floor. What helped us a lot was

two things. First, I moved a lot of the food in my pantry to the lowest

shelves that he might want. This way he could go and point to what he

wanted instead of stand in front of the pantry and grunt while I named

everything in it trying to figure it out. I also bought clear plastic

storage bins for his toys with drawers in them which not only got me

organized, but also allowed him to see what was in the drawers so he could

find what he wanted instead of wanting a toy but not being able to tell me

which one. The second thing I did was to teach him some basic signs like

hungry, thirsty, more etc. This allowed him to be able to communicate his

basic needs to me which I think helped a lot. You mentioned your sons smile

when you understood a complex request from him. I remember my son signing

to me that he was thirst and when I said " oh, would you like a drink? " he

was beaming that he actually told me something (through sign) and that I

understood. Hope that helps! Good luck!

[Guest guest]

> I have been sprinkling enzymes on his food for the last month, pep for

> any meats i give him and zyme prime for any carbs. Is this correct?

Sounds okay. No-Fenol would also be helpful for high phenol foods.

>> So

> if i give him a slice of wheat bread, should I just give him the zyme

> prime with it then?

He would need Pep for the gluten in the bread.

>>Would I give him more than usual? I am a little

> confused between zyme prime and peptizyde.

Peptizyde: gluten/casein/soy, helps eliminate viruses

AFP Peptizyde: same as above, for kids who don't tolerate

papain/bromelain

No-Fenol: fruits and other high phenol foods, helps with artificials

for some kids, also helps eliminate yeast by digesting the yeast cell wall

Zyme Prime: proteins, carbs, starches, fats, general digestion of

most foods [HN has papain/bromelain, SCD version with cellulose does not]

> He just started school and so i recently (in last 2 weeks) switched to

> the zyme prime and afp chewables to make it easier for them, and I

> noticed his BM's are more runny and more stinky, so not sure if it's

> because of the switch to chewables or if he just has more yeast or

> what.

It takes 2-3 chewables to make 1 capsule for Pep and ZP.

He might not tolerate the flavors. Try adding No-Fenol, see if that

helps.

Dana