Re: upset once again

[Guest guest]

I have had those moments too, where I think people are staring at my son,

sometimes they are. He has PDD NOS and Apraxia, we had one neighbor kid ask if

he was shy and why didn't he talk. I know a lot of times people look at him

because he is so cute. I have been there, feeling agitated, nervous, afraid

my son will do something to cause people to look at him and then they will

judge, etc. Listen, your child is a gift. I know how hard it is to not get

upset, when that neighbor kid asked that I felt like crying. But my son, is a

good boy, and smart, just because he isn't very verbal yet, doesn't mean

those other kids are better than him, or smarter. It is a slow process of

acceptance and trying to get the most fun out of the time you have with your

child,

I cannot say just ignore everyone else and focus on your child, because

sometimes I cannot do that either. When you child grows his mind also grows and

he or she will surprise you with many gifts. Then you will have looked back

and thought I wish I could have just appreciated the good things about my

child, and had some fun. I know it is heartbreaking to have to go through

this,

just be good to yourself and your family and try to just relax as much as

possible. Sometimes a good cry helps. You are not alone. Jen

**************Get the scoop on last night's hottest shows and the live music

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[Guest guest]

My secondborn a daughter didn't learn to ride a bike until she was 9

1/2. Most children learn around 4 or 5. Now that she is 10 1/2 and

can ride it's no big deal like it was when she was 9 and couldn't

ride a bike. She is neurotypical.

I think your son got a lot out of it from reading your post!

You might try a bandana instead of a bib for example to help with the

drool. This way the instructor can help mop it up since your son is

not near you. You might try to teach your son to wipe his mouth too

if he can. Mine at 5 will use a napkin when he drools in speech

therapy.

>

> I haven't been reading in awhile-vacations, etc., so I don't really

> know what has been discussed lately but I had to write because I

just

> came form ny 2 year old's first gym class (like gymnastics- moomy

and

> me) I thought it would be agreat idea because he can't verbally

> communicate and loves to be active so it sounded great.. but it

> wasn't. I drove home in tears( behind my sunglasses so the kids

> wouldn't see) I almost broke down IN the gym. I had to really

fight

> to keep it in. Let me explain. I am about 3 months into his eval

> and getting speech 2x a week (I was told that I was lucky to get

that

> much even though he had two words at 24 months). Anyway, we have

> been to two ped nuerologists one says yes to apraxia the other says

> he won't diagnosis it but says he agrees that he should be treated

as

> such until he's older and syptome either appear or diminish.

Anyway,

> I have two appontments waiting for dev. peds, and luckily an

> appointment with Dr. Agin in Ny- can't wait until Sept for that

one!

> I hope the pieces of the puzzle come together. Anyway, I'm

> rambling. back to the gym. I have been anxiously watching my son

to

> see if more motor issues come up- so far I only notice that he

can't

> smell or jump. But today at the gym, I realized that he can't do a

> lot of other physical things that the other kids were doing. The

> leader was very kind trying to help thomas who was having a blast!

I

> was mortified by his constant severe drooling- I didn't know if i

> shold wipe it up or ignore it- he followed instructions, followed

the

> group, seperated form me during " kids time " and other tyhan the

> drooling and lack of physical skills did great. But I was so

> distressed that he has obviously more issues and even though I knew

> he probably would, I still ost it. I felt like evryone was staring

> at him and wondering what was wrong with him. It was awful. And I

> felt awful for feeling awful. This is my baby and why shoould I

care

> what others think? ANd I thought I ws past all of this sorry for

> myself stage? Thanks for ketting me vent. I could go on, but I

> won't.

>

[Guest guest]

I think all of us have been there. But, I will quote something

someone said that has always resignated with me. " Comparing your

children to other children is like a slow death. " I know it is hard

not to compare. I constantly remind myself not to do it either. But,

even " typically " devleoping children develop skills at different

times and rates. If your son is having a wonderful time at the gym

class, then that's the most important thing. I used to take my son to

Gymboree until all of my extra money got eaten up in private therapy

costs. He loved it, but the difference between my son and the others

was certainly clear. One thing that used to frustrate me was when

was supposed to be crawling through a tunnel and he would stop

in the middle and lay on his back.

>

> I haven't been reading in awhile-vacations, etc., so I don't really

> know what has been discussed lately but I had to write because I

just

> came form ny 2 year old's first gym class (like gymnastics- moomy

and

> me) I thought it would be agreat idea because he can't verbally

> communicate and loves to be active so it sounded great.. but it

> wasn't. I drove home in tears( behind my sunglasses so the kids

> wouldn't see) I almost broke down IN the gym. I had to really

fight

> to keep it in. Let me explain. I am about 3 months into his eval

> and getting speech 2x a week (I was told that I was lucky to get

that

> much even though he had two words at 24 months). Anyway, we have

> been to two ped nuerologists one says yes to apraxia the other says

> he won't diagnosis it but says he agrees that he should be treated

as

> such until he's older and syptome either appear or diminish.

Anyway,

> I have two appontments waiting for dev. peds, and luckily an

> appointment with Dr. Agin in Ny- can't wait until Sept for that

one!

> I hope the pieces of the puzzle come together. Anyway, I'm

> rambling. back to the gym. I have been anxiously watching my son

to

> see if more motor issues come up- so far I only notice that he

can't

> smell or jump. But today at the gym, I realized that he can't do a

> lot of other physical things that the other kids were doing. The

> leader was very kind trying to help thomas who was having a blast!

I

> was mortified by his constant severe drooling- I didn't know if i

> shold wipe it up or ignore it- he followed instructions, followed

the

> group, seperated form me during " kids time " and other tyhan the

> drooling and lack of physical skills did great. But I was so

> distressed that he has obviously more issues and even though I knew

> he probably would, I still ost it. I felt like evryone was staring

> at him and wondering what was wrong with him. It was awful. And I

> felt awful for feeling awful. This is my baby and why shoould I

care

> what others think? ANd I thought I ws past all of this sorry for

> myself stage? Thanks for ketting me vent. I could go on, but I

> won't.

>

[Guest guest]

All normal feelings. You are doing all the right things to help him

get on track and keep reading the boards. Don't beat yourself up for

feeling shocked, embarrased, etc. Thank goodness you were there to

see it. Take a deep breath and keep fighting.

>

> I haven't been reading in awhile-vacations, etc., so I don't really

> know what has been discussed lately but I had to write because I

just

> came form ny 2 year old's first gym class (like gymnastics- moomy

and

> me) I thought it would be agreat idea because he can't verbally

> communicate and loves to be active so it sounded great.. but it

> wasn't. I drove home in tears( behind my sunglasses so the kids

> wouldn't see) I almost broke down IN the gym. I had to really

fight

> to keep it in. Let me explain. I am about 3 months into his eval

> and getting speech 2x a week (I was told that I was lucky to get

that

> much even though he had two words at 24 months). Anyway, we have

> been to two ped nuerologists one says yes to apraxia the other says

> he won't diagnosis it but says he agrees that he should be treated

as

> such until he's older and syptome either appear or diminish.

Anyway,

> I have two appontments waiting for dev. peds, and luckily an

> appointment with Dr. Agin in Ny- can't wait until Sept for that

one!

> I hope the pieces of the puzzle come together. Anyway, I'm

> rambling. back to the gym. I have been anxiously watching my son

to

> see if more motor issues come up- so far I only notice that he

can't

> smell or jump. But today at the gym, I realized that he can't do a

> lot of other physical things that the other kids were doing. The

> leader was very kind trying to help thomas who was having a blast!

I

> was mortified by his constant severe drooling- I didn't know if i

> shold wipe it up or ignore it- he followed instructions, followed

the

> group, seperated form me during " kids time " and other tyhan the

> drooling and lack of physical skills did great. But I was so

> distressed that he has obviously more issues and even though I knew

> he probably would, I still ost it. I felt like evryone was staring

> at him and wondering what was wrong with him. It was awful. And I

> felt awful for feeling awful. This is my baby and why shoould I

care

> what others think? ANd I thought I ws past all of this sorry for

> myself stage? Thanks for ketting me vent. I could go on, but I

> won't.

>

[Guest guest]

Dear Lulusmom,

First of all..... Breathe. Nice deep breaths. This is a hard road and a hard

realization but you have through it and now know..... something is wrong. GOOD

FOR YOU!!! You were not blinded by false pride, you saw that your son needs

help.

Nextly, I give you full permission to HATE the dyspraxia, the pdd-nos, the ASD,

the gross motor delay or whatever IT is that you are seeing. Remember that IT

is not your child and the key is to try to separate IT (those symptoms) from

your child so that he can go on to develop normally. Don't feel badly for

feeling embaressed about the delay..... we have all been there (many times)

believe me.

The key is that you are seeing this young and that you are doing something about

it in a proactive manner. Last year Colleen's Charlie was really struggling and

then she really got on it and through everything she had at it....... and now

she has Charlie back. This can happen..... or it may take longer for the child

to recover. The key is that you get educated in all of the different therapy

'worlds'...... ie. biomedical, diet therapies, neurodevelopmental therapy, etc.

out there and then try to bring about recovery to your child using all of them.

Lastly, I urge you NOT to quit this class. For others this class may be a fun

time with mom but for your child it is therapy. He needs it more then they

do..... about a 1,000 times more and you have far more right to be there......

your child has a right to help..... and gymnastics is just the ticket for him.

So go back..... overcome the embarresment and do that class!

If you can, remember some of the stuff you do in class and do it with your

son...... everyday if you can..... and really work his vestibular system.

Sounds to me that his ears may be compromised as he is having gross motor

problems and speech problems and is drooling. Producing too much saliva? You

might want to give a trial elimination with milk free diet...... or what they

call casien free diet. A lot of our kids who go on to become dyspraxic have

issues with digesting the casien in milk if you remove all milk products (that

includes white breads or any other item that includes casien so you must read

labels) from your sons diet for about 3 weeks, then add it back in a 'big' way

(lots of dairy) and see if he is affected by it. If he is, you'll know either

immediately or within a day or two..... bad bowel movements, really poor

balance, drooling or behaviour will be nasty...... those types of things will

'tell' you. Milk free has really helped a lot of families and it is not so hard

to accomplish.

Do some reading, buy some good books ie. by Bock, McCandless

are two authors that you can start with. While our kids are not ASD, a lot of

the medicine directed to the ASD kids applies to our kids. Actually for my son,

he profiles medically just as an ASD kid would.

Then..... I want you to go scoop up your son and love him all you can. You can

separate him from whatever is happening but it is going to take nerves of steel

and everything you've got. You have time since your son is so young but there

is no time to waste either since the more developmental milestones your child

gets behind in, the more work you have to do to catch him up.

Janice

Mother of Mark, 13

[sPAM][ ] upset once again

I haven't been reading in awhile-vacations, etc., so I don't really

know what has been discussed lately but I had to write because I just

came form ny 2 year old's first gym class (like gymnastics- moomy and

me) I thought it would be agreat idea because he can't verbally

communicate and loves to be active so it sounded great.. but it

wasn't. I drove home in tears( behind my sunglasses so the kids

wouldn't see) I almost broke down IN the gym. I had to really fight

to keep it in. Let me explain. I am about 3 months into his eval

and getting speech 2x a week (I was told that I was lucky to get that

much even though he had two words at 24 months). Anyway, we have

been to two ped nuerologists one says yes to apraxia the other says

he won't diagnosis it but says he agrees that he should be treated as

such until he's older and syptome either appear or diminish. Anyway,

I have two appontments waiting for dev. peds, and luckily an

appointment with Dr. Agin in Ny- can't wait until Sept for that one!

I hope the pieces of the puzzle come together. Anyway, I'm

rambling. back to the gym. I have been anxiously watching my son to

see if more motor issues come up- so far I only notice that he can't

smell or jump. But today at the gym, I realized that he can't do a

lot of other physical things that the other kids were doing. The

leader was very kind trying to help thomas who was having a blast! I

was mortified by his constant severe drooling- I didn't know if i

shold wipe it up or ignore it- he followed instructions, followed the

group, seperated form me during " kids time " and other tyhan the

drooling and lack of physical skills did great. But I was so

distressed that he has obviously more issues and even though I knew

he probably would, I still ost it. I felt like evryone was staring

at him and wondering what was wrong with him. It was awful. And I

felt awful for feeling awful. This is my baby and why shoould I care

what others think? ANd I thought I ws past all of this sorry for

myself stage? Thanks for ketting me vent. I could go on, but I

won't.

[Guest guest]

can speak to you as a big sister? I was where you were...not

just with one child but with two and I know exactly how you feel

right now. For me I'm now down the road from you 10 years later (!)

but back when Tanner was 2 everyone 'else' thought he was just

a " late talker " and that I was worrying too much -but in my gut I

knew there was more. I looked at your original message here from 2

months ago (I have that below) and like me it appears that your

mother instinct was noticing things -but most others looked at you

as " just a worrier " Trust me -people when they see something " wrong "

don't hesitate to ask you " what's wrong with him? "

http://cherab.org/information/familiesrelate/whatswrong.html

The good news is that if there was some major neurological impairment

suspected outside of apraxia out of the neurologists you've taken him

to so far something would have been searched for or diagnosed. With

my son Tanner he was suspected of a possible genetic disorder and was

put through all kinds of testing back then which was scary -but all

came out normal. Back then most of our kids were put through more

aggressive genetic testing and almost zero showed anything.

We all know we are not supposed to compare but how can we not? It

must be harder for those with twins and there are a number of them in

this group. Suzi in this group has two girls that are both apraxic -

one more severe than the other (aren't they tweenies now?!) and some

have twins where one is apraxic and learning how to say " hi " and the

other is advanced in all areas " and learning to speak French as his

second language " (like Mae Concannon who used to be our New Member

Chairperson when we met in person still back in 2000...and last I saw

Mae and the twins was at Disney a year or so ago and both boys are

doing well and the differences are less obvious!)

With apraxia even with fish oils the progress is accelerated but it's

never as fast as " normal " and that's frustrating more for us than our

kids. The best thing to do is keep a journal -or start posting more

often to a group like this which in effect is your journal- because

it's hard for us at times to see the progress -but you'll see it by

looking back in your " journal "

We have as a group many strategies for drooling which at 2 years old

(again) is more of an issue to us as parents than to our child or the

other 2 year olds. Even though yes there are neurological or

physiological reasons for drooling, you first want to rule out

the " normal " reasons for drooling such as (from Dr. Sears)

Health

Ask Dr. Sears: Too Old to Drool?

By Dr. Sears, Parenting

Q. My 2-year-old drools constantly, just the way he did when he was

teething. What could be the cause?

A. Some toddlers and preschoolers produce more saliva than others,

and that can lead to drooling because the ability to swallow often

isn't developed enough in many children this age. Or your child may

be cutting his 2-year molars, which are his last four baby teeth.

Excess saliva can be a nuisance -- you'll probably want to change

your toddler's wet shirts several times a day. And it can cause such

problems as gagging and coughing when it drips down his throat,

interfering with his ability to speak clearly. To keep drooling in

check and minimize its effects:

Have your son take frequent sips of water throughout the day to help

develop his swallowing ability.

To prevent skin irritation, gently wipe away excess drool with

lukewarm water and pat (don't rub) dry.

Lubricate the area around your child's mouth and chin with a

protective emollient, such as petroleum jelly.

Place an absorbent cotton diaper under his chin or beneath the sheets

while he sleeps to help soak up the drool during the night.

Once your child's swallowing mechanism matures fully and his molars

come in, the drooling should stop. But in the meantime, if you're

concerned, mention it to his pediatrician at the next well-child

checkup. In rare cases, there may be a physical reason behind your

child's problem, such as large tonsils that interfere with his

ability to swallow properly.

http://www.parenting.com/article/Toddler/Health/Ask-Dr.-Sears-Too-Old-to-Drool

Even if it is an oral motor problem

http://www.cherab.org/information/familiesrelate/oralapraxiageng.html

I can tell you that my one son (who was not apraxic but was a late

talker too) had horrible drooling from crushed nerves due to a

traumatic delivery -but with therapies he hasn't drooled ever or at

all since even before he started kindergarten -I'd have to check the

archives for when!! As far as motor planning delays -as the one

neurologist pointed out some by the book professionals do not believe

it's possible to diagnose apraxia in a 2 year old. They stick to

the classic definitions written about apraxia when it was rare and

for whatever reason disregard that the apraxia of today which is on

the rise and not hard to any find at any school near anyone (so much

easier to say what it is today vs. speculate from dusty old books

about a rare disorder!) is multi faceted and presents like a

syndrome.

Point being you are a wise mommy and by being aggressive in seeking

answers you are getting a full year head start on many of us that

didn't get that diagnosis and appropriate therapies until 3! Today

with appropriate therapy and the correct formula and dosage of fish

oils (and now with vitamin E) many 2 year olds are progressing so

quickly that they are unrecognizable from their peers by the time

they are three. Which of course raises the question- do we have the

therapeutic treatment down -or are the kids being misdiagnosed? I

say we have the treatment down!!! No question!!! Have you read here

the " new member archive 101 on everything from apraxia to fish oils

and E I post from time to time? If not I can send that again.

I was in tears about both of my boys back when they were your child's

age -but have to say I cried more about my son Dakota because he did

have severe head trauma and the neurologists (which like you we took

him to many) were concerned as well about his development and due to

the severity of his injuries one said " no doctor can tell you right

now whether his delays are permanent or not " I can't say enough

about the importance of early intervention and continuing to do as

you are -exposing your child to mommy and me classes and everything

else that is multisensory.

Perhaps because Dakota came through so much -and because ignorance is

bliss and quite frankly the traditionalist " experts " on apraxia

didn't know about what I was seeing in my son -all that was known

was " verbal apraxia " classic signs and my family and friends, my

husband (!) his pediatrician and people on the street thought Tanner

was " just a late talker " Like you I had that gut there was more to it

but didn't get the diagnosis until almost 3!

Update -My apraxic son Tanner who just turned 12 mid June came up to

me the other night and started hugging me and saying that he was

thinking about a book he read in school about the holocaust and was

scared that anyone would try to separate him from me and the rest of

his family the way they did to the kids then. And yes he was able to

express that clearly -not just in words -but in feeling. But you

know what? -the greatest moment in that was during our silence when

the two of us just hugged each other tightly. Today Tanner calls his

friends himself to get together, checks the web for what movies are

playing and at what times, reads books on his own without me bugging

him and talks about them with me, and loves to play football. He's

a " normal " 12 year old and you want to know what else I learned from

him? Even though he isn't 100% normal in his speech or sensory

issues- he loves the way he is and doesn't want to change. Here's

Tanner talking today on the Talking Page

http://www.debtsmart.net/talk/tanner.html

And here's his story (not updated to most recent that I just shared)

http://cherab.org/information/familiesrelate/letter.html

And Dakota's story

http://latetalker.com/information/familiesrelate/workandfamily.html

And here is an email where I share about the 'time' I cried about

Tanner as again after Dakota -it would take a lot to make me cry.

There is SO MUCH HOPE!!! Don't forget that!!

" I just received an email from a parent who has a child that is

about 18 months old, is nonverbal, and was recently diagnosed with

oral apraxia. She stated that she was a " blubbering idiot " because

she cried, and I sent her this response, which may help some of you

as well.

I remember that I went to a huge fair for " special needs children "

that was a really wonderful and fun event for all the children, even

the " normal " brothers and sisters that were there. I remember having

a great time and then, all of a sudden it hit me that my son was

invited there, like many of these other children, because he

was " special needs. " All of a sudden it hit me, not that I didn't

know before, but up until then those words never meant that much, I

guess.

I stood there, holding a hamburger for Dakota and a hotdog for

Tanner, and I looked at Tanner who was smiling... and I started to

tear. My baby is " special needs. " I knew I could have lost it, so I

focused on something else and acted like I had something in my eye.

We didn't ask for this when we decided to be parents; this is an

added surprise. It doesn't mean that it's bad, it's just not what

most people go through.

Believe me I know what it's like to go from " he's just a late

talker, but man this kid is SO smart, just look at him! " and

believing he is completely normal, to finding out a day later that...

He is not talking because has a severe neurologically based speech

disorder which is called all different names which can mean

different things to different people since the medical and speech

professionals and the world can't agree on just one name so it's

called apraxia or dyspraxia or oral or verbal apraxia or oral motor

disorder or motor planning disorder or phonological motor planning

disorder but no matter which name you call it most of the world is

still ignorant to it but if I don't find out what he needs for

appropriate therapy through insurance and school when it comes to

speech and occupational and physical therapy as well as appropriate

ways to educate him he may never learn to talk, and in addition he

always had " soft " neurological signs like hypotonia and sensory

integration that up until yesterday I didn't even know existed and

nobody not even his pediatrician ever knew he had and it took a

neurologist and a developmental pediatrician to point these " soft "

neurological signs out to us. "

http://cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

It was so overwhelming -but not anymore. There is a bright side to

apraxia.

(also, have you read The Late Talker?)

http://www.speech-express.com/late.talker.html

Here's your first message to our group:

My son is 25 months and was just evaluated for speech services. I had

suspected a problem before he was a year- was told " your just a

worrier " by far too many people, had him " screened at around 15

months- he didn't qualify and was told that I probably wouldn't be

calling EI again- wrong! I always suspected apraxia because of a very

random magazine article I read and it sounded just like my baby. I

investigated and found more ties to my son. Anyway, now he qualified

for speech 2x a week for 45 but I an still looking for a diagnosis and

some type of info about what the law is in regards to amount of

services allowed when and if he is finally diagnosid formally. Any

ideas? I live on long island, ny

erin

=====

[Guest guest]

http://www.gfcfdiet.com/

Here's a link to the gluten free, casein free diet. While it did not

get my son talking (yet...we've been on this since April), he does

have more sounds, no more burping, less gas, no bloating, better

receptive language.

Many kids have been reported to stop drooling once their diet was

changed. Specifically with the removal of casein. If you decide to do

this, be careful, casein (and gluten) are everywhere... in

everything. You really have to become a strict label reader. By the

way, it's much easier to implement this diet change than it seems.

Try not to be too intimidated by it.

Good luck,

>

> I haven't been reading in awhile-vacations, etc., so I don't really

> know what has been discussed lately but I had to write because I

just

> came form ny 2 year old's first gym class (like gymnastics- moomy

and

> me) I thought it would be agreat idea because he can't verbally

> communicate and loves to be active so it sounded great.. but it

> wasn't. I drove home in tears( behind my sunglasses so the kids

> wouldn't see) I almost broke down IN the gym. I had to really

fight

> to keep it in. Let me explain. I am about 3 months into his eval

> and getting speech 2x a week (I was told that I was lucky to get

that

> much even though he had two words at 24 months). Anyway, we have

> been to two ped nuerologists one says yes to apraxia the other says

> he won't diagnosis it but says he agrees that he should be treated

as

> such until he's older and syptome either appear or diminish.

Anyway,

> I have two appontments waiting for dev. peds, and luckily an

> appointment with Dr. Agin in Ny- can't wait until Sept for that

one!

> I hope the pieces of the puzzle come together. Anyway, I'm

> rambling. back to the gym. I have been anxiously watching my son

to

> see if more motor issues come up- so far I only notice that he

can't

> smell or jump. But today at the gym, I realized that he can't do a

> lot of other physical things that the other kids were doing. The

> leader was very kind trying to help thomas who was having a blast!

I

> was mortified by his constant severe drooling- I didn't know if i

> shold wipe it up or ignore it- he followed instructions, followed

the

> group, seperated form me during " kids time " and other tyhan the

> drooling and lack of physical skills did great. But I was so

> distressed that he has obviously more issues and even though I knew

> he probably would, I still ost it. I felt like evryone was staring

> at him and wondering what was wrong with him. It was awful. And I

> felt awful for feeling awful. This is my baby and why shoould I

care

> what others think? ANd I thought I ws past all of this sorry for

> myself stage? Thanks for ketting me vent. I could go on, but I

> won't.

>

[Guest guest]

Hi again ,

Just wanted to remind you that there are reasons for drooling to

be " normal " in a 2 year old so you don't want to go to extremes such

as restrictive diets until you know. If none of the SLPs know why

which most will - for sure Dr. Agin will! If there is something oral

motor going on there are specific therapies and strategies that are

proven effective and I have archives on this to help.

For now just keep doing what you are doing by getting all the

evaluations so you know what you are dealing with if anything. You

are on the right track!

=====

[Guest guest]

To everyone who took the time to write-

thank you- I have been reading a nd posting a bit on here for a bit

but I always think about what I write or don't write at all- this

time i just let it go. I'm really glad that I did. It really helped

me to read what you all wrote and I took it all in.

, thank you soo much- yes i have read the book- I took it out of

the library and will keep it until my book comes in that I

purchased. It was insightful and more helpful than i thought it

would be. Right now I feel as though we are in a limbo because I am

really waiting for my early sept appointment with Dr. Agin. I am

putting all my proverbial eggs in one basket-which is against my

nature but all my research has pointed me to her. I am taking all of

these " opinions " and " guesses " and using them to get what i need -

more services. But everything is sooo slow. The nuero is taking his

sweet time writing a report that states my son needs more services

because EI is insisting on it even though they KNOw that he has

diagnosed apraxia and that he scored in the 1st percentile on the

Kauffman Praxis test. SO, He clearly has issues that need to be

adressed. Now, I want a PT eval and may take him privatley if he

doesn't qualify but scores low. I feel like I take one step foward

and two steps back. I would like to go to a third nuero to see what

he/she has to say, but finding a qualified one that can take a new

patient has been quite a challenge. So many have 18 month waiting

lists!! Who can wait that long? ANyway this is soo long, I guess i'm

on a role. - you may have created a monster by telling me to

write more!

As to your idea about diet- I will be waiting becasuse he loves his

food- doesn't seem to have any other digestive issues and clearly his

drooling is oral motor- he ha( but could be more than that too) he

has no idea about where his tongue is in his mouth- but he is

learning- can go side to side finally! He also does have enlarged

tonsils- just was told by SLP a week ago. Hmmm a trip back to the

ENT is on the way. thanks again- did I forget anything

>

> can speak to you as a big sister? I was where you were...not

> just with one child but with two and I know exactly how you feel

> right now. For me I'm now down the road from you 10 years later (!)

> but back when Tanner was 2 everyone 'else' thought he was just

> a " late talker " and that I was worrying too much -but in my gut I

> knew there was more. I looked at your original message here from 2

> months ago (I have that below) and like me it appears that your

> mother instinct was noticing things -but most others looked at you

> as " just a worrier " Trust me -people when they see something " wrong "

> don't hesitate to ask you " what's wrong with him? "

> http://cherab.org/information/familiesrelate/whatswrong.html

>

> The good news is that if there was some major neurological impairment

> suspected outside of apraxia out of the neurologists you've taken him

> to so far something would have been searched for or diagnosed. With

> my son Tanner he was suspected of a possible genetic disorder and was

> put through all kinds of testing back then which was scary -but all

> came out normal. Back then most of our kids were put through more

> aggressive genetic testing and almost zero showed anything.

>

> We all know we are not supposed to compare but how can we not? It

> must be harder for those with twins and there are a number of them in

> this group. Suzi in this group has two girls that are both apraxic -

> one more severe than the other (aren't they tweenies now?!) and some

> have twins where one is apraxic and learning how to say " hi " and the

> other is advanced in all areas " and learning to speak French as his

> second language " (like Mae Concannon who used to be our New Member

> Chairperson when we met in person still back in 2000...and last I saw

> Mae and the twins was at Disney a year or so ago and both boys are

> doing well and the differences are less obvious!)

>

> With apraxia even with fish oils the progress is accelerated but it's

> never as fast as " normal " and that's frustrating more for us than our

> kids. The best thing to do is keep a journal -or start posting more

> often to a group like this which in effect is your journal- because

> it's hard for us at times to see the progress -but you'll see it by

> looking back in your " journal "

>

> We have as a group many strategies for drooling which at 2 years old

> (again) is more of an issue to us as parents than to our child or the

> other 2 year olds. Even though yes there are neurological or

> physiological reasons for drooling, you first want to rule out

> the " normal " reasons for drooling such as (from Dr. Sears)

>

> Health

> Ask Dr. Sears: Too Old to Drool?

> By Dr. Sears, Parenting

>

> Q. My 2-year-old drools constantly, just the way he did when he was

> teething. What could be the cause?

>

> A. Some toddlers and preschoolers produce more saliva than others,

> and that can lead to drooling because the ability to swallow often

> isn't developed enough in many children this age. Or your child may

> be cutting his 2-year molars, which are his last four baby teeth.

> Excess saliva can be a nuisance -- you'll probably want to change

> your toddler's wet shirts several times a day. And it can cause such

> problems as gagging and coughing when it drips down his throat,

> interfering with his ability to speak clearly. To keep drooling in

> check and minimize its effects:

>

> Have your son take frequent sips of water throughout the day to help

> develop his swallowing ability.

>

> To prevent skin irritation, gently wipe away excess drool with

> lukewarm water and pat (don't rub) dry.

>

> Lubricate the area around your child's mouth and chin with a

> protective emollient, such as petroleum jelly.

>

> Place an absorbent cotton diaper under his chin or beneath the sheets

> while he sleeps to help soak up the drool during the night.

>

> Once your child's swallowing mechanism matures fully and his molars

> come in, the drooling should stop. But in the meantime, if you're

> concerned, mention it to his pediatrician at the next well-child

> checkup. In rare cases, there may be a physical reason behind your

> child's problem, such as large tonsils that interfere with his

> ability to swallow properly.

> http://www.parenting.com/article/Toddler/Health/Ask-Dr.-Sears-Too-Old-to-Drool

>

> Even if it is an oral motor problem

> http://www.cherab.org/information/familiesrelate/oralapraxiageng.html

> I can tell you that my one son (who was not apraxic but was a late

> talker too) had horrible drooling from crushed nerves due to a

> traumatic delivery -but with therapies he hasn't drooled ever or at

> all since even before he started kindergarten -I'd have to check the

> archives for when!! As far as motor planning delays -as the one

> neurologist pointed out some by the book professionals do not believe

> it's possible to diagnose apraxia in a 2 year old. They stick to

> the classic definitions written about apraxia when it was rare and

> for whatever reason disregard that the apraxia of today which is on

> the rise and not hard to any find at any school near anyone (so much

> easier to say what it is today vs. speculate from dusty old books

> about a rare disorder!) is multi faceted and presents like a

> syndrome.

>

> Point being you are a wise mommy and by being aggressive in seeking

> answers you are getting a full year head start on many of us that

> didn't get that diagnosis and appropriate therapies until 3! Today

> with appropriate therapy and the correct formula and dosage of fish

> oils (and now with vitamin E) many 2 year olds are progressing so

> quickly that they are unrecognizable from their peers by the time

> they are three. Which of course raises the question- do we have the

> therapeutic treatment down -or are the kids being misdiagnosed? I

> say we have the treatment down!!! No question!!! Have you read here

> the " new member archive 101 on everything from apraxia to fish oils

> and E I post from time to time? If not I can send that again.

>

> I was in tears about both of my boys back when they were your child's

> age -but have to say I cried more about my son Dakota because he did

> have severe head trauma and the neurologists (which like you we took

> him to many) were concerned as well about his development and due to

> the severity of his injuries one said " no doctor can tell you right

> now whether his delays are permanent or not " I can't say enough

> about the importance of early intervention and continuing to do as

> you are -exposing your child to mommy and me classes and everything

> else that is multisensory.

>

> Perhaps because Dakota came through so much -and because ignorance is

> bliss and quite frankly the traditionalist " experts " on apraxia

> didn't know about what I was seeing in my son -all that was known

> was " verbal apraxia " classic signs and my family and friends, my

> husband (!) his pediatrician and people on the street thought Tanner

> was " just a late talker " Like you I had that gut there was more to it

> but didn't get the diagnosis until almost 3!

>

> Update -My apraxic son Tanner who just turned 12 mid June came up to

> me the other night and started hugging me and saying that he was

> thinking about a book he read in school about the holocaust and was

> scared that anyone would try to separate him from me and the rest of

> his family the way they did to the kids then. And yes he was able to

> express that clearly -not just in words -but in feeling. But you

> know what? -the greatest moment in that was during our silence when

> the two of us just hugged each other tightly. Today Tanner calls his

> friends himself to get together, checks the web for what movies are

> playing and at what times, reads books on his own without me bugging

> him and talks about them with me, and loves to play football. He's

> a " normal " 12 year old and you want to know what else I learned from

> him? Even though he isn't 100% normal in his speech or sensory

> issues- he loves the way he is and doesn't want to change. Here's

> Tanner talking today on the Talking Page

> http://www.debtsmart.net/talk/tanner.html

>

> And here's his story (not updated to most recent that I just shared)

> http://cherab.org/information/familiesrelate/letter.html

> And Dakota's story

> http://latetalker.com/information/familiesrelate/workandfamily.html

>

> And here is an email where I share about the 'time' I cried about

> Tanner as again after Dakota -it would take a lot to make me cry.

> There is SO MUCH HOPE!!! Don't forget that!!

>

> " I just received an email from a parent who has a child that is

> about 18 months old, is nonverbal, and was recently diagnosed with

> oral apraxia. She stated that she was a " blubbering idiot " because

> she cried, and I sent her this response, which may help some of you

> as well.

>

> I remember that I went to a huge fair for " special needs children "

> that was a really wonderful and fun event for all the children, even

> the " normal " brothers and sisters that were there. I remember having

> a great time and then, all of a sudden it hit me that my son was

> invited there, like many of these other children, because he

> was " special needs. " All of a sudden it hit me, not that I didn't

> know before, but up until then those words never meant that much, I

> guess.

>

> I stood there, holding a hamburger for Dakota and a hotdog for

> Tanner, and I looked at Tanner who was smiling... and I started to

> tear. My baby is " special needs. " I knew I could have lost it, so I

> focused on something else and acted like I had something in my eye.

>

> We didn't ask for this when we decided to be parents; this is an

> added surprise. It doesn't mean that it's bad, it's just not what

> most people go through.

>

> Believe me I know what it's like to go from " he's just a late

> talker, but man this kid is SO smart, just look at him! " and

> believing he is completely normal, to finding out a day later that...

>

> He is not talking because has a severe neurologically based speech

> disorder which is called all different names which can mean

> different things to different people since the medical and speech

> professionals and the world can't agree on just one name so it's

> called apraxia or dyspraxia or oral or verbal apraxia or oral motor

> disorder or motor planning disorder or phonological motor planning

> disorder but no matter which name you call it most of the world is

> still ignorant to it but if I don't find out what he needs for

> appropriate therapy through insurance and school when it comes to

> speech and occupational and physical therapy as well as appropriate

> ways to educate him he may never learn to talk, and in addition he

> always had " soft " neurological signs like hypotonia and sensory

> integration that up until yesterday I didn't even know existed and

> nobody not even his pediatrician ever knew he had and it took a

> neurologist and a developmental pediatrician to point these " soft "

> neurological signs out to us. "

> http://cherab.org/information/speechlanguage/parentfriendlysoftsigns.html

>

> It was so overwhelming -but not anymore. There is a bright side to

> apraxia.

> (also, have you read The Late Talker?)

> http://www.speech-express.com/late.talker.html

>

> Here's your first message to our group:

>

> My son is 25 months and was just evaluated for speech services. I had

> suspected a problem before he was a year- was told " your just a

> worrier " by far too many people, had him " screened at around 15

> months- he didn't qualify and was told that I probably wouldn't be

> calling EI again- wrong! I always suspected apraxia because of a very

> random magazine article I read and it sounded just like my baby. I

> investigated and found more ties to my son. Anyway, now he qualified

> for speech 2x a week for 45 but I an still looking for a diagnosis and

> some type of info about what the law is in regards to amount of

> services allowed when and if he is finally diagnosid formally. Any

> ideas? I live on long island, ny

> erin

>

>

> =====

>

[Guest guest]

Oh my goodness, one thing that comes through clear is that you are

blaming yourself. Please do not do that. You did not cause this to

happen to your child and you have a lot of great things in play to

get to the bottom of things. Until you see your docs, etc. please

don't pull him out of that gym class. Your son and all our kids need

to be in an environment of cooperation where they are having fun. At

this age they need to be in a peer-related place sadly so you can see

the differences, report what you see to the docs, and get some help.

My son was the kid who stuck out at music class bigtime. Everyone was

looking at him and pitying me which was wierd. Once we got the right

help in play things got so much better. He just finished that class

in May, to return in Sept. One of the moms in the class came up to me

and said (she said this knowingly as she has an affected kid who was

misdiagnosed with autism until he got to the right ND

pediatrician) " Wow, how about that . You just don't see

turnarounds like that everyday. " Others had many positives to say as

well along with the teacher who could not contain her excitement. Had

I not stuck it out I'd have only seen the bad. You are an awesome

mommy and you can do this and so can he. There is a road out for all

of these kids in my opinion. It leads to a better place. They will

not be typical but extraordinary. Hang tough, feel supported, and go

move mountains for your boy. On a practical note please take a look

at that article I posted in the " Metabolic Peekaboo " thread. If you

cannot find it I will dig it up. It may help you get some good

testing with the docs.

[Guest guest]

We did do this diet and it did help my son as part of a whole program.

After much trial and error one of the best cookbooks I found was Mother

Essential for implementation of this diet. It helps tell you why you'd

do certain things and not others and gives you good and healthy

recipes.

To the poster who said no words yet, please consider " the formula " that

works for most here. Also, and I will post more on this later, but one

of the things that helped my son greatly was a simple change in

toothpaste. Bodycare by vitaminne shoppe helped greatly (theory on why

later) but we saw tongue movement, less choking on thin liquid and less

facial sensitivity. We are currently using one by Nature's gate, simply

because the store was out of body care, and I think I like the new one

better.

[Guest guest]

I'm with Liz on this.....sticking it out.....if you can--of course. You may be

very pleasantly surprised at the end of it all. I also know how you feel.....I

REALLY DO!! I had the same thing, same type of feelings with my son and his

playgroup. We meet several times a week at a neighborhood park for a playgroup.

The kids are from the neighborhood. We live in a very nice neighborhood, so

the children come from pretty advantaged backgrounds.....and most of them are

there with their high priced nannies.....My kid stuck out like a SORE THUMB -- I

have stories upon stories and I was heartbroken most of the time. I wanted to

quit every week, it seemed.

NOW, my kid is a totally different kid! With addressing his allergies, changing

his diet, supplementing his diet, therapy -- and me extending the therapy to

'at home practice' etc.....he's getting better. AND, now the OTHER kids are

beginning to get diagnosed with 'this' and 'that'.....SO, now, this

neurotypical playgroup has 5 out 7 boys with a diagnosis.....and one girl with

severe digestive issues. As my son begins to appear more neurotypical, many of

the others are beginning to appear less typical.

Hang in there!! As you move forward, it will get better.

[Guest guest]

To the group- thanks again. I feel better now. Just to update- i did

sign him up for the class even BEFORE I wrote that post. I wouldn't

compromise my kids because of my own feelings. But anyway, what did

end up happening is that the class i " tried " was his age, but the

class time I scheduled him for turned out to be a younger group. So,

he blends in much better and now the whole class is learning the

skills that he is rather than him learning the basic and the others

going way beyond. I can see that the others will most likely learn

quicker, but thomas is having so much fun and I even relaxed in this

class! I also spoke with EI coordinator and she is sending me a form

to fill out (more forms again) to set up a PT eval. So, I am moving

foward again and I am only wondering when my next breakdown will be!

erin

[Guest guest]

Notthat we ever want any of this to happen but there are strange gifts

in this. Were it not for your son I suspect a lot of those other kids

would have been delayed in getting help at best.

[Guest guest]

Viva la mommy! Whenever it is we are here:)