Re: Slightly discouraged ... Advice?

[Guest guest]

Don't blame yourself. It's easy enough to say -but it's harder to

accept and believe. As parents we always wonder " what if?... " But

the truth is that nobody knows for 100% sure what caused a child's

oral apraxia or any other of the multifaceted diagnosis we are

seeing today. I can tell you for example that any type of apraxia

in children was so extremely rare just years ago -lack of oxygen or

not -that it wasn't even considered a " real " diagnosis by many SLPs

even!! As we've talked about on previous messages -it's probably a

combination of factors, and probably environmentally triggered which

translates to not your fault as to why there is such a huge rise in

children like yours.

You ask: Why doesn't your son want you to help? He does. But even

though it's perfectly normal to feel what you are feeling, children

can sense when we are upset and stressed, and therapy with a

preschool child should be done in a casual and fun way, in a way

that the child doesn't even know that you are " helping " even.

Find ways to reduce your own frustration -and your child's too.

Talk to others going through the same thing. Read Chicken Soup For

the Soul books while taking a hot bubble bath. Get a baby sitter

and go for a massage -or to the movies -or just to walk around the

mall. Try to find things to make 'you' happy. Find things that

your 2 year old can excel in that don't involve speech. What about

arts and crafts or dance or gymboree classes?

I'll never forget one grandfather at one of our in person meetings

told the group that the best sound he ever heard in his entire life

was the sound of his apraxic grandson laughing. He said that a

child that can't yet talk -but who can laugh out loud just gave him

chills and so much hope. Think about it -isn't that true?

Probably a sound better than that -would be the two of you laughing

together.

Do you observe how the therapist is working with your son and try to

imitate her? Probably better yet would be to speak with your

child's SLP and let her give you " homework " There are also a ton of

suggestions in The Late Talker on how to help your child at home

with issues like your sons.

Having a late talker is even more frustrating than other more

serious impairments in some ways due to lack of acknowledgment by

some professionals and the media and the mixed signals we receive

from the public when we hear anything at all. When a child doesn't

speak up till the age of two -around your son's age -you are

hearing " just give him time " while starting to also hear at the same

time " what's wrong with him? " It's enough to drive anyone nuts -

sometimes you just have to find the humor in it.

Below are some archived messages to show you are not alone!

From: " kiddietalk " <kiddietalk@...>

Date: Tue Apr 29, 2003 1:13 pm

Subject: Re: Feeling alone here in Colorado

Hi Kris and welcome!

Just the fact that you are searching and searching on various

grouplists for support on how to help your child shows what a loving

mother you are!

What type of therapies specifically is Chase receiving and do they

appear to be beneficial? Are they one on one? Is he responding to

the oral motor therapy for the feeding issues? I'm sure that our

advisor Sara CCC SLP may have some suggestions too!

We all feel alone when we hear " your child has... " from the doctor.

After the initial shock -it's because most of us look around us and

don't know anyone else going through what we or our child is. The

Internet is amazing and changes all of that for us. Today we all

have each other to share with, cry or laugh with, learn from, teach

or support, even if our child has a rare disorder. Today there are

many parents in this group who can relate to what you are going

though. In fact there are some MDs who now view gastrointestinal

abnormalities as part of the autistic spectrum. (and some that

don't) At least today with a click of the mouse we can read and

understand both sides. I can't imagine what it was like for parents

before -even though I was there, as a baby.

My mom felt alone after I was born. I was born with celiac disease

which almost killed me, like GERD another gastrointestinal

condition. Back then the MDs didn't know that I was born with

celiac disease even though my brother was born with celiac two years

before me. Back then celiac was considered " rare " -now it's known

celiac disease does run in families. More than once after I was

born I was rushed to the hospital malnourished from severe

vomiting. Fortunately for my mom, her sister has her PhD in nursing

and knew right away that I probably had celiac disease just like my

older brother -which is what I was later also diagnosed

with. My

mom was told that if she had one more child born with celiac disease

that she would go into the Guinness Book of World Records -celiac

was considered that rare. Celiac disease was not rare -just like

apraxia, people just didn't know the symptoms so some children were

misdiagnosed -and because various treatments weren't known either -

some

died.

I could show you pictures of me where even though I

was on a special diet that saved me -I looked like one of those

starving Unicef children during my sick times. I was very sick -in

and out of the hospital. Imagine the guilt of some parents who were

blamed for starving their baby to death back then. My mom said

people used to look at her like she was a mean parent in keeping me

(this rail thin child) from eating so many different foods.

Probably doesn't happen as much today thanks to the Internet. Just

like then -some things we accept as " fact " today will be laughed at

tomorrow as we learn more as the things that were laughed at

yesterday will be viewed as fact today (or tomorrow -fish oil)

Try not to feel so bad about what you are going through -or your

child. We all have amazing abilities to heal. I have two children

that were both considered special needs -one from birth trauma -one

after fevers at 11 months old -and both doing really great today

after years of therapy.

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

I can tell you as a child who grew up after being described

as " sickly " as an infant that I'm a very happy person today, don't

have horrible memories of my childhood (other than one time in the

hospital) -and have always been described as happy go lucky -and

rarely am I ever sick today. I was told as sick as I was back

then -I rarely cried -today I only cry watching Kodak commercials -

or movies like Steel Magnolias. Dakota and Tanner are both very

happy boys too. I did cry when Dakota and Tanner were diagnosed

however -and more than once after as I learned to deal with it.

I never let Dakota or Tanner see me cry when their conditions got to

me. I don't believe most parents appreciate how much our children

understand when there is talk in front of the child about

their " condition " as if they weren't there. I remember my mom crying

at the hospital when I was just a baby and couldn't talk. (then

again I remember things most people forget -even times as a baby -

some credit that to the fact I almost died more than once?) My mom

told me before she would leave me in the hospital she would pick me

up crying and hugging me tightly and she would repeat over and

over " Please don't die , please don't die " Back then parents

were not allowed to stay in the hospital overnight like today.

My mom was ahead of the times -and with my aunt having her doctorate

in nursing -once out of the hospital -my brother and I were put on a

strict diet of " no wheat - no sugar - no oil " which at that time was

not considered part of " medical treatment " . I posted here how I

used to want to walk into candy stores and bakeries just to smell

the air. I eat whatever I want today -and have no symptoms anymore

if I eat sugar or wheat. However with oil get horrible cramping

stomach aches if I eat more than a few potatoes chips or fried

foods -and yet can't believe I didn't know about EFAs before a few

years ago -they are amazing.

As everyone else assured you -you are not alone!...well in Colorado

you may be more alone than you would be in other states -but due to

the Internet - " friendship is just a click of the mouse away " as it

says in The Late Talker.

I just posted how Sallie Bernard moved to Colorado after living in

NJ (Apraxiaville) for so many years and how " strange " it feels not

to be surrounded by other families of apraxic and autistic

children.

Here is a quick comparison:

Colorado

Population 4,417,714, land area 103,718 square miles with 41.5

people per square mile.

New Jersey

Population 8,484,431, land area 7,417 square miles with 1,134.4

people per square mile.

If you once again compare stats -Colorado has stayed " fairly "

consistent in numbers for speech and language impaired

classification when you compare to states with dramatic surges like

NJ

Colorado

1996-1997 School Year

12-17 years old

speech and language impaired 2,052 (MR -1,555 / Autistic -36)

6-11 years old

speech and language impaired 8,803 (MR 1,191- Autistic -134 )

1999-2000 School Year

12-17 years old

speech and language impaired 2,572 (MR -1,644/ Autistic -94)

6-11 years old

speech and language impaired 9,999 (MR 1,248- Autistic -243 )

And since I have been doing this -to compare the

pharmaceutical/biotechnology industry in Colorado (since chemical

industry has the most toxic emissions -and it's know that toxins do

effect neurological function)

" The biotechnology industry in Colorado has grown from 38 companies

in 1996 to nearly 60 today, employing over 3,900 workers. "

http://www.denvergov.org/admin/template3/forms/Biotech%20Brochure%

20new.doc

And NJ

" New Jersey houses 110 biotechnology companies, making it the fourth-

largest biotechnology

center in the nation. The New Jersey pharmaceutical and medical

technology industry supports 140,000 jobs in New Jersey "

(from the archives)

It's true our children can acquire many labels outside of " late

talker " which can at first overwhelm us, however the good news is

that you will be better equipped at learning how to best help our

child. Yes apraxia and dyspraxia can mean the same thing in the

US -in other countries dyspraxia is used to describe the motor

planning disorder of the body, where some of these children also

have verbal apraxia as well. Of course if you look at verbal

apraxia -many of these children have apraxia in various parts of the

body as well. (wait...didn't I just say that?) Saying apraxia

and/or dyspraxia (?)can drive you nuts. That's why in the book The

Late Talker we decided to just call it " apraxia " And thanks Kim for

recommending The Late Talker book for insurance. It will help with

school, therapy, medical, frustrations, and to show you that you are

not alone as well.

BTW -you may want to explore diet (just like my mom did) for your

child. I wasn't allowed any wheat -or sugar at all as a baby. Talk

to your child's doctor about the GFCF diet for example -I hated it

as a

child

but today there are so many more options than (lets say sixteen)

years ago. Also please talk to your doctor about EFA

supplementation too.

Here is just one article on EFAs in treating various disorders:

" Similarly, arthritis, Crohn's disease, ulcerative colitis and lupus

erythematosis are autoimmune diseases characterized by a high level

of IL-1 and the proinflammatory leukotriene LTB(4) produced by omega-

6 fatty acids. There have been a number of clinical trials assessing

the benefits of dietary supplementation with fish oils in several

inflammatory and autoimmune diseases in humans, including rheumatoid

arthritis, Crohn's disease, ulcerative colitis, psoriasis, lupus

erythematosus, multiple sclerosis and migraine headaches. Many of

the placebo-controlled trials of fish oil in chronic inflammatory

diseases reveal significant benefit, including decreased disease

activity and a lowered use of anti-inflammatory drugs "

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=12480795 & dopt=Abstract

" Although more study is needed for all of the following, supplements

or specific food ingredients that may prove to be helpful for the

treatment of GERD symptoms or prevention of its complications

include

Bromelain...Gamma Linolenic Acid (GLA)...Selenium " (please click on

the following link from the University of land Medicine to read

in full)

http://www.umm.edu/altmed/ConsConditions/GastroesophagealRefluxDiseas

ecc.html

Here are some resources for GERD which you probably already have but

just in case:

Guidelines Summary on Pediatric GERD

http://www.cdhnf.org/openbinfile.php?

app=pdf & subfold=pdf & name=GERD_8_pg_brochure_031103.pdf

NASPGHAN strives to improve the care of infants, children and

adolescents with digestive disorders by promoting advances in

clinical care, research and education. Pediatric gastroenterologists

specialize in the care of children with chronic abdominal pain,

diarrhea, constipation, vomiting, bleeding from the GI tract,

inflammatory bowel disease, liver diseases, diseases of the

pancreas, poor weight gain and nutritional problems. Pediatric

gastroenterologists specialize in gastroesophageal reflux (GER),

peptic ulcers, H. pylori, celiac disease, Crohn's disease,

ulcerative colitis, Hirschsprung's disease, cyclic vomiting, polyps,

gallstones, hepatitis, biliary atresia, jaundice, pancreatitis,

lactose malabsorption, failure to thrive and other common and rare

disorders. Most pediatric gastroenterologists perform endoscopy,

colonoscopy, esophageal pH probe studies, esophageal and rectal

manometry and liver biopsies

http://www.naspghan.org/.

The mission of the North American Society for Pediatric

Gastroenterology, Hepatology, and Nutrition is to be a world leader

in advancing the science and clinical practice of Pediatric

Gastroenterology, Hepatology and Nutrition in health and disease.

The membership of NASPGHAN consists of more than 800 pediatric

gastroenterologists, predominantly in 46 states, the District of

Columbia, Puerto Rico and 8 provinces in Canada.

http://www.cdhnf.org/MedProfessional.asp

And just one other bit of advice since my son Dakota also had

gagging and feeding (and breathing) problems his first years -don't

buy a

new

couch

yet.

Hope this brings you one more friendly voice to show you

" you are not alone " !

=====

[Guest guest]

Audra

Hang in there..you will see improvment, it just takes time. It seems

like you are getting him the services he needs.

This may not be at all applicable, but my daughter had the same

issues with her tongue. She couldn't lift it - stick it out - move

it etc.. Her tongue was always protruding a bit & she was not aware

of it. Her slp suggested we look into having her frenum clipped. We

did & almost right aways she had tongue mobility. With that

procedure & lots of oral moror therapy, her tongue moves a mile a

minute & she can now lick food from her lip & side of her mouth.

Just a thought & maybe something to look into.

> I apologize if I seem to whine a lot. I just find myself confused

> quite a bit.

>

> I had 2 abdominal surgeries (bowel obstructions) while I carried

my

> son and they believe he may have suffered a loss of oxygen to the

> brain and it resulted in Oral Apraxia.

>

> Kellen, my 2-YO, has trouble lifting his tongue, licking his lips

and

> moving his tongue from side to side. He now recognizes that he

has

> trouble with his tongue and I notice that he will try to stick it

and

> move it and realizes that he can't. When I try to assist him, he

> becomes upset and rebellious and yells " no! " Has anyone had a

child

> who behaved like this, but then cooperated with the SLP? He will

> begin 1-hr of both Speech and OT session 3X a week, next week.

How

> long will it take to see improvement? I just feel a bit

discouraged

> about the help the can provide him with his condition and

attitude.

>

> Please excuse my post if it seems whiney or ignorant. I am just a

> bit worried and could use a little encouragement.

>

> Thanks

> Audra--mom to 2-YO Kellen, Oral Apraxia and lacks fin motor skills

[Guest guest]

Thanks for the suggestions, . I will try to relax a bit. It's

just bothering me that it's bothering him. I guess I want a quick

fix and there isn't one ...

> Don't blame yourself. It's easy enough to say -but it's harder to

> accept and believe. As parents we always wonder " what if?... " But

> the truth is that nobody knows for 100% sure what caused a child's

> oral apraxia or any other of the multifaceted diagnosis we are

> seeing today. I can tell you for example that any type of apraxia

> in children was so extremely rare just years ago -lack of oxygen or

> not -that it wasn't even considered a " real " diagnosis by many SLPs

> even!! As we've talked about on previous messages -it's probably a

> combination of factors, and probably environmentally triggered

which

> translates to not your fault as to why there is such a huge rise in

> children like yours.

>

> You ask: Why doesn't your son want you to help? He does. But even

> though it's perfectly normal to feel what you are feeling, children

> can sense when we are upset and stressed, and therapy with a

> preschool child should be done in a casual and fun way, in a way

> that the child doesn't even know that you are " helping " even.

>

> Find ways to reduce your own frustration -and your child's too.

> Talk to others going through the same thing. Read Chicken Soup For

> the Soul books while taking a hot bubble bath. Get a baby sitter

> and go for a massage -or to the movies -or just to walk around the

> mall. Try to find things to make 'you' happy. Find things that

> your 2 year old can excel in that don't involve speech. What about

> arts and crafts or dance or gymboree classes?

>

> I'll never forget one grandfather at one of our in person meetings

> told the group that the best sound he ever heard in his entire life

> was the sound of his apraxic grandson laughing. He said that a

> child that can't yet talk -but who can laugh out loud just gave him

> chills and so much hope. Think about it -isn't that true?

> Probably a sound better than that -would be the two of you laughing

> together.

>

> Do you observe how the therapist is working with your son and try

to

> imitate her? Probably better yet would be to speak with your

> child's SLP and let her give you " homework " There are also a ton

of

> suggestions in The Late Talker on how to help your child at home

> with issues like your sons.

>

> Having a late talker is even more frustrating than other more

> serious impairments in some ways due to lack of acknowledgment by

> some professionals and the media and the mixed signals we receive

> from the public when we hear anything at all. When a child doesn't

> speak up till the age of two -around your son's age -you are

> hearing " just give him time " while starting to also hear at the

same

> time " what's wrong with him? " It's enough to drive anyone nuts -

> sometimes you just have to find the humor in it.

>

> Below are some archived messages to show you are not alone!

[Guest guest]

Thanks for the encouragement. I will talk to his Ped and SLP, when

she starts, about Frenum clipping. Did your ins. co. say she needed

it clipped? How did you go about it?

> Audra

>

> Hang in there..you will see improvment, it just takes time. It

seems

> like you are getting him the services he needs.

> This may not be at all applicable, but my daughter had the same

> issues with her tongue. She couldn't lift it - stick it out - move

> it etc.. Her tongue was always protruding a bit & she was not aware

> of it. Her slp suggested we look into having her frenum clipped. We

> did & almost right aways she had tongue mobility. With that

> procedure & lots of oral moror therapy, her tongue moves a mile a

> minute & she can now lick food from her lip & side of her mouth.

> Just a thought & maybe something to look into.

>

>

[Guest guest]

hi audra,

when things are hard to do children are going to act out its normal. My son

still has issues when he needs to talk. just think when you have to do

something hard, I think of math, I used act out a lot with that subject,(he-he)

its to feel the way you do. You just want them to be good because it helps,

they do know that but.... they have to do the work.

I hope all goes well

chris

audrachanell <audrachanell@...> wrote:

I apologize if I seem to whine a lot. I just find myself confused

quite a bit.

I had 2 abdominal surgeries (bowel obstructions) while I carried my

son and they believe he may have suffered a loss of oxygen to the

brain and it resulted in Oral Apraxia.

Kellen, my 2-YO, has trouble lifting his tongue, licking his lips and

moving his tongue from side to side. He now recognizes that he has

trouble with his tongue and I notice that he will try to stick it and

move it and realizes that he can't. When I try to assist him, he

becomes upset and rebellious and yells " no! " Has anyone had a child

who behaved like this, but then cooperated with the SLP? He will

begin 1-hr of both Speech and OT session 3X a week, next week. How

long will it take to see improvement? I just feel a bit discouraged

about the help the can provide him with his condition and attitude.

Please excuse my post if it seems whiney or ignorant. I am just a

bit worried and could use a little encouragement.

Thanks

Audra--mom to 2-YO Kellen, Oral Apraxia and lacks fin motor skills

[Guest guest]

i took her to a Ped. oral surgeon to have it checked. He said that

it is a very common precedure & yes, her was short & tight.

Insurance did cover everything. The precedure lasted about 10 - 15

minutes & it was far more tramatic for me than for her. By the time

we left the hospital she was drinking through a sippy cup & eating a

turkey burger that night. No blood either. I was amazed & the

results were immediate.

If you live in the New York area I'd rec. her Dr. in a minute.

> > Audra

> >

> > Hang in there..you will see improvment, it just takes time. It

> seems

> > like you are getting him the services he needs.

> > This may not be at all applicable, but my daughter had the same

> > issues with her tongue. She couldn't lift it - stick it out -

move

> > it etc.. Her tongue was always protruding a bit & she was not

aware

> > of it. Her slp suggested we look into having her frenum clipped.

We

> > did & almost right aways she had tongue mobility. With that

> > procedure & lots of oral moror therapy, her tongue moves a mile

a

> > minute & she can now lick food from her lip & side of her mouth.

> > Just a thought & maybe something to look into.

> >

> >

[Guest guest]

My son also had a frenulectomy, a regular ENT will recommend it if he is

actually tongue tied, and do the surgery, and they will definitely do it if

there are speech issues involved, and yes it will be covered because it is

medically necessary !!! Hope this helps

Michele

[Guest guest]

Susam, thanks for the info...I am on it! I have a follow-up appt

w/his ENT surgeon on June 29. I will definately address this at that

time. Thanks a million

> i took her to a Ped. oral surgeon to have it checked. He said that

> it is a very common precedure & yes, her was short & tight.

> Insurance did cover everything. The precedure lasted about 10 - 15

> minutes & it was far more tramatic for me than for her. By the time

> we left the hospital she was drinking through a sippy cup & eating

a

> turkey burger that night. No blood either. I was amazed & the

> results were immediate.

> If you live in the New York area I'd rec. her Dr. in a minute.

>

>

[Guest guest]

Yes, it helps a lot Michele. Thanks!

> My son also had a frenulectomy, a regular ENT will recommend it if

he is

> actually tongue tied, and do the surgery, and they will definitely

do it if

> there are speech issues involved, and yes it will be covered

because it is

> medically necessary !!! Hope this helps

>

> Michele

>

>

>