Re: doubting everything

[Guest guest]

girl, i totally sympathize with how you are feeling. i gave this tart of a mom

quite an earful when she commented that having my son in gymnastics class was

not fair for her daughter because my son required more help from the teacher. i

gave her a lecture on fairness. i warned her that sometime in her daughter's

life she would need extra help and that i hope she will be treated with respect

and dignity.

my son started using words around 3.5 yrs. and i know in my heart that he will

grow up to be more happy and sucessful that that " perfect " little girl will. i

let him bounce around in stores and lavish him with praise and affection. if

people judge us, then i know not to waste my time being their friend.

laura

Sent from my iPhone

On Apr 14, 2009, at 4:25 PM, " Jake Groups " <jtanana3_groups@...> wrote:

We had bad news from the eye doctor appointment today, and this has caused me to

go into a downward spiral. I am now beginning to doubt everything, including

myself, my therapists, and my choices for . I feel so lost at this point.

I am feeling very overwhelmed working full time, running like a maniac to

therapies, doctor appointments, trying to find the right fit for preschool,

battling for her services in the school, keeping my typical children in a happy

life.

We are now battling glasses, Theratogs, leg braces, augmentative communication,

and tantrums. I often wonder if any of the devices are really going to help her.

I am really struggling with the total lack of progress we are seeing in speech.

We go to the Kaufman Center- which the insurance does not cover, and I am

starting to feel that my hopes were up too high after my first meeting with

. We have now been there 7 months, and we aren't seeing very much progress

in speech at all. She does sign more now though, and is trying to say a few

words, but not like at all I thought would happen. She really only says about 5

words and is going on 3 years old. I feel that her therapist is frustrated with

her- and the therapist is missing quite a few appointments at this point. We do

everything we are supposed to do. We work really hard at home, dedicate every

moment we can to her.

We also go there for OT, and in that case, we are seeing a great deal of

progress, but now, has started tantrums when she sees her OT. I think it

is because she has associated her with work. We are able to work through it so

far, and the sessions are not a waste of time.

I feel at times, that with her delays, she really only acts like 1 1/2, and that

is TOTALLY depressing. I've gotten to the point it is really hard to be around

other kids and their families because all I do is make excuses, or explain the

heck out of everything.

I am at the point that I don't know what else I can do. I feel that I've lost

faith and hope everywhere. I don't have any friends that have children with

special needs, and I am so sick of hearing that God only gives you what you can

handle. I am SO sick of hearing the petty complaints that they couldn't get

their nails done, or about what type of car they are getting etc.. Really, let's

hear a real problem. I'd like to sock them! It's gotten to the point that I

don't socialize much anymore.

I am so tired of hearing from the therapists that they don't have a crystal ball

(that's what our PT said before was walking around age 2). I feel like

they know what she is really going to turn out like, but won't tell us, because

they are making money off of us. (This is so not my usual personality, but I am

exhausted from all of the guessing games).

These are the questions I never get answered: Does she really have CP? How come

the doctors can't tell us. Why does her brain look normal? Why can't she speak?

What will she turn out like? Should I put her in a cognitively impaired

classroom? How far behind is she? Will she catch up (obviously not) What is

HBOT? Does it effect children who have had seizures? Should we try alternative

medicines? I do my own research and it says that developmentally delayed really

mean retarded- is this really true? Is this really just a sugar coat for the

parents of children like ?

I thank you all for listening, but you are the only true people that understand

our daily struggles. I LOVE my little girl and want to do everything right.

Sandy

http://nataliehopesjourney.com

[Guest guest]

tantrums are good. remember that there is a reason for every behavior. she is

trying to communicate her feelings and that should be acknowledged. if she is

upset during ot then ask the ot to be more fun. therapy should be fun. otherwise

it would be considered abuse. there are ways to make anything fun. let your

daughter have some control and see her blossom with pride.

good luck.

laura

Sent from my iPhone

On Apr 14, 2009, at 4:25 PM, " Jake Groups " <jtanana3_groups@...> wrote:

We had bad news from the eye doctor appointment today, and this has caused me to

go into a downward spiral. I am now beginning to doubt everything, including

myself, my therapists, and my choices for . I feel so lost at this point.

I am feeling very overwhelmed working full time, running like a maniac to

therapies, doctor appointments, trying to find the right fit for preschool,

battling for her services in the school, keeping my typical children in a happy

life.

We are now battling glasses, Theratogs, leg braces, augmentative communication,

and tantrums. I often wonder if any of the devices are really going to help her.

I am really struggling with the total lack of progress we are seeing in speech.

We go to the Kaufman Center- which the insurance does not cover, and I am

starting to feel that my hopes were up too high after my first meeting with

. We have now been there 7 months, and we aren't seeing very much progress

in speech at all. She does sign more now though, and is trying to say a few

words, but not like at all I thought would happen. She really only says about 5

words and is going on 3 years old. I feel that her therapist is frustrated with

her- and the therapist is missing quite a few appointments at this point. We do

everything we are supposed to do. We work really hard at home, dedicate every

moment we can to her.

We also go there for OT, and in that case, we are seeing a great deal of

progress, but now, has started tantrums when she sees her OT. I think it

is because she has associated her with work. We are able to work through it so

far, and the sessions are not a waste of time.

I feel at times, that with her delays, she really only acts like 1 1/2, and that

is TOTALLY depressing. I've gotten to the point it is really hard to be around

other kids and their families because all I do is make excuses, or explain the

heck out of everything.

I am at the point that I don't know what else I can do. I feel that I've lost

faith and hope everywhere. I don't have any friends that have children with

special needs, and I am so sick of hearing that God only gives you what you can

handle. I am SO sick of hearing the petty complaints that they couldn't get

their nails done, or about what type of car they are getting etc.. Really, let's

hear a real problem. I'd like to sock them! It's gotten to the point that I

don't socialize much anymore.

I am so tired of hearing from the therapists that they don't have a crystal ball

(that's what our PT said before was walking around age 2). I feel like

they know what she is really going to turn out like, but won't tell us, because

they are making money off of us. (This is so not my usual personality, but I am

exhausted from all of the guessing games).

These are the questions I never get answered: Does she really have CP? How come

the doctors can't tell us. Why does her brain look normal? Why can't she speak?

What will she turn out like? Should I put her in a cognitively impaired

classroom? How far behind is she? Will she catch up (obviously not) What is

HBOT? Does it effect children who have had seizures? Should we try alternative

medicines? I do my own research and it says that developmentally delayed really

mean retarded- is this really true? Is this really just a sugar coat for the

parents of children like ?

I thank you all for listening, but you are the only true people that understand

our daily struggles. I LOVE my little girl and want to do everything right.

Sandy

http://nataliehopesjourney.com

[Guest guest]

we have an aac app on our ipod touch. we did the beta testing on it. i think it

is available on itunes for about 200$? it is fun because we program it to say

knock knock jokes and funny things like " oops, i tooted! " .

even though we dont use it for its intended purpose, it is a fun way to practice

turn taking and practicing longer sentences

laura

Sent from my iPhone

On Apr 14, 2009, at 4:25 PM, " Jake Groups " <jtanana3_groups@...> wrote:

We had bad news from the eye doctor appointment today, and this has caused me to

go into a downward spiral. I am now beginning to doubt everything, including

myself, my therapists, and my choices for . I feel so lost at this point.

I am feeling very overwhelmed working full time, running like a maniac to

therapies, doctor appointments, trying to find the right fit for preschool,

battling for her services in the school, keeping my typical children in a happy

life.

We are now battling glasses, Theratogs, leg braces, augmentative communication,

and tantrums. I often wonder if any of the devices are really going to help her.

I am really struggling with the total lack of progress we are seeing in speech.

We go to the Kaufman Center- which the insurance does not cover, and I am

starting to feel that my hopes were up too high after my first meeting with

. We have now been there 7 months, and we aren't seeing very much progress

in speech at all. She does sign more now though, and is trying to say a few

words, but not like at all I thought would happen. She really only says about 5

words and is going on 3 years old. I feel that her therapist is frustrated with

her- and the therapist is missing quite a few appointments at this point. We do

everything we are supposed to do. We work really hard at home, dedicate every

moment we can to her.

We also go there for OT, and in that case, we are seeing a great deal of

progress, but now, has started tantrums when she sees her OT. I think it

is because she has associated her with work. We are able to work through it so

far, and the sessions are not a waste of time.

I feel at times, that with her delays, she really only acts like 1 1/2, and that

is TOTALLY depressing. I've gotten to the point it is really hard to be around

other kids and their families because all I do is make excuses, or explain the

heck out of everything.

I am at the point that I don't know what else I can do. I feel that I've lost

faith and hope everywhere. I don't have any friends that have children with

special needs, and I am so sick of hearing that God only gives you what you can

handle. I am SO sick of hearing the petty complaints that they couldn't get

their nails done, or about what type of car they are getting etc.. Really, let's

hear a real problem. I'd like to sock them! It's gotten to the point that I

don't socialize much anymore.

I am so tired of hearing from the therapists that they don't have a crystal ball

(that's what our PT said before was walking around age 2). I feel like

they know what she is really going to turn out like, but won't tell us, because

they are making money off of us. (This is so not my usual personality, but I am

exhausted from all of the guessing games).

These are the questions I never get answered: Does she really have CP? How come

the doctors can't tell us. Why does her brain look normal? Why can't she speak?

What will she turn out like? Should I put her in a cognitively impaired

classroom? How far behind is she? Will she catch up (obviously not) What is

HBOT? Does it effect children who have had seizures? Should we try alternative

medicines? I do my own research and it says that developmentally delayed really

mean retarded- is this really true? Is this really just a sugar coat for the

parents of children like ?

I thank you all for listening, but you are the only true people that understand

our daily struggles. I LOVE my little girl and want to do everything right.

Sandy

http://nataliehopesjourney.com

[Guest guest]

Hi Sandy,

First of all -huge hugs to you. And second -I know it probably seems like you

have been on this journey for a long time -but your child is only three. It's

just a tough time- probably a tougher day. I'll never forget when Tanner was

little and it seemed like it was taking so long for him to progress and his one

therapist told me to keep a journal (haha -why I started this group?)

because you can look back over the months to see how far she has come.

I probably don't know the entire story -but not all of our three year olds have

augmentative devices- and most like yours are essentially nonverbal. Most in

this group go that route a bit down the road if still needed and in most cases

it never is. What type is it?

About 's clinic -I could be wrong but doesn't sound like you are working

direct with . Are you? If not -ask her what she thinks about the

progress. I mean 5 words may not seem like lots -but what words are they? I

know you say you are working nonstop and I have no doubt you are. You probably

need a TLC break for yourself. Even if it's just shutting the bathroom door and

locking it!

What is your child's exact diagnosis/symptoms?

Below is a huge archive as the subject of being overwhelmed and frustrated is

not a stranger to this group. Have you read The Late Talker? Is your child on

fish oils? And if yes -what formula and dosage?

I do hope that the following you can pull some advice from. But either way

please know that here you are not alone. Not everyone will replay -but I can

assure you that at one time or another probably 100% in this group that are

parents relate to what you were feeling when you wrote your email!

" Call With any Problem, Anytime

1-800-448-3000 (TDD 1-800-448-1833)

Open 24 hours a day, everyday

The Girls and Boys Town National Hotline is a 24-hour crisis,

resource and referral line. Accredited by the American Association

of Suicidology, our Hotline is staffed by trained counselors who can

respond to your questions every day of the week, 365 days a year.

Over the past decade, more than 5 million callers have found help at

the end of the line.

http://www.girlsandboystown.org/hotline/index.asp

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!

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

And more on EFAs from CHERAB

http://www.cherab.org/information/indexinformation.html#diet

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]

Hi Sandy,

 

I am not sure if I can be of any help to you. However do know that I do hear

your frustration. Please know that as a parent myself who on a daily basis also

has a child who is struggling speech wise. My son does not however have CP. My

son is diagnosed as being developmentally delayed though. He does receive ST and

OT. However my son is age 10 now.

 

I do not ever remember reading anything  during my own research or being told by

any of the professionals that have worked and evaluated my son up to this point

ever saying the term Developmentally delayed means retarded ( your word). I

myself do not believe this is true. I am basing this on my own experience with

my son. Who is definately far from that term. My son also was late to walk 17

mos and 3 wks. He was also late to do all the milestones roll over,sit up,crawl

and even stand. My son was also very very late to potty train age 6+.

 

My son at your daughters current age had about 3 words. My son has been

receiving services since 4 months.

 

Yes I also have heard the famous words in several variations now of we don't

have a crystal ball, we are not sure just how much progress will be made or if

he will ever catch up to his peers etc. The latest one for us is this one he

will make huge gains in his speech and then go no further at some point in time.

That will be where he will stay for life. He will always be hard to understand

but should be able to hold a regular conversation but it will sometimes be hard

for others to understand his speech at times. Yes it makes one want to deck

them. I agree.

 

 I think even the professionals at times do not really know the answers. It does

feel like they are out to get your money and it comes down to money in the end I

think sometimes.

 

However in all our childrens cases though. I personally think that one can not

really make am estimate on how much progress they will each make and exactly how

far each will go in the end as far as catching up to their peers in things.

Everybody is not the same in terms of ones abilities.

 

It gets frustrating hearing others complaints about their lives and the little

things about their children. It irritates me to hear them complain also.

 

HBOT stands for Hyperbaric Oxygen Therapy. Sorry I do not have any experience

with this. I have only heard it mentioned in this group. The rest of your

questions I also have no experience with.

 

You have some great questions that deserve answers I sure hope you get them.

 

I am in the same boat as you on one thing. On my sons brain scans they also came

up normal. My son has some type of brain injury due to traumatic birth. However

it has yet to show in an MRI. They also can not answer the question of why it

does not show up. A statement not a question. I have to wonder this also.

 

I think everyone would have to agree to a point that we are all wondering the

cause of the issues with all our children. As far as I know correct me if I am

wrong no one here as of yet has been exactly told the reason behind them or the

exact cause pinpointed specificailly as xyz is the exact definate cause. So far

I myself have been given guess answers and estimates, and a lot of maybe this

maybe that and a whole lot of theories.. But no exact medical reason or been

able to be presented with exact evidence by tests or exams etc. The only answer

that makes any sense to me for my son so far is the fact that my son has a brain

injury of to some extent that has affected the speech center of his brain, and

 the muscles to some extent. The rest of what I have been told just does not add

up to explain all the issues. Most of which does not make a whole lot of sense

as far as an actual answer.

 

I hope I was of some help to you.

 

Jeanne

NH

From: Jake Groups <jtanana3_groups@...>

Subject: [ ] doubting everything

hypotoniahope ,

Date: Tuesday, April 14, 2009, 5:25 PM

We had bad news from the eye doctor appointment today, and this has caused me to

go into a downward spiral. I am now beginning to doubt everything, including

myself, my therapists, and my choices for . I feel so lost at this point.

I am feeling very overwhelmed working full time, running like a maniac to

therapies, doctor appointments, trying to find the right fit for preschool,

battling for her services in the school, keeping my typical children in a happy

life.

We are now battling glasses, Theratogs, leg braces, augmentative communication,

and tantrums. I often wonder if any of the devices are really going to help her.

I am really struggling with the total lack of progress we are seeing in speech.

We go to the Kaufman Center- which the insurance does not cover, and I am

starting to feel that my hopes were up too high after my first meeting with

. We have now been there 7 months, and we aren't seeing very much progress

in speech at all. She does sign more now though, and is trying to say a few

words, but not like at all I thought would happen. She really only says about 5

words and is going on 3 years old. I feel that her therapist is frustrated with

her- and the therapist is missing quite a few appointments at this point. We do

everything we are supposed to do. We work really hard at home, dedicate every

moment we can to her.

We also go there for OT, and in that case, we are seeing a great deal of

progress, but now, has started tantrums when she sees her OT. I think it

is because she has associated her with work. We are able to work through it so

far, and the sessions are not a waste of time.

I feel at times, that with her delays, she really only acts like 1 1/2, and that

is TOTALLY depressing. I've gotten to the point it is really hard to be around

other kids and their families because all I do is make excuses, or explain the

heck out of everything.

I am at the point that I don't know what else I can do. I feel that I've lost

faith and hope everywhere. I don't have any friends that have children with

special needs, and I am so sick of hearing that God only gives you what you can

handle. I am SO sick of hearing the petty complaints that they couldn't get

their nails done, or about what type of car they are getting etc.. Really, let's

hear a real problem. I'd like to sock them! It's gotten to the point that I

don't socialize much anymore.

I am so tired of hearing from the therapists that they don't have a crystal ball

(that's what our PT said before was walking around age 2). I feel like

they know what she is really going to turn out like, but won't tell us, because

they are making money off of us. (This is so not my usual personality, but I am

exhausted from all of the guessing games).

These are the questions I never get answered: Does she really have CP? How come

the doctors can't tell us. Why does her brain look normal? Why can't she speak?

What will she turn out like? Should I put her in a cognitively impaired

classroom? How far behind is she? Will she catch up (obviously not) What is

HBOT? Does it effect children who have had seizures? Should we try alternative

medicines? I do my own research and it says that developmentally delayed really

mean retarded- is this really true? Is this really just a sugar coat for the

parents of children like ?

I thank you all for listening, but you are the only true people that understand

our daily struggles. I LOVE my little girl and want to do everything right.

Sandy

http://nataliehopes journey.com

[Guest guest]

Sandy,

I'll share one little nugget of my experience. While I can tell you as I read

your post that every word of it seriously could have been me about a year and a

half ago, to limit this from being a 40 page post I'll keep this to one topic.

The synposis is: my daughter, Ainsley, is now 5 years old, and non-verbal,

severe hypotonia and apraxia, with overall developmental delay. We've been

through MRIs, EEGs, genetic testing and have no diagnosis. She was in the NICU

at birth, and has been in therapy (PT, OT, DT, ST) since she came home from the

hospital at 3 weeks. Last year at this time I was offered the opportunity to

work in China for 6 months, beginning last June. Although we'd always wanted an

international opportunity, my husband and I debated long and hard, due to our

fear of pulling Ainsley from therapy. But, in all honesty, her progress in most

areas had stalled for the better part of 6 months if not a year, and we were

upset and frustrated. So, we decided to take the opportunity, and Ainsley took

the summer off from all therapy. The plan was that my husband would take her

back home in Sept for school, but from June-Aug we'd just relax and enjoy the

opportunity without constantly doubting we'd made the right decision.

She completely BLOSSOMED during that three months off therapy. I was the

biggest skeptic, and couldn't believe what I was seeing. The girl who could

barely walk without tripping was climbing on top of chairs. The girl who had

been essentially silent was looking at herself in a mirror and babbling and

playing with her lips and giving herself cues. It was almost like she was so

used to therapy that she started doing it on her own. But the most important

thing was that it gave her the chance to just be a kid. She went to the

playground and pool almost every day. There were no appointments we were

constantly running to. And although I was so scared at the time for her to take

those three months off, it was the BEST thing we ever did for her and her

progress.

When we came back home, we went right back to the daily ST/PT/OT grind, but

she's been much more engaged in her therapy sessions, and overall just a lot

happier kid. I think, after 4+ years of daily therapy she just needed a break.

While taking such a dramatic break is a very tough, and very personal decision

to make, I really do feel it made a difference for my daughter. Our poor kids

will likely be stuck working in therapy for many years to come, while most of

their peers are having fun with friends. I was fortunate to be almost forced

into realizing that just as sometimes I need a vacation from work, so does my

daughter.

Good luck as you move forward, and know that although your close friends do not

understand what you are going through, there are others out there who do. Write

anytime.

>

> We had bad news from the eye doctor appointment today, and this has caused me

to go into a downward spiral. I am now beginning to doubt everything, including

myself, my therapists, and my choices for . I feel so lost at this

point. I am feeling very overwhelmed working full time, running like a maniac

to therapies, doctor appointments, trying to find the right fit for preschool,

battling for her services in the school, keeping my typical children in a happy

life.

>

> We are now battling glasses, Theratogs, leg braces, augmentative

communication, and tantrums. I often wonder if any of the devices are really

going to help her.

>

> I am really struggling with the total lack of progress we are seeing in

speech. We go to the Kaufman Center- which the insurance does not cover, and I

am starting to feel that my hopes were up too high after my first meeting with

. We have now been there 7 months, and we aren't seeing very much progress

in speech at all. She does sign more now though, and is trying to say a few

words, but not like at all I thought would happen. She really only says about 5

words and is going on 3 years old. I feel that her therapist is frustrated with

her- and the therapist is missing quite a few appointments at this point. We do

everything we are supposed to do. We work really hard at home, dedicate every

moment we can to her.

>

> We also go there for OT, and in that case, we are seeing a great deal of

progress, but now, has started tantrums when she sees her OT. I think

it is because she has associated her with work. We are able to work through it

so far, and the sessions are not a waste of time.

>

> I feel at times, that with her delays, she really only acts like 1 1/2, and

that is TOTALLY depressing. I've gotten to the point it is really hard to be

around other kids and their families because all I do is make excuses, or

explain the heck out of everything.

>

> I am at the point that I don't know what else I can do. I feel that I've lost

faith and hope everywhere. I don't have any friends that have children with

special needs, and I am so sick of hearing that God only gives you what you can

handle. I am SO sick of hearing the petty complaints that they couldn't get

their nails done, or about what type of car they are getting etc.. Really,

let's hear a real problem. I'd like to sock them! It's gotten to the point

that I don't socialize much anymore.

>

> I am so tired of hearing from the therapists that they don't have a crystal

ball (that's what our PT said before was walking around age 2). I feel

like they know what she is really going to turn out like, but won't tell us,

because they are making money off of us. (This is so not my usual personality,

but I am exhausted from all of the guessing games).

>

> These are the questions I never get answered: Does she really have CP? How

come the doctors can't tell us. Why does her brain look normal? Why can't she

speak? What will she turn out like? Should I put her in a cognitively impaired

classroom? How far behind is she? Will she catch up (obviously not) What is

HBOT? Does it effect children who have had seizures? Should we try alternative

medicines? I do my own research and it says that developmentally delayed really

mean retarded- is this really true? Is this really just a sugar coat for the

parents of children like ?

>

>

> I thank you all for listening, but you are the only true people that

understand our daily struggles. I LOVE my little girl and want to do everything

right.

>

> Sandy

> http://nataliehopesjourney.com

>

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