Re: Being in denial is a luxury I don't have...*vent*

[Guest guest]

Hi Sara:

I know how you feel. I have struggled with this mostly with my

mother-in-law. I haven't had much denial from my husband. He is

supportive and backs me when I need him to. It use to get me so down

every time I would get off the phone with my MIL. She would

constantly ask me is therapy really helping him, does he really have

apraxia? On and on the questions and denial from her. I finally

decided I would just not bring up Landon and if she asked I would

answer the question and not go into great detail. I just recently

wrote up a paper on what is apraxia to give to the school district

at our first meeting. I plan on giving her a copy of that. Perhaps

you could buy the family members that are in denial the Late Talker

book. If they read it great, if not you have at least given them

the oportunity to learn more about apraxia. I think the saddest

thing is the kids lose out. My MIL is much closer to my 6 yr old

than Landon (apraxic). She says she doesn't play favorites, but

Hayden just knows all the perfect words she likes to hear. Thank

God my Father-in-law adores Landon and notices that he gets left out

sometimes. Let me know if you want me to email you the apraxia

paper I wrote up. I have let my SLP read it and she said it sounded

like an accurate description. Also maybe when you get the diagnosis

of apraxia it will help. That also caused family members to

question me. I was saying apraxia and they were all saying autism.

I had to take him to a Neuroligist to have him diagnosed so I could

get him more help. Doing that also helped the family realize that it

was a serious communication impairment and he wouldn't just grow out

of it. It will take some time. Stay strong and do exactly what you

are doing to help your child.

Good luck to you

Tina

>

> I am so frustrated I could cry right now. You guys are probably

about the

> only ones in the world who could possibly understand what I am

going

> through, I'm certain at least a few have been there yourselves.

>

> Why is it I seem to be the only person in my son's life who seems

to think

> he has a problem? He will be 3 in August, and says only 35 words.

At this

> age he should be saying what, 1000-1500 words? So his vocabulary

being only

> about 3.5% of what it should be is just fine, nothing to worry

about? You'd

> think so hearing everyone around me talk. I was " jumping the gun "

when we

> had him evaluated at 26 months by Early Intervention, even though

I'd been

> wanting to do it since 17 months. When he was approved for speech

therapy,

> then it was " Oh, well, he'll talk when he's ready " . He has made

very little

> progress, and the ST, myself, and his caseworker are all certain

he has

> verbal apraxia. I made an appt with a pediatric nuerologist, he is

having

> the tests done next week. In addition I scheduled him to have a

full

> speech-language evaluation today at the local university's speech

clinic. My

> son got sick over the weekend, so we had to postpone the

appointment. My

> husband's reaction? " Thats fine, I didn't think we needed to do

that

> anyways. I think you should just wait and see if the neurologists

tests come

> back with anything. " A few days ago he made a comment about how

our son " Is

> stubborn, he just doesn't want to talk " . The kicker? My husband is

a

> pediatric nurse practitioner. If anyone should be able to look at

this

> situation and say hey, something isn't right, it should be him. In

anyone

> else's child he could see it, but with our own its like he's

sticking his

> head in the sand and pretending there isn't a problem, just like

his family

> is doing.

>

> I can handle those types of comments from friends and aquaintances

(gosh

> knows I'm used to it), but from husband and family its killing me,

and

> making me more determined to get the evaluation and finally a

diagnosis

> made. We have no local support group here, and it feels like I am

doing this

> totally alone, because no one else seems to understand or want to

admit

> there is a problem. He should be having his evalution/IEP meeting

with the

> school system in July, and I plan to go in armed to the teeth with

info to

> make sure he gets the amount of speech therapy he needs. I'd love

to while

> away the days in denial too, but someone has to advocate for my

son. Why are

> they making me feel like I am the in the wrong here??

>

> Sara

> (who is feeling very stressed, tired, and defeated today.)

>

>

>

[Guest guest]

Sara,

Vent away! You're totally right that probably every single one of

us here has been there done that. I'm so sorry that you're feeling

so low right now - we understand. It's not easy to do it all on

your own, and it's even worse when your friends and family seem to

be working against you. What I try to focus on is how hard I'm

working for my daughter and how proud that makes me feel.

Have you looked for a local support group? It doesn't have to be

specific for apraxia (though that would be wonderful!). Any kind of

special needs support would help a lot with things like dealing with

the school district and finding therapists, and dealing with family

members who are in denial. In the meantime, you have all of us

here! Use us all as much as you like - we don't care if you just

want to vent!

Kerri

>

> I am so frustrated I could cry right now. You guys are probably

about the

> only ones in the world who could possibly understand what I am

going

> through, I'm certain at least a few have been there yourselves.

>

> Why is it I seem to be the only person in my son's life who seems

to think

> he has a problem? He will be 3 in August, and says only 35 words.

At this

> age he should be saying what, 1000-1500 words? So his vocabulary

being only

> about 3.5% of what it should be is just fine, nothing to worry

about? You'd

> think so hearing everyone around me talk. I was " jumping the gun "

when we

> had him evaluated at 26 months by Early Intervention, even though

I'd been

> wanting to do it since 17 months. When he was approved for speech

therapy,

> then it was " Oh, well, he'll talk when he's ready " . He has made

very little

> progress, and the ST, myself, and his caseworker are all certain

he has

> verbal apraxia. I made an appt with a pediatric nuerologist, he is

having

> the tests done next week. In addition I scheduled him to have a

full

> speech-language evaluation today at the local university's speech

clinic. My

> son got sick over the weekend, so we had to postpone the

appointment. My

> husband's reaction? " Thats fine, I didn't think we needed to do

that

> anyways. I think you should just wait and see if the neurologists

tests come

> back with anything. " A few days ago he made a comment about how

our son " Is

> stubborn, he just doesn't want to talk " . The kicker? My husband is

a

> pediatric nurse practitioner. If anyone should be able to look at

this

> situation and say hey, something isn't right, it should be him. In

anyone

> else's child he could see it, but with our own its like he's

sticking his

> head in the sand and pretending there isn't a problem, just like

his family

> is doing.

>

> I can handle those types of comments from friends and aquaintances

(gosh

> knows I'm used to it), but from husband and family its killing me,

and

> making me more determined to get the evaluation and finally a

diagnosis

> made. We have no local support group here, and it feels like I am

doing this

> totally alone, because no one else seems to understand or want to

admit

> there is a problem. He should be having his evalution/IEP meeting

with the

> school system in July, and I plan to go in armed to the teeth with

info to

> make sure he gets the amount of speech therapy he needs. I'd love

to while

> away the days in denial too, but someone has to advocate for my

son. Why are

> they making me feel like I am the in the wrong here??

>

> Sara

> (who is feeling very stressed, tired, and defeated today.)

>

>

>

[Guest guest]

Sara:

I'll say we've been there. My mother-in-law was a

nurse. When our son ph was non-verbal at 2+ yuears

of age, she stood in our kitchen and said to me " I'm

telling you not as a mother-in-law but as a nurse,

ph doesn't need to be evaluated (by Early

Intervention " ). You take shots from all over but

family is the worst. People have pride, I guess, or

don't want to be embarassed or just can't handle if

something serious is wrong. The important thing is to

stand strong and fight for what you know is right.

Everyone is going to have an opinion whether you do

something or not so you may as well go ahead. We did

and ph was mainstreamed in 1st grade, even though

he has just been re-diagnosed with Asperger's. My

wife found strength neither of us knew she had to deal

with Joe's issues and I could never have gotten him as

far as he ahs come without the work she did. And she

did it all with her own mother's disapproval and

meddling.

Also, try and be patient with your husband. Men do

sometimes have a harder time dealing with this,

especially with sons. It's hard to explain but I've

seen it and had professionals talk with me about it.

My take was always that Joe was my boy and it was my

responsibility to fight for him and make sure he had

the best chances possible. I guess I got angry once I

got over the shock of hearing the autism word and so I

acted. Everyone feels a loss differently and it may

take your husband awhile to deal with what's

happening. That's just my opinion, of course, but I

do hope it helps hearing some of the male perspective.

Good luck and hang tough!

Jim, dad to ph, almost 7, Asperger's

--- Sara J <sarasemailgroups@...> wrote:

> I am so frustrated I could cry right now. You guys

> are probably about the

> only ones in the world who could possibly understand

> what I am going

> through, I'm certain at least a few have been there

> yourselves.

>

> Why is it I seem to be the only person in my son's

> life who seems to think

> he has a problem? He will be 3 in August, and says

> only 35 words. At this

> age he should be saying what, 1000-1500 words? So

> his vocabulary being only

> about 3.5% of what it should be is just fine,

> nothing to worry about? You'd

> think so hearing everyone around me talk. I was

> " jumping the gun " when we

> had him evaluated at 26 months by Early

> Intervention, even though I'd been

> wanting to do it since 17 months. When he was

> approved for speech therapy,

> then it was " Oh, well, he'll talk when he's ready " .

> He has made very little

> progress, and the ST, myself, and his caseworker are

> all certain he has

> verbal apraxia. I made an appt with a pediatric

> nuerologist, he is having

> the tests done next week. In addition I scheduled

> him to have a full

> speech-language evaluation today at the local

> university's speech clinic. My

> son got sick over the weekend, so we had to postpone

> the appointment. My

> husband's reaction? " Thats fine, I didn't think we

> needed to do that

> anyways. I think you should just wait and see if the

> neurologists tests come

> back with anything. " A few days ago he made a

> comment about how our son " Is

> stubborn, he just doesn't want to talk " . The kicker?

> My husband is a

> pediatric nurse practitioner. If anyone should be

> able to look at this

> situation and say hey, something isn't right, it

> should be him. In anyone

> else's child he could see it, but with our own its

> like he's sticking his

> head in the sand and pretending there isn't a

> problem, just like his family

> is doing.

>

> I can handle those types of comments from friends

> and aquaintances(gosh

> knows I'm used to it), but from husband and family

> its killing me, and

> making me more determined to get the evaluation and

> finally a diagnosis

> made. We have no local support group here, and it

> feels like I am doing this

> totally alone, because no one else seems to

> understand or want to admit

> there is a problem. He should be having his

> evalution/IEP meeting with the

> school system in July, and I plan to go in armed to

> the teeth with info to

> make sure he gets the amount of speech therapy he

> needs. I'd love to while

> away the days in denial too, but someone has to

> advocate for my son. Why are

> they making me feel like I am the in the wrong

> here??

>

> Sara

> (who is feeling very stressed, tired, and defeated

> today.)

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

__________________________________________________

[Guest guest]

Tina,

Im going in for my sons meeting in May, and I would be VERY interested in

your Apraxia Paper, if I may? Can you email it to me? I would like to see if it

will help at my meeting, Im going into his meeting fully loaded - I really

want to soup up his speech next year, as I am not real happy with his ST.

thanks!

Michele

[Guest guest]

Hi Sara,

Sorry you are going through a hard time. I know how frustrating it can be

when people offer explanations that are just complete crap. I told a few

people at my work about my son and apraxia. I dont know if people just think

they know it all or are just trying to be supportive and encouraging, but I

hear all the things. He'll talk soon, you never know with therapy he may

just start to talk and you can shut him up. The newest I heard is someone's

granddaughter got therapy and now you can't shut her up. I asked what she

got therapy for......they dont know.

My family was just as bad. The eye rolls from my parents. Them saying my son

is lazy or will talk when he wants. My sis in law said I am overreacting.

He's fine. Her kids talked late. I said my kids never have...so this isn't

normal for us. I felt like calling her when we were told apraxia and be like

HA. I did talk to my bro and he was still saying oh I am sure he'll be fine.

Yes, he will, I know that.

My parents have finally accepted it and are much better. They know now it's

not just him being lazy.

The pediatrician was no help really, except the referral. She told me " you

know what they will tell you, he has a delay " . DUH, isn't that a good reason

to get help?? I decided at his next ped. appt, I am bring her the book the

Late Talker.

My husband has been pretty supportive I really can't complain. He knew

something was askew with our son.

You aren't alone here. I hope your hubby comes around. Keep those

appointments. Is there any way he can go to the speech evaluation instead of

you? Or go WITH you? Seeing your child everyday in normal activities you may

not think much. Seeing him struggle with a speech therapist to utter wordss

may help him see how hard things really are for your son.

Keep your chin up girl. At least YOU know whats going on and you are getting

your son help.

April

>--- Sara J <sarasemailgroups@...> wrote:

>

> > I am so frustrated I could cry right now. You guys

> > are probably about the

> > only ones in the world who could possibly understand

> > what I am going

> > through, I'm certain at least a few have been there

> > yourselves.

> >

> > Why is it I seem to be the only person in my son's

> > life who seems to think

> > he has a problem? He will be 3 in August, and says

> > only 35 words. At this

> > age he should be saying what, 1000-1500 words? So

> > his vocabulary being only

> > about 3.5% of what it should be is just fine,

> > nothing to worry about? You'd

> > think so hearing everyone around me talk. I was

> > " jumping the gun " when we

> > had him evaluated at 26 months by Early

> > Intervention, even though I'd been

> > wanting to do it since 17 months. When he was

> > approved for speech therapy,

> > then it was " Oh, well, he'll talk when he's ready " .

> > He has made very little

> > progress, and the ST, myself, and his caseworker are

> > all certain he has

> > verbal apraxia. I made an appt with a pediatric

> > nuerologist, he is having

> > the tests done next week. In addition I scheduled

> > him to have a full

> > speech-language evaluation today at the local

> > university's speech clinic. My

> > son got sick over the weekend, so we had to postpone

> > the appointment. My

> > husband's reaction? " Thats fine, I didn't think we

> > needed to do that

> > anyways. I think you should just wait and see if the

> > neurologists tests come

> > back with anything. " A few days ago he made a

> > comment about how our son " Is

> > stubborn, he just doesn't want to talk " . The kicker?

> > My husband is a

> > pediatric nurse practitioner. If anyone should be

> > able to look at this

> > situation and say hey, something isn't right, it

> > should be him. In anyone

> > else's child he could see it, but with our own its

> > like he's sticking his

> > head in the sand and pretending there isn't a

> > problem, just like his family

> > is doing.

> >

> > I can handle those types of comments from friends

> > and aquaintances(gosh

> > knows I'm used to it), but from husband and family

> > its killing me, and

> > making me more determined to get the evaluation and

> > finally a diagnosis

> > made. We have no local support group here, and it

> > feels like I am doing this

> > totally alone, because no one else seems to

> > understand or want to admit

> > there is a problem. He should be having his

> > evalution/IEP meeting with the

> > school system in July, and I plan to go in armed to

> > the teeth with info to

> > make sure he gets the amount of speech therapy he

> > needs. I'd love to while

> > away the days in denial too, but someone has to

> > advocate for my son. Why are

> > they making me feel like I am the in the wrong

> > here??

> >

> > Sara

> > (who is feeling very stressed, tired, and defeated

> > today.)

> >

[Guest guest]

venting too! try a 12 yr old with it! we found out when he was about 4 .. family

is great outsider are not .. john is also autistic and i always fight over his

iep .. a lot of professional.. think they have all the answer .. always feel

like im doing something wrong or not enough .. john is a beautiful child and

makes friends well it is the adults who act like they have lost thier minds .. i

dont know of any websites other then this one .. where are you located.. would

love to chat sometime

Jon and April <jonaprilpow@...> wrote: Hi Sara,

Sorry you are going through a hard time. I know how frustrating it can be

when people offer explanations that are just complete crap. I told a few

people at my work about my son and apraxia. I dont know if people just think

they know it all or are just trying to be supportive and encouraging, but I

hear all the things. He'll talk soon, you never know with therapy he may

just start to talk and you can shut him up. The newest I heard is someone's

granddaughter got therapy and now you can't shut her up. I asked what she

got therapy for......they dont know.

My family was just as bad. The eye rolls from my parents. Them saying my son

is lazy or will talk when he wants. My sis in law said I am overreacting.

He's fine. Her kids talked late. I said my kids never have...so this isn't

normal for us. I felt like calling her when we were told apraxia and be like

HA. I did talk to my bro and he was still saying oh I am sure he'll be fine.

Yes, he will, I know that.

My parents have finally accepted it and are much better. They know now it's

not just him being lazy.

The pediatrician was no help really, except the referral. She told me " you

know what they will tell you, he has a delay " . DUH, isn't that a good reason

to get help?? I decided at his next ped. appt, I am bring her the book the

Late Talker.

My husband has been pretty supportive I really can't complain. He knew

something was askew with our son.

You aren't alone here. I hope your hubby comes around. Keep those

appointments. Is there any way he can go to the speech evaluation instead of

you? Or go WITH you? Seeing your child everyday in normal activities you may

not think much. Seeing him struggle with a speech therapist to utter wordss

may help him see how hard things really are for your son.

Keep your chin up girl. At least YOU know whats going on and you are getting

your son help.

April

>--- Sara J <sarasemailgroups@...> wrote:

>

> > I am so frustrated I could cry right now. You guys

> > are probably about the

> > only ones in the world who could possibly understand

> > what I am going

> > through, I'm certain at least a few have been there

> > yourselves.

> >

> > Why is it I seem to be the only person in my son's

> > life who seems to think

> > he has a problem? He will be 3 in August, and says

> > only 35 words. At this

> > age he should be saying what, 1000-1500 words? So

> > his vocabulary being only

> > about 3.5% of what it should be is just fine,

> > nothing to worry about? You'd

> > think so hearing everyone around me talk. I was

> > " jumping the gun " when we

> > had him evaluated at 26 months by Early

> > Intervention, even though I'd been

> > wanting to do it since 17 months. When he was

> > approved for speech therapy,

> > then it was " Oh, well, he'll talk when he's ready " .

> > He has made very little

> > progress, and the ST, myself, and his caseworker are

> > all certain he has

> > verbal apraxia. I made an appt with a pediatric

> > nuerologist, he is having

> > the tests done next week. In addition I scheduled

> > him to have a full

> > speech-language evaluation today at the local

> > university's speech clinic. My

> > son got sick over the weekend, so we had to postpone

> > the appointment. My

> > husband's reaction? " Thats fine, I didn't think we

> > needed to do that

> > anyways. I think you should just wait and see if the

> > neurologists tests come

> > back with anything. " A few days ago he made a

> > comment about how our son " Is

> > stubborn, he just doesn't want to talk " . The kicker?

> > My husband is a

> > pediatric nurse practitioner. If anyone should be

> > able to look at this

> > situation and say hey, something isn't right, it

> > should be him. In anyone

> > else's child he could see it, but with our own its

> > like he's sticking his

> > head in the sand and pretending there isn't a

> > problem, just like his family

> > is doing.

> >

> > I can handle those types of comments from friends

> > and aquaintances(gosh

> > knows I'm used to it), but from husband and family

> > its killing me, and

> > making me more determined to get the evaluation and

> > finally a diagnosis

> > made. We have no local support group here, and it

> > feels like I am doing this

> > totally alone, because no one else seems to

> > understand or want to admit

> > there is a problem. He should be having his

> > evalution/IEP meeting with the

> > school system in July, and I plan to go in armed to

> > the teeth with info to

> > make sure he gets the amount of speech therapy he

> > needs. I'd love to while

> > away the days in denial too, but someone has to

> > advocate for my son. Why are

> > they making me feel like I am the in the wrong

> > here??

> >

> > Sara

> > (who is feeling very stressed, tired, and defeated

> > today.)

[Guest guest]

Hi Sara. I'm brand new to this forum, but I feel like I could have

written your vent! I have to tell you, my husband was the same way

until our son's speech therapist gave us a serious talk about how

concerned she was. That made it hit home for my husband, hearing

from a professional and not just his wife who tends to worry about

her baby anyway. I also started pointing out differences in how

our friends' kids (of the same age) were acting and though he

dismissed that at first ( " every kid is different " ), I think little

by little it started to add up for him. The biggest thing to turn

him around has been reading the Late Talking Child (or Late Talker,

blanking on the title right now). Now he's on board with the

program. No one else in our families is, but at least he is. As

for your husband's profession, all the therapists I've talked to

complain that pediatricians don't typically have a good attitude

about early intervention. They tend to want to wait and see.

Ironically, it may be that culture in the medical community that

feeds your husband's denial. I know it's frustrating but just think

of how lucky your child is to have at least one parent doing

everything in her power to help him. Some kids don't even have

that. Hang in there.

>

> I am so frustrated I could cry right now. You guys are probably

about the

> only ones in the world who could possibly understand what I am

going

> through, I'm certain at least a few have been there yourselves.

>

> Why is it I seem to be the only person in my son's life who seems

to think

> he has a problem? He will be 3 in August, and says only 35 words.

At this

> age he should be saying what, 1000-1500 words? So his vocabulary

being only

> about 3.5% of what it should be is just fine, nothing to worry

about? You'd

> think so hearing everyone around me talk. I was " jumping the gun "

when we

> had him evaluated at 26 months by Early Intervention, even though

I'd been

> wanting to do it since 17 months. When he was approved for speech

therapy,

> then it was " Oh, well, he'll talk when he's ready " . He has made

very little

> progress, and the ST, myself, and his caseworker are all certain

he has

> verbal apraxia. I made an appt with a pediatric nuerologist, he is

having

> the tests done next week. In addition I scheduled him to have a

full

> speech-language evaluation today at the local university's speech

clinic. My

> son got sick over the weekend, so we had to postpone the

appointment. My

> husband's reaction? " Thats fine, I didn't think we needed to do

that

> anyways. I think you should just wait and see if the neurologists

tests come

> back with anything. " A few days ago he made a comment about how

our son " Is

> stubborn, he just doesn't want to talk " . The kicker? My husband is

a

> pediatric nurse practitioner. If anyone should be able to look at

this

> situation and say hey, something isn't right, it should be him. In

anyone

> else's child he could see it, but with our own its like he's

sticking his

> head in the sand and pretending there isn't a problem, just like

his family

> is doing.

>

> I can handle those types of comments from friends and aquaintances

(gosh

> knows I'm used to it), but from husband and family its killing me,

and

> making me more determined to get the evaluation and finally a

diagnosis

> made. We have no local support group here, and it feels like I am

doing this

> totally alone, because no one else seems to understand or want to

admit

> there is a problem. He should be having his evalution/IEP meeting

with the

> school system in July, and I plan to go in armed to the teeth with

info to

> make sure he gets the amount of speech therapy he needs. I'd love

to while

> away the days in denial too, but someone has to advocate for my

son. Why are

> they making me feel like I am the in the wrong here??

>

> Sara

> (who is feeling very stressed, tired, and defeated today.)

>

>

>

[Guest guest]

I am in the upstate NY area...

>From: david marlow <gootee65@...>

>Reply-

>

>Subject: Re: [ ] Being in denial is a luxury I don't

>have...*vent*

>Date: Tue, 11 Apr 2006 08:05:08 -0700 (PDT)

>

>venting too! try a 12 yr old with it! we found out when he was about 4 ..

>family is great outsider are not .. john is also autistic and i always

>fight over his iep .. a lot of professional.. think they have all the

>answer .. always feel like im doing something wrong or not enough .. john

>is a beautiful child and makes friends well it is the adults who act like

>they have lost thier minds .. i dont know of any websites other then this

>one .. where are you located.. would love to chat sometime

>

>Jon and April <jonaprilpow@...> wrote: Hi Sara,

>

>Sorry you are going through a hard time. I know how frustrating it can be

>when people offer explanations that are just complete crap. I told a few

>people at my work about my son and apraxia. I dont know if people just

>think

>they know it all or are just trying to be supportive and encouraging, but I

>hear all the things. He'll talk soon, you never know with therapy he may

>just start to talk and you can shut him up. The newest I heard is someone's

>granddaughter got therapy and now you can't shut her up. I asked what she

>got therapy for......they dont know.

>My family was just as bad. The eye rolls from my parents. Them saying my

>son

>is lazy or will talk when he wants. My sis in law said I am overreacting.

>He's fine. Her kids talked late. I said my kids never have...so this isn't

>normal for us. I felt like calling her when we were told apraxia and be

>like

>HA. I did talk to my bro and he was still saying oh I am sure he'll be

>fine.

>Yes, he will, I know that.

>My parents have finally accepted it and are much better. They know now it's

>not just him being lazy.

>The pediatrician was no help really, except the referral. She told me " you

>know what they will tell you, he has a delay " . DUH, isn't that a good

>reason

>to get help?? I decided at his next ped. appt, I am bring her the book the

>Late Talker.

>My husband has been pretty supportive I really can't complain. He knew

>something was askew with our son.

>You aren't alone here. I hope your hubby comes around. Keep those

>appointments. Is there any way he can go to the speech evaluation instead

>of

>you? Or go WITH you? Seeing your child everyday in normal activities you

>may

>not think much. Seeing him struggle with a speech therapist to utter

>wordss

>may help him see how hard things really are for your son.

>

>Keep your chin up girl. At least YOU know whats going on and you are

>getting

>your son help.

>

>April

>

>

> >--- Sara J <sarasemailgroups@...> wrote:

> >

> > > I am so frustrated I could cry right now. You guys

> > > are probably about the

> > > only ones in the world who could possibly understand

> > > what I am going

> > > through, I'm certain at least a few have been there

> > > yourselves.

> > >

> > > Why is it I seem to be the only person in my son's

> > > life who seems to think

> > > he has a problem? He will be 3 in August, and says

> > > only 35 words. At this

> > > age he should be saying what, 1000-1500 words? So

> > > his vocabulary being only

> > > about 3.5% of what it should be is just fine,

> > > nothing to worry about? You'd

> > > think so hearing everyone around me talk. I was

> > > " jumping the gun " when we

> > > had him evaluated at 26 months by Early

> > > Intervention, even though I'd been

> > > wanting to do it since 17 months. When he was

> > > approved for speech therapy,

> > > then it was " Oh, well, he'll talk when he's ready " .

> > > He has made very little

> > > progress, and the ST, myself, and his caseworker are

> > > all certain he has

> > > verbal apraxia. I made an appt with a pediatric

> > > nuerologist, he is having

> > > the tests done next week. In addition I scheduled

> > > him to have a full

> > > speech-language evaluation today at the local

> > > university's speech clinic. My

> > > son got sick over the weekend, so we had to postpone

> > > the appointment. My

> > > husband's reaction? " Thats fine, I didn't think we

> > > needed to do that

> > > anyways. I think you should just wait and see if the

> > > neurologists tests come

> > > back with anything. " A few days ago he made a

> > > comment about how our son " Is

> > > stubborn, he just doesn't want to talk " . The kicker?

> > > My husband is a

> > > pediatric nurse practitioner. If anyone should be

> > > able to look at this

> > > situation and say hey, something isn't right, it

> > > should be him. In anyone

> > > else's child he could see it, but with our own its

> > > like he's sticking his

> > > head in the sand and pretending there isn't a

> > > problem, just like his family

> > > is doing.

> > >

> > > I can handle those types of comments from friends

> > > and aquaintances(gosh

> > > knows I'm used to it), but from husband and family

> > > its killing me, and

> > > making me more determined to get the evaluation and

> > > finally a diagnosis

> > > made. We have no local support group here, and it

> > > feels like I am doing this

> > > totally alone, because no one else seems to

> > > understand or want to admit

> > > there is a problem. He should be having his

> > > evalution/IEP meeting with the

> > > school system in July, and I plan to go in armed to

> > > the teeth with info to

> > > make sure he gets the amount of speech therapy he

> > > needs. I'd love to while

> > > away the days in denial too, but someone has to

> > > advocate for my son. Why are

> > > they making me feel like I am the in the wrong

> > > here??

> > >

> > > Sara

> > > (who is feeling very stressed, tired, and defeated

> > > today.)

>

>

>

[Guest guest]

Hi Sara!

I am so sorry I missed your message when you first posted it. Lots

going on here with an upcoming International conference that CHERAB

was invited to early May in Qatar and trying to get everything ready

for that while having a house full of company visiting from New York

(kid's cousins and all!) that my children rarely get to see - while

my children are still in school this week! (but pulling them out

early today to play at the Orlando " parks " !)

It's no shock that your husband and all are still in denial -after

all the magic age most don't worry until is 'after' 3 which won't be

till...what? 5 whole months from now. Hey forget 35 words like

your son - Tanner's PEDIATRICIAN (!!) was not worried about Tanner's

complete lack of any words prior to his diagnosis of apraxia at 3

years 10 months. Tanner's only " words " were " ma " and " mmmm " The

advice I was given as it says in The Late Talker book " If he's still

not talking at 3, then we'll send him for a speech and hearing

evaluation " No not kidding -and my co author of The Late Talker

neurodevelopmental pediatrician Marilyn Agin MD, knows this. You

know what Dr. Agin told me? Years later they regret they told me

that. They felt bad about it and since then they are on it

with " late talkers " I mean as you know -what's the harm of Early

Intervention as a " just in case " ?

(and PS -zero to three State EI is only up to age 3!)

Who knows perhaps they are all correct and within the next 5 months

he'll have a developmental surge and start reciting War and Peace.

But...you are the very brave Mom who is willing to pull off the rose

colored glasses to really take a good look at reality and what will

best help your child now no matter what the reason for the delay.

And...especially due to the 'just in case' he is not just a late

talker. Nobody wants to look back to " if onlys " I found the best

way to address those in denial is not to get upset with them or try

to shove information on them, but to just say " I hope you are right

with all my heart, but I'm doing what I " m doing just in case he's

not just a late talker " Your husband more than anyone has to be

fully aware of the overwhelming amounts of research of the benefits

of Early Intervention. In addition you probably have a copy of The

Late Talker book laying around the house he could have looked

through, which was co authored by Dr. Agin, who was Medical Director

for NYC Early Intervention, the largest of it's kind in the US, for

almost a decade!

What will change the views? If your child doesn't have a simple

delay -time will. Trust me there will be no " I told you so " on your

part down the road if it ends up that you are correct and they are

all wrong. You will see their pain and it will be an unspoken

guilt. I have a house full of those very people here right now and

to this day even as well as my 9 year old Tanner speaks and is

understood by all and all the time - it's clear to all he is speech

impaired. Why? His sentences are in general shorter and less

complex and at times his rate of speech is just a bit slower. His

speech is best while he is reading because then the words are there

for him to help him motor plan. You should see my relative's eyes

light up and how they smile in pride when they hear Tanner read out

loud. It makes me sad because in those moments while he sounds like

any other 9 year old I can for those few moments pretend they were

all right. No for me it's not being upset about the denial that was

all around me -it's being upset they weren't right.

Now if it was the other way around and they are all right of course

that will be thrown at you probably in family joking the rest of

your life!

They are doing what they are doing because like you, they love your

son, and you. They don't want you to be upset and they don't want

to yet give up the hope that what is going on is just a simple delay

in speech.

Let me know what state you are in again and where you lived while

you were pregnant and perhaps I can let you know the odds of them

being right. I too am hoping that they are right -but of course am

hear for you to give you the information on what you need to do

right now " just in case " they are not.

Below are some archives that may (or may not) help. Have to run!

If you read any of the Chicken Soup for the Soul books you will find

that there are many who went through years of horrible times as

children through adulthood, who rose above. If you are stressed, you

don't have to do it alone -we are here for you, and there also is

help out there waiting for you.

For example:

Here is a place you can call right now no matter

what time/day it is when you read this:

" 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

A great nonprofit to turn to if you need more support is Friends

Help Connection http://www.48friend.org which was founded by Roxanne

Black who has a heart of gold. It's really meant for the person who

has the health issue, but you could call them Toll-free at 1-800/48-

FRIEND to see if they have suggestions for families in your

situation.

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]

My fourth child 34 mos only says " mama " on his own and he will

say " dada " and " nana " if asked " Who is this? " when we are pointing

to his daddy or his sister. Since he's been in therapy he calls

himself " baba " for " baby " I think and he says " nana " when pointing

to bananas (yet he's never eaten one - he won't).

A mother often knows something is wrong before others in the family.

My husband came around after my son was evaluated. Sometimes people

need to hear from a *professional* even when the professional

replies on mom's description of the child!?!

{{{Hugs}}}

Sincerely,

Debra

>

> I am so frustrated I could cry right now. You guys are probably

about the only ones in the world who could possibly understand what

I am going through, I'm certain at least a few have been there

yourselves. Why is it I seem to be the only person in my son's life

who seems to think he has a problem? He will be 3 in August, and

says only 35 words. At this age he should be saying what, 1000-1500

words? So his vocabulary being only about 3.5% of what it should be

is just fine, nothing to worry about? You'd think so hearing

everyone around me talk. I was " jumping the gun " when we had him

evaluated at 26 months by Early Intervention, even though I'd been

wanting to do it since 17 months. When he was approved for speech

therapy, then it was " Oh, well, he'll talk when he's ready " . He has

made very little progress, and the ST, myself, and his caseworker

are all certain he has verbal apraxia. I made an appt with a

pediatric nuerologist, he is having the tests done next week. In

addition I scheduled him to have a full speech-language evaluation

today at the local university's speech clinic. My son got sick over

the weekend, so we had to postpone the appointment. My husband's

reaction? " Thats fine, I didn't think we needed to do that anyways.

I think you should just wait and see if the neurologists tests come

back with anything. " A few days ago he made a comment about how our

son " Is stubborn, he just doesn't want to talk " . The kicker? My

husband is a pediatric nurse practitioner. If anyone should be able

to look at this situation and say hey, something isn't right, it

should be him. In anyone else's child he could see it, but with our

own its like he's sticking his head in the sand and pretending there

isn't a problem, just like his family is doing. I can handle those

types of comments from friends and aquaintances(gosh knows I'm used

to it), but from husband and family its killing me, and making me

more determined to get the evaluation and finally a diagnosis made.

We have no local support group here, and it feels like I am doing

this totally alone, because no one else seems to understand or want

to admit there is a problem. He should be having his evalution/IEP

meeting with the school system in July, and I plan to go in armed to

the teeth with info to make sure he gets the amount of speech

therapy he needs. I'd love to while away the days in denial too, but

someone has to advocate for my son. Why are they making me feel like

I am the in the wrong here?? Sara (who is feeling very stressed,

tired, and defeated today.)