Re: family-denial-long

[Guest guest]

Hi Tina

I had a hard time axplaining my sons apraxia to my mother-in-law also and

his sensory integration issues also

have you given her the Late talker book? I know it help me to understand

why my son was the way he is It may help her it understand what is going on

with your son.

hope this help

Jean

[ ] family-denial-long

> Hello to everyone:

> Have any of you had the trouble of family members being in denial

> that your child has apraxia and sensory integration dysfunction? I

> have an out of state mother-in-law that I really like and usually

> get along with just fine, but here lately I find myself telling her

> over and over what apraxia is. She asks me lots of questions like

> do you think therapy is helping? Do you even think he has a speech

> problem? Is he going to outgrow this? Just on and on. I have

> answered her many times over and over. Recently I took Landon off

> Fishoil because I thought it was interfering with his appetite.

> That was a huge mistake for his sensory issues. I quickly put him

> back on, but he is still not where he was sensory wise before I took

> him off, so the days have been a little hectic lately. This shall

> pass, but in the mean time she asked me how he was doing. I said

> well he has some sensory behavior that I am trying to get under

> control. She doesn't have a clue as to what sensory issues are. I

> have explained this to her also, but it isn't sinking in. She

> thinks his sensory issues are normal two year old behavior. I

> reminded her that while he is on fishoil, he can manage his sensory

> issues much better. While was off the fishoil, he was a mess. Over

> and over I stated, if he doesn't have sensory issues then why could

> he function on fishoil, but he can't when he isn't on it. That

> didn't change her mind any either. I am to the point that I am

> getting defensive and mad and frustrated. I just don't know what

> else to do with her. She shows she is interested in knowing what is

> going on with Landon, but then when I tell her, she tries to tell me

> there is no such thing and this normal behavior or he is just a

> spoiled brat, etc.

>

> Any advice on how to handle this situation would be greatly

> appreciated. I would like to handle it in a kind, non-

> confrontational way, and in a way that she doesn't feel like I am

> attacking her.

>

> Thanks

> Tina

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Tina-

I've been there! It has been hard for me to deal with my parents'

denial of my own children's diagnoses (my older child has ASD and my

younger has ASD and apraxia). Only in the past six months, since my

children have improved so drastically, have my parents showed less

resistance to the dx. As their fears about the future have decreased,

their ability to look at my children's areas of difficulty objectively

has increased.

This is how I think about it. It is very stressful to hear a

developmental disorder dx for a child you love. This is true for

grandparents, aunts, uncles, etc., not just parents. Many go through a

grieving process, and denial is a normal part of that grieving

process. I think one of the reasons that divorce rates are so high

(more than 90%) in families of children with ASD is that the parents

go through this process at different rates, that is, one parent is

still in denial and the other is in a different stage, so they fight a

lot and cannot relate to how the other is feeling. Since your MIL

isn't with him all the time, it is even easier for her to stay stuck

in that denial stage. How could there be something wrong with her

perfect grandson? Even though her denial is hard on you, I suggest

trying to have some empathy for this person who loves Landon also. She

is obviously anxious about what the future holds for him, and wants to

believe all will be fine for him.

I don't think you can convince your MIL that the dx is correct. As she

spends more time with him and has more time to deal with the dx, she

may come to accept it better. I wouldn't argue with her about it or

take what she says personally. Maybe she is coping the best she can?

Also keep in mind that when your MIL had young children, these types

of disorders were fairly rare, and that may also play a part in her

lack of willingness to accept it.

take care,

>

> Hello to everyone:

> Have any of you had the trouble of family members being in denial

> that your child has apraxia and sensory integration dysfunction? I

> have an out of state mother-in-law that I really like and usually

> get along with just fine, but here lately I find myself telling her

> over and over what apraxia is. She asks me lots of questions like

> do you think therapy is helping? Do you even think he has a speech

> problem? Is he going to outgrow this? Just on and on. I have

> answered her many times over and over. Recently I took Landon off

> Fishoil because I thought it was interfering with his appetite.

> That was a huge mistake for his sensory issues. I quickly put him

> back on, but he is still not where he was sensory wise before I took

> him off, so the days have been a little hectic lately. This shall

> pass, but in the mean time she asked me how he was doing. I said

> well he has some sensory behavior that I am trying to get under

> control. She doesn't have a clue as to what sensory issues are. I

> have explained this to her also, but it isn't sinking in. She

> thinks his sensory issues are normal two year old behavior. I

> reminded her that while he is on fishoil, he can manage his sensory

> issues much better. While was off the fishoil, he was a mess. Over

> and over I stated, if he doesn't have sensory issues then why could

> he function on fishoil, but he can't when he isn't on it. That

> didn't change her mind any either. I am to the point that I am

> getting defensive and mad and frustrated. I just don't know what

> else to do with her. She shows she is interested in knowing what is

> going on with Landon, but then when I tell her, she tries to tell me

> there is no such thing and this normal behavior or he is just a

> spoiled brat, etc.

>

> Any advice on how to handle this situation would be greatly

> appreciated. I would like to handle it in a kind, non-

> confrontational way, and in a way that she doesn't feel like I am

> attacking her.

>

> Thanks

> Tina

>

[Guest guest]

Tina,

The suggestion of reading the Late Talker is a good one; also, if she has

access to the internet. Just have her look up Apraxia and Sensory

Integration Dysfunction and she can read all this herself and realize it

may not very well be typical behavior for a 2yr old! The internet has been

a huge eye-opener for me. My mother asks me all the same questions as your

mother-in-law and I try to break it down to her as simply as I can but

sometimes I do lose my temper because she is expecting a fast and complete

recovery and I try to tell her we have a long road ahead of us....It's

difficult for them to accept that their grandchildren are not as they

wished them to be..In my opinion, my son provides us with more joy than all

of my nieces put together....every little thing he accomplishes is a

really big deal and he is so happy; all the time.

Hang in there,

Myra

" jean hilliker "

<jhilliker@...>

< >

Sent by: cc:

@yaho Subject: Re:

[ ] family-denial-long

ogroups.com

03/03/2006 12:31 PM

Please respond to

Hi Tina

I had a hard time axplaining my sons apraxia to my mother-in-law also and

his sensory integration issues also

have you given her the Late talker book? I know it help me to understand

why my son was the way he is It may help her it understand what is going

on

with your son.

hope this help

Jean

[ ] family-denial-long

> Hello to everyone:

> Have any of you had the trouble of family members being in denial

> that your child has apraxia and sensory integration dysfunction? I

> have an out of state mother-in-law that I really like and usually

> get along with just fine, but here lately I find myself telling her

> over and over what apraxia is. She asks me lots of questions like

> do you think therapy is helping? Do you even think he has a speech

> problem? Is he going to outgrow this? Just on and on. I have

> answered her many times over and over. Recently I took Landon off

> Fishoil because I thought it was interfering with his appetite.

> That was a huge mistake for his sensory issues. I quickly put him

> back on, but he is still not where he was sensory wise before I took

> him off, so the days have been a little hectic lately. This shall

> pass, but in the mean time she asked me how he was doing. I said

> well he has some sensory behavior that I am trying to get under

> control. She doesn't have a clue as to what sensory issues are. I

> have explained this to her also, but it isn't sinking in. She

> thinks his sensory issues are normal two year old behavior. I

> reminded her that while he is on fishoil, he can manage his sensory

> issues much better. While was off the fishoil, he was a mess. Over

> and over I stated, if he doesn't have sensory issues then why could

> he function on fishoil, but he can't when he isn't on it. That

> didn't change her mind any either. I am to the point that I am

> getting defensive and mad and frustrated. I just don't know what

> else to do with her. She shows she is interested in knowing what is

> going on with Landon, but then when I tell her, she tries to tell me

> there is no such thing and this normal behavior or he is just a

> spoiled brat, etc.

>

> Any advice on how to handle this situation would be greatly

> appreciated. I would like to handle it in a kind, non-

> confrontational way, and in a way that she doesn't feel like I am

> attacking her.

>

> Thanks

> Tina

>

>

>

>

>

>

>

>

>

[Guest guest]

My youngest is 33 months old now. He doesn't really have any

meaningful speach but he's trying. My mom got so excited when he

very quietly said " No " to her question. He's only said a clear " No "

about three times in his life! My other children ages 6, 8, and 9

sometimes complain our youngest gets all the attention. I try to

explain that their younger brother is very smart but he can't

communicate with ease like they can so he gets frustrated and he is

clingy and cries a lot. I tell them he needs even more attention so

he can learn to talk. I keep explanations simple. Since your MIL

lives out of state and you have explained your child's situation I

would just not bring it up/keep it brief/change the subject/agree

with her and let it drop. My MIL says my son will " talk when he

wants to... " and I just smile and agree with her and move on!

Sincerely,

Debra

[Guest guest]

Hi Tina, I have found getting people to read about apraxia is better than

trying to explain it over and over. " The Late Talker " book is wonderful

for this purpose. Also, there are tons and tons of articles on the

internet...just Google " apraxia " . Good luck with this one....sometimes

you just have to say, " I don't know what else to say. " Fay, Damon's

Grandmother

[Guest guest]

Hi Tina!

In one way or another we all went through this. Actually some of us

like me went through it with our spouse at some point -like after

first time diagnosis. I can tell you that the older the child is,

the more inclined people are to listen. I can also tell you that

questioning the diagnosis isn't a bad thing and in moderation can

even be a good thing. 's son Khalid who is now excelling in

college (can you believe it?!) credits his Dad's inability to ever fully

accept his diagnosis as something that would prevent him from

talking, walking, being a successful athlete, student,

citizen helped...that push and not letting the apraxia be used by Khalid as

an excuse for anything. babied him, while Mousa gently pushed

him -yin and yang. Too much of either wouldn't be great. Together

however they loved and encouraged and helped him to become the

amazing adult he is today. One who as an adult still has apraxia -

but has learned to overcome.

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

Ironically from where you are today I can tell you the tables will

probably turn at some point and there will be a day not too far in

the future when your child is a wee bit older and you'll long to

hear people saying " oh he's just fine what are you talking about?! "

And the day you'll want to hear this is the day you want to stand on

a mountain top and scream about the success of your child who for

the first time just said a " FULL SENTENCE! " like " I doe too "

and while you actually at that one moment just want to hear the

words " See?! I told you he doesn't have a speech problem! " suddenly

all the " just give him timers " turn into you today-and at that

moment -that's when they'll want to talk about therapy, apraxia,

or say " yes that's great, but will he ever talk like everyone else? "

With time...all will be on the same page. The child is not just a

late talker, but...because he (or she) has such amazing family

around for support -he (or she) 'is' going to be just fine, and will

learn to overcome and even succeed... (Just like your mother in law

said! So she is right even though you don't want to hear that yet

I'm sure!) At that point, at least for me anyway, there will no

longer be any anger. You may joke about what is going on now, but

probably not because the memories are not sweet, they are

bittersweet. And one strong lesson from this whole thing is

learning that being right isn't always a good thing, and at that

moment you'll understand where they came from way back then. (or in

your case -the where your Mother in Law is coming from now)

The journey of course never ends, but it's all part of life. Time

helps make the road already journeyed easier to understand. Even

smile about.

Did your MIL read The Late Talker?

=====

[Guest guest]

There is definitely a back and forth to all of this that, for me, is

probably the most anxiety-producing part of having a child struggling to move

from

having issues to fititng in more easily with those deemed typical. We have had

a lot of testing done over the past month, as well as meeting with teachers

and planning for where to place for K next year. One week we met with

a dyslexia school and felt, along with the administrator doing the testing

there, that it would be the best match for him - multisensory learning, small

classes (1-9 ratio) and, perhaps most importantly, an understanding that T

will learn differently than the other kids and will need more time for motor

planning issues. A week later, we met with the principal and K teacher at the

small, catholic private school that he now attends. They have both been

watching him in his pre-K classroom and read all the reports we provided about

him.

The principal was previously the K teacher there for 20 years. They feel

he'll do fine next year in the K classroom, and kept stressing how well he

blends

with the other kids. They'll work around his motor skills delays, and were

extremely encouraging. When I mentioned that the dev ped had assured us that

he would go on to college and lead a normal life, they replied, " of course " in

unison. So that was gratifying, but then, of course, it flip flopped back to

his OT who really wants to do a class visit to the K classroom because she's

not sure how he'll stay focused and manage to keep up with everyone else. As

she said, " He's smart and he'll know he can't always do things the same

way. " Last week, when I observed him in speech therapy (behind mirrored glass)

I

was incredibly proud of how well he worked with his partner - actually

saying, " GREAT JOB, AZRO " in the sweetest, most enthusiastic way when his

partner

did well - but I was also accutely aware that he knew, just as anyone looking

on would now, that Azro's ability to do certain things like put together a

puzzle (a " reward " to do in between speech assignments) was much more advanced.

At one point he said, almost as if looking for reassurance, " This is hard,

isn't it Azro? " Azro just said, " Look at the colors, , and try to match

the pieces. " So there is this constant ebb and flow between - fabulous, you

did X, and Oh, gee, there are still differences and how will they impact my

little guy not only today, but in the long run - and how do I keep the best part

of him safe. Do I go with safe and multisensory or do I go with typical

classroom, typical peers, and hand him over hoping for the best.

On an up note, I'm happy to shout from the roof tops that finally

seems able to draw a real person with very decent head, eyes (circles, no less),

nose, smiley face, hair, a body that is a T with hands and an extra leg drawn

in. All this in the past two weeks.

In a message dated 3/3/2006 9:44:55 PM Pacific Standard Time,

kiddietalk@... writes:

Hi Tina!

In one way or another we all went through this. Actually some of us

like me went through it with our spouse at some point -like after

first time diagnosis. I can tell you that the older the child is,

the more inclined people are to listen. I can also tell you that

questioning the diagnosis isn't a bad thing and in moderation can

even be a good thing. 's son Khalid who is now excelling in

college (can you believe it?!) credits his Dad's inability to ever fully

accept his diagnosis as something that would prevent him from

talking, walking, being a successful athlete, student,

citizen helped...that push and not letting the apraxia be used by Khalid as

an excuse for anything. babied him, while Mousa gently pushed

him -yin and yang. Too much of either wouldn't be great. Together

however they loved and encouraged and helped him to become the

amazing adult he is today. One who as an adult still has apraxia -

but has learned to overcome.

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

Ironically from where you are today I can tell you the tables will

probably turn at some point and there will be a day not too far in

the future when your child is a wee bit older and you'll long to

hear people saying " oh he's just fine what are you talking about?! "

And the day you'll want to hear this is the day you want to stand on

a mountain top and scream about the success of your child who for

the first time just said a " FULL SENTENCE! " like " I doe too "

and while you actually at that one moment just want to hear the

words " See?! I told you he doesn't have a speech problem! " suddenly

all the " just give him timers " turn into you today-and at that

moment -that's when they'll want to talk about therapy, apraxia,

or say " yes that's great, but will he ever talk like everyone else? "

With time...all will be on the same page. The child is not just a

late talker, but...because he (or she) has such amazing family

around for support -he (or she) 'is' going to be just fine, and will

learn to overcome and even succeed... (Just like your mother in law

said! So she is right even though you don't want to hear that yet

I'm sure!) At that point, at least for me anyway, there will no

longer be any anger. You may joke about what is going on now, but

probably not because the memories are not sweet, they are

bittersweet. And one strong lesson from this whole thing is

learning that being right isn't always a good thing, and at that

moment you'll understand where they came from way back then. (or in

your case -the where your Mother in Law is coming from now)

The journey of course never ends, but it's all part of life. Time

helps make the road already journeyed easier to understand. Even

smile about.

Did your MIL read The Late Talker?

========= Geng

President CHERAB Foundation

Communication Help, Education, Research, Apraxia Base

http://www.cherab.org

http://www.speech-express.com/boards

cherab

Co Founder Speechville

http://www.speechville.com

772-335-5135

" Help give our cherubs a smile and a voice "

>

> Hello to everyone:

> Have any of you had the trouble of family members being in denial

> that your child has apraxia and sensory integration dysfunction?

I

> have an out of state mother-in-law that I really like and usually

> get along with just fine, but here lately I find myself telling

her

> over and over what apraxia is. She asks me lots of questions like

> do you think therapy is helping? Do you even think he has a

speech

> problem? Is he going to outgrow this? Just on and on. I have

> answered her many times over and over. Recently I took Landon off

> Fishoil because I thought it was interfering with his appetite.

> That was a huge mistake for his sensory issues. I quickly put him

> back on, but he is still not where he was sensory wise before I

took

> him off, so the days have been a little hectic lately. This shall

> pass, but in the mean time she asked me how he was doing. I said

> well he has some sensory behavior that I am trying to get under

> control. She doesn't have a clue as to what sensory issues are.

I

> have explained this to her also, but it isn't sinking in. She

> thinks his sensory issues are normal two year old behavior. I

> reminded her that while he is on fishoil, he can manage his

sensory

> issues much better. While was off the fishoil, he was a mess.

Over

> and over I stated, if he doesn't have sensory issues then why

could

> he function on fishoil, but he can't when he isn't on it. That

> didn't change her mind any either. I am to the point that I am

> getting defensive and mad and frustrated. I just don't know what

> else to do with her. She shows she is interested in knowing what

is

> going on with Landon, but then when I tell her, she tries to tell

me

> there is no such thing and this normal behavior or he is just a

> spoiled brat, etc.

>

> Any advice on how to handle this situation would be greatly

> appreciated. I would like to handle it in a kind, non-

> confrontational way, and in a way that she doesn't feel like I am

> attacking her.

>

> Thanks

> Tina

>

[Guest guest]

Thank you all for your input. I am going to buy her some books.

She is about to have a knee replacement so she will have plenty of

bed time to read! She is a very complicated person to deal with at

times. She mostly sees black and white. So maybe her reading about

it will help her understand Landon better. I just want her to get

to know Landon for who he is and not who she thinks he is. And I

often worry about her showing favortism for the older non-apraxic

child because she thinks Landon is just a normal spoiled brat. I

think as most of you have said, she will come around after she fully

understands the situation.

Thanks so much to all of you. I feel so much better knowing I am

not alone with this situation.

Tina

>

> Hello to everyone:

> Have any of you had the trouble of family members being in denial

> that your child has apraxia and sensory integration dysfunction?

I

> have an out of state mother-in-law that I really like and usually

> get along with just fine, but here lately I find myself telling

her

> over and over what apraxia is. She asks me lots of questions like

> do you think therapy is helping? Do you even think he has a

speech

> problem? Is he going to outgrow this? Just on and on. I have

> answered her many times over and over. Recently I took Landon off

> Fishoil because I thought it was interfering with his appetite.

> That was a huge mistake for his sensory issues. I quickly put him

> back on, but he is still not where he was sensory wise before I

took

> him off, so the days have been a little hectic lately. This shall

> pass, but in the mean time she asked me how he was doing. I said

> well he has some sensory behavior that I am trying to get under

> control. She doesn't have a clue as to what sensory issues are.

I

> have explained this to her also, but it isn't sinking in. She

> thinks his sensory issues are normal two year old behavior. I

> reminded her that while he is on fishoil, he can manage his

sensory

> issues much better. While was off the fishoil, he was a mess.

Over

> and over I stated, if he doesn't have sensory issues then why

could

> he function on fishoil, but he can't when he isn't on it. That

> didn't change her mind any either. I am to the point that I am

> getting defensive and mad and frustrated. I just don't know what

> else to do with her. She shows she is interested in knowing what

is

> going on with Landon, but then when I tell her, she tries to tell

me

> there is no such thing and this normal behavior or he is just a

> spoiled brat, etc.

>

> Any advice on how to handle this situation would be greatly

> appreciated. I would like to handle it in a kind, non-

> confrontational way, and in a way that she doesn't feel like I am

> attacking her.

>

> Thanks

> Tina

>

[Guest guest]

Hi Tina,

It can be so upsetting when family members seem not to see what is

so obvious to you as a mother. There were members of my family who

were in denial in the beginning, (even my husband at first!) even

when I had an " official " diagnosis. I just tried to consider the

source. At first I tried to educate them, but then realized I was

wasting my energy, and would come away feeling more frustrated that

they did not understand. I chose to focus my energy on CJ's

treatment. I found that as CJ signed more and communicated, as well

as started to improve with the therapies (9 a week for awhile), that

some family members " got it " , and others chose to continue believing

that he was just ready to talk. It didn't matter to me at that

point, as long as he was treated with love, and it was never

discussed in front of him. CJ was (is) lucky enough to have older

sibs who would sign with him and interpret for my MIL & others.

Honestly, although I think the books and website are a terrific

idea, do not be too upset if it doesn't change her opinion. My MIL

wasn't interested in any of it. Just continue to know in your heart

what is right for your son, and do it. Your job is not to convince

her, only to be there for him, as you know:-). If you really are

set on talking to her about it, what about your husband trying it?

I know that there were times where my MIL would stop questioning if

my husband answered her (you know how they can say things that

daughter-in-laws cannot!)

What ended up working for me was whenever my MIL asked how CJ was

doing, I would just happily answer that he was working hard and we

were really proud of him. I learned that getting into all of the

explanations did nothing to change opinions (not that you shouldn't

try at first), and that keeping things simple was the easiest way to

keep the negative energy from getting to me. I matter-of-factly

did interventions and signed/brushed/prompted without explaining

myself, and when I was questioned about it, would answer with

conviction, and not leave the door open for debate. It worked for

us. The questioning stopped and they focused more on him. And yes,

now that the average person would never pick up that CJ has

SID/apraxia, they believe that he just decided to start talking, but

I don't care. The fact is, he IS talking, and that is what matters

to me. We know what it took to get there, and what it still takes

to keep him there, and that is what matters.

If you MIL continues to pepper you with questions, refering her to

the books and websites with a simple, " The book/site explains it

some much better than I can. I am sure you would find it

interesting. " OR depending upon her personality, play into her need

to be involved by asking her to read the book & go to the sites on

the premise of wanting her feedback. I did not use that approach

b/c my MIL would not have read the book and doesn't go on the

computer, and I didn't want her opinion, LOL!

I hope this helps,

in PA

[Guest guest]

> And yes,

> now that the average person would never pick up that CJ has

> SID/apraxia, they believe that he just decided to start talking,

>but

> I don't care. The fact is, he IS talking, and that is what

matters

> to me. We know what it took to get there, and what it still takes

> to keep him there, and that is what matters.

>

But isn't this so frustrating? All the work (and time and money and

anxiety) that the child and family put into it, and people continue

to believe they just decided to start talking (which implies they

had been just refusing to before)! It's important to me to make

sure our close family and friends understand that Meg has a

neurological condition that she constantly works hard to overcome,

and that she's not lazy or unintelligent. Usually a person who

overcomes a disability is admired, but frequently people just brush

off our children's accomplishments thinking they must just be slow

to develop.

Meg's first EI therapist did this to us. Even though our private

therapist was saying she thought Meg had apraxia, this therapist was

skeptical. When we met with her for a follow up a month after our

final visit, I told her about all the new words Meg was saying. Her

response was " See, I told you she was just a late talker and she'd

start talking when she wanted to! " I wanted to strangle her. After

5 months of 4 days per week therapy, constant practice at home, fish

oils and carn-aware? Anyway, I know I need to let it go, but it's

definitely something I struggle with.

Kerri