Re: discussing SGA with ignorant people

[Guest guest]

nne -

Oh, I smiled at some scenarios and my heart ached at the last. Here

are my suggestions.

Scenario 1: Total strangers coming up to us on a daily basis and

> they say " She is sooooo small! " JEN: I think you are answering

it just fine. Strangers don't need an explanation. Your smile and

openess is enough. If you are sitting at a park, and you feel as if

the conversation can extend, then you can go on and give Scenario #2

info. Other than that, " yes she is " is just fine.

Scenario 2 & 3: You are right; you need to ensure that your

friends, especially, understand that Mia is not " just little. " She

has a congenital growth disorder that causes her to be too short and

struggle to gain weight, along with some other medical issues (if

there is time, you can expound). Without treatment, she will be far

below where she should be based on you and your husband, as well as

some other medical issues could get worse. "

You can explain, if need be, that children who are born with IUGR

and SGA and don't catch up like Mia -- that they run much higher

risks of cardiovascular issues, type 2 diabetes, insulin resistance

and other health issues as adults.

For that MEAN lady, you can respond, if possible without killing

her " without PT, she won't be able to be a normal little kid. " Then

you can even respond with something like " I'd be happy to explain

all the different health issues that Mia faces if you want to come

over sometime. "

I think that people see the SHORT CHILD -- they simply don't realize

all the other (*#$(#$ that we deal with as parents, that our

children face every day. I have struggled with this as has

gotten so tall.

Friends' parents think I am overreacting -- is doing so

well, she is the tallest in her class -- why do we still have to go

to NY all the time; etc. They just don't get it.

I wish I could hug you!!! Jenn

>

> I have a question on how to respond to people who ask me why Mia

is

> so small. Here are the 3 senario's I encounter the most:

>

> Scenario 1: Total strangers coming up to us on a daily basis and

> they say " She is sooooo small! " I usually just smile and

say " Yes,

> she is! "

>

> Scenerio 2: Friends/people I barely know saying " Why is she so

> small? " Do I go into the whole explanation of SGA? Do I say she

> has a growth disorder? What is an easy, quick explanation? (I

know

> I don't have to explain anything at all but usually people inquire

> because they mean well, or are concerned)

>

> Scenerio 3: Some friends/family/neighbors know Mia has had a lot

of

> tests, therapy and a recent visit to Dr. H in New York. They all

> want to know what is going on. When I explain that Mia does not

> have RSS but has SGA and I explain a little what SGA is they

> say " Oh, so she is just little " .

>

> Meanest scenerio: I was at the bus stop to pick up my other kids

> from school one day last year and the bus was a little late. I

made

> a comment (in front of a few people) that I wish the bus would

hurry

> because Mia has PT. A " friend " said " When are you going to stop

> with all these doctor appts. and therapy and let her be a normal

> little kid? " I turned and got into the car with my kids and drove

> Mia to PT, crying the whole way (under my sunglasses so the kids

> couldn't see). Things like this are very hurtful. I do the best

to

> make Mia be her best and people like this make these flip, hurtful

> comments that I remember forever.

>

> Anyway, thanks for reading this.

> nne (Mia's mom!!)

[Guest guest]

Hi!

I actually got my practice with these people with my son who

is now 5. He had severe hypotonia and didn't walk until 26ish months

(and we think it takes our RSS/SGA kids long!) He actually used a

walker for several months and the first day I brought him to daycare

and let him walk down the hall by himself all the parents waiting for

the preschool to open who normally said hi were all silent and having

trouble making eye contact..I could see their thoughts written on

their faces, " Can I look " , " will the mother mind if I look " , " what if

that was my child " , " what can I do that won't upset the parent " . I

had decided that I was the one who had to be comfortable with my son

the way he was so everyone else could too. So I called out " hey

everyone! watch out as he doesnt' have a driver's license yet "

accompanied by crashing intot he wall (he had a little

steering problem)! And it was okay, I think everyone felt I had

given them permission to look and ask questions.

So, when Emerence was diagnosed SGA, poss mild RSS I turned into a

informational machine. Emerence looks a LOT like Dora the Explorer

so we get a lot of comments that always include, wow she is SMALL for

2! So I use it as an education opportunity - we can help get other

kids diagnosed! So I tell people she has a rare growth disorder that

makes her not only short but prone to a host of other

complications. I carry copies of the SGA/RSS pamplets and hand them

out. I provide all of her doctors and dentist with copies of the

MAGIC foundations annual convention package to give to other

patients. Her local ER has the flyers stapled to her medical records

and everytime we go to the ER I make sure I talk to the drs about

RSS/SGA so that they NEXT child they see with some of these signs

rings an immediate bell. I always tell people if they know soemone

with an unusually small child or baby (and the dr. isnt' doing

anything) who isn't growing to call me/check out the magic

foundation!

As far as your " friend " we all have them and they just do NOT get

it. Why we visit the drs/er frequently, why we panic when our kids

have a bad eating day (their kids probably go through tons of food a

day and they just have NO clue) and why we obsess over ounces rather

than pounds. I tell people that for Emerence to have a HEALTHY and

HAPPY childhood and life I need to make sure she gets the help she

needs, be it PT and or OT or ST or .....(fill in the blank! )

People don't realize how exhausting the schedule can be

either...medication schedules, Emme has PT 2x a week at home before I

go to work (fulltime), OT 2x a month during lunch at daycare, an

endo, a genetecist, ENT, ortho...not to mention her primary care!

And I am well aware I have it easy compared to most of you!!!!!!!

Try not to let them bother you and know that YOU ARE DOING THE RIGHT

THING!

My approach may not work for everyone but do what you feel

comfortable with, do not feel bad and remember you know best!

On the sad sign, Emerence went to her endo and she lost 7 ounces in 1

week!!!!

, mom to 5 and Emerence, 31 " , 19lb 4 oz SGA, poss RSS

>

> I have a question on how to respond to people who ask me why Mia is

> so small. Here are the 3 senario's I encounter the most:

>

> Scenario 1: Total strangers coming up to us on a daily basis and

> they say " She is sooooo small! " I usually just smile and say " Yes,

> she is! "

>

> Scenerio 2: Friends/people I barely know saying " Why is she so

> small? " Do I go into the whole explanation of SGA? Do I say she

> has a growth disorder? What is an easy, quick explanation? (I know

> I don't have to explain anything at all but usually people inquire

> because they mean well, or are concerned)

>

> Scenerio 3: Some friends/family/neighbors know Mia has had a lot

of

> tests, therapy and a recent visit to Dr. H in New York. They all

> want to know what is going on. When I explain that Mia does not

> have RSS but has SGA and I explain a little what SGA is they

> say " Oh, so she is just little " .

>

> Meanest scenerio: I was at the bus stop to pick up my other kids

> from school one day last year and the bus was a little late. I

made

> a comment (in front of a few people) that I wish the bus would

hurry

> because Mia has PT. A " friend " said " When are you going to stop

> with all these doctor appts. and therapy and let her be a normal

> little kid? " I turned and got into the car with my kids and drove

> Mia to PT, crying the whole way (under my sunglasses so the kids

> couldn't see). Things like this are very hurtful. I do the best

to

> make Mia be her best and people like this make these flip, hurtful

> comments that I remember forever.

>

> Anyway, thanks for reading this.

> nne (Mia's mom!!)

[Guest guest]

...your post is scaring me (kidding) as we are STILL waiting for

LeeAnn to get home.

Off topic a bit, but the last LeeAnn update said she eats many things

and " is very healthy, however has RSS and is very small " . Is it

POSSIBLE to hope she is doesn't need any meds right now? Should I be

worried that they are missing things?

Thank you!

Re: discussing SGA with ignorant people

Hi!

I actually got my practice with these people with my son who

is now 5. He had severe hypotonia and didn't walk until 26ish months

(and we think it takes our RSS/SGA kids long!) He actually used a

walker for several months and the first day I brought him to daycare

and let him walk down the hall by himself all the parents waiting for

the preschool to open who normally said hi were all silent and having

trouble making eye contact..I could see their thoughts written on

their faces, " Can I look " , " will the mother mind if I look " , " what if

that was my child " , " what can I do that won't upset the parent " . I

had decided that I was the one who had to be comfortable with my son

the way he was so everyone else could too. So I called out " hey

everyone! watch out as he doesnt' have a driver's license yet "

accompanied by crashing intot he wall (he had a little

steering problem)! And it was okay, I think everyone felt I had

given them permission to look and ask questions.

So, when Emerence was diagnosed SGA, poss mild RSS I turned into a

informational machine. Emerence looks a LOT like Dora the Explorer

so we get a lot of comments that always include, wow she is SMALL for

2! So I use it as an education opportunity - we can help get other

kids diagnosed! So I tell people she has a rare growth disorder that

makes her not only short but prone to a host of other

complications. I carry copies of the SGA/RSS pamplets and hand them

out. I provide all of her doctors and dentist with copies of the

MAGIC foundations annual convention package to give to other

patients. Her local ER has the flyers stapled to her medical records

and everytime we go to the ER I make sure I talk to the drs about

RSS/SGA so that they NEXT child they see with some of these signs

rings an immediate bell. I always tell people if they know soemone

with an unusually small child or baby (and the dr. isnt' doing

anything) who isn't growing to call me/check out the magic

foundation!

As far as your " friend " we all have them and they just do NOT get

it. Why we visit the drs/er frequently, why we panic when our kids

have a bad eating day (their kids probably go through tons of food a

day and they just have NO clue) and why we obsess over ounces rather

than pounds. I tell people that for Emerence to have a HEALTHY and

HAPPY childhood and life I need to make sure she gets the help she

needs, be it PT and or OT or ST or .....(fill in the blank! )

People don't realize how exhausting the schedule can be

either...medication schedules, Emme has PT 2x a week at home before I

go to work (fulltime), OT 2x a month during lunch at daycare, an

endo, a genetecist, ENT, ortho...not to mention her primary care!

And I am well aware I have it easy compared to most of you!!!!!!!

Try not to let them bother you and know that YOU ARE DOING THE RIGHT

THING!

My approach may not work for everyone but do what you feel

comfortable with, do not feel bad and remember you know best!

On the sad sign, Emerence went to her endo and she lost 7 ounces in 1

week!!!!

, mom to 5 and Emerence, 31 " , 19lb 4 oz SGA, poss RSS

>

> I have a question on how to respond to people who ask me why Mia is

> so small. Here are the 3 senario's I encounter the most:

>

> Scenario 1: Total strangers coming up to us on a daily basis and

> they say " She is sooooo small! " I usually just smile and say " Yes,

> she is! "

>

> Scenerio 2: Friends/people I barely know saying " Why is she so

> small? " Do I go into the whole explanation of SGA? Do I say she

> has a growth disorder? What is an easy, quick explanation? (I know

> I don't have to explain anything at all but usually people inquire

> because they mean well, or are concerned)

>

> Scenerio 3: Some friends/family/neighbors know Mia has had a lot

of

> tests, therapy and a recent visit to Dr. H in New York. They all

> want to know what is going on. When I explain that Mia does not

> have RSS but has SGA and I explain a little what SGA is they

> say " Oh, so she is just little " .

>

> Meanest scenerio: I was at the bus stop to pick up my other kids

> from school one day last year and the bus was a little late. I

made

> a comment (in front of a few people) that I wish the bus would

hurry

> because Mia has PT. A " friend " said " When are you going to stop

> with all these doctor appts. and therapy and let her be a normal

> little kid? " I turned and got into the car with my kids and drove

> Mia to PT, crying the whole way (under my sunglasses so the kids

> couldn't see). Things like this are very hurtful. I do the best

to

> make Mia be her best and people like this make these flip, hurtful

> comments that I remember forever.

>

> Anyway, thanks for reading this.

> nne (Mia's mom!!)

[Guest guest]

nne,

You have had some excellent advice on how to handle these

situations. The only extra thing I can offer you is that while it

hurts so much now and you think you will never get over the pain it

brings up, I promise you that you will. As Mia gets older and you

move onto other things, you will find that the hurt does dull a

bit. It's hard to believe now, but it will happen.

There are still times when I get comments from people about Max. He

is 16, but he looks more like 13. He hates the comments, but we are

so happy about it! We never thought he would make it to 5'2 " , we

never thought he would be so successful in school (He is in all

replacement classes, but who cares? He is happy and thriving.). We

have learned how to talk back to ignorant people in a nice way and

it really does not hurt like it used to. I get more frustrated than

anything else. It's like enough already!

Jodi Z

[Guest guest]

Hi. I feel for you. We go through the same comments with Autumn, 13

mos. People just can't believe how old she is. When they start

commenting relentlessly on her size, I've said either that she has a

syndrome or a disorder then most of them end up feeling pretty bad

about their comments. I don't really elaborate anymore unless they

are really interested, and when I do, then i hear the same

thing, " oh, so she'll just be small, and hey, she's a girl so it's no

big deal " or even " she'll be happy being skinny when she's older "

but it is a big deal. These people don't see or understand all the

work that goes on behind the scenes, and they never will. It's

frustrating, comments do hurt and most of the time i feel pretty

alone with this, but at least we can come to this listserve where

everyone is on the same team.

I don't know why 'friends' make the comments they do and I am sorry

you have to listen to them. They are unnessesary and hurtful and

most of all they come from someone who obviously is in no position to

make that comment.

mom to Autumn 13 mos

>

> I have a question on how to respond to people who ask me why Mia is

> so small. Here are the 3 senario's I encounter the most:

>

> Scenario 1: Total strangers coming up to us on a daily basis and

> they say " She is sooooo small! " I usually just smile and say " Yes,

> she is! "

>

> Scenerio 2: Friends/people I barely know saying " Why is she so

> small? " Do I go into the whole explanation of SGA? Do I say she

> has a growth disorder? What is an easy, quick explanation? (I know

> I don't have to explain anything at all but usually people inquire

> because they mean well, or are concerned)

>

> Scenerio 3: Some friends/family/neighbors know Mia has had a lot

of

> tests, therapy and a recent visit to Dr. H in New York. They all

> want to know what is going on. When I explain that Mia does not

> have RSS but has SGA and I explain a little what SGA is they

> say " Oh, so she is just little " .

>

> Meanest scenerio: I was at the bus stop to pick up my other kids

> from school one day last year and the bus was a little late. I

made

> a comment (in front of a few people) that I wish the bus would

hurry

> because Mia has PT. A " friend " said " When are you going to stop

> with all these doctor appts. and therapy and let her be a normal

> little kid? " I turned and got into the car with my kids and drove

> Mia to PT, crying the whole way (under my sunglasses so the kids

> couldn't see). Things like this are very hurtful. I do the best

to

> make Mia be her best and people like this make these flip, hurtful

> comments that I remember forever.

>

> Anyway, thanks for reading this.

> nne (Mia's mom!!)

[Guest guest]

nne-

We encountered this on Sunday when Art and I took Isaac to IHOP. We

asked for a highchair and the waitress came over and said " Oh he is

so cute..how old? " When I said 13 months she looked very puzzled and

said " really...but he is so small! " I said he has a growth disorder

she replied.. " OHHH " . She then proceeded to walk over to another

waitress and began talking about us. I know she was because they both

kept looking at Isaac and then I saw the other woman say Ohhhh! Like

(Ohh that is so sad). They did it right in front of me!! The waitress

later asked if he could " walk and everything " and when I replied No

but we are getting there she just had that " I feel so sorry for you

expression " .By this point I am almost in tears because I am so angry.

Before we left she asked " So does he see a lot of doctors " ? I said

yes and she said " that's OK...they are taking real good care of him I

bet. " Art kept telling me to let it go but it is really hard

sometimes. Moms compare..I purposely sit away from other moms at the

pediatrician's office simply because I don't want to explain.

Mimi

Mom to Isaac 13 months (RSS, Hypothyroid..not walking or even

crawling, praying he will before the new baby comes

P.S.- I am starting to show and actually had a stranger say in

passing " wow..you are already having another one " . I think next time

I will say " Yeah..we are part rabbit " .

[Guest guest]

Mimi: I know what you have to go through when people discuss their

size. It happens on a daily basis! Very frustrating.

Unfortunately you will get it a lot. It's hard to let it go. For me

it depends on the day I am having. I either barely notice people's

comments or cry over them.

Mia didn't crawl at all at 13 months either. She was not mobile at

all until she started scooting around on her butt at 17 months old.

I guess it was easier for her to scoot than crawl (requires less

muscle use). She walked at 23 months. She is running now! It will

come but it may take a while. Take care!!

nne (Mia's mom/SGA)

>

> nne-

>

> We encountered this on Sunday when Art and I took Isaac to IHOP.

We

> asked for a highchair and the waitress came over and said " Oh he

is

> so cute..how old? " When I said 13 months she looked very puzzled

and

> said " really...but he is so small! " I said he has a growth

disorder

> she replied.. " OHHH " . She then proceeded to walk over to another

> waitress and began talking about us. I know she was because they

both

> kept looking at Isaac and then I saw the other woman say Ohhhh!

Like

> (Ohh that is so sad). They did it right in front of me!! The

waitress

> later asked if he could " walk and everything " and when I replied

No

> but we are getting there she just had that " I feel so sorry for

you

> expression " .By this point I am almost in tears because I am so

angry.

> Before we left she asked " So does he see a lot of doctors " ? I said

> yes and she said " that's OK...they are taking real good care of

him I

> bet. " Art kept telling me to let it go but it is really hard

> sometimes. Moms compare..I purposely sit away from other moms at

the

> pediatrician's office simply because I don't want to explain.

>

> Mimi

> Mom to Isaac 13 months (RSS, Hypothyroid..not walking or even

> crawling, praying he will before the new baby comes

>

> P.S.- I am starting to show and actually had a stranger say in

> passing " wow..you are already having another one " . I think next

time

> I will say " Yeah..we are part rabbit " .

[Guest guest]

Hi nne,

I can sympathize with you. We too get that all the time from some of my husbands

family which we see once a year, strangers friends,etc.....

Sounds like you have good responses.

Marcy na's mom

odmomx4 wrote:

I have a question on how to respond to people who ask me why Mia is

so small. Here are the 3 senario's I encounter the most:

Scenario 1: Total strangers coming up to us on a daily basis and

they say " She is sooooo small! " I usually just smile and say " Yes,

she is! "

Scenerio 2: Friends/people I barely know saying " Why is she so

small? " Do I go into the whole explanation of SGA? Do I say she

has a growth disorder? What is an easy, quick explanation? (I know

I don't have to explain anything at all but usually people inquire

because they mean well, or are concerned)

Scenerio 3: Some friends/family/neighbors know Mia has had a lot of

tests, therapy and a recent visit to Dr. H in New York. They all

want to know what is going on. When I explain that Mia does not

have RSS but has SGA and I explain a little what SGA is they

say " Oh, so she is just little " .

Meanest scenerio: I was at the bus stop to pick up my other kids

from school one day last year and the bus was a little late. I made

a comment (in front of a few people) that I wish the bus would hurry

because Mia has PT. A " friend " said " When are you going to stop

with all these doctor appts. and therapy and let her be a normal

little kid? " I turned and got into the car with my kids and drove

Mia to PT, crying the whole way (under my sunglasses so the kids

couldn't see). Things like this are very hurtful. I do the best to

make Mia be her best and people like this make these flip, hurtful

comments that I remember forever.

Anyway, thanks for reading this.

nne (Mia's mom!!)