Re: What would you tell professionals?

[Guest guest]

Beth: I would first let them know that our kid's primary dx is now

AUTISM..secondary DS..then that our kids are not typical kids with ASD,nor

are they typical kids with ASD. Our kiddos skills are much more splintered

and each child has to be dealt with uniquely.

Liz

>

>

> Hi, all. I'm going to speak in a week to a group of pediatricians, social

> workers, nurses and therapists, both professional and late-stage trainees

> and fellows, about understanding the parent perspective.

>

> As parents of kiddos with DS/autism, what would you want a doctor, nurse,

> social worker or therapist, or just medical professionals in general, to

> know in terms of understanding you, how to work with you, how to treat your

> child, how to help, etc?

>

> I'll be compiling responses in a handout for them - no names attached.

>

> Thanks,

> Beth, 's mom

>

>

[Guest guest]

just to clarify... " and not typical kids with DS " (ASD was used twice), and

I think Liz said it perfectly in a nutshell!

I would also add that our kids are more " complicated " then the typical kids

with ASD or DS. Sometimes I think the two dx's are fighting each other

if that makes sense.

Heidi

[Guest guest]

sorry..not typical kids with DS nor are they typical kids with ASD!!! =)

>

>

> just to clarify... " and not typical kids with DS " (ASD was used twice), and

>

> I think Liz said it perfectly in a nutshell!

>

> I would also add that our kids are more " complicated " then the typical kids

>

> with ASD or DS. Sometimes I think the two dx's are fighting each other

> if that makes sense.

>

> Heidi

>

>

>

[Guest guest]

It'd be fabulous if they had social stories, already printed up and everything,

for things like blood draws, vaccines, etc.

I'd love for them to always keep in mind that I live my child. I would never

have chosen his DS or autism, but I love him for who he is. Some Dr's act like

I shouldn't have had him. It's infuriating.

Sent from my iPhone

> Hi, all. I'm going to speak in a week to a group of pediatricians, social

workers, nurses and therapists, both professional and late-stage trainees and

fellows, about understanding the parent perspective.

>

> As parents of kiddos with DS/autism, what would you want a doctor, nurse,

social worker or therapist, or just medical professionals in general, to know in

terms of understanding you, how to work with you, how to treat your child, how

to help, etc?

>

> I'll be compiling responses in a handout for them - no names attached.

>

> Thanks,

> Beth, 's mom

>

>

[Guest guest]

I would tell them how quirky our kids are. Some things are so difficult to

explain. An example, Isaac went to a party on Sunday and ate too many

chocolate cookies. Monday morning he says his stomach hurts and we both

know “a big poop” is coming. I couldn’t see him staying home just to poop

and I also hesitated to tell his teacher that he might have to poop at

school that day – I mean, the kid should just be allowed to poop right? But

of course he gets in trouble for being in the bathroom too long and for

using too much toilet paper – though he did not stop up the toilet. But he

toilet trained at 3 ½, het gets what to do, it just takes him longer. And

he needs to be naked to poop. The school HATES it when he gets naked. It’s

just how he poops. So, our kids are quirky, it’s okay. The rest of the

world needs to get over it.

Good luck Beth! I’m sure you will do a fine job.

Lori

Mom to Isaac 14 and Tony 12

_____

From: [mailto: ] On Behalf

Of Cookson

Sent: Wednesday, February 02, 2011 8:57 PM

To:

Subject: Re: What would you tell professionals?

It'd be fabulous if they had social stories, already printed up and

everything, for things like blood draws, vaccines, etc.

I'd love for them to always keep in mind that I live my child. I would never

have chosen his DS or autism, but I love him for who he is. Some Dr's act

like I shouldn't have had him. It's infuriating.

Sent from my iPhone

On Feb 2, 2011, at 4:25 PM, " B DeHoff " <dehoff5@...

<mailto:dehoff5%40att.net> > wrote:

> Hi, all. I'm going to speak in a week to a group of pediatricians, social

workers, nurses and therapists, both professional and late-stage trainees

and fellows, about understanding the parent perspective.

>

> As parents of kiddos with DS/autism, what would you want a doctor, nurse,

social worker or therapist, or just medical professionals in general, to

know in terms of understanding you, how to work with you, how to treat your

child, how to help, etc?

>

> I'll be compiling responses in a handout for them - no names attached.

>

> Thanks,

> Beth, 's mom

>

>

[Guest guest]

I HATE when they ignore my son while talking about him in front of him. It

is rude and condescending.

And it is none of their business medically if I adopted him, had him, knew

before he was born, etc.

He is here, he is a person, he is an adult, and he is mine!

>

>

> It'd be fabulous if they had social stories, already printed up and

> everything, for things like blood draws, vaccines, etc.

>

> I'd love for them to always keep in mind that I live my child. I would

> never have chosen his DS or autism, but I love him for who he is. Some Dr's

> act like I shouldn't have had him. It's infuriating.

>

>

>

> Sent from my iPhone

>

> On Feb 2, 2011, at 4:25 PM, " B DeHoff " <dehoff5@...<dehoff5%40att.net>>

> wrote:

>

> > Hi, all. I'm going to speak in a week to a group of pediatricians, social

> workers, nurses and therapists, both professional and late-stage trainees

> and fellows, about understanding the parent perspective.

> >

> > As parents of kiddos with DS/autism, what would you want a doctor, nurse,

> social worker or therapist, or just medical professionals in general, to

> know in terms of understanding you, how to work with you, how to treat your

> child, how to help, etc?

> >

> > I'll be compiling responses in a handout for them - no names attached.

> >

> > Thanks,

> > Beth, 's mom

> >

> >

[Guest guest]

Liz,

I think we are both trying to say the kids with DS who just have DS, and

the kids with autism who just have autism right? ;-) Whew!

Because our kids with both (among other things) are in a whole other

league!

Heidi

[Guest guest]

I am saying that our kids are not typical kids with DS, nor are they typical

kids with ASD. They are kids with both and who's primary diagnosis is now

Autism and are definitely in a league of their own!

>

>

> Liz,

>

> I think we are both trying to say the kids with DS who just have DS, and

> the kids with autism who just have autism right? ;-) Whew!

>

> Because our kids with both (among other things) are in a whole other

> league!

>

> Heidi

>

>

[Guest guest]

To me, a key issue is that while the medical profession knows much about Ds,

there is much less known about autism. Each child is significantly different in

how they respond to medical or therapy treatments. Therefore, it is really

crucial that the medical, educational, and therapy professionals listen closely

to parent & #39;s observations and intuitions, and work together to come up with

solutions. For example, my 8 year old son Stuart (Ds and autism, non-verbal)

recently had an infection and was prescribed Augmentin. Within 3 days, his

respiratory issues were better, but he began banging his head. I looked online

and found out that liquid Augmentin has Aspertame, which causes severe headaches

for many people. The pharmacist confirmed that, and suggested we change to the

tablet form, which resolved the head banging. Apparently, virtually all

children & #39;s liquid medicines contain Aspartame. I let the pediatrician know;

she was unaware of this

issue as well. So, parents & #39; observations, along with coordinated efforts

by all involved, are crucial for successful treatments for our children. They

are wonderful adorable, individual enigmas.

Anne, mom to Chandler (11, ASD), Tyler (9), and Stuart (8, Ds and ASD)

[Guest guest]

I think the most important thing I could tell any professional working with my

child is that I know my child. Testing may confirm what I'm telling you but just

because you aren't seeing something doesn't mean it's not happening. One of my

son's favorite things to do is have something going on at home (like pulling on

his ear because of an earache), and then when we get to the doctor's office he

acts like he's just fine.

mom to Aden 7(DS, ASD, ADHD) and Aren 4

________________________________

To:

Sent: Wed, February 2, 2011 1:25:24 PM

Subject: What would you tell professionals?

Â

Hi, all. I'm going to speak in a week to a group of pediatricians, social

workers, nurses and therapists, both professional and late-stage trainees and

fellows, about understanding the parent perspective.

As parents of kiddos with DS/autism, what would you want a doctor, nurse, social

worker or therapist, or just medical professionals in general, to know in terms

of understanding you, how to work with you, how to treat your child, how to

help, etc?

I'll be compiling responses in a handout for them - no names attached.

Thanks,

Beth, 's mom