Re: neither here nor there

[Guest guest]

Hi ,

Welcome to the group!

I couldn't have described my daughter any better! She is almost exactly like

yours with the exception that she is slightly older (7yrs 4mo.) and has

Epliepsy too. She also has an Arnold Chari malformation but it's slight and

the Neuro surgeon says she doesn't think any of 's delays or issues

are related to it, even though it can cause some of the things she has

experienced.

When we were seeking to know just what was causing the muliple issues she

was having, we found much of the same confusion. The teacher of her SpEd

Pre-K class didn't think she could be on the spectrum because she talked so

much (just couldn't understand ANY of it then) and had a desire to be around

people and communicate with them, she just didn't quite know how. Our

Neurologist at the time said it was possible that she had Aspergers but he

wouldn't want to make that dx until she was 10 or so. I wasn't pleased

hearing I'd have to wait so long to know what the deal was but I backed off

for a bit. Plus he was still thinking that her delays could just be the

result of the medications she was on for the seizures (she's been having

seizures, severe ones, since she was 7 mo. old) as some of those meds had a

known side effect of causing cognitive delays, but was the only type

available for her age.

But after lots of therapy, both private and in the school system, and being

off those delay causing meds for more than 2 years, she hadn't caught up as

her Pediatrician thought she should. So he referred her to a developmental

specialist who worked with her for several hours over the course of several

days, as well has having me and the teachers fill out numerous

questionaires.

With knowing her entire background he came to the dx of Mild Autism. And

said that the presentation of Autism in Girls IS different than the classic

presentation of Austim in boys.

I think part of that difference is the socialization aspect, instead of

being non social, my is overly social. As long as I can remember

(with the exception of a time frame when she was recovering from a 4 hour

seizure) she has tried to say Hi to everyone she sees, but if they were to

take the conversation further, she would either start to use scripts from

Dora, or get overwhelmed and stop talking completely. When she was young,

most people thought she was just shy and smart (because when asked her name,

she would always reply with " A volcano is a mountain that explodes! " )

It wasn't till she was 4 that we were able to teach her that when someone

asked her name, the correct response was " " or " My name is "

Even trick or treating last night for example... She didn't want to go each

time I asked if she was ready for it, she'd say " no. I not want trick treat "

I would explain again that we say trick or treat and the nice people will

give her candy, and she'd say no, that's ok, I not want candy.

Then when we were getting ready to go, she went ahead and let me get her

dressed and was excited about it. Since not that many homes in our

neighborhood had their lights on, my husband drove the van up a block or so

and then we'd walk up till we got back then he'd do it again. Every time he

went to get in the van, she would require a hug and kiss, tell him Bye Dad!

Have good day! Love you daddy! Have good day! See you morrow! ... Even after

telling her he wasn't going far and he'd be back in just a minute, she would

have to say those things. And if a person didn't shut their door quick

enough, she would tell them " you need close door now! " And because most

people were giving out several pieces of candy, if a person only gave her

one, she would quickly reach in and grab another out of their bowl. It's

hard to get onto her about that because so many people around here were

giving out more and most were encouraging her (and her older sister) to take

more because they hadn't gotten as many kids this year.

Anyway, this is getting too long, lol. I could probably go on forever

I know that her current teachers still question her diagnosis because there

is only one other girl who I believe may have a similar dx (although, I

don't know her parents so I don't know if she has any dx at all, and of

course the teachers can't tell me so I don't ask, I just assume as much) and

the other cases of Autism are all in boys and more severe than .

I think you'll find here that many of the girls have a much different

presentation of ASD than boys, and unfortunately awareness of that

difference just isn't as wide spread as it should be yet.

Well welcome to the group, it's a great place and I've learned a ton since

joining, and 'met' some great women on the spectrum, they are a great

resource and provide a huge light at the end of the tunnel. The group has

definately given me a higher expectation of my daughter and knoweledge that

she can lead a very full and happy life despite her dx.

Theresa aka 's mom

>

>

> Hi gang. My daughter is 4 1/2. I'm a newbie. I could really use some help.

>

> My daughter had a dyspraxia diagnosis between ages 2 and 4. Now her dev ped

> feels we should join the asd club. She is not " classically autistic " . The

> features she has are: significant verbal delay/difficulty, communication

> delay/difficulty, motor and coordination delays, some spd, strong memory and

> visual learner, confused and sometimes upset by displays of emotion, low

> muscle tone, regulatory issues, often hyperactive, has a wide range of

> interests, but can get pretty intense and repetitive in her play. I'm

> probably forgetting something...

>

> She can also be quite engaged and socially connected. She is definitely

> socially motivated, unless intimidated. This is the piece that trips people

> up. We have a couple specialists (a tutor and an OT) who question the asd

> diagnosis for her. I have also been to some autism specific classrooms that

> are totally inappropriate for my daughter because the kids are not socially

> motivated the way my daughter is.

>

> It's not that I need a definite diagnosis to be able to work toward

> supporting my daughter. But it's hard feeling like we don't fit in anywhere.

> And I'm wondering is this common for girls on the spectrum?

>

> PDD-NOS maybe? That's on the spectrum, though, isn't it?

>

> How on earth do I find an appropriate learning community for her for

> elementary school?

>

> Thanks for your help. I look forward to hearing your responses.

>

>

>

>

>

[Guest guest]

Hi , welcome!

I have to agree with Theresa. I forget how easy we have it in a big

school district. We have so many kids with variations of autism (of both

genders) that we just don't have the trouble getting it recognized that folks

in

smaller school systems do. My dd's best friend is a girl diagnosed with

Asperger's, and they grew up the same age in the same elementary school.

That can happen when there are 1,000 kids in the school!

When we went in to ask for an ASD diagnosis (back in 2000, when she was 5)

my daughter had the same profile as yours does, and we had no problems at

all with them recognizing her needs. They could even tell that she was

PDDNOS, and not Asperger's like her friend. That was ten years ago, they had

to teach me the difference. :-)

Anyway, I do agree with the possibility of PDDNOS. At that age, my dd hit

those symptoms you list almost 100% and that's her diagnosis too. She has

always been highly socially motivated, very verbal but really delayed (she

always goes for vocal stims), and very affectionate. Not to say that she

succeeds socially (that's hit and miss), but she tries hard and wants to

connect.

A dedicated autism classroom may not be the best place for a child like

ours. Because of the " moderate " speech delay, my daughter attended a

half-day speech immersion preschool from age 3-5. That meant a class of 7

students, with full time special ed teacher/speech specialist and full time

aide,

and one hour per week one-on-one with a speech pathologist. In addition,

we took her to private OT from then until about age 8, because we didn't

feel she was making quick enough progress with the school districts' OT

services. The OT gave us terrific tools to help with the low muscle tone,

regulatory issues, handwriting, and later on with " board to paper " skills.

From Kinder to 5th grade my daughter's school placed her in co-teach

classes. For the first few years, that was with one regular ed teacher, one

special needs teacher, and a full-time aide for a class of 22-24 mixed regular

and special needs students for mainstreamed education. The students could

be typical/ordinary, or have any need, [dyslexia, ASD, ADHD etc.], and

carried a full regular academic load. During each day they had constantly

available pull-out with the SPED teacher and the aide for any student in the

class that needed it. My dd also continued to receive speech services

(in-class or pull-out), for her articulation and pragmatic needs and also for

social skills after her ASD diagnosis. Because of her excellent memory and

visual skills, she really began to shine academically through her elementary

years. The school slowly weaned her into full mainstreaming, first with

an aide, then with none at all but the regular classroom teacher.

I am not surprised that people like your daughter's tutor and OT don't see

her diagnosis. Not to say that they're wrong, that's for an expert

diagnostician to say, but people who worked with my dd one-on-one often didn't

" get " her deficits. So often, ASD girls don't present with the classic

autistic behaviors they're expecting to see. When the girls do show those

signs,

it's often easier to see in group settings, and the people providing those

services usually don't see them interacting with peers in groups. I

should have a nickel for every time someone who only saw my daughter for an

hour a week has said, " But all little girls act that way sometimes! " They

didn't " get " that that is how girls show signs of autism spectrum. It's not

what they do, but how often, how intensely, and in what manner.

My dd was first diagnosed with speech delays and motor issues at age 2½-3.

She was 4½ when her teacher from that special speech preschool came to us

and suggested we have a full diagnosis done, because she suspected ASD.

Sandi

[Houston]

In a message dated 10/31/2010 9:42:23 P.M. Central Daylight Time,

meganreville@... writes:

Hi gang. My daughter is 4 1/2. I'm a newbie. I could really use some help.

My daughter had a dyspraxia diagnosis between ages 2 and 4. Now her dev

ped feels we should join the asd club. She is not " classically autistic " . The

features she has are: significant verbal delay/difficulty, communication

delay/difficulty, motor and coordination delays, some spd, strong memory and

visual learner, confused and sometimes upset by displays of emotion, low

muscle tone, regulatory issues, often hyperactive, has a wide range of

interests, but can get pretty intense and repetitive in her play. I'm probably

forgetting something...

She can also be quite engaged and socially connected. She is definitely

socially motivated, unless intimidated. This is the piece that trips people

up. We have a couple specialists (a tutor and an OT) who question the asd

diagnosis for her. I have also been to some autism specific classrooms that

are totally inappropriate for my daughter because the kids are not socially

motivated the way my daughter is.

It's not that I need a definite diagnosis to be able to work toward

supporting my daughter. But it's hard feeling like we don't fit in anywhere.

And

I'm wondering is this common for girls on the spectrum?

PDD-NOS maybe? That's on the spectrum, though, isn't it?

How on earth do I find an appropriate learning community for her for

elementary school?

Thanks for your help. I look forward to hearing your responses.

[Guest guest]

Hi !

My daughter is just a few months older than yours. She will be 5 in December,

and she exhibits many of the same characteristics that you mentioned. Also very

similar to . My daughter, Zoe, has not been diagnosed with any other

medical conditions, but I have the same questions when it comes to autism and

her behavior. I read all the books I could when we thought it was autism, and

one of the books, I felt, and of course, I cannot remember it right now, but

they mentioned groups of autism, and one was labeled " social but odd " and I can

definitely put Zoe into that category. She loves people, loves kids, adults,

but she is absolutely overly social. She has no boundaries. She doesn't

understand about strangers, parent/child relationships, any of that. She did

not talk until she was three and started going to a special program in our area

for developmental delays (it was provided through the school). Anyway, her

language exploded, but they still only claimed she is about 5% of where she

should be, and if you really listen to her, you can tell that most of her

talking is not communicative. She might as well be a tv on in the background,

or she will just talk about things that have happened on the Wii, or repeat

phrases she's heard. There are times when I feel like I can really talk to her,

and then most of the time she is oblivious. She is getting along with her two

older sisters so much better now (they are 7 and 9), and that makes my life so

much easier because she will actually play at least near them if not with them,

and not always around me. I am excited to know you and your daughter are out

there, because I feel very alone a lot of the time! Feel free to email me!

jamie at thisbox dot com.

>

> Hi gang. My daughter is 4 1/2. I'm a newbie. I could really use some help.

>

> My daughter had a dyspraxia diagnosis between ages 2 and 4. Now her dev ped

feels we should join the asd club. She is not " classically autistic " . The

features she has are: significant verbal delay/difficulty, communication

delay/difficulty, motor and coordination delays, some spd, strong memory and

visual learner, confused and sometimes upset by displays of emotion, low muscle

tone, regulatory issues, often hyperactive, has a wide range of interests, but

can get pretty intense and repetitive in her play. I'm probably forgetting

something...

>

> She can also be quite engaged and socially connected. She is definitely

socially motivated, unless intimidated. This is the piece that trips people up.

We have a couple specialists (a tutor and an OT) who question the asd diagnosis

for her. I have also been to some autism specific classrooms that are totally

inappropriate for my daughter because the kids are not socially motivated the

way my daughter is.

>

> It's not that I need a definite diagnosis to be able to work toward supporting

my daughter. But it's hard feeling like we don't fit in anywhere. And I'm

wondering is this common for girls on the spectrum?

>

> PDD-NOS maybe? That's on the spectrum, though, isn't it?

>

> How on earth do I find an appropriate learning community for her for

elementary school?

>

> Thanks for your help. I look forward to hearing your responses.

>

>

>

[Guest guest]

 Hi megan  My first thought when i read the description of your daughter is

that

her  needs remind me of children with down syndrome.  I know your child does

not

have this condition but if you know anything about children who do, most of the

delays which you describe are also common to them.  If you are open , you may

want to check with your local down syndrome organization and ask parents about

the educational settings that work well for their children. My daughter with

down syndrome has many different kids in her class who don't fit a certain

label, not just children with down syndrome.  Yet they all have areas of need

much as you describe and most have PDnos dx.  A classroom specific to autism

may

not address all these concerns effectively.

  .  This route may just help you find a path to get the extra expertise she

needs  in a setting that will maintain and develop her social connections.  

Since  your wee girl doesn't fit the mold (as if there is one)  try to

 expand

out of the autism community to research a placement that will best target her 

wide range of learning needs.   Hope this helps.   jay

________________________________

To: Autism_in_Girls_and_Women

Sent: Sun, October 31, 2010 10:40:51 PM

Subject: neither here nor there

 

Hi gang. My daughter is 4 1/2. I'm a newbie. I could really use some help.

My daughter had a dyspraxia diagnosis between ages 2 and 4. Now her dev ped

feels we should join the asd club. She is not " classically autistic " . The

features she has are: significant verbal delay/difficulty, communication

delay/difficulty, motor and coordination delays, some spd, strong memory and

visual learner, confused and sometimes upset by displays of emotion, low muscle

tone, regulatory issues, often hyperactive, has a wide range of interests, but

can get pretty intense and repetitive in her play. I'm probably forgetting

something...

She can also be quite engaged and socially connected. She is definitely socially

motivated, unless intimidated. This is the piece that trips people up. We have a

couple specialists (a tutor and an OT) who question the asd diagnosis for her. I

have also been to some autism specific classrooms that are totally inappropriate

for my daughter because the kids are not socially motivated the way my daughter

is.

It's not that I need a definite diagnosis to be able to work toward supporting

my daughter. But it's hard feeling like we don't fit in anywhere. And I'm

wondering is this common for girls on the spectrum?

PDD-NOS maybe? That's on the spectrum, though, isn't it?

How on earth do I find an appropriate learning community for her for elementary

school?

Thanks for your help. I look forward to hearing your responses.

[Guest guest]

Oh I couldn't agree with you more Jay!

I got so caught up in excitement of how much her daughter seemed much like

my own, that I forgot to address the educational question she asked! LOL

Due to the fact that we were dealing with seizures and regressions early on,

we were in the Early Steps program long before any dx was there and they

were great at streaming her into the school system at 3. I was a nervous

wreck about putting my 3 year old in an all day/everyday program but after

some talking with the teacher and other Special Ed staff in our district we

agreed to try out the program they recommended which was a VE-PreK (and now

she's in a regular VEclass VE = Varying Exceptionalities) and has

definately had a diverse set of classmates throughout the years so far and I

found it neat that Jay mentioned the similarities to DS because I've thought

much the same thing about my daughter! And so far, the children in her class

with DS have been her best friends. And it's been a great match for the most

part. They tend to help balance each other though there are times that they

have been found to get each other going too But hey! they're kids right?

That happens.

She's had children in class that have no developmental delays but were in

the class due to other physical disabilities, not to segragate them but more

to aid in the transition to a gen.ed. class. There were quite a few who

simply had speech delays, others who had autism as well (some of them went

on to special autism schools but they wouldn't have been a good fit for our

) and some with DS and even a few who simply had more severe behavior

issues. The pre-k teacher we were blessed with, happened to have also been a

behavioral specialist in constant training with many years of VE pre-k

experience.

I think finding out what's available in your area and going to visit the

programs to have a better understanding of what they offer and how they can

help is going to be the best thing.

Good luck and do come back often!

THeresa

On Mon, Nov 1, 2010 at 12:44 PM, Jay Armistead wrote:

>

>

> Hi megan My first thought when i read the description of your daughter is

> that

> her needs remind me of children with down syndrome. I know your child

> does not

> have this condition but if you know anything about children who do, most of

> the

> delays which you describe are also common to them. If you are open , you

> may

> want to check with your local down syndrome organization and ask parents

> about

> the educational settings that work well for their children. My daughter

> with

> down syndrome has many different kids in her class who don't fit a certain

> label, not just children with down syndrome. Yet they all have areas of

> need

> much as you describe and most have PDnos dx. A classroom specific to

> autism may

> not address all these concerns effectively.

> . This route may just help you find a path to get the extra expertise

> she

> needs in a setting that will maintain and develop her social

> connections.

> Since your wee girl doesn't fit the mold (as if there is one) try to

> expand

> out of the autism community to research a placement that will best target

> her

> wide range of learning needs. Hope this helps. jay

>

> ________________________________

> From: <meganreville@... <meganreville%40yahoo.com>>

> To:

Autism_in_Girls_and_Women <Autism_in_Girls_and_Women%40yahoogroup\

s.com>

> Sent: Sun, October 31, 2010 10:40:51 PM

> Subject: neither here nor there

>

>

>

> Hi gang. My daughter is 4 1/2. I'm a newbie. I could really use some help.

>

> My daughter had a dyspraxia diagnosis between ages 2 and 4. Now her dev ped

>

> feels we should join the asd club. She is not " classically autistic " . The

> features she has are: significant verbal delay/difficulty, communication

> delay/difficulty, motor and coordination delays, some spd, strong memory

> and

> visual learner, confused and sometimes upset by displays of emotion, low

> muscle

> tone, regulatory issues, often hyperactive, has a wide range of interests,

> but

> can get pretty intense and repetitive in her play. I'm probably forgetting

> something...

>

> She can also be quite engaged and socially connected. She is definitely

> socially

> motivated, unless intimidated. This is the piece that trips people up. We

> have a

> couple specialists (a tutor and an OT) who question the asd diagnosis for

> her. I

> have also been to some autism specific classrooms that are totally

> inappropriate

> for my daughter because the kids are not socially motivated the way my

> daughter

> is.

>

> It's not that I need a definite diagnosis to be able to work toward

> supporting

> my daughter. But it's hard feeling like we don't fit in anywhere. And I'm

> wondering is this common for girls on the spectrum?

>

> PDD-NOS maybe? That's on the spectrum, though, isn't it?

>

> How on earth do I find an appropriate learning community for her for

> elementary

> school?

>

> Thanks for your help. I look forward to hearing your responses.

>

>

>

>

[Guest guest]

Yes, my daughter seems very similiar to these descriptions as well! She even

phrases things like " I not go trick or treating "   But she always smiled, laughed

and made good eye contact with me. This is why we were so suprised with the

diagnosis....

________________________________

To: Autism_in_Girls_and_Women

Sent: Mon, November 1, 2010 4:55:44 AM

Subject: Re: neither here nor there

Hi ,

Welcome to the group!

I couldn't have described my daughter any better! She is almost exactly like

yours with the exception that she is slightly older (7yrs 4mo.) and has

Epliepsy too. She also has an Arnold Chari malformation but it's slight and

the Neuro surgeon says she doesn't think any of 's delays or issues

are related to it, even though it can cause some of the things she has

experienced.

When we were seeking to know just what was causing the muliple issues she

was having, we found much of the same confusion. The teacher of her SpEd

Pre-K class didn't think she could be on the spectrum because she talked so

much (just couldn't understand ANY of it then) and had a desire to be around

people and communicate with them, she just didn't quite know how. Our

Neurologist at the time said it was possible that she had Aspergers but he

wouldn't want to make that dx until she was 10 or so. I wasn't pleased

hearing I'd have to wait so long to know what the deal was but I backed off

for a bit. Plus he was still thinking that her delays could just be the

result of the medications she was on for the seizures (she's been having

seizures, severe ones, since she was 7 mo. old) as some of those meds had a

known side effect of causing cognitive delays, but was the only type

available for her age.

But after lots of therapy, both private and in the school system, and being

off those delay causing meds for more than 2 years, she hadn't caught up as

her Pediatrician thought she should. So he referred her to a developmental

specialist who worked with her for several hours over the course of several

days, as well has having me and the teachers fill out numerous

questionaires.

With knowing her entire background he came to the dx of Mild Autism. And

said that the presentation of Autism in Girls IS different than the classic

presentation of Austim in boys.

I think part of that difference is the socialization aspect, instead of

being non social, my is overly social. As long as I can remember

(with the exception of a time frame when she was recovering from a 4 hour

seizure) she has tried to say Hi to everyone she sees, but if they were to

take the conversation further, she would either start to use scripts from

Dora, or get overwhelmed and stop talking completely. When she was young,

most people thought she was just shy and smart (because when asked her name,

she would always reply with " A volcano is a mountain that explodes! " )

It wasn't till she was 4 that we were able to teach her that when someone

asked her name, the correct response was " " or " My name is "

Even trick or treating last night for example... She didn't want to go each

time I asked if she was ready for it, she'd say " no. I not want trick treat "

I would explain again that we say trick or treat and the nice people will

give her candy, and she'd say no, that's ok, I not want candy.

Then when we were getting ready to go, she went ahead and let me get her

dressed and was excited about it. Since not that many homes in our

neighborhood had their lights on, my husband drove the van up a block or so

and then we'd walk up till we got back then he'd do it again. Every time he

went to get in the van, she would require a hug and kiss, tell him Bye Dad!

Have good day! Love you daddy! Have good day! See you morrow! ... Even after

telling her he wasn't going far and he'd be back in just a minute, she would

have to say those things. And if a person didn't shut their door quick

enough, she would tell them " you need close door now! " And because most

people were giving out several pieces of candy, if a person only gave her

one, she would quickly reach in and grab another out of their bowl. It's

hard to get onto her about that because so many people around here were

giving out more and most were encouraging her (and her older sister) to take

more because they hadn't gotten as many kids this year.

Anyway, this is getting too long, lol. I could probably go on forever

I know that her current teachers still question her diagnosis because there

is only one other girl who I believe may have a similar dx (although, I

don't know her parents so I don't know if she has any dx at all, and of

course the teachers can't tell me so I don't ask, I just assume as much) and

the other cases of Autism are all in boys and more severe than .

I think you'll find here that many of the girls have a much different

presentation of ASD than boys, and unfortunately awareness of that

difference just isn't as wide spread as it should be yet.

Well welcome to the group, it's a great place and I've learned a ton since

joining, and 'met' some great women on the spectrum, they are a great

resource and provide a huge light at the end of the tunnel. The group has

definately given me a higher expectation of my daughter and knoweledge that

she can lead a very full and happy life despite her dx.

Theresa aka 's mom

>

>

> Hi gang. My daughter is 4 1/2. I'm a newbie. I could really use some help.

>

> My daughter had a dyspraxia diagnosis between ages 2 and 4. Now her dev ped

> feels we should join the asd club. She is not " classically autistic " . The

> features she has are: significant verbal delay/difficulty, communication

> delay/difficulty, motor and coordination delays, some spd, strong memory and

> visual learner, confused and sometimes upset by displays of emotion, low

> muscle tone, regulatory issues, often hyperactive, has a wide range of

> interests, but can get pretty intense and repetitive in her play. I'm

> probably forgetting something...

>

> She can also be quite engaged and socially connected. She is definitely

> socially motivated, unless intimidated. This is the piece that trips people

> up. We have a couple specialists (a tutor and an OT) who question the asd

> diagnosis for her. I have also been to some autism specific classrooms that

> are totally inappropriate for my daughter because the kids are not socially

> motivated the way my daughter is.

>

> It's not that I need a definite diagnosis to be able to work toward

> supporting my daughter. But it's hard feeling like we don't fit in anywhere.

> And I'm wondering is this common for girls on the spectrum?

>

> PDD-NOS maybe? That's on the spectrum, though, isn't it?

>

> How on earth do I find an appropriate learning community for her for

> elementary school?

>

> Thanks for your help. I look forward to hearing your responses.

>

>

>

>

>

[Guest guest]

I have 2 daughters Destiny - she is 13 and she has a PDD diagnosis along with

some others (learning disability, dyslexia, ADHD, anxiety, etc.).  Maddie is 15

with autism, moderate/severe MR, ADHD, cerebral palsy, bipolar, and now they

are

looking at multiple personalities.   I wouldn't worry about the diagnosis -

keep

it.  I've found for us, with all their diagnosis (especially Maddie's) when I

request services, they seem to come quicker.  I know some of them people can

sterotype - we don't tell anyone except doctors and who needs to know at

school.  We've made it VERY clear that only the teacher and administration is

to

know - not even the aids know their full diagnosis.  We did this because of

sterotype and confidentiality.  We had an issue back when we first adopted

Maddie - and aid liked to go around telling everyone all about her work and

those poor kids she helped (she got fired eventually), but after that we got

very funny about who knows their  diagnosis.  Do I 100% agree with all of them

-

no.  But in the past, it has made it easier to get services for her when they

see this long list. 

As far as school, Destiny did struggle fitting in.  She is very outgoing and

personable, but struggled academically.  We ended up pulling her out and

homeschooling her.  But we know of other families that have made a very good

IEP

to support their children that have the same issues and some have even gone to

private schools that they explained their issues and the school worked with them

(they had TSS for their child also).  Since she is 4, is there an Intermediate

Unit 8 near that she could go to a preschool through them.  I know the one we

have has a variety of disabilities (some academic and some physical) so there is

a variety of kids there.  Our headstart here is also big on mainstreaming

special needs children with regular education to get both comfortable with each

other.  The teacher and staff do a wonderful job of teaching respect and

feelings and how to become friends.  My daugther went there and she excelled. 

We just struggled when we hit 3rd grade because of her dyslexia - she was

falling so far behind educationally.   She needs one-on-one and tons of

repetition.  In the regular classroom they just couldn't give it to her so

their

next solution was to put her in a Life Skills classroom which wasn't appropriate

for her educationally or socially.  I feel if Destiny didn't have the dyslexia

she would have been able to stay in the classroom, but you have to be very

willing to work with the school and keep pushing to make sure everything is

being followed.  In the past, we have had some teachers that excelled the IEP -

they were just great at what they did, but then we had others that I knew they

weren't doing it and were just lying about it.  I just figured all the energy I

was using to get her IEP in place, I could teach her myself.  When it comes

time

to register your daughter for kinderarten you could go and register and maybe

ask to talk to the teacher, special ed dept., etc. and explain your concerns and

ask them if they know of a school that would suit her needs better.  For

Destiny's social part - we do a swimming class, baton, and homeschool

activities.  We have found other families that have the same situation so our

kids do very well together.  But so far, everyone has accepted Destiny and been

very patient with her - I know that is a huge blessing and not always the

case. 

Good luck with everything and my advice is go with your gut.  I have found as

a

mother, I'm usually right on when it comes to my kids' needs:)

Rhonda

From: meganreville@...

>To: Autism_in_Girls_and_Women

>Sent: Sun, October 31, 2010 10:40:51 PM

>Subject: neither here nor there

>

> 

>Hi gang. My daughter is 4 1/2. I'm a newbie. I could really use some help.

>

>My daughter had a dyspraxia diagnosis between ages 2 and 4. Now her dev ped

>feels we should join the asd club. She is not " classically autistic " . The

>features she has are: significant verbal delay/difficulty, communication

>delay/difficulty, motor and coordination delays, some spd, strong memory and

>visual learner, confused and sometimes upset by displays of emotion, low muscle

>tone, regulatory issues, often hyperactive, has a wide range of interests, but

>can get pretty intense and repetitive in her play. I'm probably forgetting

>something...

>

>She can also be quite engaged and socially connected. She is definitely

socially

>motivated, unless intimidated. This is the piece that trips people up. We have

a

>couple specialists (a tutor and an OT) who question the asd diagnosis for her.

I

>have also been to some autism specific classrooms that are totally

inappropriate

>for my daughter because the kids are not socially motivated the way my daughter

>is.

>

>

>It's not that I need a definite diagnosis to be able to work toward supporting

>my daughter. But it's hard feeling like we don't fit in anywhere. And I'm

>wondering is this common for girls on the spectrum?

>

>PDD-NOS maybe? That's on the spectrum, though, isn't it?

>

>How on earth do I find an appropriate learning community for her for elementary

>school?

>

>

>Thanks for your help. I look forward to hearing your responses.

>

>

>

>

>

[Guest guest]

Thank you ALL so much for your responses. They are so helpful. Tessa isn't alone

in the world. Neither am I. :-)

To add some more information in response to some of the questions...We found a

public early childhood program that is run through the ESD in my area (Portland,

Oregon), and Tessa is doing very well there. The children have a variety of

special needs, which is encouraging to T, and there is a lot of support. It is

also only 6 hours per week. So now that she is settled into this program, we are

looking for some other activities for her in the community.

Elementary is a different story. The special private schools in the area are

more geared toward children with traditional autistic features. The public

school district has lifeskills classrooms, which I don't think will be

appropriate for her (but I will have a look) and a classroom called CB

(communication and behaviors). CB classrooms are not the happy and inspiring

environments that children deserve.

Thank you all so much for sharing your stories and ideas.

Sincerely,

>

> Hi gang. My daughter is 4 1/2. I'm a newbie. I could really use some help.

>

> My daughter had a dyspraxia diagnosis between ages 2 and 4. Now her dev ped

feels we should join the asd club. She is not " classically autistic " . The

features she has are: significant verbal delay/difficulty, communication

delay/difficulty, motor and coordination delays, some spd, strong memory and

visual learner, confused and sometimes upset by displays of emotion, low muscle

tone, regulatory issues, often hyperactive, has a wide range of interests, but

can get pretty intense and repetitive in her play. I'm probably forgetting

something...

>

> She can also be quite engaged and socially connected. She is definitely

socially motivated, unless intimidated. This is the piece that trips people up.

We have a couple specialists (a tutor and an OT) who question the asd diagnosis

for her. I have also been to some autism specific classrooms that are totally

inappropriate for my daughter because the kids are not socially motivated the

way my daughter is.

>

> It's not that I need a definite diagnosis to be able to work toward supporting

my daughter. But it's hard feeling like we don't fit in anywhere. And I'm

wondering is this common for girls on the spectrum?

>

> PDD-NOS maybe? That's on the spectrum, though, isn't it?

>

> How on earth do I find an appropriate learning community for her for

elementary school?

>

> Thanks for your help. I look forward to hearing your responses.

>

>

>