So bewildered about DS/ASD

[Guest guest]

nna: I realized about Tori after I started working with a set of 5 yr. old

twins who were autistic. I would come home and she would be mirroring them

(self soothing, flapping) We didn't really think about the lack of eye contact

because she had congenital cataract surgery when she was an infant, but that

wasn't it at all.

I attended the conference the NDSC had in Phila a few years back and attended a

workshop given my Lashno, a dr. from KK, and she passed out a handout with

the differences between kids with DS sensory issues and kids with DS & ASD.

Well, after reviewing the list, Tori displayed about 12 of the typical

" behaviors " of autism " Here is the list....

Some Characteristics of a Child with Down syndrome

& Autistic Spectrum Disorder

Ø Child is reported to be developing at an expected pace up until about 1 year

of age

Ø Family begins to notice decreased skills with play, social interaction, eye

contact

Ø May exhibit numerous sensory issues with tactile, vestibular, and

proprioceptive systems.

Ø Exhibit preservative or self-stimulatory behaviors

Ø Abnormal behaviors may be present and are listed below:

? Decreased or no eye contact

? Excessive mouthing of objects

? Staring directly into the lights

? Abnormal hand movements (such as flicking fingers in front of eyes, waving

hands away from body, flapping of arms & stiffening of legs)

? Refusal to hold objects

? Flat affect

? Limited communication skills (signing or words)

? Decreased interaction with people

? Limited or no interest in toys

? Self-stimulatory behaviors (such as rocking, head banging, humming, teeth

grinding)

? Wandering

So bewildered about DS/ASD

I read all of these posts from all of you wonderful

moms and am amazed at what you do for your kids and

how well you know them. Where did you start, how did

you know. What did you see in your child that made you

think he/she needed to be evaluated for the ASD

diagnoses.

How do you decipher between what is DS and what is

ASD?

Everything I have read is so vague. I can find a lot

about DS and a lot about ASD but not a lot about the

dual diagnoses??

nna

Mommy to Freddie 5 yrs

Full Inclusion Kindy

Started T-Ball!!

__________________________________________________

[Guest guest]

nna

http://www.altonweb.com/cs/downsyndrome/index.htm THis is the best site for

anything DS. On the left click on medical then when it opens click on autism/PDD

Hi....read as much as you can here and there are some articles (at least one) on

how to diagnose ASD in Down Syndrome. There are a few overlaps and then things

to look for specifically. Hope this helps.

Sherry mom to 18 DS-Aut who was just as bewildered (and still am:-) as you

are now. Don't feel alone!!!!

PS Here are some more I stole from Liz:-)

http://www.kennedykrieger.org/kki_staff.jsp?pid=1037

http://www.ds-health.com/piracet.htm

http://www.neurodiversity.com/down_syndrome.html

http://www.kennedykrieger.org/kki_research.jsp?pid=1800

http://www.kennedykrieger.org/kki_diag.jsp?pid=1072

http://www.bellaonline.com/articles/art33178.asp

http://www.downsyn.com/reading.html

http://www.neurodiversity.com/diagnostic_instruments.html

[Guest guest]

The biggest red flag for me was Kayla losing her language and her other

development plateauing or regressing. That shouldn't happen for even a

DS child. Development should go forwards (even if it's painfully slow!)

not stop or regress.

If something doesn't feel " right " , make an appointment with an

experienced developmental pediatrician. I'm glad I did. Even though I'm

not happy that Kayla has an additional ASD diagnosis, having one allows

me to move forward and that little piece of paper should help me get

additional services.

Hopt this helps!

Ecki

>

> Where did you start, how did

> you know. What did you see in your child that made you

> think he/she needed to be evaluated for the ASD

> diagnoses.

>

> How do you decipher between what is DS and what is

> ASD?

[Guest guest]

You will see the answer as you observe your son. When my son was in the

regular K class, he needed an aide with him to even begin to be in the same

room with the other kids. Does your son? Elie repeated and continuosly

cleared any horizontal surface. Does your son? My son had about 5 words at

age 5 - does your son?? My son was not toilet trained. How about your boy?

My son would flop to the floor and grunt or whine when he was

forced/encouraged to do something he didn't want to do. How about your

young man? Elie threw crayons and paint and even clay. What does Freddie

do? Elie liked to flap things like paper and string and stuffed animals.

He never played with toys - he categorized them or threw them. He liked to

sit and observe.

He never played t-ball and later on hated challenger baseball. He loves to

throw balls!!!

Does this give you a vague idea as to the differences? If you aren't seeing

most of this stuff - you probably don't need to worry about ASD. Why are

you???

BTW - it took us until age 10 to get a dx of PDD-NOS and until 12 to get a

doc to agree that more likely we were dealing with ASD. But we had all of

the signs I wrote of by age 5 and I thought so by age 4.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: So bewildered about DS/ASD

>Date: Mon, 23 Apr 2007 22:33:44 -0700 (PDT)

>

>I read all of these posts from all of you wonderful

>moms and am amazed at what you do for your kids and

>how well you know them. Where did you start, how did

>you know. What did you see in your child that made you

>think he/she needed to be evaluated for the ASD

>diagnoses.

>

>How do you decipher between what is DS and what is

>ASD?

>Everything I have read is so vague. I can find a lot

>about DS and a lot about ASD but not a lot about the

>dual diagnoses??

>

>nna

>Mommy to Freddie 5 yrs

>Full Inclusion Kindy

>Started T-Ball!!

>

>__________________________________________________

>

[Guest guest]

In a message dated 4/23/2007 11:35:10 P.M. Central Standard Time,

freddie5smommy@... writes:

What did you see in your child that made you

think he/she needed to be evaluated for the ASD

diagnoses.

i didn't even have a clue, we were at a then frequent behaivor difficulty

visit at the university hospital and they informed me nathan was autistic too,

he was around 4years old, so then after i read a few books on autism from the

disability resource library, it made sense, and was able to change gears at

home and school which with time and persistance and consistency, nathan has

pretty much outgrown most difficult behaviors.

How do you decipher between what is DS and what is

ASD?

basically i take it as an autistic child with down syndrome, nathan has all

the physical features of DS and the same health problems and developmental

delays of someone with DS, but everything else, weve gone through--the lack of

speech, transitioning difficulties,unable to deviate from routine, the ADD,

the OCD, the self injurious behaviors and repetitous behaviors and just

behaviors in general were nothing like the other children i knew with just DS,

other than that drop and flop wet noodle thing, that seems to be a DS universal

thing, lol. But like I stated above, we have trained nathan pretty much out

of most of these, as he has grown older, he still gets overstimulated and

rocks his body, or bang his head on the couch, still has mostly dangly toys

(woody dolls, monkeys, shoe strings by the hundreds, lol) that he takes

everywhere, and loves to watch his videos/dvds over and over,echolalia on

occasion, but

does talk when needed, but these are mild things that we live with without

difficulty, he is happy, we are happy, life goes on, shawna

************************************** See what's free at http://www.aol.com.

[Guest guest]

In a message dated 4/24/2007 1:35:10 A.M. Eastern Daylight Time,

freddie5smommy@... writes:

I read all of these posts from all of you wonderful

moms and am amazed at what you do for your kids and

how well you know them. Where did you start, how did

you know. What did you see in your child that made you

think he/she needed to be evaluated for the ASD

diagnoses.

Hi nna,

Our journey was so clear and vivid to me, yet murky at the same time.

Sounds impossible I know, but the mind does things you can't control.

Maddie was a very bright baby with DS, and all those at her EI program thought

she was the next *star* with DS. I breastfed her til 15 months, she was

physically almost at par, was starting to say words, at which point she

developed a URI, and promptly stopped eating. Naturally, we went to the ped

next

day....then a week later, then another week later. AT that point I was in a

panic because she was losing weight. So off to a diagnostic specialist at a

children's hospital here in PHilly. To make it short, we went through a

nightmare hospital stay, took Maddie home, and I have clear recollection of

trying to get fluids into this baby via a small vial, then by wet rags...it

was bad. Almost immediately upon recovery, she developed beyond weird

behaviors. Honestly, I think that was when I started saying this is NOT

just

DS. But then the autism reared it's ugly head, and we went through what I

call our year from hell. Had I been able to step back, assess the illness,

the behavior, the experience of the hospital stay, I might have been able to

*piece it together* earlier. But instead we were thrust in this world of

screaming, head banging, hurling and torture...so it took me a bit to see the

forest for the trees, as they say. Once we got a handle on what we were

dealing with, I *toyed* with the autism stuff. Got really shot down online

by the *professionals*, telling me that it would only hurt her to have that

label because of the *image*. So I figured Maddie had *autistic

tendencies*....sounds so nice, doesn't it? I knew in my heart honestly, the

entire

time. I however, had an epiphany when sitting at an IEP meeting, using those

words (TENDENCIES) and all stared at me....at which point I said, " well,

okay, I think she has it....autism ....yea.....) " These professionals who

fought me before....looked at me and said, " Yea, we do too " . Took a while

to

convince my wonderful, gorgeous, supportive husband (denial is such a great

defense). Anyway, the dx came easy. The one test Maddie scores incredibly

high in. I have to say though, I'm not bewildered by autism. I feel I

understand it, living with Maddie. I DO wish I could take it away. I DO

hate it. But it lives here, and I know it like my best friend that gets on

my nerves. Not sure I'm happy that I'm comfortable with it, but maybe

that's a good thing; I don't know.

Donna

************************************** See what's free at http://www.aol.com.

[Guest guest]

I just wanted to say thank you to everyone who took

the time to share their stories and advice about the

dual diagnoses. Just as I had hoped when I joined this

group, I have learned much here in just a few hours of

reading. You all are all wonderful.

nna

Mommy to Freddie 5 yrs

Full Inclusion Kindy

Started T-Ball!!

__________________________________________________

[Guest guest]

The defining moment for us was after we read the " Disability Solutions " issue

about dual diagnosis. After reading it, my husband & I were certain that our

son also was autistic. It is incredibly thorough, and we have copied it many

times to give to doctors, therapists & educators. You can find it at:

www.disabilitysolutions.org/newsletters/volume3.html It is Issue 5 & 6.

Carole, mom to , 11, ds/autism, g-tube, vision issues