Hi - new to group

[Guest guest]

Hi! My name's Kathy and we live in ville, FL - currently

waiting for Tropical Storm Fay to pass! My kids are (16) and

Kara (5) who has DS.

I have been asking doctors, therapists, teachers, etc... for the past

few years about the possible dual-diagnosis for Kara but have

continued to be told " no way " . Kara is very affectionate to SOME

adults (I don't know how she chooses people) but she'll " choose "

someone and go up to them and give them a huge hug.

My concerns relate to the following:

- repetitive motor behavior (teeth grinding)

- non-communicative (including little signing)

- no play with other children (at all)

- no imaginative play (at all)

- repetitive play with toys that talk/make music (for hours if we

let her)

- acts as if deaf (most of the time)

- little to no focus

- short attention span

- chewing on things

- little to no eye contact

- sometimes staring at lights

There are times when Kara seems so " on " - where you can " talk " to her

and she'll respond in some way. But many times it's like you're a

million miles away. I guess I've attributed this to thinking about

her developmental age ( " that's normal for a 2 year old " thinking).

The above was really hard for me to write cause I always try to focus

on what Kara CAN do rather than what she " can't do " . Sigh.. I've

continued to say that she has a lot of different sensory processing

disorders but it just " hit me " again about the possibility of

DS/Autism (after reading Joni's post about on another

website). I sent her an e-mail and she suggested I join this group.

Oh, and NO, I don't WANT this additional diagnosis for Kara but, if

it can open doors for her that have not yet been opened then I am

definitely wanting to do that!

What has complicated all of this with Kara is that she was very ill

the first 4 1/2 months of her life. In a nutshell, she had stomach

surgery (duodenal atresia) at five days old and was doing great until

3 weeks old when she went into heart failure. She had contracted a

hospital-acquired super-bug infection. She ended up having open-

heart surgery at 2 1/2 months of age. All told, she was on a

ventilator for 3 months and 2 days, had peritoneal dialyis cause her

kidneys were failing, and had LOTS and LOTS of heavy-duty

medications. Also, when Kara was about 2 years old she was diagnosed

with moderate/severe hearing loss in one ear and mild/moderate in the

other. Well, she just had her first ABR test about a month ago and

we found out that her hearing is NORMAL in one ear and mild/moderate

in the other. Since last month, I've been thinking she must have an

auditory processing disorder and have been reading " When the Brain

Can't Hear " . Her Audiologist said (according to the receptionist)

that it's just that she has DS - which I KNOW is not true! Yes, I've

got a call into the Audiologist to discuss further.

So, I believe that many, including ourselves, have thought that she

acts differently than most kids with DS because of her difficult

first few months of life????? Could that be it? Or, is it possible

that she also has autism????? She did have a MRI of her brain when

she was about 2 1/2 years old - the geneticist requested it cause she

wasn't " progressing " as normal kids with DS. It did show some subtle

brain injury (from when she was so sick) but he said that would heal

and we'd see " improvement " . Yes, she's progressing but we're seeing

these characteristics (like teeth grinding) that we didn't see

before.

Sorry this has gotten so long. I have always looked at Kara as " our

puzzle " and I'm not really sure what next steps to take. Oh, I even

took her about 1 1/2 years ago to our local Autism Center for them to

see her and they just commented about her DS. In reading everything

I've read since last night, I guess this is common?

I did send the Director of our local DS Center an e-mail today asking

her thoughts and where, locally, I should go. I also know of a

little girl who lives about 1 1/2 hours away who was recently

diagnosed with DS-Autism (was just told of her last week).

Any thoughts/suggestions for us? Thanks so much!

Kathy

P.S. It was recognized about 1 1/2 years ago that Kara definitely

had sensory integration issues (we had a new OT who specialized in

that). She worked with Kara for about a year and we did see lots of

improvement - mainly, not just wandering around like " where am I " all

the time. She has since moved out of town.