Can I ask a favor from all of you

[Guest guest]

Hi! I am trying to get everyone straight on here but sometimes I get

confused. Is there a way that everyone can kind of post a little intro

about themselves and their children and what all dx they have. That way I

can save them so I know who goes with who. Thank you :-)

[Guest guest]

,

I am Donnell, mom to DJ, who is 12 years old with DS and Autism. I

live in Sacramento, CA. Many of us live on or nearer the east coast

and so you will note that those of us in California post much later

than the others. Really we are from all around the country and even

from other countries. When you get onto the home page, you can

click on the Database on the left of the page, go to " Us " and you

will see profiles of many of the members. We just recently passed

the 1,000 member mark, I understand.

I know what you mean about trying to get everyone straight, and then

some of us have children with the same names as others, tee-hee!

Gets confusing...but welcome to the group.

I know of 3 other people in my area with similarly diagnosed

children. Do you know of anyone in your area?

Hugs,

Donnell

>

>

>

> Hi! I am trying to get everyone straight on here but sometimes I

get

> confused. Is there a way that everyone can kind of post a little

intro

> about themselves and their children and what all dx they have.

That way I

> can save them so I know who goes with who. Thank you :-)

>

>

>

>

>

>

>

>

[Guest guest]

: Welcome to our group! My name is Liz, and I am the mom to Tori, 8

yrs. old. We are in the Lehigh Valley, in PA.

I actually just met another family with a child with a dual dx in the past few

weeks. I think we are on the right track. I plan on possibly starting a

sub-group within our local DS group for duals.

Liz

Re: Can I ask a favor from all of you

,

I am Donnell, mom to DJ, who is 12 years old with DS and Autism. I

live in Sacramento, CA. Many of us live on or nearer the east coast

and so you will note that those of us in California post much later

than the others. Really we are from all around the country and even

from other countries. When you get onto the home page, you can

click on the Database on the left of the page, go to " Us " and you

will see profiles of many of the members. We just recently passed

the 1,000 member mark, I understand.

I know what you mean about trying to get everyone straight, and then

some of us have children with the same names as others, tee-hee!

Gets confusing...but welcome to the group.

I know of 3 other people in my area with similarly diagnosed

children. Do you know of anyone in your area?

Hugs,

Donnell

>

>

>

> Hi! I am trying to get everyone straight on here but sometimes I

get

> confused. Is there a way that everyone can kind of post a little

intro

> about themselves and their children and what all dx they have.

That way I

> can save them so I know who goes with who. Thank you :-)

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

I think that is a good idea as there are some folks who are more verbal on here

so I " feel' as if I know them and others (like myself) who periodically post in

spurts, and still others that mostly lurk.? I oftne get folks confused and would

love a cheat sheet, especially because I am on a few lists.

I would be willing (although it may take time) to put it together in a file on

the website so newbies could be added and we would have a running list to refer

to.?

I will start.? I am in CT.? I have 4 children that I homeschool. My oldest 13

year old son had a stroke soon after he received a DPT shot, just prior to his

1st birthday.? He is ok now, just minor weakness on his right side, hardly

noticeable.? He does have some other muscle issues that we are continuing to

investigate, thought it may be some form of MD which I am told is not related to

his stroke...I am not so sure.?

My almost 10 year old daughter was a home birth and so far, has no diagnosis,

unless " thinks she is the mother " becomes a new medical term.? She is my biggest

helper and devoted to her siblings.

I then lost a daughter at 17 weeks pregnant.? After finding out about the loss I

went into labor about 5 days later, at home.? So, we have one angel in Heaven.

, also a homebirth, is 6 and has syndrome, a rare chromosomal

defect.? He has 3 of his 18th chromosome, however he is mosaic meaning not all

cells are effected.? He is doing awesome and surprises me everyday.? He is

pretty delayed cognitively but is so on the ball in other areas.? He is a puzzle

that I am enjoying working with (most of the time).?? He is still in diapers,

shows no interest in getting out of them.? He is very verbal (after a long time

with no speech) and knows exactly how to push my buttons, both the good and bad.

?Birgitta will be 5 next week (oh my goodness), looks about 2.? She is my reason

for being here on the list.? She has DS, autism, SID and Fetal alcohol

syndrome.? My husband and I adopted her when she was 12 days old.? She is truly

a piece of work, doesn't fit in anyones categories and never sleeps.? I mean,

she really does not sleep. She is just starting to realize that all the signs I

am doing have meaning and has learned 4 signs.? I must ask for them or initiate

most of the time but she uses them appropriately.... " more " , " all done " , " eat "

and " up " .? She is also babbling more and I think will be making sounds for words

soon. We have tried several avenues to help with the sleep issue and nothing has

helped.? I have tried herbal, homeopathy, message therapy, sensory diet, soft

sounds etc etc.? I finally went the drug route and have changed her meds 3

times.? Recently weaned her off trazodone and I must say, no meds seem to work

better right now.? She would get a tad " crazy " on the meds at night which made

for a very cranky, foggy, stupid mom the next day.? I am actually happy with her

just getting up every hour and " cuddling " back to sleep vs. the getting up every

hour and getting wild because of the meds.? I still search for answers to the

sleep issue and pray that someday soon it will get settled.

We recently moved to a bigger house with some land so I could do a special needs

pony program (Personal Ponies).? They need breeders and I thought it would be so

cool to breed for the program.? I also thought it would be great for my

children, especially and Birgitta, to learn how to care for the animals.

?Blessings,

homeschooling Mom to AJ (13),

(9), ^l^, (6, Trisomy 18 mosaic AKA

's syndrome) and Birgitta (age 4, adoption finalized 2/1/05 !!,

Trisomy 21 AKA Down's Syndrome, Fetal Alcohol Syndrome, Autism, SID)

----Original Message-----

To:

Sent: Tue, 1 Apr 2008 7:13 pm

Subject: Can I ask a favor from all of you

Hi! I am trying to get everyone straight on here but sometimes I get

confused. Is there a way that everyone can kind of post a little intro

about themselves and their children and what all dx they have. That way I

can save them so I know who goes with who. Thank you :-)

[Guest guest]

Hi ,

My name is and we are from Texas. I post every so often- not as much as

some, more than others.

We have a beautiful 10 year old son, who will be 11 in 6 weeks named

-Christian. His dual diagnosis is Down syndrome, of course, and autism.

We also have a beautiful little 2 year old daughter we adopted 10 months ago

with Down syndrome only. Her name is Tatiana.

Hope this helps!

Premont

Date: 2008/04/01 Tue PM 06:13:52 CDT

To:

Subject: Can I ask a favor from all of you

Hi! I am trying to get everyone straight on here but sometimes I get

confused. Is there a way that everyone can kind of post a little intro

about themselves and their children and what all dx they have. That way I

can save them so I know who goes with who. Thank you :-)

[Guest guest]

Hi . I don't post much but I read some.

My name is Pam and I live in Tn. I have 4 children. Two boys grown and gone on

their own and identical twins with Down Syndrome. The twins names are Hannah and

. They are 12 and will be 13 in June. has Autism also. It took me a

long time to get the dx. She is mildly effective. She is less verbal than her

sister. She likes to grunt at me when she wants something but I have been

working real hard to get her to say what she wants. She is doing much much

better.

It is hard to keep everyone straight on here. I have the same problem.

Pam

wrote:

Hi! I am trying to get everyone straight on here but sometimes I get

confused. Is there a way that everyone can kind of post a little intro

about themselves and their children and what all dx they have. That way I

can save them so I know who goes with who. Thank you :-)

[Guest guest]

Hi ,

I am Mom to Zeb, age 15, a high school freshman. I have two older adult

children. is 34 with two girls 15( a gift from college) & 12. Caitlyn is

28 with one boy 2, one girl 5 and two stepsons 8 & 5 that also live with her,

don't remember their biological mother. I have the same husband and have been

married way too long. I joined the group about seven years ago when I was having

major behavioral issues with Zeb and over the top with school issues. I am the

one member that really doesn't belong here. Zeb had some autistic tendencies but

not enough to be dual diagnosed. Most have faded since we have had school

problems under control and he has matured. The group let me stick around, so

far. I have a seasonal business that I started for Zeb 13 yrs ago. What was I

thinking? It takes mountains to move him. I have two food concession trailers. I

serve food at fairs and events. During the school year I am a stay at home Mom

and do parent advocacy work. I worked at an autism

school as a sub but was involved in a car accident last year, injured my knee,

so I didn't return this year. I have learned a great deal from this group and

found them to be a great sense of comfort and support. I try to give back when I

can, mostly help with school issues. I seem to be an effective advocate for

others but certainly haven't done very well for son other than pioneering

inclusion in my district. I continually face the attitudes and low expectations

from school. I have been working on due process for months and finally filed

yesterday, something I should have done years ago. The HS is more accepting and

free from retaliation that I most fear for Zeb. He has DS, maybe typical, if

there is such a description. He had heart surgery at 6 mos, has major anxiety

issues, OCD, sensory and fine motor issues. He had constant respiratory

infections that seem to fade at age 10. He is lactose intolerant, a big boy, 190

lbs,5 " 2 " , blues eyes, brown hair and hairy everywhere

else. He has good speech and aspires to be the next rock star, Zeb Zoober. I

listen to his singing for hours, no words, just a constant drone. I am blessed

to have a solid core door to his bedroom.

Charlyne

wrote:

Hi! I am trying to get everyone straight on here but sometimes I get

confused. Is there a way that everyone can kind of post a little intro

about themselves and their children and what all dx they have. That way I

can save them so I know who goes with who. Thank you :-)

[Guest guest]

Hey,

I am Trisha's mom. Trisha is a beautiful 16 year old young lady. Trisha

has multiple disabilities which include but not limited to: Down Syndrome, HOH,

Autism, Low Vision, Hypotonia, Apraxia, SID, Asthma, Dysarthria, fine and

gross motor issues and last but not least teenage hormone syndrome.

We use total communication to communicate with her and her with us. We are

always looking to improve ways to communicate both receptively and

expressively.

With Trisha all of her dx's come into play daily so there really is no

priority of one dx over another, we deal with the whole caboodle all the time.

:-)

Trisha also has Hidradenitis Suppurativa (HS) which is something else we

deal with on a daily basis as well.

Trisha was born with a small hole in her heart but it slowly started closing

on it's own and now all that is left is a slight murmur. She had eye

surgery when she was 8 months old, she had numerous tubes inserted into her

ears

and then had a T & A done when she was about 6 or 7. She had major knee surgery

when she was 5 and was in a wheelchair for several months (which is where she

fell in love with wheelchairs even to this day).

While Trisha still likes to rewind her movies she is not where as obsessive

as she once was with the rewinding but she still has to touch everything at

least once before bed, she still lines her stuffed animals in a certain way and

her movies has to be put away in a certain order as well as does her

coloring pages.

Trisha has a beautiful smile and a crazy sense of humor and likes to sit in

her room saying what sounds like " nuts " which is probably what she is calling

her mom. lol

We have periods of I guess what you might call growth or learning spurts and

then of course we have periods of leveling off but there is always progress

being made just in her own unique way.

Trisha also can have a meltdown from hell from time to time but no where

near like she used to have when she was younger.

She loves to give and receive lots of hugs and kisses but she is very picky

who she allows to hug or kiss her, fortunately I just happen to be one of the

ones she allows to give and receive hugs and kisses. :-)

Trisha has a grown brother who for most of her life she could not say his

name so he had no name as far as she was concerned now she calls him what sounds

like " abu " which we believe is a combination of and Brother or My

and Brother. But needless to say is very happy to have been finally

given a name by Trisha. :-)

We live in a very small rural area where we don't have any stores or fast

food places except for a mom and pop store and a couple of small gas stations.

Anywhere we go there is at least 45 mins or more driving time. All of her

therapies or doctors are anywhere form 45 min to a couple hours drive but we

have been very fortunate to get her on the MR waiver when it first came out

and we do utilize that for her assistive technology and respite when we could

find someone who was reliable, we haven't had respite in over 3 years now. We

stopped sending her to the camp she used to go to because they lost her and

when she was found she was in a creek hanging onto a branch with no clothes

on. CPS was notified and the Camp was found guilty of child neglect.

I have learned so much from Trisha and even with all the meltdowns and other

issues, she is a joy well ok, the poop issue is not so joyful but other than

that she is a joy! lol We are using a vibrating watch to help prompt her

to go to the bathroom and she does use depends that we get 4 cases a month

from medicaid. She also has a behavior consultant that works with her on

toileting issues and other issues as needed that we get through her MR waiver

as

well.

The current school she is attending is great, but as usual we are still

battling the SD constantly which seems to be a never ending issue. I am so

proud

of all of Trisha's accomplishments down to the tiniest ones. And if I had

it to do all over again, I would in a heart beat she is most definitely worth

it. :-)

Carol

Trishasmom

She isn't typical, She's Trisha!

In a message dated 4/3/2008 12:56:20 A.M. Eastern Daylight Time,

charlyne1121@... writes:

Hi ,

I am Mom to Zeb, age 15, a high school freshman. I have two older adult

children. is 34 with two girls 15( a gift from college) & 12. Caitlyn is

28

with one boy 2, one girl 5 and two stepsons 8 & 5 that also live with her,

don't remember their biological mother. I have the same husband and have been

married way too long. I joined the group about seven years ago when I was

having major behavioral issues with Zeb and over the top with school issues. I

am the one member that really doesn't belong here. Zeb had some autistic

tendencies but not enough to be dual diagnosed. Most have faded since we have

had

school problems under control and he has matured. The group let me stick

around, so far. I have a seasonal business that I started for Zeb 13 yrs ago.

What was I thinking? It takes mountains to move him. I have two food concession

trailers. I serve food at fairs and events. During the school year I am a

stay at home Mom and do parent advocacy work. I worked at an autism

school as a sub but was involved in a car accident last year, injured my

knee, so I didn't return this year. I have learned a great deal from this group

and found them to be a great sense of comfort and support. I try to give back

when I can, mostly help with school issues. I seem to be an effective

advocate for others but certainly haven't done very well for son other than

pioneering inclusion in my district. I continually face the attitudes and low

expectations from school. I have been working on due process for months and

finally

filed yesterday, something I should have done years ago. The HS is more

accepting and free from retaliation that I most fear for Zeb. He has DS, maybe

typical, if there is such a description. He had heart surgery at 6 mos, has

major anxiety issues, OCD, sensory and fine motor issues. He had constant

respiratory infections that seem to fade at age 10. He is lactose intolerant, a

big

boy, 190 lbs,5 " 2 " , blues eyes, brown hair and hairy everywhere

else. He has good speech and aspires to be the next rock star, Zeb Zoober. I

listen to his singing for hours, no words, just a constant drone. I am

blessed to have a solid core door to his bedroom.

Charlyne

<_samanthanicolesclossamanthanicosam_

(mailto:samanthanicolescloset@...) > wrote:

Hi! I am trying to get everyone straight on here but sometimes I get

confused. Is there a way that everyone can kind of post a little intro

about themselves and their children and what all dx they have. That way I

can save them so I know who goes with who. Thank you :-)

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

**************Planning your summer road trip? Check out AOL Travel Guides.

(http://travel.aol.com/travel-guide/united-states?ncid=aoltrv00030000000016)

[Guest guest]

Hi !

I know how you feel:)

I am Kris, who doesn't post very much but who has gained so very much

from this group.

My story is way too long for here so I will try for a snapshot

version, lol...

Prior to 1997, I was actively involved on the other side of the fence-

as an advocate, a parent educator and taught ages birth to age five

in a classroom setting (year round 5 days a week 6 plus hours a day)

at a non profit center. During my time teaching, all developmental

areas were addressed and individualized. So, I had many hats in the

closet-from SI to ST to PT to OT and so on. Training was provided by

both therapists and coursework at whatever university or

site..sometimes at our own expense. Over the years, I was fortunate

in being given carte blanche in my classroom. And so magic happened.

Creativity happened. Thinking outside the box happened.

I was also fortunate in that I observed and I listened to my (the)

parents and despite being pretty much a rebel gained the respect of

those professionals that I colloborated with.

In the summer of 1997, I had a son just out of college and another

son three years older but still living at home. So when I remarried

a widower with a 2 year old boy named DJ, it had been 20 years since

I had a two year old (who developmentally was really about 12 months

old). GULP.

It was hilarious and maddening. I had parents and therapists telling

me how lucky DJ was to have Ms Kris for a mommy. And all I could

think was " but he has therapists and teachers-he's never had a

mommy " . (His mommy died of cancer that was diagnosed shortly after

his birth)

So, I decided to take 6 months off work and just be his mommy & learn

stuff I no longer knew like diaper sizes and such.

After the 6 months, I decided to not teach. It was very hard but I

felt it was in everyone's best interests.

I thought I knew and understood where all my parents were coming

from. I soon discovered the truth. To this day I remember his three

year old IEP intake for public school. Because of who I was, it was

packed with all the right people and all people that I knew. People

who forgot completely the mommy factor. After I went home & cried, I

called them all and let them have it..I believe the phrase " knife

twisting into my heart " is still remembered. I hope so. For all

those parents that followed behind me.

Imagine my shock at how different public school was from the little

idyllic center where I had taught...

Over the years, I have had to learn about IEP's etc just like all

here. I have yet to have an IEP that is less than 3 hours long. I

have had very few occassions where a doctor didn't assume " Down

Syndrome " as the cause of some things.

As a result of many factors, there are no buddies, no respite, not

many who " get it " .

My husband does not have a clue re DJ. And so over the years I have

tried to protect his heart. My oldest son once told me that this is

a good thing for DJ. Because there would then always be one person

in DJ's life who only saw DJ-not a syndrome or any issues-just a

person named DJ.

DJ is now 12 going to be 13 in May. He was born with Down Syndrome,

a hole in his heart (now self resolved). From his paperwork, he also

had several hospitalizations due to jaundice, failure to thrive,

reactive airway disease and respiratory issues the first 6 months of

life. He did not walk until 18 months-2 years. He made few sounds

for two years and was very very thin until his thyroid stopped

working a couple of years ago (because drs would not listen to

me;instead saying down syndrome was causing lethargy & weight gain)

Currently, he is on medication for hypothyroidism, asthma/allergy

interventions.

DJ has moderate to severe hearing loss-intermittantly-due to

occlussion or " glue ear " . For some reason his bone age is advanced

by almost three years. He exhibits many behavoirs that appear

autistic like: such as rewinding, sameness/transitional issues, head

banging on his bed, night awakenings & not staying with group or

person to name a few. Some of these behavoirs are receding or

lessening but not all.

Although he would look at people, he never hugged or even stayed

around or acknowledged other people when he was younger. Forget

outings or birthday parties-only recent years can he do these. For

this I thank movies and my grandchildren and school outings. He did

not know how to communicate or smile or laugh or eat non baby food or

play when I came into his life. It took many many years for me to

teach these skills. I do not do fast foods but I danced a jig when

he ate his first chicken McNugget around age 8!

I spent months with his speech therapist to secretly teach DJ to

sign " Daddy " when he was two. Instead, his first word was " Mama " ...

I did not give birth to DJ but he is my baby, my heart.

Peace.

Kris