New to group

[Guest guest]

welcome mckenna and darah!! this is the place to be for ds-autsim or even autism

like stuff. sounds like you got a great start with the sensory integration!! as

for the sleep apnea, once nathan started on a cpap after a few weeks his

behavior did improve some, a lot calmer, and sleeps much better too, for about

2years now hes been using a bipap instead of a cpap which works just fine for

him. shawna, mom to nathan now 16years old, (, add-hd, ocd, ..........)

To: @...: powellfamilysa@...: Tue, 14 Aug

2007 19:00:20 +0000Subject: New to Group

Hi, I'm McKenna, Darah's mommy. Darah has Down syndrome and justturned three

last Saturday. It's a very scary thing for me to jointhis group. Darah does not

have an autism diagnosis, and I'm hopingshe is not autistic, but her sensory

issues are becoming harder andharder to deal with. She's very social and

engaging, maintainsperfect eye contact, but I know that the decrease of that can

comelater. Darah self-stims all day long and makes this throat noise allthe time

when she's awake and asleep. She has no verbal languageother than a few spoken

words, but signs over 60 signs. She has a lotof behavior issues. It's so hard to

isolate what is sensory, what istypical 3 year old behavior, what is

communication frustration, andwhat is maybe something more. I keep playing these

mind games " well,the throat noise will stop after her adenoiectomy later this

month, " " her behavior is probably because of her sleep apnea, " " her lack

oflanguage is probably because she was tube fed for two years and hasn'thad the

oral experience most kids have, " " her stimming is becauseshe's hypo-sensitive

and maybe also due to her sleep apnea. " I have a " reason " for everything she

does, but those reasons just aren't goodenough for me right now. We're doing

brushing and joint compressionaround the clock, every other hour, but I just

don't see that helpingat all.Half of me knows deep down that we're dealing with

something more thansensory integration disorder and wants to hurry up and just

get adiagnosis. The other half of me feels like she just has severe

sensoryissues and even if there is an autism diagnosis, it doesn't matterright

now because we're going to deal with her sensory needs the sameway with or

without a ASD diagnosis. Down syndrome for me is okay andsomething I can be

proud of...but it's very hard for me to get to apoint where I would be able to

say " it's okay that she's autistic. " It's just not okay for me...especially

since Darah's dealt with a lotmore than " run-of-the-mill " down syndrome already

in my opinion. Itfeels like everything that kids with ds are at a higher risk

for, shegets...so autism is definitely something I'm already paranoid about.

That and of course leukemia. (I feel like I keep jinxing myself byeven saying

I'm terrified of both!)I feel like my regular Down syndrome circle, which I

adore, just isn'tenough support right now and doesn't really get the severity of

thesensory issues Darah has and I feel isolated a bit with some of herstimming

and behavior issues. And it's hard for me to talk about thiswith my friends who

have kids with ds without similar issues because Idon't want anyone to think

less of my daughter because of theseissues. If you made it this far, THANKS!

I'll stop now! LOL! Iwelcome ANY AND ALL advice! McKenna (Darah's Mama 8-11-04)

_________________________________________________________________

News, entertainment and everything you care about at Live.com. Get it now!

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[Guest guest]

Howdy McKenna & Darah! Great to see you on here! I hope you find some

help with Darah's sensory issues here, I know they are really bothering

you and affecting her life. Wish the brushing & joing compression were

working better for you.

Has your OT talked about putting her on a sensory diet? When Laurie was

having all her sensory problems we went to the dollar store and bought

a bunch of sensory toys to redirect her stimming. Koosh balls, squishy

balls, nubby balls, silly putty, slinkys, other sorts of fidget toys.

We also did a lot of " sandwich " (stick the kid between two couch

cusions and squish), wheelbarrow walking, run and crash. She has this

weird Lycra sack that she goes in, too.

Good luck!

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

[Guest guest]

mcKenna: Relax. Saying the words don't make things happen. MAybe she does

have autistic traits, maybe autism and maybe everything is hooked to her

sleep apnea and eating issues. The surgery will hopefully help her

breathing/sleep and may affect her eating as well. Enough sleep may help

quell some of the behavior issues.

BUT - even having said all that- find a person who knows about dual

diagnosis and see if you can get her identified. IT will change how she is

taught and it will change how you think - at least it did for me. In our

house it was a relief - after 12 years of struggle- to finally know that

there was ASD and that our son had it . And yes, I will say SUFFERS FROM

ASD. There is no way I will minimize the affect that ASD has on my son's

life. True, I have adjusted to it, but I still feel that we live with an

elephant - some times a nice quiet elephant but it still takes up room and

space in our lives.

On the plus side, I don't apologize for my son's behavior - I just tell

people that he is having an " autism moment " . BTW - these have become fewer

as Elie has aged. HE is 22 yo now. When he was 3 and I was part of a DS

support group, people kept telling me that I needed to get control of my

child. I was an experienced mother of 5 kids at that time and couldn't

figure out why we were having such problems with Elie. Feeding, sleeping,

toileting, outings, dressing, bething - every single thing was a battle. Oh

yes - I forgot the battles over hair cuts as well.

Tell us where you live - someone is sure to know where there is a good

resource for you.

>

> Hi, I'm McKenna, Darah's mommy. Darah has Down syndrome and just

> turned three last Saturday. It's a very scary thing for me to join

> this group. Darah does not have an autism diagnosis, and I'm hoping

> she is not autistic, but her sensory issues are becoming harder and

> harder to deal with. She's very social and engaging, maintains

> perfect eye contact, but I know that the decrease of that can come

> later. Darah self-stims all day long and makes this throat noise all

> the time when she's awake and asleep. She has no verbal language

> other than a few spoken words, but signs over 60 signs. She has a lot

> of behavior issues. It's so hard to isolate what is sensory, what is

> typical 3 year old behavior, what is communication frustration, and

> what is maybe something more. I keep playing these mind games " well,

> the throat noise will stop after her adenoiectomy later this month, "

> " her behavior is probably because of her sleep apnea, " " her lack of

> language is probably because she was tube fed for two years and hasn't

> had the oral experience most kids have, " " her stimming is because

> she's hypo-sensitive and maybe also due to her sleep apnea. " I have a

> " reason " for everything she does, but those reasons just aren't good

> enough for me right now. We're doing brushing and joint compression

> around the clock, every other hour, but I just don't see that helping

> at all.

>

> Half of me knows deep down that we're dealing with something more than

> sensory integration disorder and wants to hurry up and just get a

> diagnosis. The other half of me feels like she just has severe sensory

> issues and even if there is an autism diagnosis, it doesn't matter

> right now because we're going to deal with her sensory needs the same

> way with or without a ASD diagnosis. Down syndrome for me is okay and

> something I can be proud of...but it's very hard for me to get to a

> point where I would be able to say " it's okay that she's autistic. "

> It's just not okay for me...especially since Darah's dealt with a lot

> more than " run-of-the-mill " down syndrome already in my opinion. It

> feels like everything that kids with ds are at a higher risk for, she

> gets...so autism is definitely something I'm already paranoid about.

> That and of course leukemia. (I feel like I keep jinxing myself by

> even saying I'm terrified of both!)

>

> I feel like my regular Down syndrome circle, which I adore, just isn't

> enough support right now and doesn't really get the severity of the

> sensory issues Darah has and I feel isolated a bit with some of her

> stimming and behavior issues. And it's hard for me to talk about this

> with my friends who have kids with ds without similar issues because I

> don't want anyone to think less of my daughter because of these

> issues. If you made it this far, THANKS! I'll stop now! LOL! I

> welcome ANY AND ALL advice!

>

> McKenna (Darah's Mama 8-11-04)

>

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

Welcome, McKenna! Just my opinion, but I would get your little one's medical

issues under control, then see how she behaves. If things remain the same, I

would definitely seek an ddx. Not feeling well, and not being able to

communicate that can bring on terrible behaviors.

Liz-Mom to Tori

Re: New to Group

mcKenna: Relax. Saying the words don't make things happen. MAybe she does

have autistic traits, maybe autism and maybe everything is hooked to her

sleep apnea and eating issues. The surgery will hopefully help her

breathing/sleep and may affect her eating as well. Enough sleep may help

quell some of the behavior issues.

BUT - even having said all that- find a person who knows about dual

diagnosis and see if you can get her identified. IT will change how she is

taught and it will change how you think - at least it did for me. In our

house it was a relief - after 12 years of struggle- to finally know that

there was ASD and that our son had it . And yes, I will say SUFFERS FROM

ASD. There is no way I will minimize the affect that ASD has on my son's

life. True, I have adjusted to it, but I still feel that we live with an

elephant - some times a nice quiet elephant but it still takes up room and

space in our lives.

On the plus side, I don't apologize for my son's behavior - I just tell

people that he is having an " autism moment " . BTW - these have become fewer

as Elie has aged. HE is 22 yo now. When he was 3 and I was part of a DS

support group, people kept telling me that I needed to get control of my

child. I was an experienced mother of 5 kids at that time and couldn't

figure out why we were having such problems with Elie. Feeding, sleeping,

toileting, outings, dressing, bething - every single thing was a battle. Oh

yes - I forgot the battles over hair cuts as well.

Tell us where you live - someone is sure to know where there is a good

resource for you.

>

> Hi, I'm McKenna, Darah's mommy. Darah has Down syndrome and just

> turned three last Saturday. It's a very scary thing for me to join

> this group. Darah does not have an autism diagnosis, and I'm hoping

> she is not autistic, but her sensory issues are becoming harder and

> harder to deal with. She's very social and engaging, maintains

> perfect eye contact, but I know that the decrease of that can come

> later. Darah self-stims all day long and makes this throat noise all

> the time when she's awake and asleep. She has no verbal language

> other than a few spoken words, but signs over 60 signs. She has a lot

> of behavior issues. It's so hard to isolate what is sensory, what is

> typical 3 year old behavior, what is communication frustration, and

> what is maybe something more. I keep playing these mind games " well,

> the throat noise will stop after her adenoiectomy later this month, "

> " her behavior is probably because of her sleep apnea, " " her lack of

> language is probably because she was tube fed for two years and hasn't

> had the oral experience most kids have, " " her stimming is because

> she's hypo-sensitive and maybe also due to her sleep apnea. " I have a

> " reason " for everything she does, but those reasons just aren't good

> enough for me right now. We're doing brushing and joint compression

> around the clock, every other hour, but I just don't see that helping

> at all.

>

> Half of me knows deep down that we're dealing with something more than

> sensory integration disorder and wants to hurry up and just get a

> diagnosis. The other half of me feels like she just has severe sensory

> issues and even if there is an autism diagnosis, it doesn't matter

> right now because we're going to deal with her sensory needs the same

> way with or without a ASD diagnosis. Down syndrome for me is okay and

> something I can be proud of...but it's very hard for me to get to a

> point where I would be able to say " it's okay that she's autistic. "

> It's just not okay for me...especially since Darah's dealt with a lot

> more than " run-of-the-mill " down syndrome already in my opinion. It

> feels like everything that kids with ds are at a higher risk for, she

> gets...so autism is definitely something I'm already paranoid about.

> That and of course leukemia. (I feel like I keep jinxing myself by

> even saying I'm terrified of both!)

>

> I feel like my regular Down syndrome circle, which I adore, just isn't

> enough support right now and doesn't really get the severity of the

> sensory issues Darah has and I feel isolated a bit with some of her

> stimming and behavior issues. And it's hard for me to talk about this

> with my friends who have kids with ds without similar issues because I

> don't want anyone to think less of my daughter because of these

> issues. If you made it this far, THANKS! I'll stop now! LOL! I

> welcome ANY AND ALL advice!

>

> McKenna (Darah's Mama 8-11-04)

>

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

I agree with Liz. had leukemia and many of these issues didn't become

obvious until he was feeling well. So if the other medical issues settle down a

bit you may see your real child, and she might either be having fewer of these

issues or more. 's energy level increased after treatment and so did his

stimming and sensory issues. He remained behind in toileting and language

despite the better health. We got the diagnosis a couple of weeks ago. It

doesn't change a whole lot, so no need to rush for one, but I think it was as

much a relief to know a reason for 's delays compared to other kiddos his

age with DS than it was a problem to hear autism. I wish he didn't have autism,

but most things get easier to cope with after fighting off leukemia. (And yes,

leukemia is awful, but you can get through even that.) And now I just think I

have both new determination to help my son and also more acceptance of his

limitations. He's sweet and full of love, and ALIVE, so I feel blessed.

I understand about the DS groups issue. It's hard to find people who understand

the problems you face, especially parents of young kids, who tend to be busy

hoping for evidence that they have a DS superkid. I advise you to hang out with

parents of older kids with DS who have had time and opportunity to experience

their kids' strengths and limitations. I'm afraid to even talk to parents of

babies with DS openly; facing a kid with DS and autism and leukemia is enough to

make them run screaming into the night. And yet I really love my son and my

life, most days. And follow your gut. You will get to a point where you'll

either just need to know (then go see a good developmental pediatrician or child

psychiatrist with experience in dual diagnosis) or you'll have those feelings

wane and not be worried anymore. And either way, you'll probably be right!

('s oncologist would admit a child on nothing more than a mother's gut

instinct that something was very wrong. He said mothers are usually absolutely

right.)

Sorry so long. Stick around here if it helps.

Beth, mom to , age 7, with DS, autism, and a leukemia survivor; also mom to

, 14, and , 11

[Guest guest]

Beth,

Having just been through a little Leukemia scare with our son Jake, I am curious

to know how you found out that he had Leukemia? What were his symptoms, etc?

Jake keeps getting this peticial bruising but his bloodwork is coming out okay.

We have had a lot of screaming, head slapping, and just angry type outburst, but

then again,, we have been traveling a lot.

Anyway, just cruious.

Thanks

Holly

Mom to Jake, 8 DS/PDD

Re: New to Group

I agree with Liz. had leukemia and many of these issues didn't become

obvious until he was feeling well. So if the other medical issues settle down a

bit you may see your real child, and she might either be having fewer of these

issues or more. 's energy level increased after treatment and so did his

stimming and sensory issues. He remained behind in toileting and language

despite the better health. We got the diagnosis a couple of weeks ago. It

doesn't change a whole lot, so no need to rush for one, but I think it was as

much a relief to know a reason for 's delays compared to other kiddos his

age with DS than it was a problem to hear autism. I wish he didn't have autism,

but most things get easier to cope with after fighting off leukemia. (And yes,

leukemia is awful, but you can get through even that.) And now I just think I

have both new determination to help my son and also more acceptance of his

limitations. He's sweet and full of love, and ALIVE, so I feel blessed.

I understand about the DS groups issue. It's hard to find people who

understand the problems you face, especially parents of young kids, who tend to

be busy hoping for evidence that they have a DS superkid. I advise you to hang

out with parents of older kids with DS who have had time and opportunity to

experience their kids' strengths and limitations. I'm afraid to even talk to

parents of babies with DS openly; facing a kid with DS and autism and leukemia

is enough to make them run screaming into the night. And yet I really love my

son and my life, most days. And follow your gut. You will get to a point where

you'll either just need to know (then go see a good developmental pediatrician

or child psychiatrist with experience in dual diagnosis) or you'll have those

feelings wane and not be worried anymore. And either way, you'll probably be

right! ('s oncologist would admit a child on nothing more than a mother's

gut instinct that something was very wrong. He said mothers are usually

absolutely right.)

Sorry so long. Stick around here if it helps.

Beth, mom to , age 7, with DS, autism, and a leukemia survivor; also mom

to , 14, and , 11

[Guest guest]

Hi, Holly. Leukemia presents in various ways, so 's story and another

child's with leukemia may be different. General symptoms are fatigue, recurrent

illness, headaches, bone pain, pallor, swollen glands, and I'm sure some others.

I noticed none of these symptoms, though, other than kept getting sick a

lot until he had petichia (for those who don't know, that's pinpoint red blood

spots under the skin) and it spread rapidly. I thought it looked systemic and

called the MD and then took him to the ER. Even the ER doc said he didn't look

that sick (though he was a quack). I had to insist on a CBC. His white count was

sky high and his hemoglobin and platelets were very low. His marrow (after a

bone marrow aspiration the next day) was 95% packed with leukemia cells. (Just 6

months before, he had a normal CBC and I am sure did not have leukemia then;

it's acute and comes on pretty fast.) By the way, he did not get any behavioral

problems leading to the diagnosis. If anything, he was quieter (fatigue). And

petichia isn't always leukemia. You can get it from being pinched or slapped or

catching your skin in something, or even crying hard. If Jake is having

outbursts, the petichia could just be from that. I'd be more concerned if the

petichia shows up in one place but within a day or two starts popping up in

other places, too. But I'd go ahead and repeat the CBC in a month or two just to

ease your mind and be sure.

Beth, mom to , age 7, with DS, autism, and a leukemia survivor; also mom to

, 14, and , 11

Re: New to Group

I agree with Liz. had leukemia and many of these issues didn't become

obvious until he was feeling well. So if the other medical issues settle down a

bit you may see your real child, and she might either be having fewer of these

issues or more. 's energy level increased after treatment and so did his

stimming and sensory issues. He remained behind in toileting and language

despite the better health. We got the diagnosis a couple of weeks ago. It

doesn't change a whole lot, so no need to rush for one, but I think it was as

much a relief to know a reason for 's delays compared to other kiddos his

age with DS than it was a problem to hear autism. I wish he didn't have autism,

but most things get easier to cope with after fighting off leukemia. (And yes,

leukemia is awful, but you can get through even that.) And now I just think I

have both new determination to help my son and also more acceptance of his

limitations. He's sweet and full of love, and ALIVE, so I feel blessed.

I understand about the DS groups issue. It's hard to find people who

understand the problems you face, especially parents of young kids, who tend to

be busy hoping for evidence that they have a DS superkid. I advise you to hang

out with parents of older kids with DS who have had time and opportunity to

experience their kids' strengths and limitations. I'm afraid to even talk to

parents of babies with DS openly; facing a kid with DS and autism and leukemia

is enough to make them run screaming into the night. And yet I really love my

son and my life, most days. And follow your gut. You will get to a point where

you'll either just need to know (then go see a good developmental pediatrician

or child psychiatrist with experience in dual diagnosis) or you'll have those

feelings wane and not be worried anymore. And either way, you'll probably be

right! ('s oncologist would admit a child on nothing more than a mother's

gut instinct that something was very wrong. He said mothers are usually

absolutely right.)

Sorry so long. Stick around here if it helps.

Beth, mom to , age 7, with DS, autism, and a leukemia survivor; also mom

to , 14, and , 11

[Guest guest]

My son's pediatrician(who we love), said Ethan did not have autism. But I

requested an appointment with a developmental pediatrician(which took us a year

to get into), just because I wanted a more detailed eval on Ethan's development.

They had myself and Ethan's two preschool teachers fill out some extensive

paperwork/questionnaires and we went over all of it at his appointment. I was

surprised at how quickly and fairly easily we received a diagnosis(except for

the waiting period to finally get the appointment with the Dr), but I think we

were probably just lucky. I had 2 of his therapists mention the possiblity to me

first, which was what got the ball rolling and me looking into a definite dx one

way or the other, although I did have a couple of people tell me " Oh he

definitely does not have autism " (his pediatrician and a friend of mine who is a

teacher). I am glad I did get the dx though because it gives me an answer to

certain things and I am glad there is a group out here like this!

(mom to Ethan almost 5 y/o with DS/Autism)from AZ

 

New to Group

Hello,

I am new to the group. I have a 12 year old child with DS and feel

that he may have autism as well. After reading everyone's posts for

a few days now I was curious as to how and who can give this

diagnosis? My pediatrician really hasn't been any help. I didn't

really think about my child having autism until he was 5. I

remember that when was about 3 he began speaking in short

words and singing songs like the Wheels on the Bus, etc. When he

was 5 stopped talking. It happened so fast, all within a

week, that it took my husband and I totally by surprise. When we

mentioned this to his pediatrician he didn't seem to be that

concerned. I also remember several things that happened at the same

time. I just had another child and I also remember

receiving his immunization shots at that time. I don't know if any

of this has any connection as to why he stopped speaking.

understands most of what we say to him he just cannot communicate.

He does not use sign language and has been using a picture

communication board for a few years now. He also has other

behaviors such as fixating on things that spin or recently he has

started going from room to room hitting on the walls with his

hands. It's really annoying and when I try and get him to stop he

goes right back to his odd behaviors. Sorry this is so long but

just wanted to know who I should take him to for an autism

evaluation.

________________________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from AOL

at AOL.com.

[Guest guest]

We got 's diagnosis from a developmental pediatrician. He too lost a lot of

language almost overnight. And a very sudden increase in stimming behaviors.

Beth, mom to , age 7, with DS, autism, and a leukemia survivor; also mom to

, 14, and , 11

New to Group

Hello,

I am new to the group. I have a 12 year old child with DS and feel

that he may have autism as well. After reading everyone's posts for

a few days now I was curious as to how and who can give this

diagnosis? My pediatrician really hasn't been any help. I didn't

really think about my child having autism until he was 5. I

remember that when was about 3 he began speaking in short

words and singing songs like the Wheels on the Bus, etc. When he

was 5 stopped talking. It happened so fast, all within a

week, that it took my husband and I totally by surprise. When we

mentioned this to his pediatrician he didn't seem to be that

concerned. I also remember several things that happened at the same

time. I just had another child and I also remember

receiving his immunization shots at that time. I don't know if any

of this has any connection as to why he stopped speaking.

understands most of what we say to him he just cannot communicate.

He does not use sign language and has been using a picture

communication board for a few years now. He also has other

behaviors such as fixating on things that spin or recently he has

started going from room to room hitting on the walls with his

hands. It's really annoying and when I try and get him to stop he

goes right back to his odd behaviors. Sorry this is so long but

just wanted to know who I should take him to for an autism

evaluation.

[Guest guest]

IMHO - find a developmental specialist, psychologist or knowledgeable ped.

IF you tell us where you are, we may have someone in that area who could

steer you.

My son hit walls with the back of his hand for years! I don't know exactly

when he stopped, but in the spring, I nitoced that he no longer had a callus

on the knuckle of his 3rd finger left hand. So he must have stopped

sometime ago. HE did it from age 10 until 21issh!!!! Odd behaviors, lack

of speech - especially loss so complete are all hints. How does he interact

with other children? How is his academic learning? Is he toilet trained?

All these and more are the questions that will be asked.

I think it is extremely helpful to know . there are certain stretegies

which work better to help our children. If we don;t know that they have

this dx, we don;t know what to expect.

>

> Hello,

>

> I am new to the group. I have a 12 year old child with DS and feel

> that he may have autism as well. After reading everyone's posts for

> a few days now I was curious as to how and who can give this

> diagnosis? My pediatrician really hasn't been any help. I didn't

> really think about my child having autism until he was 5. I

> remember that when was about 3 he began speaking in short

> words and singing songs like the Wheels on the Bus, etc. When he

> was 5 stopped talking. It happened so fast, all within a

> week, that it took my husband and I totally by surprise. When we

> mentioned this to his pediatrician he didn't seem to be that

> concerned. I also remember several things that happened at the same

> time. I just had another child and I also remember

> receiving his immunization shots at that time. I don't know if any

> of this has any connection as to why he stopped speaking.

> understands most of what we say to him he just cannot communicate.

> He does not use sign language and has been using a picture

> communication board for a few years now. He also has other

> behaviors such as fixating on things that spin or recently he has

> started going from room to room hitting on the walls with his

> hands. It's really annoying and when I try and get him to stop he

> goes right back to his odd behaviors. Sorry this is so long but

> just wanted to know who I should take him to for an autism

> evaluation.

>

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

Since your son is school age, you might speak with his teacher about your

concerns. Ask if your school district has autism specialists, and if the school

can arrange for one to come observe your son in the classroom. If the teacher

isn't of assistance, contact the diagnostician at your son's school, or go

directly to a director in the district's special ed department. You can also

make a written request for additional assessments. This may be a quicker way

than waiting a year for an appt. with another medical professional. Also, even

if you get an independent diagnosis, the schools will still have to do their own

assessment in order to recognize the autism and provide services for that

diagnosis.

When our son was diagnosed, we provided the developmental pediatrician, and

later, the school district, with a copy of the Disability Solutions issue about

DS/autism dual diagnosis. Both found it to be of much help, particularly since

some behaviors found in people with mental retardation and autism can overlap.

Good luck!

Carole, mom to , 11

[Guest guest]

I would suggest a developemental peditrician evaluation. welcome Laurie

To: @...: c-george1838@...: Wed, 22 Aug

2007 07:14:21 -0700Subject: Re:New to Group

Since your son is school age, you might speak with his teacher about your

concerns. Ask if your school district has autism specialists, and if the school

can arrange for one to come observe your son in the classroom. If the teacher

isn't of assistance, contact the diagnostician at your son's school, or go

directly to a director in the district's special ed department. You can also

make a written request for additional assessments. This may be a quicker way

than waiting a year for an appt. with another medical professional. Also, even

if you get an independent diagnosis, the schools will still have to do their own

assessment in order to recognize the autism and provide services for that

diagnosis.When our son was diagnosed, we provided the developmental

pediatrician, and later, the school district, with a copy of the Disability

Solutions issue about DS/autism dual diagnosis. Both found it to be of much

help, particularly since some behaviors found in people with mental retardation

and autism can overlap.Good luck!Carole, mom to , 11[Non-text portions of

this message have been removed]

_________________________________________________________________

Connect to the next generation of MSN Messenger 

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ltagline

[Guest guest]

Hi,

Welcome to the group. I am Donna, mom to five ranging in ages from 26

down to almost 14. Madison is our youngest, and was dx'd with autism at the

age of 5. I literally watched the onset of autism at age 2 however.

Maddie was dx'd by Dr. Capone, a developmental pediatrician at s Hopkins

who

heads the DS clinic at KKI. Maddie's autism is very blatant, and I am

one of the few who had no difficulty convincing anyone she has it.

Please feel free to ask any questions or share any stories. I, along

with Beth , co-moderate this list which is run by one of my best

friends in the world, Joan Medlen. You'll find folks on this list to be

incredibly supportive, non-judgmental, and eager to help in any way they can.

Again, welcome.

Donna

************************************** Get a sneak peek of the all-new AOL at

http://discover.aol.com/memed/aolcom30tour

[Guest guest]

When Kayla's neurologist found out that she lost a lot of language,

he wanted to do a 24 hour EEG to check for Landau-Kleffner Syndrome.

It's a VERY rare seizure disorder. The seizures occur during deep

sleep, so it's possible that seizures could go undetected. The main

symptom is sudden loss of language, sometimes overnight. Other

autistic like symptoms occur with it as well.

We haven't scheduled the EEG yet, I'm not totally convinced it's

necessary. There's only something like 200 cases worldwide.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

>

> We got 's diagnosis from a developmental pediatrician. He too

lost a lot of language almost overnight. And a very sudden increase

in stimming behaviors.

>

[Guest guest]

Wow, thanks for your information. I have never heard of that before. I will

definitely check into that too.

eckidatri wrote:

When Kayla's neurologist found out that she lost a lot of language,

he wanted to do a 24 hour EEG to check for Landau-Kleffner Syndrome.

It's a VERY rare seizure disorder. The seizures occur during deep

sleep, so it's possible that seizures could go undetected. The main

symptom is sudden loss of language, sometimes overnight. Other

autistic like symptoms occur with it as well.

We haven't scheduled the EEG yet, I'm not totally convinced it's

necessary. There's only something like 200 cases worldwide.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

>

> We got 's diagnosis from a developmental pediatrician. He too

lost a lot of language almost overnight. And a very sudden increase

in stimming behaviors.

>

---------------------------------

Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and

lay it on us.

[Guest guest]

What kind of different treatment would they do for Lanau-Kleffner

Syndrome? Is there a cure? Cyndi B

>

> When Kayla's neurologist found out that she lost a lot of

language,

> he wanted to do a 24 hour EEG to check for Landau-Kleffner

Syndrome.

> It's a VERY rare seizure disorder. The seizures occur during deep

> sleep, so it's possible that seizures could go undetected. The

main

> symptom is sudden loss of language, sometimes overnight. Other

> autistic like symptoms occur with it as well.

>

> We haven't scheduled the EEG yet, I'm not totally convinced it's

> necessary. There's only something like 200 cases worldwide.

>

> Ecki

> Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

>

>

>

>

> >

> > We got 's diagnosis from a developmental pediatrician. He

too

> lost a lot of language almost overnight. And a very sudden

increase

> in stimming behaviors.

> >

>

[Guest guest]

Funny how doctors tend as a group to lookk at horses and think ZEBRAS!!

Theya re reminded several times during medical school to think duck if

something quacks and not look for a quacking elephant.

>

> What kind of different treatment would they do for Lanau-Kleffner

> Syndrome? Is there a cure? Cyndi B

> >

> > When Kayla's neurologist found out that she lost a lot of

> language,

> > he wanted to do a 24 hour EEG to check for Landau-Kleffner

> Syndrome.

> > It's a VERY rare seizure disorder. The seizures occur during deep

> > sleep, so it's possible that seizures could go undetected. The

> main

> > symptom is sudden loss of language, sometimes overnight. Other

> > autistic like symptoms occur with it as well.

> >

> > We haven't scheduled the EEG yet, I'm not totally convinced it's

> > necessary. There's only something like 200 cases worldwide.

> >

> > Ecki

> > Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

> >

> >

> >

> >

> > >

> > > We got 's diagnosis from a developmental pediatrician. He

> too

> > lost a lot of language almost overnight. And a very sudden

> increase

> > in stimming behaviors.

> > >

> >

>

>

>

--

Sara - Life is a journey- we choose the path.

[Guest guest]

Yep, that's why I'm debating if we should bother with the 24 hour EEG.

But supposedly this rare disorder could be treated with seizure meds.

Not sure if it would bring her language back and help her autistic

behaviors. So, we might just go ahead and do it.

Ecki

Mom to Kayla (DS/ASD, 4/5/04) and Laurie (PDD-NOS, 7/12/01)

> >

> > What kind of different treatment would they do for Lanau-Kleffner

> > Syndrome? Is there a cure? Cyndi B

[Guest guest]

" ...just wanted to know who I should take him to for an autism

evaluation... "

Janie was evaluated by a child development specialist who referred her

to a child psychiatrist who dx'd her. Some doctors do not believe in

the dual dx. If you get one who is really negative, try a different

one. There are enough of us in this group to verify that it is

possible! Hope this helps.

P.

[Guest guest]

Welcome Nina and to all new members who have jumped aboard.

Hope you find some answers here or vice versa.

Glad to know you will not be alone on this journey.

WELCOME!

Nina, find out if there is a nurse practitioner where Dr. Rosenbaum

has referred your daughter to. Nowadays many medical professionals are

doing this, the Developmental Dr. will be in to observe but just will

not spend that quality time, it will at least a foot in the door if

done at this facility.

Has been experiencing any type of underlying medical issues?

Like ear infections, upper respiratory infections, fever,

constipation, sleep issues,etc. throughout her years.

Keep a food journal of what is eating and see if there any

pattern of behavior after each eating schedule.

One of the mom's whom I met had mentioned similar issues on what you

had mentioned, so she this with her son, while her son was on the wait

list with the Developmental doctor.

She had mentioned that I had left her curious now wondering if he had

some type of food intolerance and she wanted some answers.

She took a trial of eliminating first all Gluten food items, she said

she was surprised to how much he is coming along. Now, she is having

him seen by a GI doc, at least to rule out anything.

Another factor could be seeking for some sensory input.

Irma,19,DS/ASD

>

> I got the information about your listserve from the president of our

local Down Syndrome group, AA County Down Syndrome Connection

(AACDSC), here in land.

>

> My daughter (3 1/2) has Down Syndrome. She's an only child

right now, but we are in the process of adopting a little girl from

Guatemala. We may be getting her next month.

>

> We had a genetics appointment this past July with Dr. Rosenbaum from

Children's hospital. After discussing 's behavior issues with

him he said may have ADD & possibly PDD. He referred us to a

developmental pediatrician, but we couldn't get an appointment until

Nov. 28th. At this time we don't have a dual diagnosis, so the jury

is still out...

>

> We aren't sure what to think. will make all kind of gestures

with her hands either while looking at them, or watching TV (not

necessarily every day). When she seems stressed she'll balance on

her side, and kind of rock a little. Recently she's been getting

stressed in the evenings after dinner. She'll get in that position,

and look like she's going to start crying. If you address her then

she usually will start crying. On those evenings nothing out of the

ordinary happened. Same old routine. A couple of times this year she

had a complete " melt down " crying so hard she was screaming. One of

those times was when we saw Dr. Rosenbaum. It started as soon as we

got in the room to see him. Maybe that's why he suggested PDD!

>

> She's never had a problem with food textures, so she's been eating

what we eat for a long time now (unless she's just being a stubborn

toddler). However, lately she's keeps wanting to wipe her food off of

her tongue. Especially something like ice cream, or pudding.

>

> only says ma, dada, and na (?). She used to say mama, or

something close to mommy, but has now shortened it. She'll babble

from time to time, but in her own language. We start private speech

therapy a week from tomorrow.

>

> On the other hand makes great eye contact. She'll roll a

ball back & forth, and play other participation games with us. When

she's playing is when we see possible signs of ADD at times.

can be very aggressive. You'll be playing with her, and she'll get

this compulsion to start throwing her toys. Unfortunately, she wants

to throw them at you. Thankfully she seems to have stopped pulling

hair (mine & everyone else's). Last evening was " Back to School

Night " . I brought up the PDD for the 2nd time to her teacher, and she

just kind of shook her head like she's not believing Dr. Rosenbaum's

findings. goes to school 2 1/2 hours a day, 5 days a week, and

has had this same teacher Feb - Jun, most of Jul, and now again this

year. She's a great teacher with lots of experience. However, she

isn't seeing the same way we do at home sometimes.

>

> Forgive me if I'm incorrect on the examples I've given. I'm just

listing some things I've read as signs on several web pages.

>

> Thank you for any input you can give us,

>

> Nina

>

>

>

>

>

>

>

>

[Guest guest]

Nina,

Welcome,

sounds a lot like my son Jake at that age. He is now 8 with DS/PDD.

Talks and uses his hands. when I say talk I mean in his own jargon. He makes

great eye contact (although that sometimes stops for awhile). He plays with

kids when there are really small groups or just 1 other child. We got our

diagnosis at Kennedy Krieger Autism Center. It was petty involved but when I

finally got the final evaluations from everyone I felt that for the first time

someone really say Jake and all the things that we had been saying since he was

about 3. He was even younger when we started thinking things, but it was around

3 that we were sure. We just got out diagnosis last year. All the teachers

kept sying no way, he was " too social " etc. That is pretty much what all of us

got at some time or another. I am glad i went with our gut. I feel better

having the second diagnosis because I feel like it explains things for others

and helps us understand that we dont' always have to know why he does

things.....it is just the way Jake is wired.

Good Luck.

This place is so full of wonderful people with lots of experience and

understanding.

Holly

Oh, I am in PA, just on the MD border so we are fairly close.

New to group

I got the information about your listserve from the president of our local

Down Syndrome group, AA County Down Syndrome Connection (AACDSC), here in

land.

My daughter (3 1/2) has Down Syndrome. She's an only child right now,

but we are in the process of adopting a little girl from Guatemala. We may be

getting her next month.

We had a genetics appointment this past July with Dr. Rosenbaum from

Children's hospital. After discussing 's behavior issues with him he said

may have ADD & possibly PDD. He referred us to a developmental

pediatrician, but we couldn't get an appointment until Nov. 28th. At this time

we don't have a dual diagnosis, so the jury is still out...

We aren't sure what to think. will make all kind of gestures with her

hands either while looking at them, or watching TV (not necessarily every day).

When she seems stressed she'll balance on her side, and kind of rock a little.

Recently she's been getting stressed in the evenings after dinner. She'll get in

that position, and look like she's going to start crying. If you address her

then she usually will start crying. On those evenings nothing out of the

ordinary happened. Same old routine. A couple of times this year she had a

complete " melt down " crying so hard she was screaming. One of those times was

when we saw Dr. Rosenbaum. It started as soon as we got in the room to see him.

Maybe that's why he suggested PDD!

She's never had a problem with food textures, so she's been eating what we eat

for a long time now (unless she's just being a stubborn toddler). However,

lately she's keeps wanting to wipe her food off of her tongue. Especially

something like ice cream, or pudding.

only says ma, dada, and na (?). She used to say mama, or something

close to mommy, but has now shortened it. She'll babble from time to time, but

in her own language. We start private speech therapy a week from tomorrow.

On the other hand makes great eye contact. She'll roll a ball back &

forth, and play other participation games with us. When she's playing is when we

see possible signs of ADD at times. can be very aggressive. You'll be

playing with her, and she'll get this compulsion to start throwing her toys.

Unfortunately, she wants to throw them at you. Thankfully she seems to have

stopped pulling hair (mine & everyone else's). Last evening was " Back to School

Night " . I brought up the PDD for the 2nd time to her teacher, and she just kind

of shook her head like she's not believing Dr. Rosenbaum's findings. goes

to school 2 1/2 hours a day, 5 days a week, and has had this same teacher Feb -

Jun, most of Jul, and now again this year. She's a great teacher with lots of

experience. However, she isn't seeing the same way we do at home

sometimes.

Forgive me if I'm incorrect on the examples I've given. I'm just listing some

things I've read as signs on several web pages.

Thank you for any input you can give us,

Nina

[Guest guest]

Nina: Welcome!! The school will not do anything until you have a formal dx.

unfortunately. However, once you do get it, jump on every service available

through the school, county, etc. through their Mental Health Dept.

Liz-Mom to Tori 7.5 yrs.

New to group

I got the information about your listserve from the president of our local

Down Syndrome group, AA County Down Syndrome Connection (AACDSC), here in

land.

My daughter (3 1/2) has Down Syndrome. She's an only child right now,

but we are in the process of adopting a little girl from Guatemala. We may be

getting her next month.

We had a genetics appointment this past July with Dr. Rosenbaum from

Children's hospital. After discussing 's behavior issues with him he said

may have ADD & possibly PDD. He referred us to a developmental

pediatrician, but we couldn't get an appointment until Nov. 28th. At this time

we don't have a dual diagnosis, so the jury is still out...

We aren't sure what to think. will make all kind of gestures with her

hands either while looking at them, or watching TV (not necessarily every day).

When she seems stressed she'll balance on her side, and kind of rock a little.

Recently she's been getting stressed in the evenings after dinner. She'll get in

that position, and look like she's going to start crying. If you address her

then she usually will start crying. On those evenings nothing out of the

ordinary happened. Same old routine. A couple of times this year she had a

complete " melt down " crying so hard she was screaming. One of those times was

when we saw Dr. Rosenbaum. It started as soon as we got in the room to see him.

Maybe that's why he suggested PDD!

She's never had a problem with food textures, so she's been eating what we eat

for a long time now (unless she's just being a stubborn toddler). However,

lately she's keeps wanting to wipe her food off of her tongue. Especially

something like ice cream, or pudding.

only says ma, dada, and na (?). She used to say mama, or something

close to mommy, but has now shortened it. She'll babble from time to time, but

in her own language. We start private speech therapy a week from tomorrow.

On the other hand makes great eye contact. She'll roll a ball back &

forth, and play other participation games with us. When she's playing is when we

see possible signs of ADD at times. can be very aggressive. You'll be

playing with her, and she'll get this compulsion to start throwing her toys.

Unfortunately, she wants to throw them at you. Thankfully she seems to have

stopped pulling hair (mine & everyone else's). Last evening was " Back to School

Night " . I brought up the PDD for the 2nd time to her teacher, and she just kind

of shook her head like she's not believing Dr. Rosenbaum's findings. goes

to school 2 1/2 hours a day, 5 days a week, and has had this same teacher Feb -

Jun, most of Jul, and now again this year. She's a great teacher with lots of

experience. However, she isn't seeing the same way we do at home

sometimes.

Forgive me if I'm incorrect on the examples I've given. I'm just listing some

things I've read as signs on several web pages.

Thank you for any input you can give us,

Nina

[Guest guest]

I get surprise about the autism diagnosis from people all the time because

is social and makes eye contact and is very loving. I think a lot of kids with

DS get the " social gene " and it's just not wiped out by the autism, and lots of

people think social disorders are the identifying thing about autism. They don't

understand all the stimming, language delay, lack of imaginative and engaged

play, etc. Sometimes I still wonder about it, too. But it really does explain a

lot about .

Welcome!

Beth

New to group

I got the information about your listserve from the president of our local

Down Syndrome group, AA County Down Syndrome Connection (AACDSC), here in

land.

My daughter (3 1/2) has Down Syndrome. She's an only child right now,

but we are in the process of adopting a little girl from Guatemala. We may be

getting her next month.

We had a genetics appointment this past July with Dr. Rosenbaum from

Children's hospital. After discussing 's behavior issues with him he said

may have ADD & possibly PDD. He referred us to a developmental

pediatrician, but we couldn't get an appointment until Nov. 28th. At this time

we don't have a dual diagnosis, so the jury is still out...

We aren't sure what to think. will make all kind of gestures with her

hands either while looking at them, or watching TV (not necessarily every day).

When she seems stressed she'll balance on her side, and kind of rock a little.

Recently she's been getting stressed in the evenings after dinner. She'll get in

that position, and look like she's going to start crying. If you address her

then she usually will start crying. On those evenings nothing out of the

ordinary happened. Same old routine. A couple of times this year she had a

complete " melt down " crying so hard she was screaming. One of those times was

when we saw Dr. Rosenbaum. It started as soon as we got in the room to see him.

Maybe that's why he suggested PDD!

She's never had a problem with food textures, so she's been eating what we eat

for a long time now (unless she's just being a stubborn toddler). However,

lately she's keeps wanting to wipe her food off of her tongue. Especially

something like ice cream, or pudding.

only says ma, dada, and na (?). She used to say mama, or something

close to mommy, but has now shortened it. She'll babble from time to time, but

in her own language. We start private speech therapy a week from tomorrow.

On the other hand makes great eye contact. She'll roll a ball back &

forth, and play other participation games with us. When she's playing is when we

see possible signs of ADD at times. can be very aggressive. You'll be

playing with her, and she'll get this compulsion to start throwing her toys.

Unfortunately, she wants to throw them at you. Thankfully she seems to have

stopped pulling hair (mine & everyone else's). Last evening was " Back to School

Night " . I brought up the PDD for the 2nd time to her teacher, and she just kind

of shook her head like she's not believing Dr. Rosenbaum's findings. goes

to school 2 1/2 hours a day, 5 days a week, and has had this same teacher Feb -

Jun, most of Jul, and now again this year. She's a great teacher with lots of

experience. However, she isn't seeing the same way we do at home

sometimes.

Forgive me if I'm incorrect on the examples I've given. I'm just listing some

things I've read as signs on several web pages.

Thank you for any input you can give us,

Nina

[Guest guest]

The thing that I am realizing and now that I am reading more of Temple

Grandin, is that being social and making eye contact are only part of social

- how about appropriate social interaction (taking turns, sharing,

understanding facial cues or different social behavior in different places ,

reaching out to become a friend, etc.) knowinghow to react in church, when

someone falls dow, at a funeral, at a dance - these are all very different

and just being flirtateous and charming (my son for example) doesn't cut

it!!!

>

> I get surprise about the autism diagnosis from people all the time

> because is social and makes eye contact and is very loving. I think a

> lot of kids with DS get the " social gene " and it's just not wiped out by the

> autism, and lots of people think social disorders are the identifying thing

> about autism. They don't understand all the stimming, language delay, lack

> of imaginative and engaged play, etc. Sometimes I still wonder about it,

> too. But it really does explain a lot about .

>

> Welcome!

>

> Beth

> New to group

>

> I got the information about your listserve from the president of our local

> Down Syndrome group, AA County Down Syndrome Connection (AACDSC), here in

> land.

>

> My daughter (3 1/2) has Down Syndrome. She's an only child right

> now, but we are in the process of adopting a little girl from Guatemala. We

> may be getting her next month.

>

> We had a genetics appointment this past July with Dr. Rosenbaum from

> Children's hospital. After discussing 's behavior issues with him he

> said may have ADD & possibly PDD. He referred us to a developmental

> pediatrician, but we couldn't get an appointment until Nov. 28th. At this

> time we don't have a dual diagnosis, so the jury is still out...

>

> We aren't sure what to think. will make all kind of gestures with

> her hands either while looking at them, or watching TV (not necessarily

> every day). When she seems stressed she'll balance on her side, and kind of

> rock a little. Recently she's been getting stressed in the evenings after

> dinner. She'll get in that position, and look like she's going to start

> crying. If you address her then she usually will start crying. On those

> evenings nothing out of the ordinary happened. Same old routine. A couple of

> times this year she had a complete " melt down " crying so hard she was

> screaming. One of those times was when we saw Dr. Rosenbaum. It started as

> soon as we got in the room to see him. Maybe that's why he suggested PDD!

>

> She's never had a problem with food textures, so she's been eating what we

> eat for a long time now (unless she's just being a stubborn toddler).

> However, lately she's keeps wanting to wipe her food off of her tongue.

> Especially something like ice cream, or pudding.

>

> only says ma, dada, and na (?). She used to say mama, or something

> close to mommy, but has now shortened it. She'll babble from time to time,

> but in her own language. We start private speech therapy a week from

> tomorrow.

>

> On the other hand makes great eye contact. She'll roll a ball back

> & forth, and play other participation games with us. When she's playing is

> when we see possible signs of ADD at times. can be very aggressive.

> You'll be playing with her, and she'll get this compulsion to start throwing

> her toys. Unfortunately, she wants to throw them at you. Thankfully she

> seems to have stopped pulling hair (mine & everyone else's). Last evening

> was " Back to School Night " . I brought up the PDD for the 2nd time to her

> teacher, and she just kind of shook her head like she's not believing Dr.

> Rosenbaum's findings. goes to school 2 1/2 hours a day, 5 days a

> week, and has had this same teacher Feb - Jun, most of Jul, and now again

> this year. She's a great teacher with lots of experience. However, she isn't

> seeing the same way we do at home sometimes.

>

> Forgive me if I'm incorrect on the examples I've given. I'm just listing

> some things I've read as signs on several web pages.

>

> Thank you for any input you can give us,

>

> Nina

>

>

[Guest guest]

we are so glad to have more people join this list - especially

families with " older " kids.

My son Elie, is 22, now attends a center day/work program after various

interventions over the years. HE was included in school with an aid thru

4th grade, getting very unsuccessful after third grade (I refused to give

up!!!) and then self contained except for " specials " in middle school, which

was a comfortable time for him. H/S in our local district was not a good

fit . Nor was the center school inour district. So Elie went to a private,

state approved (and paid for) school for ages 15-21 in a neighboring

community. Then we moved and found out that in our new state, Elie

qualified for another year of FAPE. AND that in the new community he would

fit beautifully in a self contained (in the h/s) class with a teacher who

had many years experience with ds AND AUTISM!!! HE had the best year of his

life and grew tremendously. DId he pass SATS???? NO, but he became more

responsible, learned to use a schedule so he could plan and predict his own

life (as opposed to being given a schedule to follow) and he learned to work

and appreciate the benefit of working.

This led us to the Burnt Mountain Center where he spends his days at both

work (he stuffs newspapers for Sunday) and play (acitvity room and

basketball, bowling, mini golf, other opportuniuties to be a guy in town. I

think he likes his life most of the time.

Again, welcome to the conversation.

>

> Hi,

> I am and live in Gainesville, Florida with my husband, sons, dog,

> cat and snake. (14) has Down Syndrome and was diagnosed with PDD at

> age 7. His brother is Jonah, 9 - completely in love with his brother except

> the times he gets on his nerves...and my husband, Les. Jake goes to a center

> school where he is known by everyone and is a " big fish " . He is on the

> basketball team, a member of the monthly drum circle, went to last year's

> prom with a date, etc. We are generally pleased with the school as most of

> the teachers are invested in their students' progress and are warm and

> compassionate spirits. Our classroom teacher has a " contract " with our local

> CARD (Center for Autism and Related Disabilities) expert who visits with her

> once a month in the classroom and will visit whenever we need her.

>

> Sometimes I forget that Jake has Down Syndrome as the Autism part is

> always at the forefront of our challenges. is funny (very funny), is

> communicating better all of the time...tells us about most things but speaks

> in three word sentences and is generally quiet most of he time. He has a

> " droning " sound when he is self-stimming mostly when he is in the " playroom "

> playing with his trucks. He can be very loud when he is playing/stimming and

> has occasional incidents of almost psychotic-like behavior when he seems

> difficult to reach....we are trying Depakote now to see if he has been

> having subclinical seizures -- not much change except that now he sleeps

> completely through the night! We are still new to the medication, however

> and are hopeful we will even see more progress. Our list of interventions

> over the last 14 years is quite extensive (from gluten-free/casein free to

> homeopathic meds to inclusion to homeschooling to hippotherapy to ABA, etc.-

> but very little has changed.

>

> Jake is an amazing person who attracts so many people to him. Our guests

> for Christmas eve are an elderly couple who are virtual strangers but who

> fell in love with Jake at our supermarket who we have seen over the years

> (only at the market) but who light up every opportunity they have to see

> him. He is the " king " of the extended family as he was the first grandchild

> but also shares his light in such a way that others are truly warmed by

> him.'

>

> I look forward to hearing about other families and their lives, challenges

> and successes and hope to see some similarities with my son's experience of

> being in the world.

>

> Thiele

>

> _________________________________________________________________

> i'm is proud to present Cause Effect, a series about real people making a

> difference.

> http://im.live.com/Messenger/IM/MTV/?source=text_Cause_Effect

>

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