Hi I'm new

[Guest guest]

Hello Jane it's nice to met you Sammie is so lucky to have found

you! Sounds like you are a wonderful mother! If I was you, I would start off

by

trying to find more background on her birth mom/dad. I know with my sons

doctor it's a fight to get anything done but if it don't work then I change

doctors. Sounds to me she needs to be tested. You should start with your

doctor

and go from there. I know my insurance covers the evaluation but nothing else

after that. There are also, here in MD were I live, child programs for this.

In our state is called infants and toddlers program and then child find for

the other children. They both offer free help. Logan is just like Sammie,

knows what the is saying, understand everything and so on but just can't get the

words out. Logan drooled a lot when he was younger and even now at night.

Hope to talk to you again soon!

Hugs,

Cherilyn

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[Guest guest]

she was in about 9 differnt homes in her first 3 years. In Feb 2001

Sammie (2) was in a car wreck with her then foster mom who was

killed, and Sammie received a closed brain injury and fractured

skull.

My son also suffered from a closed head injury and a fractured skull. This

lead to him being diagnosed with an acquired brain injury by a neurologist

that specialized in brain injury. The injury affects behaviour, speech,

cognitive function...etc...any pre existing difficulties would also be made

much worse by the brain injury..so somebody with pre existing speech

problems or behaviour problems would have increased difficulties in these

areas. Has Sammie been seen by a neurologist that specializes in brain

injury? This would be VERY important due to the existing history.

Also...apraxia is very common in brain injured children...and some adults.

Annemarie

Silver and gold are purified by fire, but God purifies hearts.

[Guest guest]

Hi Jane

I'd have someone investigate that closed head injury too. Is there anyone who

can tell you if Sammie did those things prior to her living with you? That

would be interesting to know...

This is the right place for help. and everyone else here are just

fabulous.

Ped neurologist might be a great first step. Best of luck to you,

~Karyn

[ ] HI I'm new

Hi; Im Jane, I'm concerned that my daughter may have apraxia

and wonder how to get her diagnosed either with or without. Sammie

is 5 now. Her story is kind of long. Sammies Birth mom had severe

speech problems along with a great deal of abuse in the home. I

have no diagnosis for her. When Sammie was 1 she was placed in a

developmental program for overall developmental delays, as she grew

she has caught up in lots of areas and is only mildly delayed

(between 48 and 50 months in most areas) however her speed and motor

skills are still on a 3 year old level. As Sammie grew her speech

difficulties became more and more apparent. It did not help that

she was in about 9 differnt homes in her first 3 years. In Feb 2001

Sammie (2) was in a car wreck with her then foster mom who was

killed, and Sammie received a closed brain injury and fractured

skull. She came home from the hospital with her Maternal great

aunt, and was placed with us in August 2001 16 days after her 3rd

birthday. She has received speech therapy at the preschool and

receives therapy in her new prek at the elementary school (we

delayed kindergartern by a year to increase her readiness). Sammie

was diagnosed with incipient reactive attachement disorder and

oppositional defiant disorder, ADHD was ruled out. Her speech

therapist at the preschool mentioned that she believed Sammie might

be apraxic, but never to my knowledge arranged for testing or made

that diagnosis. Sammie knows lots of words, and understands them,

she just can't say them. for example she tries to say normal and

says norman, she says her name is mantha, has trouble forming w t, s

and many other sounds when she is using them in a word. But if you

ask the sound of each letter she can someimes produce them. There

are words you actually see her struggling to make her mouth say. If

you try to show her i.e. put your tongue behind your teeth like

this, she cannot do it but insists she is. When she eats something

like a gum ball she drools all over herself, she used to hoard food

in her mouth. She would finish dinner and 30 minutes later you

would see her chewing something and it would be her dinner. We used

to have to lift up her tongue and look under it to see if the food

was gone before we let her leave the table. She constantly chews on

her blanket, we buy toothbrushes and leave them around so she has

something more appropriate to chew. She often chews with her mouth

open but seems surprised when we point out it is open as if she did

not realize it. How and who can make a diagnosis of apraxia?

By the way I am an older mom, I have Sammie who is 5 and a 9 year

old adopted son who is PDDNOS/ADHD/ODD. I have been able to find

out alot about my sons autism and successfully advocate for him but

I can't advocate for Sammie because I am not sure what is going on.

I push for speech and OT and we have general goals, but I need to

know for sure what we are dealing with to be most effective.

[Guest guest]

Thanks everyone, Since Sammy's accident happened while she was in

foster care, social services started a lawsuit to recoup medical

costs. When we adopted Sammy we were substituted in the case and the

attorney and I have been trying to get Sam evaluated. However no one

wanted to refer her as she was speech delayed ( attributed to her

mother having speech problems (genetic) and failure to thrive and

being overall delayed before the accident and she was making

progress) The attorney said he had a pediatric neurologist in

Rochester that would see her but he has yet to set up the

appointment. I just want to be sure of her diagnosis so I can

ensure that she gets proper therapy. Her IEP gives her 2 hours of

speech a week and an hour of OT. The SLP is having the OT work in

facial muscle movements along with the overall OT work which is

helpful. Sam is currently in preschool at the local public school

which is really a wonderful school. Teachers are very caring and in

fact the entire school has become a part of the All Kinds of Minds

program. Where the teachers are taught to evaluate the learning

styles of each child and tailor their teaching methods to meet those

needs. Sams school SLP is the same as her big brother Jimmy's He is

PDD/NOS(Hyperlexic/semantic pragmatic disorder) ADHD/ODD. The

classes are small and he has been mainstreamed since kindergarten.

He is now in danger of becoming the class clown as his social skills

are blossming with all their support. Sammie has 12 in her

preschool class Jimmy has 17 in his 4th grade class. Those are the

average sizes in our school, our community is very small. However

if the school chose they could put all 32 kids in one class and do

away with a teacher, but they prefer to maintiain smaller class size

which I appreciate as a parent. The other plus is everyone knows

everyone so no one is going to get away with not doing what they

should, meaning teachers, administrators, and kids. Do you have any

ideas for what I can do at home to help improve her speech. We

already model correct speech and when she has difficulty forming

some sounds or words we show her how we move our mouth and tongue

and actually help her to physically move her mouth and tongue into

the right position. She is a chatterer, never shuts up,to the point

that we have to tell her to be quiet sometimes, I hate to do it bu

she would talk 24/7 otherwise, including screaming, singing and

mimicking her brother to his distraction. I know I should have more

patience especially with her speech problem but sometimes I just

cannot take it, she argues over everything, she asks constant

questions that she knows the answer to or thinks she does, then

argues when you answer is different than what she wants to hear. I

took her to an Autumn festival Sunday it was a 25 minute drive she

asked me (I counted) 56 times " We get apples there? The answer was

yes Sammy we will get apples there. Since it was just me I didn't

say anything, but when it is her brother and her Dad it makes them

crazy when she repeats over and over. I don't think it is a speech

thing I believe it is attention issues since she had so little

before she came to us. I hope as time goes by she will not be so

needy of constant affirmation that she has our attention. But I am

worried that being told to be quiet will affect her willingness to

speak, though I think given her daily output it is not likely LOL.

Thanks again for welcoming me and letting me unburden.

[Guest guest]

Hi Ally,

maree here again from NZ. I think you live on the Gold Coast -is that

right? We are flying to Brissy on Tues 4 April & have 5 weeks in Qld

so maybe a chance to meet up? Will be traveling up to Inisfail (our

daughter lives nearby) & coming back south on the 6 May so that would

suit us best. You can emial me direct if you wish.

Bye for now

Maree

>

> Welcome aboard,

>

> hi Im Ally,I only found this web site about a month ago,Im 38 with

4 children 2 have bleph we have never seen any one else with this

condition.I was so emotional when I found this site.Looking through

the photos of all the others people with this condition was like

finding an extended family.

>

> I live in QLD Australia.I havnt put any photos on this site yet but

hope to shortly.This is a wonderful site,with lots of info,any loads

of helpful people.l look forward to hearing from you.

>

> bye Ally.

> blepharophimosis Hi I'm new

>

>

> Hello Out there! I just found this website! I'm excited! I'll be

31 in

> May and I havn't met another soul with Blepharophimosis! I'm not

sure

> what I expect to find or learn through this experience, I guess

I'm

> just curious.

>

>

>

>

>

>

[Guest guest]

Toni what part of Texas are you from.

I live in Alice.

Clare

Check Out the new free AIM® Mail -- 2 GB of storage and industry-leading spam and email virus protection.

[Guest guest]

I used to be a Texan, born in Ft. Worth in

1927, grade school in Orange,

high school in Houston, and college at Texas A & M. I left in 1948

right after college and have lived in Washington State

ever since. God bless.

From: Rheumatoid Arthritis

[mailto:Rheumatoid Arthritis ] On

Behalf Of whitedove007@...

Sent: Thursday, October 05, 2006

6:16 PM

To:

Rheumatoid Arthritis

Subject: Hi

I'm new

Toni what part

of Texas are

you from.

I live in Alice.

Clare

Check Out the new free AIM®

Mail -- 2 GB of storage and industry-leading spam and email virus

protection.

[Guest guest]

Hi neThank you for your message. I have been talking to her more about her Aspergers since coming to this group, and she does open up to me which is good, and her Mum has thanked me for the support I have given Marissa about when she was going to throw away her college course. Marissa has just told me that she is just awaiting an apprenticeship in bricklaying so once she gets that I think she will feel better about her course. I have even given her a job of building me a wall in my garden once the better weather comes, so she is pleased with that.I hope they do stay together as she is a lovely girl and good for my Son, and we all get on so well with her, and her family.I live in a small village near Halifax West Yorkshire, we have lived here 24 yrs in the same house, it is an

old stone built terraced with 3 floors. We are surrounded by hills ( the pennines).Some of the posts on here I can't relate to with not having a Child myself with Aspergers, but I keep reading the messages to give an insight of what actually happens when a child has a meltdown and how you parents deal with it, so I am getting some tips from this group. CarolynFrom: susanne hansen <s_hansen34@...> Sent: Tue, 25 January, 2011 2:51:20Subject: Re: ( ) Hi i'm new

Hi Carolyn,

It is so nice of you to want to reach out to her like you are. I'm sure it means a lot to her and your son that you are so opened minded and willing to find out what Asperger's is all about and not automatically judge her.

Even if your son and her don't end up staying together, I'm sure your son will be forever grateful to you.

If she does ever have an outburst with your son or in your presents the key is to try not to take anything personnal and to try to stay calm yourself. It is best to wait for the situation to defuse before you try to talk about whatever the issue was. Hopefully this will never happen, but it's best to know how to handle it if it does so you you will be prepared.

You said you are from the UK? Can I ask from where?

ne

From: carolyn <crlyn_whittaker@...>Subject: ( ) Hi i'm new Date: Wednesday, January 19, 2011, 9:14 PM

Hi EveryoneI've joined your group, to try to find out more about Aspergers.I hope you will take me under your wings as it isn't actually my children that have it, but my Son's girlfriend MarissaShe told me she has Aspergers, but I was afraid of upsetting her by asking what it entails as this is all very new to me.Her Mum has told me briefly about some of her symptoms, and since I have noticed a few.Her mum says she doesn't show her feelings very well, yet she is very loving towards my Son and esp my Baby Granddaughter.Sometimes we can be sat in the lounge and she is very quiet, at first I thought she was shy, but her mum says this is her way.I get on really well with Marissa and she is a lovely girl.Marissa is at college doing brick laying, and also is training to be a boxer.This week she was on about leaving college as she is struggling with the theory side of it, but both her mum and myself have reassured

her we will help her get through this, and she actually has a meeting with her tutor today to see if they can get her extra help.So what I'm really asking is how best I can offer help and support to her by having a better understanding of what her condition entails by reading and listening to you all in this group.Thank you.

[Guest guest]

Hi MeaghanThank you for that it means a lot to me to know that even though Marissa isn't my daughter most of you have taken the time to reply to me and offer advice and support.If a girl or her family won't accept any of your sons then there not worth knowing as I see it if you care for someone you will accept them no matter what, nobody is perfect. Me being in this group has helped me understand about Marissa's condition a lot more and what it entails.I know her Mu has told me about when she has a meltdown see Ive learnt that word on here Lol at home what it is like, but she hasn't had one here, but at least now I will know how to help defuse the situation from all the advice I have received from this group.You all seem very supportive of each other on here and thats

good. CarolynFrom: Meaghan Larson <meaghanlarson@...> Sent: Mon, 24 January, 2011 4:06:27Subject: Re: ( ) Hi i'm new

Carolyn , i wish their were more people in the world like you , even tho she is not your daughter , you cared enough and had enough compassion to learn about her disorder!! I have three boys , and i often think if they ever meet a girl what they will be like , and what her parents will think of my son..... i can only hope that if they do find a special girl , that her parents will be as open minded and loving as you are!!! MeaghanFrom:

carolyn whittaker <crlyn_whittaker@...> Sent: Fri, January 21, 2011 7:15:40 PMSubject: Re: ( ) Hi i'm new

Thank you for your response Robyn it means a lot.

Carolyn

From: and/or Robin Lemke <jrisjs@...> Sent: Fri, 21 January, 2011 3:10:33Subject: Re: ( ) Hi i'm new

That's awesome that she got good results back. Ya know, if we all had good, decent, accepting people in our lives, imagine how nice it would be.......sigh.

(Oh....and I'm s' wife, Robin. We just have both of our names on the "title". he he)

Robin

"Normal is just

a cycle

on a washing machine....."

From: carolyn <crlyn_whittaker@...>Subject: ( ) Hi i'm new Date: Wednesday, January 19, 2011, 8:14 PM

Hi EveryoneI've joined your group, to try to find out more about Aspergers.I hope you will take me under your wings as it isn't actually my children that have it, but my Son's girlfriend MarissaShe told me she has Aspergers, but I was afraid of upsetting her by asking what it entails as this is all very new to me.Her Mum has told me briefly about some of her symptoms, and since I have noticed a few.Her mum says she doesn't show her feelings very well, yet she is very loving towards my Son and esp my Baby Granddaughter.Sometimes we can be sat in the lounge and she is very quiet, at first I thought she was shy, but her mum says this is her way.I get on really well with Marissa and she is a lovely girl.Marissa is at college doing brick laying, and also is training to be a boxer.This week she was on about leaving college as she is struggling with the theory side of it, but both her mum and myself have reassured

her we will help her get through this, and she actually has a meeting with her tutor today to see if they can get her extra help.So what I'm really asking is how best I can offer help and support to her by having a better understanding of what her condition entails by reading and listening to you all in this group.Thank you.