Re: new member seeking help and info

[Guest guest]

In a message dated 7/9/2006 6:38:54 PM Eastern Standard Time, esullivan.home@... writes:

(5) Is there anyone else we should see besides the pediatric neurologist? Rory McLean mentioned to me a "MFE." Any advice?

Well, if you survive the visit with Witznitzer (lol), you will be ahead of the game.

An MFE is something you put together when your son turns 3 and enters school. It is a "multi-factored evaluation" and means just evaluations from a variety of areas put together to provide a profile of your child. You will use this to write an IEP - Individual Education Plan - with which the school will use to provide services to your child and with which you will gauge progress or lack of.

I agree that ST once a week is not going to cut it. The best advice I would give someone in your place is to borrow or purchase a good book on early intervention for autism. My recommendation is: "Behavioral Intervention for Young Children With Autism: A Manual for Parents and Professionals " by Maurice, etc.

You can usually find this on amazon and other bookstores as well as sometimes on ebay. It is well worth the cost as it outlines how to set up a good home program including a curriculum that you can use. Mine is in pieces, well used and overly loved by several people after I used it.

I do think pushing or forcing change is going to cause an outcry. It's always hard to go from what works and is easy to something that is much harder. But I would not let that stop you. I would push for words since he can speak them and praise and reward even an attempt at first, getting pickier about how well he says it as he improves. Remember that intermittent reward is the best so if he knows you sometimes give in, he will know your number and hold out. So be consistent.

In addition, you can provide picture cues to help him both say the word and point to it if he can't come up with the word right away. Sometimes word recall can be hard for some kids. Reading to him is GREAT! If he is using echolalia, that is great also (although very annoying, I know!) So don't stop doing such things. Just read with more purpose - start asking basic word recognition while you read instead of the story or in addition to it. You can often put together your own ABA program and make great use of storytime!

It is too bad that early intervention is so lame. It was lame here too (medina.)

Welcome!

Roxanna ôô“If you’ve told a child a thousand times and he still does not understand, then it is not the child who is the slow learner.â€Walter Barbee

[Guest guest]

Hi, Eileen!

I am new here too. My name is Suzanne Shaft and I live in Macedonia, OH. I have two sons on the spectrum -- one high-functioning, one with moderate Autism...the latter son cannot speak (he'll randomly say a word or two and then not again for months), so I'd take the echolalia! My oldest son does that...it's a little disconcerting sometimes, but I've been told it's a good thing too. It's a tool they use because they know they are supposed to say something back to you, and they can't quite find the right words, so they use something they've heard before whether it's conversationally appropriate or not. Eventually, some social skills training when he's a little bit older might help cut back on that. So, please don't feel bad about reading to him! That's always a good thing!

Some thoughts I had:

Are you required to see Dr. Wiznitzer? When we were trying to get a diagnosis for our youngest son, he wasn't even seeing patients. So, we went to Dr. Jane Holan at Rainbow. I don't know if she's in your insurance plan, but we did not have to wait long at all to see her - comparatively speaking. She was good, but it's my opinion that most developmental pediatricians and the like will just tell you what the diagnosis is and send you on your way. Dr. Holan did give us a lot of written information, websites, names and addresses of places to seek help -- which was nice once the dust settled from the initial shock of hearing a doctor tell us our boy had Autism. Things like that can aid you in figuring out what the course of treatment should be for him, but perhaps someone at Help Me Grow could be persuaded to hook you up with someone who could help -- or maybe even the doctor. A social worker might be able to help you find out what services are available -- I know Akron Children's Hospital's Autism Program offers that assistance. I'm thinking of trying that myself!

I don't know of any specific training classes for parents on speech therapy principles. If you have a good therapist, ask for exercises to do with your son. I did that for my oldest boy because of summer break. We have something to do every day with him. Pick the therapist's brain -- get information and exercises from him or her.

How about picture cards for the communication issues? At school, my youngest has a "snack board" with all kinds of pictures of his snacks on it. He picks the card that has the picture of the snack he wants off the board and hands it to his aide. Then, he gets that snack. He won't accept this method at home, interestingly enough, so here we have to let him lead us to what he wants. Then, he puts our hand on the item he wants us to get for him. That's just how he does it. You could do this by either just taking actual photos of the foods you want him to have a choice of, or there is software available on the Internet at www.autismcoach.com called "Picture This."

Someone mentioned an MFE -- Multifactored Evaluation. The school will do this because he's 2-1/2 and will be transitioning to a preschool-type program at age 3. Once they've done the MFE, they will meet with you to develop his IEP (Individualized Education Plan). IEP meetings are not a whole lot of fun, especially when they are going over testing results. They are comparing your child to a bunch of other kids his age, but possibly of different abilities. Don't take these too much to heart. Most standardized testing can't accurately measure the abilities of these children. If you can, have someone go with you to the meeting -- a friend, family member -- someone else even if your husband can go with you. That person could possibly take notes at the meeting. Sometimes, hearing some negative things about your child can cause you to shut down and not hear things that might be important later.

As for any other doctors, usually beginning with the pediatric neurologist or developmental pediatrician is enough to start with...the doctor can tell you if there are any other specialists you should see right away. Later on, you may decide yourself that there are other docs you think your son needs to see, like a child psychiatrist or a pediatric GI specialist, for instance. I'd take it one step at a time first.

Don't let the pressure of "am I doing enough?" drive you crazy. I think it's something we all think about on a continuous basis. You are doing the right thing by seeking help for him as soon as possible. Enough is a relative term. It's what you personally feel is enough, and what you personally can handle. If your son is diagnosed Autistic, please remember that is just one part of him. It doesn't have to define who he is. I don't feel I can be defined by just one word...I don't feel my sons can be either. For me, I feel God gave me my children for a reason. And He made them the way they are for a reason. I may not know what that is, but it will all unfold in it's own time. I think my biggest job is to help them find their place in this world -- Autistic or not.

I hope some of that helps.

Sincerely,

Suzanne Shaft

[Guest guest]

HI Eileen, I am very new to this group. But..I also live in Avon and I would

love to talk with you. My son is 3 years, 3 mos. old and we are almost certain

he is somewhere on " the spectrum " . I understand your frustration!!! It is taking

forever to get in to see the specialists. We did see a Dr.Wildman at the

Cleveland Clinic Center for Autism. I havent heard anything about him but he was

the first we were able to see so we are starting somewhere. We were told to see

a Jensen at the Clinic. But like you....months to wait to see her. And

we also know " early intervention is key " .

A little about my son...he does talk and uses requests ...even makes 5-6 work

sentences.At 2 1/2 he was not saying much though and has been going to ST. But

not much conversation, if any at all. Echolalia is common over here. I am not

sure at this point how to deal with it...although i have read it can be a good

sign. My son is very lovable, has some repetitive behaviors such as jumping and

humming. Mostly he plays along side other kids but does talk about others and

doesnt " sit in a corner all day long " .

Anyways... I could go on all day long. But...I think we should introduce

ourselves to each other. It would be nice to have someone so close in the area

to talk with or get together. Do you work outside the home? Would you like to

get together and meet sometime?

I recently bought both books by Maurice and they seem excellent so

far. I try to read as much as I can on a daily basis to educate myself since I

cant sit around waiting for these appts and waste quality time. Anyways..email

me and i could give you my home number if you would like.

---- Eileen Sullivan <esullivan.home@...> wrote:

> Hello everyone! My name is Eileen Sullivan and I am a mother of a 2 & 1/2

year old son named . We live in Avon, in Lorain County. My husband and I

have strong suspicions that is somewhere on the autism spectrum; we have

been referred by his pediatrician to see Dr. Max Wiznitzner but can't get an

appointment until September. I'm not sure what we should do in the meantime,

especially because, as I understand it from the few books on autism that I have

read, time is of the essence.

>

> I have a few questions. If anyone can share some insight, I'd be very

grateful.

>

> Our primary concern is that exhibits speech/language delay; he says

some words, mostly identifying objects, but doesn't communicate wants/needs.

The majority of his speech is characterized by echolalia. He repeats mostly

lines from books that I have read him and sometimes videos. (I thought I was

doing a good thing by reading to him all the time) I have signed him up for

speech therapy at the Cleveland Clinic in Westlake, but they are only able to

see him once a week. He will also participate in the Lorain County Help Me Grow

program, starting later this month, with going to a weekly play group and having

an EIS come to the house 2x/month.

>

> (1) How do I know if that is enough?

>

> (2) If he receives an autism diagnosis in September, who recommends

treatment and how do you go about putting it together? My understanding is that

it is up to us to put together the treatment. That seems crazy; do you diagnose

a person with cancer and then say, good luck and go find your own treatment?

>

> (3) Are there any training classes for parents on how to support the

principles of speech therapy specifically?

>

> (4) We've been trying to get to give more eye contact and point to

pictures of some foods he really likes in order to get him to better communicate

his wants. But as you can imagine he gets so frustrated and throws a tantrum.

I don't blame him b/c up until now I guess I just anticipated his need and gave

him milk and a snack when it was snack time without requiring him to speak. How

do you balance giving in versus trying to teach? Or are we going about this all

the wrong way?

>

> (5) Is there anyone else we should see besides the pediatric neurologist?

Rory McLean mentioned to me a " MFE. " Any advice?

>

> Thanks in advance.

>

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

In a message dated 7/10/2006 8:53:41 AM Eastern Standard Time, michellecahoon@... writes:

You should contact your county Help Me Grow to get started coordinating services.

But she said she was already doing that.

RoxannaThe only thing necessary for the triumph of evil is for good men to do nothing.Edmond Burke

[Guest guest]

Thank you for your advice. Cahoon <michellecahoon@...> wrote: Hello Eileen! You should contact your county Help Me Grow to get started coordinating services. If your child should qualify for early intervention MRDD would provide the early intervention. I have provided both the links for you for your county. Help Me Grow will also transition your child to preschool if qualified at age three. Help Me Grow does not need a diagnosis for early intervention the child from birth to three just has to have a one month delay in speech or other areas to qualify. They will do a developmental assessment at no charge to you to qualify your child. http://www.ohiohelpmegrow.org/professional/providers/LorainCounty.aspx http://www.loraincountymrdd.org/serv01.htm Cahoon AUTISM FACTS 1 IN EVERY 166 BIRTHS INCREASE - 11yrs in OHIO OVER 23,000% FASTEST GROWING DEVELOPMENTAL DISABILITY $90 BILLION ANNUAL COST

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Hi Eileen,

Here are some of my thoughts. The Maurice book suggested

by another member is very good; however, parts of it are very

technical and some parts of it dismiss biomedical treatments as an

option in treating autism. With that said, the programs set forth in

the book are invaluable.

There are some other books you may want to look at as well. These

are:

1. Right from the Start: Behavioral Intervention for Young Children

With Autism : A Guide for Parents and Professionals (Topics in

Autism) by L. , Jane, Ph.D. Gill-Weiss (this is a

parent-friendly, easy-to-read book -- there are many books in this

series).

2. Overcoming Autism: Finding the Answers, Strategies, and Hope That

Can Transform a by Lynn Kern Koegel, LaZebnik (offers

practical advice in working with children with autism).

3. Helping Children with Autism Learn: Treatment Approaches for

Parents and Professionals, by Bryna Siegel (although Ms. Siegel has

been criticized for not being a supporter of ABA, I thought this book

provided a lot of information on educating children with autism).

If you are looking for books to help you with programming, in

addition to the Maurice book, you can also look at the

following:

1. Teaching Language to Children with Autism or Other Developmental

Disabilities by Mark L. Sundberg and W. Partington (available

from http://www.behavioranalysts.com/).

2. A Work in Progress: Behavior Management Strategies & A Curriculum

for Intensive Behavioral Treatment of Autism by Ron Leaf,

McEachin, Jaisom D. Harsh.

3. Teaching Developmentally Disabled Children: The Me Book by O.

Ivar Lovaas.

4. Teaching Individuals With Developmental Delays: Basic

Intervention Techniques by O. Ivar Lovaas.

Some assessments that may be useful in designing programming for your

child are the Brigance or the ABLLS. When we first put our

children's programs togethers, I used the skills checklist from the

Maurice book and checked off whether the child (our son or daughter)

exhibited the skill or not. I started teaching with those skills

that he or she did not exhibit. After completing the curriculums in

both the Maurice nad Leaf books, we used both the Brigance and ABLLS

(ABLLS is available from www.behavioranalysts.com) to design

programming. We also use a book called Teach Me Language (this is

more for children 5 and older) for our son's programming.

There is a lot of information to absorb. Most of the books I

mentioned are available from the library.

By the way, the Autism Society of North Central Ohio is meeting

tomorrow (Tuesday) at 6:45 at the Avon Lake Public Library. If you

join their group, they have a lending library. I suspect that they

have many of these books in their library.

Thanks.

Debbie Z.

--- In , Eileen Sullivan <esullivan.home@...>

wrote:

>

> Hello everyone! My name is Eileen Sullivan and I am a mother of a

2 & 1/2 year old son named . We live in Avon, in Lorain County.

My husband and I have strong suspicions that is somewhere on the

autism spectrum; we have been referred by his pediatrician to see Dr.

Max Wiznitzner but can't get an appointment until September. I'm not

sure what we should do in the meantime, especially because, as I

understand it from the few books on autism that I have read, time is

of the essence.

>

> I have a few questions. If anyone can share some insight, I'd be

very grateful.

>

> Our primary concern is that exhibits speech/language delay;

he says some words, mostly identifying objects, but doesn't

communicate wants/needs. The majority of his speech is characterized

by echolalia. He repeats mostly lines from books that I have read

him and sometimes videos. (I thought I was doing a good thing by

reading to him all the time) I have signed him up for speech therapy

at the Cleveland Clinic in Westlake, but they are only able to see

him once a week. He will also participate in the Lorain County Help

Me Grow program, starting later this month, with going to a weekly

play group and having an EIS come to the house 2x/month.

>

> (1) How do I know if that is enough?

>

> (2) If he receives an autism diagnosis in September, who

recommends treatment and how do you go about putting it together? My

understanding is that it is up to us to put together the treatment.

That seems crazy; do you diagnose a person with cancer and then say,

good luck and go find your own treatment?

>

> (3) Are there any training classes for parents on how to support

the principles of speech therapy specifically?

>

> (4) We've been trying to get to give more eye contact and

point to pictures of some foods he really likes in order to get him

to better communicate his wants. But as you can imagine he gets so

frustrated and throws a tantrum. I don't blame him b/c up until now

I guess I just anticipated his need and gave him milk and a snack

when it was snack time without requiring him to speak. How do you

balance giving in versus trying to teach? Or are we going about this

all the wrong way?

>

> (5) Is there anyone else we should see besides the pediatric

neurologist? Rory McLean mentioned to me a " MFE. " Any advice?

>

> Thanks in advance.

>

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

[Guest guest]

Hello, Eileen! I'm glad you found this list. As you can tell, we

have a great group of parents here who already started on the

journey that you are now starting, and they are willing to share

where they have been, where they are now, and how they got there.

As way of introduction, My son is 7 years old and will be in a reg

ed 2nd grade classroom in the fall. He was diagnosed with autism at

age 3.

First let me say that I agree with the other listmates - reading to

your child is a wonderful thing. At the very least, it is a time

when the two of you can share a moment and enjoy each other's

company. I wouldn't be too concerned about the echolalia if I were

you, esp. if your son is using echolalia as a way to communicate. A

good SLP (speech language pathologist) would be able to give

suggestions on how to help your child progress, etc.

At the Milestones conference (an annual autism conference put on by

the Cleveland Clinic), I met Might from STEPS, which is in

Olmstead Falls. I don't know if Olmstead Falls is near Avon. Ms.

Might is a home AVB (applied verbal behavior) consultant and an SLP

(if I remember correctly). AVB is a type of ABA (applied behavior

analysis) that focuses on communication. I don't know Ms. Might

personally, but I do like the philosophy behind AVB. In case you

are interested, her phone # is 440-377-0029.

I sympathize with your frustration over the lack of standardized

care for individuals with autism. In so many arenas, I feel like I

am re-inventing the wheel. To not share what services are out there

with parents and/or to not discuss with parents what the scientific

literature has shown to be effective in treating autism is a breach

of the Hippocratic oath, IMHO. One reason why parents are left in

the dark, I think, is because effective intervention is intensive

and expensive. Many health insurance policies do not cover autism

treatment and it takes parents with patience and good lawyers to get

the schools to pay for it. I also believe that some physicians

don't agree with certain types of intervention (in spite of the

scientific research), or they let their egos get in the way, so they

are silent.

1.) Speech therapy once week and EI once a month is not enough. But

it would be a good idea to get suggestions for activities from the

SLP and then do them constantly at home. Research has shown that

the intervention should be 25-40 hours/week. Most of the research

has been specifically for ABA (applied behavior analysis). There

are many types of ABA: DTT (discrete trial training - Lovaas in the

1970s used this and some medical centers haven't progressed beyond

it), AVB, PBS (positive behavior support), PRT (pivotal response

training), NLP (natural language paradigm). But there also is

research, albeit in more modest quantities, showing the benefits of

Floortime, RDI (relationship development intervention), etc. The

key to effective intervention is intensity - 25-40 hours a week. My

suggestion would be to focus on an intervention that works on what

you think your child's deficits are. My son's is communication.

2.) If your son does receive a diagnosis of autism, you could ask

Dr. W. for his recommendations. I have never spoken with Dr. W, but

he does have a reputation. If I may suggest, contact Ms. Might and

see if you agree with her philosophy and services, and see if she

can start right away. That way you can get something started

immediately. Then you can compare what Dr. W suggests to what you

already have in place. {I'd be more than happy to let you know what

service providers I have used if you want to know and what I thought

of them, though I live in a different county than you. STEPS is the

only provider I know of on the west side.} Ultimately, it is the

parent who will organize the child's treatment. And honestly,

whether a child has autism or cancer, the parent is the one who

decides who treats their child and what treatments he/she receives

{provided health insurance pays for it or the parent can afford

it.) Gone are the days that the physician is " GOD " and patients

blindly obey them.

3.) I know of no classes that focus solely on the principles of

speech therapy. My husband and I audited a 2 semester university

level evening class that taught a transdisciplinary model. One of

the models was speech development. The class transformed our family

life. It was called The SUCCESS Approach, and was developed by

Lynnette Scotese-Wotjila of ITC and Dr. Audet of KSU. I would

recommend the 2 semester class in a heart beat, but last I heard,

Lynnette offered The SUCCESS Approach as a one day seminar. If you

want the basics of speech therapy, you might want to look at the

autism certificate classes at KSU. Maybe Dr. Audet would let you

audit a class.

4.) I wouldn't worry about eye contact. It would be better to give

your son a reason to look at you and want to be engaged with you

than to reward eye contact with a food item. For example, put a

surprise in a paperbag and shake the bag near your face. Curiosity

or anticipation will get him to look at you, and once he does, you

can let him open the bag and see what is inside. I like suggestions

www.rdiconnect.com gives. Here's one thread on eye contact:

http://www.rdiconnect.com/forums/displayThreads.asp?

FID=2 & TOID=544 & THID= & PP=32

I would recommend requiring your son to speak to receive food (or to

use a picture exchange system if a child can't speak). For example,

if your son usually leads you to the kitchen and puts your hand on

the cook jar when he wants a cookie, you may have to accept " kah "

before you give him a cookie. Then when he is consistently

saying " kah, " up the ante and make him say, " cookie. " Don't give

in, or else he will learn if he tantrums, he gets a cookie. And he

won't die if he doesn't get a cookie.

I wish you and your family the best.

Chris

P.S. Do you think your son can read? Is he interested/obsessed

with letters?

P.P.S. A group of us are meeting at a church on the west side of

Cleveland on July 15th to discuss biomedical interventions. You are

more than welcome to come to that and meet some of us in person.

>

> Hello everyone! My name is Eileen Sullivan and I am a mother of a

2 & 1/2 year old son named . We live in Avon, in Lorain

County. My husband and I have strong suspicions that is

somewhere on the autism spectrum; we have been referred by his

pediatrician to see Dr. Max Wiznitzner but can't get an appointment

until September. I'm not sure what we should do in the meantime,

especially because, as I understand it from the few books on autism

that I have read, time is of the essence.

>

> I have a few questions. If anyone can share some insight, I'd

be very grateful.

>

> Our primary concern is that exhibits speech/language delay;

he says some words, mostly identifying objects, but doesn't

communicate wants/needs. The majority of his speech is

characterized by echolalia. He repeats mostly lines from books that

I have read him and sometimes videos. (I thought I was doing a good

thing by reading to him all the time) I have signed him up for

speech therapy at the Cleveland Clinic in Westlake, but they are

only able to see him once a week. He will also participate in the

Lorain County Help Me Grow program, starting later this month, with

going to a weekly play group and having an EIS come to the house

2x/month.

>

> (1) How do I know if that is enough?

>

> (2) If he receives an autism diagnosis in September, who

recommends treatment and how do you go about putting it together?

My understanding is that it is up to us to put together the

treatment. That seems crazy; do you diagnose a person with cancer

and then say, good luck and go find your own treatment?

>

> (3) Are there any training classes for parents on how to support

the principles of speech therapy specifically?

>

> (4) We've been trying to get to give more eye contact and

point to pictures of some foods he really likes in order to get him

to better communicate his wants. But as you can imagine he gets so

frustrated and throws a tantrum. I don't blame him b/c up until now

I guess I just anticipated his need and gave him milk and a snack

when it was snack time without requiring him to speak. How do you

balance giving in versus trying to teach? Or are we going about

this all the wrong way?

>

> (5) Is there anyone else we should see besides the pediatric

neurologist? Rory McLean mentioned to me a " MFE. " Any advice?

>

> Thanks in advance.