| T.R | Title | User | Personal
Name | Date | Lines |
|---|
| 66.1 | | RDVAX::COLLIER | Bruce Collier | Mon Jun 25 1990 15:29 | 34 |
| Bonnie -
That's a tough situation, one unlikely to be solved quickly, or
diagnosed at a distance.
It seems to me that one thing is clear - the mom is having a hard time
herself, and it will affect the other two kids as well. The needs
those three have are no less important than Danny's. Where is the dad
in all this? It sounds as if the mother could use some short term
counseling to get a little more perspective on the problem. When I say
"could use" I really mean "clearly needs."
As to Danny's problem, it certainly sounds real. Unfortunatly,
learning disorders aren't very well understaood; indeed normal
cognative development isn't very well understood. And more of medicine
than we like to remember is less like science than like art or black
magic. But that doesn't make it any less painful when experts disagree
about a problem that affects _you_.
If they lived in Massachusetts, the local school system would have to
provide an evaluation by a team of experts, and fund a course of
treatment they would try to agree upon with the parents. It doesn't
matter if the child isn't school age yet. I would suppose that the New
York laws may be similar, so this might be explored. Even if the
diagnosis is in contention, treatment might still be effective. And
just having the child spend time with teachers specializing in learning
disabilities might well lead to a better understanding of the problem,
even if they then recommend a different form of treatment.
At minimum, I have known the town-provided counselors to have helped
the parents calm down, and more effectively sort through the
conflicting advise of other experts.
- Bruce
|
| 66.2 | Early Intervention Programs are Great | NEURON::REEVES | | Mon Jun 25 1990 15:55 | 32 |
| Bonnie,
I know how frustrating it can be when doctors can't agree on
a diagnosis/treatment. I do not have experience in dealing with this
specific problem, but my son is a special needs child and I do have
experience in Early Intervention Programs.
My best advice would be to have your cousin get in contact with
a group who specifically deals with Early Intervention Programs, either
through the telephone book or contact a support group who can give her
names, (ie, Easter Seals, Down Syndrome Association or any learning
disability group). The people who work in the Programs are (or should
be) trained professionals who can give several types of tests that can
help determine the areas which need work on. Who knows, maybe they can
make a proper diagnosis. I would get into some sort of Early
Intervention Program as soon as possible.
In the few short months that I have been dealing with these
folks, they gave preliminary evaluations, then after going over test
results, etc. we would meet with them and discuss their recommendations
for therapy (speech,physical and occupational). We then met with the
therapists who would be administering the therapy and determine if they
were suitable to our wants/needs. It is very important that you find
someone with who you and your child has a good rapport. If you are not
completely comfortable with a therapist, interview more, and remember
you are not obligated to any one program. The biggest mistake we made
was believing we had to settle for what was offered. We've learned,
and now we have a wonderful program for our son.
Also, make sure the insurance company is contacted and find out
just what they cover, as therapy can be very expensive and sometimes,
the insurance company only covers certain types of therapy and some put
restrictions on amount.
If you need any specific information, please let me know.
Malinda
|
| 66.3 | Thanks Bruce | CURIE::POLAKOFF | | Mon Jun 25 1990 15:59 | 13 |
|
Bruce,
Thanks for the input. As for your question, "where is the dad in all
of this?...." Dad just started his own business LAST MONTH and is
spending all his time in the office--making enough money to pay the
mortgage, etc. It's not a good situation.
Thanks again,
Bonnie
|
| 66.4 | might be a normal abnormal reaction? | TLE::RANDALL | living on another planet | Mon Jun 25 1990 16:21 | 35 |
| Bonnie --
My first reaction is that maybe a little less rather than a little
more intervention might be in order here! It wouldn't surprise me
that a normal 2-year-old who had been dragged from specialist to
specialist while his father has just disappeared and his mother is
pregnant might withdraw and be unwilling to interact. If he's got
a developmental problem of some kind on top of it, the situation
is going to really exaggerate the problem.
The first question that came to my mind is whether this is new
behavior, or if he has always interacted in this way. It sounds
like it's recent, which causes me to suspect he might be, um,
exaggerating in order to get mommy's attention away from the baby
and/or reacting to Daddy's absence. (Sounds like it's working
beautifully!)
I'm also a bit suspicious of that hearing test. What kind of test
and who gave it? The standard test that measures how faint a
sound you can hear doesn't cover all the hearing skills you need
in order to understand and imitate speech. Did they check that he
can distinguish among sounds in the range of normal speech? You
say he doesn't answer to his own name -- but has anyone tried
watching him when he's playing alone? Does he respond to other
sounds then?
Has his VISION been checked? He might be assembling the trucks by
touch, but unable to classify them because he can't make out their
full outline. And a child that age wouldn't be able to tell that
he isn't seeing the same thing everybody else does.
These are just some random thoughts -- I hope you find some of
them useful. I feel for you in this trying time.
--bonnie
|
| 66.5 | Thanks Bonnie | CURIE::POLAKOFF | | Mon Jun 25 1990 16:55 | 50 |
|
Bonnie,
Thanks for the response.
I agree with you--that all this intervention may not be a good thing at
this point--but I'm not the one deciding. Frankly, I understand where
his parents are coming from--because if he were my kid, I might be
rather frantic at this point too. The child is not communicating
verbally AT ALL--nor is he showing that he understands commands AT ALL.
He does not establish eye contact--despite the best of efforts to
establish eye contact with him.
If you say, "Danny, go get your shoes...," you might as well be saying
"Danny, go fly to the moon." There doesn't appear to be a clue that he
understands even the simplest of commands.
Bonnie--I'd like to believe he's upset at all that's going on at home
(Mom pregnant, Dad working all the time), but I don't think that's it.
Nina has been saying there's something wrong for awhile, but we all
poo-poo'd her. Sounds like Nina's natural instincts were right all
along. Getting back to Danny's home being a hotbed of change--that's
true in one sense, but not true in another. He has a stable, loving
Nanny (who has been with the family since before he was born)--and a
Grandmother and Grandfather who spend a lot of time with him as well.
He is not lacking for attention. His mother only works 10 hours a week
and when she's home--she's spending time with the kids. Danny has many
advantages that most kids don't have--my take is that he's not acting
out. My take is that there is a problem. Thing is, no one can agree
as to what the problem is. And his mother is hysterical (being 10 mos.
pregnant doesn't help). So....
My take is that he is too young to begin this kind of relentless
testing--but then again, ALL the experts agree on one thing--early
intervention is the best medicine. And Nina NEEDS TO KNOW what 's
going on--she is driving herself crazy with worry. And this is not a
person who normally worries--she's normally quite easy-going and
relaxed. That's why I'm worried.
Anyway Bonnie--thanks for your input. I questioned the hearing test
too--but apparently, it was a test specifically designed for
"non-verbal toddlers." So...your guess is as good as mine. As far as
the vision thing goes--that's a possibility, but would vision effect
language and cognition?
Regards,
Bonnie
|
| 66.6 | clarification | TLE::RANDALL | living on another planet | Mon Jun 25 1990 17:13 | 39 |
| Bonnie --
Yes, if his mother has been worried about this for a time, then
it's much less likely to be the changes in his life, though I'm
sure that hasn't helped any. I didn't mean to imply that the
turmoil was the only problem, only that it was probably
aggravating whatever the underlying problem was. And I didn't
mean to imply you could do anything about it, either -- sorry if I
made it sound like your problem.
I was trying to say that the boy's normal emotional reactions to a
new sibling and a change in the family situation might be creating
"static" that's interfering with the specialists' getting a clear
reading on the real problem -- sort of like trying to find out
what's on the bottom of a pond when the mud's all churned up from
a horse walking through it. And that if they could manage to let
it go for a few weeks to give things a chance to settle down, it
might help -- I know that must be almost impossible.
Yes, I'd be frantic too. That's when one needs a caring person
outside to try to see things more clearly -- she's lucky she's got
you.
With the vision -- I don't know if it could cause language
problems or not. I've read that poor vision or other eye problems
can show up in really strange ways in young children. It was kind
of a stab in the dark based on a schoolmate's child who was born
with cataracts and they didn't realize it until she was about 19
months old, when the mother noticed she was doing very complex
things with her hands and yet not able to recognize her own
grandmother, who she talked to on the phone regularly. Her voice
was different in person, and since the girl recognized people by
voice and smell, this woman who was trying to pick her up couldn't
possibly be Grandma.
It's a difficult situation. I feel bad for the parents, and for
the brother who's getting overlooked in all this too.
--bonnie
|
| 66.7 | Anyone Out There Have A Similiar Situation? | CURIE::POLAKOFF | | Mon Jun 25 1990 17:32 | 12 |
|
Bonnie,
Thanks for your support. I guess I'm wondering if there are any other
folks out there who have had a child who has exhibited these symptoms?
It's just so hard in a child so young. I only hope that whatever it
is, early intervention and diagnosis (if they can agree to agree!) will
help Danny to be the best he can be.
Bonnie
|
| 66.8 | Needs Team Approach | MPO::GILBERT | Too much month at the end of the money | Mon Jun 25 1990 18:34 | 16 |
|
It appears that all of the doctors have agreed that something is
wrong. They just haven't figured out what. It also appears from
your note that these specialists are talking to the mother but not
to each other. I would suggest a full evaluation at a facility similar
to Children's Hospital in Boston where you can sit down with a team
of doctors and get your questions answered all at once.
Medicine is an inexact science. Most of the time we, as human beings,
exhibit clear symptoms that allow educated professionals to read
a diagnosis from a book. It appears that yours is one of those cases
that they earn their money (and reputation) on. I would consult
the best of the best in this case. That's alot easier to say when
you know that most of the best pediatric experts in the world are
in your own backyard. I wish you all the best of luck.
|
| 66.9 | Some words of encouragement | CHEFS::MANDALINCIA | | Tue Jun 26 1990 05:48 | 32 |
| Bonnie,
I can really feel for what your sister's family is going through
(including you). It must be very hard.
The first thing I thought of in reading your base note was - get
the docotrs to all sit down together!!! As .8 said try a place like
Children's Hospital where you get a team of doctors or some state
program where you will get coordination between the doctors. A
recommendation to see another doctor is often an excuse because
they aren't really sure and hope another doctor can make the final
diagnosis.
What I would suggest in the short-term, let it all settle down for
the next 3 weeks. Your sister doesn't need the extra stress during
the last 3 weeks. Danny doesn't need the stress of being at a million
different doctors and suddenly have a new sibling appear. The older
brother could probably use some consistency in home life as well.
Suggest their father make an extra special effort to spend time
at home (maybe come home for dinner and putting the kids to bed
and then go back to the office, or comes home mid-afternoon to spend
some time). I think they all need a reset button pushed for now
and should just wait until the baby comes, your sister recovers
and then they can start the pursuit again to finding the solution
to Danny's situation.
I wish we had a miracle answer for Danny but I can only offer support
for what you are all going through. I know how extremely frustrating
it is when you feel like there are no solid answers - especially
from the supposed professionals.
Andrea
|
| 66.10 | My cousin is autistic | CLOSET::RAGMOP::LOWELL | Grim Grinning Ghosts... | Tue Jun 26 1990 14:26 | 36 |
| Bonnie,
I don't have a child in this situation but my aunt does. I don't
feel comfortable giving too many details in here since he's not
my son and there may be some pending litigation concerning him.
Please feel free to call me at DTN 381-1178 and I'll tell you
what I can.
Basically, Josiah is the youngest of 6 children. At some point
my aunt noticed something was different about him and mentioned
it to his doctor. The doctor shrugged it off and acted like she
didn't know what she was talking about. She ended up going from
doctor to doctor without getting the answers she needed. I believe
he was eventually diagnosed as being autistic by a doctor in
Exeter, NH (she's from Maine).
Josiah showed bahavior similar to Danny's. They taught him his
name by turning a flashlight on in his face while pronouncing
each syllable (he liked lights). At some point he learned to say
his name. Some time later he realized that it referred to him -
the milestone occurred when he came up to my aunt and said, "Me,
Josiah." They taught him to "pay attention" by saying, "Josiah,
look at me" and forcing him to look by moving his head. Note,
this sounds harsh but it does work.
The therapy seemed to help him a lot although any sort of change
in his life would cause him to regress. Last I knew, he was put
in a special first grade class. I'm not sure what he's up to
now. My husband met him for the first time around mother's day
and said he seemed normal (nothing like what I had described).
One negative thing, the fact that my aunt took him from doctor
to doctor "in order to get a label pinned on him" has been used
against her in court. I won't state the circumstances here.
Ruth
|
| 66.11 | Autism? | CSC32::DUBOIS | The early bird gets worms | Tue Jun 26 1990 18:34 | 15 |
| Bonnie, I was hoping someone else would respond with personal experience,
so didn't want to write with what *little* I know of this.
The only thing I can tell you is that I was watching a show several years
ago on TV (probably PBS) that was on autism. The child they showed acted
just as you describe. He wouldn't acknowledge anyone or any words spoken
to him. I remember him just sitting outside, and he either wasn't doing
anything or he was doing one thing over and over. I think I remember
from my Psych classes that sometimes autistic children can be self destructive
with head banging and the like, but it doesn't sound like that is a problem
for your nephew. I wish you and your family luck. Whether your nephew is
autistic or not, he does need help, and I agree with Jeff: he needs to get to
the best of the best doctors as soon as possible.
Carol
|
| 66.12 | don't let it take the whole family down | TLE::RANDALL | living on another planet | Tue Jun 26 1990 19:13 | 55 |
| About autism generally:
My counsellor from last year waxed indignant for a while about all
the damage that some movie with an autistic grownup in it caused,
because she was seeing a whole flock of parents who had suddenly
decided their variously handicapped, learning disabled, or
normally developing children were autistic.
There are many conditions, both physical and emotional, that can
cause symptoms similar to autism. Autism gets a lot of press
because it's dramatic and difficult to treat, but most doctors are
reluctant to pass a label of autism in the absence of a specific
set of symptoms. I don't know exactly what those symptoms are; my
understanding from what this counsellor said was that true autism
isn't generally all that hard to diagnose.
Unresponsiveness to one's name is typical of autism, but it's far
from the only condition that will cause that behavior. A name is
a complex symbol; the child in the base note displays other
problems with complex symbols; perhaps -- and this is an example
of what can happen, not an attempt at explanation or diagnosis --
he has a learning disability manipulating abstractions. I forget
its name; a cousin of mine has it. She never did learn how to
read or tell time because she can't form an abstract image in her
mind.
All I'm saying here is that any kind of learning problem in a
small child can be very difficult to diagnose, and many different
problems can result in similar behavior. Expert doctors may fail
to agree for valid reasons, and it may take a long time. They
can't always agree on a diagnosis of something as simple as
dyslexia. Something complicated can be pushing the edge of their
knowledge as well as their experience.
The answer may be as simple as stumbling on a doctor who happens
to have dealt with this particular problem before. The chances of
finding such a doctor might be greatly increased in a medical
center, as has been previously suggested.
If the child's regular pediatrician hasn't consulted with the
specialists, perhaps s/he could provide a different perspective
that will help with the pieces of the puzzle.
But whatever happens, the parents need to remember that the other
children, and they themselves, have legitimate emotional needs,
and no matter how deep their terror for the troubled son, they
can't let it become the total business of the family.
If it hasn't been suggested yet, some family counselling might be
in order here. A large teaching hospital should have a support
group for parents going through this kind of thing, or they might
be able to find a local group of parents of learning-disabled or
emotionally troubled children.
--bonnie
|
| 66.13 | See Learning Disabilities Conference | SHARE::SATOW | | Wed Jun 27 1990 12:45 | 7 |
| Bonnie,
You might also try browsing through the learning disabilities conference.
See note 7.6
Clay
|
| 66.14 | More information | CLOSET::VAXUUM::LOWELL | Grim Grinning Ghosts... | Wed Jun 27 1990 12:55 | 81 |
| Bonnie,
I called my aunt last night, described Danny's situation as best
as I could and asked for her opinion/advice.
When she took Josiah to be diagnosed, he was not talking at all
and made no effort to communicate with others - he did not try
to play with his siblings. She says some doctors did agree that
something was wrong but didn't know what to do. He was finally
diagnosed by Dr. Storm in Exeter, NH and was placed in a program
of intensive language and play therapy with home carry over at
age 3 1/2. She described the therapy as being something that
had to be done EVERY day (I'm not sure if he had to go to the
doctor's office every day).
According to her, it is quite common to get mixed diagnoses as
it is difficult to determine the problem until the child learns
that language exists. From my limited description of Danny, she
strongly suggested looking into one of these intensive therapy
programs. She also went as far as saying that he doesn't sound
like he's autistic since he does reach out. She bets his CAT
scan and MRI will be normal.
She did ask a couple of questions. Has Danny been tested for ADD?
Does Danny pick up any cues from his environment i.e. If Nina brings
out a towel does he know it's bath time?
Her main message is that there is a lot of hope for these children.
A lot of research is being done in this area so there are many
options to try but it requires a lot of hard work. She described
what the therapy was like - for more than a month all she was supposed
to say to Josiah was, "Do you want apple juice?" or "Do you want more
apple juice?" and then follow through by giving him a glass of apple
juice. Finally, he looked at her and said, "I want apple juice" to
which her immediate response was to give him some apple juice. He
then knew how to express his need for apple juice. (I imagine she
was able to say other things to him but they had to focus on wanting
apple juice.)
Josiah is now 9. Recently his teachers insisted he was reading but
my aunt knew he wasn't. They headed off in search of a specialist
who would know what teaching methods to use to teach Josiah how to
read. They found a specialist to teach Josiah's teachers how to
teach him. The teachers were reluctant but once they used those methods
he learned his alphabet and is learning to read. These are the kinds
of battles my aunt has to fight.
My aunt puts a lot of effort into making sure Josiah gets what he
needs. She seems to keep up to date with research work being done.
She and her husband attend any seminars on autism and language
disorders that they can. She tries to talk to the speakers and also
writes/calls them for information.
She recommends calling Dr. Storm to get some recommendations of
people in her area. She says he is known and respected nationally
and has many contacts. If he has any questions about a case he does
not hesitate to call other people for information. (My aunt said
Josiah has been his most complicated case to date and he had to go
through a lot of training to treat him correctly.)
She says Leonard Rappaport at Boston Children's Hospital is also a
good contact.
She highly recommends calling or writing to:
Dr. Barry Pricant
Director of Communication Disorders
Bradley Hospital
East Providence, RI 02195
Barry has written books about communication disorders and is pioneering
the research on infant communication through cries, etc.. Through his
work they are able to detect language problems at very early ages (my
aunt gave me an example involving a 9 month old).
She said to tell Nina to contact the language section of the state's
mental health department. They should be able to get information to
her. My aunt was able to get names of contacts and had her name put
on mailing lists for seminars, etc..
Hope this helps,
Ruth
|
| 66.15 | Autism Information Resource | ECHOES::HOLLOCHER | | Fri Jun 29 1990 16:28 | 23 |
| Hi Bonnie,
My son is six years old. He was diagnosed with autism at the age of 3.
We went through the whole doctor/diagnosis routine. I am not a doctor or
a specialist in this area, but the symptoms sound very familiar.
The diagnosis of autism is a very difficult one to confirm, and diagnosis
of this type of behavior have many titles depending on what "specialist" you
ask.
My wife works for the National Autism Society. If you have any questions, need
information, referals to specialists or if you are a parent with a child with
"autistic behaviors" and you need someone to talk to please don't hesitate to
contact us. Our personal experience and our access to information may be of
help.
If you don't quite know what to ask, contact us anyway. We won't wrap you in
any red tape. We just want to help.
Vax Mail ECHOES::HOLLOCHER
DTN 225-5648
Home : 508-829-5870
|
| 66.16 | | NOTIME::SACKS | Gerald Sacks ZKO2-3/N30 DTN:381-2085 | Thu Jul 05 1990 11:50 | 9 |
| re .12:
> Expert doctors may fail
> to agree for valid reasons, and it may take a long time. They
> can't always agree on a diagnosis of something as simple as
> dyslexia.
They don't agree on a *definition*, never mind a diagnosis, and it's
not a "simple" condition.
|
| 66.17 | An Update | CURIE::POLAKOFF | | Wed Sep 19 1990 14:33 | 59 |
|
Just to update everyone on the situation--I spoke to my cousin Nina
last night and got the latest biz on Danny.
He has been accepted to and is attending a special pre-school at Albert
Einstein Medical Center in the Bronx, NY. They concur with the
preliminary diagnosis of mild autisim.
However, autism is a very broad term and does not necessarily mean what
we have been taught it to mean. Danny's autism is considered a
"communications disorder," and he is otherwise very bright and very
alert.
Already, Nina sees improvement in him--he is starting to babble and
starting to form words--even though he is not yet applying those words
to objects or meanings. To refresh most of your memories, he is only
2.
They feel certain that by 2nd grade, Danny will be able to be
mainstreamed into his regular school. I don't know if that means into
a special class there, or if that means into a regular class...time
will tell.
For all the early intervention and for all Danny's progress, this has
been EXTREMELY hard on the family--especially on Nina.
Because they live in upper Westchester County (ie: near the Putman
County line), Albert Einstein does not provide transportation. If they
lived in one of the 5 New York Boroughs, transportation would be
provided. As it stands now, Nina has to drive almost 90 minutes each
way to get Danny to class. Class lasts 2 hours a day and is in session
5 days a week, year round.
In addition, parents are required to help out in class 3 out of the 5
days a week. There is additional "homework" at home as well.
Danny's older brother Mathew just started kindergarten. He goes to a
neighbor's house before the bus comes and the neighbor gets him on the
school bus for Nina. He gets dropped off at the neighbor's house as
well after school--until Nina gets there to pick him up.
Nina also has a 6-week old baby. She takes both the baby and their
nanny to Danny's class and the nanny takes care of the baby--except
when Nina nurses.
Nina had to quit her job--she had a job working 2 days a week as an
adoption attorney--which she absolutely loved.
The family will probably be fine in the long run--but right now, in the
short run, things are hectic, frenetic, and crazy.
Nina feels she actually is lucky. There are kids in Danny's class who
are in single-parent homes. Those parents have it real hard--they need
to fit full-time work schedules around the Albert Einstein pre-school
schedule.
Bonnie
|
| 66.18 | Keep On Truckin' !!!!!! | NEURON::REEVES | | Wed Sep 19 1990 15:48 | 13 |
| Bonnie,
I'm glad to hear that things are starting to work out for Nina and
family. I can relate to her situation, our son requires therapy and I
have been blessed with a wonderful team to work with, they have been
very supportive when I have to leave to take Shayne to therapy and all
the other numerous doctor's appointments and even our many stays in the
hospital. It sometimes seems that all your energy is drained and you
just won't be able to take another day, then your child does something
for the first time that you have been working for weeks on and suddenly
you get back that energy. It's a long hard road, but it's worth every
second.
Good luck and God bless,
Malinda
|