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Dr.
Robert Naseef
"TITLE:
"Special Children, Challenged Parents".
Thursday,
April 10th at 9 p.m. (Eastern), Note portions of
the text have been edited for spelling and grammatical errors, while other
text with errors was left in tact in the context of the chat.
Rebecca {public msg} Hello and Welcome to our talkAutism
Specialty Chat. If you have a question for our Host Speaker, "author Dr.
Robert Naseef - 'Special Children, Challenged Parents", Just type a “?” in
the room. The names will be taken in order received. Hold your questions
until you are cued by the Moderator. Also, Please keep chit chat down to a
minimal, unless ok'd by the Host. Thank You and enjoy your stay!
Moderator {public msg} DR. Bob would you like to start by giving a
brief bio about yourself.
DR.Bob {public msg} Sure. I am a psychologist who happens to be the
father of an adult child with autism. Tariq is now 23 years old. My book
is about the emotional landscape for families who have a child with
special needs.
DR.Bob {public msg} Tonight I am open to whatever questions people
have. I also have a web site, www.specialfamilies.com, which has many
articles and a photo essay of my life with my son.
Moderator {public msg} DR. Bob, MommyO has a question for you.
MommyO {public msg} In your video clip you mentioned how
your son has helped you to become a better person. What would you say to
the parents that feel that they have been cursed by autism?
MommyO {public msg} I have allot of friends who feel very down and
that autism makes life miserable.
DR.Bob {public msg} It can certainly be a hard life. At times I
felt cursed as well especially in the beginning. Few people would choose
to have a child with autism. Nonetheless, our children with this condition
are extremely loveable. I think it helps to hold onto those precious
moments we all have amidst our struggles. Whenever our child makes even a
tiny bit of progress there is cause for celebration. We learn everyday
what is truly important in life.
DR.Bob {public msg} Of course there is misery. It is the grief for
the life we wished we had and the family and the child we wished and
dreamed for.
MommyO {public msg} How can you help those parents who just don't
see the good in their child?
DR.Bob {public msg} I ask them to tell me about the moments that
feel good even if they are few and far between. I ask them what hurts and
I tell them that it is okay to hurt. It's pop psychology but there is a
lot of truth in the saying that you can't heal what you can't feel. And
indeed it takes times to heal a broken heart.
DR.Bob {public msg} Maybe some people here tonight would like to
share some of the redeeming moments that they have.
MommyO {public msg} For myself I try to sound positive and happy
for my friend’s children.
MommyO {public msg} But they don't seem to enjoy my positive
comments.
MommyO {public msg} Is there a better way for me to try to help.
Moderator {public msg} Lead them by example.
MommyO {public msg} You are very right, Moderator!
MommyO {public msg} I do feel very blessed with all my children.
DR.Bob {public msg} I used to feel the same way when people noticed
the little steps my son made. I was angry and hurt that he couldn't just
be normal.. But eventually those people who noticed--mostly his
therapists-helped me to notice and accept my son as he was. Once I could
accept in the sense of be at peace with him in the moment, then their
comments felt good and warm and healing. So I think you are doing the only
thing that makes sense. It takes time and it hurts more than we want to
admit to ourselves.
MommyO {public msg} Thanks DR. Bob.
Moderator {public msg} Dr Bob in writing the book, did you find any
misconceptions about what other people thought Autism was to start with?
DR.Bob {public msg} Sure. People have a stereotype of a child who
doesn't relate at all. Nothing could be further from the truth. Each is
different and for sure children with autism don't relate in "typical
ways".
Moderator {public msg} SideNancy has a question.
SideNancy {public msg} My son was diagnosed as educationally
autistic but I had him tested at age 5 by the u of Kansas Autism Center
and he was normal.
SideNancy {public msg} Is it common for all states to have a
separate definition for autism for education?
DR.Bob {public msg} Children change. There are some cases where
children no longer meet the criteria for the diagnosis of autism. If the
new diagnosis is accurate you are indeed blessed.
SideNancy {public msg} He is 11 years old now...a twin born at 28
weeks.
SideNancy {public msg} I just got the label removed from the IEP.
MommyO {public msg} Is his brother typically developed?
SideNancy {public msg} his twin is a sister...and she had
significant speech delays as well but she was never labeled only had
speech therapy.
SideNancy {public msg} Speech was the only indicator.
DR.Bob {public msg} Sometimes children have traits that are part of
the diagnosis but not the full syndrome. These traits still need to be
treated appropriately. I think we are seeing that children with more mild
traits are often being ignored in many school systems or not receiving all
the help they and their families need.
Rebecca {public msg} ?
DR.Bob {public msg} Some people think that autism is being over
diagnosed. I don't think so.
SideNancy {public msg} I wondered if a lot more of the autisms
diagnosis is due to more extremely premature infants now coming through
the system.
DR.Bob {public msg} But there is mistakes.
MommyO {public msg} Do you feel that the autism today is different
than the autism 20 years ago.
DR.Bob {public msg} Premature babies are at risk for developmental
delays of all sorts as well as learning disabilities which won't be
apparent until later.
SideNancy {public msg} Thank you Dr Bob.
DR.Bob {public msg} Autism today is more broadly defined than when
my son was diagnosed.
Moderator {public msg} Rebecca you have a question.
Rebecca {public msg} Do you know any averages of children that are
miss-diagnosed, there are so many labels these days. What types of DRs do
you recommend for confirmation. Due to many APD and Autistic children
having so many similarities.
Rebecca {public msg} or Specialists?
DR.Bob {public msg} I recommend that people who are concerned about
their child's developmental seek an evaluation by a developmental
pediatrician or a psychologist or a child psychiatrist who is experienced
and qualified in this area.
Rebecca {public msg} As in, did you agree when your very own child
was diagnosed?
Rebecca {public msg} Or did you, yourself seek more confirmation.
DR.Bob {public msg} I was horrified. I thought my head was going to
explode. It was the darkest day of my life. Almost 20 years later, when I
recall that day, I shudder inside.
DR.Bob {public msg} Of course, I hoped it wasn't true and I sought
other opinions. I was very angry at the doctors, at my fate, at the
prognosis, etc.
MommyO {public msg} I was in denial, and fought everyone who said
my son had autism.
Rebecca {public msg} One more question, did you consider an
Audiologist to test for APD instead of the Autism? What convinced you the
diagnoses was secure and 100 percent..
DR.Bob {public msg} It's a normal response, Sharon, to horrible
news.
Moderator {action} . o O ( I spent a year in denial when my son was
diagnosed with a terminal illness )
MommyO {public msg} Until I took the CARS test myself and realized
"MY SON WAS AUTISTIC".
DR.Bob {public msg} It takes time and getting tests of various
sorts is part of getting the right help and accepting the unacceptable.
Rebecca {public msg} did you take him to an Audiologist to rule out
APD though? What convinced you?
DR.Bob {public msg} If one of my children was diagnosed as our
Moderators, I think I would deny it as long as I could until I could find
the strength to accept it.
MommyO {public msg} What is APD?
Rebecca {public msg} Im only asking because i know someone going
through all the testing now.
Rebecca {public msg} Auditory processing disorder.
Rebecca {public msg} It runs very close lines with the diagnosis of
Autism.
DR.Bob {public msg} Many children with autism do have APD- auditory
processing disorder- as one of their symptoms.
Rebecca {public msg} Ahhhh ok, i see.
MommyO {public msg} Don't most autistic kids have that?
DR.Bob {public msg} A complete thorough work up of all issues is
vital.
Rebecca {public msg} Some treat the APD and the Autism correct?
DR.Bob {public msg} Bless them!
Rebecca {public msg} I’m not sure how it all works out.
Rebecca {public msg} You might read Karen Foli's book on APD, very
impressive. Like Sound Through Water, A Mother's Journey Through Auditory
Processing Disorder.
MommyO {public msg} We just finished AIT, and our in the process of
Tomatis.
DR.Bob {public msg} We can only hope and pray. No one knows the
answer and we may never. Sometimes we can only talk to God or our higher
power.
MommyO {public msg} I see encouraging signs.
Rebecca {public msg} Sorry, one more ? :) Can I ask what the CARS
test is?
Rebecca {public msg} MommyO that’s great!
DR.Bob {public msg} It's a screening instrument to make the
diagnosis of autism. It rates the severity of autism as well.
Rebecca {public msg} ok, thanks!
MommyO {public msg} Our school psychologist gave us a test called
CARS that had questions to evaluate if your child had autism.
Moderator {action} . o O ( If anyone else has any questions they
would like to ask, please just type a ? in the chat screen and I will be
happy to add you to the list. )
Rebecca {public msg} DR. Bob i agree there 100%
MommyO {public msg} ?
Rebecca :Applauds DR. Bob fervently.
Moderator {public msg} MommyO, you have a question.
MommyO {public msg} Do you have any suggestion on keeping a happy
marriage and family.
Moderator {action} . o O ( Talk talk and then try talking again )
MommyO {public msg} lol
MommyO {public msg} It takes me a while.
DR.Bob {public msg} One simple suggestion is to express your
gratitude for whatever good things your spouse has done lately. Ditto for
your other children. Gratitude for what we do have is often the best
medicine to sooth the pain and relieve the stress of everyday life. There
are a few articles on my web page that address this issue as well. I would
also like to ask people here what works positively for them.
Moderator {public msg} For us it was realizing that it was not just
happening to me, it was happening to all of us.
DR.Bob {public msg} Wow! That’s really important. Sometimes we just
get lost in our own heads.
Rebecca {public msg} Very good Mod!
Moderator {action} . o O ( Thank you...it took us a while but we
realized it one night )
Rebecca {public msg} Anyone else?
DR.Bob {public msg} Sometimes those really dark moments open
through to peace.
Moderator {public msg} Yes Dr it sure did.
Rebecca {action} Was told, always include the siblings in
everything and try to make quality time for them as well.
DR.Bob {public msg} It's the idea that everyone is special and
everyone has needs.
MommyO {public msg} Thanks DR. Bob, Nice talking with all of you.
(Sharon)
Moderator {public msg} Rebecca I think we did just the opposite, my
kids all knew that I would give to them what ever time, energy they needed
when they needed it, and it was just that their brother needed it more.
Rebecca {public msg} very well said DR. Bob.
DR.Bob {public msg} Good point Moderator. The children can and do
figure that out as long as we remain aware and available to them.
Rebecca {public msg} Do the siblings ever regret the Autism or the
sibling with Autism? And, DR Bob, do you have other children?
Ron {public msg} ?
DR.Bob {public msg} Sure they do. Sometimes it is scary to ask them
and wait for the answer. I have two daughters. They all love their
brother, but he is hard to be with, and they are not shy to talk about it.
DR.Bob {public msg} The siblings need the opportunity to speak from
the heart about the good, the bad, and the ugly. Then they can find peace
and love and acceptance.
Rebecca {public msg} that’s terrific DR.Bob, what are their ages if
i might ask?
DR.Bob {public msg} 21, 11, and 9.
Rebecca {public msg} Son is the oldest then?
DR.Bob {public msg} Tariq is the oldest.
Rebecca {public msg} wow@that age they are doing so well.
Moderator {public msg} Ron you have a question.
Ron {public msg} what kind of parents do you find at the various
support groups you hold , DR. Bob? What works in that environment?
Rebecca {public msg} My children are 8/almost 9 and 11, I can’t
even imagine the weight you have carried....God bless you and family.
DR.Bob {public msg} I find parents who are warm people looking to
connect with others.
Ron {public msg} Is it because they feel isolated at home?
DR.Bob {public msg} What works is to ask them to share their
suffering and their joys. This always seems to inspire and uplift people.
Great question Ron. I will think more about it.
Ron {public msg} is it tougher for dads or moms to talk about
what's bothering them?
DR.Bob {public msg} Some are isolated at home, Some not. I think it
isn't realistic to think that one relationship can get you through this.
As the Beatles sang, "I get by with a little help from my friends".
Ron {public msg} hmm... Never us dads. lol
DR.Bob {public msg} It seems tougher for dads. We try to be the
strong silent ones.
Moderator {public msg} lol
Ron {public msg} Yeah, that doesn't feel comforting many times.
DR.Bob {public msg} Men are more able to open up with other men as
opposed to in a mixed group.
Rebecca {public msg} ahhhhhh I could picture this, men don’t
chatter like us women do.
Ron {public msg} Hmm, I can imagine.
Rebecca {action} Smiles.
Ron {public msg} Thanks DR.Bob.
DR.Bob {public msg} Check out www.fathersnetwork.org for great
articles by and about dads.
Moderator {action} . o O ( They somehow think by not expressing
their true feelings to us they are saving us from pain. )
Rebecca {public msg} DR. Bob it was great having you with us
tonight. Look forward to a return date someday.
Ron {public msg} great...
DR.Bob {public msg} Thanks for having me, and I would be happy to
return.
Ron {public msg} Thanks for the time DR.Bob, and thank you
Rebecca and Ms. Moderator.
Moderator {public msg} Thank you Ron.
Ron {public msg} You are a good communicator DR.Bob, typist and in
person.
Rebecca {public msg} Please contact Ron anytime for a return
request. We are open 24/7 here if anyone ever wants to meet up and just
chit chat also...
Rebecca {public msg} Thanks Ron.
Rebecca {public msg} And your welcome , anytime ;)
Ron {public msg} Folks... DR.Bob has volunteered his time to help a
non profit produce a message on video... should be available on talkAutism
and www.specialfamilies.com in another week or two.
Moderator {public msg} That is wonderful Ron!
Rebecca {public msg} Great! Thanks DR Bob!
Ron {public msg} Very moving and hopeful message about having a
child with autism.
DR.Bob {public msg} You're more than welcome.
Rebecca {public msg} I will look forward to hearing it, thanks!
Cyn {public msg} thanks!
DR.Bob {leaves}
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