SPECPAR
MAILING LIST
This list was started to give parents of multiples where
one or more children have special needs a place to share
the joys and struggles of our situation. We currently
have about 40 members, and traffic on the list is
relatively slow (it's summertime *S*)
Click to subscribe
to specpar
Some of our list members are :
I am SUZANNE, married to Mike. We have 3 children,
Stephanie, Kristen and Kevin. The girls are 9 1/2 years,
identical twins, diagnosed as moderately autistic with mild
mental retardation. Kristen has had one seizure: the EEG
showed a left temporal lobe spike, the MRI came back normal.
So I am confused
on what happens next. Kristen also has Klippel Trenauney
Weber syndrome: that is leg overgrowth, hemangioma but
NOT YET any leg varicosities. (whew). She may need leg
surgery in a couple of years. Even though Kristen has issues
that Stephanie doesn't, it does not mean they are "no longer
identical". This is
called having a discordant gene.
Kevin is 6. He is very bright and I have concerns about how to
handle his sibling issues. He was asking questions about his
sister at age 4 (!) and I looked into SibShops for him. In our
area, they start at age 8. What do I do now??????? I just
give him a lot of my time and signed him up for T-ball so he'd
have some peers. I think kids in his class are put off by his
smarts;
I feel badly for him. Whole other issue here....
At any rate, we live in Connecticut in the U.S. I love our school
system.The girls are finishing 3rd grade with their classmates;
the extras being that they receive speech and OT and adaptive
PE; they also each have their own full-time aide support and
modifications to their work. They are in separate classes.
That's the general overview. Hope to hear from other folks.
This service is GREAT! :-)
JEANETTE - Hi! I'm married to Chris and have
Rachel, Kirsten, and Dylan, born October 9, 1995. All of them
are affected with PDD (Pervasive Developmental Disorder).
We first found out about the kids' challenges when they were
about 20 months old, and have been doing various types of
therapy with them ever since, with great results :-) They are
currently in day care 3 full days a week (2 aides between the
three of them), get speech therapy, about 18 hours a week with
contract workers, and will be starting OT fairly soon
(hopefully). Rachel and Kirsten are just beginning to talk
which is very exciting for us. I've found it SO helpful to talk
to other parents who understand the challenges of multiples
with special needs- as well as great ideas on how to handle
things.
AUDREY - Greetings from Ontario, Canada. I am a
stay-at-home but works part-time mom! Kyle and Janelle, my
twins, were born 6 weeks early and weighed 4 lbs 15.5 ounces
and 4 lbs 1 ounce respectively. This was my introduction to
motherhood! Kyle was discovered to be Deaf at 2 weeks of age.
With having twins and a child who is Deaf my life did that
unexpected 180 degree turn. I am so glad it did! I have learned
so much from my own experiences and from the people I meet
because of my kids.
Shannon was born on St. Patrick's Day four years later. What
a joy to have just one baby to deal with!! She was a great
infant/toddler and the twins were a great help.
After becoming a single mom and re-entering the workforce
life did that turn again and I got married in 1993. One year
later Austin arrived. You can imagine my relief when there was
just one!
I would love to hear from anyone who has a child who is Deaf
or Hard of Hearing or anyone who has questions to ask me.
As a way of closing I want to borrow a quote from a great
friend: "No one ever went blind from looking at the bright side
of life" .
CATHY - I gave birth to 2 healthy baby boys,
Keenan and Adam, at 39 weeks gestation on Feb 21st , 1991
weighing 6 lb 6oz and 6 lb 13 oz. Life has been a whirlwind
since that day, as I proceeded to have 2 more bouncing baby
boys, Bradley on Dec 25th, 1992 and Liam on Sept 22nd 1994.
Life with twins and more is never quiet or dull. One of my
twins has a behaviour disorder, while the other has suspected
mild Tourette Syndrome. I have learned a lot about our
education and medical system. One thing stands out the most
and that is, trust your instinct and be persistent in advocating
for your children. Also, there is no room for guilt when you are
seeking solutions.
I work full time outside of the home and my husband has been
home full time, by choice, with the boys since April 1995.
KAREN:
When my beautiful daughter, Katie, was 10 months old, I was
21 weeks pregnant I had a sonogram to find out the sex of our
*one* baby (unexpected pregnancy). The ultrasound tech said,
"You want to know the sex of WHICH ONE...there are
THREE!!!" At the time, Baby B had absolutely no fluid, he was
about 3 weeks behind in growth from the other two, so the
doctor took a "wait and see" stance. By 25 weeks, while the
other two flourished, poor little Baby B's status remained
unchanged. The hospital brought in the grieving committee who
helped us plan for his "imminent demise." We were told to give
Baby B a name, contact a mortuary, choose a casket, and that
we would do just heartbeat checks on him. Once he died, we
would have four weeks before he would become toxic to the
other two in the womb and they would have to schedule a
c-section then. .....welllllllll.....at 26 weeks, little Baby B
(Bradford, by then) decided HE was worth MORE than just
"heartbeat checks" and that it was time to start producing
amniotic fluid and growing. At 36 weeks, they did an amnio on
Bradford to check for lung maturity and, lo and behold, it was
equivalent with a 42
weeker! On May 29, 1992, Tyler (4-2), Jameson (3-7) and
Bradford (2-10) were born. No ventilators, no IVs, no blood
transfusions or any of the complications you hear about with
multiples. When Bradford was born, his umbilical cord was so
small, it fell apart in the doctor's hands--he truly IS a
miracle. Nevertheless, the boys have all had developmental
delays, as well as speech problems, but Bradford is our miracle
who has
many many needs. He's microcephalic, and much smaller than
the other two, has some vision problems, and is mentally
retarded.
With the high highs and low lows of having a child with special
needs, there have been times (in my darkest hours) when I've
looked up to the sky and asked the Lord, "What exactly were
you THINKING when you put US in charge of a child with
special needs?" but it all came together at our IEP meeting in
June, preparing for the upcoming year. They'll all be at a very
chichi school nearby that's VERY difficult to get in to (I
sent their birth certificates in while they were still in the
NICU for the waiting list!) and the administrators were so
negative and tried every trick in the book to encourage us to
send him to "another school...ya know, where they can handle
THOSE kinds of kids." Without rehearsing. Without major
preparation. Without even talking about it much ahead of time.
Dennis and I worked together like a smoothly oiled machine,
very professionally and tactfully going toe-to-toe with every
"concern" they had. As we drove home, I thought, "Whenever
I've wondered WHY....I know NOW. There are no two people
on this planet who could have done a better job in that room,
advocating and fighting for our little boy. Nobody, and I mean
NOBODY, could love our little Bradford more than we do and
fight for his rights better than we. THIS is why God chose US
to raise Bradford!"
Having a child with special needs brings forth a myriad of
emotions--and that's why this list is such a perfect forum. We
can all RELATE to one another--whatever they're feeling,
we've most likely gone through it, or are going through it now
and know we're not alone. Thanks, Jeanette, for setting this all
up. You have no idea how many lives you've touched, how many
people you've helped, and the "connection" you've created for
so many of us who have sometimes questioned our sanity or
wondered "Am I the only person who feels this way...?" Thanks
again.
JOYCE -My name is Joyce and I am the single mom
of Justice and Destiny, boy/girl twins who are now 5 1/2. I
had one of those pregnancies from hell although it didn't start
out that
way. Things were relatively uneventful until I went for my
first
ultrasound and got that fateful news that there were two
babies:) I had an amnio at 18 weeks, and at 19 weeks starting
spotting. My doctor put me to bed but didn't think it was
anything serious, so after a week I had to return to work. My
water broke a few weeks later, on New Year's Day. But I was
so blissfully ignorant of pre-term birth symptoms I didn't
even realize what was going on and continued on with my usual
activities for another two weeks. I ended up in the hospital on
Martin Luther King Day, January 15, 1993. But somehow,
*miraculously*, I did not go into active labor until
January the 19th when the children were born 15 weeks early
at 25 weeks gestation. They remained in the hospital, first in
the NICU and later on in the Special Care Unit for a total of
4 months. The first year is a blur, the second year not much
clearer. At about age 2 1/2 our pediatrician suggested that I
needed to have Justice seen by a developmental specialist
because he was exhibiting "signs of atypical development"
(don't you love the jargon?) The long and short of it is that he
was diagnosed with PDD/NOS which is part of the autistic
spectrum. He has recently been re-evaluated and found to have
full-fledged autism, meeting almost all the criteria as given in
the DSM IV.
Destiny is a bright and happy child not currently diagnosed
with anything, though the pediatrician and I strongly suspect
ADHD. The children get along together while, especially now
that Justice is interacting more and more and learning
appropriate play skills. Sometimes she does imitate his
behavior, though and that does make for some very lively and
noisy(!) times at home.
It has all been quite an adventure so far:) Joyce