Hi All

TwilightsTwin: I understand your trials. My DD was born at 24 wks and
spent the next 110 days in NICU. But overall, she has managed to pull
through w/flying colors despite the odds. She also had the blood
transfusions and the numerous infections but she doesn't have any of
the side effects I was preparing myself for. She wears glasses (when
she decides to keep them on...any suggestions on that one!) and uses a
walker to walk or should I say run! Its tough keeping up with her! She
trys to keep up w/her twin sisters. (Yes I said twins! but they were
easy compared to DD) We just received her new wheelchair on Monday and
she loves it. Thank God I think my back was going to break soon. LOL!

Anybody having any problems w/seizures this time of year? DD usually
has seizures peak during the months of November to March but this year
they seem to keep coming. She is on Keflex and it was doing some good
for awhile but now it seems to not work as well. She has an appt next
w/neurologist but I wanted to know if anyone else has seen an increase
w/their child. Thanks!

mrsart,
Thanks for sharing your story. My son doesnt have seizures, so I do not
have personal experience to share whether or not they could be season
related. I do know my sons asthma goes nuts in early spring, and then
again in the fall.


Ive been on the phone all week scheduling a new appointment for my son
and I. My cardiologists are all at the Mayo clinic and I have a huge
check up this summer to see if I'll need a 3rd open heart surgery now.
(I really hope not because I start school again soon and not being able
to lift over 5lbs for six weeks is impossible when you are a single mom
with a 25 lb boy)But I also have a referal in place for my son to see a
pediatric neurosurgeon/specialist at the Mayo clinic. I will keep you
all up to date when i know when that will be.

Hello all... you can count me in too.
I have an adopted three year old son with down syndrome, iris coloboma,
retina coloboma and two holes in his heart (ASD and a PDA). We recently
set up an appointment to do heart catheterization to close the holes in
his heart. It was not an easy decision since we were told we had the
option of open heart surgery or catheterization. I've been away and
haven't been on much, but I'm glad I came back to find this group on
here! When we adopted our baby we were told his holes in his heart
would close up, that didn't happen, but life sure wouldn't be the same
without him.

TwilightsTwin, we will keep you and your son in our prayers. I had no
idea of the extent of your trials. May God watch over you and your DS.
Keep us posted.


Mystique42, hello and welcome to the group! I salute you for adopting a
child w/special needs. It takes a big person to do that. I know what
you mean when you say life hasnt been the same since you adopted DD. I
can't remember life and how easy I had it before my youngest came into
our lives. She sure keeps us hopping! God bless you and yours and we
will pray for your family also. Keep us posted on his progress. When
is his surgery scheduled?

Mystique42, Sorry I mean DS not DD. Fingers aren't working

Mystique42,
Welcome to the group & thanks for sharing your story. Keep us all in
touch and let us know how everything goes. The young body has an
incrediable healing abilty. You will both be in my prayers!

Okay...time to vent. Ex-husband is being a jerk again.

He calls me today at work (our calls our recorded per NASD
requirements). Instead of telling me to call him back from outside on
my cell, he starts to tell me how his current wife went to see my son's
therapist to talk about him.

Now, my ex's wife is a nice girl, but she is not my son's mother. There
are HIPPA laws which I will find out if they have been violated. I
think both parents have to give permission in this case.

Now I would not be so upset if I knew about it beforehand and given my
okay. I just know that he did this after the fact just to piss me off.
Guess what? It worked. Then he goes on about some of the testing we
were going to get done. I reminded him that the school did the
beginning of the tests per his orders and the next rounds are not coming
because of their results. And then on to schools for next year. I am
just not sure about moving him for various reasons.

Many expletives here...use your favorites. I just needed to vent.
Thanks for listening!!!

always here when you need to vent. Exs can be a huge pain! Hope your
day gets better

Sorry have not been on for a few days but wanted to say a few things
now.

Seizures can be triggered by a number of things heat being one of the
top things. Also medications have to be lowered or highered sometimes
because the body becomes used to them and they dont work as well. By the
way yes during this time of year seizures are alot more. Try to keep the
area around you cooler it might help.

Sorry about the Ex in most states it required both parents to approve of
someone else getting involved.

Hope this helps

my son is 9 and has ADHD. i am looking into changing his meds b/c the
adderall is not working anymore. he was recently classified OHI (other
health impaired) for his ADHD and will recieve help from a sp. ed.
teacher next year.

btw, i am also a sp. ed. teacher. i have taught all types of
disabilities including autistic children. i have received training in
working with autistic kids. so if anyone has any questions that i
could help with, just ask. i also teach parents how to decipher an iep.

i have been talking to a couple of parents about their situations....one
thing i want to say is.....if your child is in special
education.....read your parent rights booklet. you are part of the team
and a lot of schools try to get away with things b/c the parents are not
aware of their rights. just a tip! hope it helps.

Welcome winnie,
My son has therapy through the school. They come to our house though &
I must say theyve been real great.

Winnie-Welcome! I agree on the Parent Handbook. I'm lucky that I have
a friend who is a Special Needs teacher in my school system. They tried
to get one by me earlier this year and I called them on it! The fun
thing is that the system does not consider CAPD. That will make getting
services if he does have it more fun.

Dees-I'm taking it up with the therapist. She might be pissed at me for
missing a meeting. Gee, remember I'm a working Mommy. My director's
director was in and I got pulled on a project.

Time for bed, Darling JSH Parents. Love y'all. Don't know what I'd do
without you all! Really!!!

Winnie,

Does that handbook say anything about the Right to a Diploma? I met
with the high school faculty that will be there for my daughter when she
starts high school this fall back in May, and they drop the bomb on us
parents that had no idea in haities, (meaning HE--) that our kids, in
the Special Ed classes would get a High School Diploma by the State of
South Carolina. I think that really SUCKS!!!! If you or anybody else
have any information about this, let me know. I am curious if any or all
of the States do that. These kids may have disabilities, but they
aren't stupid, they have special gifts and some of them are smarter than
normal people. It really bothers me. Thank you all for making this
post, and it really helps to know that we are not alone out there.

Your friend,
Fun/ SC

i dont know about sc, but in nj our kids get diplomas. check with the
dept of ed for your state.....that does not sound right. if i get any
more info, i will let you know.

Fun-It depends on the school district. If your child has met the
requirements for a diploma, they will get one. If not, they get a
certificate of completion if they age out. Do not let them give you the
run around.

A friend's sister teaches HS in SC. I will try to find out.

Be well, M

ok, i have a serious issue here. if yall read back, u'll see all the problems my 9 yr old has. he's getting worse behavior wise, and both my mom and his dr have suggested enrolling my son in the school for the deaf, only prob is, its like a boarding school, i dont know if i eoulc deal with that. what does everyone think i should do?

no thoughts on this huh?

my nine-year-old has severe hearing loss in both ears, at a loss of 85 decibels. she's also asperger's with an auditory processing disorder. toss in asthma and some pretty severe sensory issues, compounded by moderate-severe eczema...and i'm often pulling my hair out.

jordan wears hearing aids in both ears and is receiving an FM machine for school, thank goodness. i find when she's driving me nuts, it's usually because she's overloaded herself...and i rub her back very firmly and do joint compressions to bring her back under control.

any new words, and we practice them over...and over...and over...and...until she manages the correct intonation, or a very close facsimile thereof. i couldn't imagine living without her...i think she needs me more than she'd need such a school. each case, of course, is different...but sometimes teachers and doctors are quick to wish to pawn off a child rather than put in the extra effort.

today was raegan's neurology appointment.

rae is four, and she has asthma, GERD, moderate-severe dysphagia on the pharyngeal level requiring nectar consistency of all liquids, benign congenital hypotonia, hypermobility syndrome, and global developmental delay with a 45% cognitive delay.

anyhow...neurologist was a bit concerned today, apparently he couldn't get reflexes out of either knee or heel, regardless of how many damned times he smacked her poor little knee. (i know, it doesn't hurt...but it sure looked like it.)

when i asked him what was up, he stated that he would wait for any discussion until she's had her genetics appointment...and he would tell me in SIX MONTHS!

grrrr...

he did say that she was in "no immediate danger since she's not really regressing" or some-such.