Welcome to Hunter Gale's Home Page :)
"Hi" I'm Hunter Gale!
You Can See My Picture Link Below!
Thanks for Coming By :)
Gramps Updated this Webpage
August 2008
This is My Family
October 2007
Grandma, Gramps & Hunter
October 2007
This is me in a Boat
Fall in 2006
Mark "Gramps" Meinhart holding Hunter
at Grant Hospital
in Columbus, Ohio
His birthday is September 15,
1997
BEFORE I GO TO SLEEP
by Sally Meyer (Copyright-Used by Permission)
Dear Mommy, don't
you cry now and Daddy don't you weep.
I want to whisper in your ear before I
go to sleep.
I know that when I came here I seemed perfect in every
way
and you were so proud Daddy when you held me on that day.
And Mommy
when you kissed me and wrapped me up so tight,
I felt as if I belonged here,
and everything was right.
When things got really scary and I began to
slip away
I saw your face dear Mommy as you knelt by me to pray.
And
Daddy, I always notice when you wipe away a tear,
or watch the other little
boys as they run and laugh and cheer.
I may not be able to tell you how much
I love you so,
or even show you how I feel and what I really know.
But
when you hold me Mommy at night when all is still
I hear your dear heart
beating and I know that all is well.
And Daddy when you take me to the park
to run and play
I know that you still love me though the words I cannot
say.
So Daddy don't you cry now and Mommy don't you weep,
I want to tell
yousomething before I go to sleep.
I may be sort of different, and you
may not understand.
I know that I am not that child that you and Daddy
planned.
But I love you both so very much and I know you love me too
and
one day when this life is done you will feel my love for you.
I know the
future is unknown and you will always have to be,
the one's that love and
listen and take good care of me.
The road we walk is rough sometimes and
you cry alot of tears,
but one day we will turn and laugh as we look back
o'er the years.
So Mommy don't you cry now, and Daddy please don't
weep...
I want to say,
I LOVE YOU!
before I go to
sleep.
To all of our friends,
Over the past year, several of
you have kept in direct contact with us regarding our son Hunter's diagnosis of
agenesis of the corpus callosum (ACC). I would like to update everyone, and am
also enclosing a question-and-answer sheet that I myself made up for people
interested in learning more about ACC.
FACTS ABOUT ACC
*definition: ACC (Agenesis of the Corpus Callosum) is a rare
congenital abnormality involving a partial or complete absence (agenesis) of an
area of the brain made up of 200-800 million transverse fibers (the corpus
callosum) that connect the two cerebral hemispheres. The two hemispheres
function properly; they just cannot communicate between each other. Information
is absorbed by the person, but the brain cannot process it.
*symptoms:
problems with neurological processing
problems with vision
problems with
hand-eye coordination
seizures
problems with feeding
developmental
delays
memory impairment
high pain tolerance
difficulties with
math
reading problems
macrocephaly/microcephaly
mental
retardation
heart defects
literal interpretation of speech and
events
speech problems (slow)
other midline defects (i.e. cleft palate,
kidney problems)
sensory integration disorder/ sensory
dysfunction
dysmorphic facial features (flat nose, low-set ears, close- or
wide-set eyes)
---a person with ACC may have zero, one or all of the above
symptoms, as ACC varies from case to case. In Hunter’s case, for example, he has
never had a seizure and has no eye problems so far, but he does have
developmental delays and sensory integration disorder.
*estimated
incidence: 3 in 10,000 in the general population have ACC. Among all children,
the incidence is 0.0005 % to 0.7 %.
*diagnosed via an MRI or a CAT
scan
*cause: associated with more than 50 other syndromes and disorders,
including Cerebral Palsy, chromosomal deviations, and Fetal Alcohol Syndrome,
but can occur for no apparent reason
*spectrum: at one end, affected
people are severely retarded and have physical disabilities, and at the other,
people appear to others as completely normal, but may have learning disabilities
or developmental delays
*according to the National Organization for Rare
Diseases, ACC is diagnosed in approximately 90 % of patients during the first 2
years of their lives.
*the corpus callosum begins forming at six weeks
gestation, and can be viewed via sonogram by 20 weeks. It cannot form after
birth, but the brain CAN create its own pathways/fiber network later
on.
*information: Gary and Kathy Schilmoeller
The ACC Network
5749 Merrill Hall, Room 18
University of Maine
Orono, Maine 04469-5749
(207)
581-3119
Email: um-acc@maine.edu
Webpage: www.umaine.edu/edhd/research/accnetwork.htm
---November 1990= 1st
Directory of Families published with 45 families
---today= Directory is
updated yearly and has 465 entries
---over 100 families belong to the ACC
Listserv and offer support and information to each other on a daily basis via
e-mail
---websites of interest:
*"Our Angels" Homepage: a listing of
biographies and photos of many of the children whose parents subscribe to the
Listserv:
http://www.fortunecity.com/millenium/scooby/195/
*ACC Listserv
Welcome
Page:
http://www.geocities.com/HotSprings/Villa/2648/accwelcome.html
*Angels
Around the World
Page:
http://members.tripod.com/~scenicbeauty/AngelsAroundTheWorld.html
MARCIE ON SEPTEMBER 15, 2002
Hi everyone,
Every so often I like to write
the listserv and update everyone on how my son Hunter is doing. I've been a
member of the listserv since April 3, 1998--the day after Hunter was diagnosed
with complete ACC (he was 6.5 months old). Today Hunter is FIVE! I can hardly
believe it myself! I just measured him and he is 42 inches tall exactly--he's
about 42 lbs., too!
Rather than say everything that my son cannot do on
his fifth birthday, today I want to celebrate all that Hunter is able to do.
Hunter, at age 5, is able to walk, "run" (in a VERY clumsy manner), walk up and
down ramps, climb up and go down a slide, climb up stairs using a railing, scoot
down stairs, and go down ONE step while standing up (without having to sit down
and scoot). He is able to put a spoonful of food into his mouth when he is given
a spoon. He can brush his teeth. He can sign "more," "my/mine", and "eat." He
sometimes will shake his head "no" if he doesn't want something. He recognizes
his name when it is typed (knows it from other words). He falls asleep on his
own in his own "big boy" bed, and sleeps 10-12 hours a night. He goes to school
every day for 6 hours a day, and has lunch in the cafeteria. He is able to
follow a photo schedule. He understands basic one-step commands such as "come
here". He understands a LOT of words and ideas. He is able to show his
feelings--he cries when he is scolded, and gives kisses and "love" (hugs). He is
such a hard worker, and a beautiful little boy. He is truly an angel that God
has sent down to myself and my family. Although the past five years have been
anything BUT easy, I am blessed that I have been chosen to be the mother of such
a special boy.
MARCIE ON OCTOBER 27, 2002
A brief Hunter update for you all who know us (we've been on this listserv ever since Hunter
was diagnosed at 6.5 months of age)... Hunter started his 3rd year of preschool
in a special class for chlidren with autism. He did okay his first year (going
half-days), and wonderful last year (going full days). This year has been a
struggle. He has the same teacher, but they moved the class to a new
school---strike one for Hunter (he HATES change and really liked his old
school). We also took him off of the gluten-free, casein-free (GFCF) diet, which
quite a few autisitc children are on, and which we didn't think was helping
him--strike two for Hunter (we didn't realize how much it WAS helping him until
we took him off it!). Hunter is really struggling with being frustrated; we
think it's the terrible two's--strike three for Hunter (again he is nonverbal,
so he's really getting upset about not being able to communicate with us).
Hunter has shown us how upset he is about everything by lashing out...
biting and hitting, specifically. First it was just the other kids in his class
at school whenever they got in his space. Now, they're all autistic, and last
year he was hit/bit more than once by other children, so we didn't overreact...
well, now it's totally unprovoked. He'll approach a child and hit/bite him for
no reason whatsoever. He's also started doing it to adults--especially those who
are trying to work with him or get him to do something.
We recently took
milk out of his diet again, and we're already seeing a positive change... which
has told us what we had hoped all along--that the GFCF diet really DOES help
him. I'm hoping the school will start seeing more of a change in him as well.
That all being said... we are starting an in-home ABA (applied behavior
analysis) program with Hunter. The county in which we live is putting all of the
autistic children on a waiver program, and a large sum of money will be allotted
for families who do ABA at home. So, I'm in the process of hiring therapists
right now, and we should have the waiver next month sometime and be able to
start our program full-force by Christmastime or even sooner, hopefully. So far
his ABA consultant comes over 1x/week to work with him and show me drills to do,
and I work with him daily for a small period of time after school. However, even
in just the little time we've been working with him, I'm AMAZED at how well he's
doing... he is able to match photos with 100% accuracy, and pictures of random
objects almost as well. He is also doing great with matching letters (about 75%
accuracy right now). Just yesterday I taught him to "touch head" and "touch
nose", and it only took about 20 minutes--he's got them both down cold :) What
ABA is showing us is just how much Hunter DOES know.. and it's SO exciting to
see!!!
GRAMPS ON DECEMBER 16, 2002
It's been way too long
since we put any updates on Hunter. I did pull the October one off the archives.
Marcie's been busy applying for ABA waiver money from the county/state. Looks
like it will be late winter/early spring before the money kicks in. In the
meantime, we are using previous money collected to start up his ABA program,
also to help pay for his appointments/medicines for Dr. Seigel.
Please feel
free to email me for a Meinhart 2002 Newsletter, which includes information on
Hunter and I will also include Hunter's Information Document that is being
giving out in front of house during the Christmas
Season.
meinhartstock@yahoo.com
MARCIE ON FEBRUARY 17,
2003
I apologize for it being so long between updates about Hunter. He is
now a robust 5 year old... school continues to be a struggle for Hunter this
year. He lashes out at anyone and everyone, especially his teacher, aides, and
therapists. He doesn't like demands to be placed on him, and will react by
hitting or biting anyone within range. Hunter usually has 5 or 6 "bad days" in a
row, and then a sudden "good day" (no aggression whatsoever at school), which we
can't explain. His teacher has enlisted in the help of behavior consultant, who
is observing Hunter at school to help us figure out what's going on. Possible
explanations right now are biological (diet issues) as well as environmental
factors (for example, fluorescent lighting).
The shining light in
Hunter's life right now is his home-based ABA therapy program. Hunter is
absolutely excelling with the team that I hired. Led by Jen (our ABA
consultant), the three college-age girls who work with Hunter are helping him to
realize his true potential. We only recently (mid-January) started Hunter on a
scheduled ABA program (10 hours per week), and his progress already is
astounding to all of us. Hunter has mastered several programs already. He can
receptively identify letters A through I. He can receptively identify the colors
red, blue, green, yellow, and orange. He can receptively identify the animals
dog, cat, cow, bird, sheep, chicken, and mouse. He can receptively identify
photos of myself (Mommy), his grandfather (Gramps), and his grandma (Grandma
Dee). He can receptively identify the articles of clothing shoes, socks, jeans,
shirt, coat, hat, dress, boots, and shorts. He can receptively identify photos
of TV, computer, cup, spoon, and mirror. He can scribble a line on a piece of
paper with NO assistance whatsoever. He has learned to put shapes in a shape
sorter, to take shapes out of a container on command, and to roll a toy car back
and forth (even taking turns!). He will play on a toy piano, and he will bang on
a toy drum.
ALL of these were unimaginable to us just a few short months
ago. He is continuing to learn the letters of the alphabet, more animals, more
people, more articles of clothing, more colors... we are working hard on
matching pictures, more non-verbal imitation programs.... he is also starting to
learn his numbers. All I can say is, WOW! Typing it all out makes it that much
more REAL... how truly far he has come.
The best part? Hunter is not
aggressive toward his ABA aides!! He uses a token-based reinforcement system,
where he earns stars for perfoming his tasks. After 3 stars, he gets his
"reward" (usually either PlayStation or his computer game). He loves to work for
his stars, and smiles when you ask him about it. On occasion, he will get upset
and try to lash out. However, while Hunter is working, his Blue's Clues cassette
tape is playing. If he chooses to try to bite/hit his aide, the aide simply
turns off the tape player, and then hands Hunter a small photo of the tape
player. When he is ready to have "quiet hands" (no hitting/biting), he hands the
photo back to the aide (a la the PECS system of picture exchange). This system
has worked REMARKABLY well...during a typical 1.5 hour session at home, Hunter
will become aggressive 3-4 times at most (as compared to 3-4 times in a 10
minute session at school), but at home it stops as soon as the tape player goes
off. He has learned how to control his behavior.... this is AWESOME! We started
the token-based system in late January, and Hunter picked it up
almost
immediately.
The bad news is that the county has NOT came
through with the promised waiver money. Right now we are financing Hunter's
program with money that was previously collected (through the sale of CDs and
donations from the Christmas lights display). I am so thankful that we do have
this money, as there are other families who are also waiting on the waiver who
are not able to begin their child's ABA program due to lack of funds. However,
the money we have will only last so long, and with the Medicaid cuts that have
been proposed, we are looking at the possibility of never receiving the
waiver... or at least waiting another 1-2 years or more for it.
Please
keep Hunter in your prayers as we embark on the journey to find a new school for
him this fall, as he will be turning 6 and will not be able to attend the STACK
preschool program any longer. Also, please continue to pray that we figure out
what is making him so upset at school (and sometimes at home) that he needs to
hit or bit those who love him so dearly.
GRAMPS ON MARCH 31,
2003
I added a link below to some pictures taken of Hunter.
I have
uploaded 16 Pictures of Hunter taken the past 2 months. Hunter usually takes
good pictures but these came out very well.
There are 5 pictures taken
recently at my nephews going away party where Hunter is starring at his cousin
and smiling a lot. For about 10 minutes, Hunter could keep his eyes off her
while she was playing his computer game. These pictures says a lot, but if you
were there is was unbelievable.
Enjoy the pictures and I hope the link
works.
MARCIE ON APRIL 12, 2003
Shortly after Christmas,
Hunter began a full-fledged home ABA (Applied Behavior Analysis) program. We
started with 10 hours a week, and we are now up to doing between 20 and 25 hours
per week. With Hunter attending school 30 hours each week, we are unable to do a
full, 40-hour per week program as recommended by most psychologists. This
summer, we plan on adding to his hours and hopefully getting up to 40, as he
will be off from school.
Hunter’s progress with the ABA program has been
no less than astounding. Before beginning the program, we could only assume what
Hunter knew. And according to the psychologists and doctors who had tested him,
this was very little. Hunter’s IQ was tested at 48. His prognosis was poor.
After just 3 months of intensive therapy, Hunter has accomplished the following
things:
*Knows alphabet (all of the uppercase letters; we’re now starting
on lowercase!)
*Knows numbers 1-10
*Knows shapes and colors
*Knows 70+
words receptively (using flashcards), including common objects, toys, people,
emotions, articles of clothing, etc.
*Able to remove socks and shoes with
only minimal assistance
*Has mastered several toys for independent and
interactive play, including stacking 2 blocks, doing a shape sorter, and rolling
a toy car
Currently Hunter is learning even more new things. We are
continuing to add to his receptive vocabulary with more flashcards. He has
started a “chores” program where he wipes off the table after spraying it with
water. He has started a program where he is learning how to wash his hands (a
multi-step process). We are introducing more new toys, such as a bowling set,
and also water play. Even more impressive is his ability to work and behave
appropriately. We use a token-based system where Hunter earns stars for doing
various tasks. Upon receiving three stars, he gets a reward that he has
previously chosen.
As you can no doubt tell, I am extremely proud of all
he has learned! If someone would have told me a few months ago that Hunter would
soon be doing all of the above, I would be beyond shocked, and would have
thought that they were pulling my leg! While Hunter is still nonverbal and
exhibits extreme delays in all areas, we are more optimistic about what the
future may bring, due to the fantastic progress he has already made.
Because we do not have the Individual Options or Home Care waivers, we
do not qualify for Medicaid, and thus must pay for Hunter’s ABA program out of
our own pockets. ABA therapy is not cheap.
MARCIE ON MAY 26,
2003
Hi everyone,
Right now we are going through a very difficult
time with Hunter. He started taking Risperdal about 1 month ago. We started at a
very low dosage (0.25 mL 1x/day), and have worked our way up (still at a low
dosage of 0.5 mL in the AM, 0.25 mL in the PM). At first we were seeing a mild
improvement in Hunter's behavior. He was out of control after he was weaned off
of the Prozac, but the Risperdal seemed to calm him a bit (although it's hard to
tell with such a low dosage). For the past 1.5/2 weeks, he has been just awful.
It started with his behavior at school (tantrums, crying, wanting to sleep all
day long, refusing to do any work, etc.), and has escalated into the home. Last
week I took him to the pediatrician, and he has left ear infection, with fluid
in his right ear. So he's on amoxicillan. Usually the antibiotics begin to work
by the 4th or 5th dosage for Hunter. He's had 9 dosages now, and he is (if
anything) worse. I don't think it's pain from the ear infectoins, although I've
given him Advil (which doesn't seem to help). He's taken a nap yesterday and
today (he hasn't taken naps since he was 3, and he's almost 6!). He wakes up in
a terrible mood, demanding that I put on his PlayStation football game. After a
while of that, he just lays on the floor and cries (nothing will appease him). I
tried just getting him out of the house; didn't help. All of his ABA sessions
this weekend have been struggles, to say the least.
I am going to call
his doctor on Wednesday (he is off on Tuesdays) and tell him all of this.
However, I wanted to ask the "experts" here on the list for your opinions as
well. Could Risperdal be causing this??? The bottle says it may cause drowsiness
or dizziness... however also at night he seems very restless... I'm at an
absolute lost. Nothing makes him happy right now. Also he's been awful in the
car. Previously he loved car rides, but now he screams in the car. All this has
occurred in the past 2 weeks (again we started the Risperdal about a month
ago).
MARCIE ON JULY 16, 2003
This was a VERY long meeting
and was filled with items that I didn't really understand, but I want to post
what I BELIEVE to be true regarding I/O waivers. Other things were discussed as
well regarding CAFS and other issues, but I am just going to post abou the I/O
waivers.
DEFINITELY TRUE: The state MRDD has asked for 2000 I/O waivers,
and this SHOULD be approved by CMS within the next 90 days.
ALSO TRUE: If
all works out, and the county boards do their paperwork, the waivers will be
available for distribution in October. (It goes county by county--so if Delaware
for example gets their paperwork in, the state will not be waiting for Ross
County--again just an example--to get their paperwork in before giving Delaware
their allocated slots. However Delaware wouldn't get ALL of the available
waivers just because they were first.)
ALSO TRUE: Only 400 of the waivers
are designated for children. HOWEVER, if your chlid is on the emergency priority
list (which I believe many autistic children are), they are not considered in
the 400 count.
TRUE BUT MOST UPSETTING: Only every 1 out of 4 of the 2000
slots will be for new people... the rest will simple be reauthorizing existing
I/O waivers.
WHAT I MAKE OUT OF THIS: If 2000 are available, and only 1
out of 4 (or 25%) are for new families, then that means 500 are available to
those of us who do not have waivers. Take 500 and divide it by the 88 counties,
and you get about 5 waivers per county (plus a remaining 60 waivers). Even if
some counties do not use their allocated waivers, I honestly don't see how any
one county could get more than 10 or so new waiver slots. This doesn't help
those of us who are way down on the waiting list. I don't know where my son is,
but I do know that many are far down and this doesn't help them at
all.
Needless to say, I (and other parents present) were dismayed by this
news.
GRAMPS ON JULY 17, 2003
What's going on with Hunter.
He's not on any medication and/or special diets at this time. Hopefully he may
go a different medication down the road. He has had several ear problems which
seem to linger on.
He went to School this pass summer for 1/2 day and the
second half of the day and more he has ABA instructors come in and work with
him.
Hunter's interest has changed quite significantly again. He really
doesn't enjoy sitting down with a computer anymore. He also doesn't enjoy
watching me or others play 007 from Ninento 64. He really enjoys watching Joe,
Marcie's boyfriend, play Playstation Football. He also has gone back and started
watching the videos from a few years ago. He also seem to enjoy his bike rides
with Dee and I. I attached one of those buggies on the back of Dee's bike this
past summer. He really enjoys his small pool his home and even smaller at our
place. He enjoys going in and out quite a bit. He loves to see his Grandmother
Dee and his Grandpa Mark running around.
Hunter joined a special needs
baseball team this summer. The picture shows him quite happy. Honestly this is
all but true. He hasn't enjoyed any of it really. Also this past week he joined
a special needs Cub Scout troop, I don't know how this went and will
go.
Hunter will be going to another school program this Fall. Last year
was the worst disaster of his life and we're hoping this year will be more
encouraging.
I am currently working on an updated genealogy CD for Meigs
County, Ohio that I hope will generate more funds for Hunter's ABA therapy in
the coming year or two. It will be out in the 2-3 months.
MARCIE
ON JULY 22, 2003
Have some free time (this is Hunter's last week of
summer school; he only goes 9-11 AM due to ABA the rest of the day, but it's
still nice having 2 hours to myself) so thought I'd update a
bit...
Hunter's ABA program is going very well. We currently have 23
programs currently running (not including the ones in maintenance already).
Hunter gets between 30-35 hours per week of ABA. It's amounting to about 25
"academic" hours (in his ABA room doing his programs and maintenance programs),
with the rest being play outings and such. Here are his current
programs:
ALO (Auditory Listening something... he is presented w/ 2 toys
and the therapist makes one of the toys make it's noise--e.g. squeak, drum,
play, etc.--and then he has to "find same"--find the toy that made that
noise)
Alphabet (he's mastered all upper and lower case letters so we're
now on matching upper case to lower case)
Associations (he is presented
with 2 items and given a third one. SD is "What goes with ____". Example: "What
goes with toothbrush?" and he is to put the toothbrush down next to the
toothpaste (as opposed to the shoe for example)
Attending Attributes
(he's mastered all shapes and colors so now we're doing a combination... e.g.
"Touch red rectangle" from a field of 3 (red rectangle, blue rectangle, red
circle, so he has to discriminate shape AND color)
Big/Little (e.g.
"Touch big flower"; "touch little TV"
Block imitation (building a tower
of blocks-- he can stack 5 blocks now)
Receptive Body parts (he mastered
this program with Mr. Potato head, so now we're working on his own body in front
of a mirror--he's not so good at this!)
Chores (he mastered cleaning the
table so today we're beginning folding towels)
Drawing (tracing a
horizontal line--he can draw one but has a lot of trouble tracing
it)
Matching emotion pictures
Receptive emotions (e.g. "Touch
happy")
Fine motor imitation (new program--isolating a finger to touch a
stickeron his piano, and pulling off a tupperware lid)
Gross motor
imitation (throwing balls in a basket from 3 feet away, jumping off a step,
wheelbarrow)
Handwashing
Play imitation (water play--squeezing a
turkey baster to make it squirt)
Matching photos of familiar people (he
can receptively identify them all--he just HATES to match LOL)
NVI
(Non-Verbal Imitation)--cover ears, put puzzle piece in, turn door
knob
PECS (Picture Exchange Communication System) (YES!!! more
below)
Phonics (e.g. "What letter says llllll?" and he touches the
"L")
Interactive and Independent play
Self-help dress (he can now
take off his shoes and socks with VERY minimal assistance, and pull his pants
down AND up!)
Receptive commands (when he masters something via
imitation, we move it to commands--e.g. once he masters covering his ears on the
command "I do, Hunter do", it will go into receptive commands as "cover
ears"
Receptive numbers (he's mastered #1-#10 and now we are doing
matching the # to the correct # of blocks. He's up to 10!)
Verbal
Imitation (new program using his current sounds)
For most of his
programs, he selects from a field of 2 (a target and a distractor) until the
program is mastered. Once it's in maintenance it's given in a field of 3 (except
for programs like attributes where 3 must be presented from the
start).
We started PECS with Hunter 2 weeks ago. Here is how we're doing
it: We have a PECS book with velco on the front cover and on pages on the
inside. Also on the cover affixed with a velcro strip is a purple strip (made
out of tough binder material)--the "I want" strip. The "I want" PEC is
permanently attached to this strip. We put the PEC he's working on, on a velcro
strip above the "I want" strip. Here is what he has to do: he has to remove the
PEC (step 1), put it on the "I want" strip next to the "I want" PEC (step 2),
pull off the "I want" strip with the PEC on it (step 3), and finally, hand the
therapist the "I want' strip (step 4).
The therapist then helps him touch
each PEC, verbalizing it (e.g. "I want remote control"). We chose "remote
control" for his first PEC because he knows it turns on the TV and it gives us a
chance to also work on finger isolation (hitting the button). Plus he likes
remotes :)
Anyway he's doing VERY well with this, according to his lead
therapist. She assumed it'd take 3-4 months before he mastered his first PEC. To
master it, he will not only have to do the above process, but also with a
distractor PEC on the front cover. THEN he has to master it INSIDE the book (on
one of the pages--so he'll have to move it from the inside to the strip on the
outside), and then with a distractor inside. THEN and only then will it be
considered a "mastered PEC". After 2 weeks Hunter only needs a light prompt to
pick up the PEC off the book. He gets it on the strip without a prompt 90% of
the time, can pull off the strip on his own 100% of the time, and hands it to
you every time too. So he's definitely getting it! Once he gets the whole
process down, learning the PECS will be easy.
We're going to start a
potty-training program next week. We'll be taking data for 1-2 weeks to figure
out his "excretion schedule" but while we do that we'll be introducing the
"pottying routine" (35 steps in all!--almost all will have to be prompted 100%
at first of course). I wanted to start after summer school finished, and I only
have a month before I go back, so we're going to do all the pottying we can to
get him going... and then hopefully his new school will be supportive in
September.
Behavior-wise, things have been so-so. I think he's been
better since weaning him from the Risperdal, but I still would like to try
Strattera. Gonna chat SOMETIME SOON with Dylan about this. His pediatrician
really wants him on it before he starts school, and I agree.
Hunter's
greatest love (aside from his primary reinforcer--PlayStation football!) right
now is pools. My aunt has a large in-ground pool. On Sunday we spent a few hours
there with my aunts, uncles and cousins. He did SOOO great! He is tall enough
now to stand in it without being
underwater (I think the shallow part is
about 3'2" or so; so his chin barely hits the water), and he just loves to show
off by walking around in it. He also loved getting out and then sliding back in
on the sides, playing in the innertubes, etc. We put his TV/VCR with a video in
it by the pool, and for the first hour he watched it occasionally. We didn't
turn it on during the 2nd hour AT ALL and he didn't even notice! (HUGE for
Hunter as he does not do well outside or around people without this on). Anyway
my mom commented on how we hadn't seen him that happy in so long... and it's
true, he was SO excited and happy to be there. After I got him ready to go home
(it was getting late) he tried to get back in, shoes and all! He likes the
smaller pools in my and my parents' backyards, but I do wish we had an inground
pool closer by (my aunt lives about 25 minutes away, and car trips aren't
Hunter's favorite thing right now!).
OK I guess that's enough for now...
thanks for reading all this (if you made it this far
LOL!).
-Marcie
MARCIE ON JULY 28TH, 2003
Potty
Training -We started this morning... put on underwear (plus a diaper over top of
them just in case of an accident). Put him on like clockwork at 8 AM, 8:30, 9
AM... no accidents but nothing in the potty either... well just now I put him on
(9:30)... 5 seconds later he PEED on the potty!!!!! Took me TOTALLY off guard...
but HOORAY anyway! I only wish it was this easy (I know I lucked into catching
him)... just wanted to share the news!
MARCIE ON JULY 29TH,
2003
Potty Training-Things are still going pretty well here... yesterday
Hunter urinated in the potty 4 times (with 8 accidents) and went poop in the
potty 1x, with 3 accidents.
So far today, he has urinated 2 times on the
potty (with 3 accidents), and went poop on the potty 2 times (with NO BM
accidents yet today!). One of the times on the potty was even at
Target!
He doesn't have a CLUE I don't think to WHAT he's doing, but
hopefully that will come with time. For now, he's spending about 5-8 minutes on
the potty every half-hour, and isn't TOO upset about it (singing, playing his
Blue's Clues tape on the cassette player, or tickling him seem to
work the
best at distracting him).
MARCIE ON SEPTEMBER 16, 2003
Hi
everyone,
Every year, I like to write to the listserv and update everyone
on my son, Hunter. We've been members of this listserv since Hunter was 6.5
months old; well, today he is six YEARS old! Time does fly! Instead of dwelling
on everything that Hunter cannot do as a 6 year old, I instead want to focus on
what he CAN do.
At 6 years old, Hunter is very healthy (MOST of the
time--he happens to have a cold right now, though!). As of just now (I always
measure and weigh him on his birthday for his growth chart), he is 44" tall and
weighs about 48 lbs. Hunter is able to do many, many things. His diagnoses are
the following: complete ACC (diagnosed via MRI at 6.5 months of age; confirmed
via MRI at 4 years of age), autism spectrum disorder (diagnosed at 4 years of
age--fairly severe), and sensory integration dysfunction (diagnosed at 12 months
of age--MUCH improved in the past few years).
Gross Motor and
Communication skills:
Hunter is able to crawl, scoot (on his bottom), walk,
run (very clumsily, but it's a run!), walk up stairs and down stairs
independently (needs to hold onto the bannister with one hand), and climb easily
onto furniture and chairs. While he is unable to talk, Hunter is able to
communicate on a very basic level using PECS (we are transitioning from stage 2
to stage 3 of PECS right now, for those of you who use PECS). He also uses
gestures and hand-tugging to communicate very well. Even though he is not able
to expressively communicate with us, Hunter understands most of what we tell
him. We estimate his receptive language to be at a 2-3 year old level, if not
higher at times. He can follow directions and do some basic imitation.
Cognitive skills:
Hunter knows SO much! We started ABA (applied
behavior analysis) with Hunter less than a year ago, so each of these skills has
emerged in the past year. Hunter knows (receptively) all of the upper and lower
case letters of the alphabet. He knows the sounds of all of the consonants and
is learning vowel sounds. He knows his colors, numbers 1-10, shapes, and a
multitude of vocabulary words (including animals, articles of clothing,
vehicles, common household items, etc.). He can identify all of his family
members, therapists, and many close family friends by their photos. Hunter can
identify the body parts on Mr. Potato Head, and we are working on his own body
parts right now. He can respond correctly to about 15 commands, including "roll
car", "brush hair", "put in", to name just 3 of them. Hunter can throw a ball at
a target (up to 3 feet away!), kick a ball, bounce a large ball, and hit a ball
off of a tee. With minimal assistance, he can remove his shoes and socks, as
well as pull his pants down (we've almost mastered pulling them UP too!). He is
able to build a tower with 6 or more blocks. Hunter can wipe off a table with a
paper towel (and throw it away!).
Currently Hunter is adding to his
repertoire, including learning to distinguish between big and little, other
opposites (hot and cold, wet and dry), tracing a horizontal line, matching upper
case alphabet to lower case alphabet, vowel sounds, verbal imitation, more
attributes (color AND shape), imitate block towers, simple puzzles, play a
keyboard with just one finger (instead of banging with his whole hand), throw a
ball to a person, knock on the door, and various interactive and independent
play programs (since this remains a very tough area for Hunter). We are also
working on self-feeding with a spoon as well as finger-feeding (Hunter's fine
motor skills are very low for his age).
In sum, I am SOOOO proud of my
little guy! After attending preschool full time for the past 2 years (half time
the year before that) with the county in an inclusive program for children with
autism, Hunter just started kindergarten in a K-2 MH classroom in our district.
He will begin inclusion with the typical kindergarten class in the coming weeks.
He receives PT, OT, APE (all 1x/week) and Speech (2x/week individual; 1x/week
group), all through his school. Hunter also is currently getting about 10-15
hours per week of ABA (evenings and weekends)--this summer he received 30-40
hours per week of ABA.
If you want to see some photos of Hunter, check
out his website (the link is listed below). His 6 year old birthday photos will
be taken at Sears later on this week, so stay tuned for the proofs of
those!
MARCIE ON SEPTEMBER 26, 2003
Hunter started STACK
preschool 2 weeks after his 3rd birthday. STACK was not our first choice for a
school program. We sent him to Dr. Rebecca Morrison's school (then called
Children's Center for Developmental Enrichment) the summer before he was 3, and
we wanted him to ontinue attending preschool at CCDE upon turning 3 in
September. Dr. Morrison knew we'd have a fight on our hands when it came to
convincing our district to pay the cost, and told me that if they said no, to
ask about STACK as a back-up option. Of course, our district said flat-out no,
and so I brought up STACK. He was enrolled, and he attended 1/2-day preschool
through STACK for a year, then attended full-day preschool through STACk for his
2nd and 3rd years of preschool. His first and second years went very well. He
didn't DO much his first year, but we were happy to have him in a school
setting, and we hoped he was absorbing some things. His second year, he made a
lot of great progress. He learned to check his schedule and to do independent
work--two things I honestly didn't think he'd ever be able to do! I was very
excited! The work was very simple (stacking, sorting, etc.), but I was thrilled
anyway.
We started a very limited home-based ABA program during the
summer after Hunter's 2nd year of STACK. By limited, I'm talking I did programs
with him for about 30 minutes at a time 2-3 times per day for about 3
weeks...and then both he and I went back to school, so that was that.
Immediately a change was noted by his previous year's teacher (who was his
teacher again)... Hunter had changed from a very reserved, very unaware child to
a fiery, aggressive little boy! He was biting and hitting peers and adults. We
had *NEVER* seen this kind of thing at home, and he did not exhibit this
behavior during summer STACK either. After about 3-4 weeks of this occuring at
school, the behaviors started transferring to home. Things escalated in the
fall, and we had countless meetings to try to figure things out. At the same
time, we were doing some ABA at home (only about 3 hours total per week, between
myself and his consultant, after school and on weekends). Unfortunately, his
behavior change was attributed to the ABA program by his teacher. This upset me,
of course. He was doing wonderful work in ABA, and doing nothing at all in class
(except aggressing towards his peers and teachers).
We hired 3
therapists and started a true ABA program in January, and Hunter took off. He
was only getting about 15 hours per week, but it was amazing... he flew through
programs. All the while, he continued having difficulties at school. He wouldnt
work, and usually bit/hit someone at least once every few days.
Hunter
"graduated" from STACK preschool in May. We opted for him to not continue in the
STACK school-age program this fall for multiple reasons. One of the biggest ones
was definitely that we felt his needs were NOT being met. This summer we did a
more extensive ABA program (35-40 hours per week), and again he quickly mastered
most of what we put in front of him. Receptively he seems to be on the level of
most Kindergartners (as far as academic knowlege goes), which is just astounding
to us.
Hunter is now a student at Fouse Elementary in Westerville in a
K-2 MH classroom. He has a 1-on-1 aide (not one specific aide, but per his IEP
he is always with someone--either his teacher, a classroom aide, or a therapist)
in addition to receiving his therapies (PT, Speech, OT, APE). Soon he will start
some mainstream time in a typical Kindergarten classroom. While his new teacher
does indeed see aggression in Hunter, he has not been allowed to injure anyone.
Safety is the #1 priority. They have recently put his aggressive behaviors on an
extinction program, and after just 2 days they are seeing progress with the
"hands down" command (yeah!).
OK this is much longer than what I meant
for it to be... one other thing: when we started STACK, I knew next to nothing
about ABA, and Hunter didn't even have an actual diagnosis of autism... it was
just "autistic-like symptoms". He didn't get a true diagnosis till he was 4
years 2 months old (which was in his 2nd year of STACK). So, for us, at the time
STACK was honestly the best option available. While I can now say that perhaps
it's not the best option for everyone, I want to also say that I am thankful
that we did have that option available to us.
Marcie on December 28,
2003
I last wrote on Hunter's 6th birthday (9/15). He's had a good few
months. He continues to grow (up to 50 lbs. now, and is about 44-45" tall).
While Hunter is unable to talk, he is on phase III of PECS, which is a picture
exchange communication system that enables him to let us know what he wants by
selecting a picture and handing it to us. He is also quite good at
gesturing/pulling! His receptive language is quite good--he understands most
everything we say to him! We are continuing to work on pre-K skills in his home
therapy program, which is based on the methods of Applied Behavior Analysis
(ABA). He receives about 12-15 hours per week of ABA at this time--too little,
really, but with his school schedule, anything more is next to impossible!. His
newest skill learned in ABA which I love is giving a "high-five" upon request.
He loves to do it after someone scores a touchdown in football! School for
Hunter continues to go well. He attends full time, and is in a K-2 MH classroom
with partial inclusion in a typical Kindergarten classroom (he has 1-on-1 aide
support throughout the day). The Christmas holidays and time off from school are
less than desirable for Hunter (his "need for sameness" is a typical
characterisitic of children with autism), so we're trying to keep things at
least somewhat scheduled right now. Speaking of which, I need to get him changed
before he has therapy today!
Marcie on January 21,
2004
Hunter (now 6 years old) had many issues when tranferring from a
bottle to a cup (strangely, he had none whatsover going from breast to
bottle--he found bottles MUCH easier!). We started out with just a regular cup,
as he couldn't figure out how to use a sippy cup. Of course, liquid would go
everywhere. When he was about 1.5 years old or so, he started using a Tupperware
sippy cup. These are different from the "no-spill" cups that are popular today.
The Tupperware lids do not have a valve of any sorts. There is just a sippy lid
and a spout of sorts with an opening cut in it. The liquid would come out quicky
enough to satisfy Hunter, and he learned how to use it. After a good 6-12 months
(sorry, the dates are really fuzzy right now), he transferred to a Playtex
"no-spill" sippy cup. He actually has to suck to get the liquid out. To transfer
him to this cup, I simply removed the valve from the lid, so the liquid came out
just as quickly as with his Tupperware lid. It was still hard for him, as he was
stuck in his ways and wanted the Tupperware lid, but he eventually tried it and
realized it was the same. I remember the day when he finally drank from a
"no-spill" cup with the valve in place--a day of celebration, definitely! At 6+
years, he still uses this cup (or any other "no-spill" cup). I'm honestly in no
hurry to move him into a regular cup. He'd make a mess... plus the no-spill cups
are so transportable! Hunter isn't able to drink from a straw (he has VERY low
oral muscle tone), so right now the no-spill cups are the best option for us. We
go through them quickly, though... he likes to chew on the spout!
GRAMPS ON January 30, 2004
It's been 4 months since I
updated this webpage so here's what has been going on with Hunter and his life.
First, I personally have been selling the Ohio Meigs Genealogy/Picture
CD to raise some funds for Hunter ABA. You can find details on this project
at:
http://www.geocities.com/meinhartstock/meigscd.html
Even if
you don't have Genealogy Roots from this county, it has a Great Search engine
worth $25 to help search documents in your computer or files.
We've
raised around $8,000 to $9,000 this past Fall, so far, for his ABA.
Also,
back in December we collected money in front of our house for Hunter and his
ABA. It was just amazing is all I can say. For those who we weren't able to
thank one-on-one we appreciate all that was left for him. This also added over
$2,000 for his ABA.
GRAMPS ON MARCH 24, 2004
Hunter and
Marcie received word today that they will be receiving Waiver Money from the
County/State. We've waited years for this and thank all for you prayers and
support on this happy day! Again thanks to the Governor, Franklin County Mental
and Retardation center and all those resposible who made this
happen!!!
MARCIE ON APRIL 4, 2004
However, I'm also an
"old-timer", in that I've been on the listserv since April 1998 (6 years--has it
really been THAT long?!). Six years ago (almost to the day, in fact), my son
Hunter was diagnosed with ACC. He was 6.5 months old at the time. His
pediatrician suspected a neurological problem and ordered an MRI. At the time,
the only "signs" we were seeing were difficulties with gross and fine motor
skills (at 6 months, he was at a 3-4 month old level). In hindsight, there were
other "markers" (including his inability to latch on during breastfeeding as an
infant). The diagnosis from the MRI was complete agenesis of the corpus
callosum, with no other brain anomolies present.
Fast-forward to today.
Hunter is 6.5 years old. He is a very active boy who, at first glance, seems to
be a typical kid. He is able to walk and run (albeit clumsily). Most people see
Hunter and say "hi", thinking he's just a normal little boy. However, Hunter is
extremely developmentally delayed. He is completely nonverbal (although his
receptive language is quite good--more like a 3 year old, we estimate). He can't
feed himself (fine motor issues lead to this, although we're also suspicious
that he just won't do it--he does have a bit of a stubborn streak!). He has a
severe drooling problem (wears bibs that are changed 6-8 times per day). Hunter
is currently in a K-2 MH (Multiple Handicaps) classroom in a typical elementary
school, and he spends about an hour each day with a typical kindergarten class.
In addition to having the diagnosis of ACC, Hunter was diagnosed with autism
spectrum disorder when he was about 3 years old.
Despite all of the
things Hunter is unable to do, he is excelling in his in-home Applied Behavior
Analysis (ABA) therapy program. He's been receiving ABA on a consistent basis at
home since January 2003. During the school year, he gets between 14-18 hours per
week, while during the summer it's up to about 35-40 hours per week. Because of
this program, we have come to realize how much Hunter truly DOES know. He knows
his alphabet (upper AND lower case). He knows his numbers. He knows TONS of
vocabulary words (all through receptive identification). He is able to perform
many tasks that we once thought he wasn't capable of doing, all because of the
way we're teaching him. ABA therapy is a method which uses rewards to motivate
the child to succeed. Hunter has been trained to use a token-based system. He
receives a laminated piece of paper with a star on it when he completes a task.
Once he's received 5 stars, he gets his reward--watching a videotape of
PlayStation football! For tasks that have already been mastered and are being
reviewed, he usually must do 3-4 tasks before receiving one star. I never would
have believed that he would be able to function in this therapeutic environment
before we started ABA. Hunter hated the school setting, and refused to do tasks.
With ABA, he has learned how to do so much!
Hunter's program has been
financed by my parents. We pay college students to work with him and do ABA
therapy. Which brings me to our news... we received truly wonderful news a
couple of weeks ago: Hunter has finally been selected to receive a Medicaid
waiver, which means we will have money to pay for his therapists, as well as for
diapers, medications, etc. We're so excited about the prospect of receiving the
waiver! It should go into effect on 5/1/04.
MARCIE FROM APRIL 5,
2003 (JUST POSTED FROM DECEMBER)
One of Hunter's current ABA providers is
a high-school senior. Jordan joined our ABA team in late August/early September,
and has been a true asset. Hunter simply adores him (he loves all men,
especially those between the ages of 16 and 25!). Jordan is mature beyond his
years.
Below, I've cut-and-pasted an essay that Jordan wrote for one of
his college applications. I was quite touched by it, and I wanted to share it
with everyone. (By the way, Hunter's name has been changed in the essay, for
privacy purposes.)
Enjoy!
When you ask a normal high school
student the question, “So where do you work?” You expect a response like, “Oh,
at Tim Hortons”, or “at Bob Evans” or some other menial job that people normally
associate with high school students. However I am fortunate enough to be in a
position to respond differently than most high school students. To the
aforementioned question, I respond, “I am an ABA Therapist.”
Now, when I
tell people this, they generally give me a blank stare that almost demands an
explanation. So I must take them through the whole .lecture. as I am calling it.
ABA stands for Applied Behavioral Analysis. Again, more blank stares from my
listeners. Now in the most basic terms. I work with Autistic children within
their homes as part of a team whose ultimate goal is to bring the child up to a
functional level of behavior within our current society. The males I explain
this to, generally give me another blank stare, the girls, almost always respond
with that age-old female, “Awww!”
The question that inevitably follows
is, “What kind of training did you have to go through to be able to do that kind
of thing?” Zilch, zero, nada. All of my training was on the job, working with an
adorable six-year-old child who suffers from Autism. But if you spend more than
five minutes with Billy* and you will discover that the word “suffer” is quite
inaccurate.
Billy is about 44” tall, around forty-eight pounds, with red
hair and brown eyes, and most of the time he wears a grin from ear to ear. He
enjoys watching people play video games and being spun around in circles. When
he was only six and a half months old, Billy was diagnosed with a complete
absent corpus collosum(ACC). The corpus collosum is the connection between the
two halves of the brain. This diagnosis was confirmed when he was four years
old, along with a new diagnosis; severe autism spectrum disorder and sensory
integration dysfunction. He is also completely non-verbal. He can make a variety
of sounds, but he cannot string them together into words.
However, as
debilitating as those diagnoses may appear, Billy has taught me so much more
than some medical textbook could, about the value of pure unstoppable
resilience. Billy has every right to throw a temper-tantrum every five minutes
or so, he has every reason to be mad at a world he can’t understand, but
whenever things look abysmal, he grins that mischievous grin, and presses on.
During a session of ABA, autistic children must be motivated by
something more than simply the knowledge that they are learning. They don’t
understand that kind of thing. They must be working for something that they can
see, touch, smell, or taste, something that stimulates the sensory portions of
their brain. In Billy’s case, he is working for a set of stars. Once he has
earned five stars that we place a reward chart, he is permitted to watch a video
of his soon-to-be stepfather playing Madden 2002. When he gets an answer wrong,
he quite predictably is upset, and sometimes he throws a little temper tantrum,
but all we have to do is breathe the word, “football”, and no matter how angry
he is, he will sit down and finish the program.
Billy has been a force
for change in my life; he has shown me what the true essence of life is. A
smile. A smile on the rainiest of days. Billy is autistic, yes, but he enjoys
his life more than a highly educated corporate lawyer might. He is surrounded by
those people who love him and would do any and everything in the world to help
him.
If asked to sum up everything Billy has taught me in a single
sentence it would have to be this: “No matter how bleak things appear, there’s
always a new game of football right around the corner.”
* His name is not
really Billy; I have changed it for the privacy of
the
family.
GRAMPS ON JUNE 10TH, 2004
First and most important I want to thank all the contributers to the Meigs Cty, OH Genealogy/Picture CD and all who bought and support this great cause. I don't have exact figures but I think around $20,000 was raised, along with contributions for Christmas lights around $4,000 the last 2 1/2 - 3 years. Thanks isn't enough, but your thanks will be done after your lifetime has passed here on earth. Hunter was granted his Medicaid Waiver Money from the County a few months ago. This should take care of Hunter for quite a while, we hope.
MARCIE ON SEPTEMBER 14, 2004
Let me go back a bit. Hunter was diagnosed with complete ACC via an MRI in April 1997, when he was 6.5 months old. At that time, his pediatrician was seeing some slight gross-motor and fine-motor delays, and recommended that we get the MRI. The only diagnosis that resulted was the ACC (no other brain anomolies). Hunter began PT and OT at 11 months and Early Intervention classes through Easter Seals at 1 year. He began speech therapy soon after.
Fast-forward to the present. Hunter is turning 7 years old tomorrow. WOW--seven!!! I can hardly believe how quickly time has flown. Hunter's father and I joined the listserv the day after Hunter was diagnosed, after speaking on the phone with Kathy Schilmoeller. Hunter's father and I were very young (barely 19 and 20), and Hunter was a big surprise. We were so relieved to find others with children who had the same condition as Hunter.
Shortly after his 4th birthday, Hunter was diagnosed with autism spectrum disorder. We were aware that he had autistic-like symptoms since the age of 24 months, when Hunter retreated into his own little world of Blue's Clues. No longer was he interested in toys or books. It was a harsh diagnosis, as autism is a very difficult disorder to understand.
HOWEVER, all that being said, on his birthday, I like to dwell on all that my son is now able to do, rather than what he is unable to do. Because, while Hunter definitely has severe delays in all areas, he is able to do SO much!!!
At 7 years of age, Hunter is 46.5" tall and 55 lbs. (grew 2.5" and gained 7 lbs. since last year!). He is in perfect health! He has a mouth full of perfect baby teeth (no loose ones--YET!) and a head full of red hair. Hunter is able to walk, run, and has almost mastered a sort of a "skip"/hop that he only does when VERY excited! He can walk unassisted up AND down steps with or without a railing (last year he needed that railing--but not now!!!). He is able to self-feed himself using a spoon or fork with much assistance (although he's VERY lazy and would prefer his mom or grandma do it for him!), and has used a no-spill sippy cup for several years now.
Hunter can communicate fairly well using a picture-exchange communication system (PECS), where he gives us the icon for the item that he desires (most often it's "video", "TV", "remote control", or "football game"--meaning PlayStation football game!). He is very adept at getting his wants and needs across by either using PECS, handing us the item he wants, choosing the item he wants when offered a choice, or simply taking the hand of the nearest person and leading them to what he wants. Hunter is doing very well with potty training; he has 1-2 BM's a week on the potty, and will urinate at least once or more per day. He's "time-trained", meaning he isn't able to let us know he has to go--we "catch" him!
Most of Hunter's skills that he knows have been taught through his home-based ABA program (Applied Behavior Analysis), which we've been running for just about 2 years now. He gets about 15 hours a week during the school year (since he's at school full-time), and 40 hours a week during the summer months. We hire college-aged students as therapists, and train them in the methods of ABA. We were VERY fortunate this year to finally receive a Medicaid waiver, which allows us to pay for all of Hunter's therapy as well as any other care he might need (including respite), AND it covers his medical expenses--such as DIAPERS! This has been a lifesaver for our family. Hunter's maternal grandparents (my mother and father) were financing his program 100% before we received the waiver this summer. ABA is not cheap, but it's what has worked for Hunter.
Through his ABA program, he has learned his alphabet, numbers, sounds, TONS of picture vocabulary words, sight words (this is new this summer, and he's FLYING through it!), various gross and fine motor skills, etc. etc. etc. I won't enumerate it all... if you check out his website (listed at the end of my e-mail) you can see his growth during the past 2 years. I mention all of his newfound abilities!
Hunter LOVES to go swimming in the pool (ANY pool will do, but Aunt Jan's in-ground is the best!). He turned into a fish this summer (although he DRINKS more water than he blows bubbles LOL)! He also loves to watch his daddy, stepfather, and Gramps play on the PlayStation/Nintendo. His favorite games are SPORTS--especially football! Hunter also likes to be bounced on his grandparents' big trampoline. His favorite places to go are Best Buy and Magic Mountain (and, of course, anywhere with a POOL!).
This fall, Hunter started 1st grade in a typical elementary school in our district. He is in a K-2 MH classroom for most of the day, but he does get to spend 1-1.5 hours per day with his 1st grade classmates, and will soon have PE and Art with them. At school he receives speech (2x/week individual and 1x/week group), OT (1x/week), PT (1x/week) and APE (1x/week). This is his 2nd year with his current teacher/classroom, and we're happy with his placement. Previously he attended a special needs program for autistic children through the county.
We are all so proud of Hunter! Between his Grandma Dee and Gramps, his daddy, his stepmother Susan, his new stepfather Joe, and ME (his mommy), plus ALL of his extended family members, he must be one of the most loved little guys ever!
Tomorrow my baby turns 7. While he won't be too interested in opening gifts (there isn't much that he wants that he doesn't already have!), he will wake up with his usual HUGE grin on his face, and remind me why I am here--to be his mommy and give him the best life possible.
GRAMPS ON MAY 27TH 2005
Hunter is doing fine. He's looking forward to the summer with his new ABA instructors. I just uploaded 14 new pictures of Hunter from a Camcorder. Considering they came from a camcorder and stripped away from the film the quality is pretty good. Hunter just loves to swim and this year he's even more happy with the water, since he is bigger. He loves being in the pool by himself. He will walk around the whole pool when he is by himself and has the best time ever. The pictures shows that, so take time and enjoy them. Have a great Summer!
GRAMPS ON JULY 6TH 2005
Hunter is having a great summer. Loves the pool. He is going to Children's Hospital in August to arrange for a Speech Therapist. A long time coming!
MARCIE ON SEPT. 17TH, 2005
Hunter turned 8 years old on September 15th. At 8 years of age, Hunter is 49" tall and 61 lbs. (he grew 2.5" and gained 6 lbs. since last year!). He is in wonderful health! He is a redhead with a mouthful of perfect baby teeth, minus 2--he lost his first two teeth in August of this year! Hunter is able to walk and run on his own, as well as go up and down stairs. He can feed himself almost independently with a spoon (needs some help "loading" the spoon). He uses a sippy cup to drink. He occasionally will use the toilet, but for the most part is dependent on pull-ups.
Hunter is nonverbal, but he uses PECS (pictures) to communicate, as well as gestures. He continues to be taught using ABA (Applied Behavior Analysis) in a home-based program, which he does after school and on weekends, as well as 40+ hours a week during summer vacation. His current ABA team consists of long-time beloved therapists Kathy and Colleen, and his new friend Niki. We're very happy with all that he's learned through ABA, including the alphabet, numbers, sounds, TONS of picture vocabulary words, sight words (such as family members' names, numbers, etc.) various gross and fine motor skills, etc. etc. etc. I won't list it all... if you check out his website (listed at the end of my e-mail) you can see his growth due to ABA during the past 3 years.
Hunter still LOVES to go swimming in the pool, but he's gotten a bit "pooled-out" this summer. He spent most weekends in Nana's or Aunt Jan's pools. This past year (winter & spring) he took adaptive swimming lessons at the local community center, and we started these again today. He also still loves to watch his daddy, stepfather, and Gramps play football on the PlayStation/Nintendo, and enjoys going to Magic Mountain. His #1 activity right now is "putting in and taking out"... he will occupy himself for hours with a bucket and a few balls or any other type of container and small items to put in and dump out. His new little brother Joey (born 4/18/05) enjoys watching big brother's antics!
Hunter just started 2nd grade in his same class as last year, the K-2 MH classroom at Wilder Elementary. He will again spend about an hour a day with his typical peers, and also still receives speech (2x/week individual and 1x/week group), OT (1x/week), PT (1x/week) and APE (1x/week). He has a new teacher this year (his beloved Mrs. Wise retired), and things are going well so far.
Hunter is a lucky guy to have such a wonderful family, including very loving grandparents (Grandma Dee & Gramps) and FOUR proud parents (Mommy, stepdad Joe, Daddy, and stepmom Susan). Tomorrow we'll celebrate his birthday with his extended family of aunts, uncles, cousins, grandparents and great-grandma, and although he won't really care about the gifts that he receives (mostly clothes as he isn't interested toys or the like), he will treat everyone to that giant famous grin of his, and will enjoy his big piece of cake with lots of frosting! Here is a picture of him taken at Sears today--enjoy!
-Marcie
GRAMPS ON MARCH 20TH, 2007
He's doing real well right now, a month or so ago, Hunter was having seizures (about 1 a day) for a week or so. He went on medication, but the doctor says that the doze was so low that the medication didn't stop the seizures. So we have to assume they stopped on there own.
Late last year Hunter went Hi-Tech and now carries a portable MP3 player (meant for a shower) that replays his 45 minute of Football from an X-Box. This has been real good compared to his cassette players.
Late last Fall, Dee and I, took Hunter out on Pontoon Boat a few times. He loved it to say the least, I think I have some of those pictures for viewing.
School this year hasn't been good for Hunter, though he has tolerated it.
We're hoping to get Hunter in a specialized school this Fall.
Still completely Non-Verbal, though I can ususally tell what he wants most of the time through body language.
Always willing to talk about Hunter and share pictures - Simply ask!
GRAMPS ON MARCH 20TH, 2007
I added new pictures at the front of this webpage and also added 5 new pictures at the "Recent Pictures of Hunter.
GRAMPS ON AUGUST 8TH, 2008
Okay, I don't want to go through everything that happened on August 3rd, Sunday.
Hunter smashed his toe with a TV and was eventually sent to Children's Hospital in Columbus, OH.
When surgery was supposed to happen, he had a reaction to the medication (best they could tell), and stopped breathing for a short period. Took about 25 minutes to get his vitals back to normal. Marcie (his Mom), Dylan (his Dad), Susan (Step-Mom) and I were in the room during the whole thing, not fun.
They were not going to do the surgery on his toe but decided to go ahead and do it, thank God.
Dee and I went Sunday evening and he was really quite alert. He did not want his milk. I think he was still trying to figure what was going on.
He spent the night at Children's for observation. Dylan, his DAD, spent the night.
He went home on Monday afternoon.
I saw him Monday evening and you would never know anything happened to him. He was walking fine, inspite of the foot boot he was in.
On Wednesday, the 6th, he was back to normal eating and physical wise other than him clopping around on his foot.
You can see some recent pictures I just posted.
Thanks to all for the support and prayers.
Gramps
Thanks again for visiting his Webpage :)
Please come back about every month or two and keep up with his
progress. Have a great year-Gramps
I will try to keep updates on
Hunter as things progress. - Mark "Gramps" Meinhart
THIS WAS LAST UPDATED: August 8th, 2008
You can see Hunter and his friends at the websites
listed below, along with his past pictures:
Email Me