Overheard: Joseph and Camille

My mother, sister, nephew and my herd went to a petting zoo the other day. While we were there, I saw some spider monkeys and pointed them out to Joseph. The animals were being silly and so was my kid, so I threatened to toss him in with them. My sister laughed and said, "Joseph, are you a monkey? Should we put you in the with monkeys?"

"Yeah, Auna, I can take those monkeys DOWN."

***
Because my mother and I have been up to the Arch once and once is enough thankyouverymuch, my sister took Joseph and Camille up with her. When they got to the top, Joseph looked out and said, "This isn't very safe, is it?"

***
A few weeks ago, Adam called to the kids, "Children! Come here!" Camille replied, "We not childrens, Daddy. We're a HERD."

I am so kewl.

You know that blog post I did about how you can reduce your carbon footprint, even with kids? Well, I won! I totally won the contest! Alright, yeah, it's random chance not my super cool writing skillz but I still won. And I NEVER win! Yay me!

Focus on the Positive



What are your child's STRENGTHS?

I can remember being asked this question by the
Early Intervention team that would come to our
home to work with Matthew on therapies when he
was younger. Matthew is my child and he has
Agenesis of the Corpus Callosum.

One of the questions they would ask me periodically
is:

"What are some of Matthew's strengths?"

I would nearly stop in my tracks and have to shift
gears. This question was actually difficult for me
to answer because my mind was always caught up in
all of his needs and challenges and I was focused
on everything he needed help with and his therapies
and what he wasn't able to do.

I would literally have to REALLY think hard just to
come up with one or two of Matthew's strengths.

I thought it would be fun to share what our kid's
strengths are in an effort to get to know them a
little better and to help focus on what they are
good at and what they CAN do.

I invited parents in ACC support groups to share
their child's strengths and I received a collection
of wonderful stories that I am thrilled to be able
to share here with you.


My son's strengths are 1: he is amazing in an
emergency situation which is crazy since he
has low fustration tolerance in other areas
but if there is an emergency he takes action
and helps out!
2) He is funny as all get out! He can make a
total stranger smile with his sense of humor.
3) He is very creative and a fantastic actor.
4) He is loyal to the core to his friends.

My son Shiloh is 9 years old and has complete ACC.
He is an amazing artist and can draw anything he
sees a picture of without tracing at all. He loves
math and is actually working above grade level in
math. This year, in our state's standardized testing,
Shiloh actually received a medal for getting the
score of proficient with distinction on the Math
test.

He has a giving heart and is always willing to help
those in need. He packed up many of his favorite
toys to send to Haiti after the earthquake and wanted
to send them right away to the kids who may have lost
their toys.

He has just learned how to ride a two-wheel bicycle,
and is SO proud of himself. He often asks me to come
out to the drive to watch "how fast" he can go. It's
amazing that he's learned to ride a bike and we're so
excited to do family biking trips now.

Nikki is 3 and her strengths are. . . . .

1. She is consistently happy 99.9% of the time.
2. She has the BIGGEST smile in Wisconsin! :) We call it
her "Movie Star" smile.
3. She is absolutely fearless! Had her first aqua-therapy
session last Tuesday and she was ecstatic in the water!
She'd never been in a large pool and it didn't concern her
in the slightest. She was dipping her face in, splashing. . .
the whole works! :)
4. She radiates this peace and love to everyone (no other
way to explain it). People get drawn in by her and then
she's got them hooked! :)
5. She learns very quickly considering her challenges. If
you show her something, she will try to do it.

My daughter Brianna is 2 1/2 C-ACC

1. She is very good at out-running mommy and daddy.
2. Especially good at picking fights with her big sister
then making up .
3. LOVE, this little girls main strength is LOVE she
loves EVERYONE (I swear she hugs strangers in the Market
and Target lol anyone).
4. Is super sneaky at trying to crawl up the stairs
behind mommas back.
5. Learned to throw a ball more than 2ft away from her (yay).
6. She can sign about 20 American Sign Language words.
7. Brianna speaks about 8 simple words (super adorable).
8. Gives the strongest sweetest hugs.
9. Always has the strength to overcome all her health
obstacles
10. Another major strength is her self happiness (this child
can really entertain herself and loves it.
11. Strong YELL and LAUGH you can hear this boo screaming
and laughing down the street!
12. Her strength to overcome her fears (such as walking over
grass barefoot, and riding the carousel and dumbo ride at Disney) she now loves both.
13. Putting herself to bed in her crib, self comforting.
(Major plus for mommy and daddy).
14. Being the greatest sweetest sister to Hailey and daughter
to the hunk and I :)

With much love,

Her mommy.

Hello Everyone!
This is such a great posting!

Hunter is 4 yrs old and his strengths are:

He is a happy, sweet and affectionate little boy!

He is starting to go poopy on the potty and making an
effort to do it all by himself!

He is very caring and empathetic to his younger brother
and others!

He loves to play and watch sports (EVERY SPORT!)

He knows his numbers, letters and colors…..and he likes
to count and wants to know how to spell words.

He can ride his bike with training wheels.

He can get dressed by himself (most of the time)

He loves Irish/Scottish music and he really likes to
sing along.

He can turn on the Wii by himself.

He can cut paper and is working on writing.

He just accomplished getting his face wet in the pool
(yesterday)!

My child, Matthew, who has complete Agenesis of the
Corpus Callosum is very happy all the time. People
who don't even know him often comment about that.
He smiles all the time, laughs a lot everyday and
he is very social. Matthew loves to be around other
kids and watch them play.

Matthew is very good at using the computer. He is
also good at using his touch screen augmentative
communication device (DynaVox V) and he can find
anything he wants to say using memorization to find
the exact screen that has what he wants to say.

Matthew can throw and catch a beach ball and other
small, soft balls very well and he loves to play ball
with his Dad.

Matthew really likes to play with remote control cars
and can do it by himself when the remote only requires
one hand.

Matthew can ride an adaptive trike really well by himself.

Matthew loves music. He plays his casio keyboard. He is
involved in a music therapy class where he gets hands on
to different musical instruments and he has been making
music on a cello. He has actually been holding the cello
and using the bow to move back and forth across the cello
strings.

Aiden (17.5 months) can run and bend down and
pick up toys, he is great at puzzles and knows
which direction books face and pages should be
turned! He gets mad when they are upside down!
Aiden can play the keyboard... He puts one finger
down at a time, plays a chord and looks up and
stares as if he is listening very hard... Also, he
loves to throw... Everything and can throw small
objects into buckets and he sings, in rhythm, to
his favorite songs using the sound "ah"! He loves
this old man, Dinah won't you blow, twinkle twinkle...
Oh and he loves the 50s song "mr lee". Except we sing,
" mr A! And he sings in tune to the circle song by
10,000 maniacs! He loves it! Also, in the pool,
while holding him under the arms on his tummy, he
kicks his legs! Oh, one more thing, he can drink
from a straw and understands everything you say
to him!


Erika 3, is a very fast learner!! She was in a
contained classroom this year, and doesn't need
one next year :)

what a great idea

Grayden is only a year old but his strengths are:

1-make you smile at first look at him

2-reminds me how to laugh daily (he is always being silly)
which makes me laugh

3-just adores his older sister

4-says mum mum dada and baba not specific but love to
think it is

5-has almost convinced my husband to buy us a dog because
his keen interest in them

6-is sitting independently working on getting into a
sitting postion

7-lifting up on his arms wanting to move

Most of all the happiest baby in the world he truly is
a joy


Trevor is 14 1/2 yrs old.

He can ride an adult trike. He can swim underwater.
He is the friendliest teen you'll ever met. That
smile will just melt your heart. He knows most colors,
all letters, some numbers. He can write his name and
some basic information. He can work his TV/VCR. He
puts his clothes on/off independently. He can play
simple games on a computer using a mouse independently.
Excellent hearing.

Just a few of his strengths.......


Right off the top of my head, here's a list of
my child's strengths.

She has a fine sense of humor.

She can play piano, including ragtime and 7-page
sonatinas. She also is good at playing duets and
accompanying others.

She trains and shows dogs, and has reams of ribbons
and shelves of trophies to prove it. She also did
well in the past showing cats and guinea pigs.

She does nice counted cross stitch and makes beautiful
beaded snowflakes.

She's an excellent swimmer, and also kayaks and
cross-country skis.

She's something of a computer whiz, having taken
a number of classes and also maintaining Facebook,
MySpace, Dogster, and Catster pages on the web.

She knows how to download music to her computer
and iPod.

She has good taste in friends.

Her softball skills were good enough to win her a
spot on her 8th grade school team.

She's a hard-working student, with wonderful study
skills.

She's a great writer, speller, and editor.

She knows more about dog breeds than anyone I know.

She remembers everyone's phone numbers.

She's a conscientious driver.

She plays a mean game of Mancala, Scrabble, or
double solitaire.

She has always had a good eye for putting puzzles
together.

She is a great volunteer for her dog rescue group.

She had a part in every play her high school performed
(and she was the only student to do so).

She saves money (and never fails to save me when I
need to borrow some).

She knows a lot of Spanish, and did extremely well
with a year of it in college.

She has a good vocabulary.

She's kind to animals.

I feel really blessed that before Emily was born
I had been doing energy work. I do acupuncture on
animals and studied the Silva method (similar to
The Secret). Those things gave me the right mind
set to help Emily. She signed her wants & needs
beginning at 9 mo. She knew about 100 signs by the
time she was 1 1/2 yr. She walked independently by
33 mo. She traveled to Phoenix, AZ (from PA) on her
1st plan ride at 11 mo., to Hawaii at 1 1/2 yrs.,
Disneyworld at 2 & 4, Bangkok, Thailand at 3 and NYC
at 4. She met 2 of my heroes: Kim Peek & Temple Grandin.
She speaks in short sentences and understands
more than most people realize. She has an amazing
personality and draws people to her like a magnet.
She was like a rock star in Thailand. She showed
compassion for pet owners during in home euthanasias
beginning at 3 yr. She shows amazing compassion for the
animals too. She understands the concepts of many
medical procedures and can bring equipment & supplies
on request. She loves swimming & horseback riding.
She's an avid Penn State football fan - attending most
games since before she was born. She's a brilliant and
amazing girl and the only thing to limit her success is
up to choices. I call her Einstein and always remind her
how smart she is. In 21 years I expect to see her accept
her diploma from Johns Hopkins School of Medicine...
that is if that's what she wants. Our kids have limitless
potential. Don't ever let anyone tell you otherwise.

My son, Alex, 13 years old, who has complete Agenesis
of the Corpus Callosum is very happy most of the time.

Alex is very good at using the computer & playing video
games. Alex was 1 yr. old by the time he showed interest
in the computer. I think he just loves all kind of
“screens”.

Alex can throw and catch any kind of balls. He is in a
swim & bowling team with special Olympics. He is a very
good swimmer. His PE coach tells us that he is a good
athlete; participates in all the sports the class offers.

He participated with his school team in a high jump
competition district wide. His final jump was 4’5” I
think.

Alex can ride a 2 wheeler, since he was 10 yrs old.

Alex loves music. Any kind of music. When he was a
little baby I use to calm him down with lullaby’s &
classical music. Now he loves to listen to his church
CD’s and he sings along with them. Alex was in the
choir group at Church. Now, he just likes to attend
the summer choir group and special singing occasions
during mass.

My son, Jon, has the following STRENGTHS.

1. good lookin
2. Sexy bod -- 5'5" , thin
3. likes to run -- will escape if doors are not locked.
4. uses a fork and spoon to feed himself
5. is happy most of the time -- smiles a lot -- hums happy tunes, and laughs out loud at funny things.
6. can ride an adult tricycle (with adult supervision)
7. Most of the time obedient to instruction
8. Assists in dressing himself
9. enjoys musical toys, audio and CD cassette players (some toys not age-appropriate for him but satisfying never-the-less.)
10. can spend hours focusing on musical toys while multi-tasking with the VCR and watching TV at the same time.
11. Can do the following tasks at his office either independently or with supervision: stuffing envelopes, sealing envelopes, putting labels on envelopes, stapling, typing addresses on envelopes with a programmable typewriter (wheelwriter 5), shredding paper. He is a bulk mail specialist and gets paid for his work.
12. He assists with setting the table at mealtime and clearing the table with supervision.
13 He has good eye-hand coordination at catching and throwing balls. (and other objects)
14. He can swim independently in both shallow and deep water
15. He can "work out" at the YMCA on cardio equipment with supervision.
16. He uses sign language -- about 300 words.
17. He can make his wants known with gestures and sign language.
18. He assists with some household chores.
19. He can ride a horse with a lead rope and loves it. He has excellent balance.
20. He has participated in Special Olympics in the past.
21. He has pretty good finger dexterity and can easily flip light and fan switches.
22. He is able to swallow pills with no difficulty.
23. He has excellent rhythm and possibly perfect pitch.



My son (Kenny) has ACC, he is 4 years old and his
strengths amaze me everyday. He is very talkative
always friendly (never meets a stranger). He loves
playing with other children and for the most part
is very happy. He tries to do everything himself
and does not appear to be afraid of anything. He
is very very loving and always worries about me
(his mom) and his family. Kenny's learning ability
is always growing and surprises me constantly and
he loves singing songs. His favorite is Going out
with his Boots on, and he is always singing parts
to some song that he likes or makes it into what
he wants it to say.Music is his outlet and when he
gets frustrated music helps him. He is normal for
the most part and he is my blessing in disguise.


  • My son Jess loves music and is happiest when he is
    controlling the CD player like a DJ and singing or
    dancing along to songs. When he was learning to
    speak, he was only able to say a portion of each
    word. But music was one of the first he felt he
    needed to say. We speak mostly Spanish at home
    so I can still remember Jess excitedly saying "Ca"
    for "mus-i-ca.".
  • Jess also has a fantastic memory. He loves to play
    a memory game with his huge box of sports cards.
    We cover up the players name and he tells us who it
    is. He has hundreds of cards (baseball, football,
    soccer and some basketball) and he is rarely ever
    wrong. Actually, we can cover up a major portion of
    the picture on the card and he still knows who it is...
  • Jess has always liked books. He enjoys going to the
    library and is always ready to sit down and read with
    someone. Even by himself, he reads aloud (he doesn't
    know how to read silently) or copies the text into
    his computer.
  • He loves to be with people. And although he still
    hasn't developed a social form of conversation (he
    mostly asks questions or keeps repeating something
    that is important to him), he loves to talk.


  • Noah's strengths:

    He can be a very loving boy who tells his Mommy he
    loves her many times a day. He is concerned about
    his family and their well being. He is already
    showing signs of concern for his sister who is 7 wks
    pregnant, and taking care of the baby. He has always
    been very active, and his gross motor has been at or
    above age appropriate. He loves sports, especially
    basketball. He can even finger roll . He road his bike
    a total of 6 miles yesterday with his Dad. Which I was
    amazed by, I did not know if he could do it. He loves
    to swing on our swing set, and swim in our pool.
    Although he may have his limitations, I expect greatness
    from him just as I do my other 3 kids. Greatness being
    whatever they chose to do in life. To do it well and be
    happy with themselves and their life.

    I've been thinking on this and I have come up
    with a list of Logans strengths. (4 1/2 years old)

    -He can mimic silly voices really well
    -Logan can get the TV and DVD player going by himself
    (I'm still teaching my parents, haha)
    -He can throw an object with speed and precision
    95% of the time
    -He is willing to try anything at least once
    -Logan gives the best hugs and has such a sweet smile
    -Logan is very empathetic towards others

    Thank you all for sharing your childs strengths,
    this was a good idea!


    I look forward to hearing more about all of the things
    that each one of your kids CAN do and I welcome your
    input to be added here if you would like to share.

    You can click on "comments" and give your input or
    you can e-mail me directly: hope@aracnet.com and I
    will gladly include what you have to share about your
    child's strengths to the top of this page.

    What are YOUR child's strengths?

    Adoption: A Journey of Faith

    I am reposting today, because I was reading through a post I wrote last October in our adoption blog. Adoption is indeed a Journey of Faith. It has been hard, it has been frustrating, it has been emotional (an understatement) but it has been good!

    Our lives would be a lot easier without Nina. We would be more comfortable, and have more freedom as a family. But was it worth it? Absolutely!

    God has stepped in, and He has provided. It is a journey that has changed us.

    So here is my post from last October, "Adoption: A Journey of Faith"

    God doesn't call us to be comfortable. He calls us to trust Him so completely that we are unafraid to put ourselves in situations where we will be in trouble if He doesn't come through.” Francis Chan


    I recently came across this quote, as I read it, the tears started to flow, this is where we are at, this is our life.


    Andy and I have really been battling discouragement the last couple of weeks. Adoption is an emotional roller coaster. We find ourselves in a situation where we will be in trouble if God does not come through, and while we wait, it is hard not to start questioning the outcome.


    I sat across the desk from our County Assessor dealing with adoption documents and couldn't stop crying. Not only was it embarrassing, but it made me look inside and realize I had to deal with all the feelings inside of me. It was later that day that I first read the quote from Francis Chan. God was sending me a message.


    When we decided to commit to adopt Nina, we knew from the beginning that this would be a journey of Faith. The eyes of the world might look at us and think that we are crazy. The sacrifices are many, and the timing might seem wrong. But this is what Faith means, this is what stepping out in obedience looks like. We will not question, but we will obey.


    I would lie if I said that we don’t have questions, because we do.

    “Can we really do this financially?”

    “Am I willing to be gone from my girls for seven weeks?”

    “Will it be a lonely Christmas with only Nina and myself?”

    “Will Andy be okay playing “single parent” for a month?”

    “Will our girls cope okay when we are both gone?”

    “Will Nina fit into our family?”

    “Will Ellie feel resentful having two sisters with Special Needs?”

    “How will I handle being on my own in a foreign country where I don’t speak the language for so long.”

    “Are we alone in this?”


    Please know, many of these thoughts are not from God, we know that, but when emotions are raw, it is easy to entertain those thoughts and take comments or conversations negatively, even though they never were. It is more of a reflection of our lack of trust as we are so close to the goal, and so much in this process is out of our hands. As a matter of fact, it is because we are so close that our emotions run high as all the knots and bolts seem to still be scattered around us and we are not sure where they fit yet.


    We knew from the beginning that there would be sacrifices, and we accepted them. We took our cue from Jesus and His sacrifice for us. He adopted us into His family, we are His beloved children and there was no price or time constrictions that would stop Him from getting us. And so we will do the same, trusting that He will provide.


    Where God leads, He provides, and so we trust. This is our journey of Faith.

    Quick Takes Friday... er Saturday

    1
    This morning my husband fished one of my contacts out of the drain. My stopper doesn't plug and I knew it was a matter of time before this happened. I'm blind as a stupid bat without my contacts and I HATE wearing my glasses. I am so, so thankful he managed to do this or I would be having a meltdown!

    2
    As payback, I fished a bottle of milk out from under to couch. It wasn't totally full but it wasn't empty either. Nor was it, um, new.

    3
    I also fished not one, not two but THREE packages of cheesy peanut butter crackers out of Higgins' mouth. I know he got one from Georgie. I took the rest of the packages away from Georgie but somehow he got a second. I put Georgie in his booster, locked the cabniet and finished making lunch. Somehow, without moving, he got a THIRD. Sneaky dog!

    4
    We are going swimming today. I'd better not fish a kid out from the pool!

    Why Having Kids is Like Being in College

    I was a gooood girl in college and studied hard and got (mostly) all A's so I never went to a frat party. I swear! Ask the people who knew me when!

    Therefore, I couldn't exactly rip off this blog post but I can tell you how being a parent is like being in college again:

    1. You can study REALLY HARD for the final, only to have the professor change the test at the last minute;
    2. You routinely pull all nighters;
    3. There's an off chance someone is going to be screaming in the hall at 3 am;
    4. Coffee. Nuff said;
    5. You become obsessed with breasts, bras and finding the perfect one;
    6. You are constantly trying to get someone in or out of your bed;
    7. You find your keys in the box of beer;*
    8. Even if you're up all night puking, you have to get up and work the next day, no questions;
    9. You find food in random places;
    10. You know the names and locations of all the 24 hour fast food restaurants, Wal-Marts and drug stores for late night necessities.

    *This is a true story, I swear! I have my mother as a witness!

    Swimsuits are Like Haircuts

    It doesn't matter what they look like in the picture, they will not look the same on you!

    Yes, today, for the first time this summer I took Ellie to the public pool, which means I had to wear a swimsuit. Not my favorite thing to do. I mean, what woman...let me try again, what MOM likes to wear a swimsuit?

    And when you have small children, it is not just modesty you have to worry about, but you have to stand in front of a mirror and bend, squat, and lean in unnatural ways to ensure that no body part or hidden area will peek out to say hi. Because let's face it, when you have small children you do end up bending, squatting, and leaning in unusual ways. Either chasing a kid, saving them from going under water, or having them hold on to you for dear life!

    So after today and the wide array of styles, I was left longing for the swimsuits of old times. Those beautiful little dresses that were appropriate and covered everything that needed to be covered.
    I mean, why not?

    And how, how did we go from little dresses to something that covers even less than underwear?

    Maybe I am on to something, maybe I should start a new swimsuit company that targets moms. Then we can all wear cute little dresses that compliment our body and will for sure cover all the stretch marks and lose skin that quite frankly need to be covered.

    Botox Time!

    Nina now has 4 round band-aids on her legs where she received her Botox injections. She seems pretty proud of them, just like any kid, and makes sure to point them out.

    The entire experience was so smooth. The doctor was there with an intern and he went through the procedure again. This is what we know: Botox is just a temporary fix, and you take full advantage of loosened muscles to do stretches and break into the AFO's. He said in 3 to 6 months, the effects will start to wear off and we will have to do it all over again.

    This time Nina got some shots on her calf muscles next time it will be her hips.

    I had explained to Nina what was going to happen. I did not want her to be surprised by 4 injections to her legs. She was nervous, as I told her it would probably hurt a little bit, but that it would help her to walk.

    As the doctor explained this to Nina again, she got sad and was about to cry. Then she looked up at him and with the sweetest little voice said... "But then Nina can dance?"

    Talk about a sweet moment! A little girl who dreams of dancing with her sisters.

    So the doctor says, "Yeah sure, maybe someday."

    What? What kind of answer is that? How can he miss this?

    "Did you hear what she said?" I asked. "This is a sweet moment and you cannot miss it." I continued. "This is a little girl who was an orphan not too long ago, who was neglected and now thrives in a family. Her world is full of potential and possibility and here she is sharing with you the dream she has to someday dance with her sisters. Isn't this sweet?"

    I then looked back to the other doctor. "Isn't this sweet?"

    We are all guilty of allowing special moments to become routine. So much so that we miss them. However, I was not going to let the moment pass without these two men realizing that this was much more than just a Botox injection. And they did, they both smiled and really thought about Nina's words, about the meaning behind the question and the dreams of this little girl who cannot even stand without help.

    "Yes, it is really sweet." The doctor agreed, smiled, and somehow saw Nina for Nina, not just one more patient.

    Nina cried a little bit, but once we were done she was happy!

    So now we are stretching a lot more and hoping to feel the effects of the Botox soon!

    On a different note, while Nina was telling Andy what happened, she said something like, "And they did not tie Nina down, mommy holds Nina, and then mommy carry Nina and kiss her, and no tying!" Makes you wonder all that took place, doesn't it?

    Some might say that she is lucky to have us, that we are a blessing to her. However, we are lucky to have her. And I cannot wait for the day when our Nina stands in the middle of the room and dances, because on that day, we will be lucky to have her, and to witness a dream come true! What a day that will be!

    Cerebral Palsy and Botox

    Cerebral Palsy is still new to us. I feel like when Nichole was 5 months old I knew a lot about Down syndrome, but now that Nina has been with us for 5 months I still feel pretty lost in my knowledge of Cerebral Palsy.

    Apart from adoption, the biggest hurdle for us has been her mobility issues. The first time we saw a physical therapist we were told they expected her to be doing worse since Nina had never seen a therapist before, while at the same time, our therapist had never worked with a child that was as hard and tight as Nina. Sometimes trying to stretch her is like trying to bend a block of wood by just pushing on it.

    Even now, after 5 months, stretching her requires a lot of strength. There are times I cannot even flex her feet with my hands. I place her foot on my shoulder and lean into her so I can get her foot to flex.

    Nina's Cerebral Palsy is called diplegia (the first picture in the diagram below.) And while her arms and hands are somewhat affected, she has full use of them and this rarely affect her movement. The times where her arms and hands are affected are when Nina is scared, nervous, or angry. During these "episodes" all her body is affected and as I have described it before, she turns into a wooden board and has no balance or control of her body. At these times she aquires a "curled" position. However, this seems to be more of a behavioral issue or a coping mechanism.
    (If I am not using the correct terminology here, please correct me! As I said, I am just learning about CP.)



    We have a great walker and we have great AFO's (leg braces.) The problem is that no matter how often we stretch, her legs and feet are still very tight and curled. Her AFO's work for a while, but after a period of time, her feet will shift and regardless of the many straps, the heels are up and we have to take the AFO's off in order to reposition her feet. Something that requires time as it takes a while to be able to stretch her feet to a 90 degree angle and we both can only do it so many times a day. As you can see, her heels are really "up there."


    In light of this, we are going to try Botox. Botox has been used successfully in individuals with Cerebral Palsy when injected in the affected areas.

    Cerebral palsy is a result of brain injury. What Botox does, is "numb" the nerves that signal the brain to contract. Because of the injury, the brain is not able to signal back telling the legs to relax. Once the nerves are "numb" there is no signaling to the brain. Does that makes sense? If it does not, then welcome to my understanding of this! I told you, I am just learning!

    Needless to say, we are hoping that the Botox injections will help Nina. We have explained to her that it might hurt a little but it will help her heels touch the ground. "Like Ellie and Nichole?" she asked.

    But Nina is a smart little girl, she asked one more thing, "Nina walk?"

    We hope so, we hope that this will be a step forward towards achieving some independent mobility. We are well aware that walking independently might be a few years down the road, but we also know that she is capable of moving around with her walker, and eventually maybe just by using crutches.

    Nina wants to walk like her sisters. Personally, I cannot wait to see all three of them dance together, all three girls with their unique abilities.

    Crafty Caterpillars

    Once again, Ellie, Nina and I got crafty!

    (If you wonder what Nichole does during these time, she is either watching her Barbie show while singing and dancing, or she is watching a Signing Time show, occasionally running to me to yell the word and do the sign.)

    We used paint, styrofoam balls, pipe cleaners, toothpicks, glue, googly eyes, and tiny pom poms.

    We cut a couple of balls in half, and then used toothpicks to secure the balls that we were painting.







    Once they were all done, we had to let them dry. I did help Nina quite a bit, and Ellie only when she would ask me to get the bottom of the balls.


    Once the balls were dry we cut pipe cleaners in half. We folded one of the pieces in half and rolled the top to make the antenna, then we just jabbed it on top of one of the balls. We then put on the googly eyes and used our glue to paste the pom pom nose. This was hard for Nina, but she almost got the eyes all on her own just with a little guidance. Do remember, crafts are so new to her, before we had her, I don't think she had even held a crayon before! Now she is using paintbrushes!


    We used the toothpicks to connect the balls. We broke the toothpicks so only a little piece was left to each ball. I did that for both girls as I was afraid that they would poke their fingers with the sharp ends of the toothpicks.
    Then we inserted the other small pieces of pipe cleaners to make the legs.


    And voila! The caterpillars were ready to crawl on our awesome green carpet!
    And as a final picture, here is Ellie, showing the watch she made with play-doh.

    Happy crafting everyone!

    The Best Dad

    If you ask Ellie who she is going to marry she will tell you she will marry her daddy. He is her prince charming. Actually, all three of my girls adore their daddy, he is their favorite! Yes, sometimes I do feel a little jealous, but, the truth is he is more patient, and a lot stronger! He can swing them, throw them up in the air, and twirl them better than mom!

    He is loving and caring. Everyday, he tells his girls that he loves them, and every day he tells them that they are beautiful.

    He is the best daddy in the world! He is involved in their lives and he considers these years precious! I am so lucky he chose me! He is the best partner and my best friend.

    All four girls in his house absolutely adore him!

    He is an extraordinary man, and an extraordinary daddy!



    Triggering Control

    It happened again today.

    I had a dream while napping with Cole, a dream about the NICU. It was raining, because it was always raining while we were at the NICU. I was standing outside the doors and people were coming in and out, chatting happily. It was busy, busy because it was Father's Day. I had a plastic bag in my hand, filled with bags for breastmilk, freenugeek and preemie sleepers. I was looking for someone, someone I had to give this bag too.

    The nurses buzzed me into the unit and I saw the women who needed the supplies. I smiled at her and walked forward... only to wake up.

    I hardly ever dream of the NICU. I remember one vivid dream, the day Georgie came off the vent. I dreamt they put him back on it; I dreamt of fear.

    Mostly, I deal with flashbacks; sudden, vivid memories that overwhelm me and make me feel like I've been punched in the gut. They can come on suddenly, without warning, at the most random of times. I've had flashbacks to his baptism while teaching classes to small children. I've thought of his emergency transport simply because I've driven past the hospital where he and Cole were born. Those small ones, I can deal with. Walking into the hospital on the anniversary of his due date to bring Christmas goodies to the parents of current NICU SuperBabies? That left me curled up on the couch sobbing so hard I couldn't speak, clinging to Georgie as if he was my life vest and I was drowning.

    In a sense, I was.

    I've been doing so well since Cole was born. I haven't had any flashbacks, any trauma, any anxieties. I was  lulled into a false sense of security. I know I wasn't healed; I will never be fully healed. But better? Yes, I was doing better.

    ***
    A friend posted on Facebook about a baby currently in the NICU who needs breastmilk. He has NEC and human milk would be much, much easier on his gut than formula. I have milk I am willing to donate and after speaking to my friend and the baby's mother, I was able to find people who were willing to give their milk to this little guy. Currently, we have over 80 ounces waiting for him.

    When I talked to my friend on the phone, she filled me in on how this SuperBaby in Training was doing. He was born at a much younger gestation than George and has more complications than my son. Yet, while talking to her, I was brought clearly back to the NICU, to standing in Georgie's room. The cold, hard dread formed in my stomach and I remembered seeing a cute little puppy outfit hanging in our laundry room, a surprise from my mother. I remembered refusing to wash it because I was afraid my son, my big strong baby who "only" had RDS, would not come home. I remembered the darkness of his room, the noise of the monitors, the longing to simply touch him. I remembered holding him while he had an apnea spell. I remembered talking to a nurse and suddenly hearing alarm bells go off. A baby was coding. I wonder often if that baby survived.

    When I got off the phone, I was able to shake off the feeling, the memories. Or so I thought.

    The more I deny it, the more it is there. The longer I refuse to think about it, the stronger it becomes, until it overrides my subconscious and I am haunted in my dreams.

    ****
    I want to think the PTSD will go away. I want to think I will one day I will no longer have flashbacks. I want to think I never again be overwhelmed by memories.

    I know better.

    The times between flashbacks, between dreams, between down-in-my-gut pain that brings me to my knees will become longer. Weeks and months will go by. It will take stronger triggers, more of them... but they will always be there, lurking, waiting for that moment of weakness.

    At the end of the day, I can drown in my memories, let them control me... or I can acknowledge them, grab them by the horns and roll with them. They can control me or I can control them.I can chose what will rule: me or the PTSD?

    ***

    I had a horrible dream this afternoon. I dreamt of the NICU and a mother and baby who need help. I dreamt of alarms and breastfeeding and tiny blue sleepers. It was a bit unexpected and weird and not comforting. It was part of my day but not all of it. It made me stop and think and remember.

    But it didn't control my day.

    Father to a Son With Special Needs

    Tomorrow, there will be many fathers of children with special needs that will be celebrated. Many of these men used to be ordinary fathers, but because of their children, they have become extraordinary men.

    God has used these children in their lives in powerful ways. Although the world has labeled many of their children as less than perfect, worthless, or limited, these men have embraced the path they now travel and they have been transformed. And when God changes these father's lives, others take notice.

    Their children have not limited them, their children have made them stronger, more like Christ.






    Quick Takes Friday

    ONE

    16 years ago today, Adam and I met at Mt Vernon in Virgina. He was on a family vacation, using up airline miles. I was visiting from South Korea, on a "vacation" that was really a way to get us out of the country, as Noth Korea was close to attacking South Korea.

    Hey, North Korea? I owe you! Thanks!

    TWO

    16 years later, we have this:

    THREE

    Joseph has a baseball game tomorrow. Kindergarten baseball is the most adorable AND hysterical game out there. At one hour and fifteen minutes, it is perfect for my attention span.

    FOUR

    Nothing beats a toddler in a bucket hat. The most peaceful picture of summer...


    Believe...





    When you have a baby or child who has

    Agenesis of the Corpus Callosum you want

    to know what to expect and how or if it

    will affect them. Unfortunately, because

    ACC has such a broad range of effects,

    there is no way to tell for certain or to

    predict what you can expect for your child.



    Not knowing what to expect can be one of the

    most difficult things to deal with emotionally

    and can also be overwhelming at times...

    especially if your child is making progress

    very slowly and is slow to meet their milestones.



    I can raise my hand high and personally

    attest to this because my own child, Matthew,

    who has Agenesis of the Corpus Callosum, is

    developmentally delayed and he took a long

    time to learn new things and to meet

    milestones.



    One of the sections of information that was

    included in the ACC Reading and Comprehension

    document dealt with this very subject in

    quite an inspirational way. I think it's worth

    repeating as a separate post because I believe

    that the information that other parents share,

    who have a child with ACC, is heartfelt and

    encouraging and I hope that you will too.



    UNIQUE WAYS OF LEARNING - Amazing

    Examples:




    When you think that a child with ACC isn't

    learning...think again. They very well could

    be taking in all kinds of information with

    little to no progress showing outwardly.

    Then one day it just appears out of the blue

    much to everyone's surprise...even the child's

    parents.



    First parent writes:




    "As a baby Abbie didn't babble. She was a very

    serious baby. At about age 2 she went from

    virtually no speech, apart from a few single

    words and their varied mutations, to almost

    full sentences. She'd obviously been listening

    and observing."



    Second parent writes:




    "Lexie never babbled either. No mamamama or

    bababababa. Also, she never said uh-oh like

    all other babies. Same goes with what does a

    cow say...."mooooo" Nope! She, too, was a very

    serious baby. At age 2 she had virtually NO words.

    Then suddenly, somewhere after 2, she began talking.

    I would not say full sentences over night, but to

    us it was drastic!"



    Third parent writes:




    "Ryan started speech therapy at 15 months old.

    For three long months, once a week, his therapist

    would go over the signs 'more, all done, open'

    and maybe 3 or 4 other ones. He couldn't care

    less! He never seemed to be looking at our

    hands (of course I kept trying to teach him)...

    he had lots of fun playing with her, but didn't

    pick up on the sign thing AT ALL!



    At 18 months we were on vacation in Ireland,

    when his daddy realized he forgot the video

    camera in the car. So he went to get it.

    While he was gone, I was tickling and picking

    up Ryan for about five minutes. Then I stopped.

    Then we looked at each other and he signed "more".

    I screamed 'what'? And he did it over and over

    and over again. Just in time for the video camera!

    By the end of our two week vacation, he was signing

    more, all done and open. The amazing part is that

    it really seemed like he never paid attn to the

    therapist and to me for the three months we tried

    to teach him those signs!



    Luckily he got kicked out of speech therapy at

    three yrs old when he said his first 10 word

    sentence. Speech has never been an issue again."



    Fourth parent writes:




    "My child was not dry by herself at school until

    first grade, and even then had some accidents. I

    know some schools are icky about wearing Pullups.

    She was in Pullups until she was about 11.

    She also was not dry at night until 13.



    And she started learning to drive at 15.5, but only

    got good enough to pass the tests after years of

    practice, both written and behind the wheel, at 20,

    a fairly long learning curve.



    She got her permit at 15.5, then took drivers' ed,

    which was very hard. She took the written tests

    for the class over and over again until she passed,

    but her driving was very nervous, and her drivers'

    ed instructor never passed her on it. She drove

    with us quite a lot, but not with much confidence.

    It helped when we got a smaller car, as she feels

    more confident in that one than the minivan

    or--heaven forbid--the pickup. But her class for

    students with disabilities at the community college

    did a lot of work on preparing for the written

    (actually computer) part of the driving test.

    They worked on it one whole quarter. They also

    used the practice tests a lot of states have online.

    I'm pretty sure that intense practice in that class

    is what gave her the knowledge to finally pass it,

    on her second attempt. She took the actual tests

    for her license when she was 20, and passed both

    the written (computer) and driving parts of the

    test, each on her second try. Until she actually

    did it, I never thought she would be able to.

    We were in denial that it would ever be possible

    right up until she actually had it in her hand.



    Now she has wheels! She drives the 30 miles each

    way to school almost every day. No sweat!"



    I shared a story about my own child, Matthew,

    with another parent recently:




    "I had worked with him for one whole year trying

    to teach him how to say the word "bye bye". We flew

    to Hawaii and were waiting for our connecting flight

    to Maui. My husband went outside for something and

    out of the clear blue tropical sky I heard Matthew

    say "buh bye" and I nearly did a little dance...the

    kind of I can't believe he just SAID it dance. My

    husband was gone and couldn't hear this wonderful

    new first word that our SEVEN year old child just

    said. I grabbed my cell phone and called my mom

    (as Matthew was still saying "buh bye"..."buh bye")

    and I got her answering machine. I put the phone

    up to Matthew's mouth and he SAID "buh bye" a few

    times. My mom heard it later and kept it on her

    answering machine for years.



    While Matthew is still non-verbal with only a

    handful of words...I continue to help him with

    speech because he makes a lot of sounds and is

    trying hard to put simple words together even

    though he doesn't know he's doing it. I hear him

    sometimes out of the blue say a word while he is

    watching TV. For example, he saw a baby on TV and

    said "bay-bee" clear as day without any problem.

    I will never give up on him talking and will

    continue to work with him and believe in all of

    the things that he is capable of doing no matter

    how old he is or what anyone else thinks."



    Fifth parent writes:




    "Parker started reading in kindergarten, much

    to our surprise. Nobody even knew he could

    until his special-ed class had returned from

    a field trip to a pumpkin farm. They were

    sitting in circle time reading the kids names

    that were written on the bottom of the pumpkins.

    Well Parker started reading all the kids names,

    mind you he didn’t really start talking until

    age 5. The teachers were shocked and so they

    went and got some flash cards to see if he was

    reading or had just memorized the names. We

    found out he had about 75 words, some of them

    very odd like goat. I don’t even know where

    he had ever seen that word. He didn’t like

    me reading to him when he was little, but he

    LOVED the close captioning on the TV. I guess

    that’s where he learned it all!"



    Newspaper Article: Finding 'the keys to Matthew'




    In 1998 a newspaper article was written by

    Meredith Goad titled: Finding 'the keys to Matthew'

    The article is based on an interview with Gary and

    Kathy Schilmoeller and their son, Matthew, who has ACC.

    He was 22 years old at the time of the interview.



    Finding 'the Keys to Matthew'



    The interview reveals surprising and interesting

    information about Matthew and his abilities and also

    explains how ACC affects him.



    Recently I shared my thoughts with another

    parent:




    "I have come to realize that even in those

    --what seems to be little or no progress times--they

    are working hard and learning in their own way,

    making connections and the results of all that

    'silent' learning appear one day out of the blue

    after what seemed like the longest dry spell.

    Finally, a rainbow!"



    Never Underestimate What a Child With ACC is

    Capable of Learning:








    Always keep the door open to what a child with ACC

    can do and learn. I speak from my own experience

    as the mom of a child who has ACC. He beat the

    textbook odds and took his first steps at the age

    of 7 years among many other things. He continues

    to amaze me all the time. I am not alone in this

    revelation.



    Parent of child with ACC

    [who read a book at age 10 for the first time]

    writes:




    "I cried the first time Noah read for an hour by

    himself. It sounded terrible to the normal mom

    (he was very choppy), but to me it was beautiful."



    This same parent also wrote:




    "Now [at 11 years old] he is at a 3rd grade level

    in 5th grade. He is still not very fluent. I

    was told he may never read by his last teacher."



    Parent of 16 year old child with ACC writes:




    "My son William had a list of things (an entire

    page long) we were told he "would never do." REALLY?

    He was 3 years old when we received this list from

    our "doctor". At 3, he spoke 5 words that were

    understandable (mama, dada, jojo, baba, & more).

    His speech was defined as "largely unintelligible

    sentences" for *MANY* years. Meaning, we were

    the only ones who truly understood him....that

    was from age *3* to age ?? (sorry I lost track...

    but it was a LONG time).



    Well, let me tell you what a difference 13 years

    of advocating for speech services can make...I

    CANNOT keep him quiet now...he pretty much NEVER

    shuts up (and I say that with TOTAL LOVE in my heart)

    and he is *completely* *understandable*. He talks

    "a mile a minute!" There is NO misunderstanding

    him now!! He is even described by his teachers as

    very polite and social. He has no problems with

    his socialization skills.



    Oh yeah one more thing, about that list we received

    when William was 3 years old...I'm elated to say,

    he does everything on that list and much more, with

    ONE exception....he still cannot read, but he will

    (I have Faith)...and as GOD is my witness, if it is

    the *VERY* last thing we teach him...HE WILL READ."



    What do you think? Please go ahead and add your

    own comments.












    A "first" Father's Day for now-adoptive dad

    This is the title for our local newspaper article. I wish I had a link so you could go and read the story, but there is not. So instead, I scanned the article. All you have to do is click on the picture and it should take you to another screen with a larger image.

    Happy Father's Day to all adoptive dads out there!



    Photos by Sara Stewart


    Speech Progress

    Nichole is 2 years and 8 months old. Compared to her typical peers, Nichole's speech is delayed. She is not able to communicate well and we are going through a tough time where Nichole gets very frustrated when we don't understand her or she cannot tell us what is in her mind. I would be very frustrated too.

    From all the therapy we do, speech therapy is by far the most important one in our list of priorities. I don't mind if she is not great with her handwriting, or if she jumps a little different. However, I really want her to be able to communicate clearly with others. Her speech will determine how other people perceive her, we know this, and so we work hard!

    Yesterday I realized for the first time that we were making some progress as we had a short exchange driving back from PT and OT therapy.

    Nichole: MOOOOOOM!
    Me: Yes Nichole
    Nichole: Chipssss
    Me: Okay. Ellie, can you hand Nichole her chips please?
    Ellie gave Nichole her bag of chips.
    Me: Nichole, what do you say?
    Nichole: Tenk you

    I smiled. We had just had a conversation, a successful one!

    So I want to show you some of Nichole's progress. Today as we practiced our fine motor skills, she was on a roll and not being shy of the camera.

    Warning: The content of the following videos (just like the one from the previous post) will make you "awwww," smile, and want to squeeze her!

    First you will see Nichole talking. She repeats some words after me or signs them. She also has some words that I "translate" for her. When Andy walked in, she was very interested to show him her piggy bank abilities.

    In this following video, we were going through the Signing Time! flashcards. You will see her in action. If you listen closely, she tries to say the words as well as sign them. She really does fantastic with her signs, and I keep going until she wants to stop. She communicates greatly through signs and has started to put two signs together.

    So if you missed it, make sure you check out the post from earlier today, just click here!

    Fine Motor Skills Fun Play

    The great thing about practicing fine motor skills with Nichole, or with any child, is that a lot of the fun things kids like to do, require fine motor skills. Coloring, playing dolls, brushing hair, dressing the baby, or playing with your piggy bank. These are all great opportunities for children to learn how to use their little hands.

    Children with Down syndrome tend to have a harder time with their fine motor skills, so we try to chose toys, games, and activities that encourage Nichole's hands to work. It also helps that Ellie loves these activities and Nina and Nichole will do anything their big sister is doing. They adore Ellie!

    All three of my girls love to play with money and put it in a piggy bank. Actually, Ellie likes to count "her money" while Nina and Nichole think it is great fun to just put it in the piggy.

    Today we took turns, and Nichole was showing off for us. She was so proud of herself she actually let me take her picture! Lately she does not like her picture taken, or she won't smile for the camera.

    (Please ignore the dirty face, we had just had some lunch)



    Her super awesome pincer grasp!
    And here she is in action.
    Warning: Watching this video will make you smile.