What should I ask Donna Thomson?



















Some of you read my blog What is a life well lived?

It's about Donna Thomson's new book (above) where she recounts life raising her son Nicholas, now 22, who has severe cerebral palsy.

Thomson introduces us to the Capability Approach, a model developed by economist Amartya Sen. This approach defines a good life as one in which a person has the greatest freedom to choose what they do within a given set of circumstances, especially those involving adversity.

In this model, Nicholas' life playing a computer game, taking an online course or enjoying the company of his attendants from the comfort of his bed -- where he experiences the least pain -- is, indeed, freedom.

"...it is part of our job as people who love someone who is very dependent to redefine happiness and achievement," Thomson writes.

I'm excited to be interviewing Thomson -- who lives in London with husband James Wright, Nicholas and daughter Natalie. Wright is the High Commissioner for Canada in the UK.

What should I ask Donna Thomson?

You can read more about her and The Four Walls of My Freedom in this Globe and Mail interview: Disability writer Donna Thomson's clear-eyed look at the value of a life.

We'll publish the interview in the June print issue of BLOOM magazine.

So, please, post your questions! Thanks! Louise

Nichole gets a First haircut too!

Everyone in our family has a cold right now. For most of us it means just a little runny nose. For Nichole, it means a runny nose and her eyes get "funky" like Ellie likes to say. The goober mess her runny nose made on her hair, along with her sucking on it had me wanting to get it cut for a while. Since we got Nina's hair cut (and I got one myself) I must have been in the  new do mood.

This morning I decided that I could cut her hair if she was very still (since she has little hair). She really did sit still. I figured I would be cutting the curls off (which I was sad, but I had to cut her hair at some point in her life! Well, I am happy to say that the curls are still there (more like big waves) however, I am not sure that I did such a  great job because I only know to cut straight hair! Good thing is that hair grows!

So here are some pictures, and Nichole did not want any pictures taken! So this is the best I could do!



Word wall















A few years ago Ben chose the colours black and orange for his room. We painted one of the walls with a 'chalkboard black' but never ended up using the chalk. I was thinking about making a word wall with bristol board, but then I remembered the ready black wall upstairs. Voila!

I want it to be Tuesday

I am toodling around the Internet again, searching for something that doesn't exsist. I want a mother's necklace, but I don't know what kind. I have two- one with four little charms on it, 3 boys anda  girl, their bellies bearing the birthstones of my children. I have a silver necklace with a mother holding her baby inside a larger heart. I wanted just the small charm of the mother and child- the big heart isn't really me- but Adam couldn't find just the charm. I could, on the net, but he got my present at the last minute. Silly man!

I want something that clearly shows us, our lovely four children, and the cause dear to us, prematurity. I see lots of little hand crafted disks with tiny feet on them- perfect if Georgie had been a traditional preemie or micropreemie. But he wasn't. He was big and his main problem was his lungs. "Tiny" doesn't really define our preemie jounrey.

I don't want a puple charm or awareness ribbion.

There's no one quote or Bible verse that describes us. The only one I can think of is from the Magnificant- My soul proclaims the greatness of the Lord- and that seems to belong to Cole more than all of us.

I want something that, on closer inspection, reveals how our lives have been touched and changed by 9 days in the NICU.

And then I realized why, now, I am Googling. Why, now, I am flipping through Etsy.

You see, I want it to be Tuesday. The week hinges on Tuesday. On Tuesday, Georgie has an eye exam with a dr who works with preemies. It's not on purpose that he is seeing a preemie doctor. At the practice I go to, the only drs who see the kids under school age are also the ones who work with preemies.

I'm worried.

I'm worried that they will find something wrong with his eyes, that my sweet tot's green eyes will be covered with glasses, even though I think littles in glasses are adorable. I'm worried that something went wrong in the hospital, that his vent settings were too high, or wrong, and his eyes have been damaged. I'm worried that we missed something, some cue, that we should have picked up on sooner.

Logically, I know he was on a vent for a short amount of time. I know his oxygen settings were low and he was only on them for a week. I know normal, average preemies of 35 gestation don't normally have problems with their eyes. I know that any problem HE may have is genetic and has nothing to do with his little "Hey! I should come 5 weeks early!" stunt.

I don't think of Georgie as a preemie anymore. The "35 weeks" has become an after thought, part of him but not defining him. It's his birth story, not his life story. It changed us forever and I firmly believe it gave us Cole and it will forever be a defining moment in our lives. Yet, it just... is.

I look at his long lashes, clear green blue eyes and ruffle his blond hair. I look at him carefully and wonder what he sees. Can he see? When he stands close to the TV, is he trying to see the screen or does he really think he can touch Perry if he gets close enough? Can he see the WotWots or does he just recongize the music? Does he just want to be carried down the stairs or does he really fear falling? Can he see the pages of the books or is he just being independent and wants to read them on his own?

Snow and ice are coming to our area. I'm worried that it will cancel Tuesday's appointment and I will have to wait longer for answers.

I want it to be Tuesday. I want to know if my Puddin can see, what he sees. I want the stress, the worry, the anxiety to go away.

I want it to be Tuesday.

I want to know.

Happy Birthday, Princess!

The Pretty Pink Princess turns FIVE on Thursday! How has it been five years since I had my baby girl? Wasn't it, like, yesterday she was a little pink bundle of bald goodness?


Goo-goo eyes at her grandparent's house!


She's still little and loves pink (and purple!) but definatly is not a baby anymore! Her life goal, it seems, is to catch up with Joseph. She is dying to go to kindergarten and was heart broken when we told her that even though she is five, she won't start kindy until August.

She is constantly saying, "When I am a grown up, I can...." or "When I get bigger, will I...." The morning of her birthday, she told me she just can't be five and must still be four since she wasn't any bigger that morning!

We celebrated the big 5! by bringing cupcakes with neon pink frosting to her class the day before the big day. (Neither one of us had any idea the frosting would be THAT PINK when we made it!) I came in to read a story to her class. The next day, I made her toast with pink sprinkles and the CGS teachers made a fuss over her. We met up with friends at the mall and they treated her to a ride on a merry go round. She was a doll holding hands with their little boy... although she did point out the VS store to him!

(In our defense, I have some of their clothes and I wear the underwear... she likes the boxes because they are pink! But ACK!)

That night, we had tacos with her grandparents and she got a GIANT stuffed dog to add to our Stuffed Animal Breeding Program, earrings and a gift card to get her AG dolls' ears pierced, hair care items for said doll and assorted small toys. She was thrilled with them all and even loved her slightly deformed choclated cake with more neon icing on it.

(Memo to self: Cake should be made with a mixer, not by hand with a wisk.)

Ah, our big, strong willed, wirl of a girl. We love you!


Perry, the Speech Therapy Platypus

Before Joseph came along, I would have been happy to be a TV-free home. To some degree, I still would like that. The constant drone of a TV, the stimulation constantly flowing to my brain and the NOISE! are enough to drive me batty. I'm a chatterbox who likes her peace and quiet, something that is hard to come by with four kids. Add the TV noise into the mix and I want to pull my brain out of my ears and chuck it at Dora.

(Dora and her cousin Diego are banned in my house. They annoy the crap out of me, far more than normal kids' programming.)

By the end of the day, I have created a NO KIDS' TV rule. I ban the HUB, HUB BUB and Disney XD in favor of shows that we all like and can stand. Some of them are even kids shows, but rockin' 1980s old school shows, like Rainbow Brite and He-man and She-Ra.

Excuse me, I feel the sudden urge for a side ponytail and leg warmers.

The exception to all this, generally, is the Disney show Phineaus and Ferb. Everyone knows the P and the F, so I won't bore you with details. I will say that this is perhaps Georgie's fave show ev-ah, right up there with Thomas. With this in mind, his uncle gave him a stuffed Perry for Christmas. He LOVES it!


Of COURSE, being loyal viewers of the show, we have to ask Georgie on a constant basis, "Hey Georgie! Where's Perry?"

At first, he would look confused. As time went on, he would laugh at us and then indicated that he wanted Perry to make noise. After a few weeks, he finally said, "DERE!" when we said, "Where's Perry?"

Dere! Perry is dere! HE HAS A WORD BACK!

I swear, "dere" was his breaking point. Shortly after getting his Perry, Georgie came out of his shell. We've heard "Ma ba na" (more ba [milk] now), dogdog and "GeeGee" (Gee for my mother, Grams). He interacts with more people than just us. He clearly remembered my parents when they came to visit for Camille's birthday and became very attached to my mother. He loves, loves his speech therapist (the person, not just the platypus!) and calls her "DeeDee." And imagine my surprise (and tears!) when he willingly went on the marry go round with his godmother! He sees her often but was still wary of her (since she is not a member of TheHerd and all) until last week.

And then! He walked into the church nursery! Willingly! I didn't have to drag him in or leave him crying, hoping I didn't get a phone call that he wasn't calming down. He walked in, waved good bye and wasn't crying when I walked by the room to leave. He did the same thing at the nursery in Bible Study. He was a little more reluctant to go in, but played happily and ran to give me a big hug when I picked him up.

I hadn't realized how "in his shell" he had been until he broke free from it. Georgie had been in his own little PuddinPie world until now. The ability to communicate has opened up the world to him. Instead of mostly ignoring his peers, or grabbing from them, he does try and play and interact. Yeah, he still grabs, fights, pinchs and hits because he is mostly non-verbal AND two but he's getting there. He knows PEOPLE and wants to be with PEOPLE.

We've even heard some two word phrases- "baby ba!" when I was nursing Cole and "pee pee ni-ni" (pee pee night night). He said the latter when he crawled into bed nakey and later took me by the hand and dragged me into the bathroom, pointing at the potty! Yay!  Maybe potty training is close by!

We still have some concerns. He babbles now (yay!) and speaks some, but his words are mostly beginning sounds, like "ba" for bottle or "ma" for more. Dogdog, Daddy, Mommy, mememe and baby are his only real words. He stands very close to the TV and practically has a panic attack if you ask him to walk down steps or stairs. He can slide down but will NOT stand UP and walk down. We're getting his eyes checked soon.

Georgie PuddinPie, we love you and can't wait to complain that you never stop talking!


Nina had her First Real Haircut!

Today Nina got to have her first real haircut! When she was at the orphanage, she got her hair chopped pretty often. I don't know if she ever got to have hair cover her ears. I am also not sure who decided on the style or length. My guess is that whoever did it was not a hairdresser, and it was just a lot easier to cut the kid's hair that have to worry about washing or brushing very often.

We have been growing out Nina's hair for a year! Her hair has not grown very fast, and it was beginning to look very stringy and unhealthy, but we finally had some length to work with. So today, Nina got her first real haircut. And we assured her, that getting her hair cut did not mean she would look like a boy, and it would be really cute.

She was wiggly, but our hair dresser is fantastic!

First stop...bangs! Nina has struggled to gain weight, and her body does not seem to absorb nutrients very well. A few months ago we began to give the girls Juice Plus+ and I feel like it has made a difference. We finally began to see baby hair growing in places where her hair had been scarce. Her forehead had so many baby hairs that it made sense to get bangs, and I thought she would look so cute with bangs. I do love them, and Ellie thought they were the best part of Nina's haircut.
Isn't it cute? We got rid of all the uneven layers, and we were able to match the line where she had cut her hair a while back.

 Okay Nina, now smile at the camera!
 She was more willing to smile once we got home and she got her glasses on. If you pay close attention, you can see that she got her bifocal lenses. I think she is adjusting to those pretty well.


And don't forget to enter to win a free book!

Don't forget to sign up for summer camp!

We just printed this poster with tips on how to look for summer camps for children with disabilities in Ontario. Because these camps fill up so quickly, it's important to do your search now! Here's the copy below. Louise

LOOK

• Start early – many camps fill up by February

• Use the camp search engine

• Attend a local camp fair, such as the Camps Expo in Toronto

• Ask friends/family for ideas

• Check brochures in Holland Bloorview's Family Resource Centre or at your community centre.

TALK

• Ask your child about their interests

• Read camp brochures together

• Does your child want to

Have fun

Make friends

Do new activities

Experience nature?

• Will the camp support your child’s interests and special needs?

REACH OUT

• Call the camp director or integration specialist to discuss your child’s needs

• Many camps and community centres have inclusion policies

• The camp may help arrange for a 1:1 support worker for your child, or you can hire a worker through the CHAP program

• Speak to the camp director about staff experience with children with special needs, and staff-to-camper
ratios.

FUND

• Some camps offer subsidies or can apply for funding on your behalf. Speak to the camp director

• Municipal parks and recreation departments offer camp subsidies for children in financial need

• Funding sources are listed in our Family Resource Centre or talk to your social worker.

REGISTER

• Check deadlines

• Ask to visit the camp, or to have staff meet your child at home

• Submit your application, including emergency contacts and all information that will help staff
better understand your child.

An inspiring voice

I met an amazing young woman called Irene Tran in 2007 (right). She was an inpatient here for six months after a ruptured brain aneurysm took her ability to speak, walk and read. You can read about her in this Role Model column we did: The journey from "whatchamacallit". Irene reads the BLOOM blog and sent me a very inspiring message this morning about a school she's attended since her brain injury. She was following my story about Ben and wanted us to know about this innovative program. Thank you Irene! Louise

Mary Ward C.S.S., located in Scarborough, Ont., is not a conventional school. Mary Ward is often known for its unique and very academic program. It is a self-directed school, which means that on a typical day, students make their own timetable and decide what they need to work on on a particular day, with the advice of a Teacher Advisor (similar to a homeroom teacher). A student usually has the same Teacher Advisor for their entire high school career. The program would take forever to explain, but I want to talk more about the special-ed program.

Mary Ward also has a rather extensive special-education department, which includes a team for the students who have physical/developmental/intellectual disabilities and multiple exceptionalities. I never really fit into any of these programs, but because of the intense support I needed early on, I was placed in this group. I have worked closely with this group of students and staff for the past four years in some way. I had a lot of challenges and frustration finding a program to fit my needs, but with a lot of self-advocacy, and support from others, I have made it work and have been doing well. This setting has been ideal for me because it offers a lot of flexibility and it allowed me to work at my own pace. It allowed me to regain many of the skills I lost as a result of my injury. I strongly believe that I was in an ideal setting, because I think that if I was to have gone to a "typical" high school, I wouldn't have been able to do academic/applied level work initially, and would have been stuck and likely in classes for students with developmental disabilities, and wouldn't have been able to regain as much.

Why this might be ideal for Ben, is because it will allow Ben to work at his level. A course is made up of 18 units (typically students take 6-8 courses a year), and for students in the special-ed program, if needed, work one on one, or in a small group with an EA on the academic work (work can be modified to a student's level of understanding), and also have weekly numeracy, literacy, and life skills classes as well. The students in their senior year also all do co-op placements, and they try to find placements suited to their skills and interests. Mary Ward is also known for their great integration of typically developing students with students who have disabilities. My description of the program is very basic, and if you want to know more, please let me know and I'll be happy to explain in better detail.

Louise, I truly wish you and Ben all the best in your search! My thoughts and prayers are with you, and I hope that whatever happens works out for you!

Potty Training...Mommy

Nichole is doing really well with potty training. No, really, she is. I think the one that is having a hard time with this is...me! I think she is more ready than I am to work hard at this, so I need to deal with the fact that we are going to be cleaning up accidents here for a while.

Nichole had been telling us when she had to go potty right before we began this process. This is why we knew she was ready to begin. I don't know if she was telling us as she felt it come, before, or right after. We simply just changed her diaper. Number 2 was different (because it takes her a long time to get it out, one advantage of low muscle tone I suppose) so I was getting her to go in the toilet if I got to her in time.

We began this process, I just sat her on the potty when I changed her diaper. Almost every time she would go, so we knew she knew that when you sit on the potty, you tinkle. However, her diaper was still wet between changes.

Sometimes, if she wets her diaper, she has figured out how to take it off. She will throw it away on her own and then let's me know "potty." So I think she is definitely feeling the wet diaper and not liking it. This led me to believe the "Cool alert" diapers would be a good idea. You know, those diapers that are supposed to get really cold when you go potty to increase the sensation. They worked with Ellie for a couple of weeks.

We tried it today...and it did not even face her! So we can scratch that idea!

I then let her go without a diaper, which has never worked in the past. She came to me and said "potty" I asked her if she wanted to go to Melmo, and she ran straight to Melmo. I then noticed that her night shirt was wet. I thought she had just told me that she had gone potty already. What is my surprise but to see that Melmo had some potty in it! Nichole had to go potty, she sat on Melmo, and she just did not know how to pull her pajamas up. Now isn't that exciting!

I though to myself, "She is getting this, and the no diaper idea is working!"

Well, you get some, and you miss some I suppose. There was a nice wet spot in the middle of the room later on, and she did not even acknowledge the fact that she had an accident. Oh well. We are still going to do this!

And this mommy is ready to potty train a little rascal!

Ethics in the NICU

This is a fascinating article brought to my attention by Barb Farlow, who we interviewed in For the love of Annie.

The role of a pediatric ethics committee in the newborn intensive care unit is published in the Journal of Perinatology this month and looks at ethical issues related to parent authority and best interest of the child. A couple of cases are presented, including one of an infant with Trisomy 13 who needs heart surgery. Historically, this type of surgery wouldn't be performed because Trisomy 13 is associated with early infant mortality. The author notes, however, that early death may be in part because efforts are not made to save these children.

Jan. 26 update















Ben began some language, memory and other testing with a psychologist on Monday.

My hope is that it will show that he's capable of learning academics at his own pace. “I have already seen evidence that he can do academic work in the true sense of the word, even though it is obviously nowhere near a high-school level,” the psychologist told me.

We hope to have an IPRC to look at other possible school placements in late February. However, through my meetings with the school and board I’m not confident there will be many, if any, options.

I spoke to the parent of another student in Ben’s class and she had identical concerns. “But there aren’t any alternatives!” she said. This mom is a high-powered accountant. It made me feel better to know that I wasn’t the only one struggling to get my son an education.

And it got me thinking about who advocates for students who aren’t following the standard curriculum, to ensure that expectations are high. Who decides that the focus will be life skills and stops academic learning? Why is there no government-approved curriculum as there is for typical children? It seems the curriculum ends up being what the teacher or school want to teach, with no mechanism for accountability. What say do parents have in what is taught?

On an unrelated note, Disability Scoop is an excellent online resource for news about intellectual disability. Inside the World of Siblings is a great Disability Scoop interview with Don Meyer, director of the Sibling Support Project.

And on the topic of siblings, here’s an interesting blog by Tim Gort on Hopeful Parents: Siblings have their own special needs too.Tim has three daughters, two of whom have cerebral palsy.

And another sibling post from Ellen at Love that Max: Her brother’s keeper.

This professor of narrative medicine looks at Masculinity and Disability on Downtown Abbey, which runs on Masterpiece Theatre.

Here’s an interview with a psychiatrist about Autism and Holidays on the New York Times’ Well blog.

And finally, a heartbreaking story about a mom who became disabled due to medical error at the birth of her triplets. She has waited to see them for four-and-a-half years because her husband argues that seeing her would damage them: Disabled mom battles for visitation.

Book Review and Giveaway- The Charlatan's Boy

by
Jonathan Rogers


Grady has no last name, he does not know where he came from and he has no mama and no pa. All he has is Floyd, a huckster who is a liar and a fraud. For as long as Grady can remember, he has been traveling with Floyd all over Corenwald, putting on a Feechie act where he gets to be "The Wild Man of the Feechiefen Swamp!" Grady, having nothing to hold on to, comes to believe this character to be his true identity. He is a he-feechie, alive and in the flesh. But the people of Corenwald no longer believe in Feechies  and Floyd and Grady must find new trades. Grady's heart is broken as he is told he is not a real Feechie, but only the Ugliest Boy in the world. An idea that births a new act, but when another boy is found to be uglier than Grady, a new trade most be found, and Floyd and Grady find themselves in the Phrenologist trade. Yet, Grady cannot forget the old days.  Neither can Floyd forget the money they made with the Feechie act. Together, Floyd and Grady set to create another Great Feechie Scare. Floyd, merely using the ugly boy for his profit, while Grady longs to relieve the days where he had an identity, and he knew who he was.

I  enjoyed this book. From the beginning, my heart was drawn to Grady. He longs to know who he is and where he came from. As an adoptive mother, Grady's heart speaks to me. He wants to be loved, he wants to know where he comes from, who he is, and wishing that he had a friend, someone who cared for him. Grady's likable character is well established from the beginning, and his personality and voice are consistent and strong throughout the book.

Floyd and Grady's adventures as they travel from town to town putting on their Fechie act, along with the other various performances, are fun and entertaining. These are sprinkled with Grady's longings of love and friendship, and you get a good, light hearted read.

While it was not a page turner, I recommend this as a fun read.

If you want to read the first few chapters, you can visit the Waterbrook Multnomah webiste. There you can purchase the book if you get hooked!

You can also read chapter 1 and 2 here.

Do you want this book?

Well, here is the deal, Stumbo Family Story is having a giveaway!

This is how you can enter. Just leave me a comment and tell what your favorite fiction book is. For an additional chance to win, go to my book review on the Multnomah website and rank my review, then come back here and leave a second comment.
Also remember to leave your contact infromation so I can contact you if you win!

This entry will be open until January 31 at midnight, then I will use a random generator to select the winner!
(US residents only)


If you don't win, here are a couple other places places where you can buy the book: amazon or Christian books. It is also available as an e-book.
I recieved this book for free from Waterbrook Multnomah Publising Group  for my review.

Check it out!

I'm back over at NPN writing about "Being a Mommy in the Real World".

Grab a cup of coffee and read some tips and tricks for navigating the sticky world of parenting. From well-meaning comments ("You know how to make him sleep at night, right?") to unwanted advice, find some new ways to turn the heat off of the parenting debates.

And leave a comments with your own tips! We love feedback!

ACC and Moms-To-Be #8 Story



I was recently contacted by the mom of a little
boy who has Agenesis of the Corpus Callosum who
expressed her desire to tell her own Mom-to-Be
Story about receiving the diagnosis of ACC when
she was pregnant.

This Mom shared something with me....in her own
words:


"I am very passionate about helping others and encouraging
others through those hard times."

Thank you very much, Brandy. I am so grateful to
you for your passion to help others, for your
willingness to reach out to people in need and for
allowing me to post your ACC Pregnancy Story.



Written by Brandy:

My pregnancy with this child (child #2 for me) was
never really normal. It started off rough as I had
started to bleed early on during my pregnancy. I
felt in my heart that I was losing my baby. However,
my baby was a fighter and wasn't going anywhere!
After about the 10 week mark, I was taken off bedrest
and was able to resume normal activities. At 20 weeks,
I went in for my ultrasound. Like many others, I had
no idea that they actually checked for so much during
those ultrasounds! He was given a good checkup other
than he was a little on the small side and they wanted
to do a repeat ultrasound at 28 weeks just to check
his growth. Thinking everything would be normal
(this was my second child and my first child had no
issues at all), my husband went on his trip out of town
for work, leaving me to go alone for the ultrasound.
This was the first and only ultrasound that he had
ever missed with either of my kids. Everything
seemed ok during my appointment. The ultrasound
tech never said anything was unusual or made any
faces. She printed off my pictures and told me
that he was growing on schedule. She then told me
that she was going to put me in a room so that the
doctor could talk to me. My stomach sank. I knew
that this was not normal! The ultrasound showed
that his brain ventricles were enlarged. I had never
heard of ventricles in the brain! I asked the doctor
what all that meant. He was very upbeat and honest
with me. He wanted me to go to a maternal-fetal
doctor to be followed. I got an appointment the next
day. On my way home after hearing the news, I was
pretty numb. I didn't know what any of this meant.
I didn't cry, which was VERY unusual for me. I even
went to the grocery store on the way home. It
wasn't until I got home and called my best friend
that I broke down. My husband flew home the next
morning so that he could go to the specialist with
me.

The specialist basically told me that same thing.
Hydrocephalus and he would need a shunt. I did
lots of research on hydrocephalus. Some days I
was worried and other days I wasn't. At 36 weeks,
I was sent to the children's hospital for a fetal
MRI. A big pregnant woman in a little bitty
MRI tube = MISERY! Anyway, the results came
back that he had Agenesis of the Corpus Callosum
(ACC) and not hydrocephalus. His ventricles were
enlarged but stable and not changing. I was told
that his ventricles weren't necessarily enlarged,
they had just taken on a different shape since
there was no corpus callosum.

I opted to have a c-section to deliver him.
My first delivery was vaginal and did not go
well at all. I also wanted to schedule his
delivery so that we could have all necessary
doctors on stand-by just in case we needed them.
The delivery turned out to go smooth. He did have
to go to the Neonatal Intensive Care Unit (NICU)
for a night to monitor his breathing (not related
to the ACC) but was allowed to spend the rest of
our stay with me in my room. While in the NICU,
they did an ultrasound of his head and it confirmed
the ACC diagnosis. He also had an EEG which came
back normal. He was having a little difficulty
eating and that prolonged our hospital stay
by a day, but he caught on like a champ
(and he is now the best eating child I have
ever seen!). The neurologist visited him in
the NICU and then came to see me. He gave me
the best piece of advice regarding the ACC.
He told me to learn all I can about ACC and then
to forget it - to treat him like I would treat
any other child. My son is now 3.5 years old
and he has taught me so much in his short life.

He first started showing physical delays when
he was a few months old. He did not sit until
he was nearly 8 months, crawled at 11 months,
and walked at 13.5 months. He had been in
physical therapy through our Early Intervention
program since he was 6 months old. He was
discharged from physical therapy around 14 months
since he was really thriving in that area once
he started to walk. From 14 months until
2.5 years he was in a little occupational
therapy through the Early Intervention program,
however he really needed speech more than
anything. We fought and struggled with our
Early Intervention program because they just
could not provide what he really needed.

Finally at 2.5 years old, we got into a
private therapy clinic and had a wonderful
speech therapist who made leaps and bounds
with him. At 3 he graduated out of the
Early Intervention and we enrolled him in the
special needs preschool through our school
system. I was very hesitant to make that move.
In fact, I had pretty much decided that I was
not going to send him to school at the age
of 3. However, I have a wonderful friend who
had been down this road with her son who had
similiar issues. She pushed me to enroll him
in the special needs school. Boy am I glad
I did!

Until Logan was about 2.5, he was nonverbal.
He would say "mama" and "dada" on occassion,
but basically nonverbal. He made huge
improvements with his speech therapist, but
the special needs school has REALLY made him
bloom. Just thinking of his three angel
teachers makes me tear up. He now has a
vocabulary of about 150-200 words and is
doing two to three words sentences, though
many of his words aren't really clear
(but we can understand him!)

He has a sweet personality. He is pretty
quiet in a group and is very well behaved,
but once he is at home, he really opens up!
His behavior is pretty much perfect,
especially for a 3 year old. But we are
having one big issue and that is he screams
when his dad is at home. He loves his dad
and wants to always be with him and play with
him, but for some reason he just screams.
When he is just with me (or anyone else) he
does not do the screaming. As for Logan's
"screaming"... it is the most high pitch noise
you can imagine to come out of a three year old.
If it happens in a store (ie. Walmart) you can
definitely hear him on the completely opposite
end of the store. It literally makes me feel
like my head is rattling. I can't really say
what prompts the screaming. It seems to me that
he wants his dad to do everything with him
(or for him is more like it!) and wants his dad
to do it right that second. I was talking with
my mom today, who babysits Logan sometimes. She
said it is just like a Jekyll/Hyde transformation.
Logan is about as perfectly behaved as a 3 year
old can be with her (and everyone except his dad).
Then when his dad walks in the room, he just starts
with this high pitch, stop-in-your-tracks scream.
I'm beginning to think it is a mixture of language
barrier frustration, being spoiled by his dad,
and just being a stubborn and impatient three
year old. It has by far been the must frustrating
bump we have faced on this road.

I love my son to pieces. He has taught me so
many lessons about life. If I had the chance,
I would not change him for the world!


3-year-old Logan


There are many different stories and outcomes of
ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.


I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

What is a life well lived?






















Some of you remember Walker’s Gift, a post about a talk given by Ian Brown, author of The Boy in the Moon. Brown's son Walker has a rare genetic condition and significant disabilities. Brown talked about how doctors never addressed the central question of the meaning of Walker’s life:

"It wasn't the keeping him alive or happy or from hitting himself that was most hard, it was that I didn't know what the meaning of his life was. Or whether he had an inner life. The most important question of all was about his soul. I don't know how you measure that in the medical world. That matters to the parent and it matters to the disabled child."

My son Ben is pictured above. I think many of us wrestle with the ‘why’ of our children's lives when their gifts don’t fall within conventional measures of success. And more importantly, with how we can ensure our child has a rich, and not diminished, life.

I’ve been reading The Four Walls of My Freedom, a memoir by Donna Thomson about raising her son Nicholas, now 21, who has cerebral palsy and is physically-dependent.

Thomson introduces us to the Capability Approach, a model developed by economist and philosopher Amartya Sen as a way of looking at poverty. But Thomson applies it to life with disability.

“The key idea of the Capability Approach is that social arrangements should expand people’s capabilities, or their freedom to promote whatever activities and lifestyle they value,” Thomson writes. “Sen argues that the central concern of having a decent and valued life worth living is that of freedom. It is not money and it is not 'accomplishments.' The approach examines the range of possibilities for human flourishing within a given set of circumstances, especially circumstances involving adversity.”

Thomson shares how she aggressively pushed for surgeries for her son to relieve unbearable pain from a dislocated hip that kept him in bed. “I wasn’t ready to give up on an active future for Nick,” she says. When a second surgery doesn’t yield the hoped-for results, she has to acknowledge that she expected too much from doctors.

“Now, I no longer hope for a future full of active verbs for Nicholas. I have accepted that he chooses to remain in bed almost all of his days because that is where he is most comfortable. Nicholas’ capabilities of being pain free and maintaining his dignity through choice and self-direction merge in his lifestyle nowadays. The German film director Werner Herzog once made a film about people with disabilities whom, he said, ‘experience the world on a very reduced level, but very richly.’ The riches that Nicholas enjoys are his friendships with his caregivers and with his friends and family.”

Thomson talks about how human worth is bestowed through relationships. “The essential worth of another is received love.”

Sen would describe Nicholas' decision to stay in bed as an adaptive preference – a choice one makes in circumstances of deprivation when other choices aren’t possible. “Nicholas exercises his adaptive preferences by saying that he is no longer interested in events and activities outside of his bedroom," Thomson writes. "But Nicholas prefers to view this as anything but tragic. There may be an important game on television that he doesn’t want to miss, or a new computer game to try out. He chooses a series of interesting activities to pursue each day within the small sphere of his room, and he is happy.”

This drives home our responsibility to look to our children – not to common cultural perceptions – as to what brings happiness. “…it is part of our job as people who love someone who is very dependent to redefine happiness and achievement,” Thomson says.

She notes that it’s challenging to measure the extent to which someone has a life they value. She shares an index she used to determine wellbeing in her family. Each member rates themselves in areas such as empowered to act; self-direction; harmony with nature; spiritual state; inner peace; play and fun; meaningful work; education and learning; beauty and creativity; community support; friendship; family relationships; and four elements of health.

Although Nick doesn’t speak, he seems to communicate well through a voice device. I’m not sure how an index like this would be used when the person can’t express their thoughts well.

Thomson goes on to call for a public/private partnership in supporting our most vulnerable citizens. “A fair trajectory for my caring years should not include me changing Nicholas’ diapers when he is 35 and I am 70.”

I haven’t finished reading the book, and Thomson’s suggestions for public policy changes that will give people with disabilities freedom to choose the lives they wish are yet to come. For example, I skipped ahead and noted that Thomson suggests parents of children with severe disabilities should be offered a residential placement at age 15. If the parents choose to keep their child at home, they should be entitled to the equivalent care costs to be used in the family home.

I am enjoying this book because I like the idea that we must redefine our notions of happiness and achievement to fit the needs, desires and values of our children. I’m still a bit fuzzy on how to determine what my son values most when communication is a challenge, and how to make it a reality given some of the big-picture barriers.

Thoughts?

My name is Matt

Matt Kamaratakis wrote this blog in response to Tekeal's blog Growing up. Thanks Matt! Louise

We have never had the pleasure of correspondence or simply talking as one human being to another. For, I am not a parent, but do have a disability, and can relate to every word in your post – even the ones which we have locked away in our hearts.

Our journey for peace and self-acceptance is as life itself: “never ending and always changing.”

For instance, I recently became an uncle. My nephew (above) is four-and-a-half-months old – and I know that babies usually roll over at the age of five or six months. Hence, I find myself saying: “Hey Buddy (this is my nickname for him). Are you going to do the ‘roll’ for your uncle, because we’ve had enough of disability in this house. You need to crawl, walk, run around, ride a bike, and get dirty.”

I've spent most of my life trying to hide or outrun my cerebral palsy, until a friend wrote to me and said, “My cancer is no more a part of me than your disability is a part of you; it's something we live with, but it doesn't define us.” Her name was Alexandra and you would have loved her.

I've failed more than anyone ever should, and like you, have struggled with wordless prejudice, but possess the wisdom to learn from my mistakes and the will to try again.

Due to life experience and disability, I have become a man that I hope most people will want to know – a man of intelligence, compassion, understanding, acceptance, strength and love. I pray that the woman of my dreams will look beyond my wheelchair and crutches to see this in me. This is who I am, and who I will always be.

I never thought that I would be writing or commenting on the BLOOM blog, as I did not wish to be an advocate for people with disabilities, but a voice in which everyone could find a home.

My disability will forever force me to think and operate beyond the narrow vision of normalcy, but it has been the most common people – those like Louise, John Kooy (my friend and orthotist at Holland Bloorview), and all of you – who have helped me embrace a growing sea of humanity which is infinitely evolving. Everyone is different, special, and equal.

My name is Matt and I am truly honored to meet you.

IT

When my mom was here, we took the kids to the local mall. It was MLK Day so it was pretty busy. We braved the crowds, though, and met up with her friend for lunch, went to the American Girl store and did some shopping.

Towards the end of our day, we went to the play area and Joseph ran into a friend. He and Camille were happy, as she loves playing with S's older sister. I like S's mother very much, so I walked over to say hello to K and her friend.

K actually expressed surprise that I was at the mall. When I looked at her, she said, "I don't know how you get out of the house with four kids!"

(Uh, throw them in the car and go?)

I made a joking comment about having back up- my mother.

But the conversation went on and on. She said she remembered when I told her I was pregnant and Georgie was still a baby. (Hey, I remember that too!) She kept asking me how I do IT, whatever IT is. I tried to deflect her but the questions kept coming.

I get that alot, the "I don't know how you do it" or "How DO you DO IT?" comments. Yes, I could play dumb and give a smart arse answer like, "Well, the last time I was top..." Typically, though, all the smart answers fly out of my head.

And I have to wonder what those people are thinking when they ask me stuff. First of all, who tells a random stranger (or non close friend) that they are brave for having "so many" kids. Most of my friends have 3 children- 4 is only one more than 3! And just what is IT anyway?

No matter what IT is, how could I not do IT? Is IT getting the kids up in the morning? Fed? Dressed? Clean? Well, I'd better figure out a way to do all those things, right? Because who else is going to do them? My maid? Right.

We do IT, whatever IT is, because this is our life that we picked.

So, let's clear up some ideas. I don't do it all. I don't have a perfectly clean house. What I do have  is a large calendar that allows me to menu plan and keep track of our schedual. We have routines and structure that get us through the day and I try to have reasonable expectations. My kids are going to fight, there will be toothpaste in the sink and everyone is going to need Mommy at once.

I think I'm going to write several articles on doing IT- the routine, the troubleshooting of life with lot of small kids. Then maybe people will stop asking me how I do IT!

Dogdog!

On the bed!

International Day of Acceptance



This is what 3E says about their symbol.

"It is a symbol of society accepting people with disabilities as equals and a symbol that people with disabilities accept their challenges and even embrace them. By replacing the wheel with a heart, the stigma of the wheelchair is also removed, and it can be a symbol for people with any disability or impairment. It represents the person, not society's perception of their lack in abilities.

The symbol is an attitude and a lifestyle. It's accepting one's abilities and rallying around that diversity and turning it into strength. It's loving and living life to the fullest no matter who you are and what you look like, what you can or cannot do."


I have two children with special needs. One with Down syndrome and one with Cerebral Palsy. I want them to be accepted by society, I want them to thrive in the areas where they are gifted and talented. I know that they will be contributing members to society if given a chance.

Today, as we celebrate International Day of Acceptance, let's make a choice to see those with disabilities not as individuals with limitations, but rather as individuals full of potential.

These individuals don't live disabled...they live!

Our girls live life to the fullest, and what a joy it is to watch.

Growing up

















This piece cuts to the heart of what I believe many of us parents struggle with in a culture that values 'normalcy.' It's written by Tekeal Riley of Bern, Switzerland (above with daughter Livia). Tekeal and I have an interesting connection. She posted a comment on the BLOOM blog and when we got to chatting I realized she lived in Bern, where my cousin Jennifer lives. We then realized that Tekeal had already met Jennifer at a support group for families of children with special needs. She can't remember how she came across BLOOM. Read more about Tekeal and Livia at LIVIA THE GREAT. Thank you Tekeal! Louise

Growing up
By Tekeal Riley

Many would agree that young children possess a cuteness which grants them a certain leeway of tolerance, if not adoration from others. The sweetness of pudgy cheeks or innocence of creative thought opens almost any heart, even in those remotely inclined towards turning away.

I think about this because sometimes I’m so enamored with my daughter’s cuteness that I wonder what will take its place when it fades away. How others may treat her differently when she’s no longer so small and precious. It’s called the Cuteness Factor and I’ve heard reference to it from parents whose kids don’t necessarily ‘fit in.'

Some parents seem to fear how others’ openness to their young child’s differences might dissolve or harden once the heart-warming giggles or age-appropriate silliness have taken on new form. (That, aside from the simple concern of having to deal with more of the real world and its rougher grown-up edges.) I think it’s fair to say there is fear of the differences shining through more once the cuteness melts away.

I know for myself that I still somehow get jolted when seeing youth or adults with Down syndrome. The world that I now live in  immersed in loving my 4 1/2 year old daughter who also has Down syndrome  gets shaken and torn, just that little bit. But over and over again.

I'm taken back to the first pamphlets given to me in the hospital after my daughter was born, after the doctor’s supposition of Down syndrome was placed irremovably in the air. I didn’t want to connect the dots. I already loved her so fully  knew I would even if this diagnosis was true  but I also didn’t want my daughter to be like that. Like in those pictures. Like them.

Contradictions of heart and mind.

Hence, almost five years ago, my ‘gap barometer’ was born: the one that reveals to me how much space exists between loving who my daughter is now, and who I’m still afraid for her to become. Between my fixed images of what I think I want, and what is. Between having my heart truly open to humanity in all its forms, or not. Between my ideals and reality.

We went to her directly, back then  telling her with our hearts and our words and our hands how perfect she was and how overjoyed we were that she was here. In some funny way I even felt special when hearing of the one in about 700 chances of having such a child. While waiting for conclusive blood-tests, I also told friends I hoped the doctor’s diagnosis was wrong.

I have compassion for the places of contradiction and wordless prejudice in me. For the parts that want to fit in. How long I have struggled with living up to my version of life within this culture of ambition and outward, appearance-validated existence. It is no wonder that somewhere in my cells the automatic response to Down syndrome was, No! Not that.

And so, shame and compassion walk hand-in-hand. Shame for the subtle ways I try to hide my longing for her ‘typicalness.’ For the tiny, shocking moments of self-pity. For feeling like I don’t provide her with enough. For envy.

Livia has shown me how afraid I’ve been of difference. Or rather, my compulsion to fit in. She has pressured the parts of me wanting ease and comfort, forcing my advocate self out of its skin. Her extra chromosome has also blessed me with finding an online community of bloggers, who, aside from offering useful information, have inspired me with their humanity.

Thank goodness I have the chance to grow up with Livia. To literally let my love for her merge with and eclipse the other pictures in my head. To let her cuteness unfold before me into something yet fully unknown.

Individual Education Plans 101















I am reading the Ontario Ministry of Education guidelines for developing and implementing individual education plans (IEPs). I read similar legal documents when Ben was much younger, but over time it seemed that what was written in his IEP wasn't necessarily followed, often because of a lack of resources.

Here are the most salient points I've learned, some of which I had no understanding of and which were never explained to me. This information is taken from Individual Education Plans: Standards for Development, Program Planning and Implementation, 2000, and The IEP, A Resource Guide, 2004.

The IEP is supposed to set specific, observable, measurable annual goals and learning expectations against which the student's progress is continually assessed.

The IEP is based on individual student strengths and needs that are specific, consistent with the IPRC and supported by assessments. In the information-gathering stage, students share their perceptions of their strengths and needs, talents and interests. Information about the student's personal characteristics, hobbies or interests and non-academic accomplishments can be included. Students assist in setting goals and understand the IEP so they can actively work to achieve it.

The IEP lists the teaching strategies, accommodations, staff and equipment needed to support the student's learning.

The student's current level of achievement in each subject, course or skill is described to act as a baseline against which progress is regularly measured and recorded in the IEP.

Students may be working on 'modified' or 'alternative' curriculum.

Modified curriculum means that changes are made to typical grade-level expectations. Students may have goals based on a different grade level or the number and complexity of the regular grade level expectations may be altered.

Alternative expectations are not tied to the Ontario curriculum and tend to focus on life skills. Alternative programs include speech remediation, social skills, personal care and transit training. At the high-school level, they are non-credit courses. "For the vast majority of students, these programs would be given in addition to modified or regular grade-level expectations. A very small number of students who are unable to demonstrate even the most basic literacy or numeracy skills may receive only an alternative report."

I had no understanding of the difference between modified and alternative programs and was surprised to learn that all of my son's programs are alternative and that he has no specific IEP goals related to reading, even though he can read!

The IEP must describe how the student's achievement of goals will be assessed and results must be reported to parents on the provincial report card. Teacher comments on student strengths, areas for improvement and new steps in reaching the goals must be identified in the IEP.

Regular evaluation to ensure the student is meeting goals is required, and if the student is not progressing, the IEP needs to be revised.

If the student can't participate in a provincial assessment, it must be noted why on the IEP.

If the student is 14 or older, a transition plan must be included in the IEP. It must include specific goals based on the strengths, needs and interests of the student. They must relate to work, further education or community living and include actions necessary each year to help the student achieve them.

Students in high school must be given the opportunity to provide input into the IEP. "Open communication and cooperation between home and school will...ensure that the two have similar expectations."

I feel silly that I wasn't better educated and up to date on IEPs. At some point I made the mistake of thinking that I could trust educators to do what was best for my son. That is obviously not the case and that is why parents have to take an active role in developing and monitoring their child's IEP.

Tell us your IEP story!

Being Sisters

From the moment Ellie laid eyes on Nina, she was meeting her new sister. Nina was not just another little girl coming to spend some time with us, Ellie saw her and loved her as a sister. Those first few months were hard on Ellie,  she wanted to love Nina, hug her, play with her, and show her the wonderful world of little girls. Nina, on the other hand, wanted little to do with Ellie. Ellie cried with a broken heart and would often ask, "Why doesn't Nina love me?" Then one day, Nina threw her arms around Ellie and pulled her close. This was the beginning of their relationship, the day they became sisters. It was an exciting and moving moment to watch.

If you were to see Ellie and Nina now, you would see that they are great friends. Sure they fight, they get frustrated with each other and annoyed at times. They grunt at each other and say, "I don't want to play with you anymore!" But every morning we find them together playing family, or strawberry shortcake, or barbies. They color, play babies, giggle, and make up stories. They are sisters.

But this has not been the case with Nina and Nichole. Nichole had a hard time liking the new little girl that came to her family. She did not like the fact that in some ways, because of Nina's mobility issues, Nichole was being asked to be a big girl, and not the baby in our family. Nichole quickly figured out that she could push Nina over easily, or hit her head with a video case (not sure why this was the object of her choice to hit Nina on the head). How we redirected, and how we hoped some day they would like each other.

Just the other day, I heard 2 little girls giggling, and what was my surprise but to find Nina and Nichole playing together. They were sitting in front of a fan with the air blowing their hair and having a great time imitating each other and laughing at the silly faces they made. I smiled, reminded that they do have a merry time before they settle down for a nap talking to each other, laughing, and sometimes playing catch from crib to bed, from crib to bed. They might not play together all day, but they do have a bond together. They are sisters.

ACC and Moms-To-Be #7 Story



Soon after posting the previous ACC Pregnancy Story,
I was contacted by another mom, Andrea, who has a
son who was born with Agenesis of the Corpus Callosum
and she expressed an interest in sharing her own story.

Several months ago I came across Andrea's blog about
her baby boy and I have been reading her blog posts
so it was a very nice surprise to get an e-mail from
Andrea, for the first time, and read about her desire
and willingness to tell a very private part of her
life in the hopes that it may help others and to let
them know "that they are not alone."
(in her own words)

It is truly a privilege to be able to post Andrea's
Pregnancy Story here for you to read.

Thank you very much, Andrea, for reaching out to
others from your heart.



Written by Andrea:

This pregnancy started off a little differently
from the very beginning. When I had discussed
with my OB-GYN that my husband and I were
thinking about trying to have baby #3, he went
ahead and sent me for some testing with a
high-risk maternal-fetal specialist due to the
fact that I had miscarried two times previously.
He didn’t want me to have to go through that a
third time before we did some testing to find
the cause. The initial testing showed that I
have a blood clotting disorder known as MTHFR,
which makes me prone to blood clots. So I was
put on a baby aspirin every day as well as 5
folic acid tablets per day. I also had to be
followed closely by the maternal-fetal specialist
throughout the pregnancy. This was actually a
blessing in disguise, because it’s this high
tech equipment and the highly-qualified
sonographer, who discovered Anderson’s ACC
before he was born.

We were so excited to find out whether or not
this 3rd child would be a boy. We already had
2 girls and while we would have loved another
girl just as much, my husband and I were hoping
for a boy. To be honest, I really thought that
was the main purpose of the 20 week ultrasound.
In fact, even though this was my 3rd child
(5th pregnancy), I didn’t realize how detailed
these ultrasounds are. I had no idea how many
things they check and measure. I mean, they
check for 3 bones in the baby’s pinkie finger!
Did you know that?

Throughout the ultrasound, we kept hearing the
sonographer ooh and ahh over our precious baby.
She kept saying how beautiful everything looked
and how wonderful the images were that she was
getting. She did reveal that the baby was a boy,
and we were overjoyed! It was about 10 minutes
later that her demeanor and voice both completely
changed all at once. She became quiet, concerned,
and intensely focused on something that she did
(or didn’t) see. She left the room, came back in
with another sonographer who then took her turn
looking at the screen, pointing to things on the
screen, and giving “looks” to the other lady.
Then they both left the room. At this point, my
husband and I both realized that something was
wrong, but we didn’t know what. All we knew,
was that they kept looking in the baby’s head at
his brain. The third time the lady came back
into the room, she told us that she was going
to put us in a room so the doctor could talk to
us and discuss the ultrasound results. I
stopped her mid-sentence and asked, “What is
going on? What is it that you are looking for
and can’t find? Or is there something you do
see that shouldn’t be there? We are completely
in the dark. We are scared. We need to know
what is happening.”

At this point, I hear the words “corpus callosum”
for the first time. I had no idea what it was,
or what it meant for my baby to not have it.
This is where my story really begins to differ
from that of others’. We were never told, nor
was it ever implied that we terminate the
pregnancy. In fact, at this first visit, quite
the opposite happened. When the doctor came
in to speak to us, she explained what the
corpus callosum is and what its job is in the
brain. She told us that the only effects of
not having one could be coordination problems
and possible seizures. I specifically asked
her what effects it would have cognitively on
the baby and she replied, “None at all.”

We actually left the visit feeling okay- not great,
but we still felt all would be fine. The doctor
told us that everything would be fine and more
than likely he would have no problems. It wasn’t
until I decided to do my own research that I
realized that this doctor had given me false
information. I began searching and searching
for anything I could find relating to ACC, and I
kept reading stories of people with ACC and it
didn’t take me long to realize 2 things: 1.
While all of the stories might share some
commonalities, each person with ACC is very
different. It is not a cookie-cutter diagnosis.
and 2. The doctor had not been completely honest
with my husband and me about the prognosis of
our baby.

I was outraged. I knew I could not continue
seeing a doctor who would not be up-front and
honest with me. I called my OB-GYN and told
them I wanted a 2nd opinion. They immediately
scheduled me an appointment with a different
group of doctors. In the meantime, we were
left to wait, to wonder, to worry, and to have
more questions than we had answers.

We received the letter in the mail to confirm
our appointment, along with the paperwork to fill
out for our first visit, and I noticed that I had
been made 2 appointments- 1 with the maternal fetal
specialist and the other with a geneticist for
“Genetic Counseling”. Keep in mind that at this
point my husband and I have not even accepted that
something is wrong with our baby. We are still
dreaming that when we go for the 2nd opinion the
ultrasound will reveal that this had all been a
mistake and the baby is doing well. Oh how we
prayed for the corpus callosum to be seen!

As you know from me typing our story, it wasn’t
there. However this doctor was much more open
with us. She wasn’t doom and gloom, but she would
present us with what she knew, and didn’t mind to
tell us that some things we would just have to
wait and see. We continued with this doctor the
remainder of the pregnancy.

As the pregnancy progressed, there was mention of
a small cyst, and also the fluid in the baby’s
ventricles was being monitored closely. However,
at each visit, the fluid stayed within the
“high-normal” range. Until the 34 week visit.
At this visit, the amount of fluid had increased
significantly- to the point that they were
concerned that the baby’s brain may be under
pressure. So it was decided to deliver the baby
via C-section at 37 weeks.

I was scared out of my mind the day of the
delivery. We still really didn’t know what to
expect. Would the baby have facial deformities?
Would he breathe okay? What problems would he
have when he was born? What about the fluid?
Will he need surgery for a shunt? There were
so many questions that couldn’t be answered
until he was out of my body and welcomed into
this world.

Anderson Knox Spears was delivered at 8:47 on
Tuesday, June 1, 2010, at a hefty 8 pounds and
2 ounces. Shortly after he was born, it was
determined that he was struggling to breathe
on his own and he was whisked away to the NICU
after I got one quick peek at him. I remember
that he was absolutely beautiful. I remember
the delivery being very peaceful. I remember
not being worried that they were taking him to
the NICU. I felt at peace with everything
now that he was here.



Later that night, I was wheeled to the NICU to
get to see my baby. I was not prepared for what
I saw. He seemed so fragile laying there with
all of the tubes and lines and machines. He
actually only ended up on a CPAP machine to help
his breathing, and he had a feeding tube in his
nose. He had an IV in his arm, and monitors on
his chest. He was in good condition, but to see
your newborn lying there helpless after delivering
2 healthy babies and getting to hold and love on
them immediately, there are really no words.



Anderson’s breathing condition had nothing to do
with his ACC. It had more to do with the fact
that he was born at 37 weeks and his lungs needed
a little more time.

While he was in the NICU, the testing began.
Chromosome testing, blood testing, MRI’s, xrays,
hearing tests, vision test, etc. Lots and lots of
tests.

It was determined that Anderson had hydrocephalus,
complete agenesis of the corpus callosum, and an
interhemispheric cyst. However, his chromosome
testing showed that he had no chromosomal
abnormalities.

At exactly 1 week old, Anderson underwent surgery
to have his VP shunt placed. His shunt is actually
placed in the cyst- rather than in the ventricles
in his brain. Come to find out, the fluid that
they had been watching was not in a ventricle- it
was actually in the cyst. It appeared at first
that the cyst had actually grown in place of the
right hemisphere of his brain. However, as the
shunt continues to work properly and the cyst
gets smaller, more and more brain tissue is
appearing. Apparently it is there, it is merely
hidden by the large cyst. He tolerated the shunt
surgery so well, that we actually got to come
home the day after the surgery.

Still not knowing what to expect, our family
prayed, we loved, we rocked, and we treated him
like a normal baby. His 2 sisters absolutely
adore him, and they have been the best form of
interaction and stimulation that he could get.
Anderson began to amaze all of us as he grew.



He is now 7 months old and continues to amaze
everyone who knows him. In fact, he is even
amazing the doctors. When they see his MRI
results and then they look at him- the 2 don’t
fit together. He is doing things that right
after he was born we were told he would never do.
In fact, when he was 6 days old, a doctor told
us he would be severely delayed in all areas
and we should go ahead and file to put him on
disability. We told him we were not giving up
on him. We were going to give Anderson every
opportunity to be successful…and what a wonderful
decision that has been!

At his 6 month developmental check up, Anderson
was on an 8 month cognitive level, and on a 4 month
verbal and motor skills level. He is sitting up
unassisted, but he isn’t rolling very well. He
can do it, but not without lots of encouragement.
He is getting a head-shaping helmet this month-
because he would not lie on the right side of his
head due to his shunt so his head is misshapen.
He is talking (babbling) more and more each day.
We couldn’t be more pleased with how he is doing.
He is a true blessing to our family. He is
defeating the odds that are against him. We know
he may hit some obstacles, but we take each day at
a time and focus on what he CAN do, rather than
worry about what he WON’T be able to do.

If you are expecting and have received this
diagnosis, it is not the end. It is the beginning
of a very special journey. Anderson is a wonderful,
happy child who brings joy to everyone around him.
We can’t imagine our lives without him. The truth
is that the doctors really don’t know. Every
child/person is different. The doctors do not
have all the answers. We have found that our God
is much bigger and more powerful than the doctors.
He is allowing Anderson to do things that are not
medically possible. We look forward to watching
him grow, develop, and continue to amaze all of us!



If you have any questions or would like to get in
touch with me, feel free to email me at: spears.andrea22@gmail.com

Also, if you would like to read more about our
journey with Anderson, visit our blog at http://spearsfamilyblog.blogspot.com


There are many different stories and outcomes of
ACC and Moms-To-Be.

I welcome every story.

Do you:

Have questions?
Need support?
Want information?
Have encouragement to give?

Do you want to share your own ACC story here?

If you do, please leave a comment below or you can E-mail me:
hope@aracnet.com

Want to talk to other moms who have been there and
understand? Join the ACC Listserv e-mail support group.


I hope to continue sharing more of these ACC and Moms-to-Be
stories out in the open in an effort to inform, encourage,
support and help other moms (and dads) out there who are being
told that their baby in utero has agenesis of the corpus
callosum.

This ACC and Moms-To-Be section will always remain open
and available to anyone who would like to tell their story.

Game to boost fitness, friendship

Scientists at Holland Bloorview and Queen’s University are developing a virtual-reality game that promotes fitness and social networking for teens with cerebral palsy. I interviewed Dr. Darcy Fehlings (left), co-principal investigator, to learn more about this two-year project.

BLOOM: What is the goal of this research?

Darcy Fehlings: To develop a fun, virtual-reality game that youth with cerebral palsy can use to improve their fitness and interact with other kids through a social-networking platform.

BLOOM: Why is exercise important for teens with cerebral palsy?

Darcy Fehlings: We find that they grow a lot in their teenage years, but their muscle strength doesn’t increase, so they become more tired when moving and that leads to a decrease in fitness. Their body is bigger, so there’s more mass to move, but they don’t have an increase in muscle strength. Our study is focused on kids who are using a walker and who might typically have moved to a wheelchair for longer distances. We want to develop a game that’s fun and keeps their muscles strong so they can continue walking with a walker.

BLOOM: What would the game look like?

Darcy Fehlings: The teen will hold a playstation controller that moves an avatar. They will sit on a recumbent bike in front of a computer or TV at home, and the faster they pedal, the more they control the game. Queen’s University has a lot of expertise in modifying games so that if two students have different fitness levels or physical disabilities, they will be perceived as equal. Their effort will result in the same impact. So no one will be discouraged because they’re playing with someone at a different ability level. Dr. Nicholas Graham is the co-principal investigator at Queen's.

BLOOM: How does the game improve a person’s fitness?

Darcy Fehlings: The bike gives them a cardiovascular workout and builds leg strength. But we’re not only interested in improving physical fitness. We want to engage teens in the social networking aspect of the game. They will participate in the design of the game so it’s something they’re interested in.

BLOOM: Is there anything like this on the market?

Darcy Fehlings: Nothing that’s geared to youth with cerebral palsy and physical mobility issues. We’re taking advantage of the explosion of virtual-reality exercise programs on the market. What’s also unique about our project is the idea that we can use networking to decrease social isolation.

BLOOM: How will the game be developed?

Darcy Fehlings: We have a collaborative team of experts in cerebral palsy, virtual-reality exercise, programmers and our youth with cerebral palsy. They will work together in focus groups to develop the game concept. The virtual platform is already in place so we need to develop the game more from the storyline perspective.

BLOOM: How will the game be tested?

Darcy Fehlings: We will do baseline testing of fitness level, whether they're still able to use their walker, how much they walk each day and social quality of life.

BLOOM: Who is funding the project?

Darcy Fehlings: It’s being funded by NeuroDevNet, a Canadian Network of Centres of Excellence. NeuroDevNet’s focus is to bring together basic scientists and clinicians working with children with cerebral palsy, autism and fetal alcohol syndrome.

Photo by William Suarez