Football players protect student from bullying

Happy Halloween! Teet-teet!

Since school began, George has been trying to say new words, unprompted. While we are still working blending, adding ending sounds and so on, he is working hard on his own to speak. Context is still important (the word for "Candy" and his teacher's name sound alike) but he's coming along well.

Last year, we tried to teach him to say "trick or treat" and he would have none of that! This year, he went around the house saying, "Howl'ween! Howl'ween! I cow. Howl'ween ah' my house." When I asked him what you do on Halloween he said, "Knock! Knock! Teet-teet! I eat key-key!"

(Translation: You knock on the door. Say, TRICK OR TREAT! Then I eat candy!)

It's hard to write exactly how he speaks. Tone and inflection are so important! Plus, I don't know the correct way to write how he says words like "Eat." The "ea" part sounds correct but he doesn't put a "T" on the end... but he does. It's almost like a "th" sound but he is not saying "Eath" with a lisp. It's a very soft "T" if that makes sense.

Anyway, I am so happy that he will say "Trick or treat" tonight!

So Close {a guest post}

So, it's Down Syndrome Awareness Month. October is the month that we bring awareness. We celebrate our kids. YAY! And for the most part, I do that. Every day on Facebook I've been posting cute baby pictures of Kennedy and sharing statistics and facts and I LOVE my daughter. Let's face it, she's a rock star. If you know anything about her, you know that she has overcome A LOT with a huge smile on her face and said, "Now what?!" She amazes me over and over.

But.

For one minute, I am going to step away from the yellow and blue pom poms and I'm going to whine. Just for a second. Because sometimes, having Down syndrome isn't fair. People ask me all the time if, given the choice, would I take it away from Kennedy. And I wouldn't. Because while I do not believe that Down syndrome defines her, it IS a part of who she is. If she were not born with Down syndrome, she wouldn't be HER.

But.

She also wouldn't have to work SO DANG HARD at every freaking thing she does EVERY single day. I watch her struggle in school... to read, to write, to keep up with her friends, and she's close. She's so close. And she's doing a GREAT job, but she knows she has to work twice as hard to do what everyone else is doing. And it's frustrating for her.

I listen to her when she comes home and says things like, "I was in PE, but I just. couldn't. do it." Her favorite class. She loves it. And I know her friends encourage her. And I'm sure she's close. And I want to tell her, "Baby, I can't make those baskets either." But sometimes that just doesn't make a difference.

I watch her struggle in dance. Something she LOVES more than anything else in the world. She wants to get it JUST right. She watches herself in the mirror. She practices in her room. Every day. And she's SO close. But she knows it's not quite perfect. She knows she's good, but maybe just not good enough. And sometimes, that hurts.

Sometimes I see my daughter through the eyes of the rest of the world. They see Down syndrome. And that's not fair. They want to put her in this box and say, "She can't." I see this beautiful, smart, amazing, self-confident, talented little girl who can do anything she sets her mind to. I have NO doubt about that. She has worked harder at everything every day of her 8 years of life than I have in my 33 years, and sometimes it's STILL not good enough and that just sucks. Some days it makes me want to scream. Often it makes me cry.

But.

I will brush the tears away. Like I always do. I will pick up my blue and yellow pom poms once again and I will pick Kennedy up from school in a little while. And when the "world" tells her that she's not good enough, that she's not smart enough, that she's SO close, but maybe not close enough, I will pull her tight and make sure she knows that she is always the VERY best Kennedy in the whole wide world and I'm so proud of her for working so much harder at life than anyone I know.


Happy Down Syndrome Awareness Month
***
 
About the author: Renne Garcia blogs at Like With My Special Ks where she takes on day to day life with her five amazing children: Kassidy, Kameron, Kennedy, Keeghan & Kellsey, and a husband in the Military. Join them as they face issues with Down syndrome, Leukemia, Deployments, and every day life with 5 young kids!

ACC & Moms-To-Be Story #17




I am very thankful to all of the Moms and Dads who
want to tell their story about being pregnant and having
a baby with Agenesis of the Corpus Callosum.

I received an e-mail from Rossella, a mother who lives in Italy who has a young daughter with ACC.

In her e-mail she wrote:

"I am sharing below my pregnancy experience and these first years with Teresa. I know that there is a group with pregnancy stories, feel free to share my story as well. I would be happy if my story can help or inspire other parents."

The mother, Rossella, is very actively involved in the Italian ACC forum (a wonderful group) that branched out to form a voluntary non-profit organization in 2011 called Associazione Anomalie Corpo Calloso Italia, also found on Facebook, and they just recently held their very first Conference in Italy in September of 2012.

Thank you very much, Rossella, for reaching out to other people and for offering hope. It is wonderful to hear from you all the way from Italy, and it's an absolute privilege to be able to post your story here on the ACC blog for others to read.

Each story is as unique as each child who has ACC.

I believe in my heart that every ACC story told will ultimately reach out and touch the life of someone else in very special and amazing ways.




Written by Rossella

Teresa’s Story


I had a relatively quiet pregnancy. I am a United Nations worker and while expecting Teresa I was serving in Congo (Drc) and then in Haiti. So I was healthy and feeling well most of the time and working almost as usual.

When I was 33 weeks pregnant, I started to have strong contractions. I went to my doctor and for the first time he realized that Teresa’s ventricles (I hope the term in English is right!), were too big and he suspected Hydrocephalus. I immediately came back to Italy and had additional check up which confirmed the Hydrocephalus and a suspected ACC. I went through a Fetal MRI scan and the ACC was confirmed. To this day I am sure that the Hydrocephalus is a consequence of the ACC and that all that liquid just took the empty space of the CC [corpus callosum]. Anyway, I was closely monitored and by week 37 Teresa’s ventricles were 27mm. quite big so they decided to go for a C-section as Teresa needed an emergency surgery.

Teresa was born on November 12th 2009 and after two days she underwent her first surgery. I remember the day of the surgery when she came out of the operating room, she was awake, with her head wrapped in a big bandage, she was not crying, she stayed strong. This was moment when Teresa was born to me as a mother, when I promised her I would always stay strong for her.

I have to admit that those first weeks have been the most difficult moment of my life so far. When Teresa was diagnosed ACC and Hydrocepahlus a few doctors told me that she would be severely handicapped and that she could possibly not even recognize me. One doctor suggested I go to UK for abortion
(I was 8 months pregnant!). This was devastating for me as we were not expecting this and as you can imagine those first few days, both me and my husband, Miguel, went first through denial (maybe they made a mistake) then despair and finally we started to accept it. I remember very well that one day my husband, Miguel, told me:

“Imagine if we have Teresa and she is ok, without ACC and without Hydrocephalus, imagine that one day she has a car accident and she becomes paralysed or worse, what would you do then? Abandon her? Throw her away?. So, we will welcome her, we will love her, she is our daughter and we will take her as she is.”

That is how we have lived so far.

Teresa is almost three years old and she is a cheerful and always smiling little girl.

Since she was three months old we realized that she had some delays. She would not maintain her head up and would only look to her right side. We started therapy, first at home and since she was 6 months at a therapy center. She started to sit on her own at 9 months, walked with support at 18 months and walked alone at 22 months. We had a lot of difficulties with mastication (chewing food) and she first ate a biscuit on her own when she was 20 months old. In the meantime we had another baby, a boy, and I am sure that his presence has helped Teresa tremendously. She picked up her first biscuit when her brother 5 months started himself, she saw him and wanted to try. Now at 34 months she eats on her own both with a spoon and with a fork, she eats everything!

Since she was two she started to attend a kindergarten and the presence of other children have highly benefited her.

Her main difficulties remain in her “social” skills and in the speech. She only says a few words, though she makes herself understood with gestures, and sometimes she gets very frustrated for this. She seeks the company of adults as I am sure she is not able to relate to children and she is not able to communicate with them. When other children take/pull toys from her hands she is not able to defend herself, and also with her brother I have seen now that she reacts after a few minutes, not on the spot.

She likes music, dancing and singing and I have realized that if I want her to do something and she does not get it I have to sing it to her.

She goes slowly in her learning process but I would say steady. I can also say that sometimes she remains stuck for a while and then all of a sudden she makes a big step.

Like for months she was walking with a support and then one day, all of sudden I went to pick her up at therapy and she was walking on her own!

She is a cheerful girl, she is very independent in the house and she can play on her own or also engage the adults to play with her. I leave her some “quiet” time, when she can be on her own without too many inputs (school therapy etc) and we have realized that in these moments she invents her games like all children, she plays with her doll (puts her to bed, or she pretends she is on the phone) she imitates the adults like all children.

I attach a couple of pictures, so you can see her. She is the joy of our life.

2 1/2 year old Teresa

Teresa almost 3 years old

Rossella
Mother of Teresa
Italy


There are many different stories and outcomes of ACC and Moms/Dads-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 E-mail me, (Sandie):
hope@aracnet.com

Want to talk to other moms (and dads) 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/Dads-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/Dads/Parents-To-Be section will always remain open and available to anyone who would like to tell their story.

Closer

Most of the time, I love my life in the Midwest.

We have a wonderful school district that works hard to meet the needs of all my children. We are close to therapists and we have a wonderful pro-life, NFP only doctor who takes great care of all of us. We have good friends and 2 of the four sets of godparents are in town.

Most of the time, I know that it is good that we live here, have our own lives and are making it on our own.

I miss my cousins and extended family but I am happy here.

Most of the time.

It is times like now, with Hurricane Sandy raining on my family, that I wish I was closer. I wish it was easy to pop in and see how they were doing. I wish I didn't have to rely on e-mail and Facebook to know what is going on. Yes, I know we would be in the hurricane too... but I still wish I was closer.

It's times like now I wish I could up root everything I love about our life here and plunk it down closer to my extended family.

To all you in the middle of Sandy, stay safe!

Should the Adoption Tax Credit be Renewed?

At the New York Times Room for Debate page, a discussion of the adoption tax credit, pro and con.  The MOST AMAZING thing is that a birth mother and two adoptees are included in the debate!  Here's a sample of the debate:
Children’s lives depend on the renewal of the adoption tax credit. Most adoptive families need it in order to afford adoption, which costs an average of $30,000. Most of our applicants at Helpusadopt.org spend $30,000 to $50,000, and sometimes more depending on the circumstances and travel involved.

Many American families seeking to build their families through adoption can provide for a child on a day-to-day basis but cannot pay these fees in full and up front. So these large costs present insurmountable financial obstacles.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The Adoption Tax Credit originated mainly as an incentive to find families for special needs children who needed homes. (At the time it was nonrefundable, meaning it would only offset any taxes owed, but would not apply to families with too little income for a tax liability.) Lobbyists from the adoption industry pushed to expand the credit.

This increased the demand for adoptable children and adoption agencies responded by finding more mothers at risk to increase their own profits. Historically, as the adoption tax credit went up, agencies followed suit and raised their fees as well.

For a mother facing relinquishment, that same credit could very well be the bit of certainty she needs to parent her own baby. She would know how to pay off medical bills, or pay for day care, or take time off from work to enjoy her child.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The adoption tax credit should not only be renewed, but Congress should once again allow it to be refundable – available even if an adoptive family doesn’t have an income tax liability to apply against -- as it was in 2010 and 2011.

A refundable credit would ensure that more families of modest means can provide homes to vulnerable children. When children are adopted from foster care the credit can help care for children with special needs, and keep brothers and sisters together. A 2007 study showed that families who adopt from foster care have, on average, lower incomes than other adoptive families.

* * *

Unless the tax credit is refundable, many children would remain in expensive foster care. Analysis has shown that each adoption from foster care saves the government up to $235,000, so legislation encouraging adoption from foster care — like a refundable adoption tax credit — can both help vulnerable children and save taxpayers money.

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The original intent of the adoption tax credit was to help families adopt through foster care, because, as Senator Mary Landrieu, Democrat of Louisiana, said, those parents “are of lower income than those adopting with an agency or internationally.”

But extending the tax credit to families who wish to adopt internationally, in 2001, was a misplacement of resources and effort. It benefits American families, often upper middle class and white, but not struggling families overseas.

* * *

Many children adopted internationally, said Mary Martin Mason of the Minnesota Adoption Resource Network, have post-traumatic stress disorder or fetal alcohol syndrome, “as well as traumatic orphanage experiences that are overwhelming to parents who try to parent with traditional techniques. These children are in jeopardy of adoption dissolutions if their families can’t find adoption-competent therapists. Funding post-adoption supportive services such as therapists for adoptive families is truly needed.”

Allowing the adoption tax credit to cover international adoptions only adds to this problem.

 ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

As an adoptee who’s just begun to learn about my birth family, I can honestly say adoption saved my life. If my biological mother had raised me after I was born, or if I grew up in foster care, I cannot imagine where my life would be.

There are more than 100,000 children in foster care. They can live in three to as many as 12 different homes before they age out of the system. When they do age out, they have no parent’s arms to run to when life has the best of them. They have no place for guidance, financial assistance in case of an emergency or help in fulfilling their dreams. Just 2 percent of foster children earn a bachelor's degree or higher, and studies have shown that most prison inmates have been in foster care at some point in their lives.

These children deserve and need a place to call home, but the high cost of adoption deters many families from considering it. The adoption tax credit is one of the most important resources for them.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 Please comment on the New York Times site, and whatever your opinion, please compliment them for including multiple voices not usually included in these debates.  This is really a HUGE DEAL!

It's Only Hard Sometimes {a guest post}

Lately I have been noticing a lot of people staring at us when we are out. I know it's not common to see two children with Down Syndrome in a family, so it doesn't bother me that much.

You can usually tell what a person is thinking (when they are looking at us), by the expression on their faces. Most people look for a while and then smile. Some people, not many, look away in disgust. Some people look at us with pity.  

Sometimes I wish I could carry cards in my purse and hand them out based on what I think the person looking at us is thinking.  For the people who smile at us, I would give them a card that says, "You got it, we have a pretty good life!"

For the people who look away in disgust, the card would say.... wait, those people don't deserve a card.  Never mind.

For the people who look at us with pity in their eyes, the card would have to be relatively big. It would say...
"Oh, please don't pity us.   
We had a prenatal diagnosis with our 6 year old.   
We chose her.   
She is a huge source of joy to us.   
She has struggled with so many things 
and we are incredibly proud of her. 
She is our hero.  
As for the baby, we chose her as well.   
We adopted her~ she came to live with us when she was 6 months old.  
She is incredible.   
We have an open adoption and a great relationship with the birth parents.  
She is loved beyond belief." 

Along with the cards, I would love for them to take a little peek into our lives.  
I wish they would have been at our breakfast table this morning when Lexi was fussing, so Lila reached into the cereal box and handed Lexi a piece.  Lexi immediately threw it across the floor. Lila said, "Wexi, dat wasn't nice.  I give you another chance".  She reached into the box again, handed another piece
of cereal to Lexi, and it went flying across the kitchen. Lila said, "Dat's ok, sweet girl, you don't feel well. You getting you teeth!" 
 
In the playroom this afternoon~ 
Lila was jumping full force on the mini trampoline when Lexi crawled up on the trampoline and tried to stand up. Lila stopped jumping, reached down and gave Lexi a hand to steady her balance.  
 
In our kitchen tonight when Lila was dancing around and Lexi was trying to dance with her ~ falling down about every 4 steps then getting back up to join her big sister.  
 
In the bathroom tonight while Lila was sitting on the potty and Lexi was sitting on a stool, hanging on her big sister's every word, watching as Lila sang Twinkle, Twinkle Little Star and doing the motions.  Lexi was trying to do the motions with her and Lila was cheering her on. "Good job, Baby Wexi!  You doing it!".

Is it hard sometimes? 
Absolutely. 
I've never experienced anything in life that wasn't hard at times.
 
I raised two typical kids and that wasn't easy all the time.  
Parenting is a tough job.  
 
Do the good times outweigh the tough ones? 
In a huge way.   
 
Would we trade our life, change our choices? 
Not in a million years. 
Not for all the money in the world.  
 
 
***
About the author: Linda lives in Colorado with her family. She is blessed to be the wife of an amazing husband and the mother of 5 awesome kids including her beautiful daughter-in-law. Linda is a stay-at-home mom and an avid volunteer. She started her blog, "Lila's Miracle Life" because her daughter with Down Syndrome, Lila, has had a number of health issues and wasn't expected to live beyond birth, if she made it that far. She is now 6 years old and a joy to her family. Linda's family recently adopted another little girl with Down Syndrome. You can follow their story at Lovin' Life With Our Blue Eyed Beauties.
 

Answering your question on withdrawal of fluids in newborn

On Friday a parent posted this question on the BLOOM blog:

"Is it routine to withdraw fluids and nutrition from infants in the NICU? That is what we were offered for our son in hospital after we removed the ventilator and put a DNR on his chart and waited for him to die. He didn't die. He didn't need a g-tube, he was able to breastfeed and get enough nutrition for himself yet it was offered to us to just stop feeding him orally, give him morphine for the pain and let him go. Is this sort of thing common?"

I contacted Dr. Jonathan Hellmann, who is clinical director of the neonatology unit at the Hospital for Sick Children in Toronto for clarity on how to answer this question.

Dr. Hellmann authored a paper earlier this year about parent perspectives on withdrawing intravenous fluids in newborns with severe neurological injury or disease where the decision to stop life-sustaining medical treatment such as ventilation is made (Withdrawal of artificial nutrition and hydration in the Neonatal Intensive Care Unit: parental perspectives). None of the newborns in the study could safely be fed orally.

According to the study, in addition to requiring the full support of the parents and the senior medical staff and team, the practice of withdrawing artificial nutrition and hydration requires "the clear demonstration of the inability of an infant to safely tolerate oral feeds (oral feeding was regarded as routine care even in those in whom it took many hours to achieve a satisfactory intake.)"

Given this criteria, I asked Dr. Hellmann whether withholding milk from a baby who is able to breastfeed -- as reported above by the parent on BLOOM -- fell outside the practice of withdrawal of artificial fluids and nutrition.

Dr. Jonathan Hellmann: Your interpretation is correct. Only if the feeding is regarded as medical treatment i.e. requiring tubes, IVs, lines etc. is it ever our practice to possibly raise the issue with parents of a profoundly affected infant. If the child is able to tolerate feeding it is absolutely not acceptable to consider withdrawal of hydration and nutrition. I am extremely concerned that individuals might interpret our findings without every effort being made to feed even small sips, and only when it is unsafe to potentially raise the issue. It is certainly not common practice here and requires very careful consideration in every case.

I hope the parent who posed the question above sees this blog and lets us know if she has more questions.

Overheard: Well, how many do YOU have?

Adam: There's a sale on Nerf guns at this store.
Me: Oh, cool. Camille wants Caroline for Christmas.
A: Huh?
Me: The new American Girl doll.
A: She doesn't NEED another doll. She doesn't play with them.
Me: Yeah she does. Where have you been? Besides, you are talking to the wrong person. How many do I have? I got one every Christmas for years.
A: She has FIVE.
Me: And how many Nerf guns does Joseph have?
(pause)
A: About that Bucky Pirate Ship for George...

I think Camille is getting Caroline for Christmas. Sweetie, when you are much older and read this, you can thank me!

A toileting taboo: Kids and incontinence















Pee and poop. We all do it. But what if you couldn’t control when you ‘went?’

What if catheters, timed toilet trips, medication, diapers and sometimes surgery couldn’t guarantee that you wouldn’t have an accident?

How would you keep it a secret?

How would other kids treat you if they found out?

Urinary incontinence and how it impacts children socially was the focus of a qualitative Holland Bloorview study of 11 youth with spina bifida aged six to 18 and their parents.

“No one can tease the kid in the wheelchair, but it’s not ‘normal’ to be in a diaper when you’re eight-years-old,” said lead researcher Amy McPherson, recounting what children told researchers in interviews about how other students responded to their incontinence.

Researchers found that about half of the children were bullied – with a couple being completely ostracized – and most had no close friends. “One parent said she hadn’t organized a birthday party for her child because she didn’t think anyone would come.”

Two children who had learned to self-catheterize at an early age did have good friends and participated in typical childhood activities like sleepovers and camp.

But telling their friends about it was nerve-wracking, Amy said.

“Even the kids who functioned well said, ‘Well, I decided to tell my friends before they found out and ran away screaming.’ And even those kids didn’t share ‘the whole story.' They just told their friends they do things a little differently.”

Toileting in our culture is one of the last taboos, and for students, having an accident or a partially-visible diaper was “social death,” Amy said.

One of the themes that came out in interviews was that incontinence marked youth who wanted to be viewed as normal, and was a barrier to being accepted, having friends and going out.

“Because of the stigma, and the fear that others may find out, these students don’t often put themselves out there and instigate friendships,” Amy said. “It’s not something you want to talk about. You have to keep it hidden.”

“These kids feel stress to keep up a fa├žade,” said researcher and ambulatory care nurse Julia Lyons. “Their goal is to fly under the radar, ‘for no one to notice me.’”

Ironically, parents who were interviewed separately from their children often began by insisting that their child was a normal and regular kid. "Then as the interview went on, it became obvious that their child didn't have friends and wasn't participating in activities, sleepovers, sports," Amy said.

Another theme was independence. “A lot of parents wanted their kids to take ownership of the incontinence issues and felt they needed to learn to do it themselves,” Amy said. “There were still 16- and 17-year-olds who weren’t catheterizing themselves. They used a diaper and had mom do their personal care.”

However, parents sometimes minimized just how hit and miss managing incontinence was for the youth.

“There isn’t a magic bullet for this,” Julia said. “It’s not like if you break your arm they give you a cast. These kids have to do a combination of catheterization and taking medications to allow them to hold more urine and using diapers and pads and even then it’s not 100 per cent effective.”

Drinking a can of pop, participating in gym class or simply being nervous can erase children’s vigilant efforts to stay dry. “The system is so tenuous they’re walking on egg shells on the best of days,” Julia said.

However, parents tended to expect perfection.

“One parent said: ‘She fell off the wagon’ – about an eight year old!”

The researchers noted that some students who did self-catheterize still wore a diaper as a security measure and were reluctant to let it go. They live with the fear that "tomorrow their routine won’t work," Julia said.

School accommodations – such as having students use the staff washroom where they can store their supplies – often reinforced the perception that they were different.

Typically children’s incontinence wasn’t shared with the class, but the student would have a signal to let the teacher know they needed to go to the bathroom, and would be taking longer than expected.

Unfortunately, some of these signals were stigmatizing: “In one case, the Grade 5 student had to place a giant, city-issued traffic cone on her desk to say she’d be back in 10 minutes,” Julia said.

Families reported a lack of incontinence products that were discrete and effective.

The researchers note that negative stereotypes about “having a leaky body” don’t just exist in childhood. “Adults who are incontinent are less likely to have meaningful employment and romantic relationships, so there are long-term implications for children with incontinence,” Amy said.

A larger study is needed to better identify what promotes continence and social acceptance in children with spina bifida. One tool to support children may be an online group where children who are going through the same thing can share their experiences.

This small study was launched because clinicians heard frequently that children with spina bifida and incontinence were bullied.

Dr. Paige Church and Nicole Fischer were the other researchers on the team. Their findings will be presented in a poster at the Bloorview Research Institute Symposium Nov. 13 and submitted to the journal Disability and Rehabilitation.

Chat with us at Parent Voices










Come visit us at Parent Voices at Holland Bloorview on Facebook!

This is a place for parents of children with disabilities to ask questions, share practical information, discuss topics and support each other.

Where useful, we’ll offer expert advice on how to navigate the system and what programs and services are available at Holland Bloorview and beyond. We’ll also let you know about parenting resources.

Read our About section to learn more.

Please hop on over and "like" us and give us some help around medical jargon we need to simplify! Louise

(When commenting @Parent Voices, please use only your child’s first name and don’t share detailed information about your child or a health-care provider. We will remove negative comments about people or organizations)

Special Olympian fires back at Coulter

Watch this interview with John Franklin Stevens (left), a Special Olympian who has Down syndrome. Then read his Open letter to Ann Coulter.

Communication - input from parents

The topic of speech-verbal language (or lack thereof), in some children who have ACC, comes up often by concerned parents in the ACC support groups.

Sometimes I discover that there are hidden gems of information buried in some of the larger ACC documents that have been posted on this blog. So, today I decided to revive this buried treasure (found in the ACC-Reading and Comprehension document) involving communication and kids who have ACC.

Below are some of the comments, written by parents of kids with ACC, regarding the topic of verbal language.

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:

"I had worked with him [my son] 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 (of 16 year old child) 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."


ADDITIONAL STORIES FROM PARENTS:

Sixth parent writes:

"My eleven year old son who has complete acc has no problems with his speech per se and never has, he has always passed the milestones like an average child. He can read but it has taken longer, he is at the stage of reading slowly and in a monotone voice, has yet to read with intonation or inflection in his voice. I know this will come with time.

He does sometimes have trouble with his 'train of thought' when trying to relay something to me, he needs extra time and hates to be interrupted, which is understandable.

Otherwise , his communication skills are pretty 'normal' for his age."

Seventh parent writes:

"JM is 4 years old (full ACC), he still speaks no word, just makes some sounds like "tetetete."

However, we realize that he understands and makes requests through some gestures. The hearing test showed hearing perfection.

We continue to stimulate speech, we believe that it will come. At the same time, we will start using alternative communication."

Eighth parent writes:

"Our daughter started babbling dada and mama at 4 months. She was quick to add to her vocabulary list and by one year she had about 25 words. We noticed from an early age that she listened and responded to music in a way that was almost magical. She would seemingly concentrate on the words while the music inspired her to move and dance. She is still rather musically inspired and her concentration while listening to music has transferred to her concentration of listening to language.

She is now 2 1/2 and she speaks in full sentences with near perfect enunciation. She isn't necessarily slow when speaking, but mindful of saying each word properly. When comparing speech to her older sister, my younger daughter has a much more developed vocabulary at her age. (Of course having a sibling close in age undoubtedly helps.)

She also has playful voices for when she's silly, or a "scary monster." She sings songs and can recite nursery rhymes. We feel her grasp of language is more "advanced" than her sisters was when she was her age.

We found out that she was put together "extra specially" while I was pregnant. The doctors prepared us for very involved disabilities with little hope for a bright future. I know there are lots of children with ACC that are mildly affected if at all but we just never heard about those children when we started to learn about ACC. Our daughter has had very typical development and has even been ahead in some areas."


Would you like to include your input about your child who has ACC and communication? Please e-mail me your story and I will gladly post it here on this page.

I welcome and encourage you to share your own comments.


For more information about Agenesis of the Corpus Callosum and speech therapy, check out the document below, which was presented at the 2004 ACC Conference.

Speech & Language Issues Associated with ACC - by JoAnn Tully, MS-SLP

*Note: JoAnn Tully is the mother of a grown daughter who has ACC and is also a Speech-Language Pathologist.

Don't show your ignorance Ann









My British dad used to use that phrase: "Don't show your ignorance."

And in the context of Ann Coulter (who tweeted the above Monday during the final debate in the U.S. presidential election) it fits like a glove.

I'm so glad I don't live in a country where ignorance and hatred are accepted as "free speech."

The media describe Ann as a Conservative pundit.

However, a pundit -- "a learned person" who "makes comments or judgments in an authoritative manner" hardly describes someone whose best criticism of the United States President is to call him "the retard."

There isn't anything learned or authoritative about tweeting a schoolyard taunt that has been used to dehumanize people like my son for decades -- a word that isn't even used in medical circles anymore.

I took a quick look at Ann's website, and it spews hatred for marginalized groups, so I guess it's not surprising that she'd add a slur against people with intellectual disabilities to her arsenal.

What does surprise me is that Mitt Romney, the Republican contender for the U.S. presidency, would not publicly call her on it.

With friends like Ann Coulter in your camp -- who needs enemies?

There were a couple of news outlets that did report on just how offensive, infantile and "unfunny" she is.

Ann Coulter's 'retard' tweet says more about her than her politics (Leave it to Canada's national newspaper to bring some sense to the topic).

CNN has this excellent piece: Ann Coulter's backward use of the r-word

My friend Ellen Seidman, at Love That Max, who has already done so much to call for respect for our children was forced to devote a blog post to Ann's antics.

At this poll in the British Guardian newspaper, 84 per cent say the comment is offensive. And in response to "Is Ann Coulter's comment appropriate?" in this Toronto Sun poll 68 per cent said "no way."

So yes, I do call on Mitt Romney to weigh in on Ann Coulter's use of the word "retard" to describe President Obama.

Mr. Romney: Is this the kind of language and theatrics you encourage in your own five children?

What really happened

Several people e-mailed me after my post on Monday to express concern and prayers. Thank you for thinking of us and keeping us in your prayers. The following is what I put on my Catholic parenting forum. It is what prompted the anxious post:

Thank you to everyone for the prayers over the last few days. We/I really needed them!

On Friday, DCFS came to the door with alligations against us and our children. Several of them were directed towards our child with special needs. I was very upset that this happened and the more I thought about it, the more it scared me. Based on the details that were given, this person had to be physically close to my children and talk to them. We are careful who we leave our children with and they all know about G's needs and how we help him. To think that this person thought our children needed DCFS called on them made me physically ill.

The social worker had to go to the school to talk to my older children. The kids were very unphased by this. Afterwards, I called the principal to give her a heads up. She told me of the school's protocal when DCFS comes and assured me that the call did NOT come from the school. I believe her.

I reached out for prayers and support and I am glad that I did. Prayers carried me through the weekend and kept me from having an anxiety attack. As it was, I have not been sleeping or eating well.

I spent four days getting our ducks in a row. I called our current therapists and doctors for formal letters stating that our children are getting the help they need. I made sure the file of G's paperwork was in order. Because my children and I see a chiropracter on a regular basis, she was able to write a letter detailing the treatments my boys undergo and state that our family is healthy in every sense of the word. I have similar letters from our SLPs, one of whom has worked for our family for two years. These are now on file again just in case.

The social worker came back today because they need to check on children under six two times before the case is closed. The boys greeted her with a "hi!" She told me she had no concerns and thanked me for cooperating with her. I gave her a timeline I typed up of when my kids began what therapy and with whom and told her to keep it on file. The "case" will be formerly closed on Friday.

I know when the call was made and that it was annoymous. We may never know who made it but it makes me sick to think that someone is watching my children and making horribly wrong assumptions. People can and should make calls to DCFS if they suspect abuse; however, these calls should not be made lightly. The allegations made against my children and, thus, us were NOT reasons to call DCFS and could have been addressed by simply talking to us. The physical, mental and emotional pain we have been through in the past few days has been nearly unbearable.

Thankfully, this is all behind us and we can go on with life as normal. And, hopefully, I will get some sleep tonight!

I may give more details in the following weeks or months. I do not know. I am feeling so much better now that this is over with!

Down syndrome and the brain

I asked if there were any questions you had regarding Down syndrome, and this was a great question to ask:

"I am curious about Down syndrome and how, if any, it affects brain chemistry, comprehension, and skills (are there just delays age wise, lags, new ways of doing the skills, or incomplete skill learning). A child we know has a specific mental disorder which effects skills (not saying DS is a mental disorder, but only comparing this to how the brain is effected and therefore skills) and I have been very interested in the ins and outs of it."

First of all, this is probably the greatest challenge when any parent has a kid diagnosed with Down syndrome, because let's be honest, we all want out kids to be smart. This is also the reason why we fight so hard when people flippantly use the word retarded. This is why talking about our children having an intellectual disability is not our favorite subject.

However, putting emotions aside, yes, most people with down syndrome have a certain degree of an intellectual disability. Here is the thing, people with Down syndrome learn different, and we are just beginning to understand how their brain functions.

People with Down syndrome also have hypotonia (or low-muscle tone). This affects much of learning, since we have muscles...everywhere! Think about all the learning babies do when they begin to crawl and move around, think of how curious toddlers are as they begin to walk. For kids with Down syndrome, because their muscle tone is low, these things happen later. So all the things that kids learn as they explore, will happen later only because that is when their bodies allow them that freedom.

Low muscle tone also affects fine motor skills. While other kids are holding a crayon and coloring, it takes a lot more work for a child with Down syndrome to have the strength to hold a crayon properly and have the precision of small movement to do things like color or trace letters. So imagine school, where  a kid with down syndrome is already lagging behind, not because they don't know their letters, or even sight words, but maybe because writing is so hard and everyone else is going so much faster. Frustrating, don't you think?

And there is speech. Did you know that your tongue has lots of muscles? There are more muscles in your mouth and tongue and face than anywhere else. People wrongly assume that because my kid has poor speech, that she is not smart. that she doesn't understand, or that she doesn't get it. let me assure you, she does! For example, my daughter is self-conscious about her speech, so she chooses not to talk to other people, because she knows they won;t understand her. To me, that is a sign of a smart kid.

We are just beginning to tap into the potential of individuals with Down syndrome. So while there is a lower IQ, we are beginning to see that it is not what we thought it was. More and more people with Down syndrome are breaking stereotypes. I love Pablo Pineda, a Spanish man with down syndrome that has 2 college degrees he earned the hard way. No special curriculum, no pat ion the back. it took him more years than some people, but he did it! He holds a teaching job (yes, like a real one!).

So is there a cognitive difference. Yes, there is. Is how smart we are (meaning our IQ) what determines the value of our lives? Let's all hope not, because that means that there would be a lot more people with more "value" than us, and that is just not a right way of thinking.

Does Nichole have more challenges than her oldest sister? Yes she does. But, she doesn't have to do it alone, we are with her every step of the way, and it is not a burden, it is a pleasure, it is a joy, it is so different than I ever imagined it would be.


A news team of people with disabilities hits the election trail

Let Nothing Disturb You

Let Nothing Disturb You.
Let Nothing Frighten  You.
All Things Pass.
God Never Changes.
-St. Teresa of Avila

(As written by Father Kent O'Conner for his CD Saints.)

When I was pregnant with Cole, I listened to Father Kent O'Conner's CD Saints over and over again. The Magnificant, put to music and sung by him, soothed my anxiety over whether or not my baby would be born full term. It kept reminding me that God was in charge and that no matter what happened my soul should, must, would proclaim the greatness of the Lord.

There is another track on that CD. He set the words of St. Teresa of Avila to song: Let nothing disturb you/ let nothing frighten you/ all things pass/ God never changes. Although I didn't listen to that track as much as I the Magnificant, I did listen to it. It's soothing, like a lullaby, and sends another wonderful message: no matter what happens in life, God is always there, steady, strong. His love for us will never change.

It's been ages since I listened to that CD. Now in the car we listen to Radio Disney or Sandra Bonyton or VBS CDs. Saints has been packed away for awhile.

The other night I was alone in the car (never happens!) and didn't want to be alone with my thoughts. Something had happened and my thoughts needed to be distracted. I didn't want to listen to Radio Disney or VBS songs or (no way!) Garth Brooks (I thought I KNEW my husband! ;p) so I dug through the console and pulled out Saints. I flipped through it until I came to St. Teresa's song.

A few days ago, something happened that threatens to destroy my little family. I've held it together pretty well in the days since the realization that people are watching, judging, my children. But that night was the closest I have come to breaking down and sobbing.

I went to Mass (again, alone, but not for nefarious reasons... I had to do something and Adam and the children went Sunday) and sat in the front row. During the entire service, I clutched the hymnal so hard I left sweat marks on the covers. I tried to focus on the readings and prayers but all I could pray, over and over again, was "Lord, please take this cup from me."

I have prayed it before. I have prayed it deeply. This is only the second time in my life when I wished that this reality was a bad dream.

During Communion, a Eucharist Minister moved closer to my pew to hand out Communion to other parishioners. I was literally kneeling before the Body of Christ. I offered Him my suffering and sorrows. And I prayed, over and over again, "Jesus, I trust in you. Jesus, protect my family. St. Micheal the Archangel, defend us."

How I kept from sobbing, I don't know.

After Mass, I lit a candle in front of the statue of the Blessed Virgin, begging her to pray for me. I know she is. I can feel it and I know she has her arms wrapped around my children too.

I know you are wondering, Laura, what in the hell is happening? My family is under attack. Yes, I know it sounds tin-foil-beanie-ish but it's the truth. We are under attack and Adam and I feel powerless to stop it.

I know we are not truly powerless. "The truth will out!" as Arthur Weasley said. I have reached out to friends and others who can help us, people who can provide hard, solid evidence that we are fine. Good. Wonderful. They are willing to defend us.

St. Micheal the Archangel, defend us in battle.

There is a battle going on in my house, not with guns and bullets or physical weapons, but a spiritual battle and a battle with uneducated people. A battle that has much, much, much more at stake than the harm physical weapons can do.

During this, I have to trust that we will proclaim the greatness of the Lord, no matter what happens. I have to remember that God knows the truth, He is on my side and He will carry me through this. At the end of the God will be there, holding all six of us in His hands.

St. Joseph, pray for us.
St. Faustina, pray for us.
St. George, help us slay this dragon!
St. Micheal the Archangel, defend us!
Blessed Virgin Mary, be with us!
 
Jesus, we trust in you.

Defining Moment {a guest post}

Pinned Image
 
 
When Bridgie was born there was for me a very real and transforming moment.
 
In the middle of the night, in a dark hospital room, my husband asleep on the pull out sofa thing, my newborn daughter asleep in the bassinet.
 
It had been a long day that culminated with a beautiful baby girl with sparkling blue eyes and the cockeyed glance.
 
 
The big girl version of the cockeyed glance
 
 
 
Baby Bridgie brought something extra with her.  No not a chromosome or a medical issue. 
 
Bridgie brought peace.
 
 
Bridgie brought a long overdue peace to my hardened, burdened, confused heart.
 
 
It was instant that feeling of peace.
 
I saw her little face all swaddled up as they brought her to my side after the c-section.
 
 
I knew two things in that instant.
 
Down syndrome and peace.
 
 
They took her away and I marveled at what had just happened as I lay under layer upon layer of warmed blankets feeling the warmth of the morphine deep in my veins.
 
 
My human brain tried with all it's might to tell me to scream out, what's wrong with my baby!!!????
 
 
Over and over this scenario played out within me.
 
 
And each time, my heart answered with peace.
 
 
Late that night in the dark of the room.  I tried to play devil's advocate with my heart.
 
 
Down syndrome, what will it mean.  Will she live?  Will Erin and Eoin accept her?  Will she burden them? 
 
I tried with all my might in my post-morphine mind to make myself think logically.
 
Down syndrome is bad, right?
 
We don't want this, we can't do this, right?
 
I tried to push past the lucidity of the peace that enveloped me.
 
I tried to analyze this with my hardened, burdened, confused heart.
 
 
I succeeded in working myself up.
 
And as fast as I brought it on, it was gone.
 
The peace, the peace I could not fight.
 
What I knew was that I loved this little girl ferociously and nothing else mattered.
 
In this day there were many defining moments.
 
The loudest, most clarifying, and pervasive moments were the unspoken.
 
The nurses who said nothing about our baby girl who obviously had Down syndrome.  They knew it we knew it and we said nothing.
 
Looking back, I was selfishly keeping her and her potential diagnosis to myself because I did not care or want to hear what they thought or had to say.
 
I already knew what I needed to know.
 
LOVE.
 
There was the unspoken by my husband reeling in his own way.
 
Not a word of negativity, not a word of nonacceptance.
 
Only Love.
 
Somehow, we mangled through that first night each in our own cocoon.
 
Feeling alone, feeling scared, feeling what we did not exactly know.
 
What we do know is that we were not alone.
 
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***
About the author: Cindy Bryl, a mother to three perfectly crazy kids, tries to lead a simple Christian life in the suburbs of Maryland. Teaching her kids to have great manners, to be kind, and walk in the steps of the Lord while maintaining her sanity by continuing her own walk with the Lord through triathlon training. For more rantings and ravings about her 'five family' please check out her blog: Life is simple, it's just not easy.

Halloween party!






















































Hope to see you at the Halloween Party at the Ontario Science Centre Saturday, Oct. 27 from 6 p.m. to midnight to raise money for Change for Kids at Holland Bloorview.

"Ooo" on Down Syndrome and Sibling Relationships {a guest post}

"Ooo." I have no idea how he came up with it but that's what Marty calls his younger brother, Silas. He used to sign "baby" for Silas when he was an infant, bringing me "baby's" soothie when he cried, sometimes even a blanket. He'd pat "baby's" head gently and not so gently, maybe giving it a good rub before trying to poke him in the eye. Then Silas became big enough to sit and play with Marty. That's when "Ooo" emerged.
I didn't really know what it would look like for Marty to be a big brother. I don't know many kids with Down syndrome who are the oldest sibling; many families we know their 'surprise' is the baby of the family or somewhere in between. Marty was our firstborn. What was this going to look like? I tried hard to imagine Marty and Silas' relationship, but my image has since paled in comparison to the beautiful reality of brotherhood I see today.
 
1st time meeting "Ooo"
"Hold the Baby"
On the cold November morning Silas was born, I eagerly anticipated Marty's arrival to the hospital to meet his brother for the first time. My husband ushered him in and held him up to see Silas resting in his grandma's arms. Months beforehand we primed him, letting him carry around one of my old cabbage patch dolls, signed "baby" to him, showed him how to be gentle with it hoping it would get him used to the idea of a little person about to enter his life. Now with the newborn bundled before him, would he be able to make the connection? The room erupted in cheers after Marty peeked at Silas and signed "baby." He got it!

Marty soon wanted to play "Hold the Baby." I would put Silas in his lap for a few seconds, he would look down and laugh at him, then sign "all-done" and I would pick him up again. Over and over and over; "Hold the Baby" never got old.
Laundry fun
Perhaps Marty had an epiphany when Silas started becoming more interactive with him thinking "There is more to this kid than just crying, eating and sleeping--and funner games to be played!" Games like "Fetch" (a favorite) though it involves Marty taking toys (sometimes large enough to make a crash) from Silas and tossing it in the kitchen or down the hall. Silas happily plays along though and speedily crawls after whatever's been thrown for him to fetch. The two of them also play "peek-a-boo" around corners and take turns opening/closing doors for the other to open. There is the occasional "Sit on Brother" where I nearly panic at the sight of Marty sprawled across Si, then calm down and laugh with them as I realize that the squeals coming from the younger brother are those of delight and not anguish. (Oh, how boys 'play'!) When these funner games between the two of them had begun to take shape, suddenly Marty stopped calling Silas "baby" and he started calling him "Ooo."
Rise and shine!
The boys share a room together in our small apartment and every morning Marty climbs out of his toddler bed and into "Ooo's" crib to wake him--which my husband and I don't always appreciate, especially predawn, but it's become a happy morning ritual for the two of them and it's hard to stay upset. Usually we're clued-in to their wake-up routine by giggles crackling through the baby monitor. When I go in to get them they are jumping up and down in the crib like caged kangaroos ready to pounce at the morning. (Who needs coffee with this greeting?) Sometimes I end up getting Si out of bed before Marty wakes up. When that does happen, "Ooo" is the first person Marty asks for upon waking--making sure to check the crib and see if he's there before we leave the room.
 
Later in our morning, Silas and I see big brother Marty off to preschool and pick him up in the afternoon. In the backseat I am serenaded both ways by giggles and squeals as they make faces at each other. And when Marty comes down the hall to meet us at the end of his day, I get a quick "hello" and he peeks in the stroller to give smiles to his "Ooo"--who flashes all 3 cheeky dimples at the sight of him.
We share everything, even breakfast!
"Ooo." We don't know what it means. We call Silas by his name or call him "brother" around Marty, and neither of those words sounds like 'Ooo' to us. I like to think it is a term of endearment that began out of a relationship between two brothers who share more than just an existence together, but life together in precious moments like the ones mentioned above. In those moments I shake my head and wonder what in the world makes anyone believe that Silas is a sibling who 'suffers' or is somehow at a loss because he has a sibling with Down syndrome. Marty and Silas are brothers first and foremost; an unbreakable tie. Anyone who considers it 'suffering' to share in their brothers laughs, tears and triumphs all because of an extra chromosome are settling for far less than one of God's greatest gifts. That's the saddest thing I can imagine.
 
Silas adores Marty! He has to be wherever his big brother is--even if that is in the bathroom being potty trained (he's been peed on more than once but hasn't learned his lesson yet...). They are the the best of friends and teach each other so much. Marty taught him how to throw a ball and Silas taught him how to crawl without the 'pirate' effect (Marty used to prop one of his legs up and out when he crawled, pushing off with it). They balance each other so well: Silas is sugar--always smiling, always laughing and easy-going--and Marty is spice--a bit of sass and mischief with the right amount of sweet. God knew what gifts they needed in each other and paired them this way. I can't imagine them being apart.~*
 
 
***
 
About the author: Amber writes reflections and sometimes hysterical commentaries on the beautiful life that God has given her from her perspective as a mom, a wife, and a woman: She is a SAHM to two boys--Marty (blessed with Down syndrome) and Silas (blessed with a happy disposition) with another little sibling on the way! Her hands might be full, but so is her heart and that's what matters! She's been married 8 years to her fun-loving husband, Martin, who makes the journey that much sweeter! God is her solid rock and foundation whom without I would simply implode. Visit Amber's blog: Outnumbering the Sand

You can also find more posts about sibling relationships and down syndrome HERE.
 

Firework


What message do we need to convey?















At the Certain Proof screening last week, many said we had to be more vocal in telling our children's stories, and in making those stories mean something to the average person.

I later wrote a piece that touched on the negative picture of parenting kids with disabilities that often emerges from research on parent and sibling health, from media stories about families who are desperate for services, and from general attitudes about disability.

I had a most interesting discussion with a friend who suggested that this negative picture may be feeding the stereotype among doctors and the public that life with disability isn't worth living.

With tremendous pressure to contain health costs, she said, we may see an unexpected effect: doctors and government officials making a case for not saving as many children in the NICU, not putting in as many traches, and not giving parents a choice about raising a child or withdrawing care.

At a presentation on care for children with complex medical needs at the National Symposium on Integrated Care last week, it was noted that the most medically complex kids make up less than one per cent of Canada's child population (67 per cent), but eat up 33 per cent of health-care costs.

Last year, at a Canadian conference on the ethics of care for children with disabilities, we heard that about 20 per cent of the pediatric population in the U.S. generates about 80 per cent of its health-care bill.

It's not hard to see why people fear that the drive to cut costs plus research and media stories that paint a gloomy picture for families may make kids with complex disabilities vulnerable.

My friend noted there will be growing pressure on women to terminate when a diagnosis is made prenatally -- to save money and "protect" the family. The bioethicist Margaret Somerville wrote last year about a plan to make Denmark "Down syndrome-free" by 2030 by promoting abortions.

The focus on hardships in research and the media also affects families raising kids with disabilities. When you hear you're at increased risk for depression, anxiety, and, in the case of autism, divorce, and you read some of the literature about siblings, it's hard not to question yourself. Am I falling apart? Are my other children being damaged? Can I handle this? It's kind of a set-up for failure.

But you can't show any vulnerability. You're constantly fighting the stereotypes, trying to prove that really your child is valuable and really you aren't a complete mess as a parent or partner.

Parents of kids with disabilities want research because we’re told that we need evidence to influence policies on supports and funding. The reason all of the academics are in children’s rehab is because they want to make things better for families.

But do we have specific examples locally or elsewhere where services were put in place as a direct result of study findings -- as a way to mitigate stresses?

I can't think of an example in the time I've been raising Ben. Maybe one will come to me.

My friend was suggesting that we need more studies showing the value that disabled children bring to their families and communities.

There are studies, like this recent one in Child, Care and Development called Parent views of the positive contributions of elementary and high school-aged children with autism spectrum disorders and Down syndrome (pages 817–828) by Holland Bloorview researcher Gillian King.

As King writes in the study:

The findings should guard against the inaccurate assumption that there are no positive benefits in raising a child with a chronic disability, or that families experience unrelenting challenges and stresses. Parents may find it useful to know that other parents report many benefits, and the findings may reduce their uncertainty and fear regarding the journey ahead. The information can assist new parents to realize that benefits and enrichments will accompany the hardships, thereby providing a sense of hope. On a societal level, the present findings may encourage community members to view children with disabilities in a balanced light, not simply as a burden.

But do studies like this get any play in the media? I don't think so. Typically the media is looking for conflict or drama or even just simplicity. They don't do complexity and ambiguity so well. And that's what life is like raising kids with disabilities. It's full of beauty and joy and pain and challenge.

So how do you think we should be telling our stories? How can we create a climate where the public supports better services for families of children with disabilities?