Saturday, December 22, 2007
I sometimes wonder if it will be Aleksa's lot in life to sacrifice his own future even as he makes it possible for many other children like him to find homes? He has touched my heart so deeply, and so many other hearts, too. but still, no one claims him as their own. But they are donating money, they are signing on to adopt the children.
Andrea tells me the little boys are not as easily placed. Little boy, I would scoop you into my arms in a heartbeat if only I could. I will never stop wanting you to come home, wherever that may be.
Friday, December 21, 2007
the family I was working on for Christmas..the folkks who had had terrible bad luck, broken femurs, wrecked cars, etc...the dad was stopped, getting ready to turn into his driveway last night, had the 11 yr old with him. Some jackass decided to pass him on the left, took out the entire front of their last remaining vehicle! dad ended up in an ambulance, little boy all bruised up. WTH? Time for a break for these people, God. Now they are carless, although they had insurance. The accident ripped the front wheel right off the axkle. Totalled. GEEZ!
Sunday, December 16, 2007
Wednesday, December 12, 2007
An article in our local paper says it all:
Orrington deer hunt rifle raffle successful
By BDN Staff
Thursday, December 13, 2007 - Bangor Daily News
In the weeks before deer hunters headed into the woods this fall, Bob Bastey — owner of Bob’s Kozy Korner in Orrington — came up with an idea to spice up the season.
This wasn’t going to be your typical "big buck" contest, either. This one was just for the kids.
Bastey said he had noticed an alarming trend and wanted to address it.
"I’ve seen such a decline in hunting in this area in the last few years," Bastey said. "I thought it would be good if we promoted participation by young hunters and got them active, back out with their parents."
So Bastey ran out and bought a .308 Savage rifle with a scope, hung it on the wall of his store, and put up some posters.
Any junior hunter who tagged a deer at the Kozy Korner would have a chance at winning the rifle. And even those who didn’t would receive a free contest hat.
On Tuesday, Bastey proudly handed over the rifle to 13-year-old Nick Ireland of Orrington, who tagged a 110-pound deer Nov. 22.
"You should have seen him," Bastey said. "His father said, ‘It looks like someone won that rifle.’ Nick said, ‘Oh, really? I wonder who that was,’" Bastey said.
That’s when the store-owner walked up behind Ireland, tapped him on the shoulder and told him the good news.
"I said, ‘That would be you, young man,’" Bastey said.
In all, 19 young hunters entered the contest. Bastey said he got a lot of positive feedback from Orrington schools, who said the contest hats became a conversation-starter for many when hunters began proudly wearing them to school.
"When they went to school, they had the hat on. It was like, ‘Oh. Did you get a deer? How big was he?’" Bastey said.
Bastey said he thinks getting young hunters involved in the sport can reverse a trend, and a new generation can start educating increasingly reluctant landowners to allow access to prime deer-hunting areas.
"I think if we can get the youth back involved in it and show landowners that they are respectful, they aren’t going to destroy things, that’s a positive thing," Bastey said. "That was the whole process behind it."
The largest deer entered in the contest was a monstrous 245-pounder tagged by Christian LaCouture of Orrington.
Bastey initially bought the rifle himself, but received an unsolicited donation of $200 from members of the Bucksmills Rod & Gun Club in Bucksport to help defray the cost of the gun.
Bastey said the contest was a huge success, and he looked forward to holding a similar promotion next year.
"We’ll do it again next year," Bastey said. "It’s really a lot of fun. It’s great. I saw more kids during hunting season this year than I did in previous years."
The young men in this story arent strangers, dangerous thugs with weapons. They are our friends. David's, who has been a friend for years and years, his son won the rifle. His boy Nick will be raised to understand the power of that weapon, and the heritage of hunting. Sadly, his Uncle Dennis died a few years ago and wasnt here to see this. Dennis' daughter was the little one who designed our Buddy Walk shirts this year, a Kindergartner. The kid who tagged the big buck? His name is Christian, and you can probably see his picture in the photos from Jesse's paintball birthday. Great kid, helluva shot. I wonder what causes the big divide, where some kids have guns and use them for bad, and some have guns and use them to help feed their families? What change occurs in the handing over of that gun to a boy? Where are the fathers and the uncles to teach these young men how to BE men? It is a shame that in many parts of the United States, people would read this story and imagine young men with guns in an entirely different light. THESE young men are being taught the right way. Wether or not you believe in hunting, trust that they are being handed down values and morals that instill in them an awareness of life and a respect for their own power to take it.
My son proudly wears his BKK hat to school, and talks about his deer, and the guns he has, and his dad and he hunting together, and that moose trip up to Mooselookmeguntic Lake, and he even...gasp...DRAWS pictures with guns in them. Sometimes it seems we are in a whole other world, when I hear about kindergartners getting suspended for drawing guns. We are at war, and kids have to deal with that. And they cant talk about, write about, or acknowledge guns? Im awfully glad we live here, where wearing your BKK hat makes you the big kid on campus. I wonder how long it will take for people from away to take that from us?
time is getting away from me a bit. I need to get out and get some shopping done for my crew. Right now I am wrapped up in our local Christmas is for Kids program. Its a great program, I got involved when Kristin was in first grade! (She is in college now) The 1st grade teacher works on little fundraisers throughout the year with her class, then they count their money and they ALL go shopping at walmart. Imagine 20 first graders hopping off a bus in their Santa hats, grabbing carst, and storming the aisles, Christmas lists in hand...for OTHER kids. It is an awesome thing to see. usually, the news comes and some lucky kid gets to be interviewed, its a lot of fun.
This year, we have more families. It is cold here, lots of snow, and oil prices skyrocketing. LOTS of needs.
I mentioned the other day about the little girls that just wanted to be warm? Sometimes you just gotta go on faith. That afternoon, I met with other folks who are helping with this program, and started to hammer out details. We discovered that one of the kids was using bread bags on her feet...in 2007!! (I used breadbags, and man, we were POOR. I hate that this is still happening today with so much waste around us.) Anyway, little one with breadbags and sneakers, something had to be done. One of our folks was just so upset at this, she was in tears telling us about it. I had taken $200 dollars out of our Buddy Walk proceeds (first time we have EVER had a profit!) and intended to buy for several of our kids. I handed that woman 60 bucks, and told her to find boots for the three sisters. Anyone with kids knows 60 bucks might not go far, but it was all we had. Well....funny how things work out.
I left that meeting with $140 dollars remaining, and 3 children to buy for. I had some idea what I was after: PS 2 games, some Diego stuff, and some leapster cartridges. I stopped at a local Olympia Sports store, they were going out of business, they had winter coats, and I wanted to see how cheap they were. NICE coats, but even on clearance they were 69 bucks a piece. Columbia jackets, warm, perfect, soft pinks and pruples. But...210 plus tax I didnt have. I left there feeling kinda down, asked the store manager, who knows me because we shop there a LOT for my son Jesse, if he would keep an eye out for a dropmin price and call me. He said yes. I was walking into walmart wondering how I could squeak out 3 winter coats for the girls, on top of the toys. I bought the toys, then went to look at coats. They were decent enough, but this is MAINE, it gets cold here. The coats werent well made, somewhat light and flimsy. I imagined them standing at the bus stop in the biting wind, and just knew it wouldnt work. I paid for the toys with the $140 dollars. I had exactly 5 dollars and six cents left.
Then I ran into a friend. His name is Ned, and he owns the equipment rental place that we get all our Buddy Walk stuff from. NICE guy. we stood talking Patriots for a bit, sharing pleasantries. he asked me what I was doing out. I told him about the girls. And without a word, he handed me a one hundred dollar bill.
I dont know about you all, (all? I slay me) but I kinda believe in angels, and maybe even in "Santa". I think, at the very least, this time of year makes us better people, kinder people. I swear I saw an angel standing there that night. With a hug and a "Go, Patriots!" he was gone. And my mind was off, thinking COATS! Imagine that, though? he just trusted my word that this was a good cause, and handed me 100 of his very hard earned dollars? That is faith. And that is love.
I hurried back to Olympia Sports and asked exactly HOW well they could do for me if I bought three girls coats. The Manager smiled at me and went off to grab the coats, not cheapy little gonna-fall-apart-fast coats, either. He grabbed Columbia brand coats. Three of them. 2 that would fit the twins, and one for their big sister. I stood waiting while he thought. Remember, this guy had NO idea I had that hundred dollars, nor the money remaining from the toys. He looked up at me and said "For you, $105.60" One hundred dollars? Check. (Thanks Ned) Five dollars and 60 cents? Check...oops...I had five dollars and SIX cents left....I had to run to my car and scavenge 54 cents. But I did. And I came home with three coats. Two hundred ten dollars plus tax worth of coats.
PS I was given another family last night. Sometimes it seems unreal, the things you hear when you do this kinda thing. This story fits that bill.
~Dad hurt his back so bad he got laid off.
That was Monday of last week.
~On Tuesday, dad rolled his car in a vicious snowstorm. Totalled.
~On Wed, his 8 yr old son clibed to the top of the icy bleachers and thought he would jump off. Instead, he fell and broke his femur (oww) Surgery followed.
These folks have 5 little boys, including a severely developmentally disabled young man. They didnt ask for help, but someone thought they might need it. I stopped by their house this morning to say "hey, we know how hard this has been, what can we do to help?" I got mom to agree to let us do something for the kids. I heard later that their pastor called them to ask how they were, were told that someone had stopped by, and they were very thankful, and in tears relating the story. Thats an awesome feeling. Imagine the worries they have this time of year? Imagine that it is FIRST GRADERS who will make this happen? First graders, 6-7 yr olds. AWESOME. The lessons they have learned!! Every now and then, someone tells me thank you. Im just the messenger. Thank the KIDS!!
she is, for the moment, nameless. (Or better said, she has MULTIPLE names, poor dog!) She goes from Maggie (Daddy) to Bella (me) to LoLa (Kristin) Bruschi (Jesse and Ciarra) we will have to settle on a name soon. Ciarra adores her, but then we all do. She is an 8 week old Boxer/Lab mix. Much smaller than we expected her to be, she is the runt of the litter. Snuggly and sweet, she has only ha 2 accidents since coming home last Friday. Without further adieu...
Tuesday, December 11, 2007
I "ran into" an old online buddy today, her name is Rene, well...PRINCESS Rene. I just adore this woman!! We caught up a bit, and she oohed and aahed over Ciarra (as always) and then...this go check her out! But um...shes a little crazy, a lot wonderful, and...totally and completely smitten by my girl. Always has been..I expect someday to be accosted by a Princess who will fly right by me and grab up my little darling with the express purpose of checking out her EYEBROWS!! LOL Love ya Rene..and we sure missed you.
Monday, December 10, 2007
Shannon, at GabisWorld has gifted me with a very special award. It is the Spirit of Christmas award.
This award is for those who talk about and show the spirit of Christmas in their blogs.
What is the Spirit of Christmas you ask?
Quite simply it is those that have a generous and giving nature. Those who care about others. Those who have a kind word to say or a broad shoulder to lean on in the times that others need that. Those who display the "Spirit of Christmas".
Please pass this on to someone that has touched your heart with their kind and giving and caring nature.
The code that you need to place of your blog and the one that you pass on is available HERE on Santa's very own blog:
Shannon, thanks for thinking of me. As you know, I am trying hard to keep some publicity on Reece's Rainbow's Christmas Angels program.
I would also like to ask for your prayers regarding some local families who we are trying to help this Christmas, as well. We have picked 4-5 families to help, and then last night I heard from the Fire Department Auxilliary (with whom I am working to identify and help families) that there was a request for aid from another family. Twin 8 yr olds, asking only for "a space heater for our cold room". Obviously, the FD cant get them a space heater, the liability would be astronomical. But that doesnt mean we cant help. I have put out an all call for folks to help weatherize their old trailer. Pray that someone comes through on that with men and materials to keep 2 little ones warm this winter? I cant explain much more, but I will tell you that one of the kids has the voice of an angel, and if it werent for poverty, would likely be looking at voice coaches and a real shot at a future. I made a short video of her singing at a school concert. Please send up a prayer that they will be warm this year.
Anyway, passing this special torch to these deserving bloggers:
Cindy at Our Life, a fellow Mainer. Her blog is a respite for me, the music and the words, the pictures...they all remind me to see the world through the eyes of my children. I love to go there just for the calming music and the aura, as I told her last week she must be a great hostess in real life, because her blog is warm and fuzzy and comforting. Go, visit.
Meredith at Cornish Adoption Journey for sacrificing her own fundraising to help others, and for wanting to give Christmas to every orphan in the world.
Shellie at Life As Household 6 who tirelessly works for kids with DS. Her new son Xander is a lucky boy indeed. I have enjoyed watching their story unfold in bits and pieces.
Thursday, December 06, 2007
and I have been second guessing myself a bit. I have been following Pleo for over a year now, anticipating this...thing...that the inventors would have us believe is...almost real. Ok, so Im a critic, and I have had moments of serious doubt about my own intelligence. It IS, after all, just a toy. A really cute, incredibly...intelligent?...toy. I wavered, I waffled, I whined. I worried. Lotta money. A. Lot. Of. Money. A few of the new videos that I have seen seemed to show it as being a little noisier than I would have liked. There is a delay in one of the most exciting features, which we are told will be available for download...soon. In pleo time, soon can be very subjective. But still, I have been excitedly tracking Pleos journey from China, to Alaska (the North Pole?) and Ohio...havent checked where he is today but I will. Then I saw this video, which was actually kind of hard to watch. Which really makes me wonder if my sanity has slipped away. Because in the video, testers are beating up Pleo. They are choking him, slapping him around, stuffing him in bags...abuse, Pleo abuse. There should be a hotline for that. What? You dont believe me? Watch the video. Then tell me if you dont feel like protecting this little mass of computer chips and wires, big blue eyes and a voice full of...terror. Ok, ok, Im crazy. But it IS terror. he is afraid. He hangs his head, he responds to the abuse as you would expect any...living...thing to do. They choke him and he makes a CHOKING sound. And you want to reach in and rescue him. Hurry home, Pleo, you will be safe here.
The following Video shows graphic abuse of a defenseless...robot
Monday, December 03, 2007
I still have not chosen my candidate!!!!! ARGH! I always thought this would be easy for me, but nope. Found the link above, which sort of quizzes you on what issues matter most. There are 20 issues I think, you give each a certain weight by giving them plus or minus numbers, you only have 20 points to start, so you have to think about what issues MOST matter...which sort of leaves you a one issue voter...unless you repeat the quiz to give more weight to other issues. I was surprised by who I align with, even after revoting several times, giving different weight to various issues. It doesnt just tell you who you line up with, if you click their names it also takes you to a comparison chart that measures your togetherness (or not) and shows you their record/thoughts on those issues. Pretty cool...although I still dont know who Im voting for for sure!!
Sunday, December 02, 2007
Thursday, November 29, 2007
Ciarra's school Christmas concert is in a few weeks, and she has a role playing the recorder. EEK! She brought it home tonight, thank goodness big sister knows how. They practiced for awhile then came and got me, of course I recorded it. Im SO psyched, she has the general idea down!! Lotsa practice needed, but yaya...shes so proud of herself!
please share this on your blogs, etc, and help get the word out
Wednesday, November 28, 2007
Saturday, November 24, 2007
Here is the beginning of my post. And here is the rest of it.
I have always had a visceral reaction to hearing the term "T21" used to describe Down syndrome. I recoil at it actually, although I recognize that my feelings are not the same as those of other parents of kids with Down syndrome, like my daughter. T21 to me denotes something cold and clinical, but it goes deeper than that. Until today, I had always just accepted that feeling, and never bothered to explore it further. WHY does it make my teeth grit together and anger come pouring out of me? Today, it suddenly struck me.
You see, I am a history buff, and a voracious reader. I remember as a very little girl reading books about the Holocaust and the children who did and did not survive it. I was fascinated by their courage, heartbroken by their tragedies. My favorite book as a little girl was "Escape From Warsaw", I have no idea who wrote it, but I would love to read it again. I remember the characters, though, big sister Ruth and brother Edek...(I have forgotten their little sister's name.) In the story they wander through the war, trying to get back home. I think I grew up with a very powerful sense of empathy in large part because of my beloved books. "I Am David" was another. In the books, the children were always trying to get back to families who adored them. I read lots of other books that did not have happy endings, most were true stories, they were all devastatingly difficult to comprehend. All of them sought to explain the damage inflicted on people whose only crime was being born a certain way, whether Jewish or disabled, or a twin.
Long before I had Ciarra, long before DS became a personal term to me, I had read the horror stories about Josef Mengele and his cohorts Philipp Bouhler, the head of Hitler’s private killing machine, and Dr Karl Brandt, his personal physician.
Action T4 (German: Aktion T4) was a program in Nazi Germany officially between 1939 and 1941, during which the regime of Adolf Hitler systematically killed between 75,000 to 250,000 people with intellectual or physical disabilities. Performed unofficially after 1941, the killing became less systematic. The codename T4 was an abbreviation of “Tiergartenstraße 4”, the address of a villa in the Berlin borough of Tiergarten which was the headquarters of the General Foundation for Welfare and Institutional Care.
In May 1939, when Hitler had already determined to attack Poland in the summer or autumn of that year, the parents of a severely deformed child born near Leipzig wrote to Hitler seeking his permission for their child to be put to death. Hitler approved this, and authorised the creation of the Reich Committee for the Scientific Registering of Serious Hereditary and Congenital Illnesses, headed by Karl Brandt, his personal physician, and administered by Herbert Linden of the Interior Ministry and an SS officer, Viktor Brack. Brandt and Bouhler were authorized to approve applications to put children in similar circumstances to death.
This precedent was used to establish a program of killing children with severe disabilities from which the guardian consent element soon disappeared. From August the Interior Ministry required doctors and midwives to report all cases of newborns with severe disabilities. Those to be killed were "all children under three years of age in whom any of the following 'serious hereditary diseases' were 'suspected': idiocy and mongolism (especially when associated with blindness and deafness); microcephaly; hydrocephaly; malformations of all kinds, especially of limbs, head, and spinal column; and paralysis, including spastic conditions." The reports were assessed by a panel of medical experts, of whom three were required to give their approval before a child could be killed.
Various methods of deception were used to gain consent – particularly in Catholic areas where parents were generally uncooperative. Parents were told that their children were being sent to “Special Sections” for children where they would receive improved care. The children sent to these centres were kept for "assessment" for a few weeks and then killed by lethal injection, their deaths recorded as "pneumonia". Autopsies were usually performed, and brain samples were taken to be used for medical research. This apparently helped to ease the consciences of many of those involved, since it gave them the feeling that the children had not died in vain and that the whole program had a genuine medical purpose.
Once war broke out in September 1939, the program became less rigorous in its process of assessment and approval. It expanded to include older children and adolescents. The conditions covered also expanded and came to include "various borderline or limited impairments in children of different ages, culminating in the killing of those designated as juvenile delinquents. Jewish children could be placed in the net primarily because they were Jewish; and at one of the institutions, a special department was set up for 'minor Jewish-Aryan half-breeds'". At the same time increased pressure was placed on parents to agree to their children being sent away. Many parents suspected what was really happening, especially when it became apparent that institutions for children with disabilities were being systematically cleared out, and refused consent. They were threatened that they would lose custody of all their children, and if that did not suffice the parents themselves could be threatened with call-up for "labour duty." By 1941 over 5,000 children had been killed.
T4 was the name of the program that set about dehumanizing children with Down syndrome in the eyes of the community. It's goal was to make the children seem so different, so expendable, that they were defined by their clinical diagnosis. They were expendable. T21 is the clinical name given to children with Down syndrome today. Many of the parents who prefer the term do so because they dislike the term "Down syndrome", for although Down was the name of the Doctor for whom the syndrome is named, the term denotes a negative-sounding description that doesn't sit well with many.
fast forward to today. Princeton University has as it's ETHICS chair a gentleman by the name of Peter Singer. The esteemed Mr. Singer has this to say about Down syndrome:
His 1994 book Rethinking Life & Death, whose aim is to articulate "a social ethic where some human lives are valued and others are not" (p. 112), recapitulates the arguments in favor of selective infanticide outlined above. There he endorses the view that "it is ethical that a child suffering from T21...should not survive" (p. 123) because "the quality of life of someone with T21 [is] below the standard at which medical treatment to sustain the life of an infant becomes obligatory" (p. 111; in Singer's terms "treatment to sustain life" doesn't refer merely to surgical intervention but to simple feeding as well). This "quality of life" reasoning is sometimes cast in more colorful terms; in Should the Baby Live? Singer quotes, entirely approvingly, the grandmother of a Down syndrome child: "Had the poor little mongol been allowed to die, as he so easily could, my daughter might have had one or two healthy children in his place" (p. 66). Singer goes on to suggest lethal injection "in the case of a Down syndrome baby with no other defect" (p. 73).
Today, in America, our children are raised at home. We keep them safe with us, and out of the hands of those who would do them harm. For the most part, they are treasured members of society. But there are still those who believe that the best place for a kid with Down syndrome...T21...is dead. Abortion rates have skyrocketed. Prenatal diagnosis has taken the place of the institutions and killing fields like Hadamar. But just out of reach, there is an unspoken awareness, an imperceptible threat...the world is not always welcoming for children like mine. Ciarra survived the prental time, when 90% plus of kids prenatally diagnosed are exterminated. She is thriving, loved, and welcomed in our world. By most everyone. But there is still a sense of urgency in me, an awareness that her life is not welcomed by many people. An awareness that terms like "T21" can dehumanize her and seperate her. And in me, there is the awareness that the world is not always good and decent, a knowledge in the core of me that T4 and T21 are not so very far apart, after all.
Sunday, November 18, 2007
Up to $2100 now in 2 1/2 days :) You rock!
There is yet ANOTHER way for you to help, takes 2 minutes, and donates $5 right now to reece's Rainbow, without costing you a penny!
IGive...you give...we can ALL give to Reece's Rainbow kids!
I was surprised to see just how many of the stores I shop at online have the IGive capability. make sure you download the iGive thingy (thats a technical term) on the 2nd page, after you register. Any purchase you make...and Christmas is coming!....sends RR about an average of 2% of your purchase. If you spend 100 dollars, 2 bucks goes straight to them! How much easier could it get? Black Friday is coming!
Andrea Roberts, Executive Director
Reece's Rainbow Down Syndrome Adoption Ministry
Saturday, November 17, 2007
Have you been touched and heartbroken by the stories coming out of Serbia about the kids with Down syndrome who have been left to die in orphanages and institutions? I have.
Here is the original report
And here, again, is the little boy who has captured my heart. (Who is not, by the way, listed for adoption at Reece's Rainbow, that I am aware of.)
That little face, so familiar, haunts me. I cant sleep, I cant do anything but think. HOW can we do something for these children? I have been racking my brain. I am not rich, I'm guessing most who visit here aren't, either. So what can we do? Well, I have a few ideas.
One is, we need to spread the word. The blogging community is SO big. We are a powerful force. Surely, someone speaks the languages that we need to translate our stories of our own children into hope for the parents there making these awful decisions? Most of these countries are not aware of the potential for kids with DS. We can change that. But we need an army of us to translate that hope into their languages. And we need to get the word out to the people, to try to stem the tide of these children into the homes and orphanages. That's a long range plan. And I welcome your thoughts on it.
Second: we need to find a way to stop some of these children from being moved to the asylums, where they will NOT ever again have the chance to be loved. In many places, kids 4 and over are moved and are no longer retrievable. Once they are moved, we may as well consider them dead. Can we live with ourselves if we turn our backs, watch them be tied to their beds for YEARS at a time, never loved? Or do we do something...anything...even if it is just lending our voice to the call for help? I have a few ideas here, too. And I think this season of love, hope, and renewal is just the time to do it.
Many of us have, in the past, done an annual Christmas exchange within our own DS online communities. It is fun, and it certainly reminds each of us that our online friends are out there, somewhere, real people with real families. I would like to suggest that this year, in lieu of sending one another a tangible gift, that we draw names, and then each of us that has drawn a name make a donation, on behalf of our partner, to Reece's Rainbow. However small, 3 dollars, 5 dollars, whatever...the real life results of us doing this could literally save a life. The money goes to a fund that will help families bring home some of these kids in other countries who will be sent to asylums for LIFE if we don't act.
Aleksa is just one of those children. NOT unreachable. NOT unsaveable. Just...waiting.
In Russia, as I understand it, once a child is sent out of the baby houses, they are NO LONGER ADOPTABLE. In other words, once they leave, they will spend the remainder of their lives in an institution, perhaps tied to their beds, no toys, no human touch, no love. I urge you to look carefully as you make your choice. The kids in red are those whose need is most urgent. They aren't the littlest, cutest ones, but we can change their lives FOREVER. There are families out there who want them, but cant afford the fees.
The kids with the biggest needs:
Daria (next to last row, second from rt)
Andrei (4th row from bottom, second from right)
Andruis (Row 2, child #3)
ANY of the children w.o.pics
Jovan and Aleksa (Row 1, 1st and 4th children)
Nadia (5th row from bottom, first child on left)
Denis (5th row from bottom, second from left)
Norah (3rd row from bottom, second from rt)
With your sponsorship gift of $35 (or more), Reece's Rainbow will send you a beautiful photo ornament of your sponsored child(ren) to hang on your Christmas tree (available until December 15). For some of these children, this may be the closest thing to Christmas that they ever know.
If you want to join this unorthodox "gift exchange", please copy this post and spread the word far and wide. If you can make a button, if you know HTML coding, please tell me that, too. We need to make this easy for people to do. Also, we need to spread the word far and wide..many of you visit other, non_ds sites. Share it there, too.
PLEASE click here to make your donation. Lets unite this community on behalf of these children.
PLEASE REMEMBER: we MUST be cautious when we blog or post about these children. Their countries do not need to be embarrassed. There is good to be said, they ARE letting these children go home to families. Try to remember to not be disparaging, but to make a point of saying that they ARE working with the families, and want the best for these children. It is absolutely imperative that we do not jeopardize any of these adoptions.
ANOTHER IDEA-THANKS JEN!!
I wanted the gift we got for you this year to truly reflect your love for children. Another mug? Cookies? No. This year, with the plight of the orphans in Serbia and elsewhere around the world so fresh in our minds, I decided to give a monetary donation in your name to an organization that is trying to save as many lives as possible.
Reece's Rainbow seeks out children abandoned in orphanages and institutions, children with Down syndrome just like ______________. Seeing their faces, lives wasting away tied to cribs and starving, with no love and attention, touched me beyond words. And so, we have made a donation in your name to Reece's Rainbow. All over the world, there are families who would go whisk those children out of there and away to warm, safe homes, if only they had enough money to meet adoption costs.
Children who reach the age of 4 and have not yet been adopted are sent away to institutions, with no hope, where they will languish for life, untouched. Just as they would have become eligible to be given the gift of the influence of a great teacher like you, their lives are ended. We are joining hands with other families around the world in trying to reach these children. We know that you became a teacher because of your love for children and your desire to change lives. We hope you will agree that this may be one of the best legacies any teacher could ever leave. Thank you, on behalf of the children.
Friday, November 16, 2007
in my digging today to uncover more of the story about the Institutionalized babies with DS, I came across another documentary DVD for sale. It is called "Where's Molly", it is about a family in which the little sister is sent away to an institution, leaving behind a big brother desperate to know where his beloved sister has gone (she does not have DS)
The trailer is a taste of what will happen if you watch the movie, its hard not to cry watching him choke up.
"Where's Molly?" Jeff Daly asked his parents one gray spring afternoon in 1957. The six-year-old Jeff stood staring at the empty chair where his little sister usually sat. After a brief silence, Jeff's father answered, "Molly's not here anymore, but she's fine. It's nothing for you to worry about. Forget it and eat your supper."
Over the next several months, when Jeff persisted in asking, "Where's Molly?" he was sent to his room. "She lives somewhere else now and she's happy," his mother firmly told him. "You're not to talk about this anymore." Jeff eventually stopped asking about Molly, but deep down never forgot her.
read more about them here
A video about them
SHAWN LEVY - The Oregonian March 09, 2007
The Dalys of Astoria were the perfect '50s family: Their home was modern and neat; Dad was an executive at a cannery; Mom socialized with the other smart ladies in town; and they had two beautiful kids-- bouncy big boy Jeff and Molly, the little sister he adored.
But the picture book dream was shattered when it became clear that something was wrong with Molly's development. And so, following the best medical advice of the day, Molly was institutionalized at the Fairview Hospital and Training Center in Salem. What's more, the girl was, by Mom's edict, forgotten; the Dalys had another child -- a healthy boy -- and Molly receded into memory.
Well, Jeff never entirely forgot his sister. And after his mother died, and then his father, he discovered evidence of her whereabouts and set about tracking her down and, finally, reuniting with her.
His story of loss, confusion and reunion is told in "Where's Molly?" -- a handsome and overwhelmingly emotional film that played at the recent Portland International Film Festival and returns for a regular engagement at Living Room Theaters. And I don't care who you are or how tough you think life has made you: This film will get you blubbering like a baby. Although Jeff's own quest is moving, it's the story of his dad, Jack, that most amazes. He looked like a stereotypical square peg, and he seemed to acquiesce to his wife's edicts against the mere subject of Molly. But he frequently drove from Astoria to Salem to visit his daughter. And when authorities asked him not to come back because the visits upset the girl, he devised a means to see her anonymously: as one of a troupe of traveling clowns. The notion that this white-collar, straight-arrow man would don makeup and a wig and crazy clothes just so he could stand and see his little girl is a titanic instance of selfless love. And the film hits you with more than one such shot to the gut.
Rendered in truly gorgeous photography (Daly is a professional video cameraman), the film in its final passages gets a little bogged down in advocating the rights of family members of the institutionalized. But it never stops wringing your heart. It's the rare movie that makes you want to rush out and hug everyone you love.
ELIANNA BAR-EL - Willamette Week 2.14.07
When Jeff Daly was 6 years old, his younger sister, Molly, just shy of her 3rd birthday, was taken away. In the mid-'50s in the small town of Astoria, Ore., it was a disgrace to have a child anything short of perfect. Molly wasn't perfect.The family doctor delivered a shocking and damaging verdict: Molly was "profoundly retarded." According to one family friend recounting details of the culture, "You didn't educate these children, you warehoused them." Where'sMolly is a poignant documentary recounting half a century of time lost between a brother and a sister, and the measures taken to ensure this kind of story never has to be told again.
DAWN TAYLOR - Portland Tribune March 2007
The closing of Salem’s Fairview Hospital in 2000 opened up a number of unpleasant cans of worms – in particular, information about the thousands of children and adults who’d been warehoused there for decades after being diagnosed with disabilities.
Many patients grew up in Fairview without knowing that they had any other family. Filmmaker Jim Daly’s search for his younger sister, Molly – whisked away with no explanation in 1957 – led to this superb documentary that chronicles not just his discovery of his long-lost sibling, but the appalling way that society has traditionally treated citizens with even mild disabilities.
Archival footage of Fairview (opened in 1908 as the State Institution for the Feeble-Minded) and interviews are interspersed with Daly’s recollections of how his search led to finding Molly in a Hillsboro care home. Their reunion is tender, and Daly’s film is both heart-wrenching and educational.
PORTLAND INTERNATIONAL FILM FESTIVAL
Where's Molly? Since 1957, when he was six years old, Jeff Daly kept asking that question. When his sister Molly was three years old, she suddenly disappeared from their "perfect" family home in Astoria, Oregon and never returned. His parents refused to talk about her, or explain her disappearance. Daly was left to wonder about and mourn the sudden and mystifying loss of his only sister. It took him 47 years to find out that his sister was sent to Fairview Hospital and Training Center in Salem. For decades up until 2000, it was the common destination for children and adults with developmental disabilities. His sister was one of thousands of "Molly's" placed in institutions across the country. Often, they were forever separated from family members by the belief that closing the door and not looking back was best for everyone. It was not until the death of his parents that Daly discovered that he has a sister and that she was still alive, prompting a search and reunion he could never ha ve imagined. Daly's personal, heart felt film tells a moving story of family reunification, changing attitudes about the care and rights of the mentally disabled, and of the hope that for other families, the value and meaning of life is not judged by capability, but by spirit and love.
MARC MOHAN - The Oregonian
"WHERE'S MOLLY?" -- It's one thing to be aware, in a general way, of the archaic attitudes toward, and corresponding treatment of, mentally disabled Americans in times gone by. It's another to follow one heart breaking story out of the thousands that could be told. Jeff Daly's documentary "Where's Molly?" delves into his own family's secrets and lies to provide a microcosm of the confusion and pain caused by ignorance and fear toward the mentally ill.
In 1957, when Jeff was 6, his sister Molly, three years younger, was institutionalized by their parents at the Fairview Hospital and Training Center in Salem. Doctors told them that she was severely retarded and had no chance of anything like a normal life, so the Daly family excised Molly from its memory.
Fast-forward nearly 50 years, and, following the death of his parents, clues emerge that send Jeff and his wife on a quest to determine if Molly is still alive. The movie has about as happy an ending as possible in this situation, but it's still a story of a family destroyed by their society's inability to treat a retarded child as anything but an object of shame. And, though Fairview is closed now, it's still a story that's surely anything but unique.
The Oregonian - Friday, March 09, 2007
"Where's Molly?" TV videographer Jeff Daly's film tells the story of how his Astoria childhood home was shattered when his younger sister was diagnosed as develop mentally disabled, institutionalized in Salemand forgotten at the insistence of his mother. Decades later, his nagging memories of the playful little girl lead him to find her living in a group home in Hillsboro. It's an emotionally staggering and beautifully photographed film that loses a little in the final minutes, when it turns from memoir to political tract. But thatdoesn't really matter. If there's a heart pumping blood inside your rib cage, you'll never forget this story.
“Rendered in truly gorgeous photography, it never stops wringing yourheart.” – THE OREGONIAN
In this extraordinary and moving documentary, Jeff Daly delves into his own family’s secrets and lies to provide a microcosm of our treatmentof the mentally ill. In 1957, when Jeff was 6, his severely retarded younger sister Molly was institutionalized by their parents and excised from the family memory. While his parents refused to talk about Molly, Jeff was left to wonder and to mourn the sudden and mystifying loss of his only sister. Now, 47 years later, Jeff finally learns the truth to the family secret that kept him from his sister in a reunion that will warm your heart and give you hope for the future of “less than perfect” people like Molly. A handsome and overwhelmingly emotional film, WHERE?s MOLLY pulls you in close. It’s the rare movie that makes you want to rush out and hug everyone you love.
Wednesday, November 14, 2007
Kulina Children’s Institution is located 3 hours drive from Belgrade, at the top of a narrow, mountainous road, barely accessible in winter months. 580 babies, children and adults live in this remote facility, which is woefully understaffed. According to the director, all have developmental disabilities or “mental disabilities” and some have physical disabilities as well.
Nurses told MDRI that 250 children and adults “cannot leave their beds and are totally immobile” and another 250 who are mobile are not toilet trained. In the absence of any standards, some children and adults are subject to a life-time of restraints. Ward staff at most institutions report that everyone is taken out of restraints now and then. As the chief nurse explained at Kulina, staff are overwhelmed and have no choice but to continue to tie down the same “difficult” patients over and over again.
MDRI investigators found that many children and adults permanently restrained at Kulina were referred to as “auto-aggressive” or self- injuring. The problem of self-abuse is reportedly a problem with 40% of all of those living in Kulina and occurs at an even higher rate with children. Self-abuse is a well known phenomenon which occurs when there is a lack of human contact or stimulation. Loving attention is the best way to prevent self- abusive behaviors, but once this practice develops specialized treatment is necessary. 8 Without such treatment, abuse “may cause permanent and disabling tissue damage and may sometimes be lifethreatening.
For example, severe head banging or hitting may lead to cuts, bleeding, infection,
retinal detachment, and blindness.”9
I walked into one room after another, a ward for children 4 to 7 years old. It
was the middle of the day and children were confined to their cribs. There was
no staff in any of the rooms, no toys, no music – nothing. One boy with Downs
Syndrome was hitting his head over and over against the metal crib. Another
was tied to the crib in 4 point restraint and still another, with a deep gash on his
ear, had his arms tied to the side of the crib – MDRI investigator
MDRI found several children tied into chairs. In one room, devoid of any staff and filled with toddlers all in cribs, a lone child sat crying, tied to a chair in the corner. In still another room, two small boys were tied at the ir wrists and waists into chairs. One of them had bandages over his ears. According to staff, he had tried to rip his own ears off. Experts in the field of disability agree that hitting, scratching and biting oneself is a reaction to mind-numbing boredom and lack
of age appropriate stimulation and human contact.
So, what do we do? How do we turn our backs and NOT try to help? Continue reading... On the following link, there is information about an International attempt to give more rights to those with disabilities. Globally, there are millions of disabled people out there, suffering from a lack of laws to protect them. On the right side of that page is a wat to blog the information, several petitions and other ways to help.
Why do we need the UN Convention on the Rights of Persons with Disabilities (CRPD)?
People with disabilities worked with the United Nations to develop a treaty to protect their human and civil rights. The CRPD bars discrimination on the basis of disability, and requires nations that ratify the treaty to ensure that the rights of people with disabilities are extended and enforced “on an equal basis” with the rights of people without disabilities.
Human rights treaties, also known as conventions, put into words commonly agreed upon human rights shared by human beings around the world. Most treaties are developed through the United Nations and other international bodies.
For countries that sign and ratify them, conventions become legally binding international law. Some apply to all human beings while others focus on the rights of specific populations such as women, children, or refugees.
The existing core human rights treaties are rarely used to enforce the human rights of people with disabilities. They don’t adequately address the physical, social, cultural, economic and legal barriers to inclusion of, and participation by, people with disabilities in all aspects of life.
We can also move now to get help for these children and adults in this story.
SERBIAN AND MONTENEGRIN EMBASSY AND CONSULATES IN THE UNITED STATES:
Embassy in Washington, D.C.
2134 Kalorama Road
Washington, DC 20008
Tel: (202) 332-0333
Fax: (202) 332-3933.
Consulate General in Chicago
201 East Ohio St., Suite 200
Chicago, Illinois 60611
Tel: (312) 670-6707
Fax (312) 670-6787
Email at firstname.lastname@example.org .
Monday, November 12, 2007
Well, Ciarra has been pretty sick, with what we thought was the monthly sinus infection crap. We have been dealing with it since she got her tonsils out in June of 05. Recurrent nasties, she wakes up with patches of disgusting...stuff...all over her throat and mouth. We clean her all out and she then just has this nasty nose and bulging eyes, she sounds like she needs to blow her nose badly. Well, this time life decided to toss a bit more our way. It should be noted that Ciarra has had ruptured eardrums in the past which have left really large holes in her ears. Holes that dont want to heal. She had tonsils and adenoids out 2 years ago, and we thought maybe this would end. But it only made things worse. Not sure if she got something AT the hospital, but...it just wont go away. ENT tells me it has NOTHING to do with her having DS and everything to do with my family's known antibiotic resistance/reactions. We have tried everything.
Anyway, just about 2 months ago, we got the wonderful news that the perforations in her ears are healing, coming slightly closer to the size she could avoid surgery with. We had been praying for that. Even with the improvement, the hearing center wanted to discuss hearing aides. Our ENT said hold off, the holes were closing, give them a BIT more time.
This morning we discovered that Ciarra's ears were bleeding. You have no idea how hard and fast my heart hit my shoes. This is bad on many levels, not the least of which is...shes ON an antibiotic (omnicef) and it is apparently not touching this bug. Beyond that, she is hurting, and a bit freaked out. So the "really good" anti isnt helping, and we are getting desperate. My Ped, who I adore, chose today to joke around about "I dont know" regarding the answer. Im afraid I was a bit crabby in my reply. I should add that on my way in to his office, we received a call that our business (a small garage) had been vandalized AGAIN. 4th time this year. This time, broken windshields. I was not in a good mood, to say the least.
So he prescribed Cipro, which apparently, is a big gun. It will kill most staph, just in case this IS staph. (Which cultures had shown it wasnt, but we recultured Friday)
Did I mention this is a holiday, and the ENTs office is closed? So is the lab, so no culture report is available. Oh, and our pharmacy had no cipro, so we had to drive into the city (thats TWO towns away, for those keeping score) to get it. I drove through McDonalds for Ciarra, and bought her an ice cream to make her smile. Poor girl is a trooper.
We see the ENT tomorrow. I am not sure what to think. It is painfully obvious that the perforations will now be bigger...again....after 2 years of willing them to close. We are likely looking at surgery, which our Doc says would need to be done in Boston, because she is too small. It involves putting fine pieces of rice paper over her ear drums and grafting them in with skin....sounds like fun, huh? *I* just want to know WHAT is causing this thing? what germ are we dealing with? What is this CALLED? Surely something so persistent has a name? I just want to know what Im dealing with, because "Here Miss Harmon, put her on another antibiotic and call me in the morning" is not working for me. And you know what? I have been known to tell a doc an antibiotic was NECESSARY, when it was. I havent been wrong yet, the kids various ills usually respond to an anti when I say they need one. I know my kids. But this time...I just dont know. This time it is BAD. This time its happening while she is on omnicef. HOW? Hopefully tomorrows culture will tell us more. I think Im gonna host a protest and chain myself to the ENTs desk till we get an answer Ciarra can live with.
Sunday, November 11, 2007
I was driving to work today, and had the radio on Clear Channel, listening to Glenn Beck, which I sometimes do. This time I caught the beginning of a show that absolutely blew my mind. I would like to share why with you here:
Radio host www.glennbeck.com/home/index.shtml Glenn Beck hosts a morning show on which a game called “More-On Trivia” is played on Fridays during football season. The segment was originally named “Moron Trivia”, however, Glenn was feeling guilty over calling the clerks morons. The title of the segment was changed to “More on Trivia” (also written More-on Trivia or Mor(e)on Trivia) in 2003. (A site that tracks the show is here: http://www.moreontrivia.com/ ) During football season, mostly on Fridays, calls are made to convenience stores in the cities where each NFL team is based to speak to a “Shelf Replenishment Engineer”. Each city it pitted against the other. Four questions are asked per quarter. The question range from politics to “What color is the sky?” The city with the most points indicates the show’s pick for the game in question. Inevitably, the answers are wrong, or given by folks with limited command of the English language.
The game in and of itself is despicable, but the song that opens the show is far worse. It is a song apparently sung by Hank Williams Jr to the tune of the “Monday night football” song, (“do you wanna party?”) in which the mentally retarded are mocked and demeaned. The song can be heard by going www.moreontrivia.com/whatisit.php here, at the bottom.
“Are you ready for some morons?
An idiot party
We’re all hanging with Glenn
And our mission is to call up
And mess with the retarded.
Yeah their teeth are gnashing
Helmets on too tight
And all the imbeciles are back
for More-On fights.
Everybody is a fan
Of those riding in a special van
Got their heads deep in the sand
And a short attention span.
When they ring up your gas
Your change is never right
All the imbeciles are back for moron fights.
Click here to hear the song.
Beck has a disabled child, and yet continues the tradition of bashing the disabled, using More-on Trivia so he can "mess with the retarded," as the catchy jingle goes, and mocking the mentally retarded with his Jeopretardy game on the air. From his book:
"Political correctness is a poison, a poison that has deviously infiltrated our society in some parts and been welcomed with open arms in others. It has taken the strongest and darkest feelings that we possess, and driven them deep into our souls. It has created a generation of liars."
You can reach Glenn Beck at 888-727-BECK
Beck's program is syndicated by Premiere Radio Networks owned by radio conglomerate Clear Channel http://email@example.com/ on more than 160 radio stations across the country to an estimated audience of 6 million listeners.
www.clearchannel.com/Corporate/PressRelease.aspx?PressReleaseID=1175&p=hidden Diversity at Clear Channel
Letter from Human Resources
At Clear Channel we value diversity as a cornerstone of our business – our people, and how we utilize our differences to embrace diversity as a business strategy.
Workforce diversity, when defined as inclusion, drives a commitment to embrace our differences while creating workable solutions for our clients. We embrace those differences and consider our differences to be one of our greatest strengths. Inclusion and workforce diversity are terms used to describe a business strategy. However, at Clear Channel they are much more than that - inclusion is about letting people in, and eliminating barriers that would keep people out. Inclusion is about people working together, creating solutions for our advertisers across our multi-media assets of Radio, Outdoor, Entertainment, and Television. In other words, Clear Channel is about you.
Our ZERO TOLERANCE policy that prohibits discrimination extends beyond our employees, into each and every market in which we conduct business. We operate openly within a corporate culture that allows each and every Clear Channel employee the opportunity to excel. Are you ready to join our team?
200 East Basse Road
San Antonio, TX 78209
Clear Channel Website:
Phone: (UK) 44 (0)20 7287 3303
At Clear Channel's corporate offices in San Antonio, TX
www.premrad.com/about-us/email.html Premiere Radio Networks
Premiere Radio Networks, Inc.
15260 Ventura Blvd. 5th Floor
Sherman Oaks, CA 91403
Toll Free: (800)533-8686
One CNN Center, Box 105366, Atlanta, GA 30303-5366
Thursday, November 08, 2007
ok, before you read further, please remember that my daughter, the cute one with golden hair and green eyes, is SUPPOSED to be a fourth grader. She is already wearing a bra, and she is 91/4 years old.
Ciarra has a playdate after school today, a sweet little boy named Robert. They've been friends since Kindergarten, and he recently came to her little bowling party. He is Hispanic, long dark curls, cute kid. They attend each other's birthday parties. They are in each others reading group. Buddies. Friends. Comprades. Ummmmmmm....
I was at the school yesterday, dropping off a computer we were donating. Robert and Ciarra were reading together, laughing, little heads side by side. She saw me, and came running. Long and the short of it is...he asked for her phone number. last night, he called to ask if he could come over today after school. sure, yeah, ok. He has never been over before, but she has boy friends, so...He called 3 times, and I resisted the urge to micromanage, they laughed and teeheed and planned their adventure for today.
I was leaving for work when my phone rang. It was Ciarra's teacher. seems she needed to share, as she said "mother to mother". She related to me that she was very glad Robert was coming over, that the kids were very excited about it. Then she told me that they had been holding hands on the way to lunch. My cheeks were sore from smiling by then, it is nice to know this is a real friendship for both of them. isnt it sweet, innocent, cute...that they held hands? She went on to tell me that she had, in fact, caught them kissing under the slide.
WELL now. So, she IS 9. and she is kinda cute. and she is, by all rights, a pretty typical third grader-who should be a fourth grader. And some 4th graders do kiss...right?
You all are probably with me on the...uhhhhhh....factor. Uh- is this Ciarra being taken advantage of? Uh--is this WAY early? Uh---what the HECK?! Yeah, me too. Memories flooded my mind of all the things I have read. Girls with disabilities get taken advantage of, often. Knowing Ciarra, I am darn sure she likes the attention, she has a pretty strong will. But does it mean different things to the two of them? Is it just innocent kids being kids?
I remember a conversation with another teacher, years ago. Robert was so excited at how well Ciarra could read. And the teacher was talking to him about how nice it was that they were friends. and he said..."She has exotic eyes!"
yes, yes she does. Do you suppose he doesn't really get that she has DS? Do you think it is dangerous to allow them to even go down this path of crushdom? I mean, I know I will be "having the talk" with her (MUCH MUCH earlier than I had imagined it would need doing) But then what? Stop worrying? let her have as normal a life as I would if she didnt have DS? This is not something I expected. I have always wondered about the future, who she would date, who she would like, who would break her heart. But not YET, not this early. Is she more vulnerable than she might be without DS? Will she be heartbroken way too early? Should I just monitor it and let her life unfold as it will, without too much momhelp? This is kinda scary, kinda amusing, kinda....interesting. Oh, one other thing. The boys in her class have apparently been discussing who "the prettiest girl" is in their classroom. And guess who is right up there, at number two? You guessed it. I know life will change, and someday they just wont see her so innocently. But for right now, it does my heart good to know they just see her as Ciarra, with the exotic eyes.
ETA: The kids just got home. I gave them a snack, sat down with them at the table, and very casually said "hey guys, I know you are good friends and that you have kissed each other, but you are much too young to be kissing. Im glad you are friends, but no kissing until much later, ok?" They both said ok, and they both seemed completely fine. So....maybe just addressing it head on will nip it in the bud. I can see them from where I sit though...lol
People ask me how *I* got Ciarra to talk and be as interactive as she is. Truth be told, if it had been left up to me, I would have never gotten it right. I found Communicating Partners when she was about 2. And that was the answer, for us, to correct the mistakes I was making. I was grilling her constantly, "what does a cow say" "whats your name" "Say daddy" BAD idea. I joined the listserve on Communicating Partners, and was able to get real life examples of how to bring out communication-and forget about "speech". Anyway, here are some things I have that Barbara, who is one of Dr Jim's "disciples" ;) has shared over the years:
If your child is in the very early stages of communication development, I recommend playing together often doing the things your child can do and likes to do. Don't demand words if your child mainly uses sounds and actions; get into his world and show him how to use words very gradually.
I would like to include in this newsletter a few paragraphs from a book, Becoming Partners with Children: From Play to Conversation, by Dr. MacDonald. I read these pages over and over when my son was younger. I believe this is the key to helping a child learn to communicate and talk.
Allow the child success. We hope you will come to appreciate that a success for your child at this time is simply stayinng with you in play. Your friendly response is his reward. He will not need you to say things like, good boy or good talking. In fact, responses like this easily become rote and artificial and often put a stop to any interaction you have going.
Your child will know he is succeeding if you simply accept what he does and show him respect by doing something like it. Success for you child has probably been doing what he can do independently, by now he needs successes with people. To grow, a child need not learn to do anything new with people until he can do in 'people play' what he already knows as he plays alone. And why do we care if your child has successes with people? Because successes with people help him feel safe and good and, most important, competent. Unfortunately, for many delayed children, chances to feel competent are few and far between. A child who feels competent will try more so that successes will increase the likelihood that a delayed child will stay with people and make a habit of it.
On the other hand, failures, as when a child cannot answer your question or comply with your command, may discourage him from staying or starting up with new people. The point here is that you have your child's success in your control. There is no avoiding it - you either give him successes or you don't. If you simply respond sensitively to his little actions and any new surprising things, you will soon learn what he needs to do next and how you can encourage him to do it. Just remember: when a child is learning to be social, a success is any behavior he does with people and any new behaviors.
Avoid corrections or discouraging feedback. Tied closely to helping a child have successes, this recommendation is simply a warning that, for a child with a long history of failures, corrections or any feedback suggesting what he did was wrong may drive him away from the necessary person-to-person contacts he needs. Of course, you certainly do not intend to drive him away from people when you get him to do it "right" or when you otherwise let him know that what he did was not enough. Nevertheless, be aware that you may be doing just that, very effectively, in spite of your motives. Until your child has developed a strong habit of social play, it is successes, not failures, that will get him into that habit.
Avoid testing or focus on right and wrong. When getting your child into a habit of people play, forget about right and wrong (except for unsafe or socially abusive actions). Rather than saying "Is he right or wrong?" get into the habit of saying "Is he doing it with people?" Think of your exciting job now as helping your child begin to do with people all the thing he can already do by himself. This change alone would be a major developmental step toward communicating. Once he is a social person, your will have many opportunities to show him the right steps to new things. What is more, only if he becomes a social person will you have those opportunities.
Finding ways to take turns is fun and easy, once you get in the habit. I've learned three things about turntaking: first, watch what your child is doing and become part of it; second, keep the interaction going for awhile; and third, make it fun!
This morning at breakfast, my son, Mark, a five-year-old with Down syndrome, was pretending to read the back of the Cap'n Crunch box. I peeked around the box and said, "Hi!"
He poked his head out and said, "Hi!" back.
The game had started. We made funny faces, growls and roars back and forth with each other as he looked at me from one side of the box, then the other.
Here's another game we've played with words. One day, Mark called me Barbara. This was the first time he had done that, and it was a real surprise. I looked at him —just a little sternly— and said, "Don't call me 'Barbara'. Call me 'mama'!"
He repeated "mama," then said "Barbara" again.
Then I knew how to make a turn-taking game of it. I changed my words a little and said, "Don't call me 'Barbara'! Call me 'mother dear'." Well, of course, he repeated "mother dear," then said "Barbara" again, this time with a big grin. What a game! We went through "sweet mama," "pretty mommy," "skinny mom," "smart mama" and just about everything else I could think of. He loved it! Even after we ended the game, he would sneak up behind me and say "Barbara," just to start it over again. We don't play this game much anymore and I miss it. But all the funny faces, silly sounds and word games have served an important purpose for Mark's development—our days are now one long conversation.
When I became concerned about helping my son Mark's communication, I believed that I needed to act like a tester and bathe him with nonstop language. I gave him little time to try to communicate on his own and I overstimulated him to the point of frequently losing his attention. I was hoping and searching for the signs of words and ignored many of the little things he could do. I showered him with questions and kept making demands of him to come into my world. And, saddest of all, Mark and I had very little fun together. I was too anxious to play with him in ways that made him want to stay with people. I was frustrated and Mark was frustrated and even seemed to be giving up on being with people actively.
Then we began working with Communicating Partners. Immediately, Dr. MacDonald encouraged me to enter Mark's world much more as a play partner than a teacher. Gradually, and with the help of the book, Becoming Partners with Children I began to learn to make the ACE strategies a natural and constant part of my interactions with Mark.
The changes were often slow and difficult; I resisted giving up total control of the boy I thought I was so responsible for teaching. However, hard as it was to learn to be a play partner, the more I did it, the more Mark became social and communicative. I learn the "balance" strategy by waiting for Mark to take his turn and by reducing my over-stimulation of him. I learned the habit of "matching" trying to act and communicate more in ways he could. I found that the more I matched Mark the more he stayed and communicated.
Once I learned all the important things Mark needed to do before speech, I began using the "responsiveness" strategy by attending and supporting many of his little nonverbal behaviors that I had previously ignored. One of the hardest strategies to learn was "sharing control", I had been in such a deep habit of questioning and commanding list it took me quite a while to learn that the less I controlled our interactions and tested him, the more he communicated. And, perhaps the happiest part of my learning was to find the absolute importance of having fun in a relaxed "emotionally attached" and playful way.
First, I would like to emphasize the most important thing I have learned about playing with a child with delays: "Play that produces stress or results in more failures than successes is more punishment than play." (Becoming Partners with Children, page 60) Learning this helped me when my son was only two years old, and it still helps me now that he is nine! If you keep this idea in mind when playing with your child, it will make your interactions much more rewarding for both of you.
When my son was younger I tried over and over to teach him to do puzzles that were too difficult, and to play with toys that were too advanced for him. He frequently responded by throwing the puzzles and toys around the room, or he simply ignored me and left to do something more fun. What was fun for typical children his age was more "punishment" for him. I learned to play in ways he could play and we both enjoyed each other much more. As he developed I gradually brought out these toys and then we played with them together.
Follow your child's lead. This idea has also helped me greatly during the past seven years. I have learned to watch my son closely to see what he wants to do and likes to do. Instead of insisting that he play what I think he should play, I do what he likes much of the time. (But not always of course!)
Adults often think we must direct and teach children what we think they need to learn, but many valuable interactions (and much learn-ing) can take place when we follow their interests and motivations. My son will talk and talk about things that are fun and interesting to him. I use these times to help him practice staying in conversations and learning new words.
Do what your child can do, then add just a small step more. (matching) When Mark was learning to talk I used similar actions and sounds, then added one or two easy words that he could try to say. I learned that although children often understand long sentences, they can't say them. When adults use fewer words and short phrases, we are showing them how to talk. Parents do this naturally with all babies and toddlers, but it is something we need to do longer with our children with language delays. Don't think of this as "baby talk" but as modeling developmentally appropriate speech, and it will be much easier for you to do.
Wait for your child to do or say something before you act or talk again. (balance) This teaches children reciprocal turntaking--something they need to learn to do with actions and sounds before they start to talk. Lots of practice in this early stage of communication development will help your child stay in conversations later. If I don't give Mark enough time to say what he wants, he likes to remind me. He recently told me I talk so much I give him a headache! (It isn't always easy for me to wait, but I didn't know I was that bad!) Most adults are so fast-acting and fast-talking that our children don't get enough time to do and say what they can. This is one reason children with delays often remain passive and quiet as they get older.
Keep your child for "one more turn." If we keep turntaking interactions going a little longer each time, this helps our child's attention span develop, and also helps them stay in conversations later. This is easier to do in the summer when we have more time to play with our child.
Be sure your child plays more with people than alone. If I see my son playing by himself for long periods of time, I try to get involved in what he's doing. Two of his favorite activities are reading books and listening to children's stories and song tapes. I enjoy stopping what I'm doing occasionally to read with him or sing along to the songs.
Too much time spent playing alone can contribute to "social isolation." This can be more noticeable in the summer when other children are playing together and often leave children with delays out of their activities.
If you see this happening to your child, get involved with all the neighborhood kids and join their play as much as you are able. We have a trampoline in our yard that is a good gathering place on sunny days. It's not unusual for seven or eight children to be playing on or around it at the same time. Mark is considered almost equal in this play. They have created some very imaginative, interactive games in which he participates. Two of their favorites are trampoline dodge-ball and soccer (Ed.Note: Be sure to supervise the trampoline at all times!).
Watch to see that your child is actually participating and not just watching. Play with the kids (and like a kid) and your child's communication will develop more over the summer and whenever you make time for play.
It's been a few years since my son was in preschool--he's in second grade now-- but I wish I had known then what I know now. Much of the curriculum is too difficult for children with developmental delays.
Looking back over his IEPs from preschool, I understand why he was often reluctant to do what was asked of him. Although he was four and five years old, he was only comprehending and behaving like a two or three year old child. Parents are led to believe that their delayed child will pick up more mature behavior, social and language skills, and early academics simply by being with other children. But, as the song goes, I learned "it ain't necessarily so."
At one time or another, most parents of children with develop-mental delays are told that their child is not going along with the group. All sorts of words are used to describe these children, "noncompliant" and "resistant" probably the most common. Sometimes it's because they won't answer questions or do as they are told. Much of the time they are "off task" or not paying attention. Often-times they need to be "encouraged" or "prompted" to follow directions. In general, they march to the beat of their own very slow drummer.
I would like to recommend a book to parents, preschool teachers, and anyone involved with programs for young children with develop-mental delays: When Slow is Fast Enough by Joan Goodman, a child psychologist at the University of Pennsylvania in Philadelphia. She did a three-year research study of preschools across the country and found that, "For the most part, the curriculum seems too hard and remote for children functioning at only half their age." She observed that these children, "respond to the difficulty with failure and resistance, thereby forcing teachers to take on excessively restrictive and repressive roles." (page 250) She continues, "The burden of this book is that from every standpoint--psychological, empir-ical, and moral--a corrective shift toward a freer, more child-centered (i.e. progressive) model is needed." (page 250)
Parents want to be informed advocates for their child, but few of us have time to read all the literature written about child development. This book gives a great deal of background information as well as presents Mrs. Goodman's plan for changing the preschool curriculum. It is especially enlightening to parents who feel like I did, "something's wrong here." I want to include a few paragraphs I like, simply because I think there are other mothers who share my thoughts and experiences.
"We cannot disregard the 'environmentalist' argument that children acquire such qualities as passivity, rigidity, and inat-tentiveness as a protective defense against environments poorly calibrated to their developmental level. (Some children) are dis-tractable at circle time when they cannot follow all the calendar talk ... When a teacher 'redirects' children from 'off-task' activities to difficult tasks, they are overwhelmed, may narrow their foci and block out adult entreaties (appearing rigid or slow); or without a good match for their interests, 'float' (distractable). If we keep in mind that these children are functioning at half their age, the possibility of overload seems plausible. By analogy, consider a four-year-old alone at Grand Central Station in New York City. Is it not likely that he would either roam distractedly or hunker down and become absorbed with a toy or with his body? Indeed, do we not all either space out or pull in when the demands of a situation get too great? Of course, we would not subject a four-year-old to the challenge of Grand Central Station (but we might an eight-year-old). Are the usual preschool demands not equally overwhelming to a four-year-old functioning at the two-year level? In short, is it not possible that these children's failures--to absorb instructions, to learn spontaneously, to initiate activities; their unresponsiveness, rigidity, and persever-ation--signal distress from excessive demands, not, as teachers would have it, defects requiring extra repetition and control of attention?
Finally, it is possible that we simply misread the children; the distractability and rigidity may be in the eye of the beholder. 'Inattentive' behaviors may be 'off-task' ... only according to our definitions of 'on-task.' And 'rigid' may simply be our character-ization of plodding, repetitive behavior that, for the child who works slowly on a small palette with fewer colors, may be rich in discoveries." (pages 200, 201)
When Slow is Fast Enough is published by The Guilford Press, 72 Spring Street, New York, NY 10012.
I often think of the many things I have learned about communication development since my son, Mark, was born with Down syndrome eight years ago. At first, I wondered if he would ever talk; now we are conversation partners, talking together all day long when he isn't in school. I would like to tell about some of the most important things I have learned and share a few of our experiences. I hope this will help other parents and children enjoy more playful, communicative relationships.
First of all, I learned that children go through several stages before they start to talk. Like many parents, I assumed language just "happened" (or didn't happen for some children with Down syndrome). I learned that each stage is important and should not be ignored or rushed. Our children need to develop communication habits, not just be able to swords when requested to do so!
If someone were to ask me what I consider the most important thing I do with my son, it would be to have frequent interactions during the day. I never let him remain in his "own little world" doing "his own thing" for long. Children may be quiet and content playing alone, but they do not learn how to socialize and communicate this way. I watch to see that he interacts with someone, if not me, often when he is home. I have seen too many children with Down syndrome playing alone, watching TV, listening to tapes, and even talking to themselves, to let him do this. If your child spends much of his time playing alone, stop what you are doing occasionally and become involved in his activity. Or, get your child involved in your activity! This is the best way parents can help children learn to communicate and talk.
Social Play- Setting the Stage for Communication
I'll admit I never thought of all those silly baby games and sounds as the first stage of communication development, but that's what they are. Before anything else, children must enjoy playing with people. Think of yourself as your child's "best toy." Imitate those funny faces and sounds your baby makes as often as you can. Play "peek-a-boo" and "so big." Get your baby's attention by being silly. Crawl around together on the floor making animal sounds. Use your imagination and act like another child! It's the best thing you can do for your child's communication development.
Most of us think we have to spend lots of time "teaching" our child with Down syndrome how to play like other children. As my son changed from a baby into a toddler, I wanted him to stack blocks, do puzzles, match shapes and colors, and so on. I thought I needed to teach him the "correct" way to do this and spent many anxious moments watching him throw toys around the room because he wasn't ready to do it MY way yet. These playtimes became more stressful than fun for both of us!
I learned that teaching children with Down syndrome new skills is important, but not until they are developmentally ready. I learned the first thing he needed to do was to stay with people in increasingly longer interactions doing something together. What we did wasn't so important, as long as our attention was focused on the same thing and each other. I learned that this social skill is critical for success in school, forming friendships, and later getting and keeping jobs!
My new goal became to see how long we could play together doing the same thing. I decided to put away some of the toys that were too difficult for him, and let him show me how to play! I learned to watch what he did, then to play! I learned to watch what he did, then to play! I learned to watch what he did, then to play! I learned to watch what he did, then did something similar. I stopped being his "teacher" and became his "play partner."
Playing like a developmentally delayed child does not come easy for most of us. It seems too immature and childish. But it is often the best way to get their attention and keep them in interactions. I learned how to play with my son by frequently imitating his actions and sounds, as strange as it felt at the time. He liked it! He stayed with me, instead of going off in another direction, and our interactions became "successes" rather than "failures." I learned that while he could learn some things alone, he could learn to communicate only by interacting with people.
Sometimes Mark played (and still plays) in ways I don't understand. They seem almost autistic-like, even though he isn't autistic, but a very sociable little boy. Now I know that this type of behavior is common for children with Down syndrome. He sometimes lines things up in long rows, or does some other repetitive, seemingly meaningless activity, by himself. At first this almost frightened me, I didn't know what to do about it. As he has grown older, I have learned what to do when he acts like this.
First, I watch and listen carefully to see if I can understand what he is doing and saying, and why. Sometimes it's because there is too much stimulation going on around him - too many people are talking at once, for example, and he can't really follow what they are talking about. I believe he feels overwhelmed and wants the security of his "own world" where he can control the objects.
For a long time, he has liked to line up crayons. Instead of coloring on paper or in coloring books, he simply lines up the crayons and whispers softly to himself. I know that coloring is difficult for him, and he does this to avoid failure. Now that he talks more, I know what he is doing with the crayons, and I know what to do with him. He pretends that the crayons are children at school. Each crayon has a real child's name. He usually lines them up, and takes them to gym where they play "red rover." What seemed to me before as a jumble of crayons being pushed around the kitchen table by a noisy boy, is a real activity he lives with at school.
Now I imitate his actions, take a crayon and pretend it is a child too. He allows me in his play world if I don't take over control of what's going on, but follow his lead. As soon as I'm the boss, the game is over and he leaves to play something else. So, I've learned to make changes slowly, gradually adding new ideas, new actions, and new words as he is able to do them. He shows imagination if I let him take the lead. The bigger crayons are the teachers, or sometimes the "children" go to the cafeteria for lunch, and so on. I try to be playful and avoid being a "teacher" who insists on doing things her way, but bring out the coloring books gradually so he gets practice using crayons like other children.
Many children spend much of their time watching favorite videos on TV. Mark could spend eighteen hours a day doing this! I have learned how to get involved in this pastime by making comments, singing the songs, and dancing along with the characters. The important thing to remember is to keep our children involved and interacting with real people, not objects and favorite characters in movies. It's fun to turn off the movie and act it out with your child. It doesn't have to be perfect, of course, just fun.
Turntaking - Your Child's Next Stage
Most of us never think about communication development until we have a child who is language delayed. We eagerly wait for every new word our child says! I learned that the skill of taking turns back-and-forth with actions and sounds is often overlooked by parents who are in a rush for words. Unless children learn how to do this, they will not know how to stay in conversations no matter how many words they can say!
Reciprocal turntaking is like a Ping-Pong game - each person responds to what the other does and says before taking another turn. Most children learn this quickly, but it is more difficult for children with delays. With their slower cognitive and motor skills, children with Down syndrome often passively watch and listen to the rest of us talk. We just continue our interactions at a pace they can't keep up with, so we leave them out of many activities and conversations they would like to join.
I learned a very important parent strategy during this stage of my son's development - waiting. One of the hardest things for adults to do is wait for a slower child to take a turn before we do or say something else. We are in such a rush to get things done! I learned that almost everything we do with children - mealtimes, getting dressed, bathing, going places in the car, simple household chores - can become turntaking interactions if we wait and give them their turn to participate. They don't have to do things perfectly, of course, just have a turn doing something. Now that my son is a real talker, he sometimes reminds me, "Wait, wait! Listen to me!" I expect many children with Down syndrome would like to say this to adults, if they could talk.
Some of my fondest memories of my son's early childhood are of actually playing Ping-Pong with him. He was about three or four years old and wanted to do everything his older brothers did. This included playing Ping-Pong. He couldn't reach the table, or hit the ball, of course, but that didn't stop us. I learned that the best way to start an interaction with him is to follow his lead, so down on the floor we went with paddles in our hands. He hit the ball on the paddle to get the proper sound, then threw the ball to me. I did the same. He loved this game!
Gradually I changed what I did and introduced simple new actions, sounds, and words he could try. I remember, "Oh, wow!" was one of his favorite expressions at one time. He learned the meaning of, and how to say words such as "under," "behind," "in front of," "on top of," and "over there" to tell where the ball went. I added variety to the game by including Barney or one of his other stuffed friends.
Another turntaking game we enjoyed at this age was what we called balloon volleyball. He learned most of his colors by hitting balloons back and forth with me. This is a good game to play while waiting for doctors. You can carry balloons in your purse or pocket and take them anywhere. (It also keeps a child from getting into the medical equipment in the office.)
Finding ways to take turns is easy if you watch and listen to your child as closely as I do mine. It's fun to imitate their expressions, sounds, and words and make a little turntaking game out of them. Mark and I still have fun doing this. Last night we played with the word "substitute." While he was getting ready for bed, he told me his first grade teacher had not been at school. I asked, "Oh, you had a substitute?" This is a fairly new word for him. He repeated, "Yeah, a substitute." I asked what her name was. "Mrs. Tute," he answered. I laughed and said, "Her name isn't Mrs. Tute! She's a substitute teacher. When your real teacher is gone, you have a substitute." He understood, but knew he had a good joke going with me, and didn't want to end it. He insisted, over and over, that her name is Mrs. Tute.
Finally, I asked his brother what the substitute's real name is. He said, "Mrs. Riggle." Another good word for a game. We called her "Mrs. Riggle Wiggle" and "Mrs. Riggle Wiggle Giggle" until we couldn't laugh anymore.
Every turntaking game doesn't have to be this silly, but children enjoy us when we sometimes play like a child instead of an adult. Turntaking games teach children to stay interacting with us longer and longer each time we do it. Parents can help children develop their attention when we keep them for "one more turn" than before. Today, my son's teacher (the real 'teacher', not Mrs. Tute!) tells me he pays attention in class better than some of her other students. I believe our frequent and increasingly longer interactions have helped him develop this skill.
Where is my little boy who once pointed to his bottle and said "ba" when he was hungry? He'll get off the school bus soon, open the refrigerator, and probably ask, "Oh, man! Where's the Pepsi?" If he finds one, he'll instruct his older brothers, "Don't drink that, it's mine. Get your own!"
How did this happen? How do children learn to communicate and talk? Most parents know that when a child points to something, he wants it. We get it, give it to the child, and that's that. He's happy and we can go back to what we were doing. But if your child has Down syndrome, we need to do more than just satisfy his immediate needs and wants. We need to keep him interacting with those gestures and sounds.
I learned that responding to those first forms of communication is critical if we want our child to develop communication habits. Children must know they can get our attention and have effects on us, or they will stop trying. We need to understand that those first gestures and sounds are the "seeds" from which words will come. Each time we respond to them, we encourage our child to do it again.
A new parent strategy became very important to me at this stage of my son's development: progressive "matching". This means doing and saying what your child can do and say, then giving him a small step more.
Before I learned about matching, I thought I was teaching my son how to talk by saying, "Here's your bottle, honey. I don't think you need to drink so much milk; you're getting to be a little fat guy. Can you say 'bottle' for mommy? Good boy, you tried."
I wasn't helping my son learn to talk by talking in such long sentences; I was teaching him how to listen while I talked. Of course we want our child to understand us, but we must also show our child how to communicate and talk. I learned the best way to do this was to give him one or two words that he could try to say at the moment he was most interested. Instead of a long sentence, I simply said "ba...drink" each time he pointed to his bottle or sink for a drink of water. Then I waited for him to take his turn, expecting him to communicate with me. He continued to point and say "ba" for quite a long time, but I remember the day he said "drink" as an exciting day for both of us.
I learned to keep him in nonverbal interactions by imitating many of his actions and sounds, before I gave him the adult word. Children with Down syndrome need lots of practice doing anything they can back-and-forth with us to develop communication habits. I found that by responding, waiting, matching, and expecting my son to communicate, he always did. Now I sometimes have to tell him to stop talking. What a pleasure!
A good way to understand how children learn to talk is to imagine we are in another country, learning a new language. I've done this and I know how difficult it is. Everyone talked so much and so fast, I couldn't keep up with them. Unless we have a translator, we are completely lost and unable to communicate. This is probably how children with Down syndrome feel with the rest of us.
One of our jobs as parents is to "translate" our child's gestures and sounds into easy words they can say. We can also think of this as second-language training. Children have their own ways of communicating; we have to show them how to use ours.
The gestures and sounds children make usually refer to the people, places, toys, foods, and pets that are meaningful to them. As a translator, we can give them one or two words to try to say, at the appropriate times. We can do this all day long; communicating with our child should be a habit for us. Children learn to talk by having many pleasant social interactions during the day, not just during speech therapy with a professional.
I remember driving to my son's preschool every day as one long conversation for us. He may have only been able to say a few words at a time, but we turned them into very long interactions! We took turns pointing out the window and saying car, bus, truck, house, tree, motorcycle, whatever we saw. He liked to make the sounds of motorcycles, tractors, fire engines and police cars. He learned to say more words as other things became important to him: McDonald's, Pizza Hut, Taco Bell, Wendy's, the library, shoe stores, WalMart, and so on. As long as I matched, waited, and kept our interactions going, he continued to say more and more. Now he explains why he has to stop at these places, and what he wants to get.
Besides being a translator for our child's nonverbal communications, we can think of ourselves as "living dictionaries," always putting new words on our child's experiences. "Say what you see" is a good thing to remember when you don't know what to say. Be sure it is something your child is interested in or you will not get his attention, and you will end up talking to yourself!
A third helpful idea is to think of yourself as a "story partner" creating stories with your child as you play and go about your daily activities. My son loved playing in the bathtub. We have spent many hours talking about bubbles, boats, and other toys he played with in the water. He also liked to pretend he was Shamu the whale at Sea World, making whale sounds back and forth with us.
I remember playing hide-and-seek with all his stuffed animals. We played shoe store and grocery store, talking about whatever he could find in closets and cupboards. We pretended we were in "Mary Poppins" and acted out scenes and sang the songs. His words weren't perfect, but we had fun. He got lots of practice "playing with words."
He got so good making up stories, he tries to do this at school now. His teacher says he likes to go into the office and tell the secretary he needs to call his mother to come get him. He feels his head (or stomach), says he's hot, and isn't feeling well. Sometimes they almost believe him.
As my son and I have gone from being play partners to conversation partners, I see how important it is for him to feel successful in our interactions. I must still watch how I talk to him. If I put too much stress on him, he ends the conversation by walking away and doing something on his own where he can feel successful.
There are a few important ways I have learned to help him stay in conversations. First, I give him freedom to say what he can, how he can, without always correcting him. His words and sentences aren't perfect, but he thinks of himself as a communicator and initiates conversations and responds to others regularly. Staying in conversations is a habit for him.
I have learned not to ask too many questions. Most parents ask children question after question. We think it will start conversations, but oftentimes does the opposite. "What are you doing? Why are you doing that?" or "What did you do in school today? What did you learn? Were you good? Who did you play with at recess?" Our questions never end!
Much of the time children ignore us and don't answer our questions because we don't expect an answer or wait for it. I have seen how making a comment and waiting often gets more response from my son. "I wonder..." is a good conversation starter. Comments give children freedom to say whatever comes into their minds. They don't have to give a "correct" answer. "You look hungry," instead of "What do you want to eat?" "You look like you had fun!" instead of "What did you do?" "Time to get dressed!" instead of "What do you want to wear?" Think of ways to change your questions into comments, and your child will probably talk more. This does not mean we should never ask questions. We just need to be careful to ask only questions we really want answered and be willing to wait.
Another helpful thing I have learned is to make conversations out of our routine activities. They don't have to be long, or important - just frequent. If Mark is getting dressed for school, I might say, "That shirt is too small." This gives him an idea. He might get another shirt and say, "This one is bigger." I could add, "I like this new blue shirt." Adding more and more comments like this gives children opportunities to practice staying in conversations. It's an easy way children with Down syndrome will learn to make communicating with people a habit!
I had an experience last summer that showed me the importance of this. Mark and I were at a baseball game where his ten-year-old brother was playing. Sitting across from us was a mother and her daughter who had Down syndrome. The girl looked about twelve or thirteen years old. As I glanced occasionally at the mother and daughter, I noticed they never talked to each other during the game. The girl fixed her hair, tied her shoes, ate candy bars, drank pop, and watched the people sitting around her, but I never saw them talking together until the game was over and they were leaving.
Out on the ball field, it was totally different. The coaches were constantly interacting with the boys, showing them how to pitch, hit, or catch the ball. I thought of the term "communication coach" and understood this is how we need to be with our child. Children with Down syndrome will not learn how to stay in conversations by watching and listening to us, but by getting lots of practice "playing with words" the way coaches and kids play with baseballs. With lots of practice, they can only get better!
Understanding Your Child's Speech
Once children with Down syndrome begin talking, it is likely that they will not have clear speech at first. While most children's speech is not clear at first, children with Down syndrome usually have much more difficulty being understood than most children. This is as expected since Down syndrome usually involves slower development of fine muscular movements. Since their muscles are making speech harder for them, it is essential that we make sound-making as frequent and easy as we can for them. How do we do that?
First, make sure that you encourage your child's sound-making by habitually making sounds like his, BUT BE CAREFUL NOT TO OVERLOAD HIM WITH MANY MORE SOUNDS THAN HE CAN TRY. The initial goal is to get frequent "ping pong games" with sounds going back and forth; between you and him all through the day. Start by IMITATING your child's sounds whenever they happen, then WAIT silently for him to give a sound back, any sound at first. Throughout the day, think of sounds as your child's most important toy. Play with these "sound toys" back and forth so your child learns that the more sounds he makes, the more sounds he will get back that he can do; and the more attention he will get from people around him. Think how inexpensive and available sounds are as toys for your child. They are free and take almost no time and can be played with anywhere. Many children with Down syndrome make sounds mainly by themselves or to get needs met. The problem here is that they will simply not get enough practice and feedback to make talking a habit and to learn how others talk.
Many parents have learned to think of this process of moving from sounds to words much like second language teaching. These parents have learned that their child has her own language of sounds and movements, and their job is to translate these sounds and movements immediately into single words. Pretend a little Spanish speaking girl is visiting your home and she points to a light and says "luz". A natural thing to do is to say "light", thus translating her language into yours at the best moment for her to learn the word, when she wants to communicate about it. When we do the same with our children's unclear sounds and motions, the child tries again and often comes closer to our ways of talking.
USE THE FOLLOWING GUIDELINES TO GET INTO THE HABIT OF HELPING YOUR CHILD MAKE SOUNDS MORE LIKE YOURS.
WHAT TO DO WHEN YOU DO NOT UNDERSTAND YOUR CHILD'S SPEECH:
1 BE CONVINCED OF YOUR POWER. Realize that your child can learn to talk every time you talk.
2 MATCH YOUR CHILD'S SOUNDS. Your child will talk more like you if you give him little sounds that he can do.
3 SHOW A NEXT STEP. When you match, add another sound and word to show the child what he can do next.
4 WAIT WITH ANTICIPATION. Be sure you make a sound then wait for your child to do something; if you make many sounds in a row, he will learn to listen, not to talk.
5 TRANSLATE YOUR CHILD'S LANGUAGE INTO YOURS. Give your child an English word for his own language of sounds and gestures, right at the moment he is paying close attention and is thinking about the word.
6 SOMETIMES, JUST IMITATE YOUR CHILD'S SOUNDS. Even if you do not understand what your child is trying to say, imitate his sounds just like he makes them. The reason for this is that he will attend to you more and keep talking. Then, he will try a clearer way which he often can do if the old ways do not work.
7 ACCEPT 'BETTER'; DON'T BE A PERFECTIONIST. Accept any changes at first. Be sure not to push for adult words too soon because you will lose the child. Ask yourself, "Is he coming closer?" then reward him by showing him a next step.
8 QUANTITY MORE THAN QUALITY. When learning to talk, it is much more important that a child become a frequent sounder regardless of the quality or clarity of the sounds. He needs lots of practice and immediate feedback before he should be expected to say things adult-like.
9 PUT ON STRANGER'S EARS. Parents and teachers often understand a child's speech when strangers would not. Help prepare your child for the world by responding less to speech that you know strangers may not understand. Your child will learn to do more.
10 MAKE SOUNDS YOUR MOST FREQUENT TOY. Play back-and-forth with your child's sounds all through the day. Sounds are free, easy and always available. The more your child plays with sounds, the clearer he will talk.
Communication Problems and Down Syndrome: Research Findings and Clinical Conclusions
Since 1971, I have conducted research and clinical services with over 200 children with Down syndrome and their families. The findings from this work have been very helpful in developing several tests and treatment programs for preconversational children. The following conclusions come from three sources. First, videotapes of over forty children interacting with their parents and clinicians before and after treatment programs; second, interviews and observations with parents concerning attitudes and practices affecting language development; and third, critical review of 30 years of developmental research.
Far Too Little Interaction. The majority of children with Down syndrome studied interact much less frequently, for briefer durations, on fewer activities and with fewer people than children of similar age and developmental levels. Clearly, children will learn to communicate and talk to the degree that they have frequent social contacts with others. Consequently, the most important way to help a child communicate may be to make sure they are interacting for increasingly more frequent and longer times. A major goal of our work has been to focus on four consistent goals for children with Down syndrome. To increase 1) the number of interactions with people; 2) the length of the interactions in terms of back-and-forth turns; 3) the variety of activities; and 4) the number of people who deliberately interact with the child.
It is my firm belief that the task of helping a child with Down syndrome learn to communicate can be much more efficient and effective if we insure that the child has a great number of natural approaches to practice communication at any level.
Too Little Playing in the Child's World. While most parents believe that play is important for a child's development, most think that playing with toys is the best kind of play. While a child will learn a lot from playing with toys alone, it is extremely important to realize that he will not learn to communicate that way. To learn to communicate and talk, a child must play regularly with people.
Too Much Stimulation. A common recommendation to parents of young children is to "bathe your child with language" and "talk to your child all the time". In order for your child to communicate, he needs two major things: models of things he can now do, and time to do it. Much research and parent reports show that children with Down syndrome are often barraged by much more language than they can try to do. At the same time, they are given very little silent time to try something. Often we see interactions like the following. Charley: Points to the refrigerator. Parent: "Are you hungry? I bet you want some juice. You like apple juice best. Okay, here it is." and the child drinks the juice without having the opportunity to practice communicating about it.
We teach parents such as these to communicate once and in a way the child can soon do (i.e., matching) then wait for the child to do something, anything, at first. Let's go back to Charley for a more effective exchange. Charley: Points to refrigerator. Parent: Points like the child and simply says juice then waits silently looking at the child expecting some kind of response. Charley: Points again and says "oo". Parent: "oo, juice"; then waits again. Charley: Points and says "oo". Parent: says "juice" and gives the child a sip of the juice then waits again. Charley: says "oo". Parent: "juice, more juice," gives the child another sip and waits again. Charley: says "mo". Parent: says "more juice," gives another sip then waits; etc. This parent is acting and communicating in ways the child can try; and the child does try. The parent rewards the child a little then waits for another communication - anything the child can do - then the parent shows the child a little next step ("more juice"). Be sure to make the most of such opportunities and not give the child the juice all at once. Operate by the rule "Keep the child just a little longer" and remember that every exchange is a chance to communicate.
Dead End Contacts. Our research shows that children with Down syndrome often have the habit of popping in and out of interactions without staying long enough to learn to communicate much. We also find that parents and other adults assume that if the child wants to leave they should allow the child to do so. But, if we believe, as we definitely do, that a child will learn to communicate only to the degree that she stays interacting longer and more frequently with others, then we will get into the habit of keeping the child a little longer. Think of your back-and-forth interactions with your child like insulin to a diabetic child. Without more and longer interactions, your child will not learn to communicate.
Getting Stuck Communicating Without Words. Many parents of children with Down syndrome are so happy when their child starts communicating in any way at all - little sounds and movements - that they accept these little attempts. That is as it should be. Long before a child talks, she will need to communicate with any kinds of sounds and movements she can do. We strongly encourage this. However, there is a potential problem here. We have seen many children stuck at communicating with old sounds and movements long after it is clear that they can say some words. Many, many times I have shown parents that their children actually do not need to talk, when they get attention for any old attempts to communicate. Then I have often shown parents that by simply waiting silently after a child makes an old sound or movement, the parents will see the child trying something a little more mature.
Not Knowing What to Say. Consider your child's job as moving from his own special language without words to your English language. Often when a child gestures, or makes a sound, he needs help to move from his language to yours. A very effective way to do this is to translate the child's sounds or gestures into a word. For example, when a child points to her sister, Janie, say "Janie", then wait. By doing this you are translating and giving her a word to replace her old gesture. We often then play with the word back-and-forth, treating words as the child's most important toys - as we would throw a ball back and forth.
Too Much School Language. Years of observing parents with children with Down syndrome tells us how important parents think it is to teach the child the language of school, often even before he communicates his own ideas. I have known many children with Down syndrome who can show words for the alphabet, numbers, colors, even a long list of animals they may never see; but the same children have few words for the things they are experiencing and things they want to communicate about. Be sure your child has words for communication before words for school.
Our approach, then, is to focus on helping the child learn words for two broad classes of things: their immediate experiences (e.g., fall down, hug, mommy, daddy, give) as well as words for the things they are already communicating without words (pointing to kitchen - eat, hungry; arms outstretched - up, hug or what ever you think the child means). Why are these words most important and more developmentally necessary than school words? These words are the things the child both knows and cares about. A child is more likely to use words that match his current knowledge and motivations. A child will have many more opportunities to practice talking with words that describe what he knows and wants than with words like red, three, and other words that have little daily communicative uses. Consequently, we encourage parents to give their child much more "communicative" language than "school" language.
The Habit of Supporting Old and Inappropriate Behaviors. One of the most difficult habits to change in parents is paying attention and talking to children when they are doing undesirable or immature things. A great many parents have told me that they feel it is wrong to ignore a child when he is misbehaving or communicating in some immature way. We have worked very hard to show parents that paying attention when a child does these things is much like giving the child a ten dollar bill for it, because parents' attention and words are often the most powerful rewards for a child. On the other hand, when we ignore those behaviors we usually see the child doing less of them and more of the appropriate and mature things. We teach parents to get into the habit of asking themselves "Do I want more of what my child is doing?" Then, if the answer is yes, they should talk and pay attention; and if the answer is no, they should momentarily pay the child no attention - no talk - nothing that would tell the child he gets attention for it.
Finding ways to take turns is fun and easy once you get in the habit. This morning at breakfast my son, Mark, a five year old with Down syndrome, was pretending to read the back of the Cap'n Crunch box. I peeked around the box and said "Hi!" He poked his head out and said, "Hi!" back. The game had started. We made funny faces, and even growls and roars, back and forth with each other as he looked at me from one side of the box to the other.
I've learned three helpful things about turntaking: first, watch what your child is doing and become part of it; second, keep the interaction going for awhile; and third, make it fun!
Here's another game we've played with words. One day my son called me Barbara. This was the first time he had done that and it was a real surprise. I looked at him (just a little sternly) and said, "Don't call me Barbara. Call me mama." He repeated "mama," then said, "Barbara" again. Then I knew how to make a turntaking game of it. I changed my words a little and said, "Don't call me Barbara! Call me mother dear."
Well, of course he repeated "mother dear," then said "Barbara" again. (This time with a big grin.) What a game! We went through sweet mama, pretty mommy, skinny mom, smart mama, and just about, everything else I could think of. He loved it! Even after we ended the game, he would sneak up and say, "Barbara," just to start it over again.
Why Do Children with Down Syndrome Have Difficulties Learning to Talk?
Slower Muscular Development
It is harder for children with Down syndrome to make the rapid movements needed to combine speech sounds for language.
Slower Understanding of Adult Language
It is more difficult for our children to process long strings of information that they are often exposed to.
Less Practice Interacting with People
Our children often spend much less time interacting with people and practicing their communication.
Too Passive a Role in Social Life
Our children are too often on the taking than the giving end of relationships, thus affording less of the active participation they need for speech to develop.
Old Nonverbal Communication Works too Well
Especially within families, children with Down syndrome develop elaborate ways to communicate with movements, gestures and sounds that are effective at home but not in society. The children often have little need to use the more difficult words.
Low Expectations of Others
Many people do not engage children with Down syndrome in communication much because they do not expect them to talk or be understood.
People Talk for Them
Ofren, our children appear to learn not to talk when others talk for them.
Not Enough Time to Talk
Frequently, people do not wait long enough to allow a child to respond. Children with Down syndrome often act very passive as if they know they won't have much chance to talk.
Our children are often exposed to much more language than they can try to do. It is like throwing several balls at a child learning to catch.
Too Much School Language; Not Enough Communicative Language
Much of the language we teach our children, like numbers and colors are not very useful in daily communications. Children need to have a practical life vocabulary if they are to practice their language regularly.
Too Much Performance Language; Not Enough Social Talk
Many children with Down syndrome use language to recite things and perform show and tell feats. But, they often do not have the easy conversations that build friendships.
What Can I Do to Help My Child Talk?
Use the guide below to prepare you child to be a frequent and enjoyable talker.
Play frequently in ways your child plays.
Balance your times together; be sure both of you do about as much as the other.
Wait for you child to talk; avoid doing all the talking.
Match your child's actions; act in ways you child can act.
Match your child's communications; communicate in ways you child can do.
Talk as your child does, then show him a next step.
Respond to your child's little sounds and actions as communications at first.
Respond more to your child's words than gestures or sounds, after he's talking regularly.
Show him what to say in one or two words.
Make talking times more play than work.
Translate your child's own language of sounds and movements into a word.
Don't rush your child to words; communicating with sounds comes first.
Reduce your questions; show your child what to say instead.
Accept any pronunciation at first, he won't talk like an adult until he practices a lot.
Play with words back and forth; words are your child's most important toys.
Be more of a play partner than a teacher; your child will stay and learn more.
Be a living dictionary; put words on your child's experiences as they happen.
To help you learn these strategies, refer to the two new home activity books, Before Speech and First Words.
What Does My Child Need Before He Talks?
The more your child is in the habit of doing the following things, the more ready he will be for language. Use the checklist below to prepare you child to talk.
My child is ready to talk when he or she:
Plays with people
Interacts frequently with people
Imitates others' actions
Imitates others' sounds
Takes turns in play
Pactices making many sounds by himself
Communicates with movements
Communicates with sounds
Plays meaningfully with things
Responds to speech
Prefers being with people to being alone
Plays more of an active than passive role
Becoming Play Partners
"Playing with adults is necessary for a child to learn to communicate." (People are more important than things!) p. 59.
"Reward the child for even the smallest steps." (Don't expect too much!) p. 60.
"Few children will involve adults in play in they realize those adults do not enjoy it." p. 61a.
"Keep track of two things: how long he stays and new things he does. Make those your rewards!" p. 63g.
"Regardless of the topic or activity a child chooses, there are ample opportunities to show a child how to be social and communicative about it." p. 66g.
"To become social and communicative, children must learn that they can be successful and have some control over their people." p. 67.
"If a child seems not to want to play, we look first to change what we are doing before we say he "can't" or "won't."" (Usually it's because adults are doing something too different or not interesting for the child.) p. 74b.
"Think of a play activity as your child's first conversations, only without words." (Be sure to tell this to parents who are so eager for a child to talk!) p. 74b.
"You have your child's success in your control." p. 83c.
"When getting your child into a habit of people play, forget about 'right' and 'wrong' (except for unsafe or socially abusive actions.) Rather than saying, 'Is he right or wrong?' get into the habit of saying, 'Is he doing it with people?'" p. 84e.
Becoming Turntaking Partners
"What each person does on his turn is not necessarily important, as long as it is something related to what the other did and keeps the interactions going." p. 102.
"Every action or sound of a child can become an interaction and a communication if others react as if it were. Consequently, be aware of your child's seemingly meaningless behaviors; with care your can make them interactive by gently showing how to do them with you." p. 114b (Teach this to parents!)
"Enjoying people is more important for their child's communication than learning to make sounds and words correctly." p. 119e.
"Matching is perhaps the most effective strategy you can use with your child regardless of his level." p. 126.
"When adults fail to wait, their dominating behavior actually appears to suppress the child's attempts, even convincing him that no one values what he can do." p. 129.
"Before you assume the attention problem lies in the child, consider that she may naturally go to things she finds most interesting and leave the boring ones. You need to be more interesting that the things that distract her." p. 130. (Children also have attention problems if things are too difficult for them - or they can show non compliant, inappropriate, or just "bad" behavior!)
"Being relaxed and enjoyable works much more effectively than force to keep a child interacting and genuinely participating." p. 133e.
Becoming Communicating Partners
"Avoid the rush to words!" p. 148.
"Begin to see your child as a communicator whether or not he talks." p. 150.
"Show your child that you expect something, but not necessarily something particular." p. 153.
"A child will initiate interactions if he regularly has successes when he does so... If a delayed child is accustomed to being corrected or given more work when he initiates, he will do less." p. 157.
"Children seem more likely to try to imitate others who do things they can already do, that is, that match their current abilities." p. 162.
"The important thing for a beginning communicator is to do anything and do it frequently... For a child who is learning, any communication is important." p. 163.
"Have an attitude: 'Am I understanding a little more?' rather than, 'Is he talking right?'" p. 167.
"Adopt the habit of responding to anything the child does, as long as it is safe and inoffensive. Respond in a matched way... then wait silently for the child to communicate." p. 178.
"Build a strong base of actions and sounds in a stable habit of interaction back and forth, and communications will evolve." p. 180.
"When language fails, always return to the principle of nonverbal communication. Whenever your are in doubt, return to the simpler kinds of communication you have learned about. These will strengthen you with success and show you the language that is appropriate for your child." p. 182 (imitating and matching sounds, actions, and first words).
Becoming Language Partners
"It is undeniably unfair to say a child does not have language or can not talk on the basis of failures to teach him words for things outside his knowledge, motivation, or practical use in communication." p. 197.
"Let your experiences with your child lead you naturally to showing him new language in a matched way he can do." p. 202b.
"Be very careful not to talk too much!" p. 204.
"The child has to participate in order to learn and to stay motivated to become a genuine talker." p. 204.
"We strongly urge parents and professionals to put aside their goals of teaching any new language until the child is in the habit of communicating his current language for social, friendly purposes." p. 201f.
"When a child learns that words are an enjoyable extension of play, rather than a task at which he can fail, his words become extensions of his interests and experiences that are as natural for him as for any normal conversationalist. If he learns that talk is good, regardless of its correctness by adult standards, talking will be more likely to become a natural habit through which he can learn language in any interaction." p. 216c.
"It is essential than you clearly show him you expect to talk." p. 216e.
"Habitual communicative interactions must be firmly established before the child is pressured with language goals..." p. 219.
"The more you use language that your child can use, the more likely his is to do so!" p. 221.
"Focus more on the child's ideas than his way of communicating." p. 229.
Becoming Conversation Partners
"The less work we make for a child in an interaction, the more he stays and the more he communicates." p. 246b.
"Exchange words that describe your child's activity..." p. 251, "Say what you see and feel and keep him doing the same." p. 253.
"Create social conversations out of children's instrumental communications, as for help or information... In this way, your child can learn that the reason to contact other people is not just to get needs met but also to give and take with a partner." p. 259.
"(Tell this to mothers!) "Clinical researchers have found that mothers of children with the highest developmental scores were highly child-oriented and showed low degrees of control and stimulation. In other words, the parents with the more communicative children were those who acted like their child, followed their child's lead, and established an easy, conversational style rather than a directive, controlling one." p. 269.
"Your child must have successes that motivate him, and both of you must stay for increasingly longer exchanges." p. 270.
"Resist the temptation to fill in all the silences. If you don't resist, you will find you are having conversation with yourself." p. 273d.
"Conversations appear to build to the extent that each partner can participate actively with his own ideas. We rarely see children pursuing conversations with partners who do not give them the freedom to develop their own ideas." 276c.
"We need to allow children to express all the knowledge that is suppressed by adults who control conversations. Unless a child feels free of judgment and failure in an interaction, he is not likely to communicate much of what he knows." p. 278f.
"Ask only real questions, questions you genuinely what answered and will wait silently for." p. 281a.
"One test of whether the interaction is too stressful for the child is whether or not he stays with you."