From Michelle - mother to a newborn with Down syndrome we've been praying for:

Hello again! Just wanted to stop in to let you know how well Maggie is doing. Since her surgery she is gaining weight beautifully. She went from 5lbs 10oz before to now 6lbs 8oz! She has been recovering well. Thanks to all that have prayed for her!

Check out Maggie's last picture less than a week ago to see how well she's recovering.

Melissa - This is wonderful news! Jonny had surgery after he was born and was in the hospital for three weeks. I know how we struggled to put weight on him - how every ounce counts.

Congratulations! She is looking more and more beautiful!

I was really excited about the trip. I love driving through the rolling hills of Virginia when everything is green, either by myself or with my family.

Zach has now made me three CDs which I LOVE. I was ecstatic listening to the eclectic mix he'd put together - many somewhat familiar because he's been playing them on his computer next to the kitchen while home for the summer. I asked Zach about his music - why it is so unique and interesting and he said it's what known as Indie - independent labels not conforming to the major label style. He said it's really popular with college kids.

Oh, I get it! Like Indie movies as opposed to the dismally small field of offerings at our local multiplex. Btw, I've seen a few Indie movies lately which I will write about soon. I've always liked stuff outside the mainstream.

Anyway, I haven't sat down with him yet to find out who's singing what. I do know there was a lot of Regina Spekter and I really love listening to her. I don't usually like female singers - they seem whiny to me - but I do like her because she is so creative and fun.

I felt like I was in heaven driving along by myself and listening to great music. And very blessed to have my own personal guide into a musical genre that might have passed me by if I didn't have kids and they didn't want to share the things they love.

Thanks, Zach!

It was neat to go back to the camp. The boys had gone there two summers ago, and then I spent a week there at Family Camp with them, so I know the grounds and this year was able to imagine them doing all the fun things I knew they would do: horseback riding, swimming, archery, climbing wall, campfires. I heartily recommend the Down Syndrome Family Camp Easter Seals offers in August. Even though Tripp had to work, I had a wonderful time kicking back with my four youngest sons.

Today when I arrived, Jonny came flying at me with a whoop, almost knocking me over! It was wonderful to see them again, but hard for them to say goodbye to their counselors, who come from all over the world to spend a summer working with kids with special needs.

Thanks to all the caring young people who worked with my children!! You can come visit us anytime!

Our ride home was wonderful too. and here was a funny sight:

Feathers were flying at us from this truck barreling up 81 filled with hundreds of chickens. I briefly considered never eating chicken again.....

June 25, 2008
Disability dolls become more popular
Are Down's syndrome, blind and chemotherapy dolls a blessing or just a sick joke? Supporters say they help children
by Carol Midgley

Take a look at the doll in the picture. What do you see? You'll probably notice almost immediately that its face is not as “regular” as the rosebud-mouthed, snub-nosed dolls that come as standard in toy shops. But if you picked it up and examined it more closely, you'd see that they are not the only features that you don't find on a “normal” doll: a horizontal crease in the palm of the hand, the ears set low on the head, a flattened bridge across the nose, a slightly protruding tongue.

This is a Down's syndrome doll, designed with the aim of giving Down's children a toy that reflects themselves as they are, and not the mainstream version of physical perfection trailblazed by the likes of Barbie and Baby Annabel.

Read entire article here.

I'm not gonna lie (this is something my teenagers have been prefacing all their opinions with lately) - I have mixed feelings about this. I'm really not sure I like the protruding tongue as not all of our kids have that problem and it is actually something we try to make our kids aware of so they can stop doing it. There is one doll out of the eight models that does not havea protruding tongue:

And I think the dolls somehow don't capture the creative energy and sparkle of our kids - to see what I mean, look at the kids in my photo album:

Our Little Extras: A Mother's Day Down syndrome celebration

Here is Maggie! Her mom Michelle sent her photo to us with thanks for your prayers, support and helpful suggestions.

I wrote:

My first son Jonny stayed three weeks in the hospital after he was born because he needed surgery on his intestines. It was so hard.

Please keep me posted. We will all be praying for you.

Michelle wrote back:

I think the hardest part was waiting for the surgeon to just come out and say everything went well and I could see her. It was also hard trying to explain to my other children why mommy had to be away for soo long. I still haven't explained to them that she has DS. Any pointers on how to explain that to a 5 and 6 year old?? Well let me know when her picture is posted and where to look to see it. Thanks.

Michelle, we told our kids like it was something we could all be proud of - having a baby with Down syndrome as part of our family.

We told them that Jonny had Down syndrome, which meant he would look a little different and that it would take extra time for him to learn to do some things.

The most important thing, I think is being positive about it. They are sure to adore her. Look at that precious face.

We also sent out birth announcements telling our friends so that we could cue them not to feel sorry for us. We said Jonny had Down syndrome, that we were happy to welcome him into our family and looking forward to everything God would teach us. That he had to spend some extra time in the hospital for surgery, and that we asked for their prayers.

I'll never forget the shower my friends had for us (since Jonny was our eighth, I wasn't really expecting a shower) and how wonderful it was to see my friends holding Jonny, how wonderful it was to hear them say he was cute.

And I'll never forget my friend Sandy saying in her thick Southern accent, "Well, Barbara, he'll never be president. But that's just as well."

We all laughed. That so broke the ice!

You have many good times ahead, Michelle. Some people will drift away, but others will come into your life. Your life will be so different - and when you look back you would never think of changing it.

I have come to MommyLife.Net before and felt it really helped me. Today I read your Story and felt it helped me feel like I'm not the only one. I too struggled throughout life but feel it only made me stronger. I'm confident that I can take care of Maggie and love her with all my heart but I struggle. I don't know much about DS so I've been kinda floating through the internet googling for information.

It just feels good to know that someone out there can understand how I feel. I hope to hear from you. If you know any ways to talk to other mothers that have children with DS on the computer let me know. I'm not sure what to expect from Maggie although we just learned that her heart, hips and stomach are doing ok. She does have problems eating and breathing so our next step is GI. Thank you for your time.

Dear Michelle -

I am so happy you wrote to share the news of the birth of your daughter Maggie. May God bless her and your family richly as you learn and grow in the years ahead!

I am sure that there are many readers here who want to congratulate you also - as well as noting some helpful links for a mom new to this very special challenge/privilege we share.

Also - don't forget to look at these beautiful pictures of moms with babies with Down syndrome:

Our Little Extras: A Mother's Day Down syndrome celebration

This is an album that's always open for more pictures - please send me yours.

All hail Morris' king for a day
Prom-goers cast votes for student with Down syndrome
June 8, 2008

Tim Sullivan had vacillated about his high school prom. First, he said he'd be there, then he changed his mind.

But when the valedictorian of their class at Morris Central School, Victoria Galbreth, asked him to be her date, he was suddenly very eager to go.

And he's elated that he did -- because his classmates voted Tim, who was born with Down syndrome, prom king that night.

"Everyone agreed that they would vote for Tim because he has no enemies, he is friends and friendly with everyone, and everyone just plain loves him," says teacher Joanne Telfer.

Tim is a really popular guy in school, agrees Victoria, who has known him since grade school.

He loves dancing, and spent plenty of time at the event moving to "Dancing Queen," "Cotton Eye Joe" and tunes from "Grease" with Victoria, prom queen Kaitlin Meyers, and many other friends.

"Tim was dancing all over the place," says Victoria, who will enter Elmira College in the fall for biology, with pre-med in mind. "I had to steal him back a couple times". . . .

"He's very outgoing, very into theater and arts," Brigid says. "He enjoys being part of the community and going to cast parties."

Read entire article here.

Thanks, Tony for sharing this!

Since it's not my habit to write on planes, I had stowed my laptop in my suitcase. But when inspiration strikes, a writer doesn't want to postpone it, so I pulled out a steno pad and spent the next two hours scribbling 1250 words on the situation.

That article - now cut to a respectable op-ed word count of 800 under the guidance of a wonderful editor who gave me perfect directions - appears in tomorrow's Christian Science Monitor. In addition, there is an audio interview in which I appear to be out of breath, which is how I often sound when I'm excited to talk about something, I'm afraid.

Here's a tease to get you there:

Including special-needs children in class: Is it worth it?
Alex Barton's story is tragic. But the blessings are real.
By Barbara Curtis from the June 10, 2008 edition

Waterford, Va. - Recently, a Florida teacher seeking relief from a challenging special-needs student named Alex Barton did the unthinkable: She stood him before his kindergarten peers and encouraged them to say what they didn't like about his behavior. Then she asked the students if they wanted him back in class after his reportedly disruptive actions earlier that day. By a vote of 14 to 2, they booted him.

Alex's mom was understandably outraged; she plans to sue. The resulting media sound and fury has brought to light the quiet revolution in public schools across America: the placing of special-needs students into regular classrooms.

Federal law holds that children with disabilities have a right to a "free and appropriate public education." But free for whom? Not for the taxpayers, who must foot the bill for the testing, evaluation, special therapy, and classroom support needed by the differently-abled students, who are increasingly popping up in classrooms.

That has parents everywhere asking themselves an uncomfortable yet critical question: Does the practice of inclusion detract from my child's education? Is it really worth it?

Read entire article here.

Please keep in mind that with 800 words, I cannot tell the whole story of inclusion - just pique people's interest enough to get them thinking and hopefully shifting just a bit.

But I also want to say that it is a joy to be able to publicly thank Jonny's first public school teacher - and the principal and school as well - who put all reservations aside and did their best to help Jonny reach his potential.

While Alex and his family have had the opposite experience and have suffered, I can only hope that because they shared their experience, a discussion will begin which will mean a brighter future for Alex and many other children as well.

It's like any other adoption in terms of enlisting the help of an agency and getting a home study. Catholic Charities helped us with two of our adoptions - in California they waive charges for children with special needs or other difficult-to-place children (older or with siblings). I believe that is also the case with state agencies.

There are organizations that specialize in matching children with Down syndrome to welcoming families. For international adoptions, visit Reece's Rainbow.

For domestic adoptions, contact Robin Steele at the Adoption Awareness Program. While Catholic Charities was responsible for our home studies, Robin is the hub of a network of people and often finds out within hours of birth children with Down syndrome who will be up for adoption. I found out about Jesse - our first adopted child - through Robin the day after he was born. We were almost finished with our home study and you can believe we finished it very quickly :) Unfortunately, since Jesse's parents gave him up to the state of California, it took two months for us to be approved to bring him home. In the meantime, he was in short term foster care.

Jesse's 13 now - and was worth every day we waited!

Here's the story of another family with a daughter with Down syndrome who recently adopted another:

Family's joy keeps growing
Rob and Wendy Saunders of Yorktown have four children, two of whom have Down syndrome.

By SHANNON HUMPHREY, May 30, 2008

When Wendy and Rob Saunders saw Macey, 3, for the first time, they knew that she was their daughter. Parents of three children already, the Saunders decided to adopt Macey through Reece's Rainbow, an international orphan ministry that helps locate children with Down syndrome who are available for adoption.

"When we arrived at the orphanage in Ukraine to start the adoption process, we were amazed by what we saw," Rob said. "The children were playing outside in the dirt. All they had on was a hat and underwear. It was so different from what we were used to seeing."

The adoption process began in March 2007 and was over by July, with Wendy and Rob returning home with Macey on Aug. 17. The Saunders' youngest child, 4-year-old Carley, who also has Down syndrome, was one of the most excited with the new addition to the family.

"When we got back home, Carley said to us, 'Thank you for my sister, I love my sister.' She was so excited," Wendy said.

Read the rest of the Saunders family's story here or at Wendy's blog - The Saunders Gang.

However, it occurred to me that because he has an IEP, indicating Special Education, it is possible that he doesn't want to be called "special"... therefore his repeating, "I'm not special". Maybe the other children have been making fun of him for being "special" (unfortunately, I have seen this happen to special education students of all ages).

Just a thought for consideration. Either way, it is heartbreaking. I appreciate what you are doing to try to help this family.

I got a similar comment from another reader, so thought I'd toss it out for discussion.

What comes to my mind is how we have used the word "special" to define all children beginning as toddlers, when Barney tells them they are "special" - as well as numerous inspirational/religious videos aimed at kids.

I think the introduction of the term Special Ed comes later, so my guess is that this is not what Alex meant.

Still thought it was worth throwing out there for discussion.

By the way, I have advocated for many years that instead of trying to build children's self-esteem by telling them they're special, that we give them the dignity of feeling useful bu teaching them to help in whatever capacity they can. True self-esteem comes from doing something for others.

Further thoughts:
Elisabeth Elliot on self-esteem

Praising children's efforts - the Montessori approach

Thanks to my son Josh for sending this!

It's unfortunate that this incident has fueled more debate on the sensation actions of the teacher, which we all agree are deplorable and unacceptable, rather than on the real issue of children with learning disabilities being integrated into the regular classroom.

First, lets keep in mind that this teacher has no certification in caring for an autistic child. This doesn't excuse her behavior, which is just a lack of basic common sense. But it does highlight that most teachers are not trained and not capable of handling mentally impaired children.

Second, we need to focus on how this child disrupted this classroom and impacted the learning of other children. Is it fair to those children that the teacher must focus all their energy on the impaired child and they be disserviced. The vote was 14-2, so lets be clear here, this was not an isolated incident and this child had an ongoing problem with the teacher and his classmates.

Finally, shame of Melissa Barton for the abuse she has placed on her own child by placing him in this situation. While I cannot begin to understand what it must be like to be in her shoes, I do know that if it was my child I would not refuse to acknowledge that my kid has an impairment and that he needs special help. Placing a child like this in an environment unprepared to handle him is just as abusive and inexcusable as the teachers actions in the classroom.

I agree that this specific incident has opened up a wider discussion - which has needed to take place for a long time, and which I'd already approached an editor or two about. I have an op-ed currently under consideration at a few newspapers, but if it isn't picked up by the print media, I will publish it here.

So I will just briefly open the discussion on Mr. Daly's points and then let others chime in.

• I'm glad we're in agreement that no matter the circumstances, the teacher's actions are absolutely indefensible.

• The issue of inclusion of children with different abilities is somewhat similar to the breaking down of racial divides in public schools some decades ago. Somewhere at the top, there was an understanding that breaking down the walls of prejudice meant starting early. I know there are lots of new readers here right now, but those who've been around for a while will understand this is a constant theme at MommyLife: that the early years are full of windows of opportunity for the child to be encouraged in potentials which will produce a healthier, happier child and a better society. As a Montessori teacher and mother of 12, I know this to be true.

• Just as children are not born racist, they are not born with prejudice against the disabled. Curious, yes. Prejudiced, no. Children look to the adults around them for cues to respond in different situations, so when they see a person in a wheelchair, for instance, they may be concerned or standoffish, but only as they are waiting for cues on how to respond to a new situation. Same thing at the playground or in the classroom.

• We live in an idealistic nation. It is our idealism which brought us out of hateful systems still practiced in other countries. It is our idealism which carries us forward.

Mr. Daly, I don't know how old you are, but if you over 50, you probably grew up without any contact with people with disabilities as they were put in institutions, where they were managed with drugs and usually largely neglected - let without toilet training, etc. If you are under 50, you may have had "Special Ed" kids at other schools in your district, or in trailers behind your school where you saw them only coming and going.

Because we live in a nation built on values of compassion and caring, this antiquated system is in the process of being rethought and restructured. But just as with desegregation, this is not always a graceful process. There are ugly moments - only a few of which make national headlines - like the Florida case. Others causing individual families much anguish go on all over the nation each day as the wheels turn toward fulfilling the law (Individuals with Disabilities Education Act - IDEA) as it has been handed down regarding the right of differently-abled kids to a free and appropriate public education like their peers.

• Which is why your comments about Melissa Barton are so wrong. Every parent with a differently-abled child in public school who has been through injustice and frustration with teachers and administrators not doing the job they are paid to do in providing this education (through an Individualized Education Plan) is grateful beyond words that an incident has finally captured media attention so that we may make some advances in public awareness.

We all understand the additional burden placed on Melissa and Alex and are grateful that they are willing to make the sacrifices - such as dealing with criticism and misunderstanding like yours - to help all of our children. With four kids with IEPs (since the birth of our son with Down syndrome 16 years ago, we have adopted three other boys with Down syndrome, one of whom has autism as well) I am grateful that by going public Melissa has helped put schools and teachers on notice that this kind of behavior is unacceptable and will not be tolerated.

Perhaps it might occur to you that a child who has been wronged can also have that damage reversed by seeing his mother crusading on his behalf?

• Mr. Daly, I do so wish that you could come to my school district and see how inclusion works. With four kids with IEPS - all of whom have different ranges of abilities - I have four different situations in four different schools from kindergarten to high school. These have not happened easily. I have fought like hell for a couple of them. But what you need to know, Mr. Daly, is that where the schools have done what they are legally required to do - to set up an Individualized Education Plan and to provide proper classroom support - the results for EVERYONE in the classroom are beautiful in a way which those without that experrience will never understand. This is a far more important part of the human curriculum than any education frameworks or standards of learning could provide.

If you interviewed the general ed teachers of all four of my sons, you would hear them say - most likely with tears in their eyes - that having a differently-abled child in the class has been a blessing rather than a burden.

First of all, if a student brings an assistant into the classroom (proper support), that means an extra pair of hands to help the teacher as ideally the assistant is not stuck like velcro to the child but present to assist or modify curriculum when needed.

Second of all, a classroom of 22 actually holds 21 teachers. This is a Montessori way of looking at things, but I think anyone who works with children can see that part of our education as human beings involves helping others and teaching what we know. If we took better advantage of this we wouldn't need artificial elf-esteem programs as children who reach out to and teach others have a strong sense of self-worth.

One example: although my ninth-grade son Jonny cannot really read (but he sure can type in stuff like Egypt and Pyramids to google for images, print them and produce a report), he is in a general ed history class. At a recent meeting preparing his program at our local high school (10-12 grade), when there was blaking about his being in a general ed class there, the history teacher became a fierce advocate as she shared that not only was Jonny growing educationally and his imagination soaring, but he was an unmatched asset in the class. Her pairing of him with a kid with an attitude problem had changed that student's direction, giving him a chance to see himself differently.

• Full inclusion is not for every student. One of my children needs a smaller, more protected environment. That's why the IEP process is important. And parents need to be sensitive to the fact that we shouldn't push for full inclusion for political reasons when it's not truly best for our children.

On the other hand, school systems have in many cases responded to the IDEA by hiring more and more administrators who seem to interpret their main responsibility to be denying appropriate training, support and services so that parents end up dragging through months of the evaluation/IEP process, showing up to meetings where they hear about their kid's limits rather than his potentials. In my 11-year history with 4 boys in two state school systems, I have had a lot of experience, but it was only in the last couple of years after having a truly neglectful teacher that I educated myself as to our rights. Only then was I able to advocate effectively for each of my children.

But it wasn't easy. And it should be. The laws regarding the education of differently-abled children are wonderful (and I recommend Wrightslaw training for every parent of a child with a disability) - but unfortunately, many educators are ignorant of the law themselves or they are operating on their own prejudices about the limits of the disabled population.

They still tend to see kids with disabilities as burdens. After all, they – like you, Mr. Daly – often grew up without contact in their classrooms with the differently-abled. They have no personal experience. They are close-minded and set in their ways.

• It is up to parents to educate themselves and educate their school systems. I know this is difficult as parents of kids with special needs are already doing more than most parents can even imagine. It seems unfair: with one giant responsibility comes more.

Not everyone is up to that task. So we all thank Melissa Barton for representing all of us. And Mr. Daly, I don’t know if you have children or grandchildren, but I would remind you that anything can happen. You may have a “perfect” child who someday becomes disabled. Or you may someday have a differently-abled grandchild. You may feel differently then about the people who have worked hard in the face of misunderstanding and opposition to secure the rights those dear to you will be ale to enjoy.

• Finally, I want to return to the idea that those of different abilities who are entitled to and share public classrooms with a couple of items I’ve written before. Though they are specific to Down syndrome, we can generalize from them:

The first is about my son Jonny:

His preschool teacher named him Ambassador of Goodwill. His public school kindergarten teacher, after 30plus years of teaching, said she'd never seen children as loving and caring as Jonny's classmates. The secret, she said, was Jonny. When he graduated from her class, she wrote us: "As the Bible says, "The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart." Jonny certainly taught the children and me to look at the heart; for he has a very big heart!"

        Both confirmed what I'd seen all along. Jonny has a way of breaking the ice before others can think too long about their response to a child who is - well, just a little different. Then he brings out the best in them.

        In fact, I bet some people would rather spend a day with Jonathan than with the experts who comment on his right to exist. There's Princeton professor/ bioethicist Peter Singer, urging the right (or duty) of parents to terminate the life of a disabled child - up to 28 days after birth. Or Bob Edwards, world-renowned embryologist, predicting it will soon be a "sin" (his term) for parents to give birth to children with disabilities.

        This would seem a giant step back for our enlightened society, which a generation ago ceased banishing children with Down syndrome to institutions, making it possible for them to grow into productive members of society. In a culture working overtime to root out prejudice and prosecute hate, these "expert" voices sound suspiciously Supremacist.

        But maybe it's just that they suffer from their own undiagnosed disabilities - blinded by a caste system of individuals based on I.Q., educability, and earning potential. Paralyzed within their "perfect" paradigms.

        Having a child with Down syndrome has helped me see there's infinitely more to life than intelligence, beauty and "perfection." It's also taught me that not everything can be measured in dollars and cents - the benefits of full-inclusion extend beyond a child with Down syndrome to his classmates, teachers, family and friends.

        Before Jonny's birth, I'd prepared announcements with a line from Elizabeth Barrett Browning: "God's gifts put man's best dreams to shame." I sent them proudly, adding a note about his extra chromosome and our great love for him. (One friend's comment: "Well, Barbara, he'll never be president, but isn't that just as well?" And this was 1992!)

        He's been a gift I never would have thought to ask for, bringing lessons I never knew I needed to learn. The greatest surprise is this: Our life together has been less about my helping him reach his potential than about him helping me reach mine.

        Sometimes when we're in a museum or a mall, in the middle of a good laugh, I catch someone off-guard, looking uncomfortable and standoffish. I know that as long as we live some will see Jonny as having a little less. I've learned he has a little more. And so does our world because he's here.

The second was from my thoughts on prenatal testing as a eugenics tool:

in our lifetimes there has been so much enlightenment concerning Down syndrome - so that instead of locking these children away in institutions, we now raise them at home to love and be loved by their families, their neighbors and their communities. They are included in classrooms with their peers. They hold jobs in the community - and study after study reveals that where they are on the job, employee morale is given a big boost.

They are even homecoming kings and queens:
My favorite: Homecoming king crowns twin brother.

How could these people who our society so fears that it spends vast amounts of money researching and testing to eliminate end up being number one in the hearts of their classmates?

My simple answer is this: because that's what they're all about. God is in the business of changing hearts, and a sprinkling of people with Down syndrome among us is one way he uses. If you have a family member or classmate or friend with Down syndrome, then God's been doubly good to you. But you probably already know that!

My eight "normal" kids are no angels (as anyone who knows us would tell you!), but people consistently remark on their kindness. Certainly, I can't take all the credit. Mostly, they are kind because they were part of the family team that's been raising four brothers with Down syndrome (one by birth, three by adoption). Each of us is different because of their presence in our lives.

What would happen in a world where Down syndrome was eliminated - so that parents could have "perfect" children who may grow up to be the furthest thing from perfect after all? The world would surely be a little less risky, a little more controlled. And a little less bright.

I guess this didn't turn out to be as brief as I planned :) But I hope it will start a discussion.

Sarah Palin, Governor of Alaska, recently gave birth to her fifth child - a baby with Down syndrome. Here's a little backstory:

Gov. Sarah Palin of Alaska is known for being attractive (a former pageant winner, she was featured in a Vogue photo shoot this year), forceful (her opponents have nicknamed her "Sarah Barracuda") and a possible running mate for John McCain. Challenging circumstances now also have made her a shining example of personal pro-life convictions.

In December, her doctor told her that prenatal tests indicated the child she was expecting in May would be born with Down syndrome, a genetic condition that stems from an extra chromosome and that impedes a child's physical, intellectual and language development.

Only one year into her governorship and with four children at home already, a child with Down syndrome would present serious challenges. Studies in the late 90s showed that more than 80 percent of prenatal Down syndrome diagnoses end in abortion.

Not only did Gov. Palin reject the idea of getting rid of her baby, but

In an e-mail she sent to relatives and friends the day of Trig's birth, she wrote: "Many people will express sympathy, but you don't want or need that, because Trig will be a joy…Children are the most precious and promising ingredient in this mixed-up world…Trig is no different, except he has one extra chromosome."

Source: Mom rejects abortion after Down syndrome diagnosis

Representative Cathy McMorris Rodgers - who just last year gave birth to a baby with Down syndrome - has launched the Congressional Down Syndrome Caucus.

Read the mission and goals at her website.

HT: Julana, Life in the Slow Lane.

Spring is here and the end of the school year is fast approaching. Yes, it's IEP season.

IEP meeting
Do you understand what your role is at IEP meetings? Do you know how to request that an IEP be revised? Do you know that the IEP must include measurable goals? Do you know that the school must provide you with progress reports on a regular basis?

Do you know the required members of your child's IEP team? Do you know who may be excused from IEP meetings, when, how? Are there circumstances when a child's IEP may be changed without convening an IEP meeting?

Does the IEP team have to address a child's behavioral needs in the IEP? Don't miss the special tip at the end of the newsletter.

It's time to take a closer look at the legal requirements of IEPs. If you have questions about IEPs, please look at our new multi-media training program, Legal Requirements of IEPs. The program shows you exactly what the law requires.

In this issue of the Special Ed Advocate you'll find answers to your questions about IEPs,and how to use tactics and strategies to get quality services in your child's IEP. You'll even find a unique way to introduce your child to the IEP Team.

See the entire newsletter here.

This is a terrific issue of Wright's Law's free monthly newsletter - which you can sign up for at their site.

With four kids with IEPs (for those new here, we adopted three boys with Down syndrome following the birth of our son with DS), I must admit I was overwhelmed in the beginning. I trusted school personnel to plan a good program for each of my sons.

We coasted through okay. But now I thank God every day that a couple years ago a teacher came along who was not interested in investing her best to help my kids reach their potential.

That, coupled with an administration that refused to respond to my alerts finally lit a fire under me. Putting aside book projects, I turned my attention where it should have been from the beginning - educating myself to become the advocate my kids needed and deserved.

Eighteen months later I can say that it's been a lot of work, but it's been worth it to get all four of my kids into true IEPs - that is, Individualized Education Programs.

I've learned that the law is on my children's side. That's why the I in IEP - and Individualized has become a beautiful and empowering word for me in dealing with public schools, where many people who care and are doing the right thing by our kids are often thwarted by those who are stuck in the status quo.

Don't get me wrong. I know it's not an easy thing to be in special ed these days. A program designed to help children with disabilities is being stretched and pulled by more and more demands for IEPs for children without specific syndromes or diagnoses. The need for school districts to protect themselves has led to TONS of paperwork, putting an excruciating burden on teachers who were trained to and would rather be working with kids than trying to fulfill ever more ridiculous demands for documentation.

(The Virginia Alternate Assessment program has gone way beyond ridiculous and is crippling teachers with unreasonable paperwork taking months and months or preparation - way beyond the week of SOLs required for the general ed population.)

So wouldn't you think that teachers who care and are working conscientiously for the good of their students would be upheld and supported by administrators who make more money while having little if any contact with the students whose disabilities their jobs depend on?

I know that's a novel idea, but why is it that the people who work the hardest delivering the services our tax dollars fund are the lowest people on the totem pole? And why does it often seem that the whole raison d'etre of administrative types is to deny actual services and staff support in the classroom, thus adding to the burden and strain?

Ah. You begin to see the problem with becoming an educated parent dealing with a school system which would prefer parents just go along with the flow :)

But when you see your son with Down syndrome bringing home a report he did on his own on Egypt/King Tut/mummies because a teacher took the time to modify the curriculum and create a learning situation in which his imagination could soar - well, that makes it worth it.

If you're having an IEP meeting soon and don't know what you're doing, my advice is Do. Not. Sign. Take your proposed IEP home and talk to someone who knows more than you about what it all means. Call a parent who you know is a strong advocate. Look up advocacy groups in your area (in Loudoun, that would be LARC).

Then begin the work, knowing it will take you at least six months - and maybe even a year to turn your child's education around. Just remember, no one cares about your child and his future like you do. Some teachers are phonies, And some care deeply, but are bound by pressures from higher-ups, who don't even want the teacher talking to you honestly about what your child needs. Some face backlash if they are too honest with parents.

The only way to know for sure your child's education is progressing as it should is to take control. And the only way to take control is to understand the law. The law is complicated, but you just take it a step at a time. You will find that often the people administering the programs don't understand the law as well as you do. That's very empowering.

While the law is complicated, the word I'm using most these days to arrange my children's education is simple: INDIVIDUALIZED. A student doesn't have to fit into an existing program. The program must be built to meet his individual needs. That's the IDEA law - they can only ignore it when parents let them get away with it.

Wasn't meaning to do a soapbox on this. But maybe someone out there needs to hear it. If so - and if you are just beginning - Godspeed on your journey!

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for more on Wright's Law, see What about "draft" IEPs?

You can see the photos and read the moms comments at Our Little Extras - A Mother's Day Down Syndrome Celebration.

Or watch the slideshow:

Please send me yours if you'd like to be included! The more, the merrier!