Disabilities
Rescue Squad Special needs registry - Purcellville
This is a local call-out from a town close to me (thanks, Suzanne) - but it got me thinking that all of us parents with family members with special needs should see if our local rescue department has a similar program. If not, you might want to get one started,...July 1, 2008 - 8:18 AM | Permalink | Comments (0) | TrackBack
Coming home from Camp Easter Seals
I said I was driving down to Harrisonburg today to pick up the Downzers (my four sons with Down syndrome - see Why I Call Them the Downzers) from Camp Easter Seals. What was I thinking? Harrisonburg is only halfway there. The camp is 4 1/2 hours away from us....June 27, 2008 - 8:08 PM | Permalink | Comments (2) | TrackBack
Down syndrome dolls - what do you think?
Sheena, from the UK, sent me this from The Times (London): 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....June 26, 2008 - 10:06 AM | Permalink | Comments (7) | TrackBack
Another Down syndrome prom king
If you're wondering "another?" - Just Google Down syndrome and prom king to come up with more. Here's the latest: 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...June 16, 2008 - 6:47 AM | Permalink | Comments (2) | TrackBack
Loudoun: Athlete 2 Athlete kickball clinic
My kids love Athlete 2 Athlete - a sports clinic that pairs differently-abled kids up with high school team players and cheerleaders for a day of individualized attention. It is really cool! See Something to Cheer About: Athlete 2 Athlete - and then, if you have someone in your life...June 8, 2008 - 11:14 AM | Permalink | Comments (0) | TrackBack
Being "special" and self-esteem
I, like so many others, was outraged and saddened to read about the terrible behavior of Alex's kindergarten teacher, not to mention the potential lasting effects on the child. However, it occurred to me that because he has an IEP, indicating Special Education, it is possible that he doesn't want...June 4, 2008 - 2:04 PM | Permalink | Comments (2) | TrackBack
Young man with Down syndrome rocks on So You Think You Can Dance
Thanks to my son Josh for sending this!...May 30, 2008 - 9:54 AM | Permalink | Comments (4) | TrackBack
Alex Barton: the whys and hows of inclusion
Tim Daly commented: 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...May 30, 2008 - 8:19 AM | Permalink | Comments (15) | TrackBack
Alex Barton voted out of kindergarten
Mom says teacher let classmates vote autistic son out of class By Colleen Wixon | Scripps Treasure Coast Newspapers 2:31 PM EDT, May 25, 2008 PORT ST. LUCIE - Melissa Barton said she is considering legal action after her son's kindergarten teacher led his classmates to vote him out of...May 25, 2008 - 8:59 PM | Permalink | Comments (18) | TrackBack
Special Ed, IEPs, Wright's Law, and empowered parenting
A brief excerpt from a free newsletter for parents of kids with special needs, followed by my soapbox :) 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...May 20, 2008 - 4:19 PM | Permalink | Comments (1) | TrackBack
Church bars severely autisic boy from Mass
Tracy asked what I thought of this and I'd like to know what you think: Church bars severely autistic boy from Mass After reading the story, I have to say I side with the church. There is a point at which accommodating disabilities begins to infringe on the rights of...May 19, 2008 - 10:31 AM | Permalink | Comments (11) | TrackBack
Prenatal diagnosis? Pressure to terminate? Read this first -
Running this again because it is an amazing and wonderful site which can help parents grieving and confused find clarity and peace of mind - through reading the journeys of others: BeNotAfraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories,...April 26, 2008 - 3:40 PM | Permalink | Comments (1) | TrackBack
Loudoun County Public Schools - school nurse problems
Once again, I have found myself in the middle of a mess with the school nurse who for the past two years been subjecting my son with disabilities to hyper-scrutiny and - I believe - a different standard than the general school population. (See Does this kid look sick to...April 24, 2008 - 8:41 AM | Permalink | Comments (1) | TrackBack
Speaking with parents of special needs kids Thursday 4/24
I will be speaking to a small group of parents at St. Andrew the Apostle Catholic Church in Clifton, Virginia This is a new group started by Catholic parents of children with special needs. Betty wrote me last week: We have a name for the group, now: Caritas Christi (Love...April 21, 2008 - 10:22 AM | Permalink | Comments (0) | TrackBack
99 Balloons - update from Matt and Ginny
Remember 99 Balloons? I ran it last year, but if you weren't here for haven't seen it - or just want to watch it again to be reminded of the tender beauty of life - here it is: Now, please go to the 99 Balloons Blog to get an update...April 12, 2008 - 3:30 PM | Permalink | Comments (2) | TrackBack
The IEP process: Wrightslaw equips parents
I've shared here about the exceptional work done by Pete and Pam Wright in untangling the IEP process for parents and equipping us to advocate effectively for our children. I was fortunate to attend a Wrightslaw seminar in our area last fall and would recommend it to any parent who...April 12, 2008 - 8:45 AM | Permalink | Comments (1) | TrackBack
Homeschooling special needs kids - your input needed
Laura left this as a comment, but I want to get some input from you all for her: My daughter is three. She was recently diagnosed with autism. The school did the evaluation, wrote up an IEP and recommended (and will not budge) a full day, six hour, five day...March 28, 2008 - 6:55 PM | Permalink | Comments (17) | TrackBack
Loudoun County Public Schools and beyond: hyper-vigilant school nurses?
I am currently having a problem - ongoing for two years - with one of the five schools my six kids attend in Loudoun County. This has to do with hyper-scrutiny of one of my special needs kids and way-too-numerous calls generated by the school nurse. Last year, I had...March 28, 2008 - 12:43 PM | Permalink | Comments (4) | TrackBack
Born with Down syndrome, in love with life
From the Fort Worth Star Telegram (thanks, Kendra!): Austin the amazing Doctors advised Austin Underwood's parents to expect nothing from their Down syndrome baby. Twenty-nine years later, he has proven them wrong. He's been to college, lives independently and, best of all, wakes up happy every day. By Mary Rogers...March 17, 2008 - 12:22 AM | Permalink | Comments (1) | TrackBack
Loudoun County - WaPo on Very Special Arts' new play
Speaking of Very Special Arts, the Washington Post LoudounExtra has a great "inside look" this morning : Cast Members Share 'Tale' of Purcellville History By Melissa Arseniuk Tuesday, March 11, 2008 When Meredith Bean McMath was asked to direct the 2008 Very Special Arts production, she went in with high...March 11, 2008 - 9:39 AM | Permalink | Comments (0) | TrackBack
Loudoun County: Very Special Arts - "The Old Homeplace"
For the past five years, my sons have participated in Very Special Arts - a unique collaboration of differently-abled individuals producing plays for Loudoun County. VSA has earned a great reputation in the community and the performances are usually sold out. It's a tribute to the goodness of the people...March 11, 2008 - 9:16 AM | Permalink | Comments (3) | TrackBack
Down syndrome - save lives, sign petition, please
From my friend Gloria in California: If you look around just about EVERYONE knows SOMEONE who has a child with special needs. Some of us knew before our child was born that there would be challenges, some of us gave birth to a typical child who later in life...February 25, 2008 - 9:59 AM | Permalink | Comments (0) | TrackBack
More good press on Down syndrome
Life with Anthony Thanks, Andrea, for the link!...February 22, 2008 - 8:35 PM | Permalink | Comments (0) | TrackBack
Autism - more than meets the eye
"It is hard to be autistic because no one understands me. People look at me and assume I am dumb because I can't talk or I act differently than them. I think people get scared with things that look or seem different than them." This was written by a 13-year-old...February 21, 2008 - 12:02 PM | Permalink | Comments (1) | TrackBack
Special Ed in Loudoun County: overcoming the bigotry of low expectations
This phrase came to mind as we were finally began dealing with the aftermath of Daniel's last year and a half in school: The soft bigotry of low expectations. My research revealed it was popularized when President Bush used it in a speech on No Child Left Behind. I...February 12, 2008 - 6:22 PM | Permalink | Comments (4) | TrackBack
Kids with disabilities need responsibilities too!
I ran this over a year ago - rerunning now for new readers and a reminder to lod ones :): Dear Barbara, I thought you might like this photo of my son who is nine and suffers from autism washing down the walls of our porch. I think you have...February 6, 2008 - 8:49 AM | Permalink | Comments (1) | TrackBack
Special needs kids - model search
From Parents magazine - looking for special kid models not just for articles on special needs, btw: Looking For Models Our photo editors asked us to reach out to you: We love that kids come in all different shapes, sizes, and abilities and it’s important to us to celebrate...February 3, 2008 - 7:14 PM | Permalink | Comments (1) | TrackBack
To moms and dads with special needs kids
I got hopelessly behind in answering my email in December - well, not hopelessly, but because Tripp is graciously feeding the children tonight and they are going to bed early because they have Special Olympics basketball tomorrow morning so that I can catch up. Anyway, I really want to thank...January 25, 2008 - 8:10 PM | Permalink | Comments (4) | TrackBack
Autistic student scores big time!
Grab your hankie! This from my firned Nilda:...January 25, 2008 - 5:28 PM | Permalink | Comments (4) | TrackBack
Waterford Elementary gets A+ on inclusion
Last Tuesday I had two meetings with two different Loudoun County elementary schools concerning inclusion issues for two of my sons with Down syndrome. In focusing on the inappropriateness of comments and emotional tone of a school employee at the second meeting, the wonderful, warm and positive tone of the...January 21, 2008 - 7:45 AM | Permalink | Comments (1) | TrackBack
Special Ed: Important info for parents
Who is Responsible for Providing FAPE? How to Document Your Concerns When You Disagree with the IEP Team by Pete and Pam Wright "My daughter has made little or no progress after years of special education. Her IEPs contain vague subjective goals and objectives. If our case goes to...January 21, 2008 - 7:38 AM | Permalink | Comments (1) | TrackBack
Memo to Loudoun Schools: Retarded is an "N" word
Anyone following the saga of the vice principal who used the words "mentally retarded" along with my son's IQ score in an attempt to sledgehammer me into submission - submission to the idea that Daniel is not worthy of/entitled to inclusion - will appreciate this timely intersection with reality today:...January 17, 2008 - 8:02 PM | Permalink | Comments (7) | TrackBack
Special ed in Loudoun - who hired this guy?
Another day away from home - taking Jesse to Baltimore to the Kennedy-Krieger clinic for his second visit with Dr. Capone ( a little name-dropping for parents with kids with Down syndrome :) I am feeling weary and sad this morning (see Special ed in Loudoun County - one parent's...January 16, 2008 - 7:42 AM | Permalink | Comments (19) | TrackBack
Special ed in Loudoun County - one parent's perspective
Today I will be attending important meetings at two schools my children attend in Loudoun County. [For new readers, I am a mother of 12 with four children with Down syndrome, three of whom are adopted - hence we are a family dealing with 4 IEPs and an unusual amount...January 15, 2008 - 8:25 AM | Permalink | Comments (5) | TrackBack
Pre-natal diagnosis? Be not afraid
You might want to bookmark this link from Eva - in case you ever have a friend who needs it - or if you have a story to share (there are some beautiful ones here!): Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal...January 11, 2008 - 9:40 AM | Permalink | Comments (5) | TrackBack
New site for lives touched by disabilities
Came across this site, which looks high-energy, cheerful, and packed with all kinds of information, help, advice - and lots of opportunity for community. Every disability affects more than one person. If your life or that of anyone you know has been touched by disability, you will want to...January 8, 2008 - 11:28 AM | Permalink | Comments (1) | TrackBack
How a young man with Down syndrome is making the world a better place
I ran this last spring, but a couple of people have sent me the link and so I guess it's time to run it again: A very sweet movie about a young man with Down syndrome who's found more purpose in his life - and could teach us all a...December 27, 2007 - 6:07 PM | Permalink | Comments (2) | TrackBack
My life - quick and random thoughts
Is anyone out there reading? Just wondering if you are as busy as I've been. A lot is going on with my kids and they come first. But I'm always thinking, "Oh, I'd like to blog about this.. . " Last night Jonny had a party with a bunch of...December 22, 2007 - 9:12 AM | Permalink | Comments (10) | TrackBack
Parenting Q & A: how to treat people with special needs
Barbara, I love reading what you write about your kids and I've learned a lot about Down syndrome through your blog, and about valuing all sorts of people. But, when I was talking to my husband recently, we agreed that we really didn't know how to act around people who...December 15, 2007 - 8:53 AM | Permalink | Comments (8) | TrackBack
Inclusion: help for DC/northern Virginia parents
Optimizing Your Child’s Access to the Educational System When: Saturday, January 12, 2008 Time: 9:00 A.M.-3:00 P.M. Place: Fairfax County Government Center 12000 Government Center Parkway; Room 7 Fairfax, VA 22035 This seminar will feature three separate “mini” seminars all in one day!! Please join us for one, two or...December 14, 2007 - 12:58 PM | Permalink | Comments (0) | TrackBack
Inclusive Schools Week
The brainstorming session I'd requested at Waterford Elementary School to discuss ways to increase school and community awareness of the benefits of inclusion - not just for those with special needs, but for everyone - hit some setbacks due to scheduling conflicts among the attendees, including a death in...December 7, 2007 - 10:50 AM | Permalink | Comments (0) | TrackBack
Do we over accomodate for children with disabilities?
I attended a Wright's Law workshop in October and can't begin to tell you how much it improved my advocacy knowledge/skills/confidence on behalf of my four boys with Down syndrome. For years I trusted school professionals to plan my children's programs. With four IEPs to manage, I just felt overwhelmed...December 7, 2007 - 8:26 AM | Permalink | Comments (3) | TrackBack
Children with Disabilities? You need to plan ahead
Those of us with kids with disabilities have to work pretty hard - what with IEPs and doctors and specialists - but we also have to plan ahead more carefully for our kids, who may not be completely independent when it is time for us to leave. Planning ahead really...December 6, 2007 - 12:20 PM | Permalink | Comments (0) | TrackBack
An open letter to Loudoun County Parks and Rec
Last year our four sons with Down syndrome began playing Special Olympics basketball in Loudoun County. This program, under the leadership of an exceptional coach named Dan Dillon, is the most efficiently run programs my boys have ever participated in. Coach Dillon has run the program for many, many...December 1, 2007 - 12:13 PM | Permalink | Comments (5) | TrackBack
Do mothers of big families and/or kids with special needs face more judgment? Take 2
A few weeks ago I posed the question: Do mothers of big families and/or kids with special needs face more judgment? Here is a response from a woman who grew up in a big family: Barbara, I do feel that mothers of large families are judged more. I am the...November 16, 2007 - 9:52 PM | Permalink | Comments (2) | TrackBack
Mr. Rogers on disabilities - and other wisdom
A reader named James emailed me and I was intrigued by his tagline: Part of the problem with the word disabilities is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who...November 16, 2007 - 8:44 PM | Permalink | Comments (3) | TrackBack
New movies about siblings with special needs
I want to thank the creators of the following two independent films for sending me review copies. It was a privilege to share such personal journeys with two people - now grown up - whose lives were shaped in many ways by the existence of a sibling with special needs....November 15, 2007 - 2:16 PM | Permalink | Comments (4) | TrackBack
For mothers of kids with special needs
This was written for mothers of kids with autism, but any mother of a child with special needs will relate - or for that matter, probably any mother :) Found at Different Worlds: Online support for parents of children with Asperger's syndrome or Autism Spectrum Disorders I am for mothers...November 15, 2007 - 2:00 PM | Permalink | Comments (0) | TrackBack
Virginia Special Ed regulations - proposed changes
If you have a child who receives Special Ed services in the state of Virginia, you need to attend this meeting to hear how the proposed changes to the state regulations would impact your family. In a nutshell, Virginia currently offers more parental rights than the federal regulations. Legislators have...November 8, 2007 - 8:00 PM | Permalink | Comments (0) | TrackBack
Special education in Loudoun - one battle won
[This is very long, so you will need to click at the bottom to read it all] I had two meetings yesterday with two different sets of Loudoun County Public Schools staff/teachers/administrators to talk about two different issues I'm working on with two different kids. The first one involved some...November 8, 2007 - 1:00 PM | Permalink | Comments (9) | TrackBack
Loudoun County Public Schools - calling all Special Ed families
I had the distinct misfortune Friday of taking one of my kids back to school after his annual physical. I say distinct misfortune because I was absolutely devastated upon seeing his classroom - and feeling guilty that in focusing on a couple of my other kids' needs I neglected seeing...October 27, 2007 - 3:51 PM | Permalink | Comments (5) | TrackBack
Do mothers of big families and/or kids with special needs face more judgment?
You know those Life Comes At You Fast commercials? They could have been written with moms in mind. Last week my travels got me behind. This week, it's my life as mommy. Took Jesse and Justin for their check ups yesterday with the most wonderful pediatrician in the world (at...October 25, 2007 - 6:29 AM | Permalink | Comments (27) | TrackBack
Starting a church group for parents of kids with disabilities - reader needs your input
Hi Barbara, I had emailed you a month ago, or so, about our daughter Tullie who has Down Syndrome. We go to a large church in Seattle. It's also a very young church, the average age of an attender being 25ish. Tullie was the first child (that we know of)...October 23, 2007 - 11:21 AM | Permalink | Comments (7) | TrackBack
Life planning for kids with special needs - northern Virginia workshop
Special Education Parent Resource Centers and The Arc of Northern Virginia present LIFE PLANNING TOOLS “Looking Ahead - Experience and Explore Your Child’s Future: Options for Children with Disabilities” When: Saturday, November 17, 2007 from 9:00 am to 2:30 pm Check-in will begin at 8:00 am; a complimentary light breakfast...October 22, 2007 - 9:03 AM | Permalink | Comments (0) | TrackBack
Special Education - law and advocacy
Parents of children with disabilities, you need this! Parents, educators, advocates, and attorneys come to Wrightslaw for accurate, reliable information about special education law, education law, and advocacy for children with disabilities. After years of being a happy camper parent and signing on the dotted line of four children's IEPs...October 13, 2007 - 10:10 AM | Permalink | Comments (0) | TrackBack
Patrick Henry Hughes - transcending "disabilities"
Kathy sent me this to share here - an inspirational story that illustrates what I keep repeating: While we designate some people "disabled" - and many privately think of them as somehow "less than" - we are all just differently-abled. Here is a young man who has accomplished more than...October 13, 2007 - 9:59 AM | Permalink | Comments (2) | TrackBack
Tribute to a son with cerebral palsy
Our family (Tripp, Ben, Zach, Sophia, Maddy and I) have been working our way through Orson Scott Card's Ender's Game series. While I'm really not a big fan of fantasy - other than the Rings Trilogy and C. S. Lewis's Space Trilogy - I do love intelligent philosophy-driven science fiction....October 9, 2007 - 12:52 PM | Permalink | Comments (3) | TrackBack
Theology and Down Syndrome: Reimagining Disability in Late Modernity
I am so excited! Those of you who know me well will understand why when you see this book which is coming out November 1: Theology and Down Syndrome: Reimagining Disability in Late Modernity I have ordered this book and will be reviewing it. In the meantime, here''s a little...October 8, 2007 - 8:19 AM | Permalink | Comments (3) | TrackBack
On prejudice, disabilities, and hypocrisy
From Marie as a comment - but this merits its own discussion: Barbara, this is WAY off of everything else being posted...but when this first happened with your neighbors (last year) and when you first started making noise about enrolling one of your downzers...weren't you still very overweight?? I think...October 1, 2007 - 8:27 AM | Permalink | Comments (5) | TrackBack
Bill seeks support for parents of children with Down syndrome
Over ninety percent of parents abort their children after receiving a pre-natal diagnosis of Trisomy 21.1 In an effort to remedy this, the Prenatally and Postnatally Diagnosed Conditions Awareness Act has been introduced to "increase the provision of scientifically sound information and support services to parents who receive a positive...September 29, 2007 - 2:36 PM | Permalink | Comments (1) | TrackBack
Special Needs Cheerleading Team on Good Morning America October 1
Back to the story on the Gaithersburg, MD very special cheerleading team Destiny, I just received the following message: Hi, I wanted to let you know that Good Morning America (ABC) will be running a story on Monday, Oct. 1 about the cheerleading team "Destiny" that my daughter Clare...September 29, 2007 - 8:52 AM | Permalink | Comments (1) | TrackBack
Disabilities and prejudice - working through it
I thought of this picture the other day. It's Norman Rockwell's The Problem We All Live With. I know when I posted a while ago that Justin was the first MR (the mentally retarded label used in Loudoun County) student to be enrolled at our local school, someone expressed...September 22, 2007 - 10:31 AM | Permalink | Comments (3) | TrackBack
Special Needs Cheerleading Teams bring out the best in all
From the Washington Post this morning: Girls Bask in Their Destiny - Cheerleading. Click to read the full story and see videos of two cheerleading teams performing and receiving awards. Who knew? There are now 160 special needs cheerleading squads in 34 states. Breakthrough in Socialization That cheerleading in particular...September 21, 2007 - 8:45 AM | Permalink | Comments (5) | TrackBack