Red Envelope Day

Did you get yours in the mail?



Here's the address:

President Barack Obama
The White House
1600 Pennsylvania Ave. N.W.
Washington , D.C. 20500


For more info: Red Envelope Day

Spreading the Word to End the Word

The "R" word that is. Is awareness the answer? I hope so.



Change begins with me and the little things I do to effect change.

My mother recently used the "R" word in conversation in my home. I know, one would think having a grandchild with Down syndrome would have some awareness...

A split second later, my sweet 16 y.o. typically developing daughter corrected her with a passionate "Grandma, that word hurts!"

Tears flowed - she just didn't know....


A personal message from John C. McGinley
Actor and father of Max who has Down syndrome




Hi, I’m John C. McGinley. I’m an ambassador for the National Down Syndrome Society, and today I’m teaming up with Special Olympics to bring you a message that’s important to me.

So many times in life you are asked to change…





Change your clothes. Change lanes. Change jobs. Change the sheets. Change flights. Change your tune. Change horses midstream. Change your latitudes and your attitudes!

Change, and the ability to adapt, is to the human condition as air is to the lungs.

We change, and in the doing, we thrive!

In fact, we just elected a president who promised, above all else, to “change.”

What if, on March 31, you elected to change the way you use the words “retard” and “retarded”?

Hardly seems like the largest of sacrifices. Not when you consider the changes in language that you have, so willingly, already elected to integrate into your vernacular. You no longer use the words nigger, or kike, or faggot, or jap, or kraut, or mick, or wop.

Why would you? Why on earth would you? Those are all words that hurt. Those are all racial and ethnic slurs and epithets that perpetuate negative stigmas. They are painful! And that is not okay. It is wrong to pain people with your language. Especially, when you have already been made aware of your oral transgression’s impact.

Make no mistake about it: WORDS DO HURT! And when you pepper your speak with “retard” and “retarded,” you are spreading hurt. So stop it. Stop saying “retard” and “retarded.” Those words suck! You are better than that and you definitely do not need to be “that guy.”

There is no longer any acceptable occasion to lace your dialogue with the words “retard” and “retarded.” Without fail, those words are the stuff of hurt. They, straight up, are. So, stop it! Stop using the “R-word.”

The 7 million people with intellectual disabilities (around the planet) who are on the receiving end of this hate speak are genetically designed to love unconditionally. These “retards” are NEVER going to return your vitriol. Ever! So what could possibly be the up-side of continuing to use the “R-word” in your daily discourse?

We love you. We do!

And, just in case you missed it and you need an extra hug? We love you!
You do not need to love us in any kind of reciprocal fashion. You don’t. (It’s not that kind of bargain.)

But, how about on March 31, you elect to change? A word? Two stinkin’ syllables?
On March 31, join us and “Spread the Word to End the Word.” And the word is “retard!” It HURTS! So help us to cut it out.

Thank you! We do love you!

John C. McGinley

Prayer of Commitment to the Sanctity of Life

by Georgette Forney of Anglicans for Life

Lord God, thank you for creating human life in your image.
Thank you for my life and the lives of those I love.
Thank you for teaching us through the Scripture the value you place on life.
Help me uphold the sanctity of life in my church and community.
Give me the strength to stand up to those forces that seek to destroy the lives of those most vulnerable, the unborn, the infirm and the elderly.
Today, I commit myself to never be silent, to never be forgetful of respecting life; I commit myself to protecting and defending the sacredness of life, according to your will.

Through Jesus Christ our Lord. Amen.

H/T Stand Firm

Visual and Verbal Memory and Down Syndrome

Growing Memory Skills in Young Learners with Down Syndrome

Children with Down syndrome are well-know for their relative strengths in visual memory and their deficits in auditory (verbal) processing skills. Auditory processing is a complex issue for our children with Down syndrome. In this post, I’m going to concentrate on the short-term auditory memory aspect of our children’s difficulty in auditory processing. It is something tangible we can work on in our everyday interactions with our children.

Let’s take a moment to define what we are talking about:

Visual Memory refers to remembering what you see

Auditory Memory refers to remembering what you hear.


These activities are actually exercises meant to strengthen memory skills!

Activities to Strengthen Processing Skills

Activities for young children should be fun and engaging. When choosing activities, start with the lowest level of difficulty to gage your child's skill level . We want our children to be successful with the following memory skill builders or “games.”

As you begin memory training, your child may need cues to be successful in completing tasks. They may need to learn the game so give them plenty of practice learning the games. Build to higher levels, increasing in complexity, as your child finds success.

Remember, that sincere appropriate praise is a great motivator!

Visual Memory Activities

Visual Memory is a relative strength in children with Down syndrome. This channel is not completely intact so working to strengthen visual memory is important.

Concentration Games
You will need two sets of color cards: make a sequence of two color cards (red-blue). Have the child look at these for a few seconds. Then turn the cards over. Given some other cards, she must pick out the two that are hidden. Increase to three and more colors as she is ready. Variations: Play with objects, number cards, letter cards, picture cards, or block shapes
Another variation of the above game: Use one set of color cards. Make a sequence of two colors (ie. red-blue). Allow your child to look at these a few seconds. Then turn the cards over. She must then touch each card and tell you orally what the card color is before turning it over to check. Again this can be played with objects, number cards, letter cards, picture cards, or block shapes.

Games marketed under the trade name Memory - or make your own. This games involves pairs of pictures-shapes, letters, colors, animals etc. The cards are placed face down. Pick a card and try to remember where its match is located. Start with just a few pairs and build as skills allow.

What's missing? Place 2-3 objects or pictures in front of your child. Have him/her look at the group and name each object. Have the child close his/her eyes, remove one object. Identify the missing object. Increase the level of difficulty as your child's skill level improves.

Identify what is missing from known objects drawn on paper. For example, draw a face without a nose and ask what is missing.

Sequencing & pattern activities. Reproduce patterns of colors, shapes, pictures. Continue a pattern after several sets are given.

Hide the peanut or some other treat. Hide a peanut under a cup. Use a set of two or three cups and your child must find the peanut after you slowly move them around.

Recreate drawings from memory. At the beach or create your own "sand box" with sand or salt poured into a flat container. Draw a simple picture, letter, shape, wipe it away, and have your child recreate the drawing.

Auditory Memory Activities

Children with Down syndrome have deficits in short-term memory. They have a difficulty remembering what they hear which leads to delays in talking, processing spoken language, for reading and math. (1)

These activities should help to strengthen verbal short-term memory skills.

Repeat a sequence of two numbers given verbally. Have the child repeat what you say. Increase to three and more as he/she is able. Variation this can be played with names of people, animals, toys, verb words, and letters.

Note: When my daughter was young we found repeating numbers to be confusing to her. She had difficulty ordering numbers in the proper sequence for what seemed to be a long time. We only played auditory memory games with the variations found above.

Verbal Commands. Place some toys in another room. Tell the child to get the doll. The child has to hold the command in her memory and bring back the doll. If she can do one toy, tell her two toys to bring back.

Given three pictures, you verbally tell the child what order to put them in.

Tell the child to clap his/her hands. Then give her two commands to do (clap and jump) Work up to giving her a sequence of three things to do.

If the child can draw, tell him/her to draw items. Keep them simple at first: a red ball, a green square and so on. Increase in complexity over time. The child will have to hold the instructions in their memory as they complete the task.

Repeat a series of sounds: Clap, Clap increasing in number with success, ie. Clap, Clap.....Clap

Create an obstacle course in your house or outside! Describe the way you want your child to go through the course in 1, 2, or 3 parts depending on his/her developmental level. For example, go around the chair, jump over the pillow, crawl under the table.

Act out simple stories/nursery rhymes. Read a simple story or nursery rhyme and act it out or have him/her tell it back to you sequentially. You may have to break the story down after reading it to your child until his skills increase.

Play the shopping game. Ask the shopkeeper (your child) for a series of food items. Begin with one or two and work higher as he/she progresses. Let them help you remember your list when you visit the grocery store.

Treasure Hunt. Have your child retrieve a series of "treasures" from another room.

Sequence activities of daily living. Repeat the activities of the day or an activity with several parts and have your child "help" you with what comes next. This will seem quite natural when relaying the days events to daddy over dinner.

Helping around the house. When preparing dinner have your child get a list of needed items i.e. salt, pepper, napkins, for the table. Repeat the series as needed to encourage success.

Repeating sentences. Start with simple phrases and increase length of utterances. For example, red ball or brown chair. As skills improve-The big ball is red. The brown chair is hard. If your child hears well, make it fun and whisper.

Teaching organizational skills will also help with memory skills. In the early years teach sorting by color, shape, & size. As they sort according to classification i.e. food groups, function, etc. Don't forget oddity tasks...what doesn't belong to a certain group.

For more information:

1. Down Syndrome Issues and Information, Memory Development for Individuals with Down Syndrome by Sue Buckley and Gillian Bird

2. Early Communication Skills for Children with Down Syndrome by Libby Kumin

3. Earobics Software to improve processing deficits

Resources for Reading

These recommendations were compiled based on parent opinions from several e-mail lists and research into how children with Down syndrome learn to read. Feel free to e-mail me with any questions or suggestions.

Reading for Children with Special Needs/Visual Learners/Down Syndrome

Early Readers
Bob Books
Early sight word readers
Rittenhouse Publications
Color-coded word families
Dick and Jane Series
Sight word books with repetition of frequently used words
Wilbooks
Inexpensive readers with repetition

Readers for Children with Special Needs
Greenhouse Publications
Interactive sight word readers
Special Reads for Special Needs
Sight word readers
Down Home Learning
Sight word readers taught on 3 levels - created by a parent of a child with Down syndrome.
Love and Learning
Sight word program – video/DVD


Software
Developing Child
A flash card sight word program for early learners
Flashcards from Geddes Productions
Flashcard program that can be customized
Essential Skills
Sight words and phonics
Edmark Reading Program Level One and Level Two
Sight word reading curriculum for children with special needs.
Flash Series

Reading Curriculum for Children with Special Needs
Edmark Reading Program
Reading (sight word) curriculum for children with special needs.
Reading Milestones

Reading Curriculum Designed for Children with Down Syndrome
See and Learn
From The Down Syndrome Educational Trust – Online program in pilot phase.
Cataphonics
Phonics program developed by a mother to a child with Down syndrome
Special Reads for Special Needs
Sight word readers created by a parent with a child with Down syndrome.
Down Home Learning
Sight word readers taught on 3 levels. Created by a parent of a child with Down syndrome.
Love and Learning
Sight word program – video/DVD
Special Offspring Series
Developed by a parent with a child with Down syndrome
POPS Resources
Down Syndrome Foundation of Orange County
Online literacy and math activities to download.
eReadingPro

Developed for Typical Learners, Used with Success in Some Children with Down Syndrome
Hooked on Phonics
Teach Your Child to Read in 100 Easy Lessons
Phonics based
Your Baby Can Read
Sight word program
Thrass
Jolly Phonics
Reading Reflex

Online Reading Programs
Starfall
Early reading based on word families

Online Picture Symbols - Visual Aides in Reading
Do 2 Learn
A wealth of picture symbols
Beyond Autism, PECs, pictures, icons pages
A compilation of sites for picture symbols

Picture Symbol Software
Boardmaker
PixWriter
Writing With Symbols
Picture It
Overboard

Video/DVD Reinforcement
LeapFrog
Your Baby Can Read

Cueing - Another Visual Aide
Visual Phonics
Cued Speech
Tucker Signing Strategies

Other recommendations for visual learners
Fletcher’s Place
Picture Me Reading


Resources
For teaching children with Down syndrome to read:

How to Teach Your Baby to Read by Glenn Doman
Successful method for children up to 3 years of age
Teaching Reading to Children with Down Syndrome by Patricia Oelwein
Reading program for children of typical school age
The Development of Literacy Skills in Children with Down Syndrome: Implications for Intervention
Margaret Snowling, Hannah Nash and Lisa Henderson

Homeschooling and Children with Down Syndrome - IEPs

Every summer I take the time to write and Individualized Education Plan (IEP) for the upcoming school year. Because my daughter has Down syndrome, she does not learn at the same pace or in the same way as typical learners.

I find creating and IEP helps to keep me on track and focused on meeting my child's needs in thoughtful, reasoned way. A few days during the summer focusing on setting goals, breaking down skills - creating a plan for the coming year sharpens my sense of where we have been, all that my daughter has accomplished and where we are going.

Are IEPs required for those homeschooling children with special needs?
There is no legal requirement for homeschoolers to create an IEP for their child with special needs.

Doesn't every homeschooled child have an IEP?
There is a certain amount of truth to this statement. Homeschooling does provide an environment where each child receives and individualized eduction based on how they learn and allows them to learn at their own pace. IEPs are intentional in thought and purposeful in achieving individualized goals for areas of weakness and any deficiencies in academic skills.

Why write and work with an IEP if it's not required?
Developing an IEP for children with special learning needs is beneficial to the parent and the child with special needs.

1. It allows us to plan goals for the future and ways to meet these goals.
2. It allows us to break down goals into short-term objectives (more manageable pieces)to implement our plan for the child.
2. It also provides for instructional direction. What are we going to concentrate on this day, week, month, year. The IEP allows us to address how we going to teach skills and concepts.
3. It is documentation of your child's progress in the event of inquiries.

I create simple checklists for the skills/concepts we are working on. When a skill/concept is consolidated, I get the simple pleasure of dating it and checking it off!

Sounds time consuming - Is it worth the effort?
For me, it has been a huge time saver! Yes, it does initially take time and effort to create but then I know we have a plan and I don't have to waste time deciding what we are going to do, look for materials, give a great deal of though to breaking down skills. It's already done!

Also, if you are required to report hours/days schooling to a state or local authority, time spent working on IEPs count as school hours.

Domains
IEP's generally include the following academic areas or domains: Language, Reading, Math, Perceptual Skills, Writing or Pre-writing Skills, Fine and Gross Motor Skills.
You can also include domains such as life skills, social skills, self-help skills and/or character development

What kind of information should be on an homeschool IEP?
The IEP should have the following information:

1. Present skill level or present level of performance. This can be documented on a developmental inventory.

2. Long-term goals for any areas of weakness or deficiency. These should be reasonably accomplished over the next twelve months. Challenge your child-he/she will achieve goals. Decide what your priorities are with realistic expectations. Long-term goals are generalized, broad-based such as "Charlotte will increase in receptive language skills." There may be more than one long-term goal per domain or skill area. If you meet your goals for the year, set up more goals. An IEP should be fluid, always moving forward. Do not be afraid of moving a goal that has not been reached into the next year's IEP.

3. Short-term objectives to meet the long-term goals. These should be specific, concrete, well-defined objectives tailored to meet your child's individual needs and based on their long-term goals. These are the daily steps you take to educate your child. Each objective that you meet brings you closer to your long-term goal. Use these short-term goals as benchmarks to show the mastery level your child is expected to have at certain times of the year.

4. Methods and materials to meet these goals and objectives. These could be items/games made by the home educator, specific curriculum or other resource to implement your individualized program.

5. An evaluation to measure progress. You need to define how you will know your child is making progress. With some thought most skills can be broken down as a task analysis. Task analysis involves identifying a skill, determining an entry behavior, analyzing the skill and recording the sequence of task events into small observable components and sequencing the skill. Some skills can be observed and recorded in a daily journal or log. Written tests may work for the older or able child. We must be careful not to compare our children with other children. Let us measure their progress as individuals. Measure your child against their own baseline.

6. List of resources or curriculum used for the school year including resources for outside therapies such as occupational therapy, speech therapy, or physical therapy.

Schedule/Journal
I have found it helpful to display our short-term objectives in a a weekly schedule/journal that I work on every Sunday afternoon. Using a master created with my word processor (to keep things simple) it can be accomplished with little time and effort. I base our daily schedule the outcomes of my brief daily evaluations for the previous week and on my vision for the coming week. I ask myself what skills/concepts need more repetition to cement the skill/concept or look at whether or not we can move on to a new skill/concept. I've been using the same master schedule/journal format since we began formally homeschooling. Once it is set up all that needs to be done is fill in the blanks!

For each day I list:

1. Subject and resource/curriculum
2. Objective
3. Brief evaluation
4. Skill/Concept in the review cycle (unique to the child) for the subject.

We do not necessarily stick to the schedule absolutely but it is our guideline for the day.

Each IEP is unique for each child to meet your child's needs but you will probably find that children with Down Syndrome have common learning differences. No one IEP will be appropriate for all children with Down syndrome. The IEP process will help move your child toward maximum independence by keeping focus on your goals for the child's academic and functional growth.


Resources
Home Schooling Children with Special Needs by Sharon Hensly
Strategies for Struggling Learners; A Guide for the Teaching Parent
By Joe P. Sutton (ISBN: 0-96456840-3) Out of print but available at many libraries.
The IEP Planner by Jim and Debby Mills
Helps for Special Education Teachers, Curriculum and Activities to Promote Basic Skill Development by Eileen Shaum

Resources for Goals
HELP Series and Assessment Strands from VORT
BCP Instructional Activities and Record Booklet from VORT
(The VORT products are my favorite)
The Brigance
You can rent this from Homeschool Legal Defense Association
Skills Evaluation by Rebecca Avery, ISBN: 1580958842, Out of print.
Learning Objectives for Grades Kindergarten Through Eight, published by Hewitt Homeschooling

Homeschooling and Down Syndrome - Math Curricula Suggestions

Math skills are difficult for most children with Down syndrome. A great place to start in your research about number skills and Down syndrome is found in Down Syndrome Issues and Information - Number Skills Development. It is now online and free!

The following list is a compilation of resources used by parents with success for children with Down syndrome. Feel free to e-mail me with any questions or suggestions.

Math Resources

Finger Math
Also known as Chisenbop or Chisan-Bop
The Complete Book of Fingermath, Edwin M. Lieberthal, Fingermath International, ISBN: 0070376808.
Tutorial
Teacher intensive – long learning profile but successful.

TouchMath

Kumon Math
If you have a Kumon Center near you, take advantage of their expertise!

Teaching Math to People with Down Syndrome and Other Hands-On Learners
Book One and Book Two
By DeAnna Horstmeier, Ph.D.

Numicon
Recommended by The Down Syndrome Educational Trust. Can be purchased through their store in the USA.

Mastering Mathematics

Math-U-See
Developed by a father who has a son with Down syndrome

Shiller Math
Montesorri- based learning

Software Reinforcement for Learning

Math Master

Essential Skills

Video/DVD

Mathtacular
K level math concepts

Backyard Math with Zac
First grade math concepts

Dr. Finkle’s Math
DVDs and CDRs

Online Math Activities to Download

Down Syndrome Foundation of Orange County

The Sad Truth...

The sad truth about Down Syndrome and Eugenics at IDSC for Life: here







Please consider ways you can support The International Down Syndrome Coalition for Life.

"In honor of all the beautiful individuals, who happened to have Down syndrome, and their lives were taken in the womb, we dedicate our heartfelt efforts to YOU! The IDSC will continue to work tirelessly in honor of these individuals. We remember their precious lives. Our hearts are broken that they had to die for others agendas to be fulfilled."

To learn more about IDSC for Life go here

Curriculum Resources

This list came about from a need to find solutions to my daughter’s learning problems. I needed to search outside the world of homeschooling and delve into special education materials. I have included a few homeschooling companies that have useful materials for children with special needs.

Curriculum Resources

Bob Jones University Press
Adapted curriculum for children with Down syndrome at the K4 & K5 levels of learning.
Send me an email for further information.
Remedia Publications
PCI Education
Attainment Company
Bright Apple Special Education
Nasco
Steck-Vaughn
Handwriting Without Tears
Writing Program
Mastery Publications
Math, language, writing programs
Different Roads to Learning
Curriculum, flashcards, software, games mainly targeting children w/autism but good for all visual learners.

Resources for Information

Special Needs Project
Brookes Publishing
Woodbine House

Educational Materials, Manipulatives

Educational Insights

Bargain Hunting
Don't forget to check for bargains! I've found some great bargains below.

Half.com
Book Closeouts

Software Recommendations

As we all know, children with Down syndrome are primarily visual learners. Software can be a fun way to make learning meaningful and reinforce skills. This list is just a starting point and complied from recommendations by parents with children with Down syndrome.

Software Recommendations

Edmark Software - now at Riverdeep

Broderbund

The Learning Company

Laureate Learning Systems
Educational Software for children with special needs. Very pricey but some programs may help pay the costs. They are willing to send a software demo.

Dorling Kindersley
Educational software

LinguiSystems
New line of software for speech, language and communication issues.

IntelliTools
For children with special needs.

Different Roads to Learning
Targets children with autism but good for all visual learners.

BloomingKids
Variety of software for children with special needs

Earobics
Help for auditory processing

All-In-One-Language-Fun
No longer available from the distributor but can be occasionally found on ebay

Birdrock Software/DVDs
Affordable software,

Reading software


Love & Learning
Reading Software

Developing Child
A flash card sight word program for early learners

Flashcards from Geddes Productions
Picture/word flashcards - can be customized

Essential Skills
Wide variety of educational software

Edmark Reading Program
Reading (sight word) curriculum for children with special needs.

Lexia Learning
Phonemic awareness, phonics and decoding skills

Flash Series
Sight words and more!

Math Software

Math Master
Learn basic counting skills, addition and subtraction

Touch Money

Picture Math


Reviews

Here is a good place to check out reviews for software before you purchase: Software Reviews

Be sure to shop for bargains! Often times a good bargain can be found on eBay.

Reading and Down Syndrome - Part Two

Elementary School Age

As I’ve said in earlier posts, I did not have internet access when my daughter with Down syndrome (Ds) was in her infant/toddler years. I did not have access to information about early reading and Ds so we began teaching reading when Miss R was about 5. Teaching Reading to Children with Down Syndrome by Patricia Oelwein was my first purchase from the Woodbine House series Topics in Down Syndrome. This book was the first book to give me insight into how children with Ds learn and began my quest for more information specific to learning and children with Ds

As most of you know, Teaching Reading to Children with Down Syndrome, uses a combined approach - sight words moving into phonics in the form of word families. The games used in the books are interesting and fun – a perfect method for older children. This method uses errorless learning so our children not only have fun but they are successful.

Homeschooling moms tend to be purists – phonics is the only way for their kids! I had one mother say she was purposefully NOT teaching her child with Ds sight words – which made me very sad. I want to suggest that perhaps we put our pride behind us when teaching our little ones with Ds to read. Don’t get me wrong, I’m not suggesting that we don’t teach phonics to our children with Ds. I am saying that we need to consider that our children with Ds have auditory processing issues – they have difficulty with remembering and sequencing sounds vs. remembering what they can see. Children with Ds tend to have difficulty blending sounds because they often have short-term memory difficulties. Word families remove that difficulty because they learn words in chunks (visual) vs. blending letter sound by letter sound through the whole word. In other words, they struggle to read a word instead of a smooth path with each word from beginning to end. Struggling will lead to a distaste for reading and most likely lead to avoidance and behavioral issues and we don’t want to go there! Nurturing a love of learning and keeping them successful will keep them coming back for more.

Another thing I might mention related to reading are those reading readiness skills. Most are related to auditory processing issues – a definite weakness for most of our kiddos with Ds. Most of our children will learn to read without them!

Back to my learning profile and children with Ds -- research suggests a distinct profile of areas of strengths & weaknesses within literacy skills in children with Ds. This profile includes stronger word identification skill, poorer word attack skills and poorer comprehension. Obstacles for sure but not something we can’t work on throughout their education!

Again, I’m not suggesting that phonics are unimportant, as our children get older they will use those skills to help them identify words they may not know. Every strategy we teach them will be important to their functional competence as adults. Just be sure to keep moving forward where they are successful – for most children sight word reading - while teaching phonics!

An excellent sight word reading program used by many homeschooling moms (and the public education system) is the Edmark Reading Program. Edmark uses errorless learning to teach children with special needs to read – guaranteed success for most children with Ds. The software version makes a homeschooling mom's life so much easier! For more reading curricula suggestions see this.

A great overview of teaching reading from DownsEd is found here. While you there, take a look at their See and Learn materials.

Reading and Down Syndrome Part One Early Reading and Down Syndrome

Great Resources for Speech/Language & Communication

Speech, language, communication and auditory processing issues are almost universal in children with Down syndrome. As a homeschooling mom with a child with Ds, I'm very interested in learning all I can about how to help my daughter deal with these issues.

While we do use a professional speech therapist, I supplement what our therapist does with resources I've found with the companies below and thought I would share.

Speech, Language and Communication Resources

Pro-Ed, Speech, Language & Hearing Catalog

LinguiSystems

Laureate Learning Systems

Super Duper Publications

Janelle Publications

ECL Publications

Great Ideas For Teaching

Cardiology Update

R went to the cardiologist this week and got a great report. As you may know, she had a successful repair of her AVSD as an infant (3 months) which left her with complete heart block. R's pacemaker is a DDD. It paces the upper and lower chambers to give her optimal filling and pumping - a heart that beats efficiently. Most people with complete heart block have an underlying junctional rhythm or escape rhythm where the ventricle will beat at a slower rate than normal on its own. R has no underlying rhythm. When they turn her pacemaker off, her heart just sits there. She has no safety net. If her pacemaker (single ventricular lead) fails, she will die.

The good news is that her pacemaker generator (battery) has at least 18 months and as much as three years to go!

The good news is that with her next generator replacement, she will get a biventricular pacemaker. The biventricular pacemaker has the ability to pace both ventricles - no more complete dependence on one ventricular lead. She will have a safety net!

Not that I'm looking forward to her undergoing yet another procedure but I look forward to having that safety net. We've experienced atrial (upper chambers) lead failure. We know leads crack and break. We would like to avoid a devastating event.

More good news. R has grown an inch and only gained two pounds in the last eight months!

Reading and Down Syndrome - Part One

Teaching Reading Early (0-3)

Did you know reading and children with Down syndrome (Ds) is a controversial subject? Sounds pretty benign doesn't it? Families tend to fall into two groups - those who teach reading early and those who wait until a more typical time in a child's life - the elementary school years. I thought I might share what I've learned about reading and Ds and explore the different options.

Much of our time during infant and toddler years as parents of children with Ds is generally focused on health issues. Approximately 45-50 percent of our children are born with heart defects. About another 7 percent are born with gastrointestinal defects. Many present with feeding issues. Respiratory issues are prevalent due to lowered immune response. Most of our energies as parents during those early years are focused on getting our children beyond these health issues to a healthier place for our children.

During the infant/toddler years the focus of most professionals and parents is on the most obvious delays – delays in gross motor skills. Our children are normally delayed in reaching the typical milestones of the infant/toddler years. They sit at an average age of 11 months and walk on average at 26 months.

Speech Therapists during the infancy and toddler years are focused on feeding skills and/or sign language skills. How many parents are counseled to begin teaching reading?

I really want to encourage every parent who has a child with Ds to consider beginning to teach their child to read during late infancy and the toddler years. Because our children are so visual they easily learn to read words that are meaningful (words they can say or sign) to them. In the long run, teaching reading early eases their entry into the world of literacy and gives them a great head start!

The technique is easy and only takes a few minutes a day. There is no need to buy expensive programs – all you need is a bold marker and posterboard.

The following method is familiar to those who use the neurodevelopmental approach and excerpted from Teach Your Baby to Read by Glenn Doman.

Length of play (reading flashcards) is very short. At first it is played 3 times a day. All sessions must end before the child wants to stop. This way the child will enjoy the sessions and want to play the reading game and the parent is nurturing vs. destroying the child's natural desire to learn.

Materials

Stiff white cardboard (posterboard) – ready made note cards are just too small.
Words should be lettered w/felt tip maker – red is recommended..
Printing should be neat, clear, and have consistent plain lettering style, large letters (5 in by 4 in with 1/2 in between letters.
Margins should be at least 1/2 in. all around.
Printing should be lower-case letters unless the word is a proper noun.

The First Step (Visual Differentiation)

First words:
Pick 15 words of high interest or familiar, start w/mommy, daddy, names of family members, pets, favorite foods, objects in the house, favorite activities.

Sessions

Pick a place with little/no distractions.
Work only when the child is in a good mood.
Hold up the word mommy, say "This says mommy." Give the child no ore description and do not elaborate. Hold up the next card, daddy, and repeat the process. Show 3 other words. Do not ask your child to repeat the words. After the fifth word, give your child a hug & kiss with lots of praise. Repeat session 3 times/day, at least 1/2 hour apart. Sessions should last no more than 3 minutes. Always end the session before the child is ready to end it.

How hard does this sound! Doman's book will give your greater detail on how to proceed with this method. Several people have developed materials using Doman’s method to assist the parent in teaching their children to read including eReadingPro.

Another early reading tool for birth to age 3 – Love and Learning

Though it is convenient to have ready made curriculum for reading, the cost of these programs is a bit out of reach for many families - especially during economic downturns as we are experiencing now. Doman’s reading method is cheap, easy to use and successful!

Part Two - Reading and the Older Child

Patrick Henry Hughes

What an inspiration!

Missy Funny

R HATES doing her hair and protests every morning.




"The hairbrush is my enemy," she growled this morning.








When you're 14, hormonal and fragile, hair is a crisis EVERY day.


Wish my enemies made me look better.

Twouble with Twitters

Do you twitter? I'm just getting the hang of it -- I think. It really is a fun way to meet and interact with others in your niche.

I thought this was hilarious!



H/T BabyBlueOnline

Lenten Blog Carnival

is up over at Homemaking Through the Church Year!

Thanks Jessica for all your hard work!

Help with Curriculum - Homeschooling & Down Syndrome

I've added a bunch of resources to my sidebar to the right. It didn't take me long after we started this homeschooling journey with Miss R that we needed to look outside typical homeschooling curricula if we were to keep moving forward in learning. Materials for typically developing children just moved to fast and didn't break down skills to the level she needed. Of course, there is no perfect curriculum for the child with Down syndrome - all will have to be modified but here is a good start for those just beginning their journey!

A Few Special Educational Resources

Some Math Resources

Reading Resources

Bringing Awarenss...

The International Down Syndrome Coalition for Life



If you think the lives of children with Down syndrome are precious, head off to see this site! I'll be placing an order for my International Down Syndrome Coalition for Life t-shirt tonight.



Did you know that a prenatal diagnosis of Down syndrome drastically reduces the child's chances for survival? The termination rate averages around 90% for those children with a prenatal diagnosis!

What a tragedy...

The Archbishop of Canterbury on Lent

Dr. Rowen Williams



H/T Karen at Lent & Beyond