Home Education and Down Syndrome

I've spent a great deal of time over the years researching how children with Down syndrome learn.  As I read and researched, I began to collect information and slowly begin to put the pieces all together.  Learning in children with Ds is a complex interaction between strengths and weaknesses, motivation and learned helplessness, errorless learning and targeted interventions.

I have shared most of what I know in an easy to use, easy to read format in my free e-book, Homeschooling Children with Down Syndrome. 

Now, I would like to share the paper that contains the research behind the e-book.  It is found on the best site for information about Down syndrome - the Riverbend Down Syndrome Association website:

 Home Education and Children with Down Syndrome - The Primary Years

If research is your thing, you'll love the reference section!

Life Beyond Homeschooling

No, I am not retiring from our homeschooling lifestyle as of yet.  We will continue this homeschooling journey until I know in my heart that we need to seek a new direction.  Reagan is in a prime learning period.  She is picking much up at a rapid pace so we will continue on learning together.

I am encouraged (but not surprised) by studies that show that cognitive skills continue to develop with increasing age in individuals with Down syndrome and, in fact, they may be more developmentally ready to learn when they reach young adulthood.  (Down Syndrome Across the Lifespan, Chapter 7)

So, for right now, we will continue on this path.

Sometimes, my mind travels beyond homeschooling.  I have so loved this period in my life.  What will I do when I do retire?

What will I do with that big hole in my heart left by the passion of living and learning with my girls?

I must admit to some trepidation when my thoughts move to the future.  But not to fear. 

New, strange, exciting things are coming into my life.  For most of my life, I did not believe I had an artsy bone in my body. 

Now, I am driven to write.  In the past, I have written many informational kind of pieces.  I have written much about my passion for homeschooling children with down syndrome.  My free e-book Homeschooling Children with Down Syndrome has been read by over 16,000 people in the various places it is available.

So very grateful for the journey!

I have written many pieces for our regional homeschooling association creating awareness for those of us homeschooling children with special needs.  It has worked.  For the first time in a long time, we will have workshops at our local convention targeting those of us homeschooling children with significant special needs.

Now, I am driven to write stuff that is kind of off the wall for me - creative writing and something akin to poetry.

Now, I am obsessed with my camera and photos - some of which I share here.

All I know is I must create.

I know my work isn't all that good but a new phase has begun and a new path is forming!

Seeking beauty and spreading hope have become my passion.   Perhaps it always has been but now I am driven in a different way.

I want people to know that hope and healing are inevitable.  No matter what the crisis you face - God waits for you to bring Him your heart and soul, your tears and your pain - to give it all to Him.  He will create something new and beautiful of all that we endure here on earth.

I know God is at work in me.  As I transition into a walk on a different path, I find I am not lost but only finding a new direction.

And I find that exciting!

Homeschooling Children with Down Syndrome

I don't go around promoting my  e-book, Homeschooling Children with Down Syndrome, so I thought I would remind you that it is still out there and still FREE.  It amazes me that it has had almost 13, 000 reads on Scribd.

If you haven't looked at it yet, I can tell you that it is based on what researchers tell us about how children with Down syndrome learn and is packed with suggestions on how to promote learning in our children.  My book is not only for homeschooling families but for all parents with an interest in how children with Down syndrome learn.  You will see my passion for homeschooling in the book but I hope you will also see my passion for all children with Down syndrome.  We all advocate in different ways for our children and this is what my advocacy has grown into.  This book has been my mission and ministry for almost 18 years now.  I didn't know it would grow into a book but with the prompting of the Holy Spirit it has and I hope you will find it useful in growing your children into the best that they can be!

We took a little time off this summer from formal learning but we are now happily back at work.  Reagan comes with joy to the learning table and thrives in her learning environment.  I feel hugely blessed to grow with her as the years go by.  One can only be humbled and grateful when set on this road less traveled...

Research - Targeted Intervention in Children with Down Syndrome

If you follow this blog and have read my free e-book, Homeschooling Children with Down Syndrome you know I am passionate about sharing what I've learned about how children with Down syndrome learn.  Much of my research has led me to believe that targeted intervention is the key to learning success in children with Down syndrome.  New evidence in coming out in support of the research of many:

Landmark research study shows targeted intervention improves the reading and language skills of children with Down syndrome

If you are interested in following the research into how we can improve the lives of those with Down syndrome, you can find the RSS feed from Down Syndrome Education International on their website.  You can also follow them on twitter and facebook

I think soon I'll make public the summary of what I have learned about education and Down syndrome.  It is much more comprehensive than my e-book!

Which Way?

"Do not go where the path may lead, go instead where there is no path and leave a trail."

       Ralph Waldo Emerson

These words are so inspiring!  There are so many choices we make in life. Often we tend to take the path of least resistance, the paved path or follow the advice of others.  We forget to take time to really discern what might be best for ourselves and our families.


What IF we choose to spend time in prayerful discernment?

What IF we choose to discern what is best for our family despite the external pressures?

What IF we choose the unmarked path?

When a parent enters into the world of raising a child with special needs, they receive lots of advice - some desired, most not.  Parents are pressured by well-meaning folks who seem to have all the answers.  The Holy Spirit may be whispering the way through the maze and confusion but we can't hear because of all the noise and pressure.

Perhaps the right path for your family is within the system - early intervention, public schools and transition/work programs into adulthood.  A right path for many families.  God is a work within the system too.

Perhaps the right path for your family is working with your child outside the system and targeted intervention.  A path chartered by listening to what God wills for your family and a path designed by God.

Sound scary?

Perhaps, but that fear will fade to be replaced with the confidence engineered by the Holy Spirit.   You will come to understand you really are your child's best teacher. You will see your child learn and grow and his/her own pace. 

God has His own timing and so do our children with special needs.

When you walk in His will, you know peace...

...and your trail marked with blessings.

 *******************************

Speaking of leaving a trail,  if you are interested in homeschooling your child with Down syndrome please look at my free e-book Homeschooling Children with Down Syndrome.  In this book I share much about how children with Down syndrome learn, methods, curriculum tips and more!

Considering Homeschooling Your Child with Special Needs?

Parents begin considering homeschooling their child with special needs via a variety of paths.  

Many have homeschooled their children from the beginning.  They seem to be born with a homeschooling heart.

Some are called to it because of their child with special needs.  They understand that the system cannot effectively deal with their child’s special needs to ensure the child learns and grows into the best he/she can be.

Some begin because of difficulties with the school system.  They may be disappointed in their child’s progress.   Some even remove their children emergently because the situation is intolerable for their child.

I’ve listened to them all as they open their hearts and share their stories.  There is one common thread which runs through every parent’s mind as they consider the options.

Anxiety

The discernment period is a time filled with anxiety.  They worry if they can take on such an immense responsibility and do it well.  Even the veteran homeschooling mom experiences anxiety and doubt!

And it is normal.

We all want what is best for our children.  We, more than any system, care about our child’s outcome and will work harder to overcome challenges our children face.  

We all want what is best for our family.  We must consider how the decision to homeschool our child with special needs will affect our other children and spouse. Most homeschooling families naturally incorporate the child with special needs but some don't.  They fear that they cannot meet their child's special educational and/or therapeutic needs.  They worry that homeschooling their child with special needs may affect the education of their typical children.  There may be concerns that the perceived extra burden they are considering may cause increased marital stress. 

The discernment period is a time of prayer. 

We pray that the Holy Spirit will guide us as we do the research needed to make an informed decision.  We need to know as much as possible about our child’s diagnosis and how it affects growth and development – and overall learning.

We pray for others to walk alongside us - listen and share their knowledge and wisdom.  Fortunately, as the number of those  homeschooling their children  has grown, so has the number of those homeschooling children with special needs.  The support is there whether it be local or via the internet.  You will find others to work alongside you during the discernment period.

You might meet some of those people who I know as encouragers and friends.  Most I will never meet in real life but I consider them life-long friends.  We have walked with each other, celebrated with each other and cried together.

What you will learn

In the discernment period, you will come to know that you will be your child’s best teacher.  You know him/her better than anyone else. You have been his/her teacher from birth.  Homeschooling is a natural extension of parenting.

You will learn that homeschooling will not cure your child.  Homeschooling can provide a more optimal learning environment – one in which the child is safe, is encouraged and loved - learns and grows to be the best he or she can be.  In cases of significant challenges, this can be of utmost importance.

You will learn that homeschooling is not the easiest option though some might consider it to be so.  No more IEPs, BIPs, no more struggles to fight for services…

It is a lifestyle that requires perseverance and fortitude. It will challenge and grow you.  It is not for the weak of heart.  There will be tough days.  There may be tough seasons – but isn’t it so as we educate our typically developing children?

As you begin

Your anxiety dissipates.

You will find this path brings great rewards and untold amounts of joy.  There is nothing more rewarding than watching your child  overcome challenges as they master a new task or incorporate a difficult concept.

You learn what it means to walk by faith, not by sight, trusting the Lord will provide!

As I look at my sunset years as a homeschooling mom, I know the path we chose was right for us, good for our children, and the best choice for Reagan - our daughter with Down syndrome.  I have been blessed beyond my dreams by our homeschooling adventure.  I can see how God called me to this, the road less traveled, and then answered prayers as He guided us to fulfill His will for our family.

If He leads us to the road less traveled as a homeschooling family, He will guide us through it and we glorify Him in the process.

I am in awe of what He has accomplished in our family – especially in me.

The Road Less Traveled...

Even as homeschooling becomes more mainstream, people are shocked when I tell them I homeschool Reagan, my almost 17 y.o. with Down syndrome.  Most really have a hard time understanding how a mom can educate their child with significant special needs.  They have a hard time understanding why I would even contemplate taking on the task!

I have always tried to make decisions for my children based on their best interests.  Homeschooling was/is the best choice for them. Period.

I know longer defend our choice nor bother to explain it unless someone has a sincere interest.

The less traveled homeschooling road has had some challenges but as we look to the end of the road I only see great joy and beauty in what we have accomplished.  The interesting thing is others see it too...


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Our New Educational "Toy" - iPads and Down Syndrome

For some time I've heard about the advantages the iPad has to offer but the cost was prohibitive. I've wasted invested so much money on educational tools/materials that disappointed me that I did a great deal of research before committing to buy.

And I was still unsure.

Do we really need more technology in our house?

We are surrounded by technology which I find all too tempting. In the time it takes me to write this post, I could have burned 300 calories on the treadmill...

Would this tool be of value to an older child with special needs?

Reagan has great verbal skills. She doesn't need a augmentative communication device. Those with younger children with Down syndrome find the relatively inexpensive AAC app, Proloquo2Go, quite valuable.

Would there be enough apps to make the device worth the cost in our homeschool?

Reagan has the basics down and much of what I had read about apps which are useful in education and Down syndrome were applicable to younger individuals.

But then I read Leah's review of iPad apps on her blog, Garden of Eagan, and I felt a bit more positive.

Then our cell phone provider dropped the price of the original iPad dramatically.

That was all I needed!

Reagan loves her iPad! I've found many apps that are fun learning tools. Many incorporate errorless learning in a way that Reagan finds exciting. I've also found apps which build on her communication skills and grammar.

My favorite apps so far are from the Mobile Education Store. These communication apps are inexpensive and interesting for Reagan.

The math apps available seem endless. There seems to be something for every goal I set!

For a comprehensive list of apps for children with special needs, try these sites:

iPhone and iPad Apps for (Special) Education

Complete Guide to Educational and Special Needs Apps

Looking for an iPad for your child? Fill out an application here. Apps for Children with Special Needs exists to help families who cannot afford an iPad.

You might find other resources for funding at Special Needs Apps for Kids

The rest of the family also makes use of Reagan's iPad. I never thought I would enjoy downloading books and reading them on an electronic device. I so love the feel of reading a real book - but having 26 versions of the Bible (free app) in one place can be useful!

Now, I can take my vacation reading in a suitcase minus the weight of the books.

I love this device too! It has proved to be worth its cost and its value will build over time with new apps developed constantly. I'm sure this investment will not be wasted!

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Do You Homeschool a Child with Down Syndrome?

Do you blog about homeschooling your child with Down syndrome? I would like to know who you are!

Here are a few that I know of:

Barbara at Barbara Frank Online

Lori at Special Connection Homeschool

Beth at Hannah's Shenanigans

Kimberlee at Pondered in My Heart

I know there are more of you. Let me know you are out there! I would love to put you all on my sidebar.

The Little Things

Last night I was thinking about a jewel of a book we used with Reagan when she was younger and beginning formal pencil and paper activities. As you may recall, children with Down syndrome (Ds) learn little incidentally. They do not learn as much through observation and indirect exposure as typically developing children.

Skills need to be directly taught to children with Ds. When our children get a new toy, we often have to teach them how to play with said toy. Step by step, we teach them how to enjoy it or learn from it.

When teaching concepts through the well-known method of match-select-name in teaching reading we have to teach our children what match means. When following directions on a work sheet, we specifically need to teach them directions like draw a line to ______ or circle the ______ or cross out the _____.

These are skills we must teach specifically to our children with Ds. They often won’t immediately adopt these skills. We must give them practice at skills that are often left unspoken and not specifically taught. We must be as intentional about the little things as we are the more important skills. For it is in building on the little skills, we find the big picture.

Developing these skills takes only a few minutes a day. You could certainly make your own worksheets to teach the skills. We had a very helpful guide:




Follow Me! Listen and Do Activities by Grace W. Frank, was very helpful in teaching skills needed to follow simple directions on paper. Ms. Frank defines and teaches basic direction terms (line on, line next to, line through etc.), position/location words (top, bottom, beside etc), association (matching, same/different, categories etc.), exclusion (not), sequence (before, after, first, last etc.), word meanings (equal, more, most, fewest etc.) and listening (beginning sounds, rhyming etc.)

Follow Me! Listen and Do Activities is for K-3rd grade. We used it for a very long time. The directions are very simple as are the worksheets. As we moved through the book the directions became more complex. It is spiral bound so that making copies of the worksheets for repeated practice is quite easy. Reagan thought the activities were interesting and fun. They worked and improved her auditory processing skills as she followed simple to more complex directions and gained many new skills often picked up quite easily by typically developing children.

I almost hate to mention this book because it is out of print but can be found for a fairly reasonable price on ebay - reasonable compared to $160.00 and up from Amazon booksellers. Sometimes I wonder how much my homeschooling library must be worth. I’ve been doing this so long that many of my books are out of print!

You certainly don’t need a guide to teach your children these skills and definitely not one which has that kind of price tag. We do need to think about and intentionally teach the little things to ensure our children can learn, step by step - building on what they know, the big things!

Resources - Homeschooling and Down Syndrome

When we made the decision to homeschool, it took me awhile to discover that children with Down syndrome (Ds) learn differently from typically developing children and differently from others with different intellectual disabilities. While the knowledge I gained from general resources about learning and individuals with special needs was valuable to a certain degree, it wasn't until I discovered just how important specificity is as it relates to the unique learning needs of children with Ds are in creating an optimal learning environment.

Children with Ds have unique learning challenges which researchers have called a typical learning profile. So, what works for homeschooling families with typically developing children and those dealing with other types of special needs generally will not work for our children without significant adaptations to the material.

To create a more optimal learning environment, we need an understanding of the specific learning profile, which targets the child's strengths and weaknesses, and develop targeted interventions for learning success. In our children with Ds it means teaching to their strengths and understanding how their weaknesses impact learning.

Here are some of the many resources available:

Websites

These two websites have been the most valuable to me over the years. They provide up-to-date research into the way our children with Ds learn. It takes a very long time for research to appear in books intended for parents, teachers and service providers.

The Riverbend Down Syndrome Association
A wealth of information about how children with Ds learn and a homeschooling folder.

The Down Syndrome Educational Trust
Publishes research about Down syndrome from around the world.

Books and other Materials

Down Syndrome Issues and Information

Effective Teaching Strategies for Successful Inclusion: A Focus on Down Syndrome, published by the PREP Program

The Source for Down Syndrome Written by Catherine I. Chamberlain & Robin M. Strode

From Woodbine House:

Early Communications Skills for Children with Down Syndrome by Libby Kumin, Ph.D.

Classroom Language Skills for Children with Down Syndrome by Libby Kumin, Ph.D.

Helping Children with Down Syndrome Comminicate Better by Libby Kumin, Ph.D., CCC-SLP (ages 6-14)

Gross Motor Skills in Children with Down Syndrome by Patricia C. Winders, P.T

Fine Motor Skills for Children with Down Syndrome by Maryanne Bruni, BScOT

Teaching Math to People with Down Syndrome and Other Hands-On Learners by DeAnna Horstmeier, Ph.D. Book 1 and Book 2

Teaching Reading to Children with Down Syndrome by Patrica Oelwein

Mental Wellness in Adults with Down Syndrome by Dennis McGuire, Ph.D. & Brian Chicoine, M.D. (not just about adults)

My ebook Homeschooling Children with Down Syndrome compiles much of the information and research available - one stop shopping and it's free!

The books above are a great entry into the world of homeschooling and Down syndrome. These books speak to the syndrome and characteristics/traits commonly found in individuals with Ds and provide much valuable information presented in an understandable fashion. They provide a wealth of information and take the mystery out of therapies.

Uninspired - AKA Homeschool Burnout

A repost from 2010 because it is that time of year...

A place I know very well. Late January and February bring me to this place where I feel totally uninspired – also known as burnout. I know I’m not alone. Many homeschooling moms experience a sense of burnout this time of year.

What is homeschool burnout?

Perhaps life is not quite so enjoyable. In fact, you might find all your emotions rather muted. Irritability is common. Also feeling exhausted, overwhelmed, discouraged or possibly even depressed. Symptoms will vary with each individual. The key is to be aware of the likelihood of its occurrence before it impacts the family and your homeschool.

What contributes to this sense of burnout?

For us northerners who face shorter, cloudy days, bitter cold, ice and snow, the weather plays a big part in our feelings of isolation from others. It is just a reality that social gatherings and field trips decrease because of the weather.

We’ve got half of the school year under our belts. Most of the homeschooling moms I know see this time as a time that we question what we have chosen to do with our children. We question our goals and the effectiveness our role as homeschooling mothers. We question the effectiveness of our choices. We ask ourselves questions and ruminate beyond the necessary and useful point. Are we doing enough? Are we meeting our goals? Do we need to make changes?

Most homeschooling mothers have high expectations for themselves. They often find there is never enough time in the day for all they want to accomplish – with school, parenting, discipline, laundry, cooking, cleaning etc. Homeschooling is a very task-oriented lifestyle lending itself to burnout.

Homeschooling Children with Special Needs

Taking the responsibility for homeschooling a child with special needs may intensify our feelings of burnout. After all, this is a huge responsibility – our efforts will impact our child's future functional competence. We don’t have a system to rely on or blame.

We often find ourselves comparing out children with others with a similar diagnosis in our own community whether it be in our homeschooling community or perhaps even a child in the school system. Are they doing better? Did I make the right choice? Would my child be better off in the system with all its supports?

Burnout - What can we do?

Burnout is a nasty place to be. The remedies:

1. Anticipate burnout.

Burnout is common in homeschooling moms. Anticipate it and you’ve almost won the battle!

2. Take a good look at your priorities.

Be sure that you are in fact keeping them in the right order.
-Am I spending enough time with God in prayer and with His Word?
-Am I giving enough time to my husband? In giving you will receive.
-Are my children’s basic and educational needs being met?

3. After reassessing priorities, choose carefully where you get involved outside the home.

It is common for others to think just because you homeschool you are available to meet their needs and the needs of the community during school hours. Practice saying no or I'm sorry I just can't do it -- without explanations.

4. Quit second guessing God.

Most of us who are called to homeschool are led there by a loving Father. If He leads us here, He will provide all that we need to accomplish His goals for us and our family.

5. Remember why you homeschool.

Keep your goals for your children close and in the proper perspective. Are you homeschooling to instill proper morals and values? Are you homeschooling because you believe you and your family are contributing to the need for more strong soldiers for Christ? Do you think you can provide a better education for your children than the system can provide? Do you have a child with special needs who thrives in your homeschool environment? Worthy goals - keep your eye on the prize! I've graduated one well-rounded young lady who, with her natural gifts, will contribute greatly where ever she is planted. It was worth every second!

6. Take good care of you.

I cannot stress enough how important it is to take care of yourself. Eat right, exercise and get proper sleep. Your world will be a better place.

7. Don’t compare your children

Don't compare them with each other, family members or those in the community - especially if they have special needs. This is probably one of THE most destructive thing any parent can do. Compare them only to themselves. Are they working towards goals that are reasonable and obtainable? Are they making progress? Sometimes it is essential to look at the baby steps they might be taking toward a long sought after goal to find success. Find it and celebrate it!

8. Work at changing your thought patterns.

-If you are often finding yourself discouraged and down, try to focus on your blessings. Are you children healthy, clean, fed – physically, emotionally spiritually ready for learning? If that is the case, then learning will occur. They may not learn all that is on your agenda for the day but they will be open to the experiences and opportunities provided.
-Wake up with a thankful heart. Thank God for the opportunities that He will place before you as the day unfolds.
-Pray for your children and ask God to bless your day together.
-Thank God for them and the joy they bring – even when they are bickering.
-Verbalize all you find in the day to be thankful for. Soon you will find your children doing the same and the joy is multiplied!

9. Learn to live with dust bunnies.

One of the hardest things for me as a homeschooling mom was letting go of my need for a clean, tidy house all the time. I am a recovering neat freak. I am a recovering neat freak living with people who don’t see what the fuss is about. They are right of course.

10. Schedule flexibility.

That's right - if you are the obsessive-compulsive type like me who has a daily schedule, put a little flexibility in your schedule. Leave time for spontaneity and discover the joys!

11. Delight in the little things.

A cup of hot tea or hot chocolate with instructions that mama is taking a few minutes of time out and take it. My homeschooling friend, Amy, puts on her red tennis shoes every morning because they bring her a sense of delight – every day.

12. Make time for the things you enjoy and that refresh you.

Whether it be a good book or a hobby - do it.

13. Make a list of things to look forward to

-Schedule a date night with hubby – even if it has to be in your own home.
-How about a game night with the kids?
-An occasional mom’s night out with friends. Real life friends are important.
-A special dinner once a week with all your favorite foods.

14. Make a list of projects to take on.

I usually have a winter project because we spend more time at home. Even if it is just a closet or a few drawers, it is something outside the daily routine. It makes me feel productive in a different way. Involve the kids and it will be more fun! I don’t know if the kids will find my winter project fun – stripping the kitchen wall paper – but you never know.

15. Explore curriculum choices.

Most of us have homeschooling conventions on the horizon. Take the time to get excited about next year, investigate new options/curriculum choices and make plans on where you want to spend your time in the vendor hall.

16. Seek out the homeschooling community on the internet for support.

There are so many wonderful places to find support on the internet - way to many to list but you might try The Swap, The Homeschool Lounge, Heart of the Matter Online, The Homeschool Village, or the The Christian Homeschool Hub when you can't meet with your local homeschoolers for support and fellowship. I doubt you can find a homeschooler that has not experienced burnout. Let others share their ideas to get through this season.


Alas, I’m feeling inspired once again. I'm off to work through the list!

Homeschooling Children with Special Needs - Local Support Groups

Most of us who make the decision to homeschool our children with special needs belong to online support groups. We find valuable support and information from those who have walked a similar path before us. We find out what has worked (or not worked) for others related to our child’s specific diagnosis. Quite often, others will cheer our successes and offer sincere empathy as we struggle.

Often times, we find ourselves isolated in garnering support as we struggle to learn how to best approach meeting the needs of our child with special needs.. Just mom cozying up to the pc can be very lonely. Smiley faces and cyberhugs can only go so far

Creating or joining a local support group with others who homeschool their child/children with special needs can fulfill many needs – in our own lives and the lives of those on a similar journey:

Participating in such a group can improve our homeschooling environment. A teaching parent who is supported in real life is a better parent and teacher.

Occasional time away from our loved ones in a relaxing environment is good for our mental health. Twenty-four hours a day of parenting, caring for out children and spouse, homeschooling, dealing with special needs, cleaning and cooking can be draining without an occasional refreshment of socializing with other parents who understand.

The insights of others further along the path are invaluable.

Sharing the burdens and the joys lightens our load.

Prayer (and other) support immediately available.

Sharing resources in a group setting is often helpful and can save money.

New friends! Some parents with children with special needs find their friends have fallen away as they deal with those special needs. Friendships are essential and perhaps easier to maintain with those who want to understand or do understand our journey.

So, what does it take to start a support group for those homeschooling children with special needs?

A call to ministry for a few moms. I think it might be difficult to shoulder the responsibilities involved in creating such a group by any one individual. At the very least, 2-3 moms (and/or dads) should be involved.

Prayer support for those called to leadership. We are all busy educating and nurturing our families. Those who are called to leadership do more than just showing up. Ask others to pray for you.

Advertise in your local homeschooling associations newsletter and e-mail groups. There are others out there traveling a similar path. You don’t have to do this alone.

Have a location – preferably not in a member’s home. A church hall or local eatery should work. We don’t want any of the parents to stress about a meeting in their home that is supposed to be a stress reliever.

Decide how frequently you would like to meet. Is monthly too often? Is every other month not enough? I think you will find people rotating in and out depending on their family schedule and babysitting availability.

Decide on a purpose for the group. Is it a casual meeting with no agenda and focused on fellowship? Is there a general topic (ie. sensory issues) for each meeting? Could one member share their journey and then take questions? Don’t forget to ask fellow parents what they would like to learn about and what their needs are – brainstorm! Even when the group deals with a wide variety of special needs, there is much common ground for fruitful discussion and mutual support.

Jump on in and make it happen!

I am not an expert on forming support groups. No references to turn to – only a tiny bit of experience. Our local homeschooling group for families with special needs is still in its infancy – about a year and a half old. We are learning as we go, providing as we can.

Care to share what has worked or not worked for you local homeschooling children with special needs support group? I would love to hear from you!

My Sabbatical from Blogging...

Is it over? How do you return from 9 months without making a post with significant content? I guess you just jump right in...

I think putting together my ebook, Homeschooling Children with Down Syndrome met a personal goal of mine - to share what I have learned on this journey. It has been my ministry for over a decade to share and mentor others on a similar path. I know there is much more to come on this journey. More that isn't shared freely in the blogosphere. There are very few bloggers with teens or adults with Down syndrome sharing their journeys.

Over the last 9 months we have traveled extensively and met many wonderful people. Reagan has a way of attracting the most incredible people into our lives. She exudes an unconditional love for others - she blesses and we are all blessed. She has matured so much in the last year. She is quite independent and even a little sassy. I have to say her adolescence has been fairly easy but then both of my girls have been easy as far as our relationships go. The closeness we enjoy as a homeschooling family and the mutual respect for each other made what are usually difficult times in a family just an age and a stage.

In the fall, my oldest left for college. Kiera is attending a small Christian school near Chicago as a biology major. She has adjusted quite well to life at college - even made the Dean's list! I am so proud of this young lady! Homeschooled through high school and a success in the competitive world of college!

Reagan misses her sister dearly. As hard as it is for me to let go, it has been much more difficult for Reagan. The tears still flow freely and frequently - she knows things will never be the same...

Our local homeschooling children with special needs support group. Special Needs, Unique Challenges, has become more active. We have been trying to meet monthly for a mom's night out this school year. The weather has interfered greatly this winter though. We have had the snowiest winter I can recall!

We are serving two small rural churches. Our parish families have blessed us immensely. Until now, I had not known a parish family so united in their love for the Lord that it is almost palpable. The serve the Lord and each other...and love my family. Here, we do not just go to church - we belong. If you have a child with special needs, you know how rare this is!

We have a new Bishop with exciting plans for the future. While our buildings and property are being threatened with lawsuits from The Episcopal Church, our Bishop has a vision for our future. A future where buildings and property are only things. The mission of the church will continue on without those things if necessary.

I have been named Diocesan Coordinator for those with special needs. A coordinator grows ministry within our Diocese. I am busy at work trying to define this new ministry and set goals for our team. It is a very exciting time for me. At times, anxiety creeps in. Am I the right person for this job? Do I have the skills to grow this ministry? Do I have the time and energy? But then I remember - God doesn't call the equipped, He equips those who are called!

Reagan will have surgery soon. She will have a new pacemaker put in. This pacemaker will pace both her ventricles - an added safety measure since she has no underlying heart rhythm. Complete heart block was a complication from her original open heart surgery, repair of AVSD, as an infant.

A brief update on a snowy day. My life is much fuller than I can describe in this space. Blizzard warning here - expecting 20 inches of snow with white-out conditions. I don't expect to be plowed out until Friday. Really. And I don't mind. I have a well-stocked pantry and freezer. The generator has had a recent tune-up. I have a pile of books waiting for me along with a nice warm blanket.

So, let the snow fall and the wind blow. I'm going to enjoy this day!

DownsEd Conference in Atlanta

The Down Syndrome Association of Atlanta is hosting a DownsEd conference next month - September 9 - 11. It is not to late to register!

Here is the brochure and registration info.

DownsEd has been instrumental in bringing up-to-date research into Down syndrome to professionals and families in a easily understood format. These events are so informative and inspirational - especially for homeschooling families. Do take advantage of this opportunity if you can!

My New E-book - Homeschooling Children with Down Syndrome

A compilation of years of research on how children with Down syndrome learn and part of a much larger project.

Just click on the button to view for free. I would love to hear feedback from you!

Homeschooling and Down Syndrome - The Reluctant (???) Learner

Part Two - The Child

In trying to discern what difficulties there might be in the learning environment which might result in reluctance or resistance, I always ask myself or might ask you the following questions:

Health

Are they feeling well? A child who is not feeling well is not receptive to learning. A child who does not get sufficient sleep will not be receptive to learning.

Are their eyes and ears healthy? Vision and hearing problems are common with Down syndrome and a great impediment to learning. Attention to these potential problems is needed with annual (minimum) physical exams.

Motivation

Is motivation a factor? Children with Down syndrome are known to have motivational issues when compared to typically developing children of the same age. From the time that our children with Down syndrome are born, they work hard to learn the skills they need – harder and longer than typically developing children. They are familiar with failure and need to be supported in learning with errorless teaching/learning to feel successful.

Is the child bored? Young learners with Down syndrome thrive on material given at a fast pace in an engaging manner. Keep it FUN!

Is the work provided close to the child’s developmental level? Working closely to his/her developmental level will make her feel successful and involved...and motivate her to come back for more!

Attention

Are attention deficits a contributing factor? Attention deficits are common in young learners with Ds. Incrementally increasing time and attention to task is worth the time and effort inside and outside of formal schooling is well worth the time and effort.

Is it hard for the child to sit still for learning? Alternate seat work with fine and gross motor activities. Keep any seat work meaningful. Lessons should be fairly short and fast paced. Keep the fun factor high!

Combining physical movement with learning can be quite helpful and enjoyable.
A friend of mine did “ball school” when her son with Down syndrome was young. He practiced sight word reading while bouncing a ball. This markedly increased his ability to learn new words.

Learning Profile

Children with Down syndrome have a known profile of strengths and weaknesses to consider in the homeschooling environment.

Am I teaching to my child’s learning strengths? Children with Down syndrome are primarily visual learners. Therefore, material presented should be accompanied by a visual aid.

What about processing deficits? Children with Down syndrome frequently have auditory processing difficulties. This makes learning by listening difficult. Again, visual cues are of the utmost importance.

Am I using language the child understands? As parents, we have a greater understanding of the words our children understand. We know they understand far more than they can express. New vocabulary should be specifically taught and clearly defined.

The Learning Environment

Are their any distractions? Is the house free from noises from the television, radio or adults or other children talking? Children with Down syndrome are easily distracted by noise and even visual stimuli.

The Learning Table

Learning does not necessarily happen at a table. In fact, much does not but I will refer to lesson time as work done at the table.

Is the work meaningful? Am I building on what the child knows – scaffolding new skills on top of what has been consolidated?

Is what they are working on to easy or to hard? Early learners with Down syndrome should be working close to where they are functioning on the developmental scale you are using – again, building on skills they already have.

Am I breaking down the task/concept in to smaller bits so that the child can understand the task/concept? With many concepts/skills, we have had to break them down into smaller steps and spend extra time on them. Breaking down skills/concepts gives meaning to the task as each step is mastered.

Am I providing enough repetition for the mastery of skills and concepts? Frequent input and plenty of review are the keys to consolidation of learning.

Am I giving them enough practice at new skills and concepts? Often a wide variety of materials, rotated throughout the week to reinforce new skills/concepts are necessary to consolidate learning.

Am I taking into consideration the child’s interests? In bringing the child’s interests into the learning environment, the most mundane of tasks takes on interest.
Is the curriculum a good fit? Concept oriented materials with a hands-on, visual approach works best for the early learner with Down syndrome.

Challenging Behaviors

Are behaviors getting in the way of learning? Often times, challenging or inappropriate behaviors are clues that you need to switch gears. Change the subject. Change the venue. Go for a walk but keep the child engaged!

Normal childhood naughtiness or the avoidance behaviors (cute but socially inappropriate behaviors) common to children with Down syndrome can disrupt the learning environment. Think about positive behavioural approaches vs. the more common parenting approaches which include punishments that are ineffective.

Sometimes behavior challenges are of a more serious nature. If so, those behaviors can be the greatest obstacle to learning a child with Down syndrome faces. If necessary, seek professional support.

Previous Learning Experiences

What previous learning experiences has the child had? Has the child been removed from the system recently? Was their previous learning environment traumatic? You wouldn’t believe the stories I’ve heard from families who have removed their child from the public school system.

The general rule of thumb for homeschooling families is that the child will need a month for every year in the system or adjust (some say recover) to homeschooling. I think it is safe to say a child with cognitive impairments will take longer.

In Closing

What seems to be reluctance or resistance on the part of the learner with Down syndrome can be the result of many complex issues – none of which are insurmountable. Persistence on you part will pay huge dividends!

Part One

Homeschooling and Down Syndrome - The Reluctant (??) Learner

Part One - The Homeschooling Parent

Children with Down syndrome (Ds) aren’t really reluctant learners but it may seem that way - especially in the early years of their lives. What may appear to be reluctance or resistance is just the way they try to deal with the complexities of life with Ds and the obstacles they face in learning.

Over the years I've had quite a few questions on this issue. I would like to share a few tricks of the trade. Little things that have helped me that might help you. Some are quite obvious but some thought given to the obvious may garner some new insights as to the importance of what is obvious and how it plays into the homeschooling environment.

Children First
Children with Ds are children first. Children are fun and like to have fun. They are silly and playful so why not play along! My experience with a child with Ds is that there is more fun with the extra chromosome! The learning environment should be filled with interesting and engaging materials that help make learning FUN!

The Parent
As homeschooling parents, we may be overwhelmed by the obstacles to learning our children with Ds face. I’m here to tell you its all about baby steps. – your own and the child’s. Homeschooling a child with Ds is not that hard – it just takes time and effort to learn how the child learns, what obstacles they face and then implement what you have learned into the child’s learning environment. You will learn together to make your home the best learning environment for your child!

Educate Yourself
Be educated and informed. My archives hold a great deal of information on homeschooling and Down syndrome. The sidebar to the right has many useful links. The Riverbend Down Syndrome Support website is full of research related to how children with Down syndrome learn and also quite a bit of information on homeschooling children with Ds.

Commitment
We all go through a research phase when considering homeschooling our children with Ds. It is usually a time filled with anxiety – very normal! We wonder if we are capable of this huge responsibility. You are! Once the decision is made to choose the homeschooling option, commit yourself fully to it. Our children will sense if we are just experimenting and not fully committed.

Our Approach
Are we approaching homeschooling our child based on their needs? When I was in the research phase, I feel in love with a literature based method of homeschooling. Soon I found out that approach would not be best for Reagan. She does not learn well from listening due to auditory processing issues.

So I switched my thinking and approach to best suit her learning needs. As you know, children with Ds are visual learners. All information given verbally should be paired with a visual – gesture, sign, flashcards, picture cues, the written word etc.

Our Attitude
Our attitude is so important to the learning environment. Our attitudes are contagious! If we approach our day and school hours with a positive outlook and enthusiasm our children will too!

I am by nature a quiet, reserved person. Though I do tend to look at life with a positive outlook, Reagan demands more of me. She has turned me into a rather loud and boisterous cheerleader! We feed off of each other in our excitement and love for learning.

The Parent – Child Relationship
A warm, loving relationship between the parent and child is essential in the homeschooling environment. Nurture this and many of your battles are won! Children with Ds tend to be very sensitive to the feelings of others. Reagan is no different. She wants to please me

Latent Gifts?
Homeschooling moms might discover a few latent gifts! Homeschooling may develop some underdeveloped gifts waiting to blossom!

Patience
Doesn't every parent pray for more patience? Homeschooling a child with Ds requires patience. Learning often takes longer and requires many more learning trials than with typically developing children. Just remember that as you tire of teaching a skill/concept they are just beginning to get it. The joy that follows when a new skill is accomplished or a new concept is consolidated is glorious!

Creativity
Don’t let your perceived lack of creativity stop you from considering homeschooling! I don’t consider myself the creative type but am surprised over and over again by what is delivered to me (from above) that which is needed to get a concept across! New avenues of delivering more abstract material appear with perfect timing.

Part Two

Homeschooling and Down Syndrome - Routines

Remember my post on the groove? A groove is simply defined as a set pattern or routine in one’s actions or thoughts. Routine and structure are important to young learners with Down syndrome. The groove allows them greater freedom and independence within the known routines.

Individuals with Down syndrome thrive with a set routine.

Routine and structure are also important to the homeschooling household. Without a routine in our home, little would get done.

Routines are important to typically developing children too!

Routines are important for all of us!

A few suggestions for families homeschooling a child with Down syndrome regarding routines and motivating the child to work within the routine:

Develop a routine and stick to it.
It is important that your child knows what to expect every day. Soon you’ll find that your child will remind you what is left to be done.

Devote yourself to the routine.
Most of the distractions to our day came from the telephone. Train yourself to avoid those distractions until what you need to accomplish as far as school is complete.

Make a visual for the child to refer to as the day progresses.
Initially, I would just use a daily schedule. As the child understand the rhythm of the day, move on to weekly and monthly schedules.

Prepare the child well ahead of time of any changes.
Again, the groove. Changes in routine may cause anxiety in the child with Down syndrome. There will much less anxiety if any changes in the daily routine are talked about and placed in the weekly schedule.

School is not a choice.
Reagan has never known that she has a choice as far as doing her school work. It is something that happens every day. She does have choices about the less important things in her life but reading, writing and arithmetic are to be done daily.

Plan ahead.
Every Sunday I take the time to plan out our week. I plan and I gather materials so that when it comes time to start our day, I’m not running all over trying to find things while my child loses interest.

Speaking of planning
Plan all those necessary errands and physical/dental/therapy appointments after school hours.

Make fun a priority
The daily routine should consist of things the child enjoys inside the work day. Choose the right high interest materials to make learning fun.

Learning should be meaningful.
To keep the child engaged, learning should target the child's interests and build on what they know. New skills and concepts should be broken down into smaller steps to build on. As the skills/concepts are practiced and consolidated, add another step.

Consider rewards
I know you’re thinking food but I am not! Sincere, appropriate praise will be genuinely appreciated and will go far in keeping with the flow of the day and the child's willingness to participate.

Use that wonderful parent – child relationship as a reward for you both. How about a little cuddle time on the couch with mom and a good book? Our visual learners all love a little computer time or a DVD for a good school day and a job well done.

Speaking of rewards.
Sprinkle rewards throughout the day as necessary. More frequent rewards may increase motivation to stay with the scheduled day.

The Homeschooling Community and Supporting Homeschoolers with Children with Special Needs

Matthew 25: 31-46

In every homeschooling community you will find homeschoolers educating children with special needs. You may not see a lot of them but they do exist.

Why don’t you see them?

They may not be comfortable bringing their child with special needs to events and gatherings due to social, behavioral and/or physical issues.

They may be using all their available energy to meet the needs of their family and their child with special needs.

They may not feel their children are accepted as fully participating members of the community.

Does the homeschooling community have a responsibility to nurture and support those homeschooling children with special needs?

The homeschooling community is primarily made up of Christian families. Jesus welcomed – even healed - many people with special needs. He gave them His time and attention. Why should the Christian homeschooling community be any different?

Many of these families are already a part of the homeschooling community. Their children with special needs should be welcomed into the community as every other child is welcomed.

Individuals with special needs are an often marginalized segment of society. They are often excluded because they look and/or act differently. Much of society doesn’t value those with significant needs and/or cognitive challenges. In fact, many with known genetic syndromes are aborted in utero. Babies created in Him image disposed of as useless tissue!

Let the homeschooling community be different. Embrace those with special needs and their families as Jesus would!

What you, as an individual, can do:

In every homeschooling community you will find many who would love to support those homeschooling children with special needs but aren’t sure what they can do.

1. Acknowledge we are dealing with more than the typical homeschooling family.

We acknowledge that every child is special but we do deal with challenges beyond the typical family which impact our lives, our marriages, our typically developing children and our relationships in the community. Often times, we work endlessly to find ways to meet the needs of our child with special needs and spend many more hours per day meeting that child’s needs to helping him/her reach beyond their challenges.

2. Keep a mental list of those you meet in the homeschooling community with children with special needs.

When you meet someone who homeschools a child with special needs, ask them if they know so and so who also homeschools a child with special needs. Those relationships can provide invaluable support.

3. Do not be afraid to approach the family.

Many people just don’t know what to say or do. Let us lead the way for you. As you get to know the family, you will probably be surprised by the blessings they know as a parent of a child with special needs.

You will discover that our lives are more than our child's diagnosis. We, as a family, are just like your family. Beyond the challenges we face, are the same dreams and hopes for our children...and we share many of the same problems.

4. Don't be afraid to inquire about the child’s special needs.

Most families are quite willing to share – they live with those special needs day in and day out.

5. Do not be afraid of the child with special needs.

They may look different or act differently but they are always children first. The nonverbal child will appreciate a smile, a light touch and friendly conversation – just like every other child. Some children will have ‘invisible’ special needs and are also in need of your support and understanding.

6. Educate your children about our special blessings and encourage friendships.

It is important for children with special needs to have friendships with typically developing children. Children with special needs learn a great deal from peer relationships. There peers will learn a great deal about befriending those who really are more like them than different and valuing all of God's creation.

7. Include the family openly and lovingly in homeschooling group activities.

Your kindness will be deeply appreciated.

8. Allow us the opportunity to educate your co-op, field trip group, and/or social group on the special needs of our child.

This may help others feel more comfortable with our children. We hope they will be valued for who they are and not their diagnosis…and included as fully as possible.

9. Mentoring opportunities.

Older typically developing children can be of great assistance to the family homeschooling a child with special needs during group activities. Having an older buddy guide them through those activities has many mutual benefits.

10. Do remember the siblings.

At times, people forget about the devoted siblings. Growing up alongside a child with special needs comes with many blessings but sometimes they need to be acknowledged for who they are individually. No one really wants to be known only as the sibling of the child with special needs.

11. Invite the parents out or over for an occasional social activity.

We need to just be grownups sometimes and away from our daily responsibilities.

12. If you are so called, offer respite care on occasion.

An hour or two on occasion will provide refreshment for the overwhelmed parent. Perhaps you have a teen willing to be trained in meeting the family’s needs for a short time. Helping with some light household tasks or entertaining a toddler will be huge for a family dealing with a child with special needs.

13. Do not feel sorry for us.

We don’t need sympathy when, for the most part, we are abundantly blessed! Most often we just need fellowship but there are episodic times of grieving for those raising children with special needs.

14. Empathy is genuinely needed at times.

Offer your ear and an open heart when we do struggle. Sometimes we just might need someone to listen. Even if you can’t truly understand, a compassionate heart might be all that is needed.

15. Pray for our families as you feel led.

We all need prayer but we might have different specific needs.

What can the greater homeschooling community do?

This needs to be a ministry to an often marginalized group of families. A little extra effort to support our families will go a long way.

Don’t expect those homeschooling children with special needs to have the time and energy to give to the greater community on a regular basis. They are too often overwhelmed by what they have been called to do – especially in the early years where they are dealing with their child’s diagnosis, seeking answers to why their child isn’t developing typically, frequent visits to physicians and/or therapists, dealing with behavioral challenges and meeting the needs of the rest of their family. This is the time when support is needed most.

Some other suggestions:

• Acknowledge that families homeschooling children with special needs exist – then ask how you can support them.
• Have special needs resources in your local homeschooling library or keep of list of print resources for referral.
• Have links to special needs resources on the internet on your homeschooling association’s website.
• Also include links to local, state and national support groups for those homeschooling children with special needs..
• Seek out those who homeschool children with special needs as mentors for those inquiring about homeschooling their child with special needs.
• Print an occasional article about homeschooling children with special needs in your newsletters.
• Think about convention support. There are many speakers available to support the homeschooling and special needs community.
  

I promise you will be blessed in giving a little or a lot. When you reflect God’s love for all of His creation – especially those with special needs – you will discover a heart more inclined to love as Jesus calls us to love. Bless and be blessed!