Gifts

Reagan has many gifts.  Most of the world will only see her disability but there are so many good, kind and decent souls who recognize her gifts and engage her.

I have countless stories I could tell about the way Reagan moves through the world - the way she moves others and the way she moves this mama's heart.  She attracts special people and people who need what she has to offer.

They see her ability to love others unconditionally.

They see her generosity in the way she gives love away.

They see her sensitivity to where they are in the moment.

They see her nonjudgmental heart.

They see her joy.

If  only we could open the eyes of all to that deep love that can only come from the Father.

The most recent story...

Reagan and I were out looking for a little birthday present for a young friend so we stopped at the local Christian book/gift shop.  As we were paying for our  gift, the lady helping us noticed Reagan and began to engage her in conversation.  Reagan introduced herself and the woman, Louise,  noted and complimented Reagan on her t-shirt.  Her favorite shirt right now is a brilliantly colored tie-dyed shirt with a huge pink heart over her chest.  I commented that it was the perfect shirt for her since she is all about love.  Louise hesitated,  then reached over the counter to touch Reagan's arm and said, "Reagan, will you pray for me - I need love..."

Now, I've got tears rolling down my cheeks while Reagan is quite solemn and nodding in the affirmative and responds with, "I will."

And she does. Louise has a prayer warrior lifting her up to our Heavenly Father.

The Father doesn't see Down syndrome.  He sees her heart and soul.  He created Reagan intentionally in love with a purpose.  She is working to fulfill His will for her and she will be known by the fruits of her labor.

The temple where the Holy Spirit resides in her has its door wide open and I believe God finds His work through her quite pleasing.

I get to live in the shadow of this missionary who spreads the love of God wherever we go.

I am in awe of the power of the Holy Spirit working through Reagan. My heart is so full of gratitude - thankful to be her mom.

It really doesn't get any better than this...

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!

Everyday Heroes

Who are the people you admire and respect?

Those on the cover of People Magazine?

Those who obtain financial success?

Those who boast of their wonderful deeds and service as they ladle soup into bowls?

We live in a culture which has a star mentality.

Nobody really wants to hear the stories of everyday heroes.

Few can tolerate the reality that many families face.

A reality that knows great suffering

Yet knows greater love

How about those parents who tend to their precious little ones receiving chemotherapy?

How about the parents who labor in love with their child who cannot talk, walk or feed themselves?

How about the parents who advocate over and over and over for the child who has no voice.

How about the parents who adopt and rescue children from poverty, sickness and despair?

How about the parents who must hand their child back to the Creator after serious illness?

Parents who struggle

Parents who weep

Because they love

And understand the call before them

Heroes who give beyond their own brokenness

 

Who walk in grace

Infused with Divine strength

        

Few will have their story told or make the cover of any magazine. 

 

They will never receive a medal for their service

Heroes just the same

More than I ever dreamed...

This gift is now eighteen!

I often look at her and wonder just where the time went.  Not all that long ago a sweet newborn, then a charming little girl and now a beautiful young lady.

So many ways I am blessed...

She is a wonderful friend and companion.  She listen's, hears and sometimes reads the hearts of others with an uncanny,  intuitive ear.

She is grateful in the little things as well as the big things.  Where gratitude lives, joy flows and it flows deep and wide here.

She has a beautiful spirit - filled with love and charity.  She has always been the first to respond to another's needs whether it be a kind word, a hug or a prayer.

Her love is unconditional and freely given.  Whether it be a friend,  the cashier at the grocery store or a the homeless man on the curb, she sees, she hears, she responds in love.

She is the first to say I am sorry when she has done wrong and the first to try to make a situation better - just because it is the right thing to do.   Mending wrongs and weaving forgiveness into every situation that calls for it.

This image-bearer gets it right.  Love is all that matters.

She lives in love, loves, and reflects love.

Do I grieve for who she is not in the eyes of this world?

I cannot.

Because who she is, is more than I ever dreamed.

Heart Work

As I sat with other moms who have children with special needs last night, I pondered how our lives were different from those raising typically developing children.  Specifically, about the extraordinary heart work that burdens us at times.

They ponder difficult questions -  questions that most parents do not have to entertain for our children of significant intellectual disabilities.

Our children: 

Most likely will never live alone.

Most won’t drive a car.

They are more susceptible to others who would take advantage of them in evil ways.

The list goes on and on…

We still have dreams and hold on to the dreams of our children.

…and fears for their future.

As a group we ponder the questions:

What am I going to do when…

How will I handle this…

What about those who do not understand…

Tough questions with nebulous answers if any.  We will do our best with what we have to work with and the hope that the hand of God is displayed in our response.

We understand what the future holds to a certain degree.  We grieve and rejoice.  There are tears and laughter.

We are secure in knowing that the Lord will provide what He desires for our loved ones to complete their ministry on earth.

Yet our fears remain out of our own brokenness and the brokenness of the world.

I am honored to know these women.  I am blessed by their transparency and their profound faith.

For the reader who is isolated and feeling alone on this journey as the parent or caretaker of an individual with special needs please find a community in which you can share and be encouraged and strengthened for the journey.

Here is a great place to start

Not Alone - Where Special Parents Find Community 

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...

Loving My Life

I have been wearing my I love my life* t-shirt quite often these days.  It brings me great joy to display my contentment with life.  People will often smile at me comment on my shirt as if they understand.  I often wonder about their stories but usually the opportunity doesn't present itself to take the time to converse.  

I've often pondered how I would  describe the breadth and depth of that which makes up this time and place in my life so wondrous and beautiful.  If it were a tapestry, it would be woven with rich colors giving it a dimension that I think few know.  Some will not have the life experiences I know or  perhaps they feel burdened by what life has placed before them.

I understand that place too.  I've been there.

I knew a childhood filled with periods of poverty, dysfunction, abuse and pain.  I was never to know what childhood is.

I've plumbed the depths of  grief after the devastating loss of my firstborn.  A subsequent miscarriage took me back to that all too familiar place.

I understand the uncertainty of serious personal illness.

I know parenting of two children with profound disabilities.  I know their struggles.  I know their pain.

I could be a vastly different person from what I am today.  I could feel bitter and burdened by what life has put before me.  I know so many who choose that path when faced with their own personal tragedies.

Yes, choose.

I could have passively wallowed in pain and bitterness but I chose not to remain there at any stage of my life.  Sure there were times when I was too weary to move forward.  At times, I held on tightly to my pain because by letting go of it  felt like the love I'd known would vanish forever.

Instead, I choose to be grateful for what I've known and know today.

I'm grateful for the little things like my cat gently waking me in the morning with her sandpaper tongue for no other reason than she desires my company.  I'm grateful for the wagging tail of my pup that greets me in my half slumberous state when I exit my bedroom in the morning.

I'm grateful for the big things that I know in a loving husband and the sweetness of motherhood in my living children.

I'm grateful for the brief time I had with my children who now dance with angels in heaven.

I am grateful for the presence of the young lady with Down syndrome in my life and all the lessons in life that  I've learned from her and through her. 

I'm grateful for the daughter that has reached young adulthood, is successful in college who is wise beyond her years.

I'm grateful for the opportunity and blessings that come with our homeschooling lifestyle.  That lifestyle has grown us and taught us all so many valuable lessons on loving each other and learning together.

I thank God all day long for His work in me and around me.

I'm even grateful for days when the temperature reaches 104 degrees outside.

Through all my trials, I've known the love of my heavenly Father.  I've felt the embrace of my loving Savior.  The gentle nudge of the Holy Spirit in my heart calling me to new wondrous places where love resides and hope never dies.  I feel a little closer to heaven every day.

A tapestry will never do as a representation of the breadth and depth of the beauty in my life.  Words will never fully describe what a grateful heart will know in the beauty that comes with embracing what comes, living in my Father's will and letting the Holy Spirit be my guide.  I can only hope my soul will be pleasing to God when I am called home.

I do so love my life.

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*If you don't know the story of Julie and Derrick Tennant, please visit them at The Love Chromosome.  You will be inspired by their story and perhaps you will get your own t-shirt!

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Linking up with A Wise Woman Builds Her Home

Wise Words

As I journey on this road less traveled, I often recall these wise words of a fellow traveler:

"As parents, we trust that the Lord will provide all that is needed for His (our) children to fulfill His mission for them while on earth."

We trust He will provide for our typically developing children and, perhaps more so, for our children with special needs.

These words bring immense comfort to me as I consider my daughter's present path and future.  I trust He will put all we need in our path so that Reagan's ministry on earth will be according to His will.

I have seen the Lord's work in me and my work in helping Reagan overcome obstacles in learning. He travels this path with me.  He places before me all that I need and more.  I trust He is at work in her and for her.

I know her heart.  It projects love.  Love for the Lord, love for her family and love for all she touches.

I am fascinated by her mind and how she thinks.  The questions she asks are thoughtful.  Her assessment of situations is often right on track.

Does she know everything that other 17 year-olds know?  Absolutely not.

Academic knowledge does not define her.

Reagan does know relationships better than any other person I know.  She gives and receives.  She is transparent and without inhibition in sharing herself.  She knows anger but harbors no grudges.  Her forgiveness of the transgressions of others is genuine and immediate.  She knows sadness which makes her highly sensitive to it in others.

Reagan's relationships define her.  Her relationships with God and humanity. I am saddened by those who have eyes that cannot see.  Eyes which do not value her and others with Down syndrome.

Somehow I doubt that St. Peter checks IQs at the gates of heaven.  God does not care about how smart we are.  He does care about how we love Him and each other.

So, let us learn from Reagan.  Learn how to love and forgive like she does.

Let us walk in love and forgiveness for a taste of heaven on earth and joy in the journey.

Celebrating Every Day

Today is World Down Syndrome Day.  The Down syndrome community is celebrating globally with a great deal of excitement in the air.  Videos abound and there is much chatter over the internet about all that is positive about raising a child with Down syndrome or loving an individual with Down syndrome.

BUT it isn’t just about this one day.  I live with and love someone with Down syndrome.  I work every day to teach her, mold her and love her.  

Because I love her, the work is easy.  We work together, play together and joy springs forth.

The world doesn’t see the love we share or the joy we know.

Most just see is the common features individuals with Down syndrome share and judge that life to be without value.

Every day, around the globe, unborn babies with Down syndrome are terminated.

Words like burden, hardship, worthless, suffering, retarded are used to advise expectant parents with a  prenatal diagnosis of Down syndrome - tragic and inexcusable.

As we celebrate World Down Syndrome Day, we celebrate truth.

Living and loving someone with Down syndrome is knowing joy and unconditional love.


 It is about finding whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things (Phil 4:8) 

Think about such things and know…

...this is our life and that is worth celebrating every day.

World Down Syndrome Day IDSC for Life

 From International Down Syndrome Coalition for Life

"We were inspired by a video, in which mothers were asked if they could go back, and say something to themselves, before they became mothers, what would you say? So we decided we would ask all parents if they could go back before they had a baby, or adopted a baby with Down syndrome, what would you say? Their responses were beyond anything we dreamed. This video, celebrating World Down Syndrome Day, summarizes and brings to light exactly why we celebrate this day! We hope that others will see that our lives are filled with love and joy, and all things that are good and amazing."

Like IDSC for Life on Facebook!

It's A Wonderful Life

Remember the movie called It’s a Wonderful Life with James Stewart and Donna Reed?  Our Christmas season is incomplete without at least one viewing of this film.  After a series of unfortunate events the lead character, George Bailey, contemplates suicide, thinking his loved ones would be better off if he were dead.  Prayers from concerned friends and family storm heaven.  An angel, Clarence, is sent to earth to intervene. Clarence lets George look at life in his home town, Bedford Falls,  to see what life would look like if he had never existed.    The town is drastically different without George.  It becomes a place where hardship is rampant, filled with people who lack compassion - a place that knows no joy.  George comes to realize that his life is worthwhile and valuable despite the trials he faces, and George returns filled with renewed zeal and love for his life. 

 I cry every time I see this movie.

Approximately ninety-two percent of expectant parents given a prenatal diagnosis of Down syndrome chose termination over life with Down syndrome. The reality is that they will never have the opportunity to know what they are missing. They will never know the joy that I know as I do with Reagan, my daughter with Down syndrome.  Their family and friends will never know what they have missed.

I don’t want to think about what life would be like without Reagan.  Just expressing the thought brings tears to my eyes.  I remember what life was like before Reagan and what I know now.

I live a marvelous love story.  I have a wonderful life! 

 I live in a place that is filled with happiness and joy.  I live my life with profound gratitude for what God has placed before me – including and especially for my child with Down syndrome.  

Reagan has a wonderful life.  You only need ask her.

She is valued and values others.

She is loved and loves. 

 

She gives and receives. 

She learns and she teaches.

She sins and asks forgiveness

She has dreams & desires...

Just like you

Yes, there are challenges and hardships – as with any child.  Isn’t there an element of sacrifice in all loving relationships?

If you are here because you are carrying an unborn child with Down syndrome, let me be your Clarence.  

See that our life is a wonderful life…

…and know that all life is precious.

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.

Dear Caregiver

I wrote this several years ago for Reagan’s first extended time away from home.  I think she was about ten when she went to church camp for the first time.   I wasn’t sure how well-schooled her camp counselor might be in dealing with a child with special needs so I tried to briefly cover some bases to assist the counselor and ensure that Reagan had the best experience possible.

I broke down my concerns and what might be important for the counselor to know into various categories.  I tried to make it simple and easy to read so as not to be overwhelming to someone who might not know the lingo that we all come to know as the parent of a child with special needs.

Interestingly enough, her first camp counselor turned out to be a special education teacher who has a heart for children with Down syndrome.  What a blessing that week was for all of us!

I think this format would be easy to adapt to many other situations where the caregiver or  volunteer might not be comfortable without knowing a little something about our kiddos with special needs such as Sunday School, youth group or other youth activities.

Dear ______, 

Reagan is excited about spending time with you and wants you to know a few things about her.

Reagan has Down syndrome.  Children with Down syndrome have cognitive delays, speech and language delays and physical challenges.  In getting to know Reagan, the following might be helpful:

Personhood

Reagan has Down syndrome but it doesn’t define her.  She is a child first.  She has the same dreams and desires as other children.  She wants to do and participate with others without a great deal of attention drawn to her or her special needs.  Treat her as you treat all other children.

Safety

Of  utmost importance is safety.  Children with Down syndrome are known for wandering off in the blink of an eye.  It is important to have a pair of eyes trained on her as she participates in individual and group activities.  You might expect her to wander if she is bored, if the activity is too loud/overstimulating or if she is upset.

Reagan may make unwise decisions and needs to be watched closely in new situations – and redirected/corrected as necessary.

Developmental Age

Though Reagan is __, her developmental age is younger.  The most important element of her younger developmental age is that she is a concrete thinker.   Therefore, communication should be conducted in a concrete manner - simple, familiar (but not babyish) language with shorter, concise sentence structure.  Idioms, figures of speech and slang are often meaningless to her.

Speech and Language

Reagan has wonderful language skills and can express her wants and needs quite well.  She understands more than she can say.

Reagan’s speech can be difficult to understand at times.  Ask her to slow down and try again and she usually corrects any errors. 

Memory

Reagan has trouble with her short-term memory.  Repeat rules or commands as necessary.  Her long-term memory is excellent.  Once she knows you and loves you, you will be her best friend forever.

Processing

Reagan may not fully understand what you want from her at times - especially in new situations.  If necessary, simplify, repeat, and/or rephrase requests. 

Behavior

Reagan is generally compliant but has some stubborn moments.  It helps to verbalize expectations and what needs to be done.  Reagan will not understand most nonverbal cues unless they are specifically taught.  For example, most children respond to gentle shoulder pressure to move along.  Reagan will not understand unless you verbalize your expectations at the given moment.

She may need longer to transition to a new activity unless she is aware of how the day will go.  A few minutes before transition to remind her of what is coming next should help immensely.

To encourage compliance:

1.       Insist on eye contact when speaking to her

2.       Keep language simple and straightforward

3.       Simplify, rephrase and/or repeat instructions as needed

4.       Have her repeat what you told her if necessary

Negative consequences are generally ineffective with Reagan.  Gentle, persistent encouragement is most effective as is “1, 2, 3 magic.”

If Reagan is bored or tired, she may enter into her imaginary world.  It is preferable for her to stay in the real world but sometimes she needs a break from the demands of stressful (above her developmental level) situations.

Social

Reagan is a very social child and loves being around people.  She is occasionally socially inappropriate.

She loves to hug others.  “High fives” or a handshake should be encouraged instead of hugs.

Violating the personal space of others is common.   We use the term “personal space bubble” when referring to a violation and she will respond appropriately by moving away.

 

Physical

Reagan has fine motor (small muscles i.e. fingers) and gross motor (large muscles) delays.  She may need assistance with crafts and games.  She generally moves slower than her peers and needs encouragement at times to keep up with the group.

Reagan is a good swimmer and independent in the pool.

Reagan has a permanent pacemaker and cannot play contact sports/games.

She wears her glasses 24/7 (except in the pool) and cannot see without them.

Hygiene

Reagan is independent in self care but may need reminders to complete activities of daily living.

Church Services

Reagan knows what is expected during church services and is generally well-behaved.  She participates fully and takes Communion.

Spiritual Gifts

Reagan has been blessed with many gifts which will enfold before your eyes.  She loves unconditionally and very sensitive to the feelings of others.  She has a joyful spirit that is contagious.  All who take the time to know her will be immensely blessed.