Prayer Journals - Finding Peace on the Journey

“Come to me, all who labor and are heavy laden, and I will give you rest.  Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls.  For my yoke is easy, and my burden is light.”   Matthew 11:28-30

Those of us who are raising children with special needs know many places that those who are raising typically developing children cannot know.  We have many more worries and concerns for our children.  We spend an enormous amount of time in physician’s offices, deal with multiple health crises, interact with insurance companies, see that our children receive therapies they need, deal with challenging behaviors, IEPs…

The list goes on and on.

Friends and acquaintances often wonder how we do it all.  I know you know the downward glance and the lateral shaking of heads – and sometimes wonder the same thing.

How do we do it?

We do - we do it as best we can at any given moment.

Not one of us is SuperMom. You might be wearing your SuperMom mask and cape but I know your heart.  I understand your struggles.  I wear the mask and cape too.

We wring our hands in worry.  

We tend to ruminate about our present circumstances and about future unknowns.

We often have trouble sleeping.

We may suffer bouts of depression.

We often stumble, fall and weep in our weakness.

But you won’t see it.  It usually happens when no one is watching.

In our struggles, we often forget that we are not alone.  We forget to consult the One who walks with us every moment of every day.

In our weary, overwhelmed state, we cannot see, hear or feel our Lord’s presence.

We are blind to the One who longs to offer us comfort in the midst of our suffering and the chaos that swirls around us.

Rest assured, He waits for you.  He longs to carry your burden.  

In love, He wants you to give it all to Him.

People often wonder just how to accomplish such a task.   I admit I found it a daunting task too.  But I have a tool that I use which has really helped me to see that it is possible.

Mine is a small spiral notebook which goes everywhere with me.  You won’t know it is special.  You won’t know it carries much of my heart unless I divulge its secret.

I call this little notebook my prayer journal.  The contents are what I have given over to God.  It is a tangible reminder that I am never alone.   It is immediately available just like our Lord is and it waits to hear my heart just like He does.

It is a tool that I can refer back to and see just how God is working in my life, the lives of my husband and children and in the lives of those I pray for every day.

I also find it helps me seek better ways to glorify Him along the journey.  It makes me thoughtful about my words and actions for in the end, I must be held accountable.

In my prayer journal, I record the ways in which my children with and without special needs minister to others, make a difference in this world and glorify God in the process.

It holds my failings too.  It is my safe place to pour out my mistakes, my grievances, and my pain.

The beauty of this prayer journaling is that as I write I know He hears and I can then let go. 

My burden is lightened, if not lifted, and I am free to take on whatever comes my way.

I started quite simply with three columns in my journal -  a simple plan for a simple girl.  The first column was a date for the initial petition, the second for the petition and the third for thanksgivings.  As I really began to see the works of God in my life it grew.  My prayer life began to expand along with a deepening awareness of the Lord’s presence in my daily walk.

My prayer journal started out as a tool and has become a gift.  What started out as a way to a more focused prayer life has become the way to give the Lord my burdens and my sins.  It has become a place where I know profound gratitude for all I am blessed with and by in relationship with Him.

A little nondescript notebook transformed to a place where I know the love and mercy that springs from an ever-growing intimacy with Christ.  This anxious mother and wife transformed into one who trusts the Lord in all things, has confidence in His plan and knows the peace which passes all understanding.

 I walk in amazing grace - to God be the glory.

“Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”   Phil 4:6-7

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.

Different Dream Parenting by Jolene Philo

As you may recall, I have a passion for ministry alongside those with special needs.  As part of my research into this ministry, I have acquired quite the library.  Early on, I read Jolene Philo's book, A Different Dream for My Child  -  Meditations for Parents of Critically or Chronically Ill Children.  I was amazed by the attention to detail in the recollections of the author and those who generously contributed their stories.  Each chapter is short (important to those in crisis with short attention spans), introduced by Scriptural references and closes with prayer.  This  book which offers insights and practical advice as well as comfort for those in the early stages of their journey with a child with special needs.

Recently, I was given a copy of Jolene's new book, Different Dream Parenting - A Practical Guide to Raising a Child with Special Needs. Every parent of a child with special needs should read this book!

This book offers advice and insights from the time diagnosis through young adulthood.  Different Dream Parenting shows us how to walk with God as we deal with the diagnosis, parenting the chronically/critically ill child, marriage and family life, dealing with extended family, working with healthcare professionals, managing the school years, emotional sequelae to multiple, serious procedures, planning the future of the child with special needs...and even the death of a child.

As the parent of two children with significant special needs, I know that many times along the journey I did not know what I needed -- and was often confused as to what might be in the best interest of my child.

Have you ever been so tired,  lost and confused that you didn't have the energy or know what to pray?  Different Dream Parenting offers spiritual comfort and practical, important ways to pray.- with prayers sprinkled throughout the book and seven prayer guides in the appendix.


I think my favorite part of the book deals with dispelling and defeating guilt - an almost universal condition after a diagnosis that indicates a child with have special life-long needs whether they be physical, emotional or intellectual.

"Believing God has a purpose for you and your child on this special needs journey is another way to combat guilt.  In Exodus 4:11, God says, 'And who do you think made the human mouth?  And who makes some mute, some deaf, some sighted, some blind?  Isn't it I, God?'

"According to Exodus 4:11, God created your child with a special need.  Therefore, He has a reason for it.  Maybe He's already revealed what it is.  Maybe He's given you only the faintest inkling.  Maybe you're still waiting for His purpose to be revealed. But your weapon against guilt isn't how much you understand about God's purpose.  Your weapon is a rock hard belief that He has a divine purpose your you child, whether or not you understand what it is."

Though there is no guide to living with a child with special needs that will address all the intricacies that come with the diagnosis and life with a child with special needs, Jolene's book sheds much light on the journey whether you are in crisis or in a more stable place on the journey.  Different Dream Parenting is a practical, thoughtful and insightful guide which offers much food for thought.   As one who has traveled the path dealing with children with special needs for a very long time, I recognize this book for the gem it is - a must read for the journey!

Jolene blogs at Different Dream for My Child where you can find out more about her books.

A Different Dream for My Child

Jolene of Different Dream is featuring my blog this week by publishing an interview with me!

From Jolene's blog:

"DifferentDream.com is a gathering place for parents of special needs children. Dads and moms in the hospital with seriously or terminally ill kids feel isolated. So do parents whose children live with mental disabilities or chronic illnesses.
If you’re one of those parents, DifferentDream.com can help you find answers to questions like:

• Why did God let this happen to our child?
• Where do we find strength to deal with this diagnosis?
• How do we navigate life in the hospital?
• How do we juggle life inside and outside the hospital?
• When we take our chronically ill child home, how will we cope?
• What will life be like if our child dies?
• If our child survives, how do we regain a normal life?"

Jolene has written a book - A Different Dream for My Child - Meditations for Critically or Chronically Ill Children which I just started and can hardly put down. Her writing is compelling, real and filled with hope.

Her book is a must have for every parent walking alongside a child with a critical or chronic illness. I hope to share more after I finish the book!

Jolene is also quite active in ministry alongside individuals with special needs.

Here is part one and then part two of the interview.

I am so grateful for the support and advice of others who have traveled this ministry path before me. I have never met people who give so generously of their experiences as those who minister alongside individuals with special needs. Thanks Jolene!

Thank you Lord for all those you put in my path as I work to meet the needs of individuals with special needs and minister alongside them!


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As God Views...

Through the lens of Love

As He views the rest of His Creation

As His precious Child

Bearing His Image

As an intentional part of His creation

With a ministry to fulfill on earth

As one who bears unique gifts

Valuable to the faith community

As His beloved

Sent to glorify Him in her life

As a sinner

With a repentant heart

He revels in the beauty of her soul

Washed clean by the Blood of the Lamb

Created for eternity

Just like you and me

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The Faith Community - Walking Alongside the Family Living with Special Needs

Families raising and supporting children and/or loved ones with special needs live unique lives – lives filled with many blessings and unexpected joys - but often face greater challenges that those living a so called “typical” life.

Like their loved one with special needs, they are often living on the margins of society. Their first obligation is to family – just like your family but with additional responsibilities which leaves less time for friends and social gatherings.

What can you do to walk alongside families?

Meet them where they are outside of the faith community. We only capture a few moments when we gather together as a church family. They live 24 hours per day with their loved one with special needs. We can be in relationship with them as they deal with the their everyday lives away from the church. A little effort goes a long way!

Acknowledge they are dealing with more than the typical family.

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

Do not be afraid to approach the family.

Many people just do not know what to say or do. Let the family or the individual 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 or supporting the individual with special needs.

You will discover that their lives are more than the individual with special needs diagnosis. They, as a family, are much like your family. Beyond the challenges they face, they have the same dreams and hopes for their loved one...and share many of the same problems.

Don't be afraid to inquire about the individual’s special needs.
Most families are quite willing to share – they live with those special needs day in and day out. Special needs are normalized over time and quite often easily spoken about.

Do not be afraid of the individual with special needs.

They may look different or act differently but they are always people first. Treat them with the same respect, friendliness that you would show anyone else. A little genuine interest in the life of the individual with special needs and their family are precious to them.

The nonverbal individual will appreciate a smile, a light touch and friendly conversation – just like every other individual. Some will have ‘invisible’ special needs and are also in need of your support and understanding.

Educate your families about people with special needs and encourage friendships.

It is important for individuals with special needs to have friendships with those we view as typical. Individuals with special needs learn a great deal from peer relationships. The peer will learn a great deal about befriending those who really are more like them than different and valuing all of God's creation.

Include the family openly and lovingly in group activities.

Your kindness will be deeply appreciated. Giving exposure to the individual with special needs and their family will promote acceptance into the faith community.

Allow the family the opportunity to educate your congregation on the special needs of their child or loved one.

This may help others feel more comfortable with them. Knowledge will breed compassion and the ability to welcome them fully into congregational life – to help them see beyond the diagnosis and to be valued for who they are.

Mentoring opportunities.

Many opportunities exist in meeting the everyday needs of the individual with special needs and their families. A little companionship for the individual with special needs – perhaps going for a cup of coffee or to a movie which may contribute to their future independence – is quite meaningful to the individual and their family.

Do remember the siblings.

At times, people forget about the devoted siblings/family members. Growing up alongside a child with special needs or supporting a loved one 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/relative of an individual with special needs.

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

They need to just be grownups sometimes and away from the usual daily responsibilities.

If you are so called, offer respite care on occasion.
An hour or two on occasion will provide refreshment for the overwhelmed parent/relative. 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 an individual with special needs.

Do not feel sorry for them.

Many families will not welcome sympathy. In fact, they might find it condescending. Most families feel abundantly blessed to have the opportunity to have the individual with special needs in their lives. At times, the family may need a friend during crisis or episodic grieving that normally occurs when living with a child or individual with special needs.

Empathy is genuinely needed at times.

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

Pray for the family as you feel led.
All need prayer but these families might have different specific needs to be brought before the Throne. Ask how you can pray for them. In asking you show support which brings comfort that they are not dealing with challenging issues alone.

What can the wider community do?

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

Don’t expect families with loved ones with special needs to have the time and energy to give to the wider faith 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 loved one’s or child’s diagnosis, seeking answers to why the person/child isn’t developing typically, frequent visits to physicians and/or therapists, dealing with behavioral challenges and/or meeting the needs of the rest of their family. This is the time when support is needed most.

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!

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The Image of God

Do you ever wonder how God looks at His children with special needs? No doubt, He looks at them in the same way he looks at all of us. He doesn’t care about our appearance and other worldly trappings. He values what lies inside of all of us. He looks at our hearts – the place where love lives. God is love and wants us to enter into the love of the Father for the Son and the Son for the Father with all our hearts, minds, and souls.

Are those with special needs given the same heart? Yes!

C.S. Lewis wrote

"There does seem to be an empty space, a vacuum in the heart of every human….Those who believe in God say that he and he alone is the piece that brings completion to the soul. All people need God."

And what about the soul? Every human is given a soul at conception – created by God and the essence of humankind. Do individuals with special needs have a soul? Of course they do!

God values all His children as those created in His image. Shouldn’t the rest of the world?

It’s not a reality yet but we can bring change about by leading with example in entering into relationship with individuals with special needs. Let’s bring them all into the faith community. Let them know they are a child of God - loved and cherished by God and God’s faithful people.

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An Invitation

Perhaps you know my family – You see a happily married couple with two kids, 2 cars, a dog and a cat living in a middle class home in a nice subdivision. We go to church and pay our bills. Sounds pretty average doesn’t it?

If you choose to walk closer with me on this earthly journey, you will see one of my children has Down syndrome. You will see me trying my best to treat her as I treat my oldest daughter – as normally as possible but I must make some adjustments in dealing with her uniqueness. It is part of living with her special needs. Still my family is more like yours than not.

Many will shy away from getting closer. Perhaps they think they really don't want to know what I deal with. I invite you to walk with me. I invite the Church to walk with me. I want you to know my blessings and my joys. The challenges come and go but the joys and the blessings are constant. I want you to see Reagan’s gifts and the added dimension she brings to our lives and what she can offer to the faith community.

Sadly, a large part of the faith community fails to recognize my daughter’s gifts and talents. They fail to see her as an asset, as one who has something to contribute to the Body of Christ.

I’m not speaking of the church we belong to now. Reagan is loved and cherished as a child of God in our present church. They love her for who she is. The path was long but we now have a place to worship, a place where she is welcomed and cared about. The congregation contributes to her spiritual growth and she contributes to spiritual growth of our faith community. There is mutuality present with God in the center. I am deeply moved by where God has led us on our journey but it hasn’t always been easy.

I could name some very special people here who have been our friends throughout Reagan’s life. They have done great things in the little things they offered us. If you are reading this you know who you are. I thank you for your ear, your friendship and the many ways you have blessed us. I thank God for putting you in our lives.

There is a growing movement in the Church in meeting the spiritual needs of individuals with special needs and families raising children with special needs. It requires change. It requires opening hearts and minds. It requires you to walk alongside us. Walk alongside us in faith and love. Be blessed as we have been blessed in knowing this soul, which is not disabled but quite gifted, as we all doing our best to live out the Gospel.

Soon to come - what you can do!

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