T-minus 2 days

My lofty goal of writing a post a day hit the wall of reality: kids, meals, school, laundry, spouse, groceries.   I may have been slowed down, but I’m not done writing yet…there are 2 more days until Sept 9th.


Here’s FACT # 4

FASD causes underlying changes in brain structure and function resulting in primary and secondary behavioral changes. 

Following are a few of the behaviors FASD causes:

• A person with FASD often acts first and is then able to see the problem after the fact. 

Effect on child:  Doing the action - - throwing, hitting, peeing pants, lying, touch/grab things -- triggers their memory that it was an inappropriate action/behavior.

• A person with FASD often has memory impairment.

Effect on child: They are forgetful & needs frequent reminders.

• A person with FASD often has difficulty learning from past experiences - repeats the same mistake over and over again in spite of increased punishment.

Effect on child: They often do not even understand the punishment and rarely makes the connection between the violation and the consequence.

• A person with FASD often has difficulty with abstract concepts.

Effect on child: They do not visualize anything.

• A person with FASD often has difficulty understanding safety vs. danger, friend vs. stranger, or distinguishing fantasy from reality.

Effect on child:  They will believe anything & walk away with anyone who is kind to them.

•  A person with FASD often has difficulty forming links and associations, often unable to apply a learned rule in a new setting.

Effect on child: Understands no throwing on the playground; doesn’t apply it to the classroom.

• A person with FASD often repeats rules verbatim, then fails to apply the rules.

Effect on child: They can tell you what’s expected, they just can’t apply what’s expected, especially when over-stimulated and excited.

•  A person with FASD is often prone to confabulation and lying. Lying is to deliver a false statement to another person which the speaking person knows is not the whole truth, intentionally. In psychology, confabulation is the spontaneous narrative report of events that never happened.

Effect on child:  They will blend actual events with imagination and/or stories heard without understanding the ramifications of their confabulation. Other times, they will boldface lie just as a 4-year old child would.

• A person with FASD may talk excessively, yet is unable to engage in a meaningful exchange.

Effect on child:  They may be unable to express emotions and will most often laugh while being disciplined - - they are not being disrespectful, they are frustrated and unable to express it.

•  A person with FASD often has the inability to do more than one task at a time.

Effect on child:   Choose reading, playing, coloring, going to the bathroom, or eating.


Did you just read that entire list?  If so, thanks for tracking with me.

Now read it again. Slowly.

Imagine that all of those primary behaviors were going on in your brain. All at once.

Imagine how frustrated and confused and overwhelmed you would feel. All the time.

Imagine there being no medication to slow down any of these affects. None.

Imagine these behaviors lasting your entire life.

Welcome to the devastation caused by FASD. Welcome to the world of my child and thousands like him.  Now do you begin to understand why I am so passionate about educating everyone about the dangers of drinking any alcohol while pregnant?

Help spread the word and prevent another child from ever living with this disability! Please take the time to pass this blog post on to at least 1 of your friends, link it back to your blog, share it on Facebook, or tweet it on Twitter.

FASD Awareness Day: T-minus 6 days

Thanks for reading along with me as I journey to Fetal Alcohol Spectrum Disorders Day: September 9th.  There is so much I want to share...

Fact #3:

It takes children with FASD longer to grow up.


My child's greatest disadvantage is that he looks normal.  If you saw him on a playground, the first thing you would notice is that he is a very handsome boy. He is average weight and average height. He loves to laugh. He loves to run and play.

However, if you paused to observe him for longer than than 15 minutes you would soon change your opinion of him.  You would hear him babble with giddiness and excitement. You would see him appear to tease other kids.  You would watch him cut in line on the slide, throw sand in the air, pick up gum from under the teeter-totter to happily put in his mouth, and wander around talking to every stranger sitting on park benches. You would see him gravitate toward the younger children on the playground. You would see the mothers of those preschool children casting wary glances at a boy who looks so old wanting to play in the sandbox or on the baby swings. You would begin to think that he is obnoxious and unruly. You'd probably question his parents child-raising abilities. You'd find yourself wondering if he is spoiled and runs the household.  By now, you're most certainly irritated that he is annoying your child.

But here's the truth:  my son is dysmature, not immature.  Dysmaturity means a person is functioning at a younger developmental level where immaturity suggests the capacity to catch up with chronological age.  I really like this quote taken from Whitecrow Village website:

"The IQ of persons with FASD is most often within the normal range, yet they do not have the ability to meet many of society’s age based social and academic expectations.  Since FASD is usually not outwardly visible, the effects of dysmaturity on persons with FASD can be puzzling to themselves and to those around them."

For example, a child with FASD who is 7 often functions as a 3-5 year old would; a child with FASD who is 11 often functions between age 7-9.

So you see, my son is being socially appropriate at his younger developmental level.

To be honest, we have no idea how far my son will mature developmentally.  He may develop the same as other children, only at a slower pace (and yes... many 23 year old men act like 17 year old boys!)  or he may reach a developmental age and never move beyond.  Each day he wakes up and makes progress is a blessing we don't take for granted!

Please remember: Adjusting expectations to be developmentally appropriate will greatly help a child with FASD.    


If this post is your first exposure to one of the many life long disabilities caused by prenatal alcohol consumption, I hope you will contact me and let me know your thoughts.  As a mother of a child who will have life-long challenges I challenge you to have 0 drinks for 9 months. 

I hope my posts encourage many who are living with the realities of FASD, and educates many others who are new to the disability.

FASD Awareness Day: T-minus 7 days

Welcome to my second post about Fetal Alcohol Spectrum Disorders Awareness Day.

FASD FACT  #2:  
Prenatal alcohol exposure causes brain damage that affects behaviors, e.g., poor judgement, difficulty learning from experience and difficulty understanding consequences. 

FASD is most often an invisible physical disability. 

Here is a very insightful quote from the National Center for Biotechnology Information

"Prenatal alcohol exposure is known to disrupt many areas of brain development, including the cerebellum, hippocampus, basal ganglia, and the corpus callosum (Sowell et al, 2001; Mattson, Schoenfeld, and Riley, 1999). Other pathologic changes to the central nervous system include enlarged ventricles, abnormal neural/glial migration, and changes in the microvasculature in regions of the brain such as the cerebellum and hippocampus (Miller, 1992).

.... More likely, there will be identifiable patterns related to differential alcohol exposure (timing, amount, and frequency), combined with other genetic and environmental factors. These patterns may be reflective of general patterns of atypical prenatal brain development due to a combination of factors, and may not be specific to alcohol as a teratogen. However, some of the more commonly identified problem areas in FASD include attention, learning and memory, abstract problem solving and strategy generation. While individuals with FASD will often be within normal limits on measures of IQ, they often have other significant neurocognitive deficits. Many areas of cognitive functioning are only peripherally assessed through an IQ measure, such as attention and concentration. In addition, IQ testing does not assess other domains, such as higher order executive functions. These deficits will have a profound effect on the ability of a person with FASD to function, and without appropriate supports and interventions this can lead to secondary impairments."

So what does that mean in terms of parenting???

We have learned the importance of giving appropriate environmental accommodations -  no one would discipline a blind child for not reading the blackboard or expect a child in a wheelchair to run a marathon. FASD is an invisible physical disability.

It means no down-time as a parent.

It means constant supervision.

It means a whole new way of parenting - - far different from the way my parents raised me or my husbands parents raised him.  

The child needs a stable home: A healthy, processed food free diet. Structure. Routine. Boundaries.

It is 110% work to raise a child affected by Fetal Alcohol.  It is life long for the child.  It is life long for the parent raising the child.

Which is why I cannot say it too many times:  If a woman is of childbearing years she should avoid alcohol during the time she is ovulating and fertile for pregnancy.

It's that simple. Really.

Please pass this info on to others. 

From one parent to another: let's educate our communities and prevent another child from ever suffering this life-long disability.

FASD Awareness Day: T-minus 8 days

September 9th, Fetal Alcohol Spectrum Disorders Awareness Day is almost here, so I want to take the next 8 days to give you some startling facts about Fetal Alcohol.  My hope is to promote awareness and education which will enable change.  And change begins with me sharing with my family, with my friends, with my city, with my state, with my country and with the world. So here I go, sharing with YOU.  Please join my conversation...tell me what surprises you, what angers you, what frightens you about Fetal Alcohol Spectrum Disorder.

You can start by reading one of my archived posts which fills in the details as to why I started this blog last year.

Now on to the real purpose of this post:

FASD FACT  #1: 
According to the CDC 1 in 100 live births are affected by FASD in the US.  FASD is the leading cause of cognitive disability in Western Civilization...yet it is 100% preventable!

What this means is that you are surrounded by more children than you realize who are affected by FASD.  More babies are born with FAS, than with HIV or Autism or Downs Syndrome. 

Consider this interesting reality: children who are with biological families are diagnosed with ADHD, while children placed in foster or adoptive homes are diagnosed with FASD.  Our desire is not to criticize past mistakes, but to educate those we come in contact with to the fact that FASD is very prevalent right here in our own communities. In your neighborhood.  In your school district. In your state.

What grieves my heart the most? The fact that Fetal Alcohol Spectrum Disorder is absolutely, positively 100% preventable. 

As a mother who lives the rollercoaster of raising a child with FASD, here is my plea: If a woman is of childbearing years she should avoid alcohol during the time she is ovulating and fertile for pregnancy.

It's that simple. Really.

I know there are those who argue that "it's a woman's body and she has the right to do what she wants...and no one has the right to tell her not to drink."   Just for a moment, think about this...those same women avoid tuna and sushi because there might just possibly be a trace of mercury.  Or they willingly avoid caffeine.  Hmmmm.  Possibly a trace of mercury, so sushi is skipped?  Yet 100% positive for alcohol and "it's my body"?  I just don't get the validity of that argument.

Here's the deal with alcohol: it goes directly from the mama's lips, into her bloodstream and on into the amniotic sac where the developing baby's body is basically soaking in alcohol. 

Here's what the NCBI  says about it:
"Because the brain is constantly developing throughout gestation, the effects of prenatal alcohol exposure on the developing brain can occur at any point. Therefore, exposure at different times and with different doses during gestation may explain why FASD presents as a spectrum of central nervous system dysfunction. In addition, individual differences in the mother and child modify the effect of prenatal exposure in the individual, and not every child exposed is affected (Streissguth, 1997)."

So for the life long sake of your unborn child...just say no for 9 months. 0 drinks for 9 months.  It's really not asking for much.   Trust me on this one...the 9 months of no alcohol will be nothing compared to the frustrations that you will be avoiding for the rest of the child's life!!

Come back for more information tomorrow....

On Being Adequate

Are you the parent/caregiver of someone with disabilities? Some days it does feels hopeless. Some days are repetitively frustrating.  Some days are exhaustively exasperating. 

I love when I find “new” truths in God’s word. No matter how many times I read Scripture, it's awesome that I always stumble upon something that I’d overlooked in the past.

Take II Corinthians 3:4-6 for instance. “...such confidence we have through Christ toward God. Not that we are adequate in ourselves to consider anything as coming from ourselves, but our adequacy is from God, who also made us adequate a servants...”

Did God write that just for me, knowing that I would one day be a mom of a child with FASD?

Or did He write it for my son who has FASD?

I am NOT adequate in myself. I struggle daily asking God, “why me???”.

Not in a feeling sorry for myself kind of way, but in a sincere lack of self-confidence voice, being overwhelmed with the enormous, all-consuming responsibility that is involved in raising a child with FASD and disabilities.   Now I read these verses and it hits me: I don’t need to worry about it because I - in my own strength - am not adequate, nor will I ever be adequate.

BUT GOD. I love that phrase in scripture. BUT ...  It means, stop worrying and fretting because just ahead, in the next sentence, there will be an amazing unexplainable, almost incomprehensible truth, that will eliminate all need for doubt if it is just believed and acted upon. So take a deep breath at the “but” and read on….."but my adequacy is from God who also made me adequate as a servant”.

There it is, plain and simple, written forever in black and white. My adequacy is from God!

Therein lies my confidence. I can parent this child because God made me adequate.  And not only did He make me adequate, He specifically made me adequate as a servant.  The definition of  “servant” holds another one of those Greek mysteries which the English language has demolished. It does not mean servile as a slave, but voluntary as an attendant, a reference to the service or advantage rendered to another (as in menial tasks).

I’ve been pondering the implication of these verses for days. My role as the mother of a child with FASD and disabilities is so clearly defined in these verses.

Could there be a more accurate description of what a parent of a child with FASD does than act as an attendant and perform menial tasks. I think not. I am my son’s external brain! I daily assist him with the most menial tasks...
Yes, the underpants go on before the shorts. 
Yes, the milk always goes in the fridge.
Really! There is this thing in our house called a toilet.
No, you cannot play in the snow in just a swimsuit.

Are you the parent/caregiver of someone with disabilities? Some days it feels hopeless. Some days are repetitively frustrating.  Some days are exhaustively exasperating.

Be encouraged that your life is an “advantage rendered to another”. Yes, YOU are adequate to take care of your child! YOU are a blessing.

Find strength and meaning in this: “Not that we are adequate in ourselves to consider anything as coming from ourselves, but our adequacy is from God, who also made us adequate a servants...”

An Inconvenient Life

I read that if people with special needs were classified as a race, they would together be the largest unreached peoples in the world.  In my average size city there are at least 6 elementary schools, 3 middle schools and 3 high schools. Each of those public schools have a Life Skills class with approximately 10 kids full-time. That means that at a minimum there are 120 families with special needs and realistically twice that many families if all the kids on IEP’s, at all schools were counted. A low estimate is there are around 200 hundred families with no church loving them or supporting them emotionally…but there are over 81 churches listed in the public directory. Yet, sadly, not one of them is making an effort to reach this “people group”. These local churches are overlooking an enormous market right out their front window: families with special needs.

I know this for a fact because we have contacted many of them and specifically attended 4 of them with the hope they were interested in starting a disability outreach. The disappointment for us, is that they all talked about it from their mission statements and prayers and speeches: they want to embrace diversity and reach all people and be missionaries… yet in their efforts to reach the world they’ve stumbled over us at their doorstep and kept right on walking.

We have been an inconvenience to many churches; they honestly don’t know what to do with families like mine.

Being an inconvenience is something we have experienced in many places such as restaurants, social outings, birthday parties, classrooms, shops… but the church - - really, it just baffles my mind.  This is supposed to be a place of refuge, yet it is where we have experienced our deepest hurts. Over the years there have been two churches which we attended regularly but were eventually told, “unless you sit with your son in sunday school, he cannot come back.” Tears of disappointment mingle with righteous indignation as those words pierce my deepest soul. As acid poured on an open wound, the rawest pain was at both of those churches we counted the pastor and his wife as truly some of our dearest friends. And while it was not the pastor that asked us to leave, he did not make any effort to begin a disability ministry or intercede on our behalf. Pain does not go much deeper as we dishearteningly left those churches.

Hurt swells and rises in my throat when I know that I am not alone in my experience. If I dare to raise the subject to another family with special needs, I am met with tears of empathy. Why? Why must those who are different be an inconvenience?  Is not the church the safe haven, the hospital for the weak?

On Sunday mornings I wake up with dread. Should I take my child to Sunday School? Should I leave him with me in the service? Should we just stay home? Sunday mornings are an enormous hassle; it’s often not worth the frustration. Is it really worth the effort to go church, to sit with our bodies tense, our minds not relaxed for a nanosecond…waiting to hear the squeal of our child from down the hallway…knowing it is a matter of minutes until the flash of the beeper lights red…  cringing as our number is broadcast on the call box… getting an evil eye from those around us…letting out a deep sigh of discouragement as once again we are called upon to go retrieve our child.

My child needs care and attention 24/7. Twenty four hours a day, seven days a week I am called by God to care for and love my child and I do so willingly and without reserve. By the dawn of Sunday morning my soul is craving after God, my emotions are frazzled, I am on the verge of tears, my body is weary. I want to sit in a pew for 90 minutes and breathe in the sweet peace of the Holy Spirit reviving my parched soul. I want my spirit and heart encouraged and refreshed for a week ahead. I want to know that for 90 minutes I can sit calmly and soak in the truth of God, my mind at peace knowing my child is safe and loved in the same building. Why does the church not feel the cry of  families such as mine?

It grieves me deeply that as I interact with families of special needs all across the United States and beyond, I hear firsthand how many of them are angry at the church, how many of them have been rejected by the church, how many of them have been asked to leave a service. It is just so wrong on every level! Oh how the heart of God must be breaking for His precious children who are desperately craving connection, but are being brushed aside.

Clearly scripture says “Pure and undefiled religion before our God and Father is this: to look after orphans and widows in their distress”, and while the “disabled” are not specific in that clause, the heart of Jesus was indeed drawn towards this people group.  Read in the four gospels of Matthew, Mark, Luke and John how often Jesus healed one with seizures, one possessed in the mind, another broken in body or those overcome by physical disorder.  Where, I humbly ask is the heart of Jesus via the church for my child, for my family?

Oh Church, take off your “WWJD” bracelets and charms and look around you! Look out your rose colored windows and allow your eyes to linger on the hundreds of hurting families right in your neighborhood. Moms, dads, caregivers… craving a simple 90 minutes of peace and reflection and spiritual renewal. 

I promise the local church, if they would open their doors, their hearts, their arms to those with special needs, they would not even need pursue them - - families would flock to your church! Then those who know nothing of the saving grace of God, would see Him alive via the action of the church, and they would be unable to deny His love. And those who already know the One who loves without boundaries, would be encouraged and renewed each week!

Whether you read this as a family seeking 90 minutes of peace, or as a church member needing to offer hope… my prayer is that in my child’s lifetime this inconvenience will soon end and never again will a family leave a church feeling more discouraged than when they entered.

On Being a Lifeline

We floated the river this weekend as temps reached a scorching 91 degrees - which here in the high desert is HOT, HOT, HOT. As such we were joined by hundreds, honestly closer to a thousand or so of other like-minded, over-heated residents of this outdoor adventure community.

There were couples on air mattresses, grandmas in kayaks, rednecks soaking up skin cancer and lung cancer, SUP's a plenty and families on rafts roped to kids in tubes. The latter would include us: 1 large float tied to 2 smaller floats.

About halfway down the river, after being tugged on continually by my son and his rope, I looked at my husband and said ,"Just once in my life I’d like to float this river without having someone tied to me and constantly pulling me. I just want to relax and float free".

He laughed and replied," Ummm, sweetie, that's your life everyday isn't it."

An epiphany! Right there in the river surrounded by water, noise, sun and people.  Yes, that IS my life!

I am tied to my son.
There is no relaxing.  There is no free float.

Today on the float he hung on to my rope and wouldn't relax or let go for one moment. I did loose my cool with him after being tugged the wrong way one too many times: I threatened to untie the rope if he didn't stop.

And so it is in daily life.  He rarely let's me out of his sight without panicking. To go to school, yes. But for me to go on a date or overnight -- the rope just got jerked involuntarily out of his hand and he fights anyone or anything to regain control and reattach to me.

I realize that indeed he does need the rope attached to me for many safety reasons:  like having no judgment. None. Zero discernment. No ability to differentiate between a stranger and a friend. Not being able to learn from a mistake -- YES fire always burns, NO you cannot eat the dog food or drink from the toilet, NO you cannot walk in front of a speeding car or swing or bike.

I try so hard to be his lifeline and give him the security he needs.  But I do loose my cool.  There are days when I just want to yell at him, "what is wrong with you??? Argh!! Why can't you just cooperate for one afternoon? Is that really so much to ask?"


I know the answer even before the thought or words flow from my tongue.  I need to remind myself that he is developmentally 4 or 5 years younger than his chronological age. His disabilities are invisible, yet oh so very, very real!  He is so handsome, he looks so innocent and "normal". He has no outward signs of FASD. Sometimes I think I need to make him wear a t-shirt emblazoned with the message " Be patient with me I have FASD".

Even on long hot summer days it's good that God gave me such a patient and amazing husband to gently make me aware of the importance, the high calling of being a lifeline, the reality of being tied to someone who so desperately needs me to be there for him.

I think I'll go make a rope bracelet as a reminder.

Being a Thermostat Mom

With the recent celebration of Mothers Day, it’s given me more time to ponder the role of mom.

I’ve had the privileged of being raised by a woman who loves God, prayed (still prays) for me, single-handedly took 3 active siblings on many, many adventures, put up with my teenage moods, doesn’t complain or whine, is loved by all who know her and who adores her grandchildren.  And a double blessing for me: my maternal grandmother was all things my mom is and more. 

Now I’m on the other side, having the joy of being a mom for 7 years.  Granted there were painful years of infertility that preceded the joy of children, but I’ll save that for another time, another place.  In all these 7 years, I find myself constantly learning, ever growing right along side of my boys.  Not sure that's a great thing for the boys, but they are troopers and I hope they won’t remember every single mistake I’ve made. I have to trust the grace of God to use the good and the bad to train them up in the way they should go.
               
You’ve heard the saying “if momma ain’t happy, ain’t nobody happy”.  I’m realizing just how much truth there is in that humorous little quote.

I’ve been contemplating that while dads are thermometers, and quite essential to the well-rounded emotional health of a child, it’s the mom who is the thermostat in the family. My moods, my emotions, my energy determines the temperature of the rest of the family. If I’m tired and grumpy, my kids are grumpy. If I complain, my kids whine. If I’m critical, my kids follow suit…and usually in public. But when I laugh, when I play silly games, when I have tickle tournaments and pillow fights…the entire mood of my family is buoyed. 

When they leave my presence and head off to school each morning, I want their minds and hearts to be filled with positive words of affirmation. I want them to know that they are the most amazing boys, created by a God who knows every detail of their life and who loves them with an unconditional love. I want them to know that whether they have a green day…or a yellow…or a red day…that they live in a home with a mom who will always love them.

Back to the heading them off to school each morning…I’m realizing to do so takes effort and pre-planning on MY part. Sometimes I need to go to bed earlier the night before. Sometimes it may mean I need to stay up later and pack lunches after putting them to bed. But often it means, this non-morning-body may need self-discipline getting up earlier…early enough to get ready AND to have an unhurried quiet time prior to waking them.

Essentially, I’m acknowledging that much of their attitude for the day lies with me: the thermostat mom. 

There is only 1 week of school left: YAHOO!!! I love summer.

And so this summer, I resolve to take my responsibility of being the thermostat seriously. I’m going to explore life with them; I’m going to laugh often; I’m going to build forts and roast s’mores and splash in the river and throw water balloons. I’m going to pray early in the morning and breathe in the truth of scripture. I’m going to get myself into a routine so that by the time September rolls around I’ll be prepared and in the groove.

Beginning now, I’m setting the temperature for my family.

A Little boy Humor

We love to read in our house. During Spring Break, we spent an afternoon in the most amazing bookstore I've ever been in...3 floors of books. And my kids begged to stay longer, and to go back the next day. Books! Books! Books! A home can never have too many books!

We have been reading the Little House on the Prairie series and are in the book “Farmer Boy”. If you've read it, you'll may recall where Almanzo’s parents leave the four children to run the farm for a week while they go ten miles away to Uncle Andrews farm for a vacation. 

The first thing the 4 siblings did was to make homemade ice cream and eat cake, followed by watermelon for dinner. Then Almanzo sneaked into the pasture with the colts where his father had forbidden him to go.

After our reading I asked my boys, “What would you do if mom & dad left you alone?”  They are so innocent at this age, I knew they’d ‘confess’ everything they would do!

Big brother over eagerly replies, “First, I’d go try on all your lipsticks.”

Me smiling, “Hmmm, what else would you do?” 

Big brother, “I’d play with all your pretty jewelery.”

Me, “Okay, little guy, what would you do first?”

Wise little brother smugly says, “I’d go quietly rock in my red chair, and I’d look at brother and tell him to stop doing all the sneaky things he is going to do.”

Me: Baaahaaahaaaa! Of course you would!

Being the Sibling

One recent evening, bedtime was a bit difficult, okay it was a major issue, for Little Brother. He went into one of his moods: dawdling, in his own world, stubborn, defiant, proud, disobedient. It had been a long week and I was frustrated and tired with husband out traveling for work all week.

Little Brother pushed my limits, so I reacted and I told him to get on his pajamas and get in bed. No books, no lotions. When I told him I still loved him even though I needed to give him a consequence I was mostly tired and angry.  As he lay with covers pulled up to his chin, body curled into a fetal position, eyes stubborn with unshed tears...well, I gazed at him, right into his eyes and my heart just broke for him.

My precious little boy: only 6 yet so strong willed. So resilient.  I scooped him up on my lap and hugged him tightly and gently rocked him.  With a quiet gentle voice I whispered, “Is it hard for you being his little brother?”

The dam of tears burst forth and his body shook as he whimpered “Oh yes, mommy!”

He’s only 6. Just six years of life, yet he’s had to bear so much: abandonment, neglect, orphanage, trauma, relocating to a foreign country, Celiac, and a big brother with FASD. Is it any wonder he is strong willed and defiant: it’s his only way to survive what life has thrown at him!

I told him how proud I am of him for being so kind and patient with brother; how I appreciated that he didn’t tease brother or make fun of brother; that he was so compassionate and loving; and that God had picked him as the most perfect brother that Big Brother could ever want. I told him he was such a gift to our family and to brother.

I’m not sure that my words impacted him as much as the tone of my voice, my holding him and rocking him did.

It was good for me to have these moments when something breaks through my weary every-day-mundane routine and I’m able to see beyond Little Brothers stubborn, stand-your-ground-defiant attitude.

I need the reminders that Little Brother is tender and only 6; that his attitude is his protection and defense; that my soft words, my communication and my touch will go much farther with him than a consequence ever will.

Hope

I love Spring. Yellow Daffodils, sweet purple Hyacinth, orange and red Tulips. New color and the promise of new life after long winter snows. And Easter. The reminder of the amazing truth - the uncrushable hope - that Jesus is alive! The knowledge that the cross was not the beginning nor was it the devastating end. 

Hope formed the tiny frame of a baby on earth in a stable in Bethlehem, it reached the depths of despair and darkness on a hill of Golgatha, but it burst forth in glorious joy on the morning Jesus resurrected from the tomb, and that hope continues as He is alive in heaven preparing a place for those who believe Him.

Easter causes me to reflect on many of the great hymns of the faith that I learned as a child. Hymns I want my children to know, to learn the words that bring faith, hymns that share hope.  We have this wonderful book called Passion Hymns for a Kids Heart.  We listen to 1 hymn on my iPad at breakfast and talk about it while we eat. It leads into all kinds of discussion.

I should tell you that my son with FASD has a passion for music: music fills his soul, it flows from his heart non-stop to the extent that if he is awake, he is singing or humming with every breath.  After listening to this hymn, my sweet boy began his two hundred and one-question inquiry. Which led me to breaking the song down into sections and explaining them to him.

On a hill far away....
son: where is Jerusalem mom? how far away, like to Grandmas?

Stood an old rugged cross...
son: I know this mom, its where Jesus was killed

The emblem of suffering and shame...
This took some careful explaining on my part but he's a boy so all that killing and blood stuff peaks his interest and I truthfully told him it was the horrible way that the mean soldiers in Rome would kill the Christians and the prisoner that they didn't like. That it was very painful and very embarrassing because they took all your clothes away and left a person naked before hurting them. (snickers on his part, yes he's all boy and the word "naked" sends him into gales of laughter!)

For twas on that old cross...
same cross from long ago

That the dearest and best...
that's Jesus, the Son of God, He is the one who is the best

For a world of lost sinners was slain...
thats everybody, even you and me.  Jesus loved us all that much.

So I'll cherish the Old Rugged Cross...
that means I'll think of it nicely and be thankful for what happened on the cross

Till my sufferings at last I lay down..
Son: what kind of sufferings mom?

Just here my voice broke..., and I could only speak in a whisper to him as my emotions overwhelmed me with what the Truth of the cross really means for him and every child like him with disabilities. I was supposed to be helping him understand when suddenly my heart was once again growing and learning new insights because of the special needs of this child. 

 

“Sufferings”, I explained, are all the sad things we have to go through in life. 
Like your fetal alcohol. 
It's something you'll always have here on earth. 
I wish it would go away but it won't. 
And friends who get sick, and people who get hurt, and earthquakes that happen...those are all "sufferings".

I will cling to the Old Rugged Cross....
In a whispered still voice I said to him, "Oh dear boy, the cross will always be your hope. That old cross where Jesus had to die, it is your hope, for today, for tomorrow, for everything"

And exchange it someday for a crown ....
My little angel on earth, you have to suffer with all the affects of fetal alcohol on this earth and its not your fault, and I can't fix it. 

But one day God has promised that you will take that Fetal Alcohol and you will throw it down and get rid of it. 

And God promises you that He will give you a crown in heaven. A big, beautiful crown, shiny-er and more sparkly than anything you ever seen. And you will get to wear that crown forever and ever and ever because you are Gods precious child and He loves you.

That my friends, is the hope found in Easter.

Jealousy, Resentment or Reality?

I want to establish this in your mind before I begin sharing: my husband is a generous man. Whether it’s a stranger or a family member, he will offer assistance when needed. Sometimes money; sometimes muscles.  And he's been known to bring home flowers on a Tuesday just because he loves me. I drive a car that keeps me & my kids safe in any weather. I've been showered with my fair share of bling.

Recently, as a gift, a girlfriends husband gave her a week away at a beach-house with her girlfriend.
At the beach.
With a girlfriend.
With no children.
For a week. All pre-arranged as a surprise for her.

I can hardly fathom the concept.
Jealousy rises ferociously in my heart.
Not because this friends husband set the bar so high, it’s simply that this is gift is so far out of my reach, there is no use longing for it.
But I do.   I long for it to the point of silent tears flowing across my cheek.
Its something I’ve wished for, hoped for, for quite some time.  Eons before her husband handed her this gift, my heart had craved time alone at the beach.
Yet, maybe I'm not so jealous as I am a bit angry and resentful.

The fact is, I have a little boy with a list of medical and neurological disabilities, and I’m not sure my family would survive if I were gone more than 36 hours.
I don't know what it's like to go away - - to leave and actually leave my responsibilities behind.
My sons disability is my life.
He is dependent on me in ways that go beyond the Webster defined meaning of codependency and attachment.
Oh, I have tried to remove myself for a couple days: I've gone to a women's retreat for a weekend and left my son. Something always goes terribly wrong. And the reaction it causes in my son continues for days, sometimes weeks, after I return.

My generous, wonderful husband and I have been planning on going to Greece to celebrate our milestone anniversary. We've planned and saved, bought guidebooks & maps, pinned ideas and hoped with anticipation.
The reality is setting in: I left dear son for two nights with hubby a few months past and all hell broke loose with our dearly loved & trusted respite care provider. It was no fault of hers. It was all the little guys doing.
I left for 1 night last month and the backlash was horrendous at home and at school.
If I can’t leave my city, how can we possibly go to Greece???

This is a struggle for me.

 This is a part of motherhood not mentioned in scripture or parenting books.
This goes beyond the normal motherhood lack-of-sleep, tired, always putting-yourself-last-for-the-sake-of-your-children syndrome.
Raising a child with special needs requires far more.
And to be honest, there are days when I just don't have it in my selfish human nature.

Do I want to get away by myself for an entire week of writing, meditating, reading? Oh my! Absolutely! I can't even fathom the idea.

Do I want to be with my husband  on an island in Greece with zero (0) children, no phones and no work?
Yes! A thousand times yes!

The reality is this: it’s not my season in life. And the harsher truth is this: it may NEVER be my season in life, where my son is concerned.

I wrestle with my selfish sinful heart daily. Ok, let's be honest...  if I don't spend time with God on a regular basis, I'm not worth anything to my family who so desperately needs me.

My child needs me in ways that my friends family will never depend on her.  He needs me in ways that I will never, ever be able to communicate to my girlfriends. 

For now, for this day, for this moment… holding my sons small hand and guiding him through life is my calling. And if I look into his eyes and remember that his life is a gift to me, that he is an eternal soul who needs my love and wisdom, who desperately needs me to be his external brain… then the jealousy will melt away like the snow falling out my window.

Still, I'm not giving up all hope that one day the white sand and blue oceans of Greece may be mine.

A Mothers Theology

I love driving my youngest anywhere because he sits in his car seat and sings songs he has made up. He sings about whatever is on his mind, creating his own little melodies, singing usually off key, but oh so content.  The songs are always from his heart so I’ve learned to just listen quietly without correcting or commenting until he is finished.

On a dreary still-winter, not-quite-spring morning as we drove to school his musical composition began with the long sad walk down the Via Dolorosa, how the mean people put Jesus on a cross and stuck him with a spear, how a lady named Mary came to see him (pause, right mom, her name was Mary?), how the angel Gabrielle came and said don’t be sad the Holy Spirit took him away, then Gabrielle (that's not a typo - - he INSISTS the angel is a girl!) left and went to another Mary and told her to name her baby Jesus but they went to the town and everyone was closed so they found that place with hay and made a bed for her baby, then Joseph went to Egypt where the Pharaoh was mean and made the people slaves but the momma put the baby in the basket and the princess saved him and he grew up and went and saw the bush on fire and God said “TAKE OFF YOUR SHOES, THIS IS HOLY GROUND” so he did and he heard God say I AM. So he took off his shoes and went and saved the people and they came to the sea and Moses put out his hand and the sea opened and the people went across but the chariots drowned but the people complained. And God was mad. And the  people complained again and its so sad.

And…. then we pulled into the school parking lot and I had to interrupt him. Granted, his chronology was quite out of sync, but his knowledge was right on track.  Before we said our morning drop-off prayer, I made a point of telling him how proud I was of him singing from his heart what he knows about Jesus, and I prayed for him to share his love of Jesus with his friends so they could have Jesus live in their heart someday.

All the while he sang his composition, my heart rejoiced that he is singing about Jesus.

Now remember, all of this took place in the course of 10 minutes. 

As I dropped them at school, in the solitude of the car, the Holy Spirit quietly encouraged me with these thoughts:  my children are listening, my children are learning, my children pick up their theology from me. Their theology is whatever I live for them. Be encouraged as a mom: the years of reading Bible adventures, of repeating Catechism with them, of memorizing Scripture, of praying for them….it is not in vain. 

Do not fret over new diagnosis from doctors, do not grow weary over hours spent in therapist offices. Do not grow tired over the never ending pile of laundry and the dirty floors. Keep on training even when it appears that all they do is fight and whine and need attention. No, they have not kneeled down by their bed and asked Jesus into their heart, but they are soaking up my theology daily. I am laying a foundation for them that all the gates of hell cannot shake.  Do not be discouraged dear mother, take hope and peace in the power of the Holy Spirit to move in their hearts, even at this young age.

He knows the way

This journey on the unknown highway of FASD has been an unplanned adventure: it wasn’t written on my heart or in my journals.

I simply do not understand FASD.

This Spectrum Disability encompasses so many variables it is mind boggling.  While there is much information on what FASD is, how to prevent FASD, statistics scary enough to chill the heart of every parent... there really isn't much at all written along the lines of hope for a parent of a child with FASD.

Truth is a parent is always a parent, no matter what age their child has matured to. A parent always looks at their child as their child.  For parents who are raising children with FASD the truth goes even deeper: odds are very high that our FASD child will remain somewhat child like their entire life, not figuratively in a mothers heart, but literally so.

Leading child “experts” such as Michael Thompson, James Dobson, Kevin Leman, Gary Ezzo -- not one has written a guide for the parent of a child with FASD. Search Amazon and find 191 topics on raising boys, but not one of them reaches the parent of a child with FASD.

Our children with these Spectrum Disorders do not fit the mold. Any mold. They are unique like no other.

One day they love on you as if you hung the moon; the next day they accuse you of child abuse. They joyfully comply with the boundaries you have set in the morning, only to have a raging unexplainable screaming melt-down over the very same rule in the evening. They adore and love their siblings, then an hour later blindside them across the back with a giant stick. Whatever I did yesterday that kept them calm, even keeled and healthy...today is sending them into a frenzy.

I am not on a quest for Nirvana yet I have learned about Qigong, castor oil, flower essence and other Eastern medicinal treatments you may not even know existed.  I have charted our eating habits meticulously. I have eliminated all things processed, genetically modified and unnatural.  I have tracked the phases of the moon closer than my own monthly cycle.  I check the barometric pressure and weather forecast every night before bed.

There is no limit to my self education when it comes to my child's well being and training. I will do whatever I can humanly do as his mother to give my child opportunity to reach his full potential.  Yet, that is my great unknown: what is his full potential?  That not knowing if he will mentally even mature to age 16 is something that can worry me to death. Literally if I allow it.

And so I rest my passion, which is at times all consuming and utterly draining, I take my fears of the unknown,  the frightening FASD statistics that tear at my soul and I lay them at the feet of throne of God, and with all my heart I cry out for wisdom.  With tears flowing I remind God that He promised in Job 23 that even when I am confused and when God does not appear to be near -- yes, He does know the way that my child will take. And my soul finds rest in this hope: the journey is His, not mine.

Slowly I peel my clinched whitened fingers off the soul my child.  I do this often, if not daily. It is not a one time release, for I habitually take back what I have given. So continually I am learning, this place of finding rest is one where I must return to.  My soul will only keep this rest as I trust in the promise: He knows the way that my son will take.

I Don't Ask For These Days

I read in James in the morning “if any of you lack wisdom let him ask of God who gives generously and without reproach…”

I prayed for wisdom in the morning.
I prayed that I would be generous and without reproach toward my son today.

I didn’t know in the early morning quiet how desperately I would need that prayer by the afternoon.

It’s raining again today. All day.  A wet, cold, slushy miserable rain; my sons body cannot handle a change in barometric pressure.  The more miserable and penetrating the rain, the more miserable my son seems to be.  Today was such a day for him at school.  Such an afternoon at home.

He is in the quiet room, working on writing…and not at all quietly. 
His face is red and blotchy and tear-stained. His nose dripping faster than the tears. 
He is telling himself angrily “I can’t do it” and repeating “what? what? what?.  I can’t write”.

At school he refused to go to reading group and refused to write.
I have him writing sentences while I clean the floors and now sit to journal my prayers.

I have held him quietly.
I have prayed with him.
I have rocked him.
Now he must face his consequence: refusing to work at school means missing out on play time at home and finishing the school work, plus writing more sentences.  Correctly. Not angry and sloppy.

I know he can do it. I know is able.
His first sentences are perfect and prove his ability. He thinks his consequence is done with two sentences.
I tell him he has two more to write. His next sentences show his anger.

It has been over 45 minutes of him sobbing and crying.
I hold him again to calm him. I leave him to write.
I sit in my office. My own heart is sobbing, my face is tear stained as well.
I sit. Praying. Crying. Journaling.
At times like these it is all I can do to cling to scripture.

Snowflakes

Its been a while since I posted, but if you are reading this, you are most likely in some manner connected to a person who has special needs...so I don't really need to take your time explaining. You already get it. Life happens. And the best of intentions get set aside to face the demands of each day.

Winter 2012 has finally arrived and quite honestly I could not be happier. I love the snow in January! As I drove home from dropping kids off at school I savored the quiet in the car - no kids, no radio - just me talking to God and watching the snow fall. The cold flakes leaving beautiful patterns on my windshield,  I thought how each child is like a snowflake.

No two are alike. Each snowflake is incredibly intricately different, yet no snowflake is overlooked or discarded just because it is not the same as the other snowflake.

My child is often a snowflake:  pure, innocent and beautiful.

Sometimes like a snowflake, he too is icy and cold.

Sometimes like a snowflake as it lands and quietly melts away, he is held in my hand only to disappear before my eyes, but in that brief moment I see joy glistening and sparkling.

The snowflakes also remind me of Gods love falling on our lives, covering the dirt, the sin, the ugliness of my heart. And in its place God provides cleansing, beauty and restoration. 

My children, like each snowflake are a unique gift from God, given for me to treasure and enjoy for a brief moment. I know all too soon the sun will burst forth casting radiant beams to melt each tiny flake. So I breathe deeply, inhaling the cold air, feeling the icy tingle on my uplifted face and I thank God for the precious life he has entrusted to my care.