A Capital Letter Syndrome Doesn’t Make a Child Less Than

Marching to the beat of his own drum.

I knew.  I knew from early on that my son marched to the beat of his own drum.  I tried to to make him march with the other kids.  I didn’t want him to think something was wrong with him.  I tried all the parenting advice and discipline techniques.  Nothing seemed to matter.  I was trying to force a square peg into a round hole.

A Capital Letter Syndrome Doesn't Make a Child Less Than

The school nightmare

School was a nightmare.  He’d burn up all his energy on trying to “be good” only to fail and fall short of the teacher’s expectations.  He never brought home that coveted green smiley on his behavioral chart that said it was a good day.  I could see it in his eyes, he felt less than.  Less than the other kids his age, less than good, less than what people want.  It broke my heart.  I hated that stinking behavioral chart.  I hated that people refused to try and understand my sweet boy.

Soon we realized that traditional public school made things worse.  When he was in third grade, my husband and I made the choice to homeschool all our children.  I will never forget the day early in our journey that he leaned against my shoulder and said “Thank you for homeschooling me, Mommy.  I felt so stupid in school”  I cried that day and still remember it so vividly.  I replay that memory when we’re having a rough day.

Being your Child’s Advocate

I knew that I was going to have to be my son’s biggest advocate.  From the time we got his SPD diagnosis in first grade until just recently, I’ve had to explain everything it means and what it doesn’t.  I’ve had to undo society’s idea of what perfect children should look like.  My son was perfect.  Exactly the way God made him.  Just because he doesn’t do everything like the masses doesn’t make him somehow less than.  I am actually proud that he doesn’t.  And now, even at 14 years old, I will still fight anyone that tries to force that square peg into that round hole….or lovingly point out how mistaken they are.  It’s a toss-up, really.  😉

Want to hear more of what Lori has to say on the subject? Listen to this week’s podcast episode:

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Lori Shaffer

Special Needs (Capital Letter Syndromes) and Homeschooling Director

Lori Shaffer is married to her childhood best friend, Jacob.  She is a stay at home missionary and homeschool mom to their three children.  She is passionate about advocating for teen moms and women and children that have been abused and giving them hope and encouragement.  Most days she can be found drinking coffee, working out with Kathleen, or hanging out with her family.

Follow Lori on Social Media:

Facebook- Lori Shaffer

Instagram –@browneyedmomof3

Instagram joint fitness account (Kathleen and Lori)-

@2girlsnotrunning

Should You Attend the Empowered to Connect Conference?

Remember that old commercial, “Silly Rabbit, Trix are for kids!” That rabbit never gives up, he keeps trying to capture his share of the sugary cereal.

That’s the same scenario that plays out when people see the banner, post or tweet about the Show Hope’s Empowered to Connect Conference (April 8th and 9th) They think, “Silly me, that conference is for foster and adoptive parents!” It’s not just for for adoptive/foster families. It may be for you:

 

If you counsel  families and children….

 

If you are a teacher…

If you are a judge….

If you are a psychologist, teacher, therapist, have a special needs child, have a specialization in child development, work with children on the spectrum or work with children on a daily basis, this conference is for YOU.

If you are scratching your head, wondering what T.B.R.I. (Trust Based Relational Intervention), watch this intro video and share!

If you are interested in attending the Show Hope Empowered to Connect Simulcast and you live in the Fairmont, Clarksburg, Bridgeport, Morgantown (WV) area, you can find more info here. If you would like to attend and live elsewhere, click here to find a location near you. Hope to see you April 8th and 9th at the Empowered to Connect Conference!

*For CEUS, make sure you register here. This is a separate registration than regular attendance and MUST be done online.

Repetition, Repetition, Repetition

Jabberwocky

BY LEWIS CARROLL

’Twas brillig, and the slithy toves
      Did gyre and gimble in the wabe:
All mimsy were the borogoves,
      And the mome raths outgrabe.
“Beware the Jabberwock, my son!
      The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
      The frumious Bandersnatch!”

Source: The Random House Book of Poetry for Children (1983)

I love this nonsense poem. It’s a fun poem to memorize because it sounds like nonsense when you begin reciting it and then it makes perfect sense when you have it down pat.

When some of my children were working on memorizing this, we watched YouTube videos for pronunciation and then read along with them until we got the hang of the correct pronunciation. As Audrey said yesterday, the physical laws of the universe are like this nonsense poem to children who have neurological development issues caused by neglect, FAS (Fetal Alcohol Syndrome) and are on the autism spectrum. I call these capital letter syndromes. Many children from hard places have them. The laws of nature are nonsense to them. In order to learn the laws in their proper form, the must have repeated experiences with them. Over and over and over.

A common misconception of these children is that they are in control of the laws. They can decide what they can and cannot do and because of this faulty thinking, a child will think he can ride a bike perfectly the first time he gets on it because he wills it to be so. He thinks the same about any outdoor endeavor: climbing trees, rollerblading, swimming, etc. If he attempts these things and falls the first couple seconds, he may erupt in a violent outburst and determine that he will never do ________ (fill in the blank) because he is not good at.

walk-bike-lane-signs-bicycle-walking-painted-asphalt-45751176

The first few times I saw this type of behavior in my kiddos, I was baffled. Some kids threw skates, bikes, stormed out of pools, kicked trees, and I scratched my head. Then I remembered: control. Hurt children want to control everything and they think they do. In that sense the world is static. They want to rollerblade and they think they can because they will it to be. When he puts on those roller blades for the first time and falls, he assumes there is no changing it. That is just the way it is. There is no way he has the power to change it or otherwise he would have already. This sort of thinking seems irrational to the healthy child who knows there are laws of nature and that learning a new thing has a steep curve. The healthy child has been practicing new things his entire life. He makes progress in areas of physical and mental development. The hurt child is stuck.

So what do you do? Audrey gave some great suggestions in yesterday’s post. I would add  the answer to that old joke my brother loved pester people with when we were kids:

Pete and Repeat were in a boat. Pete fell out. Who was left?

Pete and Repeat were in a boat. Pete fell out. Who was left?

Repetition is the key to children from hard places learning the laws of nature. Each of these kids has to start at the beginning, even if it means working on smaller tasks of balance, floating and sinking, gravity experiments when their peers have those concepts down pat. In this area, assume nothing. Don’t think your eight year old knows that the solid form of water is ice. Don’t assume anything. Be willing to work out little experiments to show them.

When the child wants to give up after one try on roller blades, strap some on yourself, put up some orange cones and skate around in circles with him, encouraging him (firmly) and patiently to try it again. And again. I spent the warmer seasons of a year getting one of my kids around those cones on rollerblades (my leg muscles were awesome that year). There were tears, fits, objects were thrown (and it wasn’t me that time) and finally there was VICTORY. Cheers. Smiles. And that kid now whizzes past me at the skating rink.

Delayed or compromised neurological function is paired with developmental delays. A child who was kept in a crib for most of his toddlerhood will need years to catch up, not just months. These kids need the same sort of repetition their peers got at an early age. They need to fall and get up (at whatever age they are now) as many or more times as they would have as a toddler. These kids need to feel grass and rocks under their bare feet to know the difference. They need to climb and fall. Wreck a bike. And as we watch these repeated practices, we cheer them on. We encourage and firmly expect that they try again. Then we rejoice with them.

“And hast thou slain the Jabberwock?
      Come to my arms, my beamish boy!
O frabjous day! Callooh! Callay!”
      He chortled in his joy.
Linking up with Kristin Hill Taylor! Join us! Click on the widget below:
TWWbutton200x200_zps62610d74On another note: I will be speaking at the CHEWV celebration this Saturday, May 16. Hope to see you there!  You can find out more HERE.

FAS Treatment Part V, Parenting with Schedule

Parenting with Schedule
* This the final post in a series on FAS treatment.
If you are just joining me, you may want go back and read through the series.
Years, ago, when I took Rafal to a children’s Hospital for an initial appointment prior to a cleft-palate repair, I was confronted by a nurse after she learned that Rafal was adopted from Poland.  As I held this nineteen month, nonverbal baby on my lap she demanded, “How do you understand him?”
“He doesn’t talk much because of the cleft-palate.”
“Do his brothers and sister interpret for him?”
“No, he doesn’t speak.”
“How do you know when to feed him?  How do you know if he is hungry?”
“Well, when he wakes in the morning, I feed him breakfast.  When it is lunch time, I feed him lunch.”
This verbal berating went on for about fifteen minutes.  When I assured her that I followed a schedule and he was getting proper sleep and nutrients, she was still stuck on the language issue.  Actually, she was stuck in the child-centered family thinking.  In other words, if this baby couldn’t tell me when he wanted a teddy graham then something was wrong with my parenting.  The truth was that my keeping him on a schedule was helping to alleviate his fear and build the connection that he needed with me.  I was being proactive and providing for him before he had to ask.  
FAS children don’t just need a schedule for sleeping and eating, they need a place to do those things.  For instance, if an FAS child sits at the dining room table for dinner, he may be upset if he has to sit at the kitchen table one night.  I just upset things a little for Rafal because he usually eats breakfast in the kitchen at the counter.  I just gave all of our stools to Amerey when she moved into her apartment, promising the family I would shop for some new ones later in the summer when we have some extra money.  Thankfully, our summer habit is to sit on the deck outside when the weather is nice and eat.
What kind of schedule are we talking about here?  It doesn’t have to be military style, but it does have to be consistent.  FAS kids have difficulty with the concept of time.  A schedule or list of events for the day helps them to know what’s coming next and helps them feel more secure about it.  During the school year, I have a schedule posted for the school day, including each subject and lunch.  I also write things on the white board in the dining room.  Some people laugh at me for having a huge white board in a main living area.  It is a powerful tool!  When  I write something on the board such as ‘vacuum your room’ or ‘read for half an hour’ it does two things: it removes my telling them and it puts it in writing so the kids can keep checking it if they forget.  It is important that an inanimate object is giving instruction to an FAS child because the child cannot be angry with a white board for long.  My kids know that if I want them to do something that I write it on the board.  If one of them comes and asks me, then I just say, “it’s on the board.”  Also, FAS kids cannot remember two step instructions such as ‘make your bed and get dressed.”  With the white board system, the child can check fifty times and the board doesn’t get frustrated with them for forgetting.  When Rafal gets off task during the school day, instead of telling him what’s next, I walk to the board with him or the paper schedule and have him check what needs to be done. (The school schedule I use comes from Managers of their Homes by Teri Maxwell).
There is no magic cure for FAS, but these three things: nutrition, activity and schedule, help to alleviate many of the symptoms.  An FAS child will crave sugar just as an alcoholic craves a drink.  It is not in the best interest of the child to feed him a diet of junk food.  Simple carbs just turn to sugar in the body.  Outdoor exercise relieves anxiety and depression.  It gives kids a good tired feeling not the pseudo tired that computer games and tv give.  Structure helps these kids feel as if there is some control and order in their lives.  Fear of the unknown is the greatest fear.  A simple white board can make things known and offer that security.  






FAS Treatment Part IV


  1. FAS Treatment Part IV
    * This is part IV in a series on treatment for FAS. This is part of an article I wrote years many years ago! Thanks for joining me!

    3.Structure.
On holiday vacations, my sister-in-law,Kris and I sit in the family room with our latest reading books in the early morning, she with her milk and cereal, I with my coffee and cream.  We read for awhile and lapse into conversations about life, schedule, etc, until slowly, one by one the children enter sleepy-eyed, asking questions about the day’s events.  Kris will say to me, “Kath, what should we have for breakfast?”  Then we both kick it into high gear and make home-made French toast, waffles, or pancakes or if we are really lucky, we get my brother Robert to make his famous omelets.  Kris and I joke that by the time we get breakfast cleaned up that it will be time for lunch, but this is our vacation mode.  The kids and adults take full advantage of this time. There are more movies watched, video games played, bowling, outdoor hikes and football games.  The fun seems to never stop until one of the kids has an emotional breakdown due to exhaustion and too much sugar.  Fortunately, we don’t live in vacation mode; it’s not healthy for extended periods of time and it’s not helpful for FAS children.
Imagine, while in vacation mode, sitting on the comfy sectional, eating buttery popcorn and watching an action adventure movie that leaves you hanging onto your seat for dear life until the final credits roll.  This is how an FAS child feels about life with no structure.  He feels out of control, one cliff-hanging, mind wrenching scene after another. An FAS child, like so many other capital letter syndromes just need to know what is coming next, he craves predictability, it makes him feel as if he has some control.

“Without a parent-leader, these children learn to rely on themselves.  They learn nothing about reciprocity, cause and effect thinking, being directed constructively.  And they learn nothing about being nurtured.
As a result, these children need even more of a parent centered family than a child who has not experienced trauma.”   Parenting the Hurt Child

A child-centered family is disaster for an FAS child.  The family will spiral out of control until the environment explodes in an angry black hole.  The child will run the home like a small terrorist setting off bombs at will.  When parents leave everything up to the child- when he wants to eat, when he wants to go to bed, if he wants to do his homework, what he wants to wear (even if it is shorts in the middle of winter), then the child becomes more and more angry because he doesn’t have the wisdom to know what’s best for him and the parents just scratch their heads trying to figure out what is wrong, because they always gave the child what he wanted.  

Next time- Parenting with Schedule.