Friday, May 25, 2012

Discipline in Our Family

As I lay in bed last night thinking about what I might write about today, my heart was very heavy. Disciplining the kids yesterday probably took at least three years off our lives and added another scratch to our marriage...hey, marriage with an Aspie could be another topic too!  I'll call it "Scratched vs. scars!"

Someday too I will post about the most common coexisting conditions kids  with Asperger's often have, but for today I'll tel you about the ones we deal with.  It's really hard to tell whether these "other diagnoses" are really separate or if the behaviors are just part of having Aspergers.  For example, one of Caleb's other behaviors is severe mood swings.  His doctor said they mimic Bipolar.  So does he have Asperger's and Bipolar? Or, are the mood swings caused by his inability to make sense of the world which is inate to Asperger's?  We know another family with an Aspie who is rarely moody.  Go figure?

Caleb's other "diagnoses" or behaviors include: ADHD (to the max!!), Anxiety Disorder, Mood Disorder, ODD (Oppositional Defiant Disorder), Sensory Processing Disorder and maybe even Bipolar!  So, he's inatentive,has little or no impulse control, forgetful, hyper,anxious, moody, defiant, does not respond to correction or discipline, hyper sensitive to sound, touch and commotion, and either giddy or depressed.   And that's on top of having a hard time interpreting social cues and people in general! 

To make matters worse, he has a brother with ADHD who loves to act goofy and a sister with ADD who loves to sing.  Their nicknames are often trigger!  They know that if they trigger a tantrum or meltdown (Hey, there's a topic for another day too!), then they have to pay the price with him. But, because they are both also inatentive and have a hard time controlling their impulses, they often don't realize that they are triggers!

So, how in the world are we supposed to discipline a child like that?

Getting back to my heavy heart from last night...

Caleb is lots MORE of everything in the above lists if he is tired or doesn't have good food in his diet.  The past 3 nights he has slept in his tent and gotten up at the crack of dawn.  His impulse controll is BAD anyway, but we are trying to take him off of his ADHD meds for the summer, so it is worse than usual, (He snuck and drank 10 Capri Suns two afternoons ago!) AND his wonderful, loving, but somewhat impulsive himself, grandpa bought him a 5 lb. bag of candy yesterday! We had the ingredients for a PERFECT STORM!  And storm it did! 

Another thing that made yesterday complicated yesterday is Caleb's inability to be flexible.  He overheard me jokingly tell one of my friends that "if I let the kids sleep in their tents all summer, at least we won't have beds to make!"  His brain's interpretation is "I GET to sleep in my tent 'till August!"  The other two kids heard it too but know the difference between literal speech and joking around.  So, yesterday when I announced that EVERYONE would be sleeping in their own beds to get a good night's rest (and so that they won't wake me up during the 5 or 6 O'clock hour) Caleb assumed that it didn't mean him.  I repeated it numerous times yesterday to let it start sinking in.  Unfortunately, when Caleb hears something, it is GOSPEL TRUTH until "Death do us part!"

(A "Death do us part" example, and these happen often around here, was the other day when our power went off for a few hours in the morning.  I told the kids "Well, at least you don't have to do math for a while!  We'll play multiplication bingo if it doesn't come back on."  Yopu wanna guess what parts of that statement Caleb heard!  Oh yes, later that morning when the power came back on, he screamed at me over and over, "BUT  YOU SAID WE DON"T HAVE TO DO MATH!!!!  YOU SAID WE WOULD ONLY DO GAMES!!!!!!!!!!"  The other two kids eventually did math, but not Caleb; we played multiplication bingo.)

Near bedtime last night I had the kids bring all of their bedding back into the house, reminding them once again that we were going to ALL get a good night's sleep.  Caleb's response, "Not Me!  I'm sleeping out here!"  He zipped himself in his tent and put a lock on the zipper.  Seriously, does he have to be soooo stubborn?  Is this Asperger's, ODD, or just plain being a nasty 13 year old?  What do we do?  If we drag him out then we will have a full scale 3 alarm meltdown that could take up to an hour or more to extinguish.  But if we leave him, he has learned to get his way.

Luckilly for me, Dad took over.  I looked out the window to see Cory having a counseling session with him in the back yard.  Caleb in the tent and Cory sitting in the grass.  After 10 minutes of waiting for them to come join our Thursday Night Family night...what we do in the summer after youth at church is over for the year...I went out to "help" get them moving.  Now, I'll be honest here, PMS and Asperger's don't mix!  It's worse than oil and water...they actualy repell each other like same poled magnets!

I reminded Cory that if he "didn't come out in a few minutes, then the tent needs to come down!"  Logical punnishment, right?  My tone, by that time of night wasn't very logical, however, it probably was more exasperated.  I heard Caleb yelling as I turned to go back inside and Cory saying, "Thanks, we were just getting somewhere!"

Miraculously, in just a few minutes, they were both in and Caleb was congenial and sat at the table quite politely.  Usually he sulks after a confrontation! We had quite a peaceful family night, started a new book on Illustrating the Proverbs, and all was well until I figured out that Cory "caved" and had promised him that if he could be good through family night then he could stay in the tent.  I was so mad that I would have to explain to the other two kids that they were sleeping in the house after they obeyed and Caleb was sleeping in the tent anyway! 

I put the words "caved" in quotes because he didn't actually cave in!  We had failed to communicate that evening just what my expectations were for the night.  The kids knew, and yes, Caleb was being defiant, but Cory didn't know.  He found out after I kind of lost it with him.  When he innocently asked me what the problem was, I told a voice that only PMS and "Asperger Battle Fatigue" could bring out.

So, another counseling session in the barn and tent for the next half hour and miracle of miracles; Caleb slept INSIDE!  AND HE EVEN SLEPT IN TILL ALMOST 9 THIS MORNING!

The lessons to be learned...

NEVER tell an Aspie something jokingly (or let him overhear it when you talk to other people!) because it will come back to bite you!

NEVER fail to tell your spouse EXACTLY what you said to your Aspie.

NEVER let well meaning grandparents give your kid 5 lb bags of candy!

ALWAYS hide the Capri Suns and any other sugar containing beverages or snacks!

Always remind yourself that God must have a reason for giving your children to you the way he does for a reason, so you should probably let them live to see what God wants to do with them!

"For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago."

I'm too tired to proofread today...hope there are not too many typos!  :O)

Thursday, May 24, 2012

So, What is Asperger's Anyway?

I'm sure many, if not most of you have heard of Hans Christian Anderson, right?
You know, he is famous for writing fairy tales.  But unless you have a kiddo with Asperger Syndrome, I bet you have never heard of Hans Asperger.

He Just looks like a doctor, hu?

Asperger was anAaustrian pediatrician who started noticing patterns of behavior in some of his patients.   Some of the unique behaviors he noticed were a lack of nonverbal communication skills, limited empathy for peers, and being physically clumsy.  Much of Asperger's work went unnoticed, however, due to the fact that he made these discoveries during WWII.  I believe that many of his papers were destroyed.  His work was sort of "re-discovered" in the 1980's.

The modern definition of an Aspie, as I so lovingly like to refer to these kiddos (and adults) was not finalized until 1994!  It is still being debated today as a legitimate diagnosis, separate from autism.  

It is considered a spectrum disorder because there are a range of disorders under the autism umbrella.  It is also a spectrum disorder because each child or person with Aspergers will have certain behaviors to a certain degree of severity.  Some kids obviously have communication limitations but may not be so sensory sensitive, while others may have less struggles with communication and nearly always be on sensory overload. (That's where my Aspie kind of falls.)  Not all Aspie's have EVERY characteristic to such a degree that it is noticeable to anyone without a trained eye.  

Aspergers is diagnosed using a checklist found in the DSM - IV.
It's kind of like a playbook for diagnosing mental disorders. Click the following link to see the DSM - IV Asperger's checklist.  

One of the many reasons Asperger's is so hard to diagnose is because it is a spectrum disorder.  Diagnosis is based on a checklist of behaviors that are rather subjective rather than on a blood test or MRI.  You can't really see Asperger's.  Then again there is some really cool research indicating the actual structural differences of an Aspie's Brain. (This link is VERY scholarly, I didn't even read it all.  You would have to be a neurologist to understand it all!  But it is also VERY interesting!)  My Aspie's brain is probably Green with purple polka dots!  

This pic is from the very scholarly article.  It shows areas of the brain where Asipes have more brain matter and areas where they have less.   Because of these congested and vacant areas, communication within the brain gets garbled up like a traffic jam! Imagine your body is trying to tell you to have a certain emotion but your brain can't firgure out which one in a reasonable manner of time.  

(This type of processing can be especially problematic at funerals!  Caleb was 8 or 9 when my grandpa died.  He loved my grandpa, but thought the funeral was "Boring!"  He didn't have the skills to know what emotion to feel so he acted out and I had to carry him out of the funeral because others complained that he "should know how to behave like the rest of the kids"  I cried as I carried him out, but I missed grandpa too and since it's ok to cry at funerals no one questioned my behaviors.)

I like to tell my Aspie that he just probably has "More Brains" than the rest of us so sometimes there are traffic jams in there when his brain tries to sort out emotional and social stuff!  He LOVES being told that he has more brains!


Fig. 3 Relative deficits clusters (blue) and excesses clusters (red) in white matter volume in people with Asperger’s syndrome compared with controls. The maps are orientated with the right side of the brain shown on the left side of each panel. The z coordinate for each axial slice in the standard space of Talairach and Tournoux is given in millimetres. 

Speaking of more brains...some Aspies have amazing academic and memorizing abilities.  We have an Aspie friend whose math abilities are AMAZING!    Maybe I can do a post someday on these abilities.  

Aspies also often have very strong preoccupations in one area of study or interest.  My son LOVES meteorology!  We are visiting a local TV station next month so he can hang out with the meteorologist and we all get to stay and watch the evening news!  We are all pretty pumped!  That will probably be our first "school day" of the 2012 - 13 school year!  I love Homescholing! 

Is it any wonder that Aspies, who often have a normal to high IQ, struggle in a school setting?!  Ya, we'll talk about that later!  :O)

I hope you have learned something new about Aspergers!  I know this post doesn't cover nearly  everything, though, so if you have any questions, please leave a comment and I can address it in another post!   As always, Thanks for reading!

Wednesday, May 23, 2012

Heartfelt Homesching: While eating out with a group of homeschool moms l...

Heartfelt Homesching: While eating out with a group of homeschool moms l...: While eating out with a group of homeschool moms last night to celebrate the end of another school year, I was reminded that there was actua...
While eating out with a group of homeschool moms last night to celebrate the end of another school year, I was reminded that there was actually a time when we didn't even know the word Asperger Syndrome or its meaning.  There was a time when dyslexia or ADHD hadn't touched our lives yet.  There was a time when we didn't consider ourselves anything but a typical family.  One of the moms said to me last night when I referred to our oldest son as having Asperger's, "Wait, I thought you said he had autism."  Well, he does and he doesn't.  He's no Rainman, although he can come pretty close at times! But now that we have lived with the word and its affects on our family we wonder what it was like to not know what Asperger's is or how it plays out in family relationships.

I will always remember the night when I read the word "Asperger Syndrome" for the first time. I was trained as a public school teacher and I hadn't even heard of it before that night. We had been told by a teacher that Caleb's  behaviors were becoming more and more peculiar looking and that we should probably start searching for a diagnosis for behaviors that "looked neurological" and were probably more than ADHD.  We immediately began to search for answers. While we were waiting for doctor appointments, which can have up to year long waiting lists for these type of appointments, I came across a book from our local public library, called "The Mislabeled Child," by Brock and Feradette Eide.  That book changed my life!  As I leafed though the book I realized that there were many names for many of Caleb's behaviors.  Could it be that we were not inept parents after all?! I stayed up 'till midnight reading that night after I came across the words Sensory Processing Disorder and Asperger Syndrome.  You would have thought the Eide's had come to our home and wrote about Caleb!  I even made my husband wake up and listen to me read!  I just knew that when we finally saw the pediatrician, she would confirm my diagnosis! 

The Mislabeled Child: How Understanding Your Child's Unique Learning Style Can Open the Door to Success

A confirmation was not to be had for many months, however.  We were heartbroken when that first pediatrician told us that there was nothing different about Caleb that good parenting couldn't correct!  She told us that we needed parenting classes.  We were devastated!  We have since learned that children with disabilities whose diagnosis is based on behavior checklists rather than disabilities that are diagnosed by a blood test or other reliable detection method, often spend years searching for the correct diagnosis.  You can't "see" Asperger's like you can Down Syndrome.  The school system we used to attend also told us that Caleb is not on the Autism spectrum and could not be treated as such. (I'll talk about school another day too.)

Caleb was not a behavior problem at school but as one teacher put it, "Caleb often goes to Caleb Land...but he always comes back."  His behaviors at home, however, were far from not being problematic. He was still having temper tantrums, meltdowns, sensory issues and emotional outbursts, all of which we took the blame for by wondering why he or we couldn't control his behaviors.  As with many parents of children who look "normal" but have behavior or neurological problems, we thought we were bad parents at times.  Much of this guilt was caused by all the well intentioned advice we were so often given that would guarantee positive results. (Well intentioned advice may just have to be the topic of another blog another day!) We were more than willing to look into why Caleb acted the way he did. We were more than willing to hope it wasn't our fault.

Some parents balk at the idea of a diagnosis for their child because it is embarrassing or somehow takes away the "normal" they have always hoped for.  Not us!  We were so relieved when a doctor finally told us that we were not bad parents, but in fact, exceptional parents to be able to handle the ups and downs of having a child who neurologically has little emotional or behavioral control. The day finally came when our wonderful neuropsychologist confirmed our suspicians when he simply said, "Can I spend more time with Caleb?  I am seeing such patterns here."   I cried that day!

What are those patterns? How do kiddos like Caleb process the world?  Stay tuned to find out! I'm planning the next entry to be a list of my favorite books and resources, then moving on to the basics Asperger Syndrome. 

Tuesday, May 22, 2012

Summer is Here!

I'm so excited that summer came Early This Year!  And, after virtually no winter in Indiana we are feeling very spoiled!  This is my first attempt at creating a blog for parents of kiddos with unique learning needs and styles! We are a homeschool family, but all parents of unique kiddos are welcome to come on board with me to learn and share together. I am so excited to share tips that work for our family and hear what you do to help your unique learner as well.  To learn more about my three unique kids as well as my background check out each of our profiles.  I will also be making a post soon called, "Why we choose to Homeschool."  Thanks for joining us on this journey!  As soon as I figure out how to do it, I plan to add links, pictures and so much more!