Friday, June 1, 2012

Doing Church

In our family going to church on Sunday mornings can be as complicated as going to the moon!  For the rest of the kids at our church going into the 5th grade is sort of like a coming of age.  They no longer go to the children's Sunday School classes or Children's worship, but GET to go to a service with their parents and to Sunday School upstairs in one of the coolest youth worship areas in the land.  The key word is GET to go.  Getting to go to the Youth worship area complete with pop machines, a pool table and air hockey is something every kid at our church looks forward to!  Sitting in worship is not dreaded by most but takes some getting used to.  It wouldn't be such a transition if our children's program and worship were not so fantastic!  I'm sure to a lot of 5th graders the switch from "Powerhouse" to joining their parents can be a let down in musical and dance stimulation until they get used to being "grown up."  We have a great contemporary worship service but as fantastic as that is nothing can compare to "Driving the Bus!"

For kids on the autism spectrum, this change can be debilitating!

Right now I sit with Josh in church and all is well with the world. He is polite and not even very wiggly. The same was not true when Caleb moved up to 5th grade.  At first it was a novelty for him to worship with the adults.  He sat proudly next to me and felt quite grown up.  The honeymoon didn't last long!  Before too many weeks passed, He got more and more fidgety, more and more noisy, and  more and more agitated.  He started saying things quite loudly on purpose to be heard by those around him.  "I'm bored!"  "This is stupid!"  "How much longer?"  He wanted those around him to know that he couldn't sit still this long and was ready to leave.  At first I thought he would get used to it.  But his behaviors only got worse. 

I knew very few people really understood why he behaved the way he did.  I was embarrassed.  Everyone else who had a new 5th grader seemed to be adjusting to being in the sanctuary together.  Sure, all kids wiggle and squirm and ask if the service is almost over, but mine rocked so hard the pew shook and he wanted the pastor to hear him when he said, "This is so dumb!"  He knew church wasn't dumb but just couldn't sit through what he couldn't understand.  Whereas most kids can adapt to the needs of a given social situation, Aspie's can't.  I was at a loss to know what to do with him.


True to every part of our life, God had a plan in mind all along.  Within months of Caleb going onto the 5th grade my husband was asked to take over a position that schedules all of the ushers and greeters.  He also organizes a security team and takes attendance in Sunday School classes all over the building.  He uses radios to communicate all over the church and is never in one place for more than a few minutes.  Over the next few weeks Caleb began spending less and less time in the service and more and more time helping dad.  Before too long all of my husband's responsibilities became a father and son service to our church.  Each Sunday, Caleb knows which responsibilities are his and is a faithful servant.  He no longer comes to church just to worship but to serve!  Caleb has always had a servant's heart and now he has a weekly way to use that gift.  He also helps in the children's ministry by running the sound and video once a month for the program that he loved so much when he was little.   In all honesty I think that serving for Caleb is his way of worship.  


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We recently went to a Homeschool convention in Ohio where the Late Chuck Coleson was scheduled to speak via Skype.  We were really excited to hear and be encouraged by him again.  It was not until we got to the convention that we learned that he was gravely ill.  While walking through the expo hall a book at Mr. Coleson's booth caught my eye.  I had known of it for some time and always wanted to read it.  

 

"Dancing With Max" was written by Chuck Coleson's daughter, Emily.  Max's autism is much more severe than Caleb's.  Much more. After talking to the rep at the booth about why the book caught my eye, Caleb called me. (His cell phone is a security blanket of sorts when we are away from him.) He and the other two kids were home with Grandma for the two days we were gone.  Caleb was having an anxiety moment over not wanting to switch from one set of grandparents to another.  He had locked himself in the bathroom and wouldn't come out!  So, while I had a cell phone counseling session with him, Cory explained to the rep who I was talking to and why.  The rep was so moved over the similarities between us and the book he gave us a copy!

I started reading it that night in the hotel.  Right away I knew that Emily and I would be friends if we ever met. Her wit and stories about raising Max were truly a balm to me! If she could raise Max then surely I could raise Caleb!  I read the entire 2 1/2 hour trip home as well.  Little did we know at the time, but as I was reading about Chuck Coleson baptizing his grandson, Max, that Chuck would pass away that afternoon.  I was so heartbroken when I found out that evening.  I felt like I had been a part of his family just a few hours prior.  

I read the most inspiring part of the book just a few days later.  I immediately had to read it to Cory.  Emily wrote a chapter on her struggles with Max in church.  She soooooooo validated our need to do church differently.  Max does not worship like everyone else either.  He goes to church to serve!  For Caleb, God provided his dad with a position he loves.  For Max, God provided a group of loving men who took him under their wing.  They found jobs for Max to give going to church purpose.  Purpose.  That's what Caleb needed too.  

Over the past two years our decision to not make Caleb sit in the service has been met with much approval.  (If there had been any disdain, I am not aware of it.)  The older men at church comment often that they love to see him serving along side his dad.  It blesses us greatly to know that God is always there providing for Caleb.  He may sit in the sanctuary some day, but until then I can rest assured that it's ok to do church differently.  It's ok to serve as worship.  It's ok to be different, even at church.


Thursday, May 31, 2012

Meds or No Meds...That is the Question!

Meds or No Meds?
We are currently doing an experiment at our house to determine the effectiveness vs. the cost of one of our son's medications.  Do we really need it over the summer or can we get by without it?  For those of you with kiddos on ADHD or mood meds, you know how expensive they can be!  So, does he really need them or not?

Based on this past week, YES HE DOES!  We are mostly done with school for the year.  Each of the kids just has to finish up their math (Teaching Textbooks).  While watching Caleb try to do math over the past week, I am convinced that He needs the meds.  I wonder how he ever learned anything before he started taking them!  So many negative behaviors have reared their ugly heads this past week that I had forgotten about!  He can't concentrate on anything, especially math, which is hard for him, without rocking and making humming and clicking noises.  In 2nd grade he fell out of his chair so often I thought his teacher might have to take it away from him.  That same year he went through so many fidget toys that both his teacher and I were at our wits end knowing how to get him to sit still and concentrate. He used his pencils as drum sticks, sang or hummed to block out other noises and even used his scissors to cut stuff he shouldn't have justo keep his hands busy! We even put sticky velcro under the table part of his desk so he could rub it and have a touchy, feely, tactile experience.  He picked all the velcro off the first day!  He threw the squishy things she gave him to work in his hands, not because he was being ornery, but because he had so much pent up energy.  We are right back to 2nd grade!  And he has to finish 7th grade math!  It will be nearly impossible 'till we get the meds. 

Before having kids, while I was still teaching I came across many kids like mine.  My first impression was always, "Seriously, Why can't he (or she) just sit still and be quiet like everyone else!"  Or, horror of horros, I would think "Why doesn't his (or her) parents expect more of him?"  Oh, the ideals we think everyone should live by before we have kids!  I guess God had at least one lesson in mind for me when he gave me my kids (all of whom have ADD or ADHD), humility!  Never do I judge parents as much as I used to!  

After living with my kids and their differing levels of ADHD severity for the last 13 years, I have come to the conclusion that some brains do lack the ability to sit still and be quiet!  What makes this most frustrating is that neither me nor my husband are really like them.  My husband is as far from ADHD as they come.  Me, well I can be somewhat more like the kids, but not THAT bad!  Until you live with brain differences like this you just can't imagine that punnishment or redirection won't change things.  Their brains are the way they are.  Sometimes I think it would be easier to raise them in a jungle where there are no schools or social expectations. :O)

But, we do have to educate our kids and teach them how to behave socially, so do we wing it on our own or help their brains out?  I had a wnderful professor, while working on my Master's degree a few years ago, who explained the need for meds this way:  "If your child's pancreas didn't make enough insulin, would you try to make it work better by punnishing the child or making him try harder?  Absolutely not!  So, if you have a child whose frontal brain lobes are different from everyone else, causing him or her to lack exectutive functioning skills, will punnishment or trying harder change their brain structure or chemicals?  Absolutely not!"  After living with these kids, I know she is absolutely right.  Nothing we or they do will change the fact that certain chemical and structural differences do exist and no amount of discipline will change that fact.  If we lived in a jungle, the behaviors that result wouldn't matter, but we don't.  So, we have chosen to give them every advantage we can to help them succeed academically and socially.  We have decided that meds are our friends!

Finding just the right med fit has been a long and difficult process for one child and easy peasy for another.  For the kiddo with just ADHD, we tried Concerta and had a kid on honor roll who could controll his impulses within one grading period.  For the other kid, who also has the Asperger's and moods, finding an ADHD med was nearly impossible!  Because most ADHD meds are stimulants, they also stimulated his mood swings.  NOT GOOD!  The doctor warned us that this might happen.  His teacher at the time told us that his ability to concentrate was much improved, but the fallout in his behaviors and at home after he "crashed" in the evenings wasn't worth the benefits.  (Most kids' ADHD meds wear off around 4 - 5:00 in the evening resulting in a mood crash for a while.  For a kid who already has moods, it was debilitating for our family in the evenings!  Chairs flew!)  It was not until 3 years later that we were able to find a good ADHD med fit for Caleb.  Basically, he can't take them unless he is on separate mood stabilizers.  

Before having Caleb I never would have dreamed what our prescription costs per month would be! Before having Caleb, I never would have dreamed that such behaviors could exist in a child who lived in a stable home with both parents and discipline.  (Discipline that works for his siblings.)  Until having Caleb I often (at least in my mind) judged people who needed psychiatric meds.  This is another way God has humbled my way of thinking.  Just as God makes pancreases different, he also makes brains different.  

I also don't want to judge those who choose not to medicate their kids for their brain differences.  There are side effects to these meds and some parents choose not to medicate for the weight loss or other side effects.  At our house, however, the benefits by far outweigh any current side effects.  We had to go through many trials and errors before coming up with just the right med combo for Caleb, however.  When we first tried ADHD meds, the mood swings were bad and like I said, Chairs flew!  One med made him paranoid.  He thought people were following him!  We got him off that one fast!  One med made him gain 50 pounds in 3 months!  Plus that one was over $400 a month!  It stabilized his moods, but the side effects and cost were unhealthy!  One med made him fall asleep about 3 hours after he took it each day.  He kept falling asleep in Social Studies.  Had to stop that one too!  Please remember to keep families with special brained kids in your prayers as these trials are very exhausting!

So, Yes, we have lots of meds at our house.  Yes, it is very expensive!  But, yes, it allows us to fit in socially and academically with the rest of the world.  So, until we move to a jungle, we will keep giving our kids the best advantages we can as well as discipline and counseling.  

What are your thoughts on ADHD and mood meds?  What experiences have you had?  
      

Tuesday, May 29, 2012

All Creatures Great and Small

All things bright and beautiful,
All creatures Great and small,
All things wise and wonderful, The Lord God made them all.

Each little flower that opens,
Each little bird that sings...

I have a son who takes the lyrics to this beautiful old hymn to heart!  He can't pass up any injured creature no matter how great or small!  Today, it was a baby sparrow that he rescued!  After finding it in the backyard hiding from our dog, he promptly picked it up and began talking to it!  He then took it in the house and cuddled it!  I had to think quickly or it would end up living and probably dying in the cage with our two parakeets!  

We ended up letting him rummage through the barn for a suitable cage.  Miracle of miracles, he didn't have to get out any of his dad's power tools without permission, a favorite past time of his... He found an old cage in the loft that I had forgotten about.  

He spent the next hour getting it ready!  He even stone ground and moistened some birdseed just in case its momma still "chewed its food up for it!"  I can see his brain working now!  He probably had images of the beautiful bird cages we see when we visit the nursing home in mind while he carefully arranged the sticks and an old nest for his friend. This is probably his inspiration:

 

Here is what he came up with.  The bird is in there but hiding in the back.

In all honesty Caleb's love of animals can be quite infuriating!   He has a live trap set up in the backyard every night "just to see what might be snooping around the yard."  We have let go both a raccoon and an opossum at the river thanks to that trap!  But seriously, I am more blessed by Caleb's kind heart and nurturing spirit.   I try to look on the bright side of his peculiar Aspie Habits.  God must have a plan for them to make them so evident in his life.  I can rest assured in God's plan for him too...as long as he doesn't catch any snakes! 
  

The "D" Words

A few years ago, when we were in the diagnosis stage of our journey with Asperger's and ADHD, we had a very important question to ask the counselor.  "Do we make him go to church on Wednesday nights or let him get out of it?"  We wanted to make sure that we were doing the right thing.  After all, that's what we do as a family.  Going to our church's Wednesday night youth or kids' program has always been pretty non-negotiable.  Do we let our moody 8 year old tell us what to do as a family or are we the parents, here.

The doctor was frank with us.  He told us that if we made Caleb go to a fun, upbeat program with lots of noise and other kids it would be like putting a sunburned child back on the beach with no sunscreen.  For Caleb, just getting through a day at school, 2 bus rides, the cafeteria and recess, was like getting burned once.  The doctor told us that for healing to begin to take place we should consider limiting his exposure to stimulating social activities.  

We were pretty bummed to have to stay home on Wednesday night's but decided to make the best of it and have our own family nights.  The kids LOVED it!  We have since gotten back into going to youth on Wednesday nights, but the kids still ask to continue family nights.

We decided that since youth is done for this school year, we would do a book together as a family.  We found it at a homeschool convention.  It is called "Draw to Learn: Proverbs."  Draw to Learn Proverbs  We have done the first lesson so far. As we read Proverbs 1: 1 - 6, lots of "D" words stuck out that don't come natural to most kids, especially those who legitimately  have neurological reasons for not being able to think before they act.

The first "D" word is "Discretion."  We talked about using common sense to make wise choices.  


The second "D" word is "Discernment." We talked about knowing the difference between right and wrong to help us make wise choices.


Then we added another "D" word, "Discipline."  We talked about how when one uses discretion and discernment one sees less discipline!  


I have learned over the years that all of us could benefit from a little more of the Big "D's" in our lives.  The lacking of the first two D's however, are two of the hallmarks of having ADHD and Asperger Syndrome.  To these kiddos the Big "D's" need to be explicitly taught over and over and over and over...for you parents of these types of kiddos, you know how frustrating teaching these abstract types of decision making skills can be!


But, as long as these three kiddos are ours to raise, and probably even after they leave the nest, we will keep at it.  Teaching the "Big D's" over and over and over again may give me many gray hairs, but we will "Run and not grow weary!"  God, help us, while we are trying to teach the kids the Three D's!

If we can endure it so can you!

 

Monday, May 28, 2012

Homeschool Blessings

We tend to use this phrase often...

"That's just one of the blessings of homeschooling!" 

If you are the parent of a child who is not at the top of the bell curve for any reason, you know how hard it is to receive just the right services from a public school system.  Our kids all have normal to above normal IQ's but face the challenges of ADHD, Asperger's Syndrome and Dyslexia.  They are smart kids, but have invisible challenges.  They are not behavior problems and do not have obvious learning challenges.  After struggling for years to get our oldest son the help he needed to overcome the academic and social challenges related to Asperger's, we finally took matters entirely into our own hands.


 
80% of learners fall into the orange "average" part of the curve.  The nature of the beast of classrooms containing 25 or more students is that you have to teach to those on the top of the curve.  Kids at the top of the curve not only normal intelligence but also normal abilities to focus and control their emotions and social responses as well.  When a child deviates from the top of the curve, they need "something extra."  In most schools there is little "something extra."  Often the something extra for struggling learners comes from teacher's aids.  It always bothered me that the kids who needed the most help had the lesser educated members of the staff to help them.  All of the aids that helped my sons were wonderful people but I often wondered if they really recognized how much the boys were struggling and knew what to do to help them.  Also, the older the boys got, the less help the school had to offer them.  The squeaky wheels got the grease and my boys didn't squeak much.  Above average intelligence kids may need more academic challenges while kids with below average intelligence or below average abilities in executive functions often need help and encouragement in academics or time and organizational management skills.  Things really get complicated when kids fall on BOTH sides of the bell curve.  This is often the case with ADHD and Dyslexic, and Asperger kiddos.  Their lack of organizational skills and lack of executive functions make them appear to have less than average intelligence.  I live with kids like that!  That's one of the reasons why we have chosen to homeschool.  The following is a lighthearted yet true list of the Blessings heaped on our family since we decided to educate our kiddos at home.  

Blessing #1
"If you don't do math every day, life goes on!"  
When raising a kiddo with Asperger's anxiety rather then academic inability often gets in the way.  Caleb will often flip out if he just thinks he can't do "it."  He needs LOTS of encouragement to try anything new or perceived as new.  To keep him emotionally stable, we often do a half a lesson a day.  Unlike school where the teacher had to teach the 80% without academic or anxiety issues and go on each day no matter whether my son "got it" or not, at home we can pick up where we left off the next day.  At school my son had many gaps in his math skills due to having to be left behind.  It may take him a whole calendar year to do math but who cares?  At least he's getting it!

The same holds true for my other son in reading.  Once he started taking ADHD meds he no longer seemed to struggle in reading 'cause he went on the honor roll within one semester.  He was picking up on everything by listening (and just being a smart little dude) but still couldn't read simple sight words like "was" and "saw" without having to be hyperfocused on recognizing them and sounding them out.  Now, we read what he can at the pace he can and do it while snuggling under a quilt!  Anxiety from reading in front of other kids: GONE!  He probably gained me in terms of reading levels in one year than he would have at school.  He read over 15 novels this past year and didn't cry at night like he did when forced to "read at the same reading level as everyone else."

Blessing #2
Bedtimes have almost become a thing of the past!
We have more family time than ever!  If my husband works late and needs more time to spend with the kids, we just stay up later and start school later the next day.  If we are at youth on a Wednesday night and don't get home 'till 10 p.m. we just sleep in on Thursdays.  I also have more time for my husband.  He is a night owl and stays up much later than me and always has.  Now that I don't have to get up before the chickens in the morning I can stay up and hang out with him.  I love being the superintendent and being able to call a "Mom's in a fog this morning delay!"

Blessing #3
180 days don't have to be sequential!
When a kiddo has a legit reason to not do school, they don't miss anything.  They just pick up where they left off the next day.  Legit reasons when you have a kiddo with Asperger's may be emotional in nature. There were so many days when the emotional and social pressure was just too much for Caleb and he emotionally checked out.  If he checks out at home, I send him fishing or on a bike ride.  The evening fallout is much less.  (Evening fallout was tantrums and meltdowns while he was in school.) Another benefit of sick days in homeschool is the rest of the class does not go on without them.  There are no mounds of makeup homework after the illness to deal with.  Then again there is never any homework in the evenings!  Like the last blessing...MORE time with DAD!

Blessing #4
Jammies and a total lack of makeup are quite acceptable dress code!

Blessing #5
We educate during our BEST times of the day.
Caleb is often pretty emotionally and sensory frazzled by the end of a frantic paced (at least it was for him) day in school.  We rarely spent time with him when he was not emotionally fragile.  Now I can spend time with him before his brain has had enough stimulation for the day.  As a matter of fact, he isn't so overstimulated anymore.  Less overstimulation = less tantrums and meltdowns.

Blessing # 6 
We LOVE picking out our curriculum!
Our kids have loved having curriculum that meets their unique needs.  For example our middle kiddo who struggles with dyslexia used to HATE reading books!  Now that we let him read what he can and what he likes, his reading has just taken off!  One of the biggest blessings to my ears was hearing him tell me, "Mommy, I just love reading now!"  

We also love text books from a Christian perspective!  We use lots of ABEKA books for science, social studies and grammar/writing, Teaching Textbooks for math and A Reason for Spelling for the younger two and Apples for the oldest.  We go to the library often to get more reading books.  We loved using Apologia science this past year, but the reading level will challenge Josh too much so we switched to ABEKA for science next year.  But like we always say, "That's the beauty of homeschooling!"

Blessing # 7
We are sooooo social!
We go sooooooo many places.  Field trips are regular occurrences and not dependent on the state's budget but ours. There are so many places to go and things to do on our agenda, and most of them have been pretty cheap.  Gas for our van is lots cheaper than gas for a bus!  

We are also social with our homeschool coop group.  We take elective classes with them every week!

We are also blessed that our kids are social but not learning how to interact with others in the halls of a middle school.  :O)  

There are many more blessings I could list, but I am tired tonight and want to join the rest of the fam watching "Despicable Me!"  

Blessings to you and your exceptional family this evening as well!


  
  

    

  

Sunday, May 27, 2012

A Beautiful Mind

Date Night!
My husband and I went on the annual "Mom survived another year of homeschooling" date last night.  I got to celebrate taking off the teacher hat for the next few months. Well, the hat comes part way off at least!  We still have to finish up some loose ends and we never really quit learning.  Besides, we are going to a state park for the Memorial Holiday on Monday and that can count as a field trip for next year!

We left the kids with grandma, ate at Red Lobster then decided to take in a movie.  If you have not seen October Baby yet, you need to.  Then again, you may want to wait and just rent it.  If you like crying in public, try to catch it while it is still in the theater.  Otherwise, I would advise seeing it at home!  I had no idea it would be so powerfully emotional!  I would definitely give it 5 stars.  Little did I know when we left the house yesterday afternoon that we would spend the evening crying in the theater!  :O)

Trapped
I'll try not to give the movie away but a line stuck out to my husband that didn't stick with me at first. He was obviously emotional during the movie but not openly weepy like me and all the other women in the theater.  I was surprised, however, at the depth of emotion he was showing when we left.  We were both so deep in thought that we never spoke from the time we left the theater 'till we got in the truck.

When Cory spoke, he mentioned a place in the movie where the main character was writing in her diary and spoke of "feeling trapped in her body."  He teared up and tole me, "I wonder if Caleb feels that way? Teapped in the body he was given?"  I never even thought of that during the movie but since my emotions were already raw, I cried again! 

I know Caleb has to feel that way. He often tells us that he just wants "to be normal" but can't.  He talks about being trapped.  He feels trapped by emotions that he wants to have under controll but can't.  He feels trapped by senses that he can't controll.  He feels trapped because the rest of the world has norms that he just doesn't get.

Unlocking the Trap Door

The rest of the ride home we talked about our role as his parents.  How can we unlock some of the traps that he feels are controlling him?  That's a very daunting thought!  But after talking for a while we realized that we really do hold the keys to unlock lots of doors for Caleb while he's young.  We can help him learn social situations, we can shield him from bullying (as best as we can)(I'll talk about the bullying he endured while still in public school another time.) and we can bring him up in the most stable home that we can(as best as we can create).  And by doing all of these things we can build his self esteem which in turn will be the keys to his future. I'm looking forward to the day when we can turn the keys over to him and watch him take off.

Another realization that we came to last night (that we've always known but haven't talked about in a while) is the fact that God REALLY intended for Caleb to be part of our family and REALLY has a purpose for him.  Now, I know, God has a purpose for all of us, but after seeing a movie where some of the babies survived and some didn't, we were reminded that if our first baby would have lived, then Caleb wouldn't be here.  (We miscarried our 1st and 4th babies.) It's a good reminder for Caleb and a good reminder for us, especially on the bad days, that God kept our other baby for a reason and gave us Caleb for a reason!  He knows the doors that Caleb will eventually unlock.  He knows the beauty of Caleb's mind.  And we have to trust Him that he is giving us the right keys at the right time to help Caleb get there!

Blessings to you parents of "trapped children" out there!  My prayer tonight is that God will give you the keys to unlock trapped doors in your own childrens' lives!  Someday, they will be writing the blogs about how, with God's help, their parents helped set them free!