On Wings of Eagles

I was feeling so tired and overwhelmed with everything that we did last week, everything coming up, and all that is going to happen with school starting:  IEP meetings, new teachers, new classmates, new routines to establish, etc.

And to tell you the truth, we just really have a lot to deal with these days.

“These days” started around November 2002 when the twins were born; one being extremely sensitive to everything and cried most of the first 4 months.

It seemed then, that we had “too much on our plate” as people would say to us.  Then Sketch was born and we heard that even more.  Then Dash was diagnosed with autism in 2004 (I think the extreme ADHD part didn’t need a diagnosis, it spoke for itself!)

At this point, friends we had made started to disappear. I think it was just too much for them; they didn’t know what to do, they were ovewhelmed by what they saw and so they must have decided to just not get involved; to take a step back.

Then Sketch’s medical problems (eczema, reflux, food allergies, extreme asthma) started around the age of 10 months, in 2006.  Things got harder than “too much”.

In 2007, when Sketch was 2, he was also diagnosed with autism.  His color on the spectrum was very different from Dash. Dash is more yellow: a sensory seeker-extreme boy type.  Sketch is more red: the sensory avoider-anxious type… the kind that tends to have terrible meltdowns…often.  In 2011, he was also diagnosed with ADHD and anxiety.

Our surprise baby in 2011 has been a wonderful joy, but along with her came a sudden onset of crippling aggressive Rheumatoid Arthritis for me.

I won’t even go into the many other things that could be added to the list along with these. It’s too much to type.  Too much to read.  It IS overwhelming.

On Sunday when I was standing in worship, singing the songs that had been chosen for that day, the words to Chris Tomlin’s song “Everlasting God” really struck me.  They are directly from the Scriptures:

Isaiah 40:28-31

Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the week. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

And relief poured over me as I felt my heart beat slow, muscles unclench, and a calmness settle on my shoulders. There IS ONE who will never grow tired or weary of hearing what goes on at our house; in our lives.  There is ONE who will listen over and over to my problems, to my complaints about my RA pains and symptoms.  He understands like no other; he understands completely.

Not only is He always there to pour out my heart to, but He promises to give me strength to carry on. He will make me soar on eagles wings, and run this race without growing weary.

Matt 11:29-30 says, “Take my yoke upon you and learn from me, for I am gentle and humble in heart and you will find rest for your souls.  For my yoke is easy and my burden is light.

 

Click here:  Everlasting God by Chris Tomlin  to listen to the song.

 

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Family Roles

“Sketch, we are going to Whole Foods in 5 minutes.”

“No!  No Whole Foods?”

“Yes, we need to go while the others are at the track.  In 5 minutes you need to get dressed.”  I give him a warning; time to let the idea sink in.  I set the timer, which usually helps a bit, but not this time.

“Beep! Beep! Beep!”

“Sketch, let’s get dressed.”

“No! Are you all done?” He starts kicking me with his ever-stretching 7-year-old legs.  I back up, he comes toward me to hit and kick until I leave the room.

He slams the door.  Repeatedly.

As if on cue, I connect the eye hook so he can’t continue to slam the door.  It’s what he wants. His door is broken (I wonder why?) and won’t latch anymore.

As I close the door, I see him dart to the bed, his almost toothless grin spreading ear to ear.  He is having fun. I hear the tell-tale signs that someone is jumping on his bed behind that closed door.

I know I am playing the exact role he wants me to play. I know that he is “winning”.   But, it just isn’t worth it.  I can’t physically move him anymore; I can’t make him come to the store.

So, I choose my battles, and this isn’t it. This time.

I think about how he doesn’t play a part in the family.  He is in his own little world most of the day unless he wants something.  He doesn’t do any chores or tasks; he doesn’t help out on any regular basis.

Dash (9, autism/adhd) used to be the same way.  Now he plays a big role in the family: proudly helping with recycling and trash, watching PolkaDot and letting me know if there is a problem, going to the store and helping with loading the groceries and bringing them in from the car.   He also has chores, which he does not want to do.  And he will gripe, groan, grouse and growl until our ears ache from it.  But he does do it–especially when computer time depends on it.

Sketch still does nothing.  Partly, this is because we have always been so busy with Dash (who has the most severe case of ADHD I have ever seen) keeping him safe, making sure he doesn’t jump out a window or anything, that we never had time to spend teaching Sketch or helping him have a role or chore.

Now, Dash is doing splendidly!  Now, it’s time we focus on pulling Sketch up through the crack he’d fallen through.

There is so much potential that we see with Sketch.  Last week I took him to the grocery store with me because we were out of his favorite snack foods. He did a surprisingly good job (I would say, smashingly good job, but that may put a whole different picture in your minds : )  getting some of the grocery items off the shelves, loading the items onto the belt for purchase, and putting the bags in the car. He really seemed proud of himself!

But he does not see this as his “role” in the family. There have been many times when he’d refuse to go to the store even when it was to get his beloved Stoneyfield French Vanilla Yogurt. He’d rather do his own thing in his own world and not have to bother with the workings of the family.

However…

It really caused a blockade for us this time. We couldn’t have the dinner I’d planned, because the main dish was still sitting in the refrigerator section at the store.

The next day I took PolkaDot to Whole Foods, and Sketch went to the track (after the use of Mr. Incredibles super-powers, to get him there) with the others.  I had told him that we need him to play his part in the family or we just can’t function. We can’t get things done without him.  I told him he is very important and that we need him.

The idea that we can’t function without Sketch playing his role reminded me of the Body of Christ, and how we all have a part to play in the Body in order for it to function.

But so often we sit on the chairs and watch others do the doing. We don’t get involved, we don’t find our roles.  We sit in our own little worlds and do our own thing…just like kids with autism so often do.

We all have to do our part in order for the Body to work right, no matter how small (in our eyes) that part may be. Sometimes the result of our lack of participation is not as obvious to us. After all, “No one is ever told what would have happened.” (Aslan’s sage observation from The Lion, The Witch and The Wardrobe, by C.S. Lewis)

1 Corinthians 12: 12-26

Just as a body, though one, has many parts, but all its many parts form one body, so it is with Christ.  For we were all baptized by one Spirit so as to form one body—whether Jews or Gentiles, slave or free—and we were all given the one Spirit to drink. Even so the body is not made up of one part but of many.

Now if the foot should say, “Because I am not a hand, I do not belong to the body,” it would not for that reason stop being part of the body. And if the ear should say, “Because I am not an eye, I do not belong to the body,” it would not for that reason stop being part of the body. If the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be? But in fact God has placed the parts in the body, every one of them, just as he wanted them to be. 19 If they were all one part, where would the body be? 20 As it is, there are many parts, but one body.

The eye cannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!” On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has put the body together, giving greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it.

The Treasure of Friendship

Sketch ran away. Again.

It is really getting frustrating to have to constantly think about where he is, what he’s doing.

Is he still doing what he was doing just a minute ago?  How about now?

It’s a source of constant anxiety leading to panic when he’s out of sight.

So many times he is right where he should be, we just can’t see him.  But, the anxiety continues to rise until his body is visible again.

Just yesterday this happened. He went exploring in the small strip of woods along the side of our yard. It was about to rain, and I’d seen him go back there so I wasn’t too worried. Not worried, that is, until I lifted PolkaDot to my hip and walked across the yard with aching back, wrists, feet and knees (due to RA) to tell him to come inside only to find that I couldn’t find him at all. He’d vanished!  I knew I couldn’t search far, especially while carrying my 1 year old. Then I heard him scripting (I thanked God for his scripting this time!) and knew he was nearby.

But tonight when I wasn’t worried, is when I should have been worried.  That’s how it works, you know.

Sketch was outside snacking on Pirate Booty.  I was inside with my new best friend, the Kitchen Aid, watching it tirelessly work kneading dough for pizza tonight. Mr. Incredible was with the other 3 kids.  Next thing I know there is a house shaking “KNOCK – KNOCK – KNOCK” on the door, scared me right out of my rolling pin!

It was our neighbor, “Is this one yours?” he asks, as Sketch happily trots and scripts, signing to himself in the back yard.

“Yes it is.  Where did you find him?”

“Oh, down at my house.  I thought he was yours.”

“Did he give you a hard time coming back here?” I cringe, sure he fought him the entire way…like last year.

“No, he just ran to each house along the way, knocked on their doors.” He said with a smile.

Yes, I am very blessed with friendly neighbors who find my children far more often than I know they need to be found. It is an interesting way to meet ones neighbors, I might add.

Tonight when I posted on my Facebook wall that Sketch ran away again, several friends joined in the discussion because they either have the same problem with their child with autism, or they have ideas on how to help keep the children from running away.

I have made so many friends because of autism, that I never would have known otherwise. Friends literally across the world!  Some of these friends are among my closest friends, even though we have never physically met (yet!).

That is a true, true Treasure:  Friendship.

Friends who really do understand what it’s like to raise kids who don’t fit the mold.

Who have kids who are so smart there is no child proofing that can contain them.

Friends who struggle with children who go three days straight without sleep.

Friends who know what it’s like to have children prone to outrageous meltdowns due to sensory processing disorders that travel along with autism.

Friends who know what it’s like to have a child missing, not knowing if they are alive or if they drowned in the pond down the street. Not knowing if they were hit by that car coming over the hill ask they pranced up it oblivious to the dangers.

Some things we deal with in the autism world are so opposite from what “normal” parenting requires, but we are not alone.  God has given us each other.  He has made us find each other even when we reside on opposite sides of the globe.

As strange as some of the things that we deal with are, we are not ever alone in dealing with it.  “What has been will be again, what has been done will be done again, there is nothing new under the sun.” Ecclesiastes  1:9

Distracted Drivers

In lane and focused!

The stroller swells up toward the hazy sky as piles of swim gear, diaper bags, book bags and lunch boxes of 4 children are mounted on top of the seat.  It wobbles left to right, swerving to the grass alongside the concrete path toward the recreation building.

“Sketch! Look out!  You are driving off the road!”

His head was turning in every direction but the one pointing to where he was going.  The jogger stroller seemed to have a mind of it’s own…one under the influence of too much drink.

He looks ahead at the stroller, then at the sidewalk and corrects his 7 year old driving as best he can, considering it’s his first “driving” lesson.

The swerving slows and is under much better control for about one second.  Sketch is back to his standard staring off unintentionally  at the buildings and people and birds fluttering about on the college campus.

Background info:  We were on St. Joseph’s college for the weekend. It was the annual Autism Society of Maine’s Family Retreat.  We laugh at the “retreat” part, since we are always so exhausted from sleepless children by the end of it.  But, they do a fabulous job providing wonderful people who volunteer to do respite for the kids with autism as well as their siblings.

The gym was filled with bounce houses and fun activities for them.  The swimming pool was in the same building, and the kids could swim several times a day. It was great.  Even though Sketch attempted to go A-wall several times, he was always caught before a true escape. Meanwhile, the parents were able to attend conferences and chat with each other without worrying about the kids…a rare moment indeed!

It amazes me, how Sketch can seem to be watching everything all at once.  Everything, that is, except for what he is supposed to be focusing on.  I think about what a good activity this is for him to realize his actions count. That he needs to pay attention and understand the consequences of not focusing.

In the RDI (Relationship Development Intervention) framework, he is having to do his share of the work. I’m not fixing it for him. I’m not helping him drive straight or keeping the stroller from spilling over. He has to adjust what he’s doing in order to prevent a crash.  As long as I don’t physically interfere, he IS able adjust himself and his actions, to keep the stroller upright and going in the right general direction.

What I did was “spotlight”  what Sketch needed to be paying attention to. He was unable to filter out all the visual and auditory “clutter” out there on the campus.  He wasn’t able to discern what was important to pay attention too, and what he needed to block out. By obviously highlighting what he needed to pay attention to by calling out, “What’s happening!  You are going off the road!” when he’d become distracted, he could correct his focus and get back on track.

He also had a job that was meaningful. We all needed to get to the recreation building, and everyone needed their stuff to get there too.  By guiding Sketch to enable him to  fulfill his own role, it helped him gain a sense of importance and competence.  We were counting on him, and he was learning how to do it!  More than learning to drive the stroller, he was learning to pay attention to what he was doing, and to accept instruction from me that tore him away from his self-made scripting world and brought him into our world. This is not an easy thing for him to do; he spent 70% of his school day last year scripting!

It was so inspiring to watch this unfold.  It was so great to see him helping out the family instead of tagging along.  So incredible to see him proud of himself…trying to do something new.  So awesome to see him actually pay attention to something and deal with the consequences of  his own actions!

This whole scenario made me think.  How often are we swerving, or driving off the path of our life in need of someone to call out to us “Hey, you’re driving off the road!  Look where you are going!”

Someone is always watching and guiding us toward the finish line–someone else is always trying to distract our focus onto our circumstances.

Jesus is who we are to focus on as we go down our path.  After all, we are “Christ followers”.  Yet, it’s so easy to be distracted by all the circumstantial clutter in our lives. When we go off-path, it is easy to fall into thinking about all the hard things, the things that are causing us great stress, the things that I refer to as “dust”.

It is so good to know that He is always there calling us back, perfecting our faith!

So if you are a distracted driver, are you listening to your Father say, “Hey, you’re going off the road!” and adjusting your behavior to go back on the right path?

Sketch’s autism and ADHD requires him to learn what to fix his 7 year old eyes on,  in order to accomplish any given task, and this is probably going to be a life-long lesson he will learn by practicing it.

Fixing our eyes on Jesus is a life-long lesson that we have to work on, to practice through out the different circumstances that arise in our lives.

If you are a distracted driver, let the Father take hold of your face, lift your head, look you in the eyes and listen to him tell you, “This is the way; walk in it” (Is 30:21)

Hebrews 12:1-3 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us,  fixing our eyes on Jesus,the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

 

Playing Hide and Seek

Where's Princess Buttercup?

For the second time today, I lost Sketch. (Note:  this was written a few weeks ago)

But, before I go into that story, let me give you some background information.

There has been a bit of a theme around here, with the game Hide-And-Seek. The other day, the twins Dash and Princess Buttercup were playing this game together in the basement.  It was so fun to watch them play and hear them laugh together…well, until Princess comes out crying because Dash stopped looking for her and she was waiting in her hiding place for quite a while.  He got distracted by something he suddenly considered to be more fun. Oh, the joys of ADHD along with the lack of awareness of social rules or how his behavior effects others!

For those of you who are new to this blog, let me introduce to you the cast of characters: Sketch is our 6 years old boy, with autism/adhd/anxiety.  Dash & Princess Buttercup are 9 year old twins. Dash also has autism/adhd, and Polkadot, is our 6 month old baby girl.

Back to today. The first time Sketch went missing was at church when he wandered off after Sunday School.  In his mind, he followed the rules. The teacher told him, “You need to stay in this room until your parents come.”  And, he did.  And when we got there, he left…sigh… At least he was found (after much heart pounding) and he was very much ok.  He looked up at me with a smirk and said, “Hide-And-Seek?”

Sketch must have been noticing what the other kids in Sunday School were doing, because another child was also “missing” today.  It turned out that she was playing Hide-And-Seek but her mom was not aware of this.  As her mom and the Sunday School teachers looked for her, Dash was pointing to the hiding place saying, “She’s in here!” but ironically, no one listened to him.

Fast forward to later on this afternoon. Sketch went missing again!  When I realized it was very quiet in the house, I called out to Mr. Incredible who was laying on the couch, “Where’s Sketch?”  Off in the not-so-distant bedroom came his cute little voice under his bright red and green VeggieTales comforter, “Here I am!”  (This is the first time he’s ever answered that unprompted!)

This morning, as we drove to church, we drove by another church with a sign displaying 2 Chronicles 15:2 “If you seek Him, He will be found by you”.

Seems like God likes to play Hide-And-Seek as well.  Problem is… sometimes we aren’t seeking…or maybe we were and we got distracted by something that seems to be more interesting.  Or, maybe we are seeking but like so often happens, we can’t see what’s right before our eyes until somebody else calls our attention to it saying, “Here He is!  He’s in here!”

The nice thing about Hide-And-Seek with God is that He will always be found by you.  If call for him, he will answer “Here I am” just like Sketch did this afternoon.

The question is, are we listening?

Here I am!

Jeremiah 29:13-14: You will seek me and find me when you seek me with all your heart. I will be found by you,” declares the LORD,“and will bring you back from captivity.

Was That A Vacation?

Six and a half hours into our drive home, with just a little over 1 hour of driving left, the worst thing that can happen–that dreaded “what if?”, happened.

They say 90% of the time, what you most fear never happens.  I guess that was true on this trip.  More than 90% of the time was fun, but that 10% that was bad, was very, very bad.

9 year old Dash (adhd/autism) would correct these numbers to 1 1/2 hours out of an 81 hour trip = .02%.  Technically, we got off light.  It should have been 8.1 hours of what we feared most, and for this (not happening), I am very, very grateful!

It’s so easy to let the torture of being crammed in a car with 4 children (2 adhd/autism, 1 neurotypical, and one 7 month old) and a husband for that last hour+ with the baby crying, which set of my 6 year old Sketch (autism/anxiety/adhd) into one of those classic autism-screeches that just blows your eardrums out along with the few brain cells that were left behind after childbirth, cloud your thoughts of EVER doing something like THAT again!

But, now that time has calmed me down and blurred the horrors of last night (NOT), I’m ready to think about the other 79.5 hours of the vacation that were really, quite nice!

We went to the same hotel we went to last year, and met Mr. Incredibles parents there.  The main attraction at this location is the indoor swimming pool.

It was truly one of the best vacations we’ve had.  Normally we laugh (read cry) at the thought of a “vacation” because it is so exhausting to take our family anywhere, but this time… I think it counts as a true vacation!

As a family, we had no children missing at any rest stops or during the hotel stay. We didn’t even feel the need to booby-trap the door to our room so if anyone tried to escape in the middle of the night, the noise would wake us up…well, ok… Mr. Incredible did leave a very noisy bag of chips in front of the door the first night, just in case (by the way, have you noticed how loud chip bags have become?  Sunchips are especially noisy.).

We had NO COMPLAINTS from the people staying beside us or below us for noise or stomping or screaming!

During the entire trip, no one bolted!  I am still in shock of this one!

Every single one of the kids surprised me with how much they have progressed in the last year, and how well they were behaved.

Dash slept like he normally does at home instead of keeping his reputation up of 24/7 wakeful hours 3 days in a row. He was wonderful swimming, and compared to last year, he was not afraid of getting his face wet, or going under water. He didn’t “drown” even once!

Sketch handled so much change and even several disappointments very, very well.  He was absolutely amazing in the pool. He  has made so much progress!  Last year he wouldn’t leave the steps leading into the pool because he didn’t want to get his swimsuit wet.  This year, he went all the way in and traveled the perimeter of the pool all the way to the super-deep section of 4 1/2 feet (insert big proud smile here)  and climbed the ladder to get out of the pool all by himself.  He was his very happy self, a side of him that his grandparents haven’t seen before because he’s usually too stressed out by all the changes and the new environment to “be himself”.  But this time, he was hilarious and engaged with a lot of back and forth interaction.  He also coped with no DVD’s for the entire trip. This was an accident, we’d brought them, but we did not have the power cord to the DVD player.  He handled it amazingly well (insert another big smile here).

Princess Buttercup had a great time, as always.  She had a blast playing Dicecapades with her Grambo (what she calls her grandma).  She was a great big helper with her baby sister and her little brother.  She shared a room with her twin brother (Dash) and there was minimal complaining and fighting!  She also practiced playing underwater this year, something she wouldn’t even try last year.  She learned to “sit” on the bottom of the pool and dove for quarters with Dash!

Polkadot was a little angel.  She even slept pretty well for her first road trip!  She was very alert and happy, taking in everything she saw.  She wasn’t so sure about Daddy jumping out of the water unexpectedly with goggles and wet hair, but she adapted after that initial shock just fine.  She had a lot of fun showing off all her “tricks” to Grambo, like zerberting a fresh spoonful of baby food right at her (ha ha!) and sitting up big and tall, “reading” her board books. She even handled her very off-schedule days with no problems at all. She never cried when she was tired, she just would fall asleep and wake up happy.  Quite a big surprise!

And, Mr. Incredible behaved himself as well (hee-hee).

There is so much to be thankful and grateful for on this vacation.  Taking out my treasure stone that I kept to remember the lesson I learned last year about the gifts God gives us (click here for more on that),  I have decided to “let go” of that .02% of yuck, and cling to the wonderful memories and good times we had.

Colossians 3:15-16 Let the peace of Christ rule in your hearts, since as members of one body you were called to peace. And be thankful. Let the message of Christ dwell among you richly as you teach and admonish one another with all wisdom through psalms, hymns, and songs from the Spirit, singing to God with gratitude in your hearts.

On The First Day of Winter My True Love Gave To Me…

Today it happened again.  Either these boys have inside knowledge about the weather, or Someone out there really loves them a lot and wants to make them happy!

It was Sketch this morning, who came out from his room, looked at the window with the ketcup-stained curtains still pulled closed, and asked, “Snow?”

I opened the curtain and looked outside, but there was no snow.

“Snow?” he asks again.

“Not today, Sketch.” I confidently reply, since I’d already checked the weather forecast.

No more than 5 minutes later a fluttering flake catches my eye.  Then another, and another.  “Sketch, look outside! It’s snowing!”

Rewind to nine days earlier, on the first day of Winter.  Dash comes downstairs and wanted to look outside.

“It’s the first day of Winter! We get snow!” he looks out the window, “Where’s the snow?”

I told him there is no snow today but that we’re supposed to get snow on Christmas. He was disappointed and left the kitchen. Then, I look out the window and wouldn’t you know, there was SNOW!

God really does care about the little things… really enjoys giving his loved ones things to make them happy.

I almost titled this post something like:  But What About the Stink?

Why, you ask?  Well, let me tell you…

I started this post weeks ago, well before the first day of Winter. I was having a Really-Bad-Day because things were going downhill quick in regards to our in-home supports.  Each boy was approved for 18 hours and we were using most of them.  But, big problems were getting worse and on this day, I knew it was over.  Our supports would yet again, be yanked out from underneath us.  The hardest part is that the boys were both attached to the staff we had, and we’d have to try to explain to them why they weren’t coming anymore, and the reason for this was not a reason a 6 and 9 year old should know.

It was a Tuesday when this all was going down. I was so worried about this, along with the other ramifications of  loosing 32 hours of help a week when I needed it more than ever.  Regardless,  I drive to the church for Ladies Bible Study:  Beth Moore’s “Believing God”.  I walked in to the study distracted and upset by all that was going on.  Funny… it really seems little compared to the other recent trials like job losses, health insurance loss and Rheumatoid Arthritis making it’s presence known.  God sure had taken care of all those “big” problems, in really BIG ways, too!

After missing the first part of Beth’s talk due to worry, I start to tune in to what Beth Moore was saying, and she was talking about what Martha was worried about with Lazarus.  Martha didn’t worry about if  Jesus could take care of the big problem of raising Lazarus from the dead. Instead, Martha worried because Lazarus had been in the tomb for 4 days and he may stink!     “But, Lord,” said Martha, the sister of the dead man, “by this time there is a bad odor, for he has been there four days.” Luke 11:39  (I love Beth Moore, I don’t think I would have ever picked up on that line on my own!)

And it is so true, that we often believe God for the big problems, but think He is too busy for the stinky little ones, or we think they don’t matter to God.  Neither are true.

God does care about the seemingly little things. He has taken care of the boys emotions regarding the sudden loss of staff.  He’s taken care of us during our loss of help too.  And, He even took care of the boys desire to see snow on the first day of Winter!

Philippians 4:6-7 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

What little things has God done for you?   Please add you experience and encouragement to this post with your comments!

Recommended Readings:

The Colors of Space in the Craziness of Time

Muller Moments

Struck Down But Not Destroyed

Struck Down But Not Destroyed

‘Twas a dark and stormy night… well, it was the night that Hurricane Irene blew threw New England.  As lightening struck randomly outside, it seemed to have struck very specifically inside. Right through to my joints, introducing a whole new texture to the dust in our lives.

I woke up in the middle of the night to feed Polkadot, and when I tried to move, I realized I’d been struck by lightening.  At least, that’s how it felt.  My joints were on fire.  The next day I went to the doctor and was diagnosed with bursitis in my right shoulder, and the other achy joints were kind of dismissed as tendonitis due to repetitive motion from dealing with a new baby…basically, it was a coincidence that they were all hurting at once.

Over the next few days, the “achy” joints became excruciatingly painful as well.  I was unable to do anything without the electrocuting pain bringing me to tears. It seemed like I was crippled over night.  It was clear, that this was more than it initially seemed.  Over the next few weeks, after many calls to the doctor, and much labwork, I have been diagnosed with Rheumatoid Arthritis.  RA is a life-long autoimmune condition that has devastating potential as it damages the joints and possibly internal organs as well.

So here we are, a brand new baby (now 8 weeks old!) and 3 other kids, 2 with Autism/Adhd, posssibly Tourettes not to mention the food allergies of anaphylactic proportions!  If it didn’t hurt so much, it would almost be humorous.  At some point, enough is enough.  At some point, the options are to give up completely, or to rely on the God who holds all things together…especially my joints!

It’s funny what people think at times like this.  Said aloud or thought silently, they are there non-the-less… Questions.

“How could this happen?  You did not need this!  What are you going to do? How are you managing with your family? How could God let this happen?  You have enough on your plate already!”

The questions have run through my head as well, which is probably why that “look” is all I need to hear it in someone else.

It’s ok though. To ask the questions, that is.  They need to be asked, after all!  Better to wonder where God is in this than to NOT wonder where he is!

And the questions don’t scare me. As I said, I’ve thought them, and God has supplied the answers, the comfort. He’s sung the songs over me at night, whispering to me in the morning.

I remember one day specifically when the lyrics of 2 songs collided beautifully in my mind.

One was Tommy Walkers, “I Have a Hope” (lyrics are listed below).  We’d sung it in church right after the pain had started. The song is one of the most uplifting songs out there, reminding me that God has a plan for me that is good (despite my circumstances) and that He can turn this darkness into light.  He is giving me a new beginning, not a painful end!

The other song was “The Voice of Truth” by Casting Crowns.  I woke up one morning to that song playing in my mind, loudly in my ears as if God were placing headphones on me!  The chorus says:

“But the Voice of truth tells me a different story
the Voice of truth says “do not be afraid!”
and the Voice of truth says “this is for My glory”
Out of all the voices calling out to me
I will choose to listen and believe the Voice of truth”

The lyrics to those two songs intermixed in my mind for the next few days. As I would be thinking of how scary this is, not knowing what was happening to me, and if it would ever end, “Do not be afraid!” would remind me that “I have a destiny that is yet awaiting me.  My life’s not over, a new beginning’s just begun”.  And then the chorus would come “I will yet praise Him, my great Redeemer. I will yet stand up and give Him glory with my Life. He takes my darkness and He turns it into light I will yet praise Him, my Lord my God.”  And that would remind me that “This is for my glory” and I WILL choose to listen and believe the Voice of Truth!  “Though trials may come, I have this hope!”

How’s that for cool?  The God of the universe is entering my world through music, strengthening my faith, encouraging me to believe Him.  To believe that His promises are still true, regardless of my circumstances and as a matter of fact, because trials do come in this life, they are there to encourage me!  Why would God bother with promises if we never had need of them?

And finally, the big question looming out there that no one wants to ask is:  Why did He give us a surprise baby to care for  and then allow this?

That one is easy.  Polkadot is such a Joy to have here with me, and amidst the worst pain, when she smiles at me, that smile strikes straight through that pain, into my heart and reminds me that God has been so good to me!

So it has been not of my own strength, but because of His presence, His words, His body, even… that I have not been destroyed in this.

The body, our local church, has been wonderful in all this. Encouraging me, praying fervently, helping with things that I can no longer do. And the part of the body closest to me, My wonderful Mr. Incredible, has used his super-strength now for 3 weeks, being my arms to reach and lift things, my hands to open packages and containers. He’s been my fingers, tying my shoes, and basically he has been my whole body, doing most everything for the kids.

I may have been struck down, but they are here to help me up.  I may have been struck down, but I have not been destroyed. As a matter of fact, in my weakness, God is making my faith strong…

2 Corinthians 12:9-10: But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

I HAVE A HOPE by Tommy Walker

I have a hope, I have a future
I have a destiny that is yet awaiting me
My life’s not over, a new beginning’s just begun
I have a hope, I have this hope

God has a plan, it’s not to harm me
But it’s to prosper me and to hear me when I call
He intercedes for me, working all things for my good
Though trials may come I have this hope

Chorus
I will yet praise Him, my great Redeemer
I will yet stand up and give Him glory with my life
He takes my darkness and He turns it into light
I will yet praise Him, my Lord my God

My God is for me, He’s not against me
So tell me whom then, tell me whom then shall I fear
He has prepared for me
Great works He’ll help me to complete
I have a hope, I have this hope

Goodness and mercy, they’re gonna follow me
And I’ll forever dwell in the house of my great King
No eye has ever seen all He’s preparing there for me
Though trials may come, I have this hope

Bridge
There’s still hope for me today
‘Cause the God heaven loves me

Mothers Day in a Spectrummy Kinda Way

What a day!  I was just starting to wake this morning, with the gentle breeze blowing the sheers in the window along with the yellow rays of sunlight, when my dear Princess Buttercup enters the room.  Perfect timing.  She carried a silver tray with a heirloom coffee pot full of that wonderful, favorite dark roast blend, full-caffiene coffee that I love, mixed with perfect dashes of cream and sugar.

On the tray was also a wonderful breakfast with freshly baked muffin, freshly picked berries from the garden, a beautifully folded veggie omlet and home-made hashbrowns.  She’d been up for a while, it seems!  She balanced all of this on her 8 year old hand, and carried it up the stairs to me, dressed in fine lenin,  wild flowers tucked into her french braids and corsage on her wrist!  When did she learn to french braid her own hair?

Next comes Dash, the Princess’ twin brother.  He is wearing a 3 piece suit with boutonnière.  Perfectly groomed, he comes bearing gifts of various sizes.  And behind him comes the youngest little cherub, Sketch (6), also dressed formally with boutonniere.  Sketch has drawn beautiful pictures, fit for an art gallery, of sunshine and roses dancing around his family.  What a portrait!

Mr. Incredible had already fed the 3 little ones, and made sure they were all ready for church this morning.

We walk into the building beaming with the wonders of Mothers Day… the children calm and beautiful.

Lunch afterward was even better.

We went to a very expensive, fancy restaurant… Mr. Incredible had made reservations so there was no waiting.  The children sat in their chairs at the table, engaging in polite conversation as we enjoyed our meals.  A piano was being played in the background… more wonderful coffee…the atmosphere just perfect.

Once home, Mr. Incredible and I snuck in an afternoon nap as the children cleaned the house.  We woke up to sparkling floors and lemon-scent bathrooms. No dust in sight!

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Ok, what really happened was more like this:

We wake up to Dash (for those who don’t know, he has autism & a heavy dose of adhd) yelling in his room because he’s frustrated with his k’nex.  He decides he’s hungry so he finds his most irritatingly fussy voice, pushes our door open and with it demands, “I’m hungry. I want some food to eat!”  Correct pronouns…but really???

This does not wake us into a good mood at all…so we tell him to go this his room and be quiet!  Waiting for a more inviting moment to get up, we listen to him continue to complain and fuss.  Giving up on that idea, I sneak downstairs to take my shower so we will have enough time for church.

Mr. Incredible makes sure to give Dash his medication for adhd so he will be easier to live with calm down and be more likely to get ready for church.

After my shower, I entertain the kids while Mr. Incredible gets cleaned up and ready for church.  This means, I sit next to Sketch (also with autism & adhd) and draw copies of DVD covers, perfectly according to his specifications, and including all the fine print, just like the past 100 times he had me do this!!!  But Sketch is happy…

Princess Buttercup is dressed in jeans and her butterfly shirt she’s worn the last few days, hair un-brushed.  Dash clothed himself in a red t-shirt and baggy jeans…hair mixed with breakfast crumbs!  At this point, Sketch is still dressed in his routine outfit of unraveling blue knit hat, and undies.

Mr. Incredible made an adorable Mothers Day video for me, with the kids all saying, “Happy Mothers Day! I love you, Mommy!”  It was very cute.   Then came some Mothers Day presents and cards.  I do have a very nice cup of coffee (k-cup style, dripped directly into a stained & cracked mug) this morning!

Finishing getting ready for church went fairly smoothly, with only one or two meltdowns.  This morning it is because Dash’s worst fear confronted him as a wasp flew into the kitchen.  Full-blown panick-stricken child of 8 tears through the house to his bedroom where he is “safe”.  We don’t see him again until it is time to load up the car…and of course, there is a bumblebee in the greenhouse right next to the car!

On the way to church, Dash concludes that he will play outside again in the winter, when it is safe because there are no bees.

Church went wonderfully.  The kids stayed in their sunday school class and no one had meltdown, and no one was kicking other children… That was sooo nice.

On the way out of church though, was another story.  Dash’s phobia of bees is worse this year. He screamed the entire way to the car because the sun was out and there may be a bee…ugh!

Besides that screaming fit,  they behaved very well at Sunday School, and we told Sketch if he was good we could go through the drive through at McDonalds (cheers from all the kids, and Sketch was truly beaming in excitement!).

Now, he (Sketch) doesn’t eat ANYTHING there, nor can he (except for a pre-packaged juice box, but he won’t drink that because it isn’t White-Grape juice, and it has to be in his Nalgene sippy cup) because of food allergies. He was incredibly excited though, because he got to listen to the drive-thru attendant talk through the speaker, and watch the entire transaction. HEAVEN!

We didn’t get lunch there, we just got some Vitamin Water… never underestimate the power of a Vitamin Water bribe!

At home I cook lunch.  Dash throws a major fit because Sketch came in the house and left the door open for a few seconds (bees could come in, you know!) so he ends up in his room to calm down.

I had bought some toaster waffles (so I didn’t have to cook) and microwave organic sausages, and pears.  Just heat & serve on Solo paper plates!  The afternoon continued as any Sunday afternoon would… a couple meltdowns, a couple defiant I-don’t-want-to screams, watching Veggie Tales, trying to sneak in a nap, cooking & dishes.

Dinner plans you ask??  Well of course!  Frozen Pizza!  Newmans Own.  Just heat & serve!

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This was a typical Mothers Day for us.  Knowing we wouldn’t go out to eat today, I made things the kids would love  & enjoy (and eat without complaining) with minimal “work”.  They loved it and were very happy to have it, which makes me very happy too.  Meals can be big stressors around here, so by eliminating that for the day is very much a break for us all!  Incorporating things like drive-thru’s to make a child beam in delight is another easy thing to make the day go more smoothly and joyfully.  If I could have contained all the bees in the area today, I would have done that too!  It is because of my kids that I am given the title of Mom.  Giving them a less-stress day is just as meaningful to me as if I were relaxing on Mothers Day.

Typical days are full of stress in a house with kids on the spectrum.  Stress often leads to short tempers, and harsher-than-intended words (like this morning with Dash).

Today at church we sang a wonderful song called More Than Amazing.  In the chorus, it says, “Forgetting all my sins, You remember all your promises”.  What a wonderful thing to be reminded of:  That our God does not make his promises to us (to help, protect, love, provide, etc.) contingent on our “good behavior”.  He remembers all his promises and applies them to our lives even when we are messing up over & over again.  And you can bet your bottom dollar that enjoys giving rest to his children too!

Psalm 127:2
It is useless for you to work so hard from early morning until late at night, anxiously working for food to eat; for God gives rest to his loved ones.

Isaiah 40: 29-31

29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Happy Mothers Day everyone!

Dash, The Sparrow

This past weekend, eight year old Dash proved worthy of his nick-name, again.  His impulsivity earned him the name, and his reputation for dashing off…quick as lightening.

This is a close up picture of the ground around our house this April:

The landing

The snow has just receded from this side of the house, leaving the debris from autumn exposed.

Here is a bigger picture (clearly, we need a paint job!), you can see the brick landscaping from the front of the house wrapping around toward the side.

The launching point

That window on the top?  That is Dash’s room. That’s where it happened.

Dash was playing outside and he found a toy that he wanted to put in his room.

Princess Buttercup and Sketch were watching Veggie Tales…oblivious.

I’d seen him go upstairs…running.

“What are you doing?” I ask.

“Putting my toy in my room!” he yells back.

Almost instantly, I hear it.  Kinda faint at first and then louder.

The scream.  (Such a short word, it really should take up more space.)

I run upstairs where I saw him go, but I am greeted with an open window.

I run back downstairs, baby inside balling up.

“Dash!!!”  I call out, panic-stricken. “I’m coming!”

And I run out the door toward the window, but Dash is coming to me. He got up and is walking.  He’s walking to me.

I hold him, thankful.  It could have been so much worse.

I hold him, thoughts disheveled, breathing hard.

I hold him, he’s clinging to me, sobbing. Hurt. Scared.

We come inside, and I tell him to sit on the couch and rest.

He goes upstairs. He wants to sleep. He has a headache, his back hurts. His “lungs don’t work” he says.

I tell him to come down and rest on the couch, while I call the doctor.

Turns out Dash had no broken bones, no broken ribs. The diagnosis:  mild concussion.

He was supposed to be really sore the next day or so.  When Saturday came, he complained a little in the morning.  But by the afternoon, we didn’t hear much about it.

He was ok, he was really ok!

We wondered, with autism changing the way he feels pain — how he’d bump into things as a small boy and not notice, his body bruised from the frequent collisions — if he was hurt more than it seemed.

But he was really, truly, fine. Not a bruise, not even a scratch on his body!

Here is a picture of him on Saturday afternoon:

Dash "driving" the Rescue Truck

It was his brothers birthday party, at the local Fire Station.  The kids got to climb in and ontop of the Fire & Rescue trucks.

Dash was fine, he was really fine!

When Dash and his twin sister were toddlers, I used to pray every. single. day. for big cushy angels to watch over them and to easy their landings when they’d fall.  Dash was wild, even then…diving off the back of couches, climbing…even before he walked!  I couldn’t keep them both safe & cared for by myself.  I had to feed one, I had to change the diaper of one, while the other was free to be wild…unprotected.  We did what we could–became masters of child-proofing–but some kids are just not safe! But, I was not alone. God was my Helper.

Apparently, that prayer has been hanging out there rising from the incense bowl to the face of God…waiting.  Answered more than once. Answered more often than it was prayed.

God is also worthy of His many names. One is not big enough to contain Him.

The God who is there.

The God who sees.

My Helper.

Protector.

When I didn’t see what happening, God did.

And he Rescued my wild son… and He Was There… underneath him, protecting him, just enough.

What a wonderful God!

Full of Grace & Mercy…Full of Love.

Glory to God!

Matthew 10: 29-31  Are not two sparrows sold for a penny? Yet not one of them will fall to the ground outside your Father’s care.  And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows.



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