I Found Myself Embracing Autism (Part 1)

Accepting autism when it’s your own child is hard. Embracing it is even harder. It pretty much requires divine intervention, especially when an additional child is being gripped by it.

The year is 2005.   Dash is precisely 2 years, 7 months old.  Although he won’t be officially diagnosed for a few more months, I know he has autism.

I take him to Dunkin Donuts.  His eyes miss mine as he looks somewhere else. Something out the window catches his attention (I assume) as I order donuts. He doesn’t notice the people; doesn’t acknowledge anyone in the store. We sit down, he stares out the window and spins his body in the bench seat.  I look for a highchair to help contain my bolting-prone toddler, but there are none.

“What a difference” I reflect.  “When I brought Princess Buttercup here early today, she waved at the cashier, pointed to what she wanted, interacted with people and interacted with me.  With Dash I feel like I am sitting here alone, but with a busy child beside me. Maybe he doesn’t like it here.”  I have a sudden urge to escape from the building.  Memories of working with people with disabilities start to flood my  mind.  “No.  It’ can’t be.”

“Let’s go, Dash.”

I carry him out.

He screams.

I am confused. He didn’t seem to be enjoying himself, didn’t eat the donut, didn’t interact with me, so why is he upset?

We go to the grocery store to grab a few things on the way home. I put Dash in the grocery cart and drive it over the bumpy pavement of the parking lot. Dash covers his ears.

“No!”

While we go down the freezer isle, he puts his fingers up in front of his face and wiggles them…stares at them wiggling back at him.  He never did that before (and he hasn’t done that since this day).

And I knew: my boy-twin has autism.

______________________

Crushed, I searched the internet.

What is the big deal about pointing anyway?  And who cares if he doesn’t have eye contact…like, ever.  In some cultures that is normal–but not ours.

What’s wrong with his sing-songy voice that has no words? He sounds like a Baby Einstein Puppet and I love that!

Yes he can’t sit still. Yes, he likes to bounce a lot. Yes he likes to squeeze through tight places.  I love that.  I love that his version of a “hug” is to lay behind me on the couch. What is wrong with that?  Nothing!  Nothing is wrong with that, but it’s listed here as a sign of Sensory Processing Disorder which is part of autism.

“Any loss of speech, babbling or social skills at any age”  I read. Oh.  Well, yes. He used to say “Thank you”, and “Good Job” and one time he even made a clear sentence, “Good Job, I ate the whole thing!” at a restaurant.   He started to do many skills that never quite completely manifested.  What I now refer to as “Peek-a-boo skills”.

The more red flags I learned about, the more it fit.

I try to sleep. I pray, “God, please do not let this be true!  Please, God!”

Silence.

______________________

I felt like I was loosing a child. Every time I saw him or his twin sister, I was reminded that things weren’t ever going to be the way I had imagined.

I didn’t know if I’d ever hear him speak; ever hear the word, “Mommy”.

I had always imagined him having friends, but now I have reason to fear that he won’t be able to make them.

I never thought I’d fear my child would not be invited to birthday parties, I mean that is just a part of childhood, right? Not.

Dreams were broken, shattered. All in an instant, the future was uncertain and scary.

I knew I did not want to deal with case managers and meetings and plans and reports. Not again. I had been their on the other side of the table. I’d heard the parents concerns, complaints, attempts at advocating. I’d seen it done well and not well. I did want either part.

But there I found myself.

I called a friend and told her what we were going through.  She said three words to me, that shook me to the core:

“God is holy.”

My thoughts ran: He doesn’t make mistakes. He made him the way that he is for a reason. He knew Dash has autism, and He didn’t do anything wrong in making him that way. He is holy.

____________________

Dash was the most hyper-active child I’ve ever seen. He was fast and impulsive, and relentless. He could terrorize a room faster than any other child. Ever.

He also was adorable, funny and cute.  Irresistible.

But he was hard, very hard, especially when it came to naps.

At age two he suddenly didn’t need them (not) and apparently he thought he didn’t need to sleep at night either. We were up until 2 am often trying to get him to sleep but he wanted to run from one end of the room to the other, crashing into walls. We had to watch him all. the. time. Even leaving him long enough to use the restroom left him enough time to run out the door, or hop into the sink, or dump the contents of the refrigerator. Exhaustion does not come close to describing what we experienced.

So when the twins were four and Sketch was two, and we started to see the signs, the red flags…well, I was just not ok with that. Not at all. But it was happening anyway. Apparently God wasn’t aware that this really was too much.

(TO BE CONTINUED!)

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School, School, School…

waiting for the bus

Sketch started the Second grade today.

First grade did not end well. We got an IEP progress report in Sketch’s book-bag, on the very last day of school that mentioned several things the teacher should have made us aware of ahead of time. We had a lot of questions that we could not ask because the school year was over.

Questions like: How many time-outs was he having, and why? If he was spending 70% of his day scripting and fidgeting, then when exactly was he doing school work? Why does the report say he is not able to do what he could do when he went into Kindergarten?  Why does he say, “Stop, Sketch! That’s weird. Go to time out!” all the time?

It took a few weeks to calm down enough to organize my thoughts and actually write a letter to the Special Ed director, but I did it. I sent it off in the mail the Friday before Independence Day.

At the end of July, we went to the Autism Society of Maine’s Family Retreat. One of the speakers there was from the Disability Rights Council, and she spoke on, of all things: Time-Outs, Seclusion and Restraints!

It turns out that in the beginning of June a new law was passed. A law that requires that restraint and seclusion be used only when the “student presents imminent risk of injury or harm to the student or others and where less intensive interventions have been unsuccessful.” (May 2012 issue of DRC News)

A windy morning!

It also requires that parents be notified when there is seclusion, and that if there are 3 seclusion events in the same calendar year, an IEP meeting must be held. (If you are interested, you can download and read the law here.)  This new law is very exciting because for the first time, Maine schools will be held accountable for the who, what, when, where, how, and why of restraining students and putting them in seclusion. For the first time, there will be data on how often this is happening.  My bet is, the number will be much lower now that there are consequences to using it.

However, there is a problem. Sketch likes time-outs. It’s his escape. He is very gifted in finding ways of getting one too. He will request one and if it isn’t given, he will act out so that he does get it. Time-outs on request of the student don’t count as seclusion under the law. That is, unless the teacher or other adult restricts him for exiting the time out, in which case, it does count as seclusion and the law applies.

So, we have a battle to fight, and an initial IEP meeting to be held and to have specifically written in it that we will be notified of all time-outs as well as seclusions. There are many other issues as well. His academics are well above his ability to cope in a typical classroom, so they have placed him in the “life skills” class for most of his day.  Here, my 7 year old Second Grader can play with preschool toys and watch Thomas the Train or Elmo’s World, and do the same. thing. year. after. year. after year.  And, he doesn’t bother anyone in a typical classroom. He doesn’t have to learn how to handle himself in a classroom. He doesn’t have to learn from his peers.  He can “stim” all day, and script all day, and be in his own little world all day long, and not learn a single useful thing.  The life skills class is the class where they place the students who they don’t expect to ever learn. So why try?

Needless to say, not much learning happened last year. As a matter of fact, his current progress report noted he was behind the first grade level in reading and math, but his IEP going in to Kindergarten noted he was at the second grade level at the time of entrance! The good thing about this is that we can document regression, and that should get some attention.

He really needs to be in a much smaller regular ed classroom, but our school does not have any classes like that, and it would cost a lot of money to create one.

It seems as if, in order to get anywhere with the school, we will have to hire a lawyer or we’ll have to give up on them again (we pulled the twins out for Kindergarten and first grade due to problems with the school), and homeschool him.  I would love to be able to homeschool him but I don’t see how that is a viable option at the moment.

So excited and chilly!

The whole mess reminds me of when Sketch’s big brother Dash was first diagnosed with autism, and we had to go through such a horrible fight with the State to get him any services at all.    We had been counting the days until CDS (Child Development Services, the early intervention branch of the Department of Education) would be out of our hair, so when Sketch showed signs of autism too, we didn’t want to have him diagnosed because it meant dealing with THEM again.

While in the midst of all the “fighting” for services that we went through for Dash, we spent a lot of time wondering: who is at the top of CDS, who is really in charge, who can make changes, who will listen to us, etc.  At the time, I was reading Esther:  A woman of strength and dignity, by Chuck Swindoll.  He was talking about a verse and applying it to King Xerxes but when I read it, I related it to the king of CDS and hit me between the eyes and held me through that time.

In the Lord’s hand the king’s heart is a stream of water that he channels toward all who please him.” Proverbs 21:1

And I remembered: the king only has authority because God gave it to him (or her).  They may think they are in control, but ultimately it is God, and he is who guides the heart, no matter how stone-like it may be.

And then one day, it happened. The Director of CDS called and told us they would give Dash 30 hours a week of preschool (he had been approved for only 15 hours a week). This meant his preschool also had been approved to offer full days to other children who needed it.

It was such wonderful news. The preschool we chose (and love dearly, to this day) was not the favored ABA type preschool but was one that took a developmental approach and relied a lot on DIR/Floortime. The director of CDS had a heavy bias against this preschool, but because of how well Dash (and other children there at the time) responded to it, they approved the school to offer full time programming.

And I knew that I knew, that I knew the God who was really the one at the top. He was the one I needed to talk to; He was the one who could make changes. He was the one who could soften a rock-hard heart. No matter how much they (or us, for that matter) think they are in control, the truth is that only One is in control. And He has a soft spot in his heart for the disabled, for the children, for those who can’t speak for themselves.

So again, I am reminded that ultimately, God has this all under control and is able to move in the hearts and minds of everyone involved to care for his child.  He’s done it before and he can do it again.  And He is; He is changing laws that will protect him, as I sit here trying to figure out what I need to do to help him.  He is already on the move.

Luke 14: 12-14 “Then Jesus said to his host, “When you give a luncheon or dinner, do not invite your friends, your brothers or sisters, your relatives, or your rich neighbors; if you do, they may invite you back and so you will be repaid. But when you give a banquet, invite the poor, the crippled, the lame, the blind, and you will be blessed. Although they cannot repay you, you will be repaid at the resurrection of the righteous.”

But What About Dash: How to explain Jesus to children on the Autism Spectrum

Last week a friend of mine asked me a question. She works for a preschool and also teaches Sunday School, and she has several kids with autism in that mix.

Her question was, “How in the world have you and Mr. Incredible taught your boys about God? How can I as a Sunday School teacher help the children in my class who are autistic gain an understanding of Jesus?”

The question is a hard one to answer, given that people with autism are visual and concrete. They like to SEE, and they like literal.  How does “Jesus lives in your heart” come across to them? I can only imagine.

While thinking about this, I was reminded of when Princess Buttercup was around 3 1/2 years old, and she understood about as much as any three year old that we all sin and need Jesus to take that away for us, and to accept Him into our hearts. It was an amazing night, the night she accepted Jesus.

I remember the following Sunday as if it is the present, not confined by time passed.

We are at church, standing in worship and I am heavily burdened with the thought, “But, what about Dash?”   How will I ever be able to explain God or Jesus to him?  He can’t “see” Jesus, he couldn’t possibly understand the concept of three persons in one, and those being invisible and living in your heart? It makes no sense. How will He ever understand?”

And God meets me right there. Stops me in my thinking tracks and says with a thunderous voice in my heart, “I made him the way he is.  I know how to reach him.”

It struck straight to my core. I didn’t have to figure it all out. God already has.

The captain crashes

One of many unusual places we found him alseep

Dash has always had sleeping problems, as is common for children with ASD’s.

At the age of 2 years 4month, he broke; he gave up his nap in the day and he gave up sleeping at night.

He was suddenly not able to calm his body down.  He would run from one end of his room to the other and crash into the wall and then reverse direction and repeat. Back and forth he’d go until 2am or later, when his body would become so exhausted it could no longer comply with his mind and he would collapse into required sleep.  This is when we “knew” something was wrong and started delving into researching what this could be.

Eventually we discovered Melatonin (Benadryl did not work) and we could finally get him to sleep at a reasonable time–compared to 2am, not reasonable for most 2 year olds!  He’d still often wake up in the night and play and just stay awake.  He slept anywhere between 2 and 6 hours a night.

So when I heard him up in the middle of the night one night shortly after God convinced me that He could reach him, I wasn’t too surprised.

I was surprised, however, to hear what I heard.

I imagine he was standing on his bed, but I don’t know this as the door was closed and I did not interrupt what was going on.  I felt like I was standing on Holy ground.

At the top of his lungs, he was singing, “I stand amazed in the presence, of Jesus the Nazarene, and wonder how he could love me, a sinner condemned unclean.” You can listen to the song here: I Stand Amazed (How Marvelous)

I wonder to this day, what happened in that room.   When I am in Heaven and can ask such questions, I fully expect to find out that Jesus was there; in his room. And Dash stood amazed in his presence. Goosebumps rise and I quiver just thinking about it.

I imagine he was singing the words to the song that explained what was happening at the time. He would often use phrases from songs to say what he didn’t have words for. He didn’t know how to comment, but what he’d see would remind him of a song, so he’d sing it.  Just like the time when I was pouring berry juice concentrate that was a deep dark blue-purple.  Instead of saying, “Wow, that sure is blue!” , he started singing, “I’m so Blue-ue-ue Blue-ue-ue Blue-ue-ue-Ue, I’m so Blue I don’t know what to do!” (from Madame Blueberry, VeggieTales)

Dash has always loved music.  Good music, like the kind we like (insert snicker).

He could sing before he could say words, which wasn’t until he was well over 3 years old.  Every night we all cuddle together on the couch and watch music videos of our favorite artists. We listen to music in the car, in the house. All the time.

Music has a way of reaching us where plain words to not; music can bypass the brain and go straight to the heart.

And God used that, to reach Dash.  He used music to bypass the literal, the visual and penetrate his soul.

_____________________________________________

So back to the original question:  How do we teach the boys about Jesus; how do you teach children with autism about God?

Taking apart what has happened so far in Dash’s 9 year old life, I guess my answer would be mostly to pray for God to reveal himself in a way that he can understand; to reach him.  Next to that, I would recommend using visual tools like felt boards, and pray. And I would recommend using music to teach, and to pray.

Basically, I don’t think I did anything but provide an atmosphere that made it easier for them (Dash, and Sketch who is 7 years old and also has autism) to understand and then let God reach them, his way. No one is too hard for God to reach.  And it may not be “hard” at all, just different. Some people with ASD’s have a more-than-usual closeness to God, they are very aware of his presence.

All this being said, I encourage you to remember that we don’t have to figure it all out. God already has. Our best tool is prayer.

2 Cor 10:4  “The weapons we fight with are not the weapons of the world. On the contrary, they have divine power to demolish strongholds.”

To us mere neuro-typical types, autism can seem like a stronghold. I think this is because we don’t understand it all.  But God does.  And we are called to pray, which holds divine power to break though…to reach.

2 Chronicles 7:14-15 

“if my people, who are called by my name, will humble themselves and pray and seek my face and turn from their wicked ways, then I will hear from heaven, and I will forgive their sin and will heal their land.  Now my eyes will be open and my ears attentive to the prayers offered in this place.

 

Mirror : rorriM

“Sketch, put your hands up like me!”

He raises his hands with a puzzled expression on his face.

I move my hands slowly.  He follows.  “Good, Robbie!  Do what I do! Follow me!”

He follows. I make a quick movement up to surprise him. He giggles.

“All done? No!” and he runs off.

But, he did it with me for a few minutes and I know he CAN do it.  I had a few minutes of uninterrupted engagement.  No small victory there!

This is one of the  hand games that I’ve been playing with Sketch.  It is similar to Patty Cake, but I call it Mirroring.

I have been playing hand games like this and Patty Cake with Sketch the past few weeks.

Games like this are great because he has to pay attention to what I’m doing;  mirror me, follow me, keep pace with me, anticipate my next move.  I put my hands up, and Sketch puts up his in the same way. I move my hand (or hands) and he is to follow as closely as he can to what I do so he is my mirror image.  It is really quite fun and there are all kinds of opportunity to throw wrenches into the game, like shooting your hand up high without notice.

Sketch likes playing it for a short time.  He thought it was funny when I’d do something unexpected and he’d have to adjust to it. He wasn’t perfect at it by a long stretch, but he tried. And in order to try, he has to remain engaged and focused.

I love it when he’s engaged and focused.  He has so much to offer: Big smiles, joyful eyes, excitement uncontainable. And, he is really, really, bright.  He does not show this to most people, but that boy is really smart.

To play these “mirroring” games, we have to be co-regulated.  Co-regulation reminds me of the Chris Tomlin song, “Where you go I go, When you move I’ll move, In this live I loose, I will follow you”  That is co-regulation in a nutshell.  It is changing your pace to meet someone else’s pace (and visa-versa).

If you are walking with someone and you are far ahead or far behind them, you have to adjust your pace to match your partners in order to being walking WITH them.  Most of us do that easily, and when we are talking and don’t get a response we’d pause and let the other person catch up.  With ASD kids, they may not notice.  They need to practice this skill to develop it.

I could use some work in that department as well.  I don’t know about you, but I find it pretty easy to not go when God says it’s time to go, especially if I’m not expecting a move.  It’s that old fear-of-the-unknown creeping up again.  It’s quite silly of me, because God promises me that he will do more than I can ever ask or imagine!  There is nothing to be afraid of in that.

At the same time, I find it far too easy to move on before He says it’s time to move on.  Knowing, and being excited for what IS coming up, but having to wait for God to give the green light, can be very difficult as well!

If only we could mirror Jesus as easily as playing a game of patty-cake.  I guess the trick is to keep going back and looking in the mirror (the Word of God) to get direction, and to follow it.

James 1:23-24 “Anyone who listens to the word but does not do what it says is like someone who looks at his face in a mirror and, after looking at himself, goes away and immediately forgets what he looks like.”

The other good thing about the mirror analogy, is that one day, we will look in the mirror, and we will not see just an imperfect reflection as we do now, but we will see Him.  Not in a mirror, but face to face.  I can’t wait for that day–the day of 100% engagement with Jesus.

1 Cor 12:13 “For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.”

How about you? Are you engaged with God? Do you find it easy or hard to be co-regulated or mirror Jesus?  I’d love to hear your thoughts in the comment section below.

On the Playground: The Power of Encouragement

Sketch digging sand

“Hi, do you want to play with me?” She asks, watching Sketch play with the tractor in the sandbox.  She couldn’t have been more than four years old.

He continues to dig up sand and pour it into piles.

“Hi!, You forgot something! Your shoes!”  She points to them, still at the end of the slide, right where he left them.

Still no response.  She goes over to him and taps him on his shoulder. “Hello!  Do you want to play with me?”

At this point, not sure how Sketch would react to this, I walk over to him with Polkadot riding on my hip.

She climbs up the ladder to the slide.  Polkadot admires her, wishing she could play.

“Ah Dat?” She says, pointing at the little girl.

Sketch continues digging up sand.

“Look Sketch, this little girl wants to slide with you.”  He follows my point and looks up at her.

“See the double slide?  You can race with her just like you do at the Bounce Zone!  Do you want to slide with her?”

“Yes!” He says.

Yeah! He finally wants to play with another child!

He climbs up the stairs, slowly.  Very slowly.  Scripting all the way, his favorite show which takes place on a playset similar to this one.

He reaches the top, turns around and slides down the opposite slide, paying no attention at all to the little girl.

My heart aches her, poor things is trying so hard, so persistently encouraging my boy to play.

She isn’t put off though, she doesn’t give up trying to play with Sketch.

The girls mom comes and takes her back to the soccer game in the field next door.

Sketch continues playing by himself, happily talking and signing to himself.

I swing with Polkadot, and watch Sketch play by himself.

A couple minutes later, I hear footsteps of the little girl pitter-pattering heavily behind us, getting closer and closer.

“I SAW YOU” she yells to Sketch, “I was watching you!  Do you want to slide with me?”

I hold back laughter. This girl is not going to give up!  I wish I could take her home with me!  How good she would be for Sketch, on his case constantly!

I already have this girls future planned out; she’ll be a Special Ed Director at a good school, and she will never give up, even with the hardest kid to reach.  She has the gift of encouragement and she is not afraid to use it!

And neither should we.  We all need encouragers like this girl in our lives, and we all need to be that kind of encourager to others.

How great would it be if we didn’t give up, but persisted in spurring each other on?

If we were being built up by others every day, how much better would our days be? And what a gift to be able to encourage someone else!

I think we need more people to take after the example of this little girl.  More who say, “Hey! I was watching you!” and encourages us along in our journey.

Just today at church, someone did this very thing for me, and it made me want to finish this story that I’d started last week.

Encouragement is a powerful thing.

1 Thessalonians 5:8-11 “But since we belong to the day, let us be sober, putting on faith and love as a breastplate, and the hope of salvation as a helmet. For God did not appoint us to suffer wrath but to receive salvation through our Lord Jesus Christ. He died for us so that, whether we are awake or asleep, we may live together with him. Therefore encourage one another and build each other up, just as in fact you are doing. (Italics added)

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.

 

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 summer is slowly becoming longer and longer. The first month seemed to go by quickly, due to the newness of not being in school.  But now that boredom has set in, Sketch has taken to running away when he is outside, and throwing tantrums when he is inside.  The days are getting longer, one by one.

I have been thinking about this post I wrote last year, as it really applies again (more so than normal) now. I need to remember to notice the time that I have that is wonderful. To be present in the moment, and grateful for what it holds.

Treasures In The Dust

From Wikipedia, the free encyclopedia:
White space may refer to:
  • White space (visual arts), portions of a page left unmarked
    • Space (punctuation), the space between two words of text
  • Whitespace character, a computer character for the space between words
    • whitespace characters, a character class in regular expressions
  • White spaces (radio), allocated but locally unused radio frequencies
  • White space (management), an area where no one is responsible
  • Whitespace (programming language), an esoteric programming language”

I have been thinking about White Space lately, but not the kind mentioned above.

I’ve been thinking of the kind of White Space that is more like White Noise–that background static that either drives you crazy or that is so common you don’t notice it anymore…or maybe you love White Noise because it drowns out some other sounds you would rather not hear.

The White Space I am writing about relates to T-I-M-E.

That four letter word…

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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.

 

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