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.


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!”



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.



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

Mommy, Did You Jump Out The Window Too?

“Mommy, Did you jump out the window, too?” Dash ( age 8 ) asked me as I half sat, half plopped on his bed to tuck him in. It was one of those questions that said so much more than it asked.  I was stiff and sore from what later we found to be Rheumatoid Arthritis.  For weeks I had been ever so slowly hobbling around the house.  This was Dash’s adorable way of asking me what was wrong.

Last April, Dash “threw himself” out the window on the second floor, so he could “fly” (You can read that story here).  That night he was extremely sore and stiff, and it hurt to move.  When he saw me stiff and sore too, he leaped to the thought that I must have also jumped out the window.

From the Merriam-Webster dictionary:  Empathy is “the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also : the capacity for this”

It was so sweet, the way he asked what was wrong. It really showed that he had been thinking about how I must be feeling if I was moving around the way he was when he jumped out the window.  Pretty good for a kid with autism, who is supposedly not able to empathize.

That certainly hasn’t been our experience. Sometimes they may not be able to express how they empathize…but that is a completely different matter from being able to empathize.

It brings me back to the time when we first learned about autism and all the deficits that went along with it.  The books we read about autism had parents talking about how their kids were becoming more real, more human, as they were “coming out” of autism. If they were becoming more real, does that mean they were less real, less human, before?  All kids, no matter how disabled, with what disability, are equally human…equally real, equally whole. Equally the way their Maker made them, in His image.  God made these kids the way they are, with all their special gifts and abilities, to serve a divine purpose.  We may not know what that purpose is in our life time, but we are guaranteed that there is a purpose and that these kids have a wonderful destiny.

Ephesians 2:10 “For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.”

 Genesis 1:27 “So God created human beings in his own image. In the image of God he created them; male and female he created them.”

Muller Moments

When we don’t behave as Sketch expects, he gets mad.  For example, when we are driving somewhere, Sketch (and Dash too, for that matter!) have strong opinions on what roads we should take to get there.  This caused such problems, since they never agreed on the correct road, that we instituted a rule:  All the time, the driver picks!  It took a few weeks of disappointments when we went our way, but it did pay off and we could have somewhat peaceful drives again.  Sketch continued to request the route he wanted, and we’d faithfully chime, “All the time the driver picks!”  He’d come to love to hear that response, because that’s what happens when he gives a direction.  He could count on it.

Well, one day we found out how much he counted on it.  Usually, we turn right onto his favorite road, but it was a day with heavy rain, and part of the road was not paved, so we opted to go a different route.  This time, as we approached the road we usually take, Sketch requested, “Go straight!”  Typically, we would have said, “All the time the driver picks” and turn right anyway, but on this day we did to go straight because of the rain.  Sketch reached near panic level when we went straight, even though that was the way he said he wanted to go.  A full fledge tantrum the rest of the way home, followed.  All because we didn’t do what he expected. We didn’t behave.

Recently, it seemed to me that God wasn’t behaving either, and I felt like having my own tantrum!  I thought there was some “rule” in the Bible about how many “big problems” God would allow a person to go though at one time?  I was still in the middle of finding out I was struck with Rheumatoid Arthritis.  Still had yet to see the Rheumatologist.  Still very crippled from the raging pain in my joints.  And then God allowed another “big problem”.  Mr. Incredible may loose his job!

God didn’t behave as I expected, but he did behave according to His promises.  He upheld every one, and our family as well.  He let me experience a taste of what George Muller experienced as he believed God for providing his every need, and every need of the orphanages he created.  I call these experiences, “Muller Moments”.

Here is what happened:

My “Mueller Moments” happened a couple months ago when my husband got word that there was trouble brewing with the parent company where he works.  That was Wednesday, September 28th.  By Friday morning, in an unfair and un-real set of events, he and all his coworkers were fired and the office was shut down.  This was the last day of the month, meaning we were also suddenly without health insurance.  To complicate matters, Cobra wasn’t even an option since the entire office was shut down, there was no insurance group to “Cobra” to.

There are no words to express the panic and stress that followed the news on Wednesday.  We were unable to sleep, literally sick to our stomachs….  I was still in the beginning of understanding my illness. How could He allow this to happen now?  How could He let this happen with a new baby to care & provide for?  God was not behaving the way I thought he should!

Thursday, Mr. Incredible went to work and cleared out his office, in expectation of the worst occurring.  I tried to recapture some of the sleep that I had missed the night before, so I took Polkadot to the changing table to give her a clean diaper before tucking her in.  As I looked at those diapers, seeing how many were left I worried about how we will buy diapers if we suddenly have no income.

I took Polkadot up to bed and attempt to sleep…my head was buzzing from the adrenalin that had been surging in my mind.  After about 40 minutes, I finally felt myself start to nod off to sleep.


Of course, the phone rings!  Frustrated to be woken, I answer the phone. It’s someone from our church. She wanted to know if we could use any size one diapers, since her son just outgrew them.

“Yes, we’d love to take them! Thank you so much!” I said.

Wasn’t I just worried about how we’d get diapers?  Did this really just happen?  I mean, I know God says not to worry, but it is really hard to apply that when fearing the very floor of your house is about to be ripped out from under your feet.

When Mr. Incredible was done packing up his personal things from his office, he came home…  Because of how badly the RA was raging through my joints, I needed his help to make dinner.  I didn’t really feel like eating, but was very grateful to have as much food in the house as we did.

I add the final touch to the dish I’d made, sprinkling cheese on top.  I secure the lid and let the heat melt the cheese.  The table has been cleared off, and I go to the cupboard to get the first plate to load a serving onto.


Who on earth could that be?

“Hello?” I answer the door with the blue plate resting in my arm.

“Hi, I’m Theresa, from ladies Bible study. I brought you a meal.” She had a still-hot, ready-to-eat meal in her hands!  I’d forgotten it is Thursday, and the people from my Bible study were bringing us meals since it was so painful and hard for me to cook.

“Thank you, very much!” I said as I flash back to a story I’d read about George Muller, who started orphanages in England, and would only ask God for the things he needed to start and maintain it.  He never asked a person for anything.  God always provided.  One time though, things got really tight:

“I hate to bother you , Mr. Muller, ” began the matron, “but it’s happened.  The children are all ready for breakfast and there is not a thing in the house to eat. What shall I tell them?”  

George stood up.  “I’ll take care of it. Just give me a minute,” he said. 

Before going to the dining room at Number One Orphan House, George walked out into the garden.  “Abigail, Abigail, come here, ” he called.

Abigail ran up to him. “What is it?” she asked.  

George reached down and took her hand.  “Come and see what God will do,”he said as he escorted her to the dining room.  

Inside they found three hundred children standing in neat rows behind their chairs.  Set on the table in front of each child were a plate, a mug , and a knife, fork, and spooon.  But there was no food whatsoever to be seen.  George watched as Abigail’s eyes grew wide with astonishment.  “But, where’s the food?” Abigail asked in a whisper. 

“God will supply,” George told her quietly, before he turned to address the children.  “there’s not much time. I don’t want any of you to be late for school, so let us pray,” he announced.  

As the children bowed their heads, George simply prayed, “Dear God, we thank you for what you are going to give us to eat.  Amen.”

George looked up and smiled at the children.  “You may be seated,” he said.  He had no idea at all where the food he had just prayed for would come from or how it would get to the orphanage.  He just knew God would not fail the children.  

A thunderous din filled the room as three hundred chairs were scuffed across the wooden floor.  Soon all three hundred children sat obediently in front of their empty plates.  

No sooner had the noise in the dining room subsided than there was a knock at the door.  George walked over and opened the door.  In the doorway stood the baker, holding a huge tray of delicious smelling bread. 

“Mr. Muller,” began the baker, “I couldn’t sleep last night.  I kept thinking that somehow you would need bread this morning and that I was supposed to get up and bake it for you.  So I got up at two o’clock and made three batches for you. I hope you can use it.”

George smiled broadly.  “God has blessed us through you this morning,” he said as he took the tray of bread from the baker.  

“There’s two more trays out in the cart,” said the baker.  “I’ll fetch them.”

Within minutes, the children were all eating freshly baked bread.  As they were enjoying it, there was a second knock at the door.  This time it was the milkman, who took off his hat and addressed George.  “I’m needing a little help, if you could, sir.  The wheel on my cart has broken, right outside your establishment.  I’ll have to lighten my load before I can fix it.  There’s ten full cans of milk on it.  Could you use them?”  Then looking at the orphans, sitting in neat rows,  he added, “Free of charge, of course.  Just send someone out to get them.  I’ll never fix the cart with all that weight on it.”  

George dispatched twenty of the older children to help, and soon they had the ten cans of milk stowed in the kitchen, where it was dispensed with a ladle.  There was enough milk for every child to have a mug full and enough left over for them all to have some in their tea at lunch.

Half an hour after George and Abigail had entered the dining room, three hundred orphans with full stomaches filed out.” pp 166-168 from George Muller, The Guardian of Bristol’s Orphans, by Janet & Geoff Benge

As the picture of this scene replayed in my mind, I stood in shock at the door with my empty plate.  I put the plate down and received the hot meal.  I turned to Mr. Incredible and said, “We just had a Muller Moment!”

Funny thing is, that we didn’t need a meal that night. We had one, literally ready to be dished out onto plates.  But God burned deep into my soul, that He is aware of what is happening, and He will provide. We can count on it. He even provided when we thought we’d be in need, but actually had plenty, so that we wouldn’t worry. So we would trust Him.  So I would know that He is my provider, not a job, not any person, but God alone.

Friday, it was official that everyone lost their jobs. I was sick, still, thinking about how badly things could turn out.  There was no way we could sell our house.  And just imagining having to move and find new in-home supports, new schools, new IEP’s, new teachers, new doctors, new specialists, all while Mr. Incredible (hopefully) starts a new job, was overwhelming!

Remembering George Muller, and how he would not worry, but believed God to provide for everything, thinking about how he prayed specificially for every detail of his needs, I decided that I was being called to do the same thing.

I went upstairs and prayed over every single bill we had, every upcoming expense, every need I was worrying about.  I was specific, to the point of praying for long sleeve onesies for Polkadot, and some jeans. The weather was getting colder and she only had summer clothes in 0-3 month size.  I asked God to provide for everything. I didn’t ask a person for anything, I didn’t mention what I had prayed for to anyone.

The next Tuesday our Bible study met again.  A friend greeted me with a gift bag, a belated baby-shower gift since she was in another state when Polkadot had her shower.

I could not believe my eyes when I opened that bag and saw some long sleeve onesies and a pair of jeans!  And, in 0-3 month size!  Most people buy up for a new baby, but she bought the exact size she needed right now.

God provides.  He promises it and tells us not to worry about anything. He knows how hard that is for us, but he also knows how good it is for us to not be anxious about anything.  So he promises us that He is our provider, and He always keeps his promises!

Everything has turned out ok.  Mr. Incredible was offered a temporary but full time (with benefits) job the same Friday that he lost his job.  We thought we had no insurance for October, but in some unknown strange set of events, the insurance we had with his previous company was reinstated, retroactive to October 1st and his new insurance started November 1st!  God took care of all the details.

As Beth Moore said in the video sessions for Believing God:  Sometimes God doesn’t move the mountain, sometimes he splits the mountain in half so we can walk through it.

That’s exactly what happened.  When there was no way, God made a way.

I don’t know about you, but I’m Believing God!

Sketch And Our Journey with Food Allergies

This week is Food Allergy Awareness Week.  So I’m dedicating this post to my youngest (for now) son Sketch, who has Autism, Adhd & Food Allergies.

Sketch and our journey with food allergies:

It seems like Sketch was born with eczema.  as an infant he had it all over his face, patches on his arms and legs, and thickly on the top of his feet.  He didn’t wear shoes for the first 2 summers, because the heat of the socks & shoes made his eczema too itchy to bear.

Sketch also had severe reflux, which made laying down flat painful for him, and the angle of the infant car seats made the reflux worse, a guarantee to spit up all over himself & the seat.  He stomach emptying problems that made the reflux worse so his food would stay in his tummy longer than it should, making it easier to spit up even hours after he ate.

Around the age of 10 months, the ear infections started.  They didn’t stop until he had tubes put in place at the age of 2.

Around the age of 11 months, we went to the Pediatric Gastroenterologist. The bloodwork came back showing elevated Ig-E levels, meaning he had allergies.  They couldn’t tell yet if it was to food or environmental things, but they wanted to do a test for EE (Eosinophilic esophagitis), that required to put him under anesthesia.  We decided to put that test off, because he was so sick all the time, we didn’t want to put him “under”.

At the same time the tubes were put in place (age 2), the asthma started. Severe asthma.  He spent much of the next two years on nebulizer treatments and steroids to control his breathing.  This was an extremely scary time! Little did we know, that some of those severe asthma attacks were likely his body going into anaphylactic shock.  I always kept a couple doses of steroids on hand, so we wouldn’t be caught after hours without any help.

Also around this time (between 18mo and 2 yrs) Sketch started self-limiting the foods he’d eat. He started out being the best eater in the house!  He would eat a variety of colors and textures with no problems at all.  At this point (he’s now 6) he will only eat a handful of foods that are brand-specific, and his protein is self-limited to yogurt. No meats, no vegetables (unless you count Lays Potato Chips, or all natural Cheetos (corn)),and one fruit (apples).

We thought once the ear infections were under control with the tubes, that he’d start eating better.  But, the opposite happened.

So we decided to have him tested for food allergies.

Although painful for everyone involved, it did reveal the cuprit.  This first test showed severe Egg allergy.  We were advised to wash all the dishes, pots/pans and counter top/tables with vinegar, to break down the egg protein. At this point Sketch refused to eat eggs (one of his previous favorite foods), so we were surprised that this was causing his problem. However, the rest of us ate eggs and the proteins on the plates were not being properly broken down by regular washing. We needed the vinegar to break it down further.  No eggs.  Do you know how many things have eggs in them?  Who’da thought Mayonnaise and Salad Dressings or French Vanilla Ice Cream could be life threatening!   No more bought baked goods…everything had to be made from scratch to avoid the egg.

We thought we were going to see great progress in Sketch’s health at this point, but we didn’t. He was still breaking out in eczema, having severe asthma attacks, and now hives.  The allergist did not think there were more food allergies so he refused to re-test.  We changed allergists at this point and re-did the food (and environmental) tests.  Sketch (now 3 1/2 years old)  tested positive (severe) to Eggs, mild to Peanuts and mild to Banana.  Do you know how many antihistamines have natural banana flavor in it???  And since Banana is not a major allergen, the FDA does not require it to be posted on a label.  So we had to call all these companies to ask. Yes, his Zyrtec has banana in it. Time to find a new antihistamine!

(Oh yeah, and that dog we had?  We trained her on peanut butter.  Gone is the dog.  Well, actually we had already given her away — long story for another post!  But, quick warning:  If a “service dog” is sold for way less $$ than other service dogs…she’s probably not a service dog at all!”)

After eliminating the Peanut & Banana along with the Egg, the Asthma finally got better.  He maybe needed the nebulizer once or twice through the next year, only when sick with bronchitis.  The next year was even better. We still give him his controller and albuterol treatments when needed (usually when he’s sick) but we have needed no nebulizer treatments or steroids for over a year!!

However… Sketch was still breaking out in full-body eczema and mild hives.  We suspected more food allergies and had him retested this past fall.  The recent results are Severe Egg and Severe Tree Nut allergies.  Peanuts and Banana’s no longer tested positive, but because Peanut allergies are so life-threatening, and tests are not 100% accurate, they said to continue to act as if he’s allergic to Peanuts.  He can now have Banana, although, he won’t eat it so who knows if he’d react???

We are sure that Sketch’s food aversion is related to all these allergies. He’s learned that food hurts. It’s a hard thing to unlearn or understand (some food hurts and some doesn’t), and will probably take many years of teaching and trying.  Meanwhile, his weight either drops or he remains the same as his height continues to tower.  We supplement with Udo’s 3-6-9 oil (hidden in yogurt) because he has zero Omega fatty acids in his diet. He’d deficient in Vitamin D (which we supplement) and many B vitamins, and fiber.  His calorie intake is insufficient.   Now we are trying to find supplemental drink mixes to boost his calories and nutrition since he refuses food. The challenge:  To get him to drink it!!!

How it effects us:

Fear.  Panic.  Will they remember at school?  What if someone doesn’t wash their hands?  What if someone doesn’t recognize one of the many hidden ingredients that contain egg?  How can we go to someone else’s house for a playdate, or a meal?  Will we ever go out to eat again?  Will I have time to bake everything allergen free for Sketch, who won’t even eat the food I make? 

It’s just awful.  And it is very real.  

This week Sketch was playing on the playground at school, picked up some allergen off the equipment (kids at lunch outside before this) and rubbed his eye.  His eyes swelled and hives started all over his face.  He became extremely tired (low blood pressure is a sign of pending anaphylactic shock).  The school caught it in time and gave him benadryl, called us to come get him.   He was just being a kid playing on a playground. It really shouldn’t be another thing we need to worry about, but it is!  

The best description for what it is like to have a child with severe food allergies, is this video from the Food Allergy Initiative:

To complicate it even more…add in the autism.  With the autism comes an inability, or reduced ability to communicate and understand language. Sketch can quote to you the foods he’s allergic to, but that won’t stop him from reaching out a the grocery store to grab a carton of eggs.  He doesn’t  “get it”.  And if he finally tries a new food, like toast, which is safe at home… will he understand that not all bread is safe because many are made with eggs?  Is he then more vulnerable to ingesting allergens?? The black & white-ness of the thinking with autism is a help and a hinderance. 

The Treasure in the tragedy: 

The fear & panic are very, very real, as is the danger.  

But the security handed to me by a loving God is bigger than that. 

He has proven to be watching over us and protecting us over and over again.  

His promise to protect us, His ability to see everything, along with His promise to  use everything for good, is what provides the anecdote to the anxiety.  

He knows where all those hidden allergens are, and He is able to protect my vulnerable child.  

And, when the reactions happen anyway, it isn’t because He wasn’t looking, He wasn’t on a break, snoozing away or  distracted.  He has a plan for that.  In the big picture, He has plans to use that for some very great good.  In that I can rest. (Well, at least until I forget and then I worry again until I remember)

Food Allergy Stats:

* A new study has found that one in 12 U.S. children has a food allergy and for 40% of these children, the allergy is life-threatening. 
* Injectible epinephrine is the only way to reverse anaphylaxis, a serious allergic reaction. 
* People with food allergies must carry epinephrine with them at all times. 
Proud Supporter of KFA profile picture* Oral ingestion is the most common and serious form of exposure to a food allergen. 
* Prior to eating, food labels should be read since ingredients can change at any time. 
* Scraping off or picking allergens off of food will not make it safe.
* Sharing utensils, beverages or food with a food-allergic child is not safe.
* Saliva from other people or pets can contain allergens and may cause an allergic reaction for a food-allergic child.

Provided by an organization that has provided incredible support and information to us, Kids With Food Allergies. http://www.kidswithfoodallergies.org

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!


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!


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!

The Colors of Space in the Craziness of Time

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 we never seem to have enough of…or do we?

One of the things I have noticed in the last few weeks (after keeping record of the blessings God pours down on me, unrestrained each day), is that there is actually a surprisingly large number of time-pockets, where things are calm and quiet. I know… dare I even say that? It may be snatched away!

But no, there always is time like this.  This White Space, lingering about waiting to be noticed…to be used, appreciated.

At our house, It looks something like this:

          (The beginning more resembles black space because that is how I feel when it happens…dark & anxious, frustrated and s-t-r-e-s-s-e-d out.)

Sketch gets home from school in a bad mood.  He asks for Veggie Tales, “King George and the Ducky” DVD and so I put it on, thinking it will calm him down.

As soon as it plays he asks for the “Introduction”.

There is no official introduction on that DVD.

Sketch says, “All done King George & the Ducky?” so I take the DVD out.

Sketch asks again for King George and I remind him we just had that on and he didn’t want it.

He asks again.

I give in, trying to avoid the impending tantrum and tell him this is the LAST time I’m putting it on.

The movie starts.  Sketch says “All Done King George? AHHH!”

And it happens.  (I suppose it had to happen, if not now then in 5 minutes..he just has to get it out of his system!)

He starts pushing me, throwing toys, trying to attack in any way.

I (eventually) get him in his room where he will calm down (after he pees on the floor, adding another to-do item to my list).

          (Now enters White Space).  There is nothing I can do at this point.  Sketch is throwing his fit and he is safe in his room.  History proves he will NOT calm down unless he is alone in his room.

But usually, at this point I will still be stressed out about the whole thing, wondering what is wrong? Why is he acting this way?  How long will it last this time? …What could I do differently?  etc.

But worrying steals away the t-i-m-e that has been handed to me to unwind, relax, enjoy.

I could stop myself once Sketch is safe and not be upset any longer.

I could be thankful for the break.  Lately when I have calmed down and refused to stew over what’s happened, that pocket of time has seemed to slow down.  It feels longer than it was.  I thank God for it…for the calm, for the space in time.

In some ways, I’m sure the time is actually longer because less is unnecessarily handed over to the black space.  But I am sure that those minutes of calm, when noticed…are actually longer.

Have you ever sat and watched a clock tick for a minute?  It seems to take forever!  But day after day those minutes tick away so fast we don’t know what happened to them.

Time slows down (at least our perception of it) when we notice.  When we are present in the moment.

Now I know there are those days when it seems like there is no White Space time…when tantrums and crisis come one after the other and there seems to be no end to it. The intensity can be so strong that it seems like the crisis has taken up way more time that it actually did… usually because of what we do with it in ourselves, during and after… the worry, the time sucked up stewing… the drainage of energy leading to less productive time after.

But the truth is that there is White Space coming. It always does, and once we recognize it and are grateful for it’s arrival, the time seems long…once noticed, time stalls a bit. Relief. Rest.

Even if the time-pocket of White Space is short… it is there.

Even if it is prematurely interrupted…it was. And, it will be again. We can always look forward to those pockets.

And I wonder, if there really is such a thing as black space.  I wonder if that black is really more like a dark purple… a royal color.  A color marking that God is there.  He promises to turn all things around for good (Romans 8:28).  He redeems everything, even what seems so dark, black to us.  If God is in it, using it for his purposes, then is it really black at all?

Taking the Cup

“Princess, can you be a big help for me and sweep this pile into the dustpan to put in the trash?”

“No, I’m busy reading and eating.  That’s boring!”

“Dash, can you be a big help for me and put this in the trash?”

“Yes, I can!” He bends down immediately and cleans it all up.

(At this point, those of you who are new to this blog and familiar with autism probably can guess which child is neurotypical, and which is on the spectrum!  Not that Dash doesn’t get a heafty case of the I- don’t- want- to’s here and there, but for the most part, he is a very helpful 8 year old boy! )

For most of us though, like the Princess… when we are asked to do something we don’t want to do, we complain about it or outright say “No, I’m busy!”.

It’s still Thursday here in Maine, and this is the day that Jesus had the last supper with his disciples.

“While they were eating, Jesus took bread, gave thanks and broke it…”  (Matthew 26:26)

I am (still) reading Ann Voskamps book, “One Thousand Gifts”.  She highlights this verse, the part where he “gave thanks”.  I didn’t really get the full impact of that before, but Jesus knew what God was asking him to do… to go through the pain and torture of the cross, and all that happened leading up to the cross.  Knowing this, he took the bread that was his body to be broken and he “gave thanks”.  Later in the garden of Gethsemane “he fell with his face to the ground and prayed, “My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.” (Matt 26:39) And He accepts the cup. He does what His Father asked of him.

It is simply amazing.  He did it because of his passionate love for us.  Because He knew it was the only way to save us.

Can you imagine if he had said he’s too busy?

How many times are we asked to do something we don’t want to do and we complain about it?

And how many times did we do what was asked, and later find out how it blessed people in ways we could have never imagined?

About 4 years ago, I knew that Sketch (then age 2) probably had autism like his big brother.  I was overwhelmed with the twins, Princess Buttercup & Dash (then age 4).  I was daily carpet cleaning Dash’s room for toileting on-purposes and dealing with all the insanity that came with a 4 year old with extreme ADHD and autism, and his twin sister, and a 2 year old who was always sick.

It was too much, I told God.  Too much to let Sketch have autism too!

And it was too much, and it still is too much.  But this was the cup that God was handing me.

I had clenched fists in my strong-willed “No!” to Him, initially.

But as He lovingly and graciously dealt with me, and as He opened my eyes to the fact that He could do so much to bless others through my children, through my too-much…

As He convinced me that He could do more good by allowing this than He could do by healing him…them…

As He adjusted my glasses to see all the others… The other families out there who also had too much, but didn’t have God…

He simultaneously caught and broke my heart.

How could they survive?  How could they go another day without knowing the One who loves them, will provide for them, who will guide them, who will move mountains for them and ultimately save them?

How could they live another day without the Promises that I cling to?  Without which, without Who… I would die?

And then I knew… I knew that Sketch would have autism too, and I knew that I had a task that I needed to “give thanks” for and drink it down.  To say, “Yet not as I will, but as you will.”

To somehow reach out to these Others and share my God with them.

It was a very hard lesson, one that I have to keep learning, keep reminding myself of, keep striving toward.  Keep re-agreeing to say “yes” to and to see not the too-much, but the blessings that He’s given through it.

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.


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.

Joy: Recognizing The Gifts Given In Autism

The daily stress of raising children on the autism spectrum with sensory processing problems, communication problems, behavioral issues, etc. leaves us drained.  Being worn out, and having repeated bad experiences…you know, the ones where you have to leave early because of a childs’ inability to cope (read: massive tantrum requiring physical removal of kicking & screaming child) leaves one hesitant to try those things again…and over time, chronic negativity sneaks it’s way in.

Soon eyes fail and the rose-colored glasses that emphasized the beauty in the moment become grayed…smudged, and the gifts are lost.  The moment is lost, leaving the fear of what may happen…the trauma of what did.

I started reading One Thousand Gifts by Ann Voskamp.  It is a wonderful book with a beautiful challenge:  to see the gifts God has filled the earth with, and to name them, to write them down.

Her challenge is to make a list of 1000 things you are thankful for.  Those things are really gifts from our Creator.

By remaining in the moment, looking for things to be thankful for; as we recognize the gifts, time slows.

Joy increases.

Negativity is hammered out by thanksgiving hammered in, resulting in increasing joy.

I have taken the challenge, and I hope you will too!  I have posted my first 20 gifts that relate directly to my children with autism/adhd.  I hope you are encouraged to find the gifts God has showered on you, and in the middle of it, discover joy.

Ephesians 5:19b-20 says, “Sing and make music in your heart to the Lord, always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ.”

My first Twenty:

1. A child melting like chocolate into my arms

2. Uncontrolled giggles from unknown reasons

3. Understanding surpassing anxiety

4. Siblings playing, pretending together

5. Children singing, instruments strumming, praises to God

6. Glimpses into their mysterious mind

7. The sweet smell of freshly shampood hair

8. Smiles peeking under umbrellas

9. Sing-songy voices telling stories unknown

10. Children slipping off to sleep

11. Messy fingers undiscovered through fun

12. Color spreading staining paper, as tiny fingers create

13. Bright shiny  crescent shaped eyes, wet with laughter

14. Moments of fully entering his world, as Jesus entered mine

15. Treasures glowing amidst the spectrummy storms

16. My boy, eyes beaming as he gazes into the eyes of another child

17. A shining face appearing amongst a rainbow of balls

18. Discovering genius amidst silence

19. Hands uncoordinated, striving hard to create shapes with scissors

20. Eyes casting Jesus as struggles are remedied, help received

I would love to hear your thoughts, and the gifts you have discovered!  Please let me know you were here with your comments!

« Older entries

%d bloggers like this: