The First Way is "The Right Way."

Today I took Jonathan to refill his ADHD and anxiety medications. This is the same building we go to once a week for counseling. The very first time we went to the building we stood at the bottom of a split staircase. There was one office door at the top of the stairs which went to the left. A walkway and a couple of doors were at the top of the stairs which went to the right. I took a guess and went up the stairs to the left since the directions said their office was behind a certain store. I guessed wrong. No problem because the walkway was connected, although we had to squeeze through the security railing to get to other walkway.

Now every time we go to the doctor or the counselor, Jonathan takes the stairs to the left and squeezes through the security railing to continue down the walkway to the correct door. I, of course, take the stairs which split to the right. Jonathan doesn't understand why I go this way. I tried to explain to him that we went the "wrong way" the first time. Now that I know better, I go the "right way" each time. He, of course, goes the same way that he went the first time because this is the "right way."

It reminds me of a friend whose son walked around the opened square pattern on my main floor until he found the bathroom. Now he always goes around the square to use the bathroom even though he'd get there faster by making one left turn instead of three right turns.

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Saturday Night Torture

Jonathan thinks Saturday nights are for torturing him. That's because it is the night that I make him wash his hair. I'd like to make him wash his hair more often than once a week, but then I'd be torturing myself and everyone else in the family.

I'm so blessed to have wonderful extended family members and friends. Those who happen to be in our house on Saturday nights get to experience the crying and begging Jonathan starts with as we remind him that it is Saturday and there is church in the morning. He knows what's next. The way he carries on it reminds me of the phrase in the bible "weeping and gnashing of teeth." I imagine hell would be either those who feel like Jonathan having to do personal grooming or their families members having to experience these Jonathans being cleaned for eternity.

Because the next step is actually getting him in the bath tub. Lately he doesn't mind getting wet. But as soon as you apply the shampoo and start rubbing it in he starts screaming as if you are ripping his arms and legs off. The blood curdling screams! I'm so thankful we live on a large wooded lot so our neighbors can't hear it. I'm so lucky that my family and regular visitors in our house don't pick up the phone and call 911.

Last week my husband was in the basement when I was washing Jonathan's hair two floors up. When Scott came up from the basement, he said "I take it Jonathan's bath is done since I heard him screaming."

Thank you, Lord, that we can laugh about this for all except the 15 minutes a week we're actually in the middle of it. Thank you, Lord, for my family and all our family's friends who haven't turned us over to Social Services.

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Our "Tigger"

My "Tigger"

I'm not sure about the copyrights for posting Tigger's song. So I'll error on the side of caution and only link to it. The Tigger song is a perfect description of a younger Jonathan. In fact, Jonathan chose to be Tigger two years in a row for Halloween. I can't put my hands on my photos of him as Tigger, but I do have this one, which is also typical.

Somewhere early on an Occupational Therapist told us to get a small trampoline for him. We did and we carry it around with us when we vacation. Otherwise he would be jumping on the beds. This little trampoline is a life saver in the winter months too. However, when the weather is "just right" Jonathan lives outside on the bigger trampoline.

During the school year there are weeks when he won't even make it into the house from the bus. He'll go straight to the trampoline and bounce and do flips for long periods of time. The trampoline has been a neighborhood magnet, especially when the kids were younger and we'd let a number of them on at a time. Now that they are getting older, we only let one or two on depending upon their weight.

I have to admit I'm a little sad to see that Tigger has all but disappeared and the trampoline has lost its appeal. I think it is one of the drawbacks of Jonathan being on an ADHD medication. While, I like the fact that he's a lot calmer throughout the day, I wouldn't mind seeing Tigger every once in awhile.

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Just wanting to survive

Okay, I'm embarrassed to admit that the main person melting down this week was me, not Jonathan. Although, he did have his share of mini-meltdowns which precipitated mine. The first week of school is hard because it is a major "transition." For those who don't have autistic children, "transitions" are the period of time between moving from one activity to another. In this case, the transition is moving from a summer schedule to a school schedule.

The experts in autism suggest the way to avoid this conflict is to keep the same schedule year round. Sounds good in theory; however, I'm not a morning person. So I enjoy getting up later during the summer months. And Jonathan doesn't sleep. He stopped napping early in life. He's the only one in the family who doesn't fall asleep while traveling in the car. While we make him be in his room with lights off by 9:00 p.m. We'll hear him moving around until after 11:00 p.m. If Jonathan every falls asleep in the middle of the day or goes up to his room to his bed, I make a call to the doctor. Sleeping is the first sign that he's sick.

Scott and I taught him early in life to read a book, listen to his MP3 player or quietly entertain himself if he wakes up in the middle of the night. Otherwise, Jonathan would be in our room every half hour to announce he was still awake. We are so fortunate that he will entertain himself quietly and he doesn't do anything harmful to himself or others. I've read and heard horror stories about parents of autistic children who have to sleep outside their child's room lest the child escape to tear up the house or do dangerous things.

We know he's up because we'll find open books, toys, lights on, etc. More recently I've found food and drink evidence all over his room. I found about a dozen bags of unopened fruit flavored snacks under his pillow. When I asked him about them, he said he gets hungry in the middle of the night. Since his psychiatrist expressed concern over weight loss the last visit, I'm not sure how to address this new behavior of hiding food in his room.

This week, I've been the one missing out on sleep. And it is all my own fault. I'm naturally a night owl. So when my husband travels I tend to stay up way too long. And yet, I still had to be up earlier than the last few months to get the kids on the bus.

So, my tolerance is lower due to self-imposed sleep depravation. Jonathan's tolerance is lower because his routine has been disrupted by his father on travel and school starting again. To add to his issues, he's on a bus with too many children making too much noise. He's in a school building with over 600 students and about 100 staff, with lots of noise, activity, and distracting smells. (When you start asking him what "bothers him at school" he has a long and interesting list. The custodians rolling the big trash can down the hallway, The air conditioner blowing. The smell of waffles and peas from the cafeteria. The indentation in his chair. The boy humming everyday they do "silent work" at their desk. The sound of the fire alarm, etc.)

He's melting down because he has to start homework. He's melting down because he has to be up, dressed, medicated, fed and out the door in order to catch the bus. He's melting down because he had to read 30 minutes but only got to play 20 minutes....

I'm melting down because my husband is not home and I'm filling out (in triplicate) Emergency forms and acknowledgment of reading all the school's policies on cell phones, bus etiquette, Internet, photo release, insurance, etc. I'm writing checks for lunches, parking permits, assignment books and practice shirts. But I'm mostly melting down because my children are all tired and cranky and fighting with each other and fighting with me.

Today someone asked Jonathan what his goal for the school year was. "To survive," he said.

That's mine too. That and acting more like the parent and less like the children.

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Mom's Comment

Below I posted one of Jonathan's writing pieces. He hates to write. He actually typed this on my mom's Quick Pro Pad (like an AlphaSmart used in classrooms for kids who have difficulty writing). I only edited his writing to correct his very creative spelling. I had to ask him to translate some words for me.

Reading and writing are his two least favorite subjects. It's a major battle every night and through the summer to get him to do either or both. These two subjects don't come naturally to him. He's only now beginning to articulate that he doesn't think in words. He thinks in pictures and numbers. His private counselor asked him to show her how he thinks. He told her that she'd need a bigger dry erase board in her office. She got one. He's only given her one brief lesson but it was eye-opening to me. He wrote down a series of numbers and then assigned a word value to them. I don't recall the actual numbers and words, but it was something like, "63 =I have to go to the bathroom." "79=I'm hungry"

Remember in an earlier blog entry I wrote that he'd answer our questions with numbers? And I told you that as he got older, we began to realize when he gave us a number it was because he didn't have the vocabulary to answer? So when we got a number answer, we'd provide him with possible words.

Now it's starting to make sense.

For three years he could not remember the words "lunch" or "dinner." This was a problem since he insisted on praying for our meals. Every meal it was the same, "Dear Lord, thank you for our...." Long pause. We'd give him the correct word. My oldest son found this extremely annoying. "He knows the word! He's just messing with us! Make him stop!"

We talked to the neuro-psychologist about it. He said, "Jonathan's brain is like a California garage." I'd never heard that expression before, so it didn't mean anything to me. I asked for clarification. "Jonathan's garage (brain) is so full that he can't park any cars in it. And when he gets something new he has to find a nook or cranny for it. Sometimes he files it in a place that he can't remember or it's not easily accessible."

One night, after learning more about "visual-spatial" giftedness (people who can visualize, see 3-D, fill in the missing picture, etc.) and thinking about the doctor's comments, I said to Jonathan. "I want you to pull up the word 'dinner' in your brain." He said, "Okay." I asked, "Can you see it?" He said he could. "I want you to move that word to the correct place in your brain." He sat there for a few minutes. I could almost see on his face the little sand timer like our computer displays when it's processing. "Done," he said.

For about a year he didn't hesitate when he thanked God for our dinner. Every once in awhile, the word gets lost again and we have to stop and have him refile that word into the correct place.

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Guest Blogger - Jonathan!

Field Trip
I went to Flag Ponds Park. I saw 6 crabs and 1 dead crab. It was a nice field trip. We measured the beach in centimeters! I went into the water and did not get wet because I wore special overalls with boots connected to them!! Then we had lunch and went home. I went by bus. My seat was SO squished. I sat with my friends Alex and Cristian. My lunch was grapes, peanut butter crackers, Chex mix and a juice bag. The whole point was to see if flag ponds park was a good home for terrapins. Guess what. IT WAS enough food!!!!!!! Enough nesting area, good water for them (brackish water). Not many predators. It is perfect for them. If I had to grade it and the highest I can go is 700 I would give it a 620!! If I were a female terrapin (I do not want to be one) I hope I’m born there. If you are wondering why it is because you go back to visit to lay your eggs.

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First Day Back to School

Today was a day of mixed emotions. After I put Jonathan and Faith on the bus, I came home and found myself alternating between two songs. One was the traditional Christmas song, but I only sang the same phrase over and over again, "It's the most wonderful time of the year." The other one was "This is the day, this is the day, that the Lord has made, that the Lord has made. I will rejoice, I will rejoice and be glad in it...."

Today was the first day that I had to reclaim my house back. By that I mean, I can remove all toys, books, drawings, McDonald toys, craft projects, etc. from my main floor. The best part of this is that when I come back down from my upstairs office one hour later, the main floor will be as pristine as I was when I went up. When I walk into the great room, I won't be blasted out by SpongeBob, Hannah Montana, or iCarly.

Tomorrow, I start in the doorways of their rooms with a green garbage bag and don't stop until I make it to the other side of the room. I'll restock the lunchbox drawer, the snack drawer and drinks and my supply will last longer than my next trip to the store. I clean out the pantry, the spice cabinet, and the medicine cabinet so things stop tumbling out when I open them. And as I'm cleaning, I'm keeping my list handy. This list is what the kids will be doing this weekend. Pick up all the snack and beverage trash in the yard, return all bikes and scooters to the shed, line up all shoes or place them in the cubby hole in the garage....

So getting my house back to clean and organized greatly reduces my stress level which is necessary....

Because when the kids got off the bus the second part of my day started. The one which was not filled with song. Instead it was filled with silent and desperate prayers to my Lord.

"Lord, I know everyone is tired because we haven't had a long intense day in three months. But if she doesn't stop whining at me, I think I'm going to lose it! Please help me to be patient, even though I'm tired too."

"Lord, I know getting back into the school routine is going to be difficult on everyone. Please help me to press through and do what is right and not what is convenient and easy." I'm uttering under my breath as I'm dragging all of us into the living room for "Drop Everything and Read" time. It's the 20-30 minutes recommended by "the experts" to help kids be successful in school.

I think this year Jonathan won't be constantly tested on his "reading fluency." Between preschool and third grade the students are expected to correctly read so many words a minute. (Don't get me started on what I think about the school system's position on grading the kids based upon how well they've mastered the tool instead of how well they've mastered the skill the tool is being used to measure. I'll save that for another blog post.) So he only has to read, but not out loud. Faith is still in that range where she's graded on her mastery of the tool. So someone has to listen to her read out loud for 30 minutes.

So after dinner, dessert and a little bit of time to unwind, I called them into the room to read. Oh, the weeping and gnashing of teeth. Jonathan declares through his tears, "Whoever invented reading needs to be taken out to the middle of the street and shot!" (For those of you who don't know, this is Jonathan's solution to everything he doesn't like. So the middle of our street is figuratively a mound of decaying bodies for those who invented things like hair brushing, nail cutting, baths, shampoo, BCRs (brief constructed response, which we used to call "short answer" in my day), homework, social rules, chores, etc.)

I know I really need to apply behavior modification to get him to stop saying this (and other equally inappropriate things), but I'm still trying to modify his behavior to do all the things that he wants to shoot the people for inventing.

While getting them to brush their teeth and go to their rooms for "quiet time" went surprisingly without a problem, I can still hear Jonathan is awake one hour later. At least he's in his room with the lights out. That's a small victory.

Thank you, Lord, that days like today are for growing me into a better person and mom. Thank you that even when I fail, you are here, eager to forgive me, pull me back to my feet and send me out again. Thank you for the most wonderful day and the most difficult day of the year!"

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Purple Man

I don't recall when Purple Man made his first appearance. I'm pretty sure it was between Jonathan's fourth and fifth year of life. One of the common characteristics of Asperger's Syndrome is that the person with this diagnosis can be known for perseverating (stuck on)a topic. I've heard of children perseverating on train schedules, WWI battleships, King Henry VIII's wives, baseball statistics, etc. When people, familiar with Asperger's Syndrome, asked me about Jonathan's perserveration, I would say that he either didn't have one, or that his focused changed.

Jonathan's third grade teacher informed me that I was wrong. In fact, Jonathan does have a perserveration, it's just not in a "real" subject. Jonathan created his own comic book hero a number of years ago. Purple Man is his name. He has "two side kicks - Perfekto and Purple." Purple Man wears a hat which had been Faith's baby baseball cap complete with a big purple bow on the back. Only, Purple Man doesn't tie the bow, instead the thick ribbons flap freely behind his head. Purple Man's cape has been converted from Bibleman's cape. It was turned over and black electrical tape has been placed in a parallel lined pattern. Perfekto looks like a Ninja dressed in black. Purple, is "just like Purple Man, but only two inches tall and without the flaps on his hat." The arch enemy is Snakehair. He has hair which consists of a real snake with two heads, one at each end, around the enemy's ears. There is another enemy named Apple Man, but I'm not too familiar with him.

Since Purple Man's first appearance in a stick figure comic strip, Purple Man has become a marketer's dream. Jonathan has created a Purple Man amusement park, Purple Man Monopoly, Purple Man trading cards, Purple Man book, Purple Man Halloween costume, Purple Man dishes, etc.

Purple Man's humor reminds me of Calvin and Hobbs, Jonathan's favorite comic book. As soon as I can figure out why my printer won't scan, I'm going to scan some "Best of Purple Man" comic trips. In the meantime, I hope you enjoy the Purple Man Halloween costume. He's been trick or treating in our neighborhood for three years now.

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Bedtime prayer

Jonathan's bedtime prayer evolved over time. The amazing thing about his prayer is that each new piece he added was as a result of his understanding of the bible story Scott read to him. This further confirms, in my mind, that Jonathan has an unusual sense of the Holy Spirit working in and through his life. This is the prayer Jonathan prays every night:

"Dear Lord. Thank you for this day. Help me to remember the day you died on the cross for my sins. Help me to hear you. Forgive me for being bad. Help me to be good. In Jesus' name. Amen."

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Heightened Senses

I believe one of the benefits of Jonathan's sensory issues is that he has a keener sense of the Holy Spirit working in and around him. I prayed that Jonathan would be like Apostle Paul, and train up churches, pastors and new believers in their faith in a risen Jesus Christ. (I actually prayed for a mini-ministry team in my children. Josh would introduce people to the promises of God. Jonathan would help them to grow in their understanding of God. Faith would intercede (pray) throughout the process...beginning, middle, and end. She'd pray for her brothers. She'd pray for the people with whom her brothers were engaged.)

Early on Jonathan showed signs he was going to be prayer in the family. Shortly after he started talking, between 27 months and three years old, he insisted in taking over the prayer for the meal. He prays after Scott reads he and Faith the bedtime bible story. On his own, he prayed to ask Jesus into his life. On his own, he prayed that Jesus would enter Faith's life. And his prayers are simple and yet profound.

I've decided to attempt to keep my blog entries a little shorter. Today I'll share how he asked Jesus into his heart. You'll have to come back in the future to find out about his simple but profound bedtime prayer.

When he was four, he began asking a lot of questions about God and Jesus. Most of these questions came during the drive to his afternoon preschool class. At the end of every conversation I would offer, "Do you want to ask Jesus into your heart?" And for months he would answer, "Not today." I'd say, "Okay, when you are ready, let me know."

One day we were driving to class and he asked about what separated us from God in the first place. (He didn't use those words, but that was the gist of what he was asking). I explained about Adam and Eve eating the forbidden fruit in the garden and how their real sin was in doubting that the Lord had given them everything they needed and in their desire to be like God. (Again not in those words. To be honest, I don't really recall the words I used. I just remember giving the answer in four year old terms.)

This time I didn't ask Jonathan if he wanted to pray. I don't recall why. However, I was stunned when I heard in the backseat, "Dear Lord, please put Jesus in my heart." Later than evening, Scott sat down and talked to Jonathan to make sure he understood why he prayed and what happened as the result of his prayer. To our amazement. Jonathan prayed because he knew that Jesus was the remedy for his sins. That only because of Jesus' life, death and resurrection Jonathan could have an eternal relationship with God the Father. Jonathan also understood that "Jesus coming into his heart" was a permanent thing and that nothing Jonathan could do would cause Jesus to leave him.

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Then The Unimaginable Happened

If you read my recent blog about The Yellow Blanket, then you know where this is going.

Jonathan was three years old. We had hosted Scott's nephew, Nick, for about three weeks during the summer. We planned to go on a vacation and then meet Scott's parent's half way. From there, the grandparents would take Nick home and we'd return home. Nick was 12. Josh was 10. Faith was one.

We were in a Holiday Inn in Pennsylvania somewhere. In the early evening as we were all in the room, Jonathan says? "Blankie?" Jonathan had only recently started talking so he only needed to say one word for us to know what he meant.

"What do you mean, 'blankie?' Don't you have it?" I asked the little guy.

"No."

I looked up at Scott. He looked at me. We didn't have to say anything the look of panic we exchanged said it all. We'd eaten in the restaurant. We'd been at the pool. We'd been attending ministry meetings in various conference rooms. We'd been all over the building.

We dispatched Nick and Josh to the pool. Scott went to check out the conference rooms. I went to the restaurant. We walked every hall we could have possibly traversed. I went out to the minivan and turned it upside down. I walked around the parking lot. We checked with the front desk.

An hour later we all regrouped in the room and shared our lack of success. We all fell onto the two double beds in defeat and dreaded the rest of the night and next couple days. Jonathan had watched all of us running around trying to find his blanket.

As we all rolled around on the beds groaning, Jonathan calmly went to the night stand between the beds, pulled out the bottom drawer and whipped his blanket out in victory, "Here it is!"

We all sat up immediately and all looked at each other in surprise and then we all turned and looked at Jonathan smiling smugly. None of us could believe that we'd been victims of a three year old's prank.

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The Yellow Blanket

As I wrote in an earlier blog entry, Jonathan became very attached to Joshua's yellow blanket. It was the only thing which provided him comfort and security. It cocooned him through ten months of "colic." It was there in the doctor's office when he got stitches in the back of his head. It was a familiar traveling companion to strange places. It was a train behind him when he began crawling, toddling and finally running. It was hiding in his backpack on his first days of preschool and kindergarten, just in case.

When I realized how dependent we all were on the blanket, I started searching baby stores, baby catalogs and the Internet for a back up. The original label had long fallen off, so I couldn't look to the original manufacture. I don't have the blanket industry vocabulary or sewer's knowledge of various fabrics for describing the blanket to help in a web search. "Yellow blanket," "baby blanket," "receiving blanket," "popular gift seven years ago," "satin border," "soft, fuzzy material," or "our life line to sanity" didn't call up proper imagines of Jonathan's best friend.

This is how desperate I was, I traveled in one direction for an hour to the nearest mall and shopping centers to our house. Then I drove back, passing through our county and drove an hour in the opposite direction to the next nearest mall and shopping centers. When we traveled to another state for the annual retreat for our ministry organization, I made my husband pull over at any store which looked remotely like it would carry a baby blanket.

As providence would have it, apparently the original manufacture didn't make this style of blanket any more. It was already seven years old by the time it was handed down to Jonathan. Fortunately, Joshua wasn't attached to it, so it was practically new when Jonathan started being wrapped in it.

I'm sure the reason I couldn't find an exact replica of the treasured yellow blanket has something to do with some governmental agency's declaration about the health and safety hazards. Something like the baby chick fuzzy quality turned out to be flammable. Or some research study linked carpal tunnel syndrome to the fact that children comforted themselves by rubbing the satin border together between their thumbs and forefingers.

I went to Plan B, in the words of a good friend. I went to a fabric store. I did find the exact yellow satin border sold by the roll. I couldn't find the actual material for the middle of the blanket, which makes sense since someone declared it flammable. No store would want assume the liability of selling such a dangerous material.

I'm not a seamstress. But my mom lives close and she's wonderfully talented with a sewing machine. She repaired the border with the new satin I found. Then, because Jonathan was getting older and the blanket was disintegrating by the day, mom and I decided to make hand-sized satin swatches. We noticed that Jonathan liked the feeling of rubbing the satin border of his blanket in his hand. Jonathan did accept these as a poor substitute. He called them "rackets." (I can't even make a guess about the etymology of his word choice.)

When he was about six, I noticed the blanket was being left more and more often in the room. One day, I just removed it and hid it in my sock draw. He hasn't asked for in for nearly four years. I plan to give it to him when he moves out of the house.

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Jonathan now. Yes, he's reading while standing on his head!

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Jonathan at the time he was diagnosed

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Living among Martians

Early in my research about Asperger's Syndrome, I read that there are two kinds of "Aspies" (a nickname they've given themselves.) One kind have a difficult time interacting with other people and don't particularly care. The other kind have a difficult time interaction with other people, but really desire the be around people.

I've studied Myers-Briggs personality types for years. I'm convinced that the Aspies who are content to be isolated from people are probably "introverts" and the Aspies who long to interact with people are probably "extroverts."

I believe Jonathan is an "extrovert." He loves to be around other people, even if the effect of being around so many people is difficult for him. As I said in an earlier blog entry, Jonathan doesn't do well with a lot of noise, people and/or activity. And by, "doesn't do well," I mean that he has a very low tolerance. He starts to get whiny at best and has full blown meltdowns at worse.

A few years ago, a weekly bible study meet in our home. At the time, we either had my oldest son watch all the younger children in the basement or we hired a neighbor girl to watch them. We did this to make it easier for young families with children to attend. On any given night we could have up to 13 kids between the ages of three to 12 years old in the basement. As if 13 kids in a contained space didn't generate enough noise, there was also a TV set hooked up only to DVDs, an air hockey table, a fuse ball table, an electronic keyboard, a race track, etc. Sometimes all these things were going at once.

Some weeks Jonathan would be up interrupting me during the study every five minutes because he was upset by something. Other weeks, Joshua would be up every five minutes complaining that he couldn't handle Jonathan. If I removed Jonathan from the basement and set him up in his room, he'd be fine. However, he wouldn't stay there. He kept returning to the basement. I decided Jonathan was drawn to the basement because of the PS2 games. So Scott and I purchased a used TV and PS2 and put it in Jonathan's room to be used on bible study nights. It worked for about a week. Then Jonathan was back down in the basement, miserable or making everyone else miserable.

Fortunately, over the years Jonathan has learned to recognize when he's on sensory overload and he withdraws from the situation as much as he can. As an adult and as his mom, who has read and researched as much as I can, I recognize when Jonathan is on sensory overload, even if he doesn't. And I recognize when he's withdrawn because of sensory overload. The hard part is training his brother and sister to recognize this as well.

For me the biggest clue is when he starts vocalizing the short vowel sound for 'a'. "A,a,a," means don't touch him, don't talk to him, don't look at him. Just give him a wide berth. I don't know why it is so hard for his 16 year old brother to understand that. And even his 7 year old sister should be old enough to understand. Nevertheless, I'm usually having to resolve the mini-explosions when Jonathan's tolerance is low.

"Jonathan, you need to tell them that you don't like that," I say to him. "Josh, when are you going to recognize that 'a,a,a,a" means Jonathan's tolerance is low and now is probably not a good time to decide it would be fun to tickle him?"

Or maybe he does recognize that this isn't a good time and thinks it's fun to hear Jonathan screaming as if his arm is being ripped off. And maybe Joshua enjoys feeling my wrath too.

But as I said, I'm glad that Jonathan's starting to figure out ways to deal more appropriately with his low tolerance. Recently another family, my kids and I went away for a mini-vacation. The other family had two girls, one a year younger than Jonathan and the other about four years younger. My daughter is in between their ages. Even though we had separate units, the girls ran back and forth between the two units.

After about a day, Jonathan started vocalizing things like, "I bet those girls can't be quiet for five minutes." Or "Why is Faith acting like a girl?" (She's has two older brothers, seven male cousins and is one of the few girls in our neighborhood. She doesn't have many female role models.)

By the second day, I would find Jonathan hiding in corners behind furniture where he couldn't be easily seen. He was quietly playing cards Go Fish or Kings In The Corner against himself. Once he had a Chess board in the corner and was playing against himself.

By the third day, I sent him off with his older brother to get a break from the girls. When they returned about two hours later, Jonathan was only back with us a few minutes before he said, "I'm going to write a book about living among three Martians. And this is what they sound like." Jonathan cocked his head to the side, he became devoid of all expression and then he made the sound of a TV station with no signal.

It is interesting that he should use that illustration. About a year ago I read a piece written by an adult male with Asperger's. He also likened living among "typical people" to being an alien in a new world having to adapt to a new culture, a new language, and new sets of rules.

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The Lord was with us

As I recall the first three and half years of Jonathan's life, I know without a doubt that my Lord was indeed my savior.

It started three weeks after he was born. Jonathan cried inconsolably from 4:00 pm to 8:00 pm on a good day and until after 10:00 pm on worse days. After the first week of crying, Scott and I fell exhausted and frustrated onto the top of our bed. "You've been through this before, what's going on?" Scott asked, referring to the fact I raised another infant before Jonathan.

"Joshua never did this, but I've been reading through the What to Expect The First Year. It says colic starts about now."

We tried every proposed remedy for colic. The thing that seemed to work the best was to wrap Jonathan tight (like a cocoon) in one particular blanket. Between my two boys, I'd received a dozen baby blankets, most of them handmade. However, it was Joshua's yellow blanket, that we'd received seven years earlier, which Jonathan preferred.

We also discovered that leaving a TV on unused station, the white noise calmed him some nights. On other nights, he seemed to prefer DirecTV's classical music stations. But these only worked to keep him calm after the colicky time of the day.

The Lord showed me that Jonathan's "difficult time" coincided with Joshua's arrival home from school until he went to bed. Jonathan also had difficult times when we had our church meet in our house on Sunday nights. We were a small congregation then and didn't own a building. Before I married Scott, his house was mostly empty and worked well for the church meeting on Sunday evenings. The adults would meet on the main floor, the young children in the unfinished basement and the babies upstairs in one of the spare rooms. The nights the church met in our house there were about forty people ranging from infant to adult. I found myself taking Jonathan up to his room, closing the door and rocking him the entire people were in our house.

One night we took Joshua to a minor league baseball game. There was no place in the stadium to get away from the loud speakers. Jonathan was already acting colicky during the game, but the fireworks display really did him in. We left early. And Jonathan cried the entire 90 minute drive home, making everyone miserable.

It was through experiences like these that I believe the Lord started showing us that Jonathan couldn't take a lot of noise, activity or people. We started adjusting our lives around this knowledge. And when I look back at some of the things we found that helped us through this period, I praise the Lord for giving me "mother's instincts." Of course, we didn't know why Jonathan was acting the way he was, so we didn't know where to look to find the answers.

In the same way, I also thank the Lord that gave us the ministries and responsibilities we had and the personalities we have. My husband and I are the type of people who are responsible, who have to perform to expectations, and who have follow through on our commitments. The Lord also gave us an older son, who is very active in the neighborhood, school and sports.

Scott had committed our house for the church's use. We also held a weekly small group bible study out of our home. My husband is an elder in our church which comes with a whole list of commitments and as his wife, I felt obligated to the congregation in other ways.

The result was that we some how (translate "The Lord guided us.")managed to figure out ways to meet Jonathan's needs while still living our lives and continuing in our ministries. Our call to serve the Lord was much stronger than our desire to just do the easier thing...withdraw from life, church, extended family, friends and sports.

A few years ago, after we had Jonathan's diagnosis, I was at a training session for parents of autistic children. The trainer was well renowned expert in ABA (Applied Behavior Analyst) was there to help parents start going to church, eating out at restaurants, celebrate holidays with extended family, etc. During this training session the expert taught all the things that we had been doing for years.

Wow! That's when I understood how the Lord had been walking with us along. The Lord honored our commitment to serve Him by giving us instincts about how to help Jonathan adjust to the world around him. Most of the other parents in the training, understandably, had stopped living their lives and started adjusting their world around their child. And I grieved alongside them to hear how trapped, lonely and out-of-touch they felt.

I praise God, because that could have easily been us! The Lord knew that in the short run was probably a lot easier not to attend church than spend a couple of years trying different things. Lord knew it was probably easier to not go out to a restaurant than to swallow our pride about what others think about our child being strapped into a seat with Scott's belt. Lord knew Joshua had needs which needed to be balanced with Jonathan's. Lord knew we would've given into the "easier" if we were in any other circumstances or had different personalities.

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More Pickles

Jonathan went through a period where he was obsessed with pickles. I don't think he really understood the meaning of the word. Or, maybe we didn't understand Jonathan's meaning of the word.

He's always willing to help me out around the house. I would ask him to do something for me and he would say, "Of course, I'm stronger than a pickle." The first time I heard that it stopped me in my tracks. I had to think about it for a few minutes. But eventually I decided that he was right, he was stronger than a pickle. It wasn't like his home made idiom made less sense then many other well known idioms. He's might even catch on one day.

Then there was a period of time when his diet was so limited that most our friends and family would always keep big kosher dill pickles on stock. They knew that no matter what they served, Jonathan would at least eat the pickles.

Finally, my husband came home one day from a business trip. He was talking to Jonathan who was telling him that he wanted to be a jet pilot and then an astronaut when he grew up. Scott said to me, "Did you hear that? He wants to be a pilot and an astronaut when he grows up. I was his age when I decided that was what I wanted to do too."

My husband was so pleased. One of the stories Scott's mom loves to tell is about a conversation she overheard when Scott was young. He'd asked his friend where he was going to college. His friend replied that he didn't know. Scott was incredulous, "How can you not know?" His friend replied, "Because I haven't even started kindergarten."

Scott had known that he was going to the Naval Academy to become a pilot and then an astronaut since he was three years old. Scott had accomplished all his goals but becoming an astronaut. Although the Navy did nominate him for the space program, a medical condition which required medication kept him from advancing further in the candidate process.

Knowing all this, it broke my heart to tell Scott, "I know that really excites you, and I hate to tell you this, but yesterday Jonathan told me that he wanted to grow up and become a pickle."

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The Emperor has no clothes

We have a saying in our house, "It's merely a concession to the rest of us that Jonathan wears clothes." I'd dress him in the morning, but at some point during the day I'd turn around and he'd be naked.

We have a 15 foot trampoline outside which we bought for Jonathan's sensory issues and hyper-activity. He jumps on the trampoline all year long, except when it is "too hot." Anything above 70 degrees is "too hot" for him.

After one particularly cold winter, my husband and I happened to look outside to check on Jonathan jumping on the trampoline. It was starting to "warm up" to about the mid 50s. To our surprise Jonathan was completely naked jumping on the trampoline. When we went outside to investigate, he told us that it was "too hot outside for clothes."

Our oldest son, just starting his early teen years was mortified. He would get angry at us because we "couldn't control Jonathan's naked trampoline jumping." I could understand Joshua's fears. Our trampoline sits at the top of our driveway. It is the most exposed place on the property. I often feared delivery drivers or strangers coming to our house and reporting us to social services. Fortunately, our property is pretty secluded and wooded. Most of the people coming to our house are coming intentionally and most already know about Jonathan's idiosyncrasies.

When Jonathan started attending all day kindergarten his teacher didn't have a lot of patience for his hyper-activity. We'd regularly receive notes about him. Because he was on an Individualized Educational Plan, I think she tolerated him more than other active boys. One day she sent home a note complaining that he kept taking off his shoes in class.

I first I was upset. I was getting tired of her nit-picking. I read the letter out loud to my husband and in-laws to complain about her lack of tolerance. I don't remember who said it, but someone said, "She should be glad that it all he's taking off during class." We all busted out laughing. We all laughed so hard that we cried. It is moments like this which help keep Jonathan's issues in perspective and remind me that I can't let the ignorance of others get to me.

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The Great Dental Debacle

Nothing with Jonathan is easy. I didn't even attempt to take him in for regular dental check ups until he was four. I took him to my family dentist. I had my oldest son, Joshua, sit in the dental chair first so that Jonathan could see what he could expect. While he was fascinated with what the dental hygienist was doing to Josh, Jonathan wanted no part of it.

He sat in the chair, clutching his "Shake," his stuffed dog, and refused to open his mouth for the hygienist. No amount of begging, bribing or prodding was going to get him to open his mouth. The dentist suggested that I take Jonathan to a pediatric dentist in the area who specialized in working with people with special needs.

We went to this dentist. She had a live bird in her office, drawn and photographed pictures from all her patients taped all over her walls, and lots of stuffed animals. She has stickers stuck to the dental lights and mirrors over the kid's heads. She has a dozen sunglasses for the kids to chose from before they go under the lights. All her stuffed animals have a set of human teeth and she has toothbrushes and dental instruments for the kids to brush the animals' teeth.

She's older, probably has grandchildren the age of some of her clients. She's very calm and talks the entire time the children are in the chair. She comments on their security blankets and toys, she talks to her bird, who often talks back, and she talks to her employees and parents.

For the first year or so she just talked to Jonathan and didn't push him. I think it was about that long before he even opened his mouth to let her count his teeth. Eventually, he allowed her to clean his teeth with a regular toothbrush. When he needed more dental work, she prescribed something to give him to make him relax before she did any work on his teeth.

This year we started seeing a psychologist because Jonathan had some regression issues. We decided upon a multi-pronged approach on treating him. He gets behavioral training, some counseling and a couple prescriptions. One was for anxiety. The first time he saw the dentist after being on the anxiety medication for a few months he didn't whimper all the way to her office. He jumped up into her chair, opened his mouth without prompting and he even let her use mechanical dental instruments for his cleaning. Wow!

One of his sealants was coming off, so we went back to have it repaired. Since he was doing so well, we decided against the additional anxiety medication she had given him in the past. We went to have the sealant repaired and it went wonderfully. She was even able to take bite wings for the first time in his life.

Unfortunately, the bite wings revealed a cavity that couldn't be seen upon regular inspection. Since he did well with the sealants we decided again to skip the additional anxiety medications.

The day that Jonathan went in to have the cavity filled, he'd eaten a meal just prior. With the other medication, he wouldn't have eaten for four hours prior to the dental work. Needless to say, as soon as the dentist started the gas, administered the Novocaine and prepared his mouth to fill the cavity, Jonathan started vomiting.

Again, I really appreciate this dentist. Even though her face showed how ticked she was, her voice and response didn't change from her normal quiet, calm and easy going demeanor. The dentist and staff got Jonathan and all the instruments cleaned and sanitized and attempted again. Jonathan started vomiting again.

The dentist called off the cavity filling that day, cleaned Jonathan up again and helped us walk out to the car. She told Jonathan not to bite on his lip, which felt funny because of the Novocaine. She told me to take him home and let him sleep off the effects of the gas and keep him out of soccer camp that night.

At dinner time, Jonathan showed me his lip was swollen. I was debating about what to do when the dentist called to check on him. I told her his lip was swelling. She tried to call in a prescription for an anti-biotic, the the pharmacies had closed. She said she was leaving the country beginning at 3:00 a.m. but she'd call me as soon as her airplane touched down.

The next morning I walked out of my room and saw Jonathan's little butt hanging out of the bathroom door. I could tell he was standing on the sink. As I got closer I could tell that he was examining his mouth in the mirror. His lip was now twice the size and green with pus.

What was I going to do? The dentist was on a plane and couldn't be reached. I know she called in an anti-biotic, but was it going to be enough to take care of this? I'll summarize the rest of that day. We stirred up Jonathan's orthodontist and got him all panicked. He called a local surgeon every 10 minutes until the surgeon agreed to see us. The local surgeon took one look at Jonathan and said, "Ah, yes, this typical of children who chew their lips after Novocaine." And he prescribed the exact same thing as our dentist had called in.

This is a long lead into how Jonathan responds to something like this. Because his lip was so fat, he decided that he couldn't swallow his spit regularly. So he started this slurping sound in the back of his throat. Even he noticed how the sound was like the vacuum the dentist uses to clear out the mouth while they are working in it (she calls the instrument "Mr. Thirsty"). Both the dentist and oral surgeon didn't want him eating anything that required chewing. If you know Jonathan's diet, that eliminates the small menu of food that he does eat. We ended up feeding him pudding for every meal for nearly a week. Jonathan also decided that he couldn't talk, so he started off using his finger to write in the air, but switched to paper and pencil after a day. I think he slept for almost two and a half days straight. Now mind you, Jonathan is hyper-active. He has to be medicated to be able to sit down at the table through a meal. If Jonathan willingly crawls into his bed or lays on the couch, I know a call to the doctor is necessary.

When Jonathan was about three or four, he cracked his head open and needed stitches. He only wore Hoodies for about a month because he was afraid his brains would fall to the ground. The stitches were gone within a week, but it took over a month to get him to stop wearing a Hoodie. When he got a cold, he'd develop a cough which would last three or four months after the actual cold. The specialists told us that the cough became a sensory input that he enjoyed. When Jonathan started the "Mr. Thirsty" slurp, I wondered how long it would take to go away after the swollen lip.

How long will it be before he lets the dentist back in his mouth again? How long before he starts talking again? Just this year working with Kennedy-Krieger Institute, we got Jonathan drinking out of a regular glass. Before he'd only drink from his sippy cup, a juice bag or stick his face in under the bathroom sink. Just when we got him drinking out of a glass, he had to switch back to a straw because his lip was so fat. How long before he's drinking out of a cup again.

The psychologist had already fussed at us because Jonathan lost three pounds between his two last visits. The doctor didn't want him losing any more weight. And yet for a week all he ate was pudding. Then it took awhile to get him eating "normal foods" again....

Jonathan had just gotten "spacers" in to begin some orthodontic work. Fortunately, his orthodontist has treated our older son for five and a half years. He was the man I called when I didn't know who else to call. His office also followed up after a couple of days and asked us to come back in to see him. When we got there the orthodontist pulled the spacers out of Jonathan's teeth. "I don't want you to bring him back here for six months. I want this nightmare to be a distant memory before we try and put braces in his mouth."

The good news is that Jonathan got back to "normal" in just a couple of weeks. Drinking out of a regular cup is coming slower, but every once in awhile he surprises me by showing off an empty glass. We haven't tried to fill that cavity yet. I'm not sure what that office visit will be like....

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My Search for the Holy Grail: a decent chicken nugget

One of Jonathan's idiosyncrasies is food. An occupational therapist explained to us why Jonathan is so difficult to feed. It seems that he has a "hypo-sensitivity" in his mouth area; therefore, he tends to seek out textures and flavors of foods which cause his mouth to feel satisfied. He loves chips and salsa, tacos, pizza and McDonald's chicken nuggets. For a long time he'd only eat chips and salsa, bologna, McDonald's chicken nuggets, raisins and peanut butter.

As you look across this list, you can see that our only option for eating out was McDonald's for years. Every once in a while we'd try Chik-Fil-A, Burger King, Outback Steakhouse, which all serve fried chicken strips of some kind. However, we always had the same result. He'd eat the french fries, but not the chicken. Sometimes he wouldn't even eat the fries.

Throughout most of the year I had at least three kids in sports and their schedule worked out so that at least one (sometimes all three) had a practice or a game all seven days a week. Our family prefers to eat meals together, but last year we settled for getting as many as we could to the table each night.

Since, I had to drive some combination of kids, I wasn't always home to make dinner, so I decided I make meals ahead of time. To complicate matters further, Jonathan won't eat anything that has been reheated. "Tastes like wood," he says. Believe me, I've tried to slip reheated food by him, it never works. This meant I need a meal which Jonathan would eat, which I could prepare ahead of time, and it could be reheated in the microwave.

Thus began my search for the Holy Grail, a chicken nugget that he'd eat. I found a knock-off McDonald's chicken recipe on the Internet. I have never fried food, but I bought a food fryer so I could make these chicken nuggets. This recipe was easy but it was a very long process which took two hours to make a batch of nuggets.

Knowing my son, I made the first batch to see if he would even eat the chicken nuggets. My mistake was I gave him the nugget straight out of the fryer. He loved it! So the next day I bought six pounds of chicken breasts, cut them into nugget size, breaded them, frozen them, breaded them again and fried them. Then I vacuum sealed them into small meal and snack size pouches to be ready to pop into the toaster oven for a quick meal after soccer practice and before bed. I was exhausted and my back ached at the end of the day, but I was so pleased with myself because I had three months worth of easy meals packed away into my freezer.

I probably don't even have to write this next paragraph, you know what's coming. The first night I pulled out the chicken nuggets, reheated them in the toaster oven and placed them before Jonathan. He took one bite and declared, "Tastes like wood."

"What do you mean? You said you liked them the last time I made them for you," I shrieked.

"They taste different this time. Tastes like wood," he continued to insist pushing the plate away from him.

I looked up at my husband as I remembered how long I took to make these, how many were still in the freezer, how my back ached for two days. He looked back at me without saying it, but his face communicated, "You should have known. You gave him a fresh one the first time, not a reheated one."

The good news was that my teenage son, my teenage Spanish exchange student and all their teenage friends LOVED the chicken nuggets. Once the "Jonathan hold" came off the nuggets, the three month supply was gone in a month. The bad news is that the teenagers really love these and request them (not knowing what a pain they are to make) and I'm still searching for a chicken nugget (besides McDonald's) that Jonathan will eat.

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The Significance of The Name

I believe in the tradition of the ancient Hebrews who believed the name described the character of the person. It is interesting to me that several of the main characters in the Bible were renamed because of this belief. So all my children have names based upon the person I pray they will become as adults.

When Scott and I first started dating we talked about names. He and I agreed right away that if we had sons (because we weren't thinking about having one together at the time) we would name them Jonathan. We both admired David's best friend. Jonathan was the first born of King Saul, and the rightful heir to Israel. However, after Jonathan met David, he recognized that David would actually succeed Saul as the king.

Wow! Even now I marvel at the relationship Jonathan must have had with the Lord. He understood that another man would inherit the kingdom and yet Jonathan became best friends with that man. Not only that but Jonathan saved David's life from Saul. And finally, Jonathan remained loyal to his father and country by fighting attacking nations. In fact, Jonathan died beside his father and brothers fighting for a nation he would never rule.

Jonathan's middle name was harder. We'd picked out three options. "Kelly," which means "red." Since there is red hair on both sides of our families, we were sure that he'd have red hair. I wanted his middle name to be "Scott" in honor of his father. But his father wasn't comfortable with that. Then one day during a sermon through the Book of Acts, the pastor was talking about Paul. I don't think I heard the rest of the sermon because I was pretty sure that "Paul" was the name that God wanted Jonathan to have. I'm convinced that Jonathan will be like his father and will teach people about the promises of God. In the bible, we see many examples of Paul's teaching about the Lord and His promises through the Book of Acts and all Paul's letters in the New Testament.

Jonathan means "gift of God." And Paul means "small." How appropriate this turned out to be when Jonathan was born four weeks premature. He was definitely a "small gift from God." He didn't even weigh six pounds.

It wasn't until Jonathan was five years old that I realized another significance of Jonathan's name. Of course, by the time Jonathan was five we already new he was diagnosed with Asperger's, ADHD and Anxiety Disorder. And we began to understand some of Jonathan's limitations. I remembered Paul's struggle over his own weakness.

"To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." 2 Corinthians 12:7-10

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Nonsense Words

It wasn’t until I had a child who takes everything literally that I noticed how much of our language doesn’t really make a lot of sense.

When Jonathan was first diagnosed with Asperger’s Syndrome, we learned from the doctors and specialists that Jonathan took everything we said literally. They told us to try and use simple language and not use idioms. It turns out this is easier said than done.

Jonathan was about three and a half years old and telling my husband, Scott fantastic story. Scott was tying Jonathan’s shoes and only partially listening. When Jonathan finally took a breath, Scott said, “I didn’t just fall off a turnip truck, you know.”

Jonathan immediately exclaimed, “What?”

Scott remembered that he wasn’t supposed to use idioms and corrected himself, “I mean, I wasn’t just born yesterday....I mean, I think you’re telling me silly stories.”

Jonathan said, “No! What did you say before that?”

When Scott repeated the idiom and then explained it, Jonathan just laughed and laughed.

Another time he was playing on a youth soccer team. Jonathan became anxious and started fighting going to practice. As we started asking questions, we discovered the coach kept telling the kids, “It’s a piece of cake!”

Jonathan was disturbed by this expression because he didn’t understand what the coach meant. “Is he walking around with a piece of cake in his back pocket?”

Last year my mom bought Jonathan a “Tooth Tunes” toothbrush, which plays music in his mouth. My daughter’s birthday was two weeks later and she requested a “Tooth Tunes” brush too. When Jonathan saw that Faith got the same toothbrush he was excited for her. “I got one for my birthday.”

My mom asked, “How is it working for you?”

Jonathan then launches into a detailed explanation about how the toothbrush works. Mom tried to suppress a laugh as he seriously answered her question. When he was done she explained, “Yes, I did ask you how it worked. What I meant was, do you like it?”

A couple years ago Jonathan was watching TV when a Wal-mart commercial came on. The superstore was advertising for the beginning of school. After listing all the new clothes and school supplies available to suit pre-school through college students, the commercial ended with “School begins at Wal-mart.”

Jonathan was incredulous. “What the heck!” I heard his voice from the TV room, “School doesn’t begin at Wal-mart! It begins in August!”

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