Advocacy: Have You Hire Experts?

Thank you for all the wonderful comments yesterday. Since you have been in my shoes one way or another (and even if you haven't, you might know others who have, so please feel free to chime in), I'd like to know if you've hired or found volunteer advocates to come into IEP meetings with you. My own educational consultant teaches a course on special education advocacy and has invited me to be a guest on her panel this weekend.

When I accepted her invitation she wrote, "I know your tendency to over prepare...." She knows me too well :-)

So I thought I could confirm her suspicions and ask you the same two questions I'm going to be asked. I already have of my own ideas, but I'm interested in hearing yours too because I like the interaction from yesterday. (I won't use them if you ask me not to use them.)

1)What difference did use of an advocate have for your child (in the dynamic of the team, your understanding of the process, etc)?

2)How did the use of an advocate (in my case, attorney, neuropsych and our educational consultant) make a difference for your son?

Just briefly, my husband and I called in the hired guns the summer between preschool and kindergarten. Jonathan started off with an IEP through ChildFind, our state program for early intervention program under IDEA. We really wanted and needed pragmatic speech and social skills, but we received Occupational Therapy. Probably the only reason we even received the first IEP was a friend from our church was the OT assigned to his home school. She went out on maternity during his preschool year and the new OT bumped him down to observation and consult. We asked for Jonathan to be retested for speech and language. The vice principal said, "You don't want to do that." We insisted we did. The VP said, "I can assure you if you request testing, Jonathan will lose his IEP." We were naive and pushed. Sure enough, based upon all the new players at the IEP table, Jonathan was found to no longer meet the criterion for eligibility under the school's interpretation of IDEA.

We went to the local chapter of LDA. We actually sat down with the board, which had about 100 years of advocacy experience between all its members. The LDA board told us the school was correct in their interpretation of IDEA and Jonathan's evaluations. To give them credit, they also added the disclaimer that they only had ADHD advocacy experience and not autism. Someone from that meeting pulled me aside and recommended I speak to a special education attorney.

I could say, by happenstance, but I believe in the Lord's ability to work things out for my good and His glory, the attorney she recommended wouldn't return my calls. So I went to Wrightslaw Yellow Pages and found another attorney. If you are familiar with Wrighstlaw and their newsletter and training seminars, you might be familiar with our attorney. It turns out I'd been reading his articles on the webpage for about a month before we hired him. From there we were introduced to all the other experts we used the first three years.

I know in our case Jonathan "flies below the radar." He's smart enough and high functioning enough he can blend in easily with his peers. He can also "hold himself together" and "internalize" all his stress so he's not a behavior problem at school. But he's miserable and so are the rest of us when he gets home. The first year of kindergarten he had thirty-eight wetting accidents in a row during school hours. That fact alone, our neuro-psychologist said, indicated something was wrong in his environment. Our educational consultant introduced us to the idea of Jonathan being "twice exceptional." He has learning disabilities and he has gifted abilities. She said if we were in other states, he'd qualify for an IEP just for his giftedness. (Too bad those states don't have Naval Bases for my husband to work.)

As I learned more and more about Jonathan's disabilities and about advocacy, we stopped using our consultants as much. (That...and a little bit of humbling myself before the school administration smoothed the road during subsequent IEP meetings.) Now we pretty much only call our educational consultant with questions and to put her on notice of meetings, in the event things turn south.

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Do I Need To Explain or Apologize?

How many times have you asked yourself this question regarding your special needs children? Do you ever find an answer? Or do you find you keep changing your mind about your answer? When you do explain or apologize, are you doing it because of your pride? Are you worried about what people think about you, your parenting style, or your child? Or are you explaining and apologizing for your child and to help educate others around you? And if you said yes to the last question, is that really true, or does it still come down to pride? These are rhetorical questions and really directed at me and not you. But I would like to know if others have this on-going battle.

A few years back the principal of the school gave me a series of tapes used in school systems for teachers, but I found them useful for my own parenting. It was called Helicopters, Drill Sergeants and Consultants: Parenting Styles and the Messages They Send. The speaker talked about power plays between parents and kids regarding eating in a restaurant. He talked about ultimately resolving it by picking the kid up and carrying him outside to the car kicking and screaming the whole way. Then he said, "You don't need to worry about what the people all around you are thinking, they are not your friends and you'll probably never see them again anyway."

Wow. He's right. Why should I care more about what perfect strangers care about me rather than doing what is right for my child? So, I try to think about this when I'm in difficult and embarrassing situations. Not that I do a good job of remember this.

This is fine for situations where I'm in a restaurant in another state or off the toll road. Chances are I will never see anyone again. The fact is that I live in a small community surrounded by water on three sides and only one major road out. I see some faces over and over again, even if I don't know their names. Then there are situations where I will see some people over and over again and might even know their name. For example, the place were we get hair cuts. With the exception of my husband, my entire family goes to the same place to get our hair cut. The ladies in there are even linking me to my various children when I come in alone or my teen goes in by himself.

Do I owe them an explanation as to why Jonathan carries on about getting his hair washed or why he says "that hurts" throughout the entire haircut? I know it is really hard to believe or understand that cutting hair does somehow hurt him. I don't know if it is the noise, the pulling on his hair, the touching of his scalp or what. He can't articulate it yet. Half the time when the lady says, "No, that doesn't hurt." I say, "It hurts him." The other half I remain silent. Half the time I think I owe them an explanation and half the time I don't. I hate the fact that I can't make up my own mind on this dilemma.

It reminds me of one of my favorite movies Dead Again. It's not in this clip, but Robin Williams advises one of the main characters about a smoking habit. "You are either a smoker or a non-smoker. Decide which you are and be it." When I'm in these situations, I say to myself, "You are either going to explain and apologize for the rest of his life or you aren't. Decide and become consistent."

Again, more questions today than answers or information. Would be interested to hear from others about their thoughts and resolutions.

P.S. I wanted to put the clip in here. I have to play around and figure out how everyone else is bringing video clips in. If you how, please let me know. :-)

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Flushing Toiletes

When Jonathan was younger, he had little to no tolerance for noises. When Jonathan was a few months old, I don't recall, maybe four or five, we took Joshua to a minor league baseball game. I have to admit, with my own sensory integration issues, it was a miserable experience for me too. There was nowhere in the stadium one could get out from under the blasting speakers, and believe me, I tried every nook and cranny. At the time, I knew it was making me miserable and I suspected it was making Jonathan unhappy because nothing could console him. Then the fireworks started. It was really bad by that time. Scott decided to take us home. (The man who is from Green Bay Packer land and the fools who sit with no shirts on in 30 degree Fahrenheit weather. The man who made us sit through a Baltimore Orioles game as buckets of rain poured on us and the temperature dropped from the 90s to the fifties. He bought us the last three sweat shirts in the stadium and walked us back to to the game...yes, this man had enough of Jonathan's screaming to let us leave the game early.) Jonathan screamed the entire hour long drive home and a little bit more once we got him home. I think he calmed down shortly after wrapping him up in his yellow blanket and putting him in his dark room with classical music playing softly.

Between his toddler and preschool years he was hard to get out of the house. Our A.B.A. suggested it was because of the anxiety of not knowing or being able to control the noises. At home he was familiar with all the noises or we could anticipate them and warn him. (I'm going to turn on the blender, I'm going to shut the garage door, I'm going to vacuum, etc.)

Oh the stories...I'm sure you have them too. The muscle car that decides to flex just as we are walking out of the sandwich shop. The motorcycle which decides to rev its engine as it is stopped beside our van at the stop light. The car behind us deciding to demonstrate the definition of a nano-second (the time between with the light turns green and he hits his horn).

Jonathan didn't like coming into the public bathrooms with me because of the flushing toilet noise. He was too young to let him stay outside where someone could snatch him up. So we came up with a compromise. He would stand by the exit door and I would flush only after he stepped out. That only worked once. I didn't anticipate in my plan the fact that people on either side of us would flush their toilets.

What can you do but laugh?

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School Supplies

At the beginning of the school year, when I was reading a lot of blogs from other moms, I laughed at a number talking about school supplies. One mom had to buy crayons, scissors, pencils, and paper. Not surprising unless you are aware that her daughter is blind. Another mom had to sharpen 40 pencils BEFORE sending them in. I'll spare you the rest of the details of her blog, but the image she described will forever be in my mind.

I hate shopping for school supplies. Because every year the school manages to pick the one item in which I find myself driving from store to store down the road filed with strip malls. The dreaded plastic folder with pockets and brads is the bane of my existence. For three years in a row I have been on the search for the correct plastic folder in the correct color. Last year I saw them during the summer and bought several in every color offered. I was so smug. Thinking I outsmarted them this year. On the last day of summer I still had to go to five stores and didn't find the red one.

Two years ago the school wanted hand sanitizer with something peculiar about it. I can't remember what. I just know every bottle I picked up left a question in my mind about whether or not it was safe to buy. I had pictures of some child having a grotesque allergic reaction to it which would make me live with horrible guilt the rest of my life. It turns out that the school misprinted the supply list and this thing wasn't sold in hand sanitizer anyway.

This summer was the "latex free band aid." I did not pick up a single box, brand name or generic, that didn't warn a small amount of latex was possible. After five stores, I decided not to purchase band aids, it was just a "would be nice if you sent us" item anyway. Hope someone was able to find these elusive band aids for all the scrapped knees.

The thing that has really chapped me this school year was the two packages of non-college ruled paper. The reason why is every night I clean out Jonathan's backpack and "recycle" a half a dozen paper cootie catchers, paper airplanes, and paper footballs. There isn't a single mark on the paper. So obviously I bought all this paper for Jonathan's amusement as opposed to his education.

I had this on my list of items to conference with the teacher. I didn't have to bring the topic up, the Occupational Therapist brought it up during Jonathan's I.E.P. meeting. She was pleased that Jonathan has found a "fidget" for himself after "all these years" of providing him different fidgets. The ones she'd given to him in the past have been too distracting to him and others and ultimately taken away. This year the act of folding paper has kept him focused and doesn't bother anyone else in the classroom. In fact, the teacher said she uses his desire to play paper football as a reward for the end of the day.

There is a person inside of me screaming about the waste and generation of unnecessary recycling. Yes, I know I can recycle all this paper...but....

The mom inside of me is proud that once again Jonathan has provided for his own needs...when others can't or won't. He's found something that helps keep him focused and out of trouble. The teacher said she's asked him questions when he'd folding paper, and he knows the answer so she doesn't mind.

She also told us about one day he was on the floor with his head on his social studies book. She said, "I didn't know if he was reading or just 'done' for the day." I sent her the picture of Jonathan reading sitting on his head. The I.E.P. sent emails back "LOL."

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In Jonathan's own words

Here is the story Jonathan wrote his first days of school. We just saw it for the first time at the I.E.P. meeting. This is an example of what Jonathan can do when given the tools, structure and time. Before I type his story, I thought I should mention his teacher pointed out how Jonathan is printing his name lately "Jonathan How@." We pointed out that his math homework "isn't finished unless the Yin and Yang are on the paper somewhere." The Occupational Therapist said she was reading through this story posted on the wall outside his room before she "went back to see who wrote it." I have to agree with her (it may be the first and only time I do), his handwriting is incredible. Accept for the fact his name is on the paper and the content is definitely him, I wouldn't have associated the handwriting to him.

For all you writers out there...Doesn't Jonathan have an incredible "voice?" I think so, for a 4th grader. Am I wrong to feel his verbal IQ tests aren't truly reflective of his abilities? Should I pick up the sword and keep fighting to make the school system believe he has "verbal learning disabilities" which prevent him from showing the rest of the world what's going on in his head? These are serious questions. And I seriously would like your input. I'm perfectly open to "you're just an overly proud mother. He's just average like his tests show. Save your energy for other fights...like a more challenging math program."

My name is Jonathan How@. I am in the 4th grade at ______. Want me to tell you about my goals, family and summer? If you don't just walk away right now.

Before I finish 4th grade I have some goals to accomplish. My top goal is to get to level 9 in Super Smash Bros with Medeknite. I'm currently on level 8! Getting to level 9 will be easy. My friend ______ runs super fast! Before the end of 4th grade I want to run as fast as him. Last year I got all A's and one B. This year I want straight A's. Wish me luck I NEED to accomplish all of it.

Okay I have 5 people in my family. My dad helps me with math I don't know. I just need him with two digit multiplication and division. My mom cooks food. Mom is my alarm clock. My big brother Josh and I LOVE computer/video games! My little sister Faith is 50% annoying and 50% fun. I had a Spanish student. He gave me my top goal.

This summer I did cool stuff. I went to Wisconsin Dells. I think it had 7 water parks. I got swim lessons. The only problem was I got an infected lip.

If you like my 4th grade life, yeah for you. If not. Sorry.

Waiting to here your verdict....even all those people who stop by my blog but don't comment. I'll list my email in my profile if you want to send your thoughts there. Or you can comment "anonymously" on the blog. There is a way, I've seen it. I just can't tell you how to do it.

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Let's Talk Torture

Jonathan swears the only reason for homework is to torture him.

Let's talk torture.

As I'm in the middle of Jonathan's nightly weeping and gnashing of teeth over having to do homework, my daughter Faith is following me around the house asking me to decode every other word on her own homework assignment, which she is doing without the complaining. At the same time my oldest son is home early from soccer practice and his singing at the top of his lungs and off key "American Pie." I'm trying to get homework done, dinner made and the house cleaned up for our weekly in home bible study group while Jonathan is screaming as if he is being tortured, Faith is now crying because she wants to be cuddled, Joshua is still singing off key and loudly "American Pie" and now Scott has walked in the door and wants to tell me about his day. By the way, did I mention I have the beginning of a migraine and I'm convinced I'm now officially menopausal?

You'll have to pop over to my other blog to find out why I love my husband so much. Since this blog is supposed to be about Jonathan and living with Asperger's Syndrome, I'm going to stop here. The rest of my story is really about the rest of my family. (The Moon's Broke)The latest two entries relates to my wonderful husband who, by the way, accepts all the blame for Jonathan having Asperger's and lets me have all the credit for my three children being natural soccer goalies.

I can justify talking about how Jonathan's issues effect on the rest of us, because as the saying goes in our house, "If Jonathan ain't happy, no one is happy."

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Jonathan's I.E.P. meeting

Yesterday was Jonathan's annual I.E.P. review. It went pretty well. We really didn't have anything major we wanted to address. We are a wee bit nervous we were talked into a total re-evaluation a year early. Jonathan had met his writing objectives. The I.E.P. Chairperson (Chair) said they needed to retest to see if he still qualified for special education services in the area of writing and to set new objectives if he did. This meant he'd need new IQ testing and observations.

Jonathan did not meet his speech and language objectives. At first the speech pathologist (SLP) said she did not need new testing because she was comfortable with her knowledge and understanding of Jonathan's strengths, weaknesses and her goals for him. However, the rest of the team talked her into going ahead and retesting so "all his testing dates line up and a new I.E.P. could be issued."

Our educational consultant's previous warning rang out in my head. Scott and I expressed our concern the last time Jonathan had an effective I.E.P. in place that a request for additional testing resulted in our loss of the I.E.P. when the team decided Jonathan did not re-qualify. Three and a half years later and tens of thousands of dollars in fees to attorneys, consultants and private experts later, Jonathan was re-qualified. With middle school on the horizon, we didn't want to lose the I.E.P., especially since we believe the I.E.P. keeps him level with his peers.

In the end we agree to testing early for several reasons. First, the speech and language pathologist assured us Jonathan's high IQ scores were not going to change her mind about his need for pragmatics and verbal reasoning interventions. The problems the general education teach and the parents raised during the meeting only re-enforced her opinion she needed to continue working on his verbal reasoning skills. Second, the Chair reminded us the SLP was only guaranteed to be assigned to our school this year. Next year we could have a different SLP who thinks differently. Since this SPL is of the opinion that the diagnosis of Asperger's alone means Jonathan qualifies for speech services, we decided to have the testing done. The first three school SLPs were of the opinion Jonathan's high intelligence scores, high grades and placement in the Honors program did disqualify him for services. And finally, putting an I.E.P. into place this year will guarantee Jonathan will go into middle school with an I.E.P. and possibly have him going into high school with one, if he still needs it.

We checked in with our education consultant after the meeting just to put her on notice we might be calling her back in to meetings. She reminded us having an I.E.P. was a "team" decision so just because the SLP says "yes" doesn't mean he'll get services. However, she also said, "let's not assume the worst right now." (P.S. If you go to my Shelfair bookshelf, you'll see a book she co-authored on Special Education Advocacy. Check it out, it's a great resource for your library.)

Although these next concerns were not related to the I.E.P., we were satisfied with the resolutions. First, the general education teacher agreed instead of Jonathan having to write his spelling words everyday, I could play the spelling games. I found since he's visual, he remembers spelling words better when we play games. I'll sign off in his spelling book we did the homework for the accountability piece. We agreed the most important goal of the "Reading Response Journal" assignment twice a week is to see if Jonathan is comprehending what he is reading and if he's making "connections." Therefore, we will do a combination of parents taking dictation and Jonathan typing or writing in the notebook.

Finally, the general education teacher will talk to Jonathan's math teacher (who is a different teacher because he's the only teacher teaching Honor's math). The I.E.P. team agreed Jonathan receiving 100s on his pre-test indicates he's mastered the material and should be challenged more in math. Instead of giving him the next grade level book to work ahead, the SPL and special education teacher suggested Jonathan become a "peer mentor" to other children who are struggling. This will take Jonathan's strengths and help him work on his weaknesses at the same time. He will have to articulate how he is able to solve the problem (verbal reasoning) and teach someone else without getting frustrated (pragmatics).

I LOVE it!!! I guess this is the reason why "teams" are a good solution for looking at special education and individual students. The input of various experts around the table resulted in a great solution which takes advantage of Jonathan's strengths and works on his weaknesses in a productive way.

I guess the only thing Scott and I didn't resolve was the question, "Does the 20 minutes of weeping and gnashing of teeth about having to do homework get counted in the 40 minutes limit for Jonathan's homework each night?" Personally, I think it should. Because I agree with Jonathan, he's already been in school eight hours, why does he have to come home and do more school work? He's the kid who has either "got it" or doesn't. Repetition and re-enforcement is "no value added" for him. But then again, homework is a fact of life and making him do something he doesn't like doing is preparing him for life.

I couldn't convince him last night that washing dishes and doing laundry is my "homework" which I don't like to do. "IT'S NOWHERE CLOSE TO THE SAME THING!!!!" He wailed at me. I beg to differ. I think tonight I'll propose to do his homework if he does my dishes and laundry.

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Jonathan's Future -- Part 4

"What do you see J doing one day with all his skills and talents?" This was the original question that set off a four part journey for me to dream and think about Jonathan. It was also helpful as I prepared for Jonathan's I.E.P. in a couple of hours.

I wrote about Jonathan's abilities and his obstacles in the areas of verbal, non-verbal and visual-spatial intelligences over the last few days. And after I've thought through all these things, I come to the same conclusion. I don't really know where I see Jonathan. I think he has an incredible amount of potential in many areas.

I could see him as a cartoonist. I think his Purple Man adventures are very humorous. I was about to write that he needs to develop his characters past stick figures, but "The Diary of A Wimpy Kid" series proves me wrong there.

I could see him as an engineer, scientist, mathematician, architect, etc. I don't really know what his limits in math are yet because he's yet to be challenged. I know he wants to be a jet pilot. Since he refuses to get on a roller coaster or do anything that's a little bit risky, I don't see him as a pilot...but he's still pretty young for me to rule that out. He's been consistent since 4 years old that he wants to be a pilot. His father knew what he wanted to do since he was three. And his father accomplished his goals.

I don't see him as a sports athlete, even though he has lots of athletic skills. He doesn't have the aggression or the drive. He is a student of sports. I could see him doing something in the sports arena...coach, trainer, sportscaster (if someone else wrote his copy). He has a beautiful singing voice, but he doesn't like to sing outside of a group of people.

He's helpful. He loves people. He's a natural encourager. He's quiet and doesn't go looking for friends, they all just seem drawn to him. He loves to read his bible stories and to pray.

You know, as I'm writing this I just realized that I could be writing about his father...And I also realized that if Jonathan becomes the man his father is, I couldn't be any more satisfied.

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Jonathan's Future -- Part 3

Yesterday I mentioned that I believe Jonathan has visual-spatial gifts. At the time I did a lot of research on this. Basically, people with this ability are able to picture things in their heads, to manipulate problems in their heads, to visualize in 3 dimensions, have good hand-eye coordination and some other things which I can't recall. People with this gift tend to be artists, architects, engineers and, interestingly to me, athletes.

One of the earliest examples of this gift being played out in Jonathan was when he was about two years old. He was running around the house in this really strange but familiar gait. His movements weren't smooth, they seemed to jolt. It took a few weeks before I could connect his movements to something else I'd seen, but couldn't immediately recall. Then I was watching Joshua play a PS2 game where the characters were not moving very smoothly, in fact they looked like they were being jolted. Jonathan was perfectly mimicking the movements of these video characters.

I read examples of how visual-spatial learners think. One child handled math problems with carry overs by picturing the number being placed in jail until it was needed. I don't recall the exact example, but another child pictured either letters or numbers on a roller coaster ride. In an early post, I used the example of Jonathan picturing digging through his mind to find a word he had trouble recalling and "refiling" it to a different place. When he did this he rarely has trouble recalling the word which he couldn't "find" for nearly three years.

One of the many assessments performed on Jonathan involved filing in the missing pieces of puzzles. Jonathan was in pre-school at the time. The school psychologist said the test is set up so that it keeps going to the next level as long as the child is able to correctly answer questions. She said Jonathan answered questions up to a level for ten year olds.

As I said yesterday, I looked into having him tested for this particular intelligence, but found out these tests are only available for children fifth grade and up. John Hopkins Center for Talented Youth did publish examples of the test questions. When Jonathan was in second grade I administered the pretest to him. He did pretty well.

Currently, I mostly see Jonathan's visual-spatial gifts in his ability to play sports. Starting in kindergarten I enrolled him in a special class offered by our local parks and recreation. It was designed to teach basic skills necessary for all sports to special needs children between five and seven years old. The instructor is a public school instructor for the visually impaired. He also coaches for one of the county's high school varsity soccer teams. When he's not doing one or the other, he's coaching younger children "able" and "disabled." His only child also has many special needs of her own. I think this is why he has the patience of Job. I think he also took some clowning classes because of the things he does to keep the attention of a large group of children.

After teaching Jonathan sports skills for two seasons, the coach told me that Jonathan is fast and would make a good soccer player. Since he's a coach for state ranked soccer team, since he coaches all sports year round and has lots of exposure to lots of kids, I feel like I can take this coach at his word. So we signed Jonathan up for soccer. It was a disaster. He was the child one corner of the field examining dandelions while everyone else as at the goal on the other end. Jonathan has the skills. Everyone once in awhile when he could focus, he could overtake the children running with the ball. He could be in the right place at the right time to receive a pass and kick a goal. However, at this age, the kids tend to beehive around the soccer ball. And since Jonathan is left-handed, he can kick a ball which is harder for a goalie to catch since most people tend to be right-handed.

We have a 15 foot trampoline in our yard. I can't remember when we first bought it, but it was very early on in Jonathan's diagnosis. He loves the trampoline. And he's been doing flips and interesting moves on it for years. He also spends a lot of time around the house and in the yard doing cartwheels, headstands, handstands and somersaults. I did a little bit of gymnastics when I was younger, so I'm aware of the "form" which should be taken when doing somersaults. I was amazed when Jonathan first started doing them as a toddler. He tucked his chin to his chest and did them perfectly. I asked Scott, "Did you teach him that?" Of course, Scott did not. I marveled at how Jonathan would instinctively know to tuck his chin and roll from the back of his head and not the top of it, as most children instinctively do.

So I talked Scott into looking into gymnastics. He wasn't keen on the idea for a couple of reasons. First, he didn't want Jonathan learning on the girl's equipment. Second, he was worried about Jonathan's attention span in a large class. Well, the Lord was watching out for us, as usual. Scott found a glass for boys which only allowed six boys. I had to take Jonathan in for a "try out." The gym Scott found is fully equipped for boys and girls and it is almost like a factory in turning out gymnasts. Jonathan was about five. He got into the gym and was inspired by all the equipment and activity. I had to stand in another room behind a glass, but I could tell that Jonathan was impressing the coach with his strength and coordination. At one point Jonathan did a flip right in front of her. I don't know why, because he was on the ground and he'd never done that before. Maybe he felt confident because there was so much padding on the floor. Anyway, her eyes popped out of her head when he did the flip. Then she calmly said, "That was very good, don't do that again until you're in the ten year old class."
After the try out she came to me and said that the class fills up on a first come first serve basis. She already has her maximum; however, his skills showed her that he needed to be in the class. So he was enrolled for a year until the coach quit. We were told we'd be called when they hired a new boy's coach, but we never got a call.

Jonathan was a little bit older and really wanted to play soccer. So we signed him up again. This time he is better able to focus. The ADHD meds might be a factor. He has the instincts of a defensive player. He knows where he should be. He's a little timid about the ball flying at him and boys bearing down on him. He's not his older brother, who is often the aggressor. Jonathan is also like his father, a student of the game. He'll quiz Scott on the plays and the ways.

This summer I finally found a private swim instructor. I'm embarrassed to say that Jonathan was nine before I got him swim lessons...although I've spent five years trying to find a private swim instructor, I'd have commitments, but they all fell through. (Since my grandfather drowned, swimming lessons at a very young age has been a high priority in our extended family.) I knew I needed private lessons because Jonathan didn't like the water for a long time. Then he liked the pool but only if our family was the only one in it. If there were others in the pool splashing, he'd get out. In the couple of years he'll stay in even if there are others in the pool but he still wouldn't put his face in the water. Scott really tried to work with Jonathan, but with little success.

So the private lessons were another gift from the Lord. Although family of two daughters and a mother only wanted to work with special needs children, the time Jonathan had lesson they had an opening. So we were able to get Faith one-on-one lessons too. At the end of the summer both children were ranked at "level two." Jonathan apparently had some "level three" rankings but not all the necessary skills to receive the rankings. While the instructor said that Faith was "creative" in her swimming, she had lots more to say about Jonathan. She said he had a "natural breast stroke and kick." She said it is the hardest stroke and kick to teach but Jonathan had it naturally. The following week, her mother had Jonathan for his last lesson. Turns out she is the county coordinator for swim teams. She also raved about Jonathan's breast stroke and encouraged us to sign him up for a swim team. I asked if I could put Jonathan in regular swimming class. She said he had the skills but not the attention span so she didn't recommend it.

In conclusion, athletics is another area where Jonathan shows a lot of potential; however, even on medications, his attention span prevents him from really meeting his full potential. Michael Phelps he is not...at least not right now.

Tomorrow I'll wrap up this "journey" which has been a very long answer to the question, "What do you see J doing one day with all his skills and talents?" But this has been a good exercise for me as Scott and I prepare for Jonathan's I.E.P. meeting tomorrow.

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Jonathan's Future -- Part 2

I shared yesterday how Jonathan's strength is in the non-verbal realm of intelligence. Right now we mostly observe this in his math skills, but I'm seeing things which make be believe he has visual-spatial intelligence too. I've read where we'll have to wait until he's in fifth or sixth grade to have him tested for this.

My first memories of Jonathan's math abilities where when he was around three and a half. He was adding single digits. I didn't think too much about him adding single digits. However, one day we were driving in the car (most of these burst of intelligence happen in the car for some reason). He called from the back seat, "Mama, what is 4 plus 4 take away 2?"

I learned early on not to always answer Jonathan's questions. Instead I ask him, "I don't know, what do you think 4 plus 4 take away 2 is?" He immediately said, "Six." Now I'm impressed that he's manipulating three numbers and adding and subtracting in the same equation. A few months later when I went to enroll him in pre-school and told the vice principal this story, he snapped his head back and asked, "What TV shows do you have him watching?"

That same year, Joshua was in sixth grade and starting algebra. Not to be overshadowed by his younger brother, he taunted Jonathan, "Yeah, but you don't know what 3 squared is."

Jonathan admitted he didn't know and asked for the answer. Then he asked how Joshua got the answer. For the next twenty minutes he quizzed Scott. I'll never forget this. Scott sitting on the bottom steps to the stairs leading up to the bedrooms. Jonathan sitting on his lap. "What's 4 squared?" Scott would say, "It is four four times." And then he and Jonathan would count on four sets of fingers to find the answer. They did this through all the single digits. By the end of the twenty minutes Jonathan had memorized the answer for squared numbers from 1 through 5, but could figure out the other numbers given enough fingers.

In second grade Jonathan asked me, while I was distracted, "Mama, what is negative 8 plus negative 8?" Instead of shooting the question back to him, I answered, "Zero." He said, "No, it is negative 16." I stopped what I was doing and thought about it. "You are absolutely right. Where did you learn this?" Since Jonathan started school, I've studies the state standards for curriculum for each of his grades, I knew negative numbers wasn't taught in second grade. He said, "I taught myself." This is his answer for a lot of his leaps in learning.

I happened to have a parent teacher conference scheduled. I asked his teacher about it. She was just as surprised. She thought about it for a few minutes and said that she was teaching number lines in math. She was also teaching thermometers in science and teaching about Celsius which has negative numbers. Once again, Jonathan had taken two concepts he was learning and made an accurate leap into another concept.

In our school system the kids are give "pre-tests" before each math and reading unit. Based upon the results of the pre-tests, the grade level teaching teams decide how much time they will need to spend on the unit. Half way through the unit they'll give another test. Based upon the results from this test, they will divide the students up into learning groups. One group needs more intensive teaching of the subject. One group might need just a little bit and another group has already mastered the material. This group will be given enrichment activities in the same material.

I've collected Jonathan's math pre-tests since kindergarten. He's gotten 100s on all but one. In that one case he received an 87. As I studied this test, he was able to accurately answer all the equations. His only difficulty was that he didn't know the actual symbols for "greater than" and "less than." He understood the concept.

Our school system doesn't have a "gifted and talented program." They have Honors courses which start in fourth grade. If a child is placed in the Honors program, they are on track for solid college prep courses by high school. My oldest stared honors in fourth grade and is taking all Advance Placement courses in his junior year of high school. However, there is nothing really for students who excel in any area...art, music, science, reading, writing, math.

Every year I go into the I.E.P. meeting and ask how they are going to challenge Jonathan in the area of math. Every year I'm told that they don't have a gifted and talented program but they do try to meet each and every child were they are at (the word they use escapes me at the moment...Ah, I remembered before I finished this entry...differentiate). Every year, I say something to the effect of if they did then Jonathan should be taking math course above his current grade. In my mind what more proof do they need than their own "pre-tests" to know that Jonathan has already mastered the material for his grade. It seems logical to me that if a child receives a 100 on every pre-test except for one (and even this had a logical explanation) this is a good indicator that he's mastered the material before they've even taught it. Even now he's in honors, the equivalent of skipping fourth grade math and jumping into fifth grade math and he's still bringing home 100s on his pre-test.

Here is where we get into Jonathan's weakness. Just like in reading, Jonathan is not "fluent." Or in the school's lingo he lacks "automaticity." He can't memorize his math facts. He can't quickly spit out seven plus five is 12. He has a mental block against this particular math fact. Nor does he do well on timed multiplication quizzes. It doesn't seem to matter that he understands why seven times seven is forty-nine (it's adding at a faster rate) or that he can eventually figure it out (given enough fingers or other tools). Most kids can memorize these facts but not know how to get to them if they suddenly had a mental block. It doesn't seem to matter that at age eight he already understands the calculus concept of "Will you ever reach the wall if you only ever go half way to it?" "NO, you'll never reach the wall, the half size only get smaller and smaller." (This still blows my mind.) He understood the concept of infinity when he was three. He wanted to know why you could never reach the end of the number line but you could get to the end of the alphabet.

In first grade, when his lack of automaticity began to show up, we talked to a learning specialist in the school. She was helpful and provided lots of activities to do over the summer, but she began to really annoy me. I thanked her for all her help but asked, "Is it possible that the school will come to the point that he'll never have automaticity but allow him to skip some math grade levels?" She would always launch into the stories of how kids might do well in calculations but not understand the concepts and therefore it is not recommended that they skip grades. They need to understand concepts. The story she would always use was, 'I work with kids and math manipulatives. I can use the exact same number of cubes, such as 24 and I can add and subtract cubes from the pile, but the child has to keep recounting how many cubes are in front of him."

So that summer, I bought some cubes and began playing with Jonathan. I had twenty four cubes and arranged them into different math facts. First I arranged them into three rows of eight. Then I arranged them into two rows of twelve. I arranged them again. This time he said to me in a bored voice, "Unless you are adding or taking away from the pile, the answer will always be twenty four." I wanted to go into the learning specialist and tell her to take that and smoke it in her pipe, especially since he hadn't started learning about multiplication yet.

Unless I'm called in for jury duty and sat on a jury, this week is our I.E.P. I believe we are finally past all the excuses they've given me in the past for why they can't challenge Jonathan in math...he know knows all his math facts, he's now reached fourth grade in which they offer "honors," and they are supposed to be committed to "differentiating" teaching based upon the child's needs.

My proposal...give him the next grade level math book and let him sit in the back of the room and work through it at his own pace. This is what a school system did for his father until he reached middle school and high school and his class schedule allowed him to take the appropriate math courses for his abilities.

The only question will be if Jonathan's ADHD will allow him to work through the material without being redirected. Sometimes, if he's doing something he likes, he can be very focused. What's the harm in trying?

Keep your fingers crossed with me.

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Jonathan's Future -- Part 1

Earlier this week I asked for some questions. One question I received was "What do you see J doing someday with all of his skills and talents?" This question came from my Writer's Worship assignment for the week. Ironically, Nancy uses the word "prompt." Boy did this prompt a lot of thought and writing.I started "free-writing" and my answer turned out to be quite long. So I decided to break my answer down into several posts. Here is the first part of my answer to the question.

I honestly don't know where I see Jonathan. He's incredibly smart, talented and skilled. But he also has some major obstacles to overcome. He's been given about four different IQ tests which consistently show him to be one point below or one point above "superior" in the area of non-verbal skills. We've been told that we can observe this in his ability to do math, science, make great leaps in understanding concepts, visualize in three dimensions, and think "outside the box."

He has "two standard deviations" between his highest and lowest IQ scores. For those who don't remember basic statistics (which I don't), two standard deviations is "statistically significant." We've read/been told since his highest scores are in the non-verbal realm and his lowest scores are in the verbal real, his overall IQ test score is probably not an accurate reflection of his true intelligence. The overall IQ score averages the nonverbal and verbal scores. So if you take 100 add 130 and divide by 2, you'll get 115. In this particular test, a score falling between 100 and 114 is considered "average" a score falling between 115 and 129 is considered "high average" and anything over 130 is considered "superior."

A number of psychologists have written that a person with a high nonverbal score and a statistically significantly lower verbal score should be considered more intelligent than the average of the two scores. The reason they state is IQ tests depend upon a certain amount of verbal abilities when answering questions. In Jonathan's case, he'd have to understand idioms, unwritten social rules and standards and that language can be both literal and figurative (these are just some explanations of why he might have difficulty on the verbal section, not all the reasons).

So, if we want to believe our private specialists, Jonathan's statistically significant score between verbal and non-verbal scores is an indication that he has a "verbal learning disability." This seems to be consistent with what we observe at home. I don't think Jonathan is average when it comes to his intelligence. Below I've given some examples of his verbal intelligence. But I do believe he has weaknesses which obscure his ability to communicate his intelligence. The most obvious areas are in his reading and writing skills. To a lesser degree in his ability to "pull up" or quickly access the appropriate words.

Anyone who has spent any time with Jonathan will know that he's not average when it comes to verbal concepts. What three year old is aware that people speak other languages in different parts of the world? (What three year old understands there are other countries in the world?) He would quiz me on “How do you say this in Spanish?” “How do you say this in French?” “How do you say this in German?” “What language do they speak in that country?”

Around four years old he began majorly stressing about idioms he didn’t understand. His speech therapist said most kids his age “don’t even hear idioms.” She said that they “hear them but don’t understand them and just ignore them.” She said a sign of Jonathan’s intelligence was the fact he recognized these idioms didn’t make sense and he had to know what they meant. And if he didn’t find out, he’d try to make his own mind up about what they meant, which led to some stress. (There is a wonderful series of books called “Parts” by Ted Arnold which illustrates a boy’s horror as he imagines idioms. Jonathan laughed hysterically when we discovered these books. Just picture “Eyes glued to the television, your parents asking for your hand, and the cat having your tongue.)

Jonathan’s verbal weakness is in the details. Reading was a struggle. Reading fluently was even more of a struggle. He’s a very creative speller. He has difficulty writing down his thoughts. He can articulate them if you take dictation, but he can’t translate them on his own. I think he has dysgraphia, but I haven’t been able to win that battle at school. The school has conceded “in the future” he’ll probably need someone to take his dictation or the use of assisted technology but so far “the future” is not very well defined. All I know is that it’s apparently not this year (nor last year, nor the year prior).

For the first few years of Jonathan’s school experience, he received lower grades because he couldn’t read “fluently.” There is a tool which counts how many words a child reads correctly within an allotted time. The tool also has children read “nonsense words.” I believe “nonsense words” are common letter combinations which reinforces phonics. Jonathan had a horrible time with “nonsense words” because, of course, the words weren’t real and made no sense, duh. Our private educational consultant said Asperger’s children seem to intuitively know these words are “nonsense” and don’t fit in their paradigm. “What’s the point of reading unreal words?”

I applaud all the research done which has broken reading skills down into small and measurable parts. So “reading fluency” is an early indicator of reading comprehension, which makes sense. (I only included the link because I like the graphic explanation of the reading processes; however, I'm not making any comment on the rest of the website.) If a child spends a lot of time decoding words, they aren’t spending much time on understanding the passage. So the more words that children know immediately should indicate more time spent on understanding the material.

Somewhere along the line I began to believe that Jonathan comprehends what he was reading, even if he was a slow reader. I don’t recall if I came to this conclusion based upon my own observations or upon different assessments. (Jonathan has been assessed, tested, observed and evaluated every year of his life.) Regardless, I began asking, “Is it possible that reading fluency is not an effective measure for Jonathan?” For years I didn’t get an answer. Then in second grade, a specialist did say that reading fluency was not a good measure for Jonathan as he does comprehend even though he doesn’t meet the fluency standards.

The question then became, “Then is it right to continue marking Jonathan’s grade down because he’s not meeting the fluency standard? Why are you basing his grade on his inability to meet the standard of the tool which is only supposed to help you understand whether or not he can accomplish the higher task...comprehend what he’s reading?”

For two years the basic answer I received is that all the students are measured upon their ability to read fluently. That’s when Scott and I decided that we will probably have to adjust out thinking about the grades Jonathan brings home. For our other two children, the grades are a good indication of their understanding and ability to meet the school’s standards. For Jonathan, we aren’t going to expect grades to accurately reflect Jonathan’s abilities.

In summary, on the one hand Jonathan seems to be beyond his peers when it comes understanding language. On the other hand, his execution is below the level of his peers. (His school will tell you differently. However, they will admit that he'd be doing much worse if I didn't spend as much time as I do working with him.) Tomorrow I may talk about his natural athletic abilities or his great math instincts. Then I'll talk about his creativity and energy. In each of the posts, I'll share his strengths and what I believe are the obstacles to overcome. In the final post, I'll summarize and give you the answer to the question...where do I see him in the future."

Hope you'll join me in the journey.

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More Literalness

In Yesterday's post, I wrote an example of the conversations we have with Jonathan because he's so literal. I asked people to write questions so that I can do my Wednesday Writer's Workshop assignment. Just so save you some time, I've copied the assignment here.

Your prompt:

1) Take something you have written and ask a person, or several people, to ask some questions related to the piece. Don't give the questioners too many parameters--just let them ask what they ask. (If you don't have something written, tell a story out loud and ask for questions).

2) Choose the question or questions that strike your fancy. If they are elaboration or clarification questions, blend them into your original piece to make a second draft. If they are journey questions, complete a free-write or draft a snapshot based on that new question. See where the query takes you.

3) Review-Revise-Share

"What happened to precipitate this particular conversation between you and Jonathan?" This is a clarification question. I didn't give enough information. (No one actually asked this questions, but I wanted to give an example of this type of tool.)

"What other ways has J's literalness created tension or humor?" This is an elaboration question. I need to add some more examples of how Jonathan is literal all the time and not just this once. So here are some other examples of of conversations we've had in the past:

Statement: "Jonathan, please sit in the chair." Response: "How does someone sit 'in' a chair?"

Statement: "Jonathan, please take these downstairs." Response: Several hours later I find the item on the floor at the bottom of the stairs.

Statement: "Jonathan, please return the chair to where it came from." (In my mind, the kitchen table.) Response: "I can't. I don't know which store you got it from. And I don't drive so how am I supposed to get it there?"

Statement: "Jonathan, hold your horses." Response: "What horses? I don't have any horses."

One would think that he's being disrespectful and/or talking back. And now he's smart enough and old enough to know that his first interpretation is literal and we probably meant figuratively or we misspoke. In fact, he did go through a period when he was about first grade where he would actually ask, "Do you mean literally or figuratively?"

At times it can be really annoying to have to spell everything out...to be forced to think about correct usage of the English language. Joshua finds Jonathan's literalness to be especially aggravating. ("He knows what we mean!") And other times it can be amusing to be forced to stop and think about how much of what we say doesn't really make any sense.

"What do you see J doing someday with all of his skills and talents?" This is a journey question. Here is my chance to dream and to write freely. I'll answer this question tomorrow.

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Finding Loopholes

I don't know what I'm going to do in a few years when Jonathan is smarter than me (I'd like to believe right now that I'm still smarter, but that might be a false belief).

Because he's so literal, because we’ve had this conversation daily and because he wants to debate, I told him, "Jonathan, put all four legs of the chair down on the floor."

He asked, "Can you write that down so I can find the loophole?"

"Do you know what a loophole is?"

"Yes, it is when someone makes a mistake that you can take advantage of," he didn't articulate it this way, I can’t remember his exact words, but this was what he was saying.

"And where did you learn about loopholes?"

"On iCarly."

I turned to Scott and said, "And they say TV is not educational."

The conversation didn't end there. Jonathan played with my sentence in his mind since I wouldn't write it down. He thought about it for a few minutes.

"Ah, ha! You said THE chair. I can move over to this chair." which he did.

"Please sit in any and all chairs at all times with all four legs of the chair on the ground," I replied.

Jonathan disappeared and came back with a small plastic step stool. "You only said chairs."

I said, "I don't care if you sit on only two legs on that, if you can. I only care about you going through the glass kitchen window or you breaking my chair."

Here is another way he's too clever. He's become more than aware of my blog about him. He found it on the Internet. He's "following" it. And yesterday, I found this comment at the end of the other comments...you'll have to check it out. I think he's funny.

Now on to my Wednesday Writer's Workshop assignment. Please ask me anything about THIS post and I'll respond to some of the questions in a day or two.

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Writing

Unlike his mother, Jonathan hates writing. Unfortunately for him, he has to write for homework. His school has what they call "Reading Response Journals." All students from pre-k through fifth grade are expected to read a certain amount of time at night and then write a response in a journal. Their response is supposed to be how what they read relates to themselves, another book they read, or something they know about the world around them.

Over the years we've handled the "Reading Response" in different ways. We've made him "suck it up" and do it. It's just a part of life, doing things we don't like doing. I've written his response for him (because the teachers were more interested in "his connections" than in his writing). Then we've had him type his response, I've printed it out and taped it into his journal. Each year we've talked to the teacher about how we'll handle the homework.

This year we haven't had that talk yet. The IEP meeting is scheduled next week. Last week I wrote his response for him. Yesterday, I was being stubborn and refused to write it for him. I had a sudden flash of me writing his homework the rest of his academic career. I didn't like it. So I gave him a choice of typing it into his "AlphaSmart" or writing it himself. After much weeping and gnashing of teeth, he decided on the AlphaSmart.

He completed his homework and walked past me sulking. He said, "My homework is under a file named 'ihatehomework.'" Sure enough when I went to print it, that was the file name.

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Perfect Combination

Today you'll see two post for the price of one. Rhemashope commented that she'd like to see a picture of Faith's hair. So I put some pictures in the post below this. First of all, please check out Rhemashope's blog at Autism In a Word. It is very well written and it will make you laugh and make you cry. Next, for those who have read about Jorge, you'll see a picture of him below. We teased him that he was made for our family. First, because he and Josh look so similar, for seven months, Josh didn't look out of place amongst Jonathan and Faith. Of course, we told Jorge he couldn't talk or he'd give away our secret (his Spanish accent). Also my three "sons" all had names that started with "Jo"...Josh, Jonathan and Jorge. (Of course, Jorge's name is not George but 'Hor Hey' and he was quick to point out that I never did pronounce it correctly...But he didn't hold it against me. I said it was too hard to swallow my tongue on the 'o' and then immediately roll my 'r.' It wasn't natural.

Okay, back to my regularly scheduled blog...about Jonathan and raising a child with Asperger's, ADHD, Anxiety Disorder.

As we began to find out about Jonathan's diagnoses, Scott and I began to find out a lot about ourselves and each other. Unfortunately (or fortunately) for Jonathan, he not only got a combination of our looks, he got a combination of our own idiosyncrasies. I'll tell on me first. I have all the sensory integration issues. Noise and activity levels are my issues. There are times when I just want to crawl out of my skin I can't take the noise and/or the activity level around me.

Joshua's first home soccer game is a perfect example. I wanted to see my son play in his first home varsity soccer game. Scott and I loaded up the family and went to the high school stadium. It was hot and humid. I think I'm beginning menopause so heat is really bothering me lately. So I'm already in a foul mood. Faith is whining, which is knocking my patience meter down a few more notices. We get to the field and they are blasting this hideous music. Now my insides are wound up tighter than a twisted rubber band. We sit down in the stands and all I can pay attention to is the constant movement of teenagers going up and down the bleachers greeting one another and going to the concession stand. I took an umbrella to shield me from the sun's rays beating down on me. But the sun was still too bright. Fortunately, the music stops during the actual game. But Faith continued to whine. I'd like to say I calmly told her to go sit by her father. But I think I snapped it at her. I was so tense and so aware of every little thing, that I didn't enjoy the game at all. And to top it all off, the coach didn't play Joshua at all.

Sometime early on, Scott went online and took Tony Attwood's checklist for adults. Scott was one point away from the range of scores to suggest that he has Asperger's. When Scott was younger he memorized statistics for every baseball player in the major league and the next league down. He knew the finest details about the U.S. space missions. He knows everything about football. How did our neuro-psychologist phrase it?...Oh, yeah..."One of the symptom's of Aspergers is an affinity for worthless information." (Of course, Scott and some national sportscasters might disagree.)

Scott has some rigidity too. I remember when we were first married. I told him that we were having tacos for dinner. But I didn't have the correct ingredients so I changed the meal plan. Whoa! Believe me, I've never done that again. A few months ago I had the nerve to take some trash to the dump. I thought I was helping him. It totally threw him off that I'd done that. He's not as rigid as Jonathan, but every once in awhile I'm reminded that the apple didn't fall far from the tree.

As far as social interactions, Scott would tell me at the beginning of our marriage that he preferred one-to-one or couple to couple interactions and not large groups. He said it was hard for him to figure out how to get involved in the conversation. One of Jonathan's Speech and Language Pathologists told me, "Conversations are like rivers. Some are slow and meander down stream. Others are rapid. Conversations also ebb and flow. Most people instinctively know how to jump into the river without being swept away. Asperger's don't naturally understand the ebb and flow of conversations. They tend to stand on the bank and not attempt to get in or they jump in and take over." I find this to be true of Scott. The most frustrating thing for both Scott and I comes to the arguments between me and Josh. One will blow up and Josh and I'll be rapidly exchanging words and then the argument ends. I'm mad at Scott for not jumping in and he's still trying to figure out what just happened.

Earlier I said that it was unfortunate or fortunate that Jonathan has parents with some of his idiosyncrasies. I'm sorry that he has them at all. However, it does help us to understand him and advocate for him. I totally get why he can't always function in the classroom. He complains about the A/C blowing, the pencil sharpener, the curve in his chair, the smell of waffles cooking in the cafeteria, the rolling of trash cans down the hallway, the humming of the boy next to him, the feel of socks on his feet...I know what it is to be overpowered by sensory input and not be able to concentrate on anything else.

In turn, Scott can reach Jonathan when he's being rigid or melting down. When I don't know how to deal with Jonathan, Scott will step in and smooth over the situation. When everything is calm again, I'll say, "What did you do?" Scott will tell me what Jonathan was thinking or feeling. And Scott will end with "I get it, because I'm just like him in that respect."

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Just For Fun

Here's probably the best picture of Faith's hair. If you could grab a handful, you could see some strands are red, some are white blond and some are strawberry blond. Her hair dressers always comment that women pay a lot of money to get the highlights she has naturally.



Here is a picture of all "my children." Josh is the curly haired one. In this picture Jorge's hair is short enough that it looks straight. This picture was taken in the Spring. I love Faith's expression!




This is last Christmas. Between the last photo and this you'd think that Jonathan and Faith have the same color hair. They really don't. Jonathan's always shows up darker in pictures. When I show people this photo they ask, "Do you have twins?" They do look alike, don't they?

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His Father's Son

I have two children by Scott. Jonathan and Faith. When I was first pregnant with Jonathan, people would ask us, "Do you know what you are having?" Before we did find out it was a boy, we'd answer, "We aren't sure of the sex, but we are pretty such its going to have red hair."

My side of the family has strawberry blond or auburn red hair in every generation on both sides of the family. Scott's family has the orange red hair (for the lack of a better description) on his father's side. In fact, at our wedding reception I looked out over all the people had never met and would say to Scott, "That one must be related to you." Now, on my side of the family, we tend to keep our strawberry and auburn red color until it turns grey. On Scott's side, the red hair generally turns brown in the late thirties and then to grey. There are a couple exceptions. I write this because most people will look and Jonathan and Faith and ask, "Where did the red hair come from?" Because mine is a darker blond than when I was younger and Scott's is brown. (Although if you care to closely examine Scott you'll see his eyebrows and arm and leg hairs are still the orange red his head used to be.)

Jonathan's hair started off the auburn red from my family but quickly has turned more blond than red. It depends on the season. The winter there is more red in it than in the summer. Faith's hair started off and remains the beautify strawberry blond, more red than blond. Her's doesn't change with the seasons. Her hair reminds me of the phrase "spun gold." I've never seen spun gold, but as I brush her hair, I imagine that it would look like her hair color.

Anyone who knows Scott will automatically know that Jonathan is his child. In fact, when Jonathan was first born, and the doctor was examining him, before we even got to see him, the doctor looked at Scott and chuckled, "You aren't going to be able to deny he's yours."

When Jonathan was a couple days old and I went into the nurses' station to visit him (his vitals weren't stable so they kept him with them instead of in my room). I picked him up and held him to my cheek. "Your nose is cold just like your daddy's," I said to him. The nurse was across the room filing out a chart and burst out with a laugh. She said, "I'm sorry, but I've never seen an infant who looked so much like his father."

Faith, on the other hand, looks just like me. No one would depute the fact. My parents had a portrait painted of me when I was a toddler. It hangs in our guest room. All my kids swear it is Faith, except for the fact that I had white blond hair growing up.

So, by now you get the fact that my two children with Scott look like us. I tell people that their hair color is a combination between my white blond (as a child) and Scott's red (as a child).

Then there is Josh, who is my oldest by a previous relationship. He looks nothing like me. He looks nothing like our family. He's tall, with dark and curly brown hair and darker complexion. (We all have straight hair, small to average height and pale complexions. The only thing we all share is blue eyes.) Except for the fact that he was the only 10 pound baby in the preemie ICU, I'd swear he was switched at birth. And unfortunately, people don't really think before they ask him, "Where did you come from?"

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Too Cute

One of the things I love about Jonathan is that he's usually very positive (when he's not controlled by his Asperger's). He uses words like "awesome" and "great" when talking to and about people. While he can be my most difficult child, when his Aspy ways kick in, he's also my easiest. I wonder if it has something to do with being the middle child? He wants to please. So I generally find myself asking him to do things for me rather than my other two, who are more strong-willed and defiant.

"Jonathan, go clean up the basement for me."

"Got it."

Jonathan, can you go outside and pick up the toys and trash in the yard?"

"Got it."

Jonathan, walk down to the neighbors and walk Faith back please."

"Got it."

Unless he's being Aspy, I never hear the words I generally hear from my other two. I don't hear "no" or "why can't you do it?" or "i don't want to."

This morning I overheard a precious conversation between him and his sister. I'd braided her damp hair the night before because I decided braiding it at night might help with the rats nest in the morning followed by the weepy and gnashing of teeth as I comb it out.

As I'm coming down the stairs, I hear Jonathan in the kitchen, "You look cute today. I like your hair wavy." (I have to admit she did look cute with her iCarly shirt, plaid pink shorts, pink socks, pink Hannah Montana, and wavy long strawberry blond hair and just a smattering of freckles across the bridge of her nose. I could just eat her up.)

As I'm going through my morning routine, he takes care of her by getting her a bowl from out of her reach and pouring cereal for her. No fighting or tears this morning. Just a typical 1960s TV family day.

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The Calendar Said It Was Saturday

Saturday I announced to Jonathan it was time to take a bath. He said, "Okay." I said, "You have to wash your hair." He said, "Okay." I said, "I'm going to cut your nails too." He said, "Feet or hands?" I said, "Both." He said, "Okay."

While he was in the bathtub, I went into the office to check the calendar. It is Saturday, isn't it? I used all those bad words "bath" "hair" and "nails." There was no blood curdling scream.

After the bath was over I announced, "Okay it's time for nails." He said, "Feet first." Okay, I'll do feet first. Then he said, "Left foot first." Okay. As I'm clipping his nails, I said, "Jonathan, I really appreciate not having to chase you around the house and your not screaming when I said it was nail day."

He looked at me, "Oh, is that what I forgot?" And he was ready to start running. I caught him and said, "No, that's okay. I don't need you to do that."

Just now I asked him to go upstairs and brush his teeth. He said, "Okay" and did it.

Who are you and what have you done with my son?

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Obsession with Guitars

Jonathan at two years old

During the time of Jonathan's initial diagnoses, he was obsessed with guitars. Everything was a guitar...hangers, salad dressing bottles and pots. At the time of his picture he was just beginning to talk. After Mama, Dada, Jo and Fa, he could say "guitar." I don't remember how we started this game, but I'd get out a piece of paper and a crayon and he'd say, "Guitar." I could draw only draw two kinds...one resembled an electric and one resembled an acoustic. I probably drew a thousand guitars during that period of time.

He would take his guitar to church and mimic the Worship team guitar players. That's what this picture is about. That Sunday Mr. Pete, the music leader, introduced some kind of box in front of his feet. I don't know anything about music. And I didn't notice Pete had this new toy until Jonathan started mimicking it. We got home Sunday from church and Jonathan immediately went into the basement rummaging around until he found his daddy's old Match Box car case.

Then the case came upstairs to my kitchen, to where Jonathan had previously established his stage. Again, although I watched the Worship team week after week, I never really noticed the things that Jonathan did. But after Jonathan started bringing a second guitar to the stage, I noticed that Pete had two different guitars. When he played one, the other rested against the wall. During the service, he'd put one down and pick up the other. Thus, you see Jonathan has one guitar he's playing with the other one resting up against the wall (that would be the frying pan).

You can't tell from this picture, but there are black marks on my walls from where the guitars rested. Every night I'd put my frying pan back in the cabinet, the Match Box case and the toy guitar in the basement. Every morning they'd be back on stage "where they belong." It was an on going battle until he lost interest in guitars and moved on to computers.

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Stay tuned....

I'm planning on writing something today. I'm waiting for my husband to scan a photo from those days pre-digital. Check back before you to to bed tonight.

:-)

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Ugh...Do We Really Have to Do Homework?

I needed a few days to be able to complete my Writing Wednesday assignment this week from Nancy. Building a scene with Thoughtshots, Snapshots and Dialogue is the challenge. I'll follow Nancy's lead and put my thoughtshots in italics, my snapshots in bold and dialogue will be in quotation marks. Here we go....

I sat at the dinner table as Jonathan and Faith finished up their dessert. Scott was putting food away and loading the dishwasher. Joshua had already eaten and disappeared to do his homework, I assumed. I discovered last year if I didn't sit at the table with Jonathan and Faith, it signaled the meal was over and they were free to run around. Of course, that's not what it signaled, but that's what they thought.

Sitting in my chair, I took in a deep breath in the same way I would as my roller coaster car crowns the steepest hill in anticipation of the steepest drop and being whipped in every direction for the next three or four minutes.

"Jonathan, after dessert it will be time for homework," I finally said bracing myself for the wild ride. There, that's the drop to signal the ride has begun.

"NO!" he wailed.

"Yes," I said calmly, although my insides are twisting tighter and tighter.

"Whhhyyyy do I have to do homework? The guy who invented homework needs to be drug out into the middle of the street and shot."

Oops, there goes another figurative body to the middle of our street to be added to the decaying bodies who've been shot for inventing things Jonathan doesn't like. I'm glad they are figurative. Otherwise the smell would be intolerable.

"They assign homework to remind you of what you learned in school today," I said hoping my voice didn't betray my disagreement with the methodology.

"But I just spent eight hours in school. I haven't forgotten what I learned," Jonathan tried to reason with me.

"Jonathan you can't remember who you sat with for lunch," I shot back.

"Well, I spend eight hours in school everyday. I only spend four hours at home when I'm not asleep," he tried a different approach.

I hear you, Buddy, but it's not my rules. You need to be making these arguments to the school board. "I'm sorry, Buddy, I don't know what I can say."

"But I don't like homework."

"We all have to do things we don't like, it's a part of life." Like argue with you about homework every night, I add to myself.

"But I don't want to..."

"Jonathan, you know how Daddy has to work? At his job he sometimes has to do things he doesn't want or like to do. Your job is to go to school. Your job until you're 18 is a student and you have to do homework."

"What if I don't do my homework?"

I'm becoming weary of this conversation. "Well, let's talk about it. What will happen if you don't do your homework?"

"I'll get zeros."

"And if you get enough zeroes you'll get bad grades. If Daddy doesn't work he doesn't get paid. Your pay is good grades."

Jonathan let out a sigh and picked up his spelling notebook and started writing.

Wow. That worked. I'll have to remember that one tomorrow.

Oops. I think I was supposed to balance out the elements. Oh, well. I'm going to leave it. I'm running out of creative brain cells after arguing with the kids all week. I know from reading other blogs, I'm not alone.

On the other hand, NFL games started last night!!!! I have two Fantasy Football Teams. I think I'm going to have a winning year. And if Dave is still following this blog, "No, thanks. I'm keeping A.P. (Adrian Peterson). I'll take my chances. Call me foolish."

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Three Weeks and not getting easier

This is Jonathan in the morning...a sloth.

Getting out of bed, getting dressed, eating and out the door for the bus, Jonathan's movements are so imperceptible. I check on him every five minutes. He's still in the same position as the prior five minutes. And yet he swears he's moving, getting dressed, etc.

We are in the third week of school and I can't get him moving. I've tried having my husband wake Jonathan up (for the first time) just before he leaves for work. I've gotten up earlier to wake Jonathan up earlier. (Which is difficult for me, because I'm usually the last one up, left to my own devices.) I've bribed...I mean tried to modify his behavior with rewards. I've threatened him...I mean I've tried to give him consequences for the behavior I want to see disappear. I'm at a loss.

And morning is the hardest time for me. I already hinted that I'm not a morning person. I have no patience. My brain (I can't think of what the medical term is for the electrical currents which flow through the brain to make it work)...isn't firing yet in the morning. It starts about noon each day. So I have no ability to creatively implement solutions. Yesterday, I ended up calling my husband at work and asked him to reason with Faith, who was paralyzed. She couldn't make a decision about which shoes she was going to wear to school. She couldn't even dress up to the point of shoes she was so stymied.

I keep telling the medical providers that Jonathan needs a pump, like diabetics have, so that his ADHD medication can be administered to him an hour before he wakes up. That way, maybe he'll stay focused on the task at hand and move a little faster than a sloth. Maybe I need the same pump to administer caffeine an hour before I wake up...if only caffeine did wake me up like most people.

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Jorge -- Part Two

Thanks, Nancy, you were right. The answer to the question I had at the bottom of my last post "D) All of the above." I'll have to get you a cup of coffee (since I read your blog yesterday where you didn't have a drop in the house.)

The first time I questioned myself about the wisdom of having an exchange student in the house with Jonathan was during the "in home interview" with the Rotary Youth Exchange regional coordinator. He sat across our kitchen table and outlined our responsibilities and the Rotary's commitments. Then he asked if we had any questions.

Suddenly, I realized we were going to have a teenager from a different language and different culture in our house. This is one of those moments when an old saying comes back to me, "Never doubt in the darkness what the Lord has shown you in the light." I momentarily forgot that I wasn't doing this because of my own wisdom but because of the Lord's wisdom.

"I feel we need to tell you up front that our middle son is high functioning autistic. Most people wouldn't really know that he is. But if you live with him, you'll know. Before you bring Jorge here, you might want to let him know that he can expect Jonathan to run around naked, have wetting accidents, have meltdowns, and all kinds of other non-typical behaviors."

The coordinator told us that he didn't think it would be a problem. He'd been a part of the exchange program for a number of years and found that exchange students often have an affinity to those host families who have special needs.

The next time, I panicked was the second day Jorge stayed with us. We didn't have a chance to sit down and talk with him the first day. He arrived on a typical day of chaos in our home (which, in hindsight, was probably a great way to introduce him to our home). All the younger neighborhood kids were in our home, about a dozen between the ages of six and 12 years old. Even though it was January 3rd, it was a warm day, so the kids were running in and out of the house. Jorge's previous host family arrived at our front door and introductions were made. The exchange was quick. As Scott is taking Jorge out the garage door to collect his worldly belongings from the car, Josh's high energy friend comes to the front door, three hours early for Josh's 16th birthday party. Jorge basically brought in his things and dumped them in the room he'd be sharing with Joshua and immediately started hanging out with Josh and Thomas, both of whom Jorge knew from the high school soccer team. When the 16th birthday party ended at 10 p.m. and two dozen teenagers left the house, Jorge began to unpack his suitcases. We told him that we'd be getting up early for church in the morning and invited him to come along. I'll never forget the picture of Jonathan and Faith sitting in the doorway (because there was no room in the bedroom the teens were sharing) watching Jorge unpack. They were fascinated with Jorge and his accent, but they weren't ready to talk to him yet.

After church, at lunch, was the first time we had to talk to Jorge about house rules, expectations, chores, etc. All these things we were required to do based upon our commitment with the Rotary. Fortunately, Jorge had already been in the country and with the program for about four or five months and knew the process. After we got the formalities out of the way, I began to explain Jonathan to Jorge. His eyes grew wide, but he said all the "right things" in response. We told him that Jonathan doesn't like to wear clothes, but he knows he's supposed to stay in "the naked zone" when he's running around in the buff. We've declared his bedroom and the bathroom the "naked zones." However, Jonathan will swing on his chin up bar and we're are exposed to the full Monty when this happens. At the point Jorge arrived, Jonathan was in a regression, so he had a lot of toileting accidents. We told Jorge what to expect and how to respond. Jorge had the "deer in the headlights" look to him, but it was hard to say that it was all because of Jonathan. As I said, Jorge arrived in the whirlwind of a typical weekend in our house. And the next day school started back up from Winter Break. Also, the previous family didn't have any children still at home and they both worked full time jobs. Jorge went from a nice quite and calm household into ours. We're used to it, but when we have visitors in our home and their eyes get big or they make comments about all the activity in our house, we are once again reminded that not everyone lives like we do.

I think it was even that very night that Jorge seemed to start bonding with Jonathan. Josh was on the computer in the shared room, so Jorge went into Jonathan's room and sat beside him as Jonathan read a book. Jonathan and Faith have to spend between 30 minutes to an hour in their room doing quiet activities before "lights out." How much time they get depends on how quickly they've completed the bedtime rituals. For most of the next seven months, it was not unusual to see Jorge in Jonathan's room during this quiet time. They'd silently read a book together, play chess, play PS2, or play on the computer.

The last time I wondered if it was the "right thing" to host Jorge was as his stay with us was coming to a close. Jonathan was making more and more comments about Jorge's imminent departure. Actually, Jonathan started making comments even half way through Jorge's stay with us. I wanted to remind him that Jorge wasn't going to be with us forever. Jorge's parents and older brother came to visit the U.S. during Spring Break. And we met the family. After they left, Jonathan would say, "His family saw him." As if that was enough and Jorge didn't need to return home one day. The other comment was, "Jorge lived with them for 16 years, he can live with us three or four." As the time grew closer for Jorge's departure, Jonathan would say, "Jorge, no, no go." He'd repeat this over and over again.

What made Jorge's departure a little easier was that Jorge took a month long trip around the U.S. and then came back a couple days before returning to Spain. Also, Jorge spoke to his parents via Skype every week. We promised that we could talk to Jorge via Skype after he returned home. And, so far, Jorge's been really regular in his contact with us via email. (Our main computer for using Skype crashed so we haven't set up the two-way live communication yet.)

Just before Jorge left, and Jonathan was lamenting his departure, I asked, "Jonathan, would you rather have met Jorge and said goodbye, knowing that we'll be able to keep in touch with him or would it have been better not to meet him?"

Jonathan said, without hesitation, "I'd rather have met him and said goodbye. Otherwise I wouldn't have known such an awesome person."

Now I'm glad that I didn't rely on my own wisdom when these panic attacks came on. I would've never experienced Jonathan's mature response, I would've never met Jorge (whose become like another son to me) and I would've never been reminded once again the wisdom of the Lord when he says, "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:8-10

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