What Are ADHD and Autism? A Movie

Our family made this video to share in our kids' class at school.

Glad Summer's Here...I Think

Boys' Summer Handbook: When bored, start a fight. Hand-to-hand combat is great, but almost anything can be turned into a weapon. For instance, see towels in the above photo.

Our kids have attended three different schools because of family moves. Up to this point, we haven’t really had any conflicts with our schools about accommodations for our kids. I feel like we’ve dealt with people who really loved our kids despite their sometimes difficult behaviors. I feel like people have tried to help our kids deal with their shortcomings and offered support. But our present school has been a struggle. It’s hard to know who’s driving decisions--principals, other administrators, teachers, other parents--but from what I can tell, the principal does not want Luke at her school. It’s a great school for many reasons: test scores, extra activities, tons of parent involvement, but it is a little too perfectly, perfect, and they don’t seem to have room for coloring outside the lines.

We survived last year at this school because Luke’s teacher was so patient and kind. He did have some meltdowns and a suspension or two (I lose track!). But his teacher was so positive and helpful. The special ed teacher was awesome last year too. This year his teacher wanted him to do things her way, and she did not take kindly to when Luke resisted. She didn’t really seem to accept that he was struggling with his own difficulties, but saw it as a struggle against her. I guess I don’t know really what was going on in her mind, but she seemed to see her relationship with Luke as a battle of wills.

I’ve talked about this before, but Luke’s intelligence plays against him sometimes. Academically, he is so smart that teachers and administrators can’t or don’t believe he has social, organizational, and focus difficulties. I told his teacher at the beginning of the year that it is difficult to not take his disobedience or rebuffs personally. He’s smart. He knows what he’s doing, so it seems he must be doing it with malice. But he’s not. He’s impulsive, he’s slow on emotional control, he’s easily frustrated. When he’s done something wrong, in hindsight, he knows it’s wrong, but that doesn’t stop him from doing it at the moment. His teacher and principal dislike him and don’t have a disability mindset. That can’t see the struggles he goes through. They just think he’s naughty. Insolent. A pain in the butt.  Extra work. They don’t have time for him. They want to move him to a “learning center,” which is the district’s euphemism for a behavioral unit. I don’t have anything against behavioral units, but they are usually reserved for kids whose disabilities are much more severe than Luke’s.

This year Luke got an in-school suspension for tearing up a leaf and saying, “This is what I would do to Jill’s* head if I could.” A mean, naughty, threatening thing to say. It makes me sad to hear that he says things like that. No mom wants their kid to say things like that. But to get suspended for it? No other student in the school would be suspended for that, and how is that accommodating for his poor emotional control if they suspend him for stuff like that? It’s comparable to punishing a child with dyslexia for making a spelling mistake. And now that I’m getting in to my rant mode a little, let me just add that he gets picked on and talked down to and bossed around and treated like he’s intellectually disabled much of the time. The principal’s solution is to tell everyone to keep away from him. Kids have told him that they’re “not allowed to play with him.”

On the other hand, the very fabulous, accepting, smart, kind, and all-round amazing school psychologist, has tried to counteract some of these very uncreative solutions. She went in to the classroom and taught the kids social skills and how to interact with one another. She’s trying to help them understand one another, and that they all have weaknesses—some people’s are just a little more obvious (wink). We need to help all kids fit in and get along with various types of people NOT ostracize them. That’s an appeal to the heart, but the appeal to the mind is just as strong. Our families and communities are only as happy, healthy, and thriving as each individual is.

I got a little ranty there. But we did find some solutions and are making some progress in making life better for Luke and our family. More to come.

*Names have been changed.

Teach Kids Resilience

https://www.youtube.com/watch?v=isfw8JJ-eWM&feature=youtube_gdata

Peter the Apostle Had ADHD

Caravaggio's Crucifixion of St. Peter

Happy Easter and Passover (or whatever you may be celebrating this weekend).

With all the news about the new pope and with Easter coming up, I have a spiritual/religious/ADHD message for today:

Peter the Apostle had ADHD.

In church the other day, someone was retelling the story of Christ walking on water. The apostles were in a boat during a storm on the Sea of Galilee, and Christ walked out to them. When Peter saw him, he hopped out onto the roiling waters and tried to walk toward Christ. He took a few steps, got scared, and started to sink. Jesus rescued Peter and calmed the waters. “Pretty impulsive,” I thought. “Sounds like Peter had ADHD.”

And then I thought about some other famous St. Peter stories. He was told three times in a row by Jesus, “Feed my sheep.” (Wonder what he was like getting ready in the morning.) Peter slashed off the ear of a man who was arresting Jesus, but Jesus calmly told Peter to put his sword away and immediately healed the man. Peter fell asleep when he was supposed to be on watch in the Garden of Gethsemane. Peter told Christ he was ready to go to prison and death with him, but soon after denied knowing him.

When Christ was washing the feet of the apostles, Peter refused, thinking it was too lowly a task for the Savior. When Christ implied it was critical, Peter said essentially, “Okay, then, wash my head and hands and feet.” I think Peter probably provided Jesus with a lot of good laughs—patient and good-hearted laughs, as in, “Hang in there Peter, it’s all going to be clear to you one day.”

The thing is, Peter was a pretty good guy, an amazing human. If Jesus’ right-hand man had ADHD, it can’t be too bad.

After Christ died, Peter seemed to grow into his responsibility, and his ADHD served him well. He preached the gospel despite threats and arrests. He famously said to his accusers, “Whether it is right in the sight of God for us to obey you rather than God, you be the judges. It is impossible for us not to speak about what we have seen and heard.” He preached the equality of the Gentiles. He journeyed around the Mediterranean, speaking to all kinds of people. In the end, he was purported to have died a martyr, crucified upside down at his request because he did not feel worthy to die the same way as Jesus. He is a hero of Christianity, who—in my humble opinion—probably had ADHD for a reason.

"No" on the Letter and Buzz, A Must Read

Lots of energy in our house.

Well, the principal and teacher do not want to pass along our letter to parents of children in Luke’s class because they feel it would “add fuel to the fire.” Some parents have actually complained about having Luke in the class and want him out. I’m not sure whether they are saying that Luke is disruptive or aggressive, but I don’t see either one as being an overarching problem in the classroom. Yes, I understand it might take time to deal with Luke, but it takes time to help a child who is struggling with reading or a child who is hearing impaired. Should we kick them all out? We wouldn’t have a class left.

So the principal told me that this letter would just make other parents more concerned that their children were being deprived, and that they wouldn’t care about my son’s rights to appropriate education. I really didn’t know what to say after that, so I just left it. I could find the class parents and deliver the letters on my own, I guess. Not sure what we’ll do next.

Next subject. I am reading the book, Buzz: A Year of Paying Attention by Katherine Ellison. “A hilarious and heartrending account of one mother’s journey to understand and reconnect with her high-spirited preteen son—a true story sure to beguile parents grappling with a child’s bewildering behavior.” –from Amazon

The mother and son are both dealing with ADHD, and I love Ellison’s honest and funny take on their life. And she explores every avenue of ADHD treatment that I’ve ever wanted to look into. I’ll let her visit Dr. Daniel Amen and get a brain scan so I don’t have to—unless she says it was worth it.

The book is fabulous. I read a review of it a while ago that wasn’t particularly glowing, so I didn’t rush out and get it, but I’ll tell you to rush out and get it. It may be that I relate well to their situation, but I think anyone dealing with ADHD can find some gems of wisdom and black comedy in there.

For instance, Ellison has a little epiphany about how her son’s behavior is exacerbated by his own stress and is not just a ploy to destroy her sanity—something I have to remind myself over and over again:

“Suddenly, he’s no longer my persecutor, the rebel lashing out against a weakened foe, the spoiled symbol of everything that’s going wrong with American youth, the painfully public proof of how Jack [her husband] and I have screwed up as parents.

“He’s just nine years old. He’s getting scolded at home, and teased, rejected, and reprimanded every single day at school. His mother is unhappy, her behavior erratic….

“On top of all this, he has just learned that he has something wrong with his brain.

“He’s scared. And he’s calling 9-1-1 for help.”

Do you relate?

A Letter to Parents in Our Son's Class

This is how he feels about everything except screen time and ice cream.

Parents have been complaining about the problems Luke is causing in class. So we decided to write a letter and ask the teacher to forward it to the parents. Don't know if she will or not. We'll see. I say that a lot.

Dear Parents,

Hi. Our son Luke is in your child’s class. Some of you are likely aware that Luke has been involved in some problems in class and on the playground recently. We would like to apologize for any hurt or frustration he has caused.

In addition, if you are interested, we would also like to take this opportunity to explain a little bit about Luke’s disabilities. We hesitate to tell others about Luke’s disabilities because we don’t want him to be negatively labeled or teased, but we hope that offering some information may help the situation. 

Luke has been diagnosed with attention deficit hyperactivity disorder (ADHD) and some behaviors of Aspergers Syndrome (this is often referred to as high-functioning autism). Though he often seems like a fairly typical child and does well academically, he has impaired impulse control, social skills, and sensory processing. He also has difficulty handling conflict and changes in his routine or environment and is still adjusting to moving to a new school.

We know that Luke’s behaviors can be antagonistic or immature. His skills have improved over time, but he still struggles to a degree that can sometimes be disruptive. Luke's challenges have helped our family learn a lot about getting along with people who are different or who have disabilities. They often have unique gifts. We hope you will see Luke’s presence as a learning opportunity for your child.  We understand there is a good deal of skepticism and misperception about autism.  We often don’t know what to think ourselves.  Though Luke’s disabilities can’t always be seen, we hope you can try to understand that his challenges are real, and no one feels them more acutely than he does. 

We work with Luke outside of school and receive great support from specialists at the school. The patient Mrs. Jones helps him track his behavior throughout the day. He is making progress, and we will continue to address any problems. If you think this information may be beneficial for your student, please feel free to share a basic explanation of Luke’s challenges. 

Thank you for your understanding. Please fell free to call us if you have any questions or concerns.

Have you ever sent a letter like this?

Focalin, Suspension, Help from the School District

New medication for both kids, so I’ve gotta keep track. It’s sort of unexpected that we changed medication. We have tried the kids on several things, and I felt that they were using what worked best. But then a little catalyst of change came up. In December, Luke was suspended for three days for hitting another boy in his class.

Got that call from the principal, “Mrs. Larson. There’s been an incident with Luke.” The first time I got that call, I was in tears. The second, I was really stressed. The third I just sighed and rolled my eyes. Kind of an "Oh boy, what now?" But it turned out to be worse than an eye roller.

So I met with the principal about the incident and got a lot more info. The kid had teased Luke and tattled on him. Luke had hit him--but he's no boxer. I worry more about his bark than his bite. It seemed that this meeting was really a "we don't know what to do with your kid" meeting. I realized that things were not going as well as I thought at school. Luke has a tracker that his teacher signs and sends home, and he was earning rewards almost every day. He did have some problems with other kids that the teacher had told me about, but things were definitely worse than I perceived. 

My husband and I met with the principal and vice principal again the next day. Things just seemed to get worse. They brought up the option of putting Luke in a Learning Center, which essentially means a smaller classroom for kids with behavior problems at a different school. We were shocked to hear that. DH about lost his mind and brought a law suit after that meeting.

The next day Luke, my husband, and I went to one meeting with the district “Safe Schools” administrator and another with the case management team. The people at the district were very understanding and helpful and reassuring that they wanted to help Luke and not kick him to the curb. But we did get the idea that they had gone a little overboard with Luke's suspension. They termed it an “assault.” And Luke had to sign a general behavior contract that I’d say is usually reserved for tough high school kids. It mentioned arson, theft, vandalism… Luke started to read it and said, “What’s sexting?” The administrator pushed the paper right up to Luke’s chest and said, “Just sign the bottom here.” Luke cuddled a stuffed dog in one hand and signed with the other.

So we were at one of those points of desperation where we felt like we’d do anything to help Luke and make the situation at school better. I asked our pediatrician Dr. Dave about trying different meds, and he suggested Focalin. We had tried it several years ago and decided against it since it made Luke sleepy but thought we’d try again with a super low dose. So we switched both Luke and Izzy and started with a very low 5 mg dose for Luke and 10 mg for Izzy. Izzy obviously needed more, and we gradually increased her dose to 20 mg. We then tried her on 27 mg of Concerta, which is also a methylphenidate, but she seemed to get a little over-the-top crazy on that. So we are sticking with 20 mg Focalin for both of them. I think it might be working better than the Vyvanse. But since this is all so subjective and mixed in with the emotions of a desperate mother and father, it is hard to know. We are also trying to figure out if they need a little short-acting, after-school dose.

More details to come on help from the school district, an in-class aid, school psychologist and special ed teacher changes, and finding an outside psychologist.

A great message for moms who are trying their best.

Et tu, Wyatt?

Just another day at the zany house.

First few weeks of school. Izzy has been trying to adjust to an uber-organized, high standards teacher. She had a horrible day yesterday, forgot her homework, yelled at the teacher, kids were trying to help her get back on track, but she felt like they were “bossing” her around.

We made sure everything was ready to go this morning, and I reminded her 17 times not to doodle and to pay attention so she would know what to do and to write her assignments in her planner and that she had to bring her planner, her folder, and her keyboarding paper home each night. Poor child. I didn’t really tell her 17 times. It was more like 17 attempts at delivering this information while she was actually listening.

So tonight when we said the blessing on the food, she said, “Thank you that I finally had one good day in the last two weeks.” I tried not to explode with joy and said, “What happened today? Why was it good?”

She said, “Even though I really wanted to, I kept myself from doodling, and then I heard everything that I was supposed to do, and I wasn’t confused.”

Wow. I wanted to do cartwheels all the way to Australia. Instead I said something textbooky like, “That was some really good self control. I’m glad you had such a good day. Way to go.” Textbooky may sound stilted, but it’s usually better than what would automatically roll off my tongue, so I go with it. I try to be really positive with Izzy.

Any how, triumphant day, and I’m going to roll in it! …Oh ya, for two seconds, because on this very same day I ran into Wyatt’s teacher and she told me that he couldn’t sit still for his reading testing today and that he scored rather low. When I said I knew he couldn’t sit still and mentioned ADHD in the family, she subtly asked if anyone was on medication. That was probably illegal. And then she casually mentioned that some kids just do so well with it…and some kids don’t. I’ve heard that before. Yes, I’ve heard those words before, Oh Wyatt, Wyatt, Wyatt. Et tu, Wyatt?

Do these teachers know that we are screaming inside when they drop these little hints? Do they know we want to just fall on the floor crying? Do they know our heads are splitting and our hearts are breaking? Do they know I want to say, “Okay, no big deal. I think I’ll put my kid on an amphetamine, also known as a psychostimulant, that may stunt his growth and cause sleep problems and can be addictive. What the heck.” You know, I don’t even mean to rip on this teacher. I’m sure that she struggles and frets with these “spirited” children and sees improvements when some of them start meds. I’m sure that she sees some of the challenges alleviated. I’m sure that she sees children who probably need meds and parents who don’t give them meds. I know she has her struggles too.

But for me, she has taken my dreams and thrown them in the river and waved good bye, “Hey, I hope it wasn’t too rough parting with your idyllic thoughts of raising this beautiful boy. Buh bye. Ya, new life paradigm. Get up to speed, Mom.”

What Is PDD-NOS?

HIking at Bryce Canyon. Amazing.

I'm compiling some info for our teacher who hasn't had any autism spectrum kids in her classrooms--or as she said, "any who are diagnosed."

•PDD-NOS (pervasive developmental disorder not otherwise specified) seems to me (and to doctors and anyone else who seems to write or talk about it) to be very similar to Asperger's or high-functioning autism.

•Individuals often have average to above-average intelligence.

•Difficulty with social skills and friendships. This can be the greatest challenge. They may want to make friends very badly, yet do not have a clue as to how to go about it. Identifying 1 or 2 empathetic students who can serve as "buddies" will help the child feel as though the world is a friendlier place.

•Difficulty using and interpreting gestures, judging proximity to others, and maintaining eye contact, all of which may impede the development of personal relationships.

•Because of an intense interest in one or two topics, the individual may talk at people instead of to people, disregarding the listener’s interest or attention. Although individuals may make efforts to socially interact with others, their unusual manner may leave many people not knowing how to respond. The person with Asperger’s syndrome may then be left misunderstood and isolated.

•"Swiss cheese" development. Some things are learned age-appropriately, while other things may lag behind. For example, a child may understand complex mathematics principles, yet not be able to remember to bring their homework home.

•Difficulties with transitions. Needs advance notice if there is going to be a change or disruption in the schedule. Let child know, if possible, when there will be a substitute teacher or a field trip occurring during regular school hours.

•May get overstimulated by loud noises, lights, strong tastes or textures, because of the hightened sensitivity to these things. With lots of other kids, chaos and noise, if needed, help the child find a quiet spot to which he can go for some "solace." May need to fidget or chew things.

•Unstructured times (such as lunch, recess and PE) may prove to be the most difficult for the child. Please try to help provide some guidance, a friend or extra adult help during these more difficult times.

•Allow the child to "move about" as sitting still for long periods of time can be very difficult (even a 5 minute walk with a friend or aide can help a lot).

•Although vocabulary and use of language may seem high, AS children may not know the meaning of what they are saying even though the words sound correct.

•The perspectives of the AS child can be unique and, at times, immovable.

•Can be dysgraphic and unable to listen to you talk, read the board and take notes at the same time.

Goals for the New School Year

Aaaaaaahh! School is starting soon. That was an "aaaaaaahh" of both excitement and dread. Excitement because I wouldn't mind ten seconds to myself, and the kids are excited to see friends and enjoy the fun parts of school. We are all dreading the not-so-fun parts of school. But I have some goals to help us all start out on the right foot.

1. Review IEPs and be on the ball to get accommodations going.
2. Meet with new teachers, school psychologist, special ed. teacher, and principal before school starts.
3. Create "Notes" for the new teachers describing the three most difficult behaviors they may encounter and how to deal with them.
4. Bring a beginning of the year gift/bribe to teachers.
5. Talk to the kids individually about their concerns and how we can make it a great year.

Let's see what I actually get done. I'll report back.

The Beach Bakery. Yummy, um, but not for real.

Tools for Anger Management

Summertime!

Here are some notes from an anger management class that we went to. The kids made some cards and illustrations of their feelings and reminders too. 

Izzy said her mind is like a garbage disposal. It gets all clogged up and full of garbage, and she has to run the disposal to clear it out and think calmly again. Great analogy!

TRUTH—No one can make me angry. I choose.

3 Rules of Anger  Don’t hurt self, don’t hurt others, don’t damage property.

Look at it differently.  Seeing things from other perspectives (remember the guy whose kids were out of control?—his wife had died). Sometimes understanding another point of view is helpful in decreasing negative emotions.

4x4 breathing—deep breathing can help calm the body. Breathe in slowly to the count of 4 and out to the count of 4.

HALT Hungry Angry Lonely and Tired We don’t make good decisions when we are feeling these feeling.

Emotional Brain to Logical Brain—When we are feeling emotional, we can use counting or thinking things to pull us out of our emotional brain and into using the frontal cortex. We can then think through our situation.

REMEMBER anger is a secondary emotion. We FEEL something before we get to anger. It may be frustration, embarrassment, disappointment, intimidation, sadness. When we can put a name to our feelings and realize what situations trigger these feelings, we can help reduce negative results.

1, 2, 3 feelings back  Ask your child what feelings they had that day. Many times children have felt many other feelings, but can not name them or explain what they are feeling. If we help them learn different words to express their emotions, they will be more able to healthily express their emotions.

Actually Doc…

Gets tired in the late afternoon sometimes, but I think switching the timing of Intuniv and starting Vyvanse has helped with that.

Took Luke to the doc for a checkup since he has started Vyvanse (lisdexamfetamine). Notice the amfetamine. My babies are on amfetamines. This all seems soooo counterintuitive.  And even though it does help, it still scares me. Have I said that before? Anyway, I’m happy that our move has taken us back to Doctor Dave, my husband’s brother who is an awesome pediatrician. And it was a classic Luke interchange.

Doc: “So do you think these new pills are helping?”

Luke: “Well, the pills don’t stop my meltdowns, they just give me more power to stop my meltdowns. Like if my brain is a bomb about to go off, the pills let me hack in and give me a couple extra minutes to disarm the bomb.”

Doc: “So you’re doing better with the meltdowns?”

Luke: “Ya. I haven’t had one since the Pinewood Derby.”

Mom (had to clarify a little): “The Pinewood Derby was last night.”

And later:

Doc: “So do you know what the Chill Drill is?”

Luke: “No.”

Doc: “When you feel like you’re going to have a meltdown, you imagine that you’re a penguin standing on ice. Breathe in some cool air, imagine your head cooling down, your feet cooling down. You just chill.”

Luke: “Well actually, that is the exact opposite of what penguins do. They try to maintain body heat and they huddle together to keep warm and hold their eggs on their feet to keep the eggs warm. They even have blubber to help them stay warm.”

The nurse and I looked at each other and tried not to laugh. Doctor Dave, patient as ever, went along with some Antarctic discussion and a new glacier metaphor.

The good news is that Doctor Dave saw a marked change in Luke since our last visit. Dave said the last time we visited, Luke wouldn’t even engage, but this time he talked a lot, and they had a good exchange. Small triumph. Better—I didn’t say perfect—social skills.

So for the record, we’ve changed both Izzy and Luke’s medications again. Nothing huge, but we’ve increased dosages. They’ve gone from 25 mg to 37.5 mg of Zoloft, their anxiety med. I’m giving them a pill and a half, since I’m wary about jumping right up to a double dose. I know they’ve been taking these meds for a few years now, and I know the dosage often increases as they grow and gain weight, but I’m still cautious. Who knows if they’ll take these meds off the market in 20 years and say, “Oops, we just realized that those drugs are causing brain tumors.” That may seem paranoid to some people, but in my mind those kinds of things happen all the time. So the smallest dose that helps is my mantra.

We also increased Luke’s dose of Vyvanse from 5 mg to 10 mg. Still a negligible quantity, but Luke and stimulants can be a scary combination. He just metabolizes the drugs like gasoline on fire. I was worried that he wouldn’t sleep on the 10 mg dose, but he fell in to bed and off to dreamland no problem. I think taking the Intuniv at night, riding his bike to school, and playing baseball are all helping with that. Baseball is another story for another day…

Is Intuniv Causing Weight Gain?

I learned a new word this year, communited:  a fracture in which bone is broken, splintered or crushed into a number of pieces. Observe my lovely clavicle.

This is just one of the many reasons I haven’t blogged for a million years. Moving a few times has something to do with it too.

But this blog is my own personal record of the kids’ medications, doses, timelines, etc., and since we’ve changed Luke’s meds, I’ve got to get it on the record. 

The impetus for me feeling like we should consider changing meds was his weight. He started wrestling this year, and I was surprised when he weighed in at more than most kids his age. In the last half year or so, he has gone from a pretty skinny kid to the 92 percentile on the weight scale for his age. Such a quick gain didn’t seem healthy. I don’t think there’s a significant difference in how much he has stared at screens. He’s always had as much video, computer, and television as I would possibly allow him, but I’m pretty strict. I could only think of two things that could be the cause: school lunch or Intuniv.

Kinda skinny, right?

I’m really not a fan of school lunch. I used to buy it for the kids only once or twice a week. But things have been so hectic, I’ve succumbed to the easiness of an online payment. And I’m still doing it, despite my concerns! Gotta get life under control here and make lunches…

Here we have a mountain man in the 4th grade history play. Not quite as lean, and I don't know why. Could this just be his body changing in prepubescence? (I've always hated that word.) Changes that might go unnoticed by others always have a way of freaking me out because I'm paranoid about having my child take drugs. Yes, they help him, but in the back of my mind, the worried dialogue careers. Wait a minute, I've noticed a change!! Is his body composition changing?! Is he more lethargic?! Is something bad happening to him?! Aaaahhh, save the neurotic mother and the lab-rat child.

I knew that weight gain was a side effect of Intuniv, (not listed on the official Intuniv web site but on other sites), so I decided to talk to our pediatrician about it. I have also felt like Luke has become more and more lethargic and wondered if that was a side effect from Intuniv. It is an antihypertensive (lowers blood pressure) after all.

So our pediatrician suggested we try a stimulant again. I busted out my records and told him that even with the smallest doses of Vyvanse, Focalin, or Daytrana, Luke was completely buzzed and wouldn’t fall asleep. So we talked back and forth trying to decide on a new treatment that might work better. We decided on trying a teeny, tiny dose of Vyvanse in the morning and keeping the Intuniv but at a smaller dose and giving it to him at night before he goes to sleep. Intuniv is supposed to last for 24 hours, so the time you give the dose shouldn’t really matter, but my pediatrician explained that there is an arc to the release of the drug, building up in the system and tapering off. So he told me to just give it a try. You know, experiences with infertility, cancer, and ADHD have taught me that that’s what medicine comes down to anyway—give it a try. I’ve probably mentioned that before.

So Luke is now on 5, yes, 5 mg of Vyvanse a day. The smallest pill available is 20 mg, so I have to open a capsule and divide it into 4 parts. It ends up as barely a breath of white powder in the bottom of a cup. It seems almost ridiculous, but I have read that some people can metabolize medicine so quickly that they can only take small doses. Maybe that’s true for Luke.

We tapered the Intuniv down from 3 mg to 1.5 mg (half a pill) and have been giving it to Luke before he goes to sleep. We also give him a dose of melatonin. He does have a hard time falling asleep if he doesn’t have the Intuniv, so I don’t know that we can completely eliminate it.

I haven’t noticed a ton of difference in his behavior, though his school teacher thinks he is doing better. He has still had some meltdowns at school but fewer. That’s where we are for now.

Interesting Autism Research--May Relate to ADHD

Here's one of Izzy's illustrations for a school report on fairy bluebirds. She loves to do 3-D illustrations with paper. I love to see what she comes up with. What she's lacking in social skills, she makes up with creative skills!! 

My friend has a son with autism and she is super active in finding new treatments and alternative treatments, researching, and doing all that it takes to help her son. ADHD is not an autism spectrum disorder but has many similar symptoms and perhaps similar causes. I thought I'd post this article that she sent me. It's really interesting. I'm always fascinated by anything twin-related, too.

Study: Environmental Factors May Be Just as Important as Genes in Autism

By Alice Park Tuesday, July 5, 2011 

Autism is undeniably influenced by genes, but a new study suggests that environmental factors may also contribute significantly — more than researchers previously thought — to the developmental disorder. In fact, environmental factors may play at least as big a role as genes in causing autism.

Dr. Joachim Hallmayer, a psychiatrist at the Stanford University School of Medicine, and his team report online in the Archives of General Psychiatry that shared environmental influences may account for as much as 55% of autism risk, while less than 40% can be attributed to genes.

The study modeled risk, but did not specify which environmental factors were at play. But other research has implicated increasing maternal and paternal age, low birth weight, multiple pregnancies and any medications or infections to which an expectant mom is exposed during pregnancy.

Autism, which affects at least 1% of children, is a complex disorder, so it's no surprise that both environmental and genetic factors contribute to its development. But in recent years, experts have focused intensively on the genetic components of autism; with the availability of more sophisticated tools to analyze genetic changes and development of disease, researchers have identified important clues about autism's roots in DNA.

But the rise in autism spectrum disorders has occurred too quickly to be explained fully by genes. And scientists know that genetic changes don't occur in a vacuum. Such aberrations, combined with non-genetic factors, may offer a fuller picture of what causes the disorder.

To determine how much either factor may contribute to autism, Hallmayer's group analyzed identical and fraternal twins, in which either one or both were diagnosed with autism or an autism spectrum disorder. Identical twins share identical genetic makeup, while fraternal twins are only as genetically similar as any two siblings. So by comparing the prevalence of autism between the two groups, the scientists were able to determine with relative assurance how much genes and shared environment contributed to the twins' conditions.

The study found that the likelihood of both twins being affected by autism was higher among identical than fraternal twins. That suggests that genetics plays a key role in the disorder. But importantly, the chance of both twins being affected by autism was not low among fraternal twins, which is counter to what would be expected if genetics were the dominant factor.

The study also found that autism rates among both identical and fraternal twins were higher than in the general population. That further suggests that environmental factors, probably shared by the twins as early as in the womb, contribute significantly to causing the disorder. "The fact that both groups have elevated rates suggests that something is making the two groups of twins similar to each other," says Neil Risch, director of the Institute for Human Genetics at University of California San Francisco and senior author on the paper. "Whether it occurs in utero, during childbirth or soon thereafter, we can't differentiate. But it suggests that something environmental is causing the twins to be alike."

Risch notes that the results do not discount genetic factors by any means. "It's not either-or in terms of genetics or environment," he says. "We're not saying autism isn't genetic, because the huge majority of twins don't have autism. Obviously something is priming the risk, and it looks like that may be a genetic predisposition. So a genetic base and environmental factors together may explain autism better."

The risk in twins with a genetic vulnerability may be triggered by being a multiple, for instance; something about the more crowded uterine environment may contribute to a greater chance of developing the disorder, Risch notes.

The good news is that as researchers better understand the environmental factors that are responsible for autism, the more some of these factors may be modified to help lower the risk of the disorder. A fuller picture of the spectrum of both genetic and non-genetic contributors to autism may also help lead to more effective ways to treat it.

• 
  
• Read more: http://healthland.time.com/2011/07/05/study-environmental-factors-may-be-just-as-important-as-genes-in-autism/#ixzz1RFCA4jKQ

The Fun of Moving

He fell asleep with the fish still biting his fingers.

I haven’t written anything for a couple of months. We are moving in 2 weeks and life is hectic. Has it been hard on my kids? Let’s see, Luke was suspended one day for hitting, and the next week I found myself on a conference call with the principal, his teacher, and the teaching director because his behavior is tanking and they don’t know what to do with him. His teacher is amazing. When she can’t deal with him, I know something is wrong. So what did I do? Sent him to Grandma and Grandpa’s for a few days. I’m just lucky he has amazing grandparents.

I have lots of stuff to blog about that I’ve been learning lately, so I hope I’ll get back to it soon. For now, I’m just going to share a Luke quote that Grandma shared with me.

Luke was running around and got all sweaty. He wiped his brow, looked at Grandma, and said, “I’m sweating like a sinner in church.” Where does he get this stuff?

Gifted? ADHD? or Both?

She just gives off a "brilliant" vibe.

Disclaimer: One of my children is gifted, maybe two. But I’m not bragging. It has nothing to do with me, and it comes along with a lot of social/emotional baggage. So please don’t think I think I’m cool or that they are geniuses.

Okay, I’ve got a whole new angle to analyze—the gifted thing. I knew Luke was gifted, but I just thought that meant he could read like a demon when he was barely out of diapers. And I knew Izzy was gifted in some areas, but once again, I just enjoyed her intricately made 3-D paper emperor moth creations and tried to ignore the miles of scotch tape stuck to my desk. But my school just started a group for parents of gifted children, and I felt like I should learn a little bit more about gifted education—especially because I always seem to be focusing on the kids’ ADHD struggles. After just one meeting, and reading one chapter of our book, I realized just how misunderstood giftedness is, especially by me.

I didn’t realize the social and emotional implications of giftedness. And I didn’t know that “Twice Exceptional” is an actual term for those who have exceptional talents and learning disabilities at the same time. I just thought it was the name of a blog I had noticed on a mom's view of adhd (and had never taken the time to look at). Well, now I have checked it out. According to the twice-exceptional (2e) web site: “This term refers to the fact that some gifted children are exceptional both because of their strengths and because of their limitations. Coupled with high intelligence, these children also may have one or more learning disabilities, attention deficit, emotional or behavior problems, or other types of learning difficulties.” 

So I had a little moment of clarity at my parenting group, thinking, “Ah ha, there’s actually a name for Luke’s condition. He is 2e, gifted and ADHD at the same time, and Izzy may be too.” But then the group leader started talking about how so many gifted children are misdiagnosed as having ADHD and how so many of the characteristics and social/emotional symptoms cross over. And the other parents started talking about how they refused to accept the diagnosis of ADHD for their children, and had taken them to 5 different doctors, and would absolutely not give their children drugs, and had taken them out of regular school and home schooled them, etc. etc. Well, all the old guilt and confusion washed over me for a while. How did I know that the kids had ADHD and were not simply gifted children whose social and emotional needs weren’t met? Are their drugs really working or is it just a placebo for me and their teachers? If the signs are the same, then how can I ever tell if they are gifted, ADHD, or both?

After I got home, my husband talked me off the ledge, and I did some yoga breathing. I realized I didn’t need to make any huge changes in my kids’ lives because things are going fairly well right now. But I will continue my little journey of discovery, and if it turns out that they are gifted and not ADHD, then we’ll change course. Unfortunately, I can’t figure everything out at once, but I’ve just got to accept that with a little Zen patience I think.

Here are some myths and truths about gifted children:

Common Myths About Gifted Students

*Gifted students are a homogeneous group, all high achievers.

*Gifted students do not need help. If they are really gifted, they can manage on their own.

*Gifted students have fewer problems than others because their intelligence and abilities somehow exempt them from the hassles of daily life.

*The future of a gifted student is assured: a world of opportunities lies before the student.

*Gifted students are self-directed; they know where they are heading.

*The social and emotional development of the gifted student is at the same level as his or her intellectual development.

*Gifted students are nerds and social isolates.

*The primary value of the gifted student lies in his or her brain power.

*The gifted student's family always prizes his or her abilities.

*Gifted students need to serve as examples to others and they should always assume extra responsibility.

*Gifted students make everyone else smarter.

*Gifted students can accomplish anything they put their minds to. All they have to do is apply themselves.

*Gifted students are naturally creative and do not need encouragement.

*Gifted children are easy to raise and a welcome addition to any classroom.

Truths About Gifted Students

*Gifted students are often perfectionistic and idealistic. They may equate achievement and grades with self-esteem and self-worth, which sometimes leads to fear of failure and interferes with achievement.

*Gifted students may experience heightened sensitivity to their own expectations and those of others, resulting in guilt over achievements or grades perceived to be low.

*Gifted students are asynchronous. Their chronological age, social, physical, emotional, and intellectual development may all be at different levels. For example, a 5-year-old may be able to read and comprehend a third-grade book but may not be able to write legibly.

*Some gifted children are "mappers" (sequential learners), while others are "leapers" (spatial learners). Leapers may not know how they got a "right answer." Mappers may get lost in the steps leading to the right answer.

*Gifted students may be so far ahead of their chronological age mates that they know more than half the curriculum before the school year begins! Their boredom can result in low achievement and grades.

*Gifted children are problem solvers. They benefit from working on open-ended, interdisciplinary problems; for example, how to solve a shortage of community resources. *Gifted students often refuse to work for grades alone.

*Gifted students often think abstractly and with such complexity that they may need help with concrete study- and test-taking skills. They may not be able to select one answer in a multiple choice question because they see how all the answers might be correct.

*Gifted students who do well in school may define success as getting an "A" and failure as any grade less than an "A." By early adolescence they may be unwilling to try anything where they are not certain of guaranteed success.

Adapted from College Planning for Gifted Students, 2nd edition, by Sandra Berger.

http://www.hoagiesgifted.org/eric/fact/myths.html

The Secret of Motherhood

Love this quote I found on
a mom's view of ADHD 


Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be. ~T


From a book called The Water Giver. Better read that one.

Luke Gets Contacts

At one point I was laughing so hard that I was crying. Then of course, it deteriorated into real crying, for Luke at least, and I had to retreat into “Remain calm, be patient, be stable for him” mode.

Luke got glasses about a year ago, and he’s worn them, um, maybe six or seven times. When he doesn’t forget them, he loses them. When he does remember them, he breaks them. It all adds up to a lot more finding and fixing than actual wearing. So we went to the optometrist and asked him what he thought about contact lenses for a nine-year old. He said, sure, he was old enough.

Before the exam, the doctor asked if Luke was on any medications. I told him that he was on Zoloft and Intuniv. I didn’t mind telling him. I felt like it would probably explain some of the behaviors he would be witness to in the next few minutes. Yes, my hunch was right. As the doctor had him look at the eye charts, Luke began with his questions and observations galore: “I can’t see what that is. Are they letters? I can’t see any of those letters. Is that a P? No an H? Wait, a J? I still can’t see, even though those letters are bigger. They are just blurry blobs to me. These are like wearing my glasses right? Are there any bigger letters? Is that the biggest letter? I’m glad I can see that because we are running out of letters. That is an E. That is very easy to tell that is an E. At least I can see that E. I really do need glasses.”

It got better. The doctor told him that he could try contacts, and he was going to put them in for Luke the first time. To which Luke replied, “No, I don’t think I’m comfortable with that. I don’t want you putting your fingers into my eyes.” I got a surprised look from the doc, but I just smiled and stayed quiet. I’ve learned to let the professionals take care of things until they can’t. Then I step in. I don’t want to step in too early though.

The doctor was great. He said he understood but that it would be much easier for Luke if he did it the first time and showed Luke how to do it. “Alright then,” Luke gave in. What occurred next seemed strangely familiar. Both because I have seen Luke act like this before and because it was like I was watching reruns of Will Farrell skits. Before the doctor even put the contact in Luke’s eye, Luke was saying, “Oh boy, oh boy, oh boy.” When the plastic hit the cornea: “OOOOOOWWW! Ow! Ow! Ooooh, oh, oh that hurts. That hurts! That’s hurting my eye. Oh it really hurts.”

Doc: “Can you open your eye so that I can’t take a look?”

Luke: “I can’t. I can’t. I can’t open my eye. Wait. I can open my eye. Oh wow. I can see. Oh my gosh. When I came in here I couldn’t see, and now I can see everything and I’m not wearing glasses. I’m wearing contacts. It’s in my eye. I can see everything. Now I can read all the letters on that chart. I can read even the small letters.”

Me (stifling laughter): “Luke, I’m sorry I’m laughing. I know that hurt. It’s just that you sounded like you were being pierced through the heart with a sword.”

Luke: “Mom it really hurt.”

Doc (stifling laughter): “Okay let’s put the contact in the other eye.”

Luke: “We have to do that again?”

This time Luke began yelling before the doctor even had the contact on his finger. The doc and I were trying not to laugh. I know this may sound cruel, like I am a horrible mother, but Luke was actually doing quite well. I think any mother would have been laughing.

Doc: “Luke, I don’t even have the contact on my finger. I just want to help you open your eyelids really wide. You have strong eyelids, and I can’t keep them open all the way.”

Luke: “Okay. Okay, it’s just that this is going to hurt.”

The doc was great again: “This is all mental Luke. If you think you can do this, it will work. If you think you can’t, it will make it much harder. Just try to relax.”

As the doctor put the contact in Luke’s right eye, Luke let out another bamboo-under-the fingernails wail and continued with his Will Farrell monologue, “Ow that really hurts. That hurts this eye too. But I can see. I can see. This is amazing…” Has he been watching too much Curious George (Man with the Yellow Hat) and Megamind?

So we survived that but had to move on to “Contact Training” with the assistant. That’s when things began to deteriorate. He was trying so hard to get his contacts out, but he just kept closing his eyes or sliding them around on the surface until they irritated his eyelids. He tried several times and then started crying, “I just can’t do it. I can’t. I can’t. I can’t.” I went and calmed him down. The doctor suggested numbing drops. They put those in and we got some more Will Farrell action: “Oh that stings. I need a tissue. Can I get a tissue? Oh, oh, that stings. Oh, my eye is numb. I can’t feel it when I poke it…”

Assistant: “Don’t poke your eye. Don’t rub too hard with the tissue or you’ll get lint in your eye.”

We tried again, but it still didn’t work and Luke ended up in tears again. At this point, I had switched over to survival mode and wasn’t laughing anymore. I was trying to calm him down, and cheer him on. Finally the doctor suggested we give Luke extended-wear contacts that he could wear over the weekend. Then he can go back in on Monday and try again. We hope he’ll be so excited about being able to see, that he’ll be willing to try some more contact training. He liked the extended-wear idea. And was happy as a clam as we left. I called his Dad to share and tell him he had missed out on a classic Luke day.

Unlimited Screen Time

www.xarj.net

Christmas went amazingly well. Maybe because the kids had total screen amnesty. They were allowed to play with the Wii, their new Nintendo DS games, and on the computer for as long as they wanted each day. It was like dying and going to heaven for them, and it was pretty good for me too. Less complaining, fewer tantrums, fewer sibling brawls. And the question of all questions was finally answered. If a tree falls in the forest…no wait, if my children are allowed unlimited screen time, will they ever get bored and quit? And the answer is: absolutely not.

I’ve been curious about this question for quite some time. For one thing, Luke is always whining that he is the only child in the world who has limits on his screen time. “All my other friends can play for as long as they want, blah, blah, blah.” And for another, I’ve had many a mother tell me that if I just let them play as much as they want, they will eventually get bored and do something else. Well, not so for my kiddies. They went from DS to Wii to computer for days on end. The only times they stopped were when we insisted that they go sledding or to a children’s museum or to play a new Christmas game. And in some cases, even that met with resistance! It was a little surreal.

My theory is that kids with ADHD have a greater obsession, even addiction, to video games and related stuff. It is like a stimulant for the frontal cortex, like Diet Coke, yelling, or Vyvanse. Pick your poison. I don’t have any great studies to site for you. This is mainly a family observation.

So we are back to the daily 30-minute quota, despite the ease our amnesty afforded me. It’s really not that difficult to police their time once school and other activities start. And I think they are used to the idea now—after several years of pleading. I’ve promised them they can have amnesty during other holidays, and that has helped to pacify the wild things. And I’ve learned for myself, that there is no amount of video time that will satiate my kids. I will stick with my half-hour rule and hope that they don’t go nutty and play 22 hours a day when they leave home for college. And I also hope that one day soon, I will make it through the day without the Mario Brothers boop boop boop ba boop ba boop song popping into my head.