In Limbo

Writing a new blog post has been on my mind lately, but I couldn't figure out how to do it or what to write about. I mean, we're in limbo right now, so what's there to write about? Well, as it turns out, there's a lot.

Being in limbo has forced me to pay closer attention to my children, actually. Because I'm with them practically 24/7, I'm noticing more about their personalities, especially Sam. He's really been struggling lately with his little sister's attitude toward him. He says she doesn't like him because he's "mental". In turn, I've noticed Kaydee does get rather impatient with him.

Here's a little example. Sam and Kaydee were enjoying watching some Annoying Orange videos on Youtube the other night. Kaydee got tired of watching them, so she closed the browser window and left the computer, but Sam still wanted to watch. He was trying to figure out how to get back to where they were, and he ordered Kaydee to help him. Of course, she didn't want to, because he didn't ask nicely, but when I asked Sam to rephrase, she still resisted. 

"Just type in Annoying Orange," she snapped. 

"I did! But the ones we were watching aren't coming up!" Sam shouted back. He was starting to get amped up, so I looked to Kaydee and whispered, "Honey, please."

She stomped over to the computer and yelled at him to let go of the mouse, and in a few clicks, she got him to the right place. 

Because it was late and they were both tired, I let it go. Sam was happy, and Kaydee moved on to playing by herself. However, I couldn't help but notice that all this strife could have been avoided had Kaydee just been more patient with Sam in the first place. 

Is that asking too much from a newly-turned eight year old? Maybe. But it isn't asking too much from me. 

Sometimes I find myself reacting to Sam's whining requests in the exact same way -- with impatience and disgust. Perhaps that's where Kaydee learned it. I'm not saying we should give in to every demand our Aspies make of us, but maybe just taking the time to listen to what he/she needs, even when we're busy, or we'd much rather be doing something else, would make a world of difference in how the rest of the day goes.

I've tried hard to curb that initial gut reaction and (dare I say it?) impulsivity that gets me in trouble with Sam. Gut reactions and impulsivity are what gets Sam into trouble, so why should I expect it to work when I do it? By taking a calming breath and picking my battles, I find the day can run a whole lot more smoothly.

My Asperger's articles

We have a lot of new Aspie parents on our My Little Expert discussion group on Facebook, so I decided to compile all my Asperger's articles into one blog post to make it easier for parents to find them!

Children with Asperger's Syndrome: Symptom Overview
Ever wondered what it's like to have Asperger's Syndrome? Learn the top five most common symptoms for children with an Asperger's Syndrome diagnosis.

Asperger's Syndrome: Early Warning Signs
Since Asperger's Syndrome is considered a social disability, it is easy to recognize in school-age children. However, there are some early warning signs to Asperger's Syndrome that can began in infancy.

Asperger's Syndrome: How to Teach Your Aspie Body Language
A common Asperger's Syndrome trait is a difficulty deciphering body language and tone of voice. My seven-year-old son, Sam, was diagnosed with Asperger's Syndrome, and these are some tips for teaching your Aspie body language.

DSM-V: Asperger's Syndrome to Be Eliminated; Some Aspies Upset
The American Psychiatric Association plans to eliminate the diagnosis of Asperger's Syndrome in the DSM-V. What does this mean for people currently diagnosed with Asperger's Syndrome?

Asperger's Syndrome: Understanding Your Literal Thinker
Do you ever wonder why your brilliant child with Asperger's Syndrome just doesn't understand a word you say? Maybe you aren't speaking his language...

Family Schedules: Setting Up Routines for Your Asperger's Syndrome Child
Children with Asperger's Syndrome thrive on routines and schedules. While it takes some willpower on your part, making a family schedule will help the time your child spends at home be more successful.

On Mother's Day, Celebrating Growth as the Mom of an Asperger's Syndrome Child
Finally I know, without a shred of doubt, that I am the best mother I can possibly be -- all because of my son's diagnosis of Asperger's Syndrome.

Top Six Asperger's Syndrome Books for Parents
Do you have a child recently diagnosed with Asperger's Syndrome, or do you just need additional resources? These six books helped me through the most troubling times with my Aspie son, Sam.


Safety Plan - an Essential Tool when Parenting an Asperger's Syndrome Child
Have you ever been in the middle of an Asperger's Syndrome meltdown? Having a good safety plan in place will make a world of difference for everyone involved.

"The Curious Incident of the Dog in the Night-Time" and Its Portrayal of Asperger's Syndrome
"The Curious Incident of the Dog in the Night-Time" is a national bestselling novel, narrated by Christopher, an autistic savant. Does the author actually understand Asperger's Syndrome or does he make sweeping generalizations about the disorder?

Back to School - My Aspie's Challenge
Heading back to school is a challenge for most students, but for those diagnosed with Asperger's syndrome, it can be especially difficult. Not only would my Aspie have a new teacher, but he was also facing a new school due to our move over the summer.

Asperger's Syndrome: How to Prevent a Meltdown
When you have a child with Asperger's Syndrome, one of the first things you'll need to know is how to prevent or diffuse a meltdown. You can learn to recognize the triggers and the physical cues to an impending tantrum and nip them in the bud.

Risperdal - Prescription Medication Review
Risperdal is an anti-psychotic medication used to treat schizophrenia, bipolar disorder, and symptoms of autism. My son Sam, who has Asperger's Syndrome, was on Risperdal for a year to help calm him and even out his moods.

Intuniv - Prescription Medication Review
Intuniv is a prescription medication used to treat ADHD (attention deficit hyperactivity disorder) in children ages six to 17 years old. My eight-year-old son Sam, who has Asperger's Syndrome, was prescribed Intuniv to help with his poor impulse control.

Asperger’s Syndrome: How to Tell Your Aspie Grandpa Died
How do you tell your child with Asperger's Syndrome that his grandpa died? You start by reading these important tips by an experienced mother of an Aspie.

Update on Sam's med changes

The last post about Sam's medications, I wrote about his behavior after we took him off Risperdal. He wasn't doing well - he was overly emotional and getting upset about everything.

Just a couple weeks later, I'm happy to report that Sam is doing just fine without the Risperdal. He's no longer crying over every little thing, and he's much more calm. I have noticed more "mouth noises", and a little more excitability, but overall, he's been so much better.

We've been discussing the mouth noises, and Ray and I tend to disagree a little about them. Ray thinks they're just habit, something to entertain himself; I think it's a tic he can't control. I do see more characteristics of the Tourette's Syndrome now that Sam's off the Risperdal and I think the mouth noises - at least at first - are something he can't control. We do ask him to stop them, and he does for a few minutes, but then he's right back to doing them. It's something he either can't control or he's not aware he's doing them. Either way, it's something we can definitely live with.

Sam's also lost weight since going off Risperdal. He was 110 pounds, and now he's back to 100. He's not eating until he's miserable anymore. He doesn't finish everything on his plate - even if he likes it. This is what we had hoped to accomplish by taking him off Risperdal, and it's working!

Another positive for Sam - he hasn't been hitting or kicking as much anymore. He was really having a hard time with Kiki, Ray's younger daughter. Every day, he was hitting her, tackling her, kicking her, etc. For the past two weeks, he's kept his hands off her. He did have an incident the other day with one of CayCay's friends (CayCay is Ray's older daughter), but overall, he's definitely improved.

I'm very happy with my boy lately!

Teaching Sam to ride bike

Sam used to be awesome on his bike - back when he was four and he still had training wheels. Then one training wheel broke, but he still did great with just the one training wheel. Pretty soon that one snapped off too. We tried a couple times getting him to ride his bike without the training wheel, but he wiped out and flat out refused. He actually told me he wouldn't ever ride bike again until he was 10. I'm not sure what was magical about that number, but it never changed. Always 10.

Today we spent the entire day outside. My boyfriend Ray worked on the four-wheeler while his oldest took a spin on the dirt bike. All the kids got a dirt bike ride from Ray. His youngest daughter and I went for a bicycle ride, and we dug her old bike out to let Kaydee try to ride. I had an idea... it was time for Sam to learn to ride bike.

Ray's oldest got him on the old bike and tried to get him to go, but he wobbled and couldn't keep his balance. He was about to give up, but then I got up there and held onto the bike with him while I ran next to him. He screamed at me not to let go, but I did with a shove and sent him down the road. He couldn't figure out at first how to pedal, but he did get the hang of it, sorta.

Next up was getting him to self-start. He had one helluva time trying to figure out how to push off with his one foot, pedal with the other, and then bring his other foot up to the pedal. We never did master this task, but it takes practice. I could tell he was getting frustrated, so we focused on something else: steering.

He could not get the hang of steering and kept veering off to the left. I tried teaching him to turn the handlebars, but that was too much to think about - pedaling and steering. 

I'm not being sarcastic - that's a typical Asperger's thing. They can only focus on one task at a time. Aspies also have a tendency to be physically clumsy. The trick is to make them get right back on the bike after every crash, and let them be done once they've "successfully" ridden for a bit. Next time Sam won't be as terrified!

I'm very proud of Sam and his attempts today. Tomorrow we'll try again!

Changing Sam's Medications

With the new move comes a new doctor for Sam. Personally I'm happy about him having a new doctor - his old one never listened to me about Sam's medications, and he never talked to Sam either, although he insisted Sam be present at all the appointments. It was ridiculous, and his old doctor refused to give me a referral to a new doctor too, leaving Sam without a doctor for the whole summer while I tried to find a new one.

I finally contacted the pediatric neuropathologist Sam saw last year to see if she had any recommendations. She did and gave us the necessary referral to see the new doc. Sam's appointment was last Friday, and she agreed with my concerns about his medications.

See, Sam was on Risperdal, which is a powerful anti-psychotic medication that is also used as a mood stabilizer for children with ASD. But the side effects are horrible. The drug causes weight gain because the body can't feel that "full" feeling. Sam would eat until he made himself physically sick. I know this because it happened a couple times until I realized what was going on. 

He was only 7 years old when he started taking the med and he ballooned from 80 pounds to 100 pounds in just a few months. He's still at 100 pounds almost a year later, so he hasn't gained anything since then, but he also can't lose any weight either. This has affected him emotionally and socially as well as physically, because kids are picking on him and calling him fat. He's already got strikes against him socially - last thing he needs is to be teased about his appearance. He's such a beautiful boy!

So the new doctor took him off Risperdal and is planning to change up his other meds, possibly putting him on one medication which will replace the three he was taking. But... Sam's not handling things very well since we took him off the Risperdal. 

It's been almost two weeks, and he's already overly emotional about everything. Today the school called to tell me that he was having a bad day. He wasn't physically aggressive to anyone (which had been a real problem lately at home) but he was just emotional - crying, easily frustrated, upset and angry. 

I don't think it's withdrawal from the Risperdal because these were the things I was seeing in him before he went on it last September. So... I placed a call to his doctor, who was out of town today for a conference. Her nurse said she'd be back on Monday and would get in touch with me then. 

I don't like seeing my boy like this, but I don't want him back on Risperdal either. It's hard to know what to do... 

Back to school

Back to school is always a challenging time for children with Asperger's Syndrome. They have new teachers, new routines, and sometimes new classmates. That's a lot of change for an Aspie to deal with! 

Sam did okay his first day of school. I wrote this article as an assignment for Associated Content. Check it out!

Back to School - My Aspie's Challenge

Heading back to school is a challenge for most students, but for those diagnosed with Asperger's syndrome, it can be especially difficult. Not only would my Aspie have a new teacher, but he was also facing a new school due to our move over the summer.

Dealing with Big Changes

Like I said in my last post, Sam doesn't do well with changes in his routine. It's important to discuss issues and teach new family members about Asperger's Syndrome so nothing comes as a surprise to them. 

I've started doing some Asperger's articles to help our blended family blend more cohesively. 

Top Six Asperger's Syndrome Books for Parents

Do you have a child recently diagnosed with Asperger's Syndrome, or do you just need additional resources? These six books helped me through the most troubling times with my Aspie son, Sam.

Safety Plan - an Essential Tool when Parenting an Asperger's Syndrome Child

Have you ever been in the middle of an Asperger's Syndrome meltdown? Having a good safety plan in place will make a world of difference for everyone involved.

I have quite a few articles on Asperger's Syndrome listed on my Associated Content home page too. If you ever have questions for me or have a topic you'd like me to write on, just send me an email. (It's on my profile!)