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!)

Big Changes!

My goodness, I've been silent here for a while, but with good reason! Last month, Sam, Kaydee and I packed up all our belongings and moved two hours east to move in with my boyfriend, who teasingly told me that his moniker should be Stud. So, Stud it is!

Stud is a single father of two girls, ages 13 and 10, who live with him/us. I haven't come up with pseudonyms for them yet, but I will soon. He's a stay-at-home dad to boot, so that means I'll still be bringing home the bacon. That works for me, as I have been out of work for the past month and have been going crazy. I'm waiting to hear if I got my dream job, so hopefully I'll be back in the workforce soon.

Big changes and changes in routine are hard for kids with Asperger's Syndrome, but Sam's been doing pretty good. He's really taken to Stud and while he's still figuring out his place with the girls, he's getting better. He's even met another little boy just a couple years older than him who has Asperger's Syndrome too. Sam's never met another Aspie before, and it's really cute watching them interact. 

Here's a good article about setting up family routines for your Aspie. I wrote it a while ago, but I need to revisit it soon so we can begin setting up new structure for our household!

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.

And since this isn't the first time Sam and Kaydee have had to move house, I have this article to share as well.

Moving Tips: How to Pack and Move House with Children

Packing and moving house can be traumatic for young kids. Use these tips to make the transition easier!

Happy Mother's Day!

Most likely everyone is done celebrating by now, but I didn't want to forget to wish everyone a Happy Mother's Day.

What did everyone get? My daughter Kaydee made me a bumblebee out of a miniature tera cotta pot, and my son Sam wrote me a poem. :) I also got a beautiful bouquet of dandelions and other wild "flowers".

I wrote an article on Associated Content about why this Mother's Day is an especially good one for me. The comments on the article have been so wonderful. I can't believe how many people have read it and given me such positive feedback. Check it out!

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.

Unsolicited Parenting Advice

You'd think I'd be used to this by now. Almost every parent who has a child with autism, Asperger's Syndrome, or any number of autism-spectrum disorders deals with this regularly. Some people have this compulsion to give unsolicited parenting advice - and quite frankly, it pisses me off.

Here's what happened today. Someone freaked out because Sam had two doughnuts. I didn't care that he had two doughnuts. He's on a medication that doesn't allow his body to feel "full". Weight gain is a common side effect for Risperdal - Sam has gained 20 pounds since he started taking it in September. I know Sam is overweight. But... it's not like he eats two doughnuts every day. 

This man - who, by the way, doesn't even have children, much less a special needs child - told me that I needed to "curb" this behavior and not let him eat so much or he would grow up to be obese. He was really freaking out that Sam had two doughnuts! It's a really good thing there were other kids around, otherwise I would have told him exactly where he could stick that bit of parenting "advice".

How do you handle the unsolicited parenting advice? Today was a bit extreme - for the most part, the unsolicited parenting advice I've gotten was definitely more gentle. I usually smile and nod and tell them we've tried that already, because chances are we have. We've tried everything!

I ended up just ignoring this man, but if he ever opens his mouth again to tell me how to raise my son, I will say something. Rawr!

What a difference a year makes

Today is Sam's 8th birthday, and I'm embarrassed to say, I've been on the verge of tears all morning. I'm just so proud of him and everything he has accomplished.

It was one year ago this month that we got Sam's diagnosis of Asperger's Syndrome. What a day that was. I had been fighting for almost a year prior to his diagnosis, trying to get information on doctors, trying to get school professionals to give me some direction, trying to convince Sam's father that there was something going on with his son and that it wasn't ADHD (like another doctor had said). 

It was so clear to me that Sam had Asperger's Syndrome. But when I talked to his teachers, his occupational therapist, his behavior specialist, the special education department, his preschool administrator, family members, social services... everyone had a different opinion. It was so incredibly frustrating, trying to figure out what to do and where to go.

Finally, something happened that spurred everyone into action: Sam threatened Kaydee with a knife. Horrible, right? But really, if it hadn't happened, we may still be spinning our wheels. 

Sam didn't really threaten his sister with a knife. I'd mistakenly left a knife out on my desk after opening a package from his father for Sam's birthday, and Kaydee picked it up while I was in the shower the next morning. Sam took it away from her and was trying to explain that it was dangerous. She wasn't listening, so he mimicked "stabbing" motions to show her how dangerous knives are, and Kaydee ran to me crying that Sam had tried to poke her with a knife. Because I hadn't seen what happened, and Sam wasn't telling me anything, I had to go with what Kaydee said happened. 

I called the special education department, spoke with my parent liaison, and she got me an appointment to see a doctor in Bismarck the next day. Finally I had the name of a doctor who specialized in Autism.

When we met with the doctor, I was terrified. I thought Sam was going to be locked up or admitted to a psychiatric facility or taken away from me, because of the knife incident. Instead, I finally got answers. I was finally told, in no uncertain terms, that Sam was autistic.

While some parents may feel disappointed or upset with a diagnosis of Asperger's Syndrome, I was relieved. No, I was more than relieved. I felt vindicated. Ever since Sam was a baby, I'd thought I was a horrible mother. I thought I had done something terribly wrong. Why couldn't I get through to this kid? Why wasn't he listening to me? Why was he acting out all the time and fighting me over stupid things like socks? Why was he so much trouble? 

People whispered about me. No one ever said it to my face, but I'd heard enough to know that the general population thought I was a horrible mother too. Hell, even my ex-husband had his doubts in my capabilities as a mother. 

But no longer. Now I have a name for what ails my son: Asperger's Syndrome. Now I know what I'm dealing with and how I can help Sam with his disability. I dove into research. I ordered every single book I could find about Asperger's Syndrome. I watched him and learned about him and put all my knowledge to good use. I fought for his rights at his IEP meetings. I explained his behaviors. I implemented new tools at home and introduced those tools to his IEP team to help Sam cope. 

And while I've been talking this whole post about how his diagnosis has benefited me, it's really benefited Sam the most. Last year at this time, he had severe sensory issues. He had to wear his socks inside out because the sock "pimples" bothered his toes. I couldn't get him to wear shoes (he wore snow boots). He couldn't stand bright lights, and he cried when his photo was taken with a flash. We couldn't go to a basketball game because of all the noise and chaos. He would cover his ears and yell for everyone to shut up in the lunchroom. 

Today, he has none of those issues. He can wear socks and shoes without problems. He can wear t-shirts with a silkscreen on them. While bright lights still make his eyes water, he doesn't throw the fits he used to. Last month, we went to a basketball game, and Sam just remembered to watch the time clock so he could cover his ears when the buzzer rang. He's learned to manage his sensory problems.

It's not only his sensory deficiencies either. Things are so much more calm at home. I don't fight him when he fills his pockets with rocks - I let him have a rock collection. I don't fight him anymore at the dinner table - if he doesn't like what I make, he knows he can make himself a sandwich. We use the Incredible Five-Point Scale to help him identify where he is emotionally (and it works for me too!). There are so many other accommodations and changes we've made at home, but by now they've become second nature to us, so I can't even identify them all!

I'm just so proud of my boy for all he's accomplished this past year, and I'm proud of myself. I'm proud of Kaydee, who at five doesn't really understand it all, but she sticks up for her brother at school. She's had to endure a lot this past year too, but it hasn't broken her playful spirit. 

Yay for us! 

Happy birthday, Sam! May you experience even more growth in this upcoming year.

Additional reading:

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.

by Heather K. Adams

Public speaking about Asperger's Syndrome

Today I gave my first ever public presentation about Asperger's Syndrome for our local Sons of Norway group. I had a small audience (eight), but it helped me reach my Autism Awareness month's goal to teach three local people about Asperger's Syndrome and autism. 

While I can talk for two weeks straight about Asperger's Syndrome just off the top of my head, I was really quite nervous. I'm just okay at public speaking. I tend to stutter and say "uhm" a lot. But I shouldn't have been nervous. They made me feel at ease as I stood in front of the room with Sam at my side.

I introduced myself and my children, and then started talking about Sam. I talked about how he got diagnosed and the relief I felt when he was diagnosed. I gave a definition of Asperger's Syndrome, compared it to autism (which people tend to be at least a little familiar with), and then launched into an explanation of the various traits and how they affect Sam: language/body language/humor difficulties, the lack of empathy, the sensory deficiencies, meltdowns, etc. I also touched on the good aspects of Asperger's Syndrome: the excellent memory, the high intelligence, the wild imagination.

I spoke about how my parenting techniques have changed after his diagnosis, and I also shared that while people who don't know about Sam's disorder think I'm a bad mother, I know in my heart that I'm not. I'm the best mother I can possibly be for Sam and Kaydee.

I got a lot of compliments afterward, and the audience asked a lot of great questions. They were very interested in the topic and thanked me profusely for coming and speaking for them. Most of them had never even heard of Asperger's Syndrome.

I just feel really good about myself today. 

April is Autism Awareness Month

Last month, at one of Sam's PeeWee wrestling tournaments, his friend's mother overheard me talking about Sam's autism and how hard it was for him to learn the wrestling "moves" in that loud, chaotic environment. She pulled me aside and said, "I didn't know Sam had autism. When did you find that out?" She was surprised to learn that Sam's diagnosis was a year ago.

Since April is Autism Awareness Month, I decided to really look at how I am raising autism and Asperger's Syndrome awareness in my own community. My goal was to teach three people about autism-spectrum disorders and the effect Sam's Asperger's has had on all our lives.

I post all my articles I've written about Asperger's Syndrome on Facebook, and I have had several people (although not local people) thank me for linking my articles. My friend from college said she's learned a lot about Asperger's Syndrome from me ~ and she's a school teacher!

When someone local asks me about Sam, I explain that he has an autism-spectrum disorder called Asperger's Syndrome. Mostly they just smile and nod, and I try to explain things to them, but I haven't been able to come up with a good, yet brief, explanation.

And honestly, not too many people ask me about Sam. They just assume he's a naughty kid.

So how do I raise awareness in my local community? I write for my local newspaper, and I have pitched an idea to my manager for us to interview local families who have children with autism (including mine). So, there's one idea.

There are also a lot of Autism Awareness products - jewelry, t-shirts, buttons, car magnets. I bought a couple t-shirts from Cafe Press, and some pins from another company to wear, to let people know how proud I am of my son with Asperger's Syndrome. 

I am also giving a presentation this Saturday about Asperger's Syndrome for our local Sons of Norway group. I'm so excited! The woman asked me if I could give a 15-minute presentation on such short notice. I laughed and said, "I could talk for two weeks about Asperger's Syndrome right off the top of my head!"

I think I have accomplished my goal, or I will have by the end of the month. What are you doing for Autism Awareness Month? Let me know!

"The puzzle pattern of this ribbon reflects the mystery and complexity of Autism. The different colors and shapes represent the diversity of people and families living with this disorder. The brightness of the ribbon signals hope - hope through research and increasing awareness in people like you."

My Little Literalist

Like most Asperger's kids, Sam is very literal, and it's something I forget about from time to time. While I generally remember to be specific, I forget that what comes out of my mouth and what I mean are sometimes two very different things.

Case in point: Today we were in the car, and I glanced back to see Sam take a swig of root beer. I didn't buy him any root beer today, so what I was wondering is where he got the bottle of root beer. Our conversation went like this:

Me: Sam, what are you drinking?

Sam: Root beer.

Me: From where?

Sam: I don't know where we bought it.

Me: No! I mean, where did you find that bottle of root beer?

Sam: Off the floor in the back seat here, Mom.

If I had just asked him where he found the bottle in the first place, I wouldn't have gotten so frustrated when he didn't read my mind and answer the way I wanted him to answer!

This is the case with so many kids with Asperger's Syndrome. They can't insinuate what you mean when you aren't explicitly clear with your meaning. My daughter probably would have been able to realize that I knew what kind of soda it was and that I just wanted to know where she got it, but Sam couldn't.

Check out this article to learn more about just how literal kids with Asperger's Syndrome are:

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... 

Arthur Explains Asperger's Syndrome

I receive Google Alerts on Asperger's Syndrome and autism, and this morning I found a link to a youtube clip where PBS cartoon "Arthur" explains what Asperger's Syndrome must feel like to someone who has it, and how a friend can adapt his approach when interacting with an Aspie.

While it's very simple, I think it's pretty accurate as well.

The narrator compares having Asperger's Syndrome to living in a world that looks like Earth, only different. I've actually used this very same analogy when trying to give an in-depth explanation of what Asperger's Syndrome is, or how Sam functions. It's a practical explanation, beyond that of "social skills deficiencies".

For a basic overview on the five most common "symptoms" of Asperger's Syndrome, check out my article:

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.

Welcome to 'My Little Expert - Life with an Asperger's Child' blog!

I always hate writing the very first blog post, because I'm never sure how to begin. Do I give a complete history up until this very moment in time? Do I write a cheesy little welcome that encourages everyone to "follow me as I talk about what it's like to parent a kid with Asperger's Syndrome"?

How about I start with just a basic introduction instead? My name is Heather. I'm 31 years old, and I live in a small town in North Dakota. I'm a newspaper journalist and a freelance writer online. I've been divorced for two years (I think!)and I have two children: Sam, who is almost eight, and Kaydee, five.

To protect their identities, their names have been changed. (On a side note, no I did not realize that by changing my son's name to his initials, I would inadvertently "name" my son Sam Adams!)

Sam was diagnosed with Asperger's Syndrome in April 2009. His sister Kaydee is a "neurotypical", which means she doesn't show any signs of autism. Asperger's Syndrome is an autism-spectrum disorder which affects the person's social skills. This is such a basic explanation, but I'll get into more detail in further posts.

So... with all that said, I hope you choose to follow me as I discuss what it's like to parent a child with Asperger's Syndrome! (Sorry, I had to.)