The spectrum of autism ties

Since my “induction” into being a mom of an autistic child, I have studied hard to find the ties that connect autism to us. I’ve researched all ends of the spectrum, from biological, medical, environmental, neurological, and sociological ties. In these 7 years since I have been baptised by fire, I will admit that I am in no way a global expert on autism. I can, however, look at autism globally and see the ties that many people try to make with their theories.

From what I’ve witnessed in our autism community, some actions, attitudes, and axioms are very polarizing. We have a very turbulent community, almost heartbreaking in its non-support of each other as we all cling ferociously to our hypotheses of the cause of autism. We even have a dichotomy within our community of people who want a cure for autism, and those who support “neurodiversity” and are happy with being autistic, claiming it is their essence so why destroy it. I have attested on various occasions of intense debate among all levels of the spectrum, the “cure-bies” (the ones that a cure), the “bio-meds” (the ones who believe that autism is caused by vaccines), the “neurodiverse” (autism is a neurological part of their brain, please accept it for what it is), and those of us who see all sides and just want all of us on the spectrum to support each other.

How can the “outside world” take anything that we say for fact if we are all shouting different messages with varying degrees of intensity, often drowning and cancelling each other out?

In my experience, you need to look at all sides of this issue. It is such a monstrosity that if one doesn’t take time to study each level of the spectrum, he/she would be foolish. I have much family experience with autism from not just my son, but also other family members including myself. (Yes, I have Asperger’s traits as well.)  You could say that not only does autism run in my family, but it gallops. 🙂

So, I take this personal knowledge with me when I engage with my spectrum of autism friends. I try to take a loose end and make a tie with it so that hopefully after I’m finished with all my interactions, I can see a web of support, love, and understanding within my wonderful spectrum.

Milestones and musings

We’ve had a couple of huge milestones here at the Den. First, Casey learned how to ride a two-wheeler bike! After much practice, telling him that we can’t put the training wheels back on because he’d only bend them out of shape again, he has started to master bike riding! I can’t tell you how much of a thrill it is to see him finally bike riding independently. For a while there, I thought we were going to have to shell out beaucoup money for one of those three wheeler bikes.

Another huge milestone is that Casey *finally* pet a dog without getting scared. This. is. huge. In the past, he would run away from dogs, either screaming or crying. This time when he saw this little fluffy puppy, he said “I’m not scared of dogs any more, Momma.” He then went up to the owner, asked if he could pet the dog, and asked, “Which way do you pet him, Momma?” It was so wonderful. I hope this fear doesn’t regress. Oftentimes, kids with autism will progress, then regress. I hope he continues on this path of progress.

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A while ago I reported that I was put on Abilify to stabilize my ever-changing moods. One of the horrid side effects with that medication was feeling that you are in a perpetual state of sleepiness. You can literally feel the sleep in your head, at the base of your forehead. Please note this is one patient’s experience. Your mileage may vary. 😉 I went to my nurse practitioner psychiatrist, and complained about the side effects. I am now on Lamictal, which is another mood-stabilizing medication, mostly used for bipolar patients. Thankfully, I was already off the Abilify for a week since I ran out (the weaning off process wasn’t too bad, except for a few wacky dreams). The titration process for Lamictal was brutal. The first two weeks I was on the 25mg dosage, and I was so irritable. Take cranky and multiply that times 1,000. That was me. When I was graduated up to 50mg for the next two weeks, the irritability finally dissipated. I started feeling level, a lot more balanced.

Now I’m up to 100mg of Lamictal, and I’m starting to feel that sleepiness again, but at least this time it’s not a constant fog that invades my head. It waxes and wanes during the day. I can almost set a clock to it and know exactly when it’s going to happen.

My impression of Lamictal versus Abilify thus far is that I like Lamictal much more. One caveat, however. You need to take it at the exact same time every day. Do. not. miss. a. dose. Trust me on this one.

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I’ve been wanting to go on a political rant for the past few days. What the hell is happening to our country? First, let me disclose that I am a conservative. I will not apologize for my beliefs. I strongly believe in the Constitution, the 2nd Amendment, and One Nation Under God.

This Cap and Trade bill, aka “Cap and Tax” is a tragedy. What’s the deal with the 3:00am extra pages to the bill? Doesn’t anyone in Congress read what is given to them? Then, I read an article that explains how some countries want to amend the Kyoto Protocol, which caps rich countries’ carbon emissions while developing countries are not capped, to “focus on rich people everywhere”. Now, I am by no means a wealthy person. But, if someone wants to drive an SUV, live in a large house, and fly their private jet to their vacation, let them do it. We should not live in a Nanny State.

And what’s the deal with Michelle Obama being elevated to some fashion icon worthy of celebrity status? I’m quite pissed that she is using tax dollars to purchase a $6,000 handbag, then she has the nerve to wear $500 tennis shoes to a food bank? I’m sorry y’all, but this boils my blood. They can talk about ‘distributing the wealth’ and looking out for each other (cue the Kum Bay Ya guitar strumming), but the Obama’s think nothing of jetting off to New York for a glitzy date, a Paris shopping spree, and rubbing it all in the faces of Americans, while so many Americans are struggling to make ends meet.

Ugh. End rant. I could go on, but I don’t want to raise my blood pressure more.

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Here’s a tune to sum up how I feel about our current economic mess.

Shutting Detroit Down- John Rich

Are you aware of 1 in 150?

On the eve of April, I’m excited about “our people’s” month. I’m hoping to keep this blog hopping with National Blog Posting Month AND Autism Awareness Month.

As of recent, 1 in 150 children are diagnosed with autism. My son is one of those 150. I’m very proud of him.

He has overcome many obstacles since he has been diagnosed with the big “A”. He’s learned how to make friends, and he’s trying to develop a wicked sense of humor because he wants to be in the school talent show. he still has a long way to go, but from where he was when he was 18 months old and reading the logos from the Wired magazine, to now where he’s getting subtle humor from the “Diary of a Wimpy Kid” books, we’re incredibly blessed to have him as one of our sons.

However, I will not let his autism totally define who he is, nor define who we are as a family. The autism is just a PART of who he is, and he needs to know what his strengths are in order to overcome his weaknesses.

I am also seeing this in myself, where I have reached the point where I do not want to be defined by my depression. I need to learn what my strengths are in order to overcome my weaknesses.

So, buckle up for a wonderful month of Autism Awareness. I have a very dear friend who is launching her website tomorrow= http://modelmekids.com/autismsitewarming.html  Please participate if you can. You’ll learn much, and make some awesome friends at the same time.

Watch out for mauling Momma Bears

Yesterday was a day from hell. My son, Casey, had a sub teacher in his class. Usually, he does well with subs. In fact, he usually gets along well with everyone. But yesterday when I picked the boys up from school and Kerry comes running at me at full tilt, telling me breathless, “Casey is crying”, my brain immediately kicks into “Protect Bear Cubs” mode.

You see, my son Casey has Asperger’s Syndrome, which some believe is a higher form of autism. Others believe is a form of autism all on its own. I’m not going to get into a debate on what kind of autism Asperger’s is here. What I want you, the reader, to know is that Asperger’s makes socializing and expressing emotions very difficult when one is overloaded. And, when the Momma Bear also has Asperger’s traits, it makes for interesting interactions.

To give you a little bit of background information, my childhood was filled with being a bully target, crying on my part, and loneliness. I was put into special education back when special education was just starting out in the ’70’s (yes, I am that old) because my kindergarten teacher and I just didn’t get along. I could already read when I was three years old, already knew my colors, shapes, etc. I was labelled emotionally impaired and put into special education from kindergarten up to 7th grade.  My mother did nothing to defend me. Nothing. I can remember her constantly telling me “stop crying”, and “get over it”, things along those lines. I don’t ever remember her going to one of my IEP meetings or defending me against the bullies.

When I became a mom, I swore that I would not be like my mother. I would be better. I wouldn’t just leave my kid off to his/her own resources to have him/her raise himself/herself. So, I guess in a way I am overcompensating. But, that’s the background into why I did what I did.

I spoke with the sub teacher, asking her what happened. She was perplexed and did not really know, stating that it was “a bunch of little things” that led up to Casey’s meltdown. I asked her “Did you know that he is autistic?” She said “No”, then I snapped back, “Well, now you know.” Casey was totally inconsolable, just sobbing and barely able to catch his breath. I was to the point of my own meltdown, and when she walked away from us, I let it rip.

“YOU. SUB. COME BACK HERE.” Right there in front of the school; right there in front of everyone, including the school board president’s wife (oh yes, I heard about it at the school board meeting last night. More about that later.)

She said “My name is Karen”, and I said, “We’re going to talk right now. Come with me.” I was met with rolling eyes, and I snapped at her, “You don’t roll your eyes at me. Come now.” I stomped into the office with my kids in tow, her trailing behind me, and I asked, “Where’s Mr. S? We need to see him now.”

We all got into the time-out room, and I was so upset. She started in with her “I really didn’t know what was going on. I thought he was just an oversensitive boy.” Casey was crying, saying, “I made everyone late. It’s all my fault. I was doing everything wrong.”

I was still seething, but could tell that she really didn’t have a clue how to work with autistic children. I apologized for my outbreak to her and the principal, but told her, “I don’t like coming to school and having my child crying. I want to know what is going on and I want it fixed.” We had the boys step out of the room at that point and we talked some more about what happened, again the “it was a bunch of little things that piled up throughout the day” comment. During the whole time, I could hear Casey’s wails in the hall. I pointed out to both her and Mr. S. that “Asperger’s kids want to follow the rules and please the teacher. When they feel like they are disappointing the teacher, they take it to heart and get very upset.”

So we called the boys back in, and she apologized to Casey for upsetting him. Casey started crying again, saying “You don’t need to apologize”. We finally determined that when she is going to make a comment about behavior, she is not going to make a blanket statement, but will address specific kids BY NAME. That way, Casey won’t feel like he’s to blame.

We finally left, went to the grocery store (where more battles ensued over who got to drive the grocery cart), then off to Poppa’s (their dad’s) work. I had a school board meeting that night. I’m the PTO president, and I’m the school Parent Advisory Committee representative (the PAC is a group that advises the Intermediate School District on special education issues. We’re like the liaisons between the ISD and our local school districts.) Plus, I’m on the school board education committee and the library committee. So, I need to be present at the school board meetings to give my reports for PTO and PAC.

I saw the school board president first. Remember earlier that I saw his wife during my meltdown/ mauling session? She is a substitute teacher at the school, too. According to her and her son, my son “cries all the time at school.” Well, gee, doesn’t that make me feel so much better now. I’m having flashbacks to when I was a kid. Luckily, the school board president wants to learn more about Asperger’s so we can help Casey out more. I mention that our school is receiving more autistic students, so we as a whole need to be better educated about autism, and he agreed.

So, my day yesterday was just down right stressful. This morning proved to be just as stressful again. Casey woke up with a huge attitude, back-talking, arguing every single little detail, and just plain being mean. I told him, “we’re going to have a better day today.” I actually had to send him to his room for his back-talk and disrespect.

I’m praying that his day at school today is going to be better, because I don’t want to be picking up another crying boy at the end of the day. I’ll be crying right alongside him if that happens.

Fellow moms of autistic/ Asperger’s children- what do you do? How do you deal with meltdowns?

Come Walk With Us!

This is a once-in-a-lifetime family pic you’ll see here at the BTM blog (well, maybe you’ll see more, but I’m protective about my family like that.) This was taken at the Walk With Me on July 30, 2008.

Casey is on the left in his green Ambassador shirt since he was one of the Honorary Ambassadors this year. Kerry didn’t want to wear one of the Easter Seals Walk With Me shirts, nor the Honorary Ambassador lanyard with his brother’s picture on it. Kerry didn’t want to wear the shirt last year or the year before either…. hmmm…

Thanks to all of you who so graciously donated to our team, Casey’s Crew. We raised over $400-ish for Easter Seals this year.

A huge thanks to all the corporate sponsors, the photographers, John Ball Zoo (who knows what kids LOVE), for helping all the walkers have a fantastic time! And of course, a massive thanks to Easter Seals for helping our family over the past three years.

Photo courtesy WXMI Road Crew: Fox 17- Grand Rapids.