Compromise

Recently it seems that I've forgotten what it's like to negotiate. Mainly because for a little while normal Aspie tactics were working their magic. Phrases developed by Aspie gurus used to diffuse the most upcoming volatile situations were doing exactly what they were supposed to. Then, they weren't. "This subject is closed" was defeated by "Who says it's closed? Why does it need to be closed?" "Let's agree to disagree" was sucker punched in the face by "I don't want to agree to that. I disagree & that would be a lie." Basically, my son is older, wiser & is not falling for this stuff anymore. So after yet another question on why everyone around him "doesn't get it" we had a talk that ended in tears for both of us. I said "I'm going to be blunt. Do you want friends? Is getting your way more important than being nice to your friends or your brothers? Being "right" all the time doesn't mean you're winning anything. What did you win? Son, you beat the dead horse, revive it, then beat it again to the detriment of everyone around you. Including you. People. Can't. Stand. That. I understand that these things are important to YOU but that doesn't mean they're important to us." (Did I mention this coup de gras was over a video game? There is a time for standing up for your beliefs ..& it's not over a world on minecraft.) #trytellingthattoanaspie

Ok, I may have yelled in in exasperation. I may have been fed up & screamed it at him. With tears streaming down his face "It's important to me." Aspie's have this soul crushing issue w/ being "right" & discussing why you're wrong. For. Ever. And. Ever. They are right. Because it's how they feel. And. You. Are. Wrong. Because you don't feel the same way. Because you're thinking is wrong. They cannot see it any other way.  But he HAS TO SEE, has to LEARN, that other people see things differently. Because in the real world your boss, your friends, your teachers will not see everything your way. You could possibly be right..but still someone may see it ANOTHER way. A different way. Not better. Just different. It's so hard for me to sit back & watch him fail at this concept. Because I know what people are thinking when he does this. They think he's a jerk. They think he's selfish. And he's not. All the time. But those are not the 1st words I see when I look at him. I see the young man that prays, the young man that packed me a snack the other day for a trip in case there was nothing gluten free, the boy that does try as hard as he can everyday. And then tries again & again the day after. Never giving up.

Aspergers is tricky. Sometimes it stays back & progress is made. Other times it rears its ugly head in the worst moments possible. And stays. And takes the progress made & crushes it. This is when I get the most mad. I take it personal. Because he has worked hard.  So I researched, read more & we're trying new things. Please don't get me wrong. I LOVE Reid's brain, his quirky thinking & his way of relating to the universe. What I don't like is the aftermath of an Aspie tornado. I do not expect Reid to change, I know that is impossible. But what we've always tried to do is help him "fake it til he makes it" & fit in to social situations by teaching him what Aspergers takes away. Social cues. Because while he knows he's "not normal" he likes his friends & wants to belong. Somewhere. So we're learning compromise. Reid understands this only because BOTH sides give up something. Not just him. So technically you're not losing, or wrong..you've simply compromised.

Below is a great article about Aspergers & is followed by a letter from an older Aspie. I loved the peek into his brain:


http://www.myaspergerschild.com/2010/10/coping-with-adult-aspergers.html

And something funny as well:

http://www.youtube.com/watch?v=SiQtKWkIt5o

We love Sheldon Copper!!!!

Labels

Sometimes labels are used as a mean way to describe something or someone. And once given, that person is forever stuck with a permanent reminder of their mistakes. Cheater. Thief. Addict. And sometimes they're the opposite. Sweet. Loyal. Friendly. And most importantly, sometimes, they save your life. Diabetic. Epileptic. Several years ago when we began this journey with Reid I searched for his label. Confused by all the strange symptoms, nothing fit. I wanted to know the cause. The root of his issues. Because to me, until I found out WHY I wouldn't know HOW to help him. When I dove head first into the Asperger world everything fit. Perfectly. I was not ashamed to put this label on him. To me it was what he had, not what had him. If you take Asperger's away Reid is a million more things. He is not just my son. He is a brother, friend, a young man.

Not wanting him to be ashamed, we started using Asperger's to describe his personality & his idiosyncrasies. I accidentally became a spokesperson for reform at schools & spoke in front of  huge groups & to a state Senator. Not because I wanted to, trust me. I have stage fright to the 9 millionth degree. I did it because I was telling my son not to be ashamed. So I spoke up for him & those like him.  Also, there wasn't any information about it then. I had to order books, read, research & find my way. His way. Our way. So I wore that label like a badge of honor because I wanted him to as well.

Today, with Autism growing at an alarming rate, I believe this is an important label. It lets people know that your child is different. There is no need to be ashamed of your child or their beautiful brain. Some of the most famous people are Asperger's. If anything, they should be proud. So should you. Your son or daughter has a unique way of viewing the world. They see things in a way we cannot. As a group Aspie's are responsible for changing the face of music, science, math & entertainment. (Check this out http://www.disabled-world.com/artman/publish/article_2086.shtml)
It also helps teachers, friends, family & the community relate to your child. Often seen as insensitive, one sided, rude or inflexible it provides an instant explanation for their strange personality. When Reid was younger I carried cards with me that explained Asperger's. It helped me remain calm while receiving unsolicited advice from lovely people that thought my parenting could use some work. (Because don't we all need that when our child is in the middle of an epic tantrum? Like I had no idea that it's odd for a SEVEN yr old to come unglued because the store offered a sale on a specific item & they ran out. And now the store is a liar, I'm a liar & the universe is conspiring against him. And he's demanding to talk to the manager. Over $5.00.)

I understand some people cringe at labels. Hoping to avoid their child or themselves being put into some category, forever pigeonholed. I disagree. From the amount of emails, phone calls & texts I get weekly, Aspie's are no small group. The child already knows they are different. From experience, everyone else does too. This is not something you can hide. So why try?  Early diagnosis is critical. Not only does it start therapy early but it retrains bad habits early. Teaching a 7 yr old to not hit, swear or react inappropriately is way easier than teaching a 12 or 13 yr old. And when they get older, it's not only looked at as a bad choice, it's illegal. That opens a whole other world of issues. By then it's a habit. A learned response to a situation. Also, you get support. From other people that have the EXACT issues that you have. And that is awesome. But mostly, and I can never say this enough..it shows your child that you are not ashamed of them. 

Here are some interesting sites :

http://www.templegrandin.com/

http://www.johnrobison.com/about-john.php

http://www.aspergerssyndromeparent.com/famous-people-with-aspergers.html

http://www.yourlittleprofessor.com/benefits.html

http://www.msnbc.msn.com/id/7030731/ns/business/t/mild-autismhas-selective-advantages/

http://redvinesandredwine.com/?p=50

"He had Asperger's"

I stated hearing that phrase soon after the confirmed body count of the CT school shooting. I pushed it away because it didn't matter at the time. It's just a fact about the shooter. I've heard it 30 times just this morning watching GMA. An already misunderstood cluster of issues associated w/ Autism, Asperger's now is taking on a new tone. Recently dropped from the DSM 5 (Diagnostic Statistical Manual of Mental Disorders) by the American Psychiatric Association's (APA), it's more confusing than ever to know what it is.

My son likes guns. He can look at a gun from 10 feet away & tell you what it is, where it was made, how it was made & anything else you'd like to know. His favorite subject in school is History. Where his vast knowledge of tanks, war, generals & countries helps him earn an A in that class. As avid hunters our family has taught every child in the family how to treat guns. Reid treats all guns with respect. Pointed down at all times, safety on. Asperger's does NOT make him more likely to use a gun to injure anyone. In fact it makes him more likely to talk your ear off for an hour about why a certain spring could cause an issue with...blah, blah, blah. Asperger's creates a narrow field of interest for Aspie's. It was golf when he was younger. and to a certain point, still is. But history is where his heart lies. Guns are a huge part of history. I've tried to steer him away from it. Mostly because of tragic things like Columbine & now CT. But why should I? Reid's dream is to work for the FBI & put away anyone that would use a gun to harm someone else. Typical of Aspie's he thinks he should start now, learn everything. And so he has. His concrete mind sees laws as black & white. He reminds me all the time"The speed limit is 65, not 67. You're going to get a ticket. You're breaking the law."

Now to address the violence issue. Reid is a big child. He might look intimidating if you don't know him. But when you do, you would know his odd gait & weak upper body make it easy to push him down. When wrestling his friends do this over & over again while he laughs. 2 years ago while riding the bus home 4 boys started picking on Reid. Literally unable to fight back, A- because he cannot fight; B- because fighting is against the rules,  he sat there while he was punched, hit in the face & even spit on. Violent? The very next day he instantly forgave all the boys & has even forgotten about it. I haven't.

Asperger's does not equal violent. It is not a mental disorder, it's actually a neurobiological disorder. There is no fix for it. No medication. There are classes & therapy. Certain meds can help w/ common issues, like anxiety. But there is no cure for Asperger's. I've seen a lot of bantering about Asperger's in the last 3 days. More than ever. I pray that people educate themselves. I pray that my son doesn't hear "Psycho, mental illness, crazy" & think that you are talking about him. I pray that you talk to your children about it & teach them that Asperger's is not bad. He's already seen a few things & came to me confused. "Do people think I could do that? Just because I have Asperger's?" The same boy that sat by his younger brother's bed this summer, not leaving, crying, praying. Begging God to let him take Rowan's place. "I hope not.' was all I could say.

Here are a few places to look for quick explanations about Asperger's:

http://www.aspergersyndrome.org/
http://www.autismspeaks.org/what-autism/asperger-syndrome
http://www.aspennj.org/aspergers-syndrome.asp
http://kidshealth.org/parent/medical/brain/asperger.html

Siblings of Aspie's

Being the sibling of an Aspie is a tough road. They are put on the back burner often while we deal w/ tantrums, fixations, getting in the car etc. I will never forget the day Reagan made a small statement that knocked the air out of me. I almost cried on the spot. We were dealing w/ another Aspie crisis & I asked if he minded going to another place to eat because Reid can't stand the smell of this place. Reagan had been looking forward to his choice. He raised his beautiful face & said "It's OK Mommy, I knew it wasn't going to happen anyway. I can go another time." He already knew he wasn't going & was used to it. OOPS! Huge parental fail. And he was only 4. I looked at Reid & said "We're going where Reagan wants, it's his turn."

Later I was forced to confront my issues. Reagan did give in a lot because he is so easy going. But I was WRONG to allow it so often. Just because he will doesn't mean he should be the family pushover. From then on no matter what, everyone got their turn. It wasn't easy or fun. Some Aspie's, like Reid, have a sensory issues. Just the smell of a certain place could send Reid into a downward spiral.( I know some of you are thinking why didn't we NOT go anywhere? All I can say is we tried that too..& I don't recommend it.) Siblings get the brunt of their brother or sisters bad behavior, bad moods, tantrums, fixations in one way or the other. They have to listen to it in the car, at home, dinner. If you're not getting any quiet time or peace..guess who else isn't?

So, here is a list of things to help.

Allow the sibling to spend time w/ other family members. They need spoiling & quiet!!

Have a date w/ just that sibling. They get their choice..bonus..you both get a nice, relaxing dinner or lunch.

Teach them the same phrases you use to combat misbehavior from the Aspie. For example "That wasn't nice. A better way to say that is ___." "That topic is closed." "You can be mad but not mean." etc

Make sure they know their sibling has an issue. I can't tell you how many times I've seen families not explain Asperger's to the siblings. This is a must. They need to know there's a reason for this strange behavior.

Foster the relationship between the siblings. Make them a team. One day they will only have each other. There are tons of activities that will help in this area.

Make sure the Aspie sibling isn't the one always giving in. Whether it's a game, a colored cup or movie choices. The need to be validated.

It's HARD to be an Aspie sibling. Schedule family therapy for them if  needed. If you're stressed & the Aspie is also..guess who else may be?

When they deal w/ the sibling appropriately..reward them. It doesn't need to be big or expensive. Praise is awesome.

Family & Friends support

 This is a hard post for me for several reasons. As a parent w/ an Asperger child I often felt uncomfortable around family & friends.  At family gatherings  Reid would cry, tantrum, vomit or want to leave. His sensory overload would start & it was all downhill from there. Normal family functions that are SUPPOSED to be fun were NOT. Birthday parties, Christmas, vacations & other holidays are some of the WORST times for Autistic children. I'll never forget Reid's 1st Birthday. I spent weeks preparing. Everything was going fine until the Birthday song. Everyone started singing & he screamed like someone was burning him alive. Literally. I'm convinced we both have some kind of Birthday party PTSD because neither of us to this day really like them.

I know that our entire family loves Reid. There is no doubt. But had we all communicated early on, family functions would have been way easier for Reid..& us. They are now, of course, but could they always have been? Below is a simple list of typical signs an Aspie is overwhelmed & things you can do to help the child & parents.

When overwhelmed an Aspie may do the following:
Scream, cry, tantrum, stimming (spinning, rocking back & forth, or shaking hands) run away or hide, lay on floor & kick, try to leave, bang head on wall or hit the wall. Of course there are others but these are pretty basic.

What you can do:

1. BEFORE the child comes over have a QUIET place already designated. (your bedroom, guest bedroom etc.) Let the parents know you've done this so they have an escape plan in case the child tantrums. Reid's Aunt & Uncle (Thanks Stacey & Scott) allowed him to go in their bedroom & watch  TV or play his video games. This was AWESOME!!
2. If you know their favorite activity (Lego's, video games, puzzles) have it ready to go for them when they arrive & show them. My brothers know Reid likes to pay games so they are usually ready to go when we arrive.
3. If the child starts to tantrum or lose control please REFRAIN from judgment or parenting advice. The parents are already stressed & it's like throwing gas on a fire. Calmly walk away to give privacy. If you can't, try your best to ignore the child's behavior. The parent sees or hears it & is probably already working on it.
4. Ask about food sensitivities. Reid had severe food & sensory issues. If  a specific dish is being served ask the parent if the child can eat it. If not they'll be prepared & bring something else. (For example Reid's Nana always has a burger on hand if we're having seafood.)
5. Restaurants were a nightmare for us. The noise, crowd & smell usually had him pretty upset within 15 minutes. If you can't avoid it ask the parents if there is a place that's the most agreeable. For instance, Reid dislikes seafood. BUT Jolee's was least offensive to him & had TVs he could watch. Win/win.
6. A huge one for us is time. If you say we're eating at noon please do everything in your power to be on time. Most Aspies have a schedule & although a few minutes is not an issue, being hours off throws our whole day out of whack. Again, Reid is older now so that is much better. But when he was younger it was VERY difficult. Often it would start the downward spiral because once you tell an Aspie something GOOD LUCK changing plans.

By far the most important thing you can do is educate yourself & family. It shows you care & are being supportive. I do not believe the red carpet should be laid out for us. But I do know that small things make a huge difference.

What's the point?

There are several reasons why I thought of starting a blog exclusively devoted to Asperger. Of course having an Aspie is important. Also, I get questions almost daily about Asperger's, Reid, this child, that child, what is it, what's normal, etc. The number one reason though, is because we navigated these waters solo several years ago. We started from scratch. Autism was just beginning to become a well known topic & Asperger was it's long lost relative no one knew about. Once I was even accused of making it up to allow my son to act like a "brat". Fast forward years later & it's a common term but many people still have no clue what it is. So my first post is to give the definition. **Keep in mind that living up to it's name as a spectrum disorder, degrees of behavior & issues will vary greatly.**

Asperger's Syndrome:
Dr Hans Asperger, an Austrian pediatrician, originally described Asperger’s Syndrome in 1944. Asperger's syndrome is a developmental disorder that affects a person's ability to socialize and communicate effectively with others. Children with Asperger's syndrome typically exhibit social awkwardness and an all-absorbing interest in specific topics. The disorder can also include motor clumsiness and problems with handwriting and being hypersensitive to specific auditory and tactile experiences.

So that's just a basic definition. It's such a complex syndrome & has many, many layers. Each one peeling back to reveal awesome, incredibly smart, authentic people that want & deserve understanding. If you're ever lucky enough to have an Aspie in your life, you're definitely in for some surprises. But the rewards & glimpses of genius you'll see far outweigh the hardships. They really are a group of fascinating individuals.