I've used this word for as long as I can remember. Aspie. Short for Aspergers. Sometimes it seemed less harsh. To me. But recently I learned from an unlikely source that it's not ok. So I asked Reid. "I hate that word. You wouldn't call someone with Down Syndrome a "Downie" would you?" Oh my gosh. I most certainly would not. I never meant any harm & he never said. But I also never asked. I apologized & he accepted right away. It's still bothering me though. How did this never come up?

Apparently not too many people with Aspergers like that term. I feel foolish for ever saying it. Such an honest mistake but it comes with a heavy price. Did he think I was insulting him every time I said it? Do others feel like I threw the term around as a slang word for a serious, already misunderstood syndrome? I guess what matters now is that I know &  I will stop. Also, I owe Reid & anyone else I offended this: 

 I'm sorry for never asking. Sorry for never considering it being offensive. Sorry for throwing the word around without any reservation. Sorry for hurting your feelings. And I will never use it again. Aside from your forgiveness, I ask that if someone you know is using the word to describe you or another person with Aspergers & you don't like it..please tell them. 

Lesson learned. 

Dear Suzanne Wright...

Please don't speak for me. For us. My son isn't missing. He's right here. And he's old enough & smart enough to read your words. And what will he take from them? For people struggling to understand Autism you just unraveled years of hard work. The words you chose & the issues you hand picked to address are not the majority. Autism is a spectrum. It's not a one size fits all shoe you can parade around to get more money. I don't need you to tell my son that he's a burden and one day where will he go if I cannot take care of him.  How dare you. You had so many more words to use & things to say about Autism. Why did you pick the worst?

I'm not claiming Autism is a shiny happy place. But I wouldn't trade it, or my son for your version of normal any day. I've spent my son's whole life trying to get other people to understand him. To understand Autism. It's not some tragic thing. I know families that need help but if you think marching in Washington is the best way to get that help..you're not very smart. The very 1st thing I did when Reid was diagnosed was STOP listening to people like you. "He will never, you will never, he can't..he won't." We should be telling people to not wait for anyone or anything to help their child.

You just used the worst days of our story as a scare tactic  You used our fear in that horrible moment we were told our son had Autism as a platform for your ignorance. You can't use a single bad moment to describe a life. My son is not your Autism puppet to use.  I think the government is exactly where you belong. But not outside. You belong  in there, with them.


If Autism could speak I wonder what it would say to you today?



For those wondering who Suzanne Wright is & what she said:

http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action

http://jerobison.blogspot.com/2013/11/i-resign-my-roles-at-autism-speaks.html

Empathy

em·pa·thy  noun   \ˈem-pə-thē\

: the feeling that you understand and share another person's experiences and emotions : the ability to share someone else's feelings.

My husband recently had a heart attack. I knew as soon as I found out that telling Reid would be hardest. Not because he would be so upset. But because his routine would change. Thank God for my neighbors who are teachers, friends & understand all about Asperger's. They made sure he was picked up from school at the same time, given the right amount of  information & then allowed to go home. Because that's what he does every day. (My other two were fine at their awesome Aunt Stacey's house, being non Aspie they considered it a treat to be picked up by cousins, plans cancelled, dinner changed & routine thrown out. They had a BLAST!!) My wonderful cousin Kayla came to spend the night here because Reid can't sleep anywhere else. He technically could if he HAD to but to be perfectly honest, dealing with him after a routine adjustment is something I avoid. It takes days for him to recover. Kayla even commented he was having so much fun. And he was. I was at the hospital & he missed me, because I'm supposed to be home, but his life was the same.

So here's where trouble sets in. My neuro typical children adjusted when Greg came home. They immediately saw that he was resting, so they were quiet. They did extra chores because they saw it needed to be done. They gave extra hugs because they now know that hospitals save lives. Reid was business as usual. Same expectations. I found myself getting more angry by the minute at his questions, assumptions & lack of empathy. I finally exploded. "Do you not see everyone else doing more? Do you not understand Daddy had a heart attack & we all need to pitch in? Do you not care about anyone?"  I'll save you & mostly myself from the rest. With a blank stare he quietly replied "No. I don't see what you see. I don't get emotions or people. You know I'm not good with that."

After 14 years you would think that I would get it. I hate myself for getting mad at him for the very  reason I write this blog. To help people understand WHY he's this way. Several things clicked into place & I finally got it. I really got it. I can't make him empathetic. Somewhere deep inside my heart I think that sometimes I secretly wait for him to get up one day & scream "Hey guess what, I have empathy!" Like it's some kind of elusive super power you can be gifted. Everyone else sees Reid as we've prayed for & worked so hard to accomplish. And if I'm really honest with you & me..sometimes I see him as what he could be. Or should be. When what he is right now is perfect. He's Asperger. He's everything I write in this blog. More than that but you know what I mean. He is an Aspie. The very minute I had the epiphany that took years too long, I saw that he does do things, in his own way, to show that he cares. How can I have missed this? It's not what a typical person would do. But he's not typical. I stay so busy trying to make sure that he's ready for the world & people are ready for him that I forget who he is. And what he has.

So yet again, we go back to basics. He IS empathetic in his own way. He does feel bad that I was sad & his Dad had a heart attack, but cannot express anything about it. So instead he steps in to boss the little ones around. Because Dad can't right now. And he fixes dinner. And he reminds me of what I need to be doing because that's what Greg would be doing. I saw bossy, messy, meddling. He was filling shoes. I will continue to show him ways he can appear empathetic but I WILL stop expecting him to show it the way I think he should. I was under the delusion that if I said it a million different ways that maybe he would absorb it, like osmosis. Meanwhile, I was being the worst type of hypocrite. Expecting him to exhibit something I wasn't freely giving to him. Empathy.

Expectations are a tricky thing. They are wonderful to have & imagine. But the moment someone or something doesn't live up to yours, how do you handle it? I can say I handle it poorly. Very poorly. Trying to not have them seems impossible. I mean you can't make plans without them. But adjusting once the expectations you have get tangled with the reality of what really is takes patience. If patience was a lake I'd be the rainfall leftovers in a very distant, small puddle. Now that I know my expectations are so off base it's easy to cast them aside. Because Reid surpassed everything I ever expected. Ever imagined or prayed for long ago. And I'm messing it up by being selfish. This does not mean my parenting is done. It means I'm done expecting more when what I have is the son I was told he could never be. The son that I imagined sitting in that tiny room as the Dr. rattled off everything he would never do, never accomplish. The boy that God gave me. The only expectations I need to be worried about are His. So I'm going to focus on those.

Vaccines

I've never hidden my opinion on vaccines & Autism. But lately I've gotten a fresh new wave of questions & friends with new babies. Emails, phone calls & texts that all ask the same question. What would you do? What did you do? What happened with Reid? Do you believe vaccines cause Autism. So..here it is. Here's what I believe. But first, a message to my friends that vaccinate your kids. I think you're doing the right thing for your child. I do not think you're a bad parent because you choose to vaccinate. But sadly, sometimes I feel that you think the opposite of me.

 Sometimes, the only way you can learn something is through experience. I learned to never take your eyes off a kid in a pool..not even for one second. Because my son drowned. I learned to question vaccines because my son reacted to one. I don't call you crazy because you vaccinate. But I can't tell you the looks & emails & comments I get because I don't give my kids every single vaccine that comes out. I'm just asking for the same courtesy. The same respect. There are some on BOTH sides that are crazy. Name calling. Insults hurled back & forth about parenting or lack thereof because you do or don't vaccinate.

Before Reid received his last MMR everything was fine. He hit all of his milestones, earlier than most. Was he a little different as a child? Yes. I would say genetics loaded the gun. And I KNOW  that the MMR vaccine pulled the trigger. To full blown Autism. Hours after the vaccine, he spiked a raging fever, was covered in a horrible rash, vomited & had black & red diarrhea for 2 days. He was also admitted to the hospital with severe stomach pains & was diagnosed lymphadenitis later that week. Over the next few months whatever problems he had before were now off the charts. He slid back into this nightmare of tantrums, vomiting every day all day, stomach pains, cramps & swelling, not eating, not sleeping, not communicating, he lost the ability to ride a bike, which he did months before. He could no longer swim or write a sentence.  He was NOT THE SAME CHILD. Greg & I spent every last dime we had looking for an explanation & received several. But none fit. Then one day I watched Jenny McCarthy on Oprah. I could not breath. She was talking about Autism & every thing fit. Except Reid could talk. I called my childhood friend Aimee, who had been listening to me for years & knew Reid so well. With tears streaming down my face told her I knew that's what it was. I had finally found a solution & it wasn't good. I called the Autism clinic at Texas Children's. For months we waited. I researched, read every book I could find. I stayed up all night every night just scouring for  information about what Autism was. Finally our testing day came. Within minutes I saw that the Dr. knew what I knew. We both remained silent & after 3 days of testing the words came. "Your son has a form of Autism called Aspergers. He will never....blah, blah, blah." My heart broke. For Reid & for myself. "You need to mourn the loss of whatever you thought he was going to be." And I did. But then I got mad. No, I got angry. From my research I knew what to do. So we dug in for 3 years of classes. Classes for us, for him, therapy. For everyone. You name the therapy & we did it. And now he is more than I thought he could ever be. Kick Autism's butt every day!

So..about vaccines. I think they serve a purpose. But the dosage is wrong for babies. It's too many too soon. And the people that are making them & saying you need them are making millions. And they add more to the list every year. Why? I just ask that you research. Instead of saying there's NO way that a vaccine could cause Autism. Read. Research. Think. The amount of vaccines given has increased, Autism has increased. When Reid was diagnosed it was 1 in 88. Now it's 1 in 50. There are so many options. Space the vaccines out. Think about what I stand to gain if I'm right. Nothing. What do I win? My son has Autism. Every day for the rest of his life. What does Big Pharm & the govt stand to lose? Millions. Billions. I don't want to be right. I don't want anyone to go through what we did. I pray each time I see a baby getting their vaccines. And I'm SO beyond happy when I see that they're fine.

Here is some more info:

http://gianelloni.wordpress.com/2013/09/13/why-all-the-measles-outbreaks/

http://www.cdc.gov/vaccines/vac-gen/side-effects.htm

http://www.autismspeaks.org/what-autism/facts-about-autism

http://www.cdc.gov/vaccines/vac-gen/additives.htm

Football

In high school Friday nights were spent watching my brothers. Football was a tradition passed down from Uncles & cousins. One that my brothers were proud to continue. Reid has always been a bigger child. This has prompted many conversations from school coaches, friends & family. "Is he going to play football?" He had the size but lacked the desire to play.  This summer he went to his school football camp. And loved it. I was very happy he chose to play a sport & make that commitment. I was a little worried though. He's never played. Football can be dangerous. And....he's an Aspie.

There, I said it. It did run through my mind. How could it not? I was more concerned about that than an injury. Crazy, I know. Would the coaches understand? Would the players? Would he like after it got difficult? The summer camp was no picnic but it was also no contact. What would happened when he put pads on? And had to hit someone. And they hit him? I never told him these things, of course. I prayed. A lot. Talked to my brothers & hubby. And waited. Turns out, it's been the BEST thing for him.

It's given him a purpose. He's up early for school, he's doing ALL of his homework. Sure, mostly to avoid "do rights" but it's working. He loves it. And he's pretty darn good. I think football in Texas gets negative press sometimes. Are there crazy parents that take it WAY too seriously? Yes, but you have that in every sport. Are there coaches that take it way too seriously? Yes, but again, you can see that anywhere. I'm choosing to see the positive side. And there are SO many great things about football. Here's a few.

1. Exercise- Hours of practice in the Texas sun with pads on.

2. Team work- I'm sure not everyone likes everyone on the team. But that's real life. And you still     have to work together. That's invaluable for a young man that thinks he's the center of the universe.

3. Friends- There are over 100 boys on our freshman teams. They have spent & will spend hours, days & weeks with each other. Getting their butts kicked, winning, losing & getting hurt. They are friends when it counts. Brothers even. They can pick on each other, or call each other names. But you cannot.

4. Accountability-  You can't miss practice. You can't miss school. Sure, if you're REALLY sick, you can. But it's great when your kid is having a morning when they just don't want to go. And not get out of bed. They have coaches, teachers & friends expecting them to show up. Also, there's 20 other kids that can play your position, waiting for you to not show up one day.

5. I know where he is- And who he's with. He's at practice. Or home doing homework. Or eating. Or sleeping. Or at the other games watching the JV or Varsity. With his teammates. And at lunch, he sits with other players. And I know their parents because we sit at the games together.

6. He belongs to something- He found somewhere he fits in. To any kid that's invaluable. To MY kid it's...amazing. Awesome. Just a beautiful thing.

7. He's too tired to get in trouble.- He's 14 & has a little more freedom. I keep an eye on him but I'm not stupid. I was young once & I had brothers. There's ALL kinds of trouble for boys that age. But between practice, games & school he's worn out.

8. Mentors- There are some amazing upperclassman at his school. The same boys that helped with Rowan's room are setting a wonderful example for Reid. We hear so many stories about kids at school getting in trouble. We don't hear enough about young men like this!

9. Coaches- These men are doing something right. They get hundreds of boys to show up to something every day, on time? To practice & play with all their hearts. I'm sure they want to win. But let's be honest, that's a whole lot of work to just say you won a few games. They're investing time in our sons.

10. Sacrifice- Such a great thing for an Aspie, or any young man, to learn. These boys sacrifice their time, their ego's & themselves every day. They also sacrifice their testosterone & leave it on the field.

There are so many more but I won't bore you. Texas football is many things. It's Friday nights with a thousand of your closest friends. It's respect for everyone that is investing in your kids. It's the band. For me it's all of those things & more. Reid is happy to be a part of something. I would be writing about band or art the same way if that's what he chose. But he chose football. And I think it chose him a little too.

Back to school

Back to school is always a transition. When you have an Aspie kid, or any other special needs kiddo I think it's more than that. School is hard for these kids. Between sensory overload, peer issues & anxiety it's usually not a great 1st week for us or them. A new school, new schedule & new teachers add more variables. Variables are kryptonite for these kids. Here are a few tips to help everyone get off to a great start!

PARENTS:

Start your child on their new schedule a week or more out.

Tour their new school. During registration, orientation or call the school & ask for a tour. We've done this & it's a GREAT thing!! It takes away a ton of 1st day anxiety when the kids know where to go the 1st day.

Expect 1st day issues. Wake up in plenty of time to handle the multiple tantrums/meltdowns you know are coming.

Preparing clothes & lunches the night before helps YOU the next morning.

I send a letter/email to the teachers. Usually before if I know who they are. I send a picture of Reid, describe his issues & what they mean/look like. It also includes our  contact info & a little encouragement. We are a team & I like them to know that I expect the best out of Reid & so should they. I always include that having the combination of Tourette's & Asperger creates a unique set of issues. *I especially include his new tic info. A sub once thought he was making a noise for entertainment purposes & he got in trouble.

If a uniform, new shoes or clothes are involved we wear them 2 weeks before school starts off & on throughout the day to get used to them. You Momma's that have kids with sensory issues, this is a life saver!!! Tags, sock lines, new shoes, jeans, shorts & itchy clothes are NOT a thing to introduce the morning of. Ask me how I know that. #1stgrade1stdaynightmares

If your kid is riding the bus call the bus depot. I've always been met with the most caring people willing to help. They need to know your child's issues as well. They'll have your kid at least 20 minutes if not more a day. Sitting at the front or providing a buddy are just some of the things they can do. I haven't talked to a bus driver yet that wasn't happy I included them. *If you can't get a hold of someone before school, passing a note to them the morning of with a small gift is a GREAT idea too!!

TEACHERS:


Before school starts do a little research on Aspergers & other special needs children. Pinterest has a TON of ideas on classrooms tips & tricks. I'm also including some helpful links below.

I'm sure you can see these kids coming the 1st day. They're the ones with the clasped hands, looking like a bomb will explode any minute. Fidgeting uncontrollably. Their tics might include throat clearing, coughing, sniffling, exaggerated arm or head movements. These are all exacerbated when stress is high. And their stress IS high. Introducing yourself & offering a kind smile & a little encouragement will work wonders.

Share the small successes with us & your student. In elementary school Reid had a particularly great day. I can remember his teacher running to the car with tears streaming down her face SO proud. She had every right to be proud. She had gone above & beyond what a teacher should to work with him. I'm grateful to this day for her.

Most Aspies are visual learners. One teacher put Reid's schedule on his desk in pictures. Saved our life. And his sanity.

If you see an Aspie staring off into space, don't assume they're not listening. Most Aspies do not make eye contact or even visual contact with who they're listening to.

Be aware of sensory issues. Reid sat right by a clock one time & couldn't concentrate because the ticking was so loud. The teacher moved the clock. Super easy. On the other end of that spectrum, sometimes Aspies tap a pencil, their foot or drum on a table to get the overload of anxiety out. One teacher allowed Reid to stand up & move freely for a few minutes.

Transitions are rough for these kids. Reid was given 2 minutes at the end of class to prepare for the next class. Quietly. The teacher tapped him on the shoulder lightly, their signal that it was time for him to put his books away, look at his schedule & begin transitioning for the next class.


Here are a few more ideas. We can't be perfect. But these tips & tricks help provide a great base for all of us to begin. The more we know the more we can all be on the same page. The same team. Prayers for a great school year!!



http://www.wrongplanet.net/article412.html

http://www.myaspergerschild.com/2011/09/parents-letter-to-teachers-assisting.html

http://life-with-aspergers.blogspot.com/2011/01/writing-introductory-letter-for-your.html

http://www.suelarkey.com/Tip_Sheets.php

http://www.wikihow.com/Go-Back-to-School-With-Someone-with-Asperger's

Grades

I've learned so much about grades during parenthood. I've been so proud of a 65 you'd think I was crazy. Because that 65 was earned! Through tears at the table & admissions of feeling stupid for not getting it. I've also been so very proud of the all A's that come so easy to one of my children. Lately though I've been worried about grades. It's hard to watch your kid struggle & fail. Especially when you hear the reasons. Which are valid. But school is over & it doesn't matter anymore. Now it's a lesson. To speak up. Ask for help. To communicate.

We're trying to help Reid be his OWN advocate. Not because I will stop. But because ultimately it's his responsibility. I'm not in his class, he is. I'm not in his head, he is. So if he doesn't understand something, he needs to ask. Even if he feels stupid. Even if it looks like everyone else gets it. Even if it means working after school or before. That's a hard lesson for anyone. But you can't get help if you never ask.

I think teachers need to ask certain questions to the kids that are known to have disabilities. Communication works both ways. Is the student just being lazy or did they not understand what you were saying? I get it. Teachers hear a MILLION excuses & they can't chase down every kid, every day. But did you look in their file? Are there accommodations?  Did you apply them? Did you ask the student if they understood? Maybe if you asked a few questions the student would feel comfortable coming to you. And you could BOTH figure it out. Together. Try reading up on the disability your student has. What you think you know about Aspergers & Tourettes can be different than what you actually do know.

I've learned valuable lessons myself too. Reid isn't a typical student. I know that BUT sometimes I need a reminder. Sometimes I'm TOO hard on him. I try so hard to not let him use his Aspergers & Tourettes as an excuse that I forget he actually has a disability. And he DOES need help. Crazy, I know. I want him to adapt but the truth is he is 14.

Here are some great resources to help:

http://www.aspieinfo.com/teacher%20tips.html  (for teachers)

http://www.myaspergerschild.com/2011/05/helping-aspergers-students-transition.html (everyone)

http://www.yourlittleprofessor.com/teen.html (parent)

http://www.theglobeandmail.com/life/health-and-fitness/health/conditions/navigating-high-school-with-aspergers/article572681/     (everyone)