Wheel of Fortune

Eek! I just realized it's been a month since I last posted. Life has been busy in my household. I am not complaining though! I have been able to go out of town on not one, but two fun trips in the month of April. 

One of those trips was to Las Vegas. What a treasure trove of sensory overload that place is!! I thought of Liam several times as I went to the larger than life, four-story M&M's super store, saw the statue of Liberty made entirely of Jelly Belly's, and played the Wheel of Fortune slot machine. It truly is the Disney World for adults. I imagined what it would be like for him to walk in to a casino. I then imagined his head exploding.

JELLY BELLY GET IN MY BELLY!!

I brought home pictures of Vegas for him to see. I even posted a video of me hitting the button on the Wheel of Fortune slot machine. He was riveted! 

"When can I go, Mom?"

My mind traced back to the Pussycat Dolls dancing (if that's what you call it) in the middle of Caesar's Palace.

"Probably not for a REALLY long time, Liam."

You also have to have ALOT of money to make Vegas work for you. And, with my son's OCD capabilities, I will probably need to steer him clear of Vegas for a while.

Even as a well-informed, somewhat level-headed adult, I can see how gambling addictions happen. The "I'll-just-do-this-one-more-time" logic kicks in really fast. You see the breakdown happen when you notice someone two slot machines down from you win $100. You automatically assume that your big break is ONE pull away. You imagine what you will do with your winnings, the places you will go, maybe get that luxury SUV you've always wanted. Who cares? It's free money!! They're just GIVING AWAY MONEY AT THE CASINO.

All of these flowers are real. Pictures do not do the Bellagio justice!

And then you wake up. You realize you've been pressing the same button 20o times and you have like 3 pulls left and $0.75 credit. You IMMEDIATELY cash out. I mean, you know when to stop! 

As my mama said, "Rebecca, the house always wins!"

I did enjoy myself though. I was with a group of fun girls who make me laugh harder than anything. We saw two great Vegas-y shows- Shania Twain and David Copperfield, ate amazing food, and were awestruck at the beauty and architecture of the hotels. (I mean, hello Bellagio!!!)

My favorite slot was by far the Wheel of Fortune machine. That machine ignited all of my pleasure centers in the brain at once because of the sounds that are JUST like the TV show, and the bonus spins they would throw your way at just the perfect time. (most likely when you were just about to cash out)

I have a deep affection for Wheel of Fortune. I grew up as a child of the 80's watching Vanna spin that wheel night after night. I have a dream of going on that show. I even went to a cattle call in Tennessee they held in order to be a contestant on Wheel of Fortune. As fortune (or misfortune) would have it, I did NOT get my name drawn that day. So, I now sit along with everyone else and solve many of the puzzles before the contestants get to them. 

I have passed this love for Wheel of Fortune down to my son with autism. It is the perfect 'Aspy' (that's short for Asperger's) game with a spinning wheel, puzzles, and the same routine every show. Liam does get frustrated when I solve the puzzles before him, but he likes watching it with me all the same. Pat Sajak and Vanna White were at the top of his celebrity list for quite some time. He would wake up and announce when it was their birthdays. To this day, he knows exactly how old Vanna is. (I'm sure she has tried to keep that info off of the internet, but even so, Liam will NEVER forget!!!)

So, when February 18th rolls around...guess who is up at the crack of dawn eager to announce Vanna's birthday!!!!

For some time, Liam would obsessively search for Youtube videos of Wheel of Fortune's past. Such as, do you remember the show from October 1993? Well, Liam does because has seen it 50 times. And, he can tell you the puzzles that were solved on that show. 

This machine was not a winner. :(

He also figured out quickly that if he had his hand on the master rewind/fast forward button that he could fast forward to the end to see what the puzzle was, and then rewind again and "solve" it before the contestants. Liam has no problem using a little trickery if it means in the end he is the winner. Too bad life does not come with fast forward and rewind. We are still working on that little concept. 

And, sometimes I think how could I make this incredible brain of his work to my advantage?? How can I use that seemingly endless memory of his? There's got to be a way! There's got to be a cash cow in there somewhere!!!!

Hmmm...

Maybe that Vegas trip is not too far off after all!! 

Spring Break(down)

Yes, who in their right mind came up with the term Spring Break? Break for who????

Any kind of break from the routine is no such break in the houses of autistic families. It is a week of long days, filling up our little one's time with activities and schedules. By the time the week ends, parents are bleary-eyed and exhausted counting down the seconds until Monday morning school begins. 

Because of this, I decided I would share some of my favorite things in the autism world. This list is by far NOT exhaustive (because I am!), but it is a good start and may give you something to do during this week without STRUCTURE!!!!

1. Adam- This is an incredible story about an adult with Asperger's Syndrome. This is the movie that I tell people to watch when they ask me what autism is like on a day to day basis, and what autism may look like in adulthood. It is a touching story, but also incredible acting! Go see it.












2. Parenthood. I've talked about it before, but it bears repeating...THIS SHOW IS AMAZING! The writing is so great and true to life. Sometimes I will talk to my friends who watch this show like the characters are real- as if they are who I was with last Tuesday night. Then, I have to stop myself and say, "oh yea, they're not real."Adam and Christina are a couple (on the show, Rebecca) with a child on the autism spectrum. His name is Max, and although he can grate on your nerves with his whining and complaining, or the way he calls the shots in his family routine, you cannot help but feel empathy for the whole family. Again, if you are a family with a child on the spectrum, it will give you a good laugh and a good cry. If you are not an autistic family, it will enlighten you to the real life struggles that having a child who demands so much, and gives back so little, has on the people closest to them. They are, I believe, four seasons in, but it is worth sitting in your bed with Netflix and starting from the beginning. You won't regret it!!

3. Jasongood.net

A friend of mine recently sent this to me and I howled with laughter!! Jason is a comedian, husband, and father. I love anyone that can make the ordinary funny and can throw in humor about the woes of parenting. Because as I often say, if you're not laughing, you're probably crying! Jason recently posted this little gem referring to his 3 year old. I have no idea if his son is on the spectrum, but it sounded so much like my little guy that I decided to copy and paste his post. 

46 Reasons My Three Year Old Might Be Freaking Out

Some of these are total guesses. Educated guesses, but guesses nonetheless. Seems like it’s hard being a kid.

His sock is on wrong.

His lip tastes salty.

His shirt has a tag on it.

The car seat is weird.

He’s hungry, but can’t remember the word “hungry.”

Someone touched his knee.

He’s not allowed in the oven.

I picked out the wrong pants.

His brother looked at him.

His brother didn’t look at him.

His hair is heavy.

We don’t understand what he said.

He doesn’t want to get out of the car.

He wants to get out of the car by himself.

The iPad has a password.

His sleeve is touching his thumb.

He doesn’t understand how popsicles are made.

The inside of his nose stinks.

Chicken is gross.

A balloon he got six months ago is missing.

A puzzle piece won’t fit in upside down.

I gave him the wrong blue crayon.

The gummi vitamin is too firm.

Netflix is slow.

He jumped off the sofa and we weren’t watching.

He’s not allowed to touch fire.

Everything is wrong with his coat.

There’s a dog within a 70 mile radius.

A shoe should fit either foot.

I asked him a question.

His brother is talking.

He can’t lift a pumpkin.

He can’t have my keys.

The cat is in his way.

The cat won’t let him touch its eyeball.

The inside of his cheek feels rough.

Things take too long to cook.

He has too much food in his mouth.

He sneezed.

He doesn’t know how to type.

The DustBuster is going to eat him.

His mom is taking a shower.

Someone knocked over his tower.

He got powdered sugar on his pants.

The yogurt won’t stay on his spoon.

EVERYTHING IS TOO HOT.

**********************************************

Another post from Jason talks about his wife's habit of trying not to use expletives in front of her children. If you've ever stepped on an action hero with bare feet, and have almost blown an O-ring from trying to keep from saying a bad word, then this is the link for you: http://jasongood.net/365/2013/01/the-g-rated-phraseology-of-motherhood/

4. Jim Gaffigan So, speaking of comedy, I don't know anyone who does not love the comedy of Jim Gaffigan. I hear he has a new special out on DVD, but the most recent one I have seen is Mr. Universe.  He is a father of 5 kids, and has lots of material with that fact alone. Netflix has it, so no excuses! Go check it out!!

5. Savant "Burgertime" So, my oldest son is WAY in to DJ's, dub step, and electronic dance music. It is an entire other world of pulsating beats, light shows, and headaches. (because after several minutes of listening to it, you will get a headache!) But, every once in a while, he will play me something that I can hang with. I like some of the more pop stuff. And, there is a chap with autism who started making dub step music several years ago. His DJ name is aptly called Savant. My son informed me that last year alone he produced four albums, so he is definitely living up to his name. I wanted to share his song "Burgertime" because I like the fact that he refers to his diagnosis in the song, and I think it's incredibly brave for him, and informative for us.

I will end my list of favorite things, for now. 

I hope this week proves to be a time when you actually CAN listen to a song on Youtube, watch an entire movie, or maybe even an entire season of a TV show.

Sometimes you just gotta just unplug.

Bewitched!

I am waiting with bated breath for the school bus to show up. It's almost that time and I can feel the hairs on the back of my neck stand on end, my shoulders are tightening up, and my jaw is curiously tense. 

All children around the world become bewitched around 5pm.

Chill out, you might say!! What's the worst thing that can happen???

This is the time when the bewitching hour(s) begin. 

We all know what this is. 

Bewitched. When I look up the definition it mentions something about being enchanted and delighted. I'm not sure what Webster was smoking when he came up with that. Because at my house, the bewitching hours are from after school/homework hours to bedtime. And to me, this is really just the in-between time before I get my kids in the bed. Can I get an AMEN!

As you know, I love my children. They both enchant and delight me, at times. But, something about the day getting darker, the dreaded "what will we ever cook for dinner", and the mood-altering homework hour is just about enough to send ole Mama over the edge. I mean, why can't the teachers do his homework with him at school?? I mean, what am i paying for???? Oh...wait...public education.

I do have a bit of a right to be tense. Last week was a doozy. 

Wednesday morning started like it normally does: me shuffling out of bed at the crack of dawn, scowl on my face because the sun was peaking in, and Liam being as loud as he possibly could be. 

He amazes me. I have never seen anyone dash out of bed like he does. He operates in 'off' and 'on' mode. No slow fade in. And this morning was no exception.

But something has been happening lately. He has grown a bit surly the past few months. I can only describe it as edgy and disgruntled. I know! You're thinking, uh, what else is new? He has autism. No, this is different. He has taken his complaining and whining to an entirely new level of awesome-ness. I think it is something called hormones. They are beginning to surge through his veins with the force of a tidal wave.

So, there he was, yelling at the "stupid cereal box" because the cereal clearly poured itself way too much in the bowl. (How dare that cereal! Maybe it IS stupid!!!)

And, let's just say I was not on my game this morning. I was grumpy and tired and was in no mood to hear all this clatter over nothing this early in the a.m.

So, I began yelling, complaining and whining (because that's productive!). After this tactic did not exactly get us anywhere, I sent him to time out. I was thinking what a genius I was because I thought I had won this little skirmish. 

Nope. He just began hurling the whining and complaining from the chair. 

I quickly walked over to him with wagging finger saying something about being the one in charge when he decided to throw his entire FULL bowl of cereal and milk at my face. 

It was exactly like the movies. Slow-mo, with a huge thud against my jawbone and streaming milk and shredded wheat all over myself, the furniture, the floor, the walls, the chairs, the rug-everything EXCEPT Liam!

I wish our spill site was THIS clean!!

The look on his face was horror mixed with, "oh my God, what is she going to do to me!!!"

This is one of those moments when the parenting book goes out the window. The response that you want to have and the response that you need to have are two very different things. And the chasm between the two is long and wide!

I will let your imagination fill in the blanks on what I wanted to do...

But, I knew that I was going to have to de-escalate the situation, and fast! I was the adult. Not him. 

I threw my disgusting cereal-soaked clothes to the floor and showered off my hair as best as I could. I took a few deep, VERY cleansing breaths and headed in to face my opponent. I very calmly told him that he would have no more free time today and he would spend the rest of the morning cleaning up the mess he made and writing sentences until the bus came. 

Some of you may be thinking that the punishment was not enough. But, I have learned that I have to parent Liam a lot differently than my other child. Consequences have to be immediate, and the worst thing in the world to him these days is to not have free time. 

Anytime he tried to blame me for his throwing the bowl of cereal, I quickly interrupted him, and told him he was not allowed to speak unless it was directly related to cleaning up the mess he made. He mopped, and wiped, and swept. It took forever and I had to sit there and manage every second of the clean up. 

I tried not to let him see my tears, but when he did, he asked me why I was crying. I didn't know whether to maniacally laugh in his face or weep uncontrollably. I just simply said, "You know why."

The bus arrived and he set the mop and dish rags aside, gathered his books, and walked out the door like it was a normal day. 

"Bye, mom!"

I was incredulous. Even after all this time, I still can't believe he doesn't get it. I want him to SEE ME! I want him to see what he does TO ME. But, he doesn't. It doesn't register. 

I sat down and wrote an email to his team at school just to let them know the happenings of the morning. I asked his 5th grade teacher, who happens to be a male and an ex-cop, if he wouldn't mind giving Liam a little man-to-man talk about violence towards women- especially the mothering kind. He graciously agreed.

(Now this is the part of the story that reminds me to tell you parents of autism that you need a team around you.)

A few hours later I received an email back from his special ed teacher saying that he seemed upset this morning when he arrived at school. She sat him down and he told her he was "very sad." Knowing what had happened, she probed a bit further and asked if he wanted to talk about the incident. He did, and said that his male teacher, Mr. Carnes' said that "men who hit women go to jail", and that their sentence would be, "two days."

I smiled when I read that. Of course! Now, THAT was the thing that stuck out in his mind. But, I didn't care. Whatever it took was fine by me.

Mr. Carnes wrote me an email stating that they had a good talk, and that I should look for a letter from Liam when he got home. 

Once home, Liam proudly waved the white envelope and announced that he had a letter for me. 

"I'm sorry, Mama."

"Thank you, Liam. What does the note say?"

"MOM, just read it, OKAYYYY." 

**sigh**

"Dear Mom I am sorry that I threw a bowl of cereal at you and I really love you so much. Because you are my mother. The things I was sorry about was hurting you, yelling at you and being mean to you. I love you and I will never do that again. The things that you do is making me my dinner, you love on me and you snuggle with me. And you buy me surprises, you ride bikes with me. Love, Liam"

**smile**

I'm glad he stuck the part in there about buying him surprises. He's already a using a little Freudian technique. 

The Letter.

I am so grateful for a team of people that rallied around us and walked Liam through something that didn't even happen at school. They jumped in, feet first, and took the opportunity to show him what it means to be empathetic and caring.

And, I am grateful for the corner of Liam's heart that this letter was written from. I know he cares. He has to. He just doesn't always know how to show it. But, I have the proof. It's written on a white 8x11 sheet of paper. 

Even if it was scripted a little bit, those are his words. And, I'll keep riding bikes, I'll keep loving and snuggling, and making his dinners, as long as he lets me. After all, it's these little moments that make it all worth it. 


Well, sort of....

God is at Cracker Barrel

Many times I will head down to this awesome coffee shop down the road to work on my blog. Today was no different and I was horrified to discover an accordion player noodling away not as just a starving musician on the sidewalk, but as hired ENTERTAINMENT! 

Just say NO!

Ugh. I will push through as I cannot go home during homework hour. I must stay here and endure the bad notes. Because if I go home while Liam's tutor is working with him, there are too many cooks in the kitchen. I will try to give him directions at the same time as the tutor and that just doesn't work so well. He is confused as to who he will talk back too! 

Speaking of talking back, has your child ever had a seizure? (I couldn't think of a segue)

Well, mine has. And, it was incredibly scary. 

I was not there, mind you. It happened at school one day. And, I got that call, that scary, scary call. 

The nurse had called to say that he was acting really strange and placed his head in his aid's lap. He began slurring his words and seemed confused. The nurse looked him over and immediately called me. She also mentioned that his balance was off when he was trying to walk down the hall.

I began to cry. I didn't know what was happening to my precious little boy. He was in first grade. We had been through so much-  now this??

We all decided it would be best to take him home for the rest of the day and let him lay low. I called Liam's neurologist and we scheduled an appointment the following week for an EEG. 

The nurse called me the day before the appointment to give me the guidelines for the EEG. One little tidbit would be for him to stay up most of the night before his brain scan. She just "threw in" that he could only get about 3-4 hours of sleep. 

Cool! I couldn't wait to attempt to keep an autistic 7 year old up basically all night.

I was also so nervous about how he would handle the actual procedure. How would he do with nodes all over his head? How would he act on no sleep? 

God will provide in mysterious ways, I have found. I run around with a creative, musician crowd that loves to stay up all night. I had a group of guy friends that would take this challenge on with absolute enthusiasm. We decided we would take Liam and his brother bowling at the midnight bowling center. 

Midnight bowling is the BEST for keeping little boys busy!

Liam thought this was the greatest moment ever! These three guys met us at the bowling alley at 10:30 at night. We grabbed a bucket of beers, a few hot dogs, and made sure Liam and Walker were the stars of the show!

We left the bowling alley about 12:45am, and my goal was to keep Liam up until about 1am. This was no easy task. We decided to stay at a friend's house that was closer to the hospital in case Liam tried to fall asleep on the way in. (Did I mention this was not allowed?!)

We settled in until about 1:15am and crashed. I set my alarm for 5am, but our appointment was not until 8:30am. This was going to be the longest 3 1/2 hours of my life. I was alone with two boys- one of whom got to sleep in and one who was so confused and angry as to why I was getting him up at this ungodly hour. (I still think this when the bus for my high schooler comes at 6:50am. WHY, DEAR GOD, WHY??)

I pushed him into the shower with him crying, saying he didn't want to be here, I hate you mother, why are you my mother, etc, etc. So, I told him I would take him to get the BEST breakfast EVER! Still not winning points with him. He was groggy and tired, and so was I.

So, we went to the place where everyone comes alive and dreams really do come true- Cracker Barrel. 

We all know that this is really just a glorified truck stop.

But, something about that familiar smell of grease and pancakes, a hot fire in the middle of June, and "Country with a 'K'" homestyle goodness that makes me feel right at home. I am from 'Bama, after all! 

Kountry Goodness

The drive to Cracker Barrel was a comedy show in itself as I was trying to maniacally keep Liam awake- listening to loud music, singing at the top of my lungs. He just stared at me with utter contempt. Normally, this would have been an all out fist fight with me on the receiving end, but the fight had left this little one's body about three hours before, so I had that at my advantage.

We sat down to eat when he began to freak out in his chair. I tried to explain to him what was going to happen, the schedule, all of my usual tactics, but he was pissed. He was angry that I had dragged him from his comfy sleep to a room full of lights and country music. I began to cry as well. I felt alone and heartbroken as I did not know how to make him understand how necessary it was to keep him awake. I didn't even really know how to explain it to myself since I'm not a neurologist. (could've fooled you, huh?)

After a stack of pancakes, bacon and eggs, an IV of coffee, and our hands on every piece of knick knack that Cracker Barrel had to offer, we left CB with still an hour and a half before our appointment. We went back to my friend's house and woke up Walker. He was not about to sleep through any more of our nightmare-he would be made to join in the fun! 

So, we packed our bags and headed for the hospital. It's always interesting looking around at all the sick people in the waiting area. You're thinking, "What are these people in here for?" Some are more obvious if there's a disgusting hacking cough or tubes coming out everywhere, but then some are not. I was hoping that we were blending in, but Liam was insistent upon "stimming" on the wheels of the wheelchairs going by. He would look intently at them, like his life depended on it. I really didn't care at that point.

Our name was finally called after what seemed an eternity. Liam was thrilled to learn that this jaunt earned him a ride in the wheelchair up to the 5th floor. He could not contain himself!

We were greeted by the neurology department who gave us the run-down of the morning. Liam was placed in a bed and he sat patiently while the nurse placed nodes all over his head. I teared up looking at him. To see your son lying vulnerably with tubes connected all over him is not easy. But, he had the attitude of a champ!

He had to simulate hyperventilating by blowing on a pinwheel several times, then he had to watch a strobe light, and then...they asked us to fall asleep. The most glorious part! And, he went straight to sleep without any hesitation. And, don't you know we all did!!

When we woke up, we were told we could leave, but would have to visit his neurologist before to get her diagnosis of the problem. She did not see anything terribly unusual in his brain patterns. There was, however, something that 'blipped' while he was sleeping that was congruent with his diagnosis of autism, and was not uncommon, she said, to see in someone like him. She said it was more likely that he needed to stay on the seizure medicine for the rest of his life.

I wasn't sure how to take this. She was confident that the medicine would help him regulate and keep from having seizures, but she could not be totally sure. Part of me was devastated that I was staring down the barrel of a life with medications and possible seizure activity. And, part of me was relieved to know there was help. 

See? It's not so scary! 

As with any part of autism, there is such a range of emotions. Sometimes you compare your lot with others and think, "well, it could be worse." And, then other times you just long for normal. You just want to have the 'normal' problems of having broken arms from tree climbing or stitches from falling down. No, with autism, you have all of that and much more to deal with. And, many times, the future is so hazy that you do not know at all what to expect. 

But, what you can know is that, if you are aware enough, you will see the ways that God does provide in the moment. He provided my friends who were stoked to go bowling at midnight. He provided a breakfast place that was open early to house us and our need to waste a lot of time. He provided doctors and technology to help us get to the bottom of Liam's issues, and medicine to stop the seizures from happening. I forgot to say that while I was sitting in Cracker Barrel, I remember distinctly receiving several texts from friends as they were getting up saying that they were thinking and praying. That was God. He knew what I needed right then and there.

I am happy to report that Liam has (knock on wood) NOT had a seizure since that day. And, he is able to tolerate the generic brand of medicine so his meds are only about $6 per month as opposed to the almost $175 that the name brand was.

And, this experience was one of those that I can look back and see God's presence. He is not in the past and in the future. He is in the right now. And, when I am able to BE here- there is less fear and more trust. In these rare moments, I am able to accept and receive the grace of knowing that all is okay. That I will make it some way, some how. Even in the sadness, because nothing lasts forever.

There will be joy. 

Even if it's in a pancake or a wheelchair ride. God is near nonetheless.

Homework Helper

I thought this day was going to be such a good day! So far, all had gone the way I wanted it to- laundry was up to date, my paper for school was moving along nicely, and I even got to share a cup of coffee with my bestie at her house this particular afternoon.

All illusions of perfection were dashed when I saw the babysitter calling...

Uh-oh. 

There are two phone numbers I do not like to see come up on caller id- babysitters and the school. Nine times out of ten, these calls are not going to be good. 

I love all of my sitters! I have been blessed to have great girls that love Liam and are super understanding of his diagnosis- even when he is less than stellar or moody blues! This particular sitter has been a Godsend. She is one of those that just picks up on things that need to be done around the house. She doesn't use the down time as a time to get caught up on Facebook (because that's what I totally would've done if I was a babysitter nowadays). She texts me to ask me if I want my whites washed or if she can get dinner started. Brings a tear to the ole eye!! 

But, this was not a good call. As soon as I picked up the phone, I could hear her trying to hold back tears. (not a good sign)

"Are you coming home soon?"

"Yes, but I'm still another 20 minutes away! What happened? What did he do?" 

It turns out Liam got violent this day, something that he hadn't done in a while. 

Having a tutor helps me.

My sitter comes a few times per week to do homework with Liam. If she did not do this, someone would be hurt in my house- me or my children. Not sure which. Homework is NOT my strong suit. Which is why the Bota Box wine is nicknamed the "Homework Helper". Sadly, I have to get my high school freshman to work out math problems with my 5th grader because...well, the problems are too hard for me. Needless to say, my sitter is an integral part of my week. WE ALL NOTICE WHEN SHE IS NOT AROUND!

It seems my sitter asked Liam to recite his vocabulary words one too many times and he decided he needed to give her a swift kick to prove his point. I do not make light of this because I have been on the receiving end of this kick and it is painful. And, even more than pain, it is traumatic. 

The trauma of having a child tantrum and assault you is tough. You cannot know this until it happens to you. And, when it does, it catches you off guard, and you feel exposed and vulnerable. 

I have had to restrain him before because he was violently throwing things and was going to hurt himself and/or others. It has gotten so much better over the past few years. If it had not, I don't think I would have the emotional energy to even write this blog. 

Thankfully, my sitter handled it the best way she knew how. I told her to go ahead and leave my 14 year old in charge until I could get there in a few minutes. 

So, what do YOU do in times like these? 

I choose to turn the tv on and check out.... 

***sigh***

No, that's what I wish I could do in these moments. 

These are tough times. You are mortified as a parent that your child is capable of hurting another human being. You are stressed for the sitter and wondering if they know what to do. You are sad because you thought you had dealt with this before- you thought this part was over. Or, at least, that's what you wanted.

Thankfully, I have an older child that can take over, if need be. In this instance, it was best that my sitter get out of the line of fire, assess for safety issues, and get out of dodge! 

But, not every one has an older child capable of stepping in. And, not all autistic families have good help available to them. 

In the past, I have placed ads on the online bulletin boards of colleges to get help for Liam. I am a single parent, so having reliable, competent help is paramount in my life. But, looking for someone who has had experience with autism is really helpful- especially if that person will be a significant part in your child's week. 

There is nothing more traumatic than an autistic outburst!

Having a behavior therapist on call is also helpful. My girl, Hunter, has been my go-to person when I have had to go out of town for any amount of time. I have her phone number plastered on the fridge in case the family member or sitter that is keeping Liam has any issues. Hunter is kind enough to do that. Not everyone would be so generous with their cell phone. But, she is committed to seeing her families through some of the most difficult times in their lives. 

Also, having a 'safety' plan in place is key for those times when things are not going so swift. 

Admittedly, I am not the best at warning my sitters of worst-case scenario. Who wants to tell their fresh-faced college student that they should wear a helmet in case a blunt object could potentially come flying in their face?? I like to do the slow fade approach. Win them over with Liam's precious smile and antics, and then cross my fingers nothing bad happens or sets him off. **sheepishly** "tee hee!"

And, honestly, his behavior has gotten increasingly better with age and maturity. So, many times, I simply forget.

 [But, one could ask themselves if it is my unconscious (Freudian) "forgetting", and really I am just hoping someone stays on to help me with my kid. Not sure. I'll tackle that in my next therapy session.]

Safety plans really could be as simple as locking the child in a room that is child-proof, calling for help, and sitting outside of that room until help arrives. Another idea is putting the rest of the family in the car and locking it while the parent or person in charge goes to deal with the child. 

Getting the child to a safe place and calmed down is really the first order of business. We have worked so tirelessly on getting Liam to self soothe that the strategies are finally paying off. In this instance this week, he put himself in his room (albeit while slamming the door) and got himself out of the hostility. It takes training and a lot of patience and consistency to get these kids there, but it can be done. DON'T GIVE UP!

When I finally got home, I was calm and collected (after turning on rock music extremely loud and banging the drums on my steering wheel for the remaining 15 minute drive) because the last thing you want to do is seem flustered with your child. They smell weakness and they have 'won' when you show signs of being upset. (This is very hard to do- I have TMJ problems from clenching my jaws.) I gave him his sentence- he was going straight to bed (at 6:45pm) and no technology for the next two days. 

I did not get the empathetic apology I was hoping for. It was forced and he was still trying to justify his actions with, "well, she was making me do homework too long." I still made him write the apology note. As an older friend said to me one time, "You teach your kids to say please, thank you, and I am sorry. Eventually, it will catch up with their hearts."

Yesterday, he got off the bus as usual.

"Liam, I made you your favorite snack."

"Thank you, mom!!!"

This thank you came out on his own. I didn't even have to ask for it.

Baby steps.

John Mayer Helps Autism

In the world of autism, we parents have many a battle to fight. Sometimes you don't even know there is a battle and it creeps up on you like a stealth, quiet ninja...

"I had no idea that the color of the curtain at story time at the library would set him off!!"

"I wish I had brought Honey Nut Cheerios for him to snack on instead of plain Cheerios-may I never make THAT mistake again!"

These are the things in life that you didn't see coming. If you're anything like me, sometimes you are really on the ball as far as projecting ahead at the pitfalls and bumps in the road for that day. Other times (okay, let's be honest here, most EVERY DAY), I am just in survival mode and planning ahead feels exhausting.

All you planners out there are shaking your heads...tisk, tisk...if only she was a bit more like me. Trust me, I WISH I was more on it. And, Liam has taught me a thing or two about being on it if I want to stay anywhere for an extended amount of time.

Sometimes, though, there are just those blaring, obvious markers in your day that should indicate what your outcome will be. As I have said before, you can anticipate with some certainty what will be served on Thanksgiving day. In this instance, bring a sack lunch for your little one with autism. You can bet that the doctor's office will have a long wait time, bring the Nintendo DS or there's hell to pay! You know, things like this...easy!

Then, there are those things that you KNOW better. You know in the deepest parts of your gut that it will not turn out okay no matter how much pep talk you give yourself or your little one. The thing that will set off a typical developing child, much less one with autism. You know the one...Fireworks!

In the early stages of Liam's diagnosis, I was determined not to let this autism thing get me down! People go see fireworks on 4th of July, dedgummit!!!!! This is what you do and I will not, so help me, let my son determine whether or not I will see fireworks on the 4th.

I think I thought that he would ultimately enjoy it. Yea, maybe it was loud and maybe it looked like there was fire raining down upon us, but Hey! He'll LEARN to like it. I was stubborn and deep down, I knew it.

We always go to the beaches of the gulf of Mexico during the week of 4th of July. We have a family home right in the middle of the beaches of Rosemary Beach and Seaside in Florida. It is so beautiful down there. If you haven't been, make plans to go. Some of the most breath-taking beaches in the world are located just south of Alabama and Tennessee. Anyway...

This particular year (I'm thinking it was 2004) was not unlike most years. We were down with a big group of extended family and had planned on watching fireworks in Seaside. We set up our lawn chairs, picnic basket, and blankets and settled in for what was sure to be a beautiful night. Liam was next to me and seemed just fine running around with all the other children who were there with their families.

The first batch of fireworks began...BOOM! BOOM! CRACK!

Liam looked at me with the widest eyes and the most horrific expression on his face like, "What in the freak are you trying to pull on me??" He instinctively plugged his ears quickly and again looked at me for reassurance. I was probably smiling maniacally, trying to make the whole thing seem like a normal occasion- which set him off even further.

The screaming began, other families stared as we were frantically trying to figure out our escape route. And, with each passing second, another explosion would happen, loud cheering from the crowd, and even louder screams from Liam.

Most of the businesses had closed for the evening and we were all in one car. Liam's dad, Will, scooped him up and noticed that the small record store located on the square at Seaside still had its lights on.

The guys working in the store saw the tear-stained face and heard the screams and reluctantly let Will in to the back of the store.

"It's gonna be okay, Liam. Those are fireworks. They won't hurt you, I promise." More tears, more screaming...clearly, this was not our Kodak moment we were looking for.

Will thought that maybe some music might calm him down.

"JOHN MAYER NUMBER 8, JOHN MAYER NUMBER 8!!!!!!!!!!!!!"

"Okay, okay, uh...guys, can you put on some John Mayer for my son?"

The song Liam was referring to was a song called "3 x 5" that we had listened to on occasion. And, come to think of it, it is a really soothing song. (hit the link above to hear it-I think you'll agree). For reasons unknown to us, it was the very song that led Liam into a calm trance in the back of that store. They put it on repeat and he laid down in the corner and let John Mayer take him to another place.

Fast forward several years to this same record store. I had long since forgotten this story (because with autism, there is a 'story' about once per week, so life begins to run together). I took Liam in to the record shop to look around. He was yelling out all the band names on the placards and so excited when he recognized one of them.

"Mom, we have THIS record- I LOVE THIS RECORD!!" He was enthusiastic and LOUD! The store clerk was hanging behind the counter and I kind of smiled and said, "He has autism, sorry it's a little loud."

He was totally understanding, as most people are when I tell them about Liam's diagnosis. Then he went on to say, "Yea, that's interesting because there was this one time this kid came in here freaked from fireworks. He had autism and all he could ask for was John Mayer number 8."

I laughed. "Uh, yea, well, that's Liam! That's the same guy you're talking about right here."

"NO kidding!"

So, I said,"Liam do you remember coming here with daddy during the fireworks show when you were upset? You were so little, you probably don't remember that."

Liam very nonchalantly said, "Yes, I do. And, that guy's name is Edward."

I looked at the store clerk and he nodded surprisingly that yes, he was indeed Edward. No name tag gave it away. Liam just remembered it. Liam had never talked about that incidence, so I never assumed he remembered. We both just looked sort of dumbfounded at each other. And, Liam moved on to other band names, "Vampire Weekend, we have THAT record!!"

Huh.

I was stunned. Liam's diagnosis is Pervasive Developmental Disorder NOS which is a fancy autistic name for developmental delay. But, I realized in that moment there was a lot more going on in Liam's brain than I gave/give him credit for. He knows things. He remembers a great deal. And, he is taking in a lot more than we can even know. His words and conversation do not match this knowledge, so it is difficult for me to know exactly what he sees. But, I am fascinated.

Edward has become part of our routine down at the beach. We will go to the record store a few times a year and say hello. Edward gets a kick out of how tall Liam's gotten or the obscure bands that he knows about.

And, I'm continually fascinated at the way my guy's brain really works. I get to see pockets of this every once in a while, but rarely. We mostly talk about the same few interests he has in looping paragraphs.

But, I learned a lot that day. First, never go ANYWHERE without noise-canceling headphones and NEVER underestimate your own child. They will surprise you!!

Joseph "Joby" Abbott Walker, Sr.

*Thanks for reading today's post. Due to life getting in the way (aka 'stuff happens') I am writing another post NOT directly associated with autism. I promise to get back in the swing of things, but had to just write about what was on my heart. I hope you will stick around....thanks, R*



Today was a cold, bleak January day...

I couldn't believe the temperature change from one day to the next, and then I remembered I lived in middle Tennessee. I grew up in Alabama, and we could have extreme weather too. But, those 250 miles north give it just a little more bite. A bit more than this southern girl likes. 

So, today's weather sort of matched my mood.

I wept as I drove in to class early this morning listening to a song a friend wrote about the stuff of life. I woke up in a funk- which usually happens when I have to be coherent before 6am- but today's funk was different. 

I experienced a death last week that I did not realize I was not ready to accept. My grandfather, Papa, died suddenly at the age of 85 in his home in Alabama. I include his age only because, while it is an 'old' age, there was nothing old about this guy's spirit. I have perused all of my pictures I have of him, and in every one, there is such a twinkle in his eye. There is so much life in his face. So, I think I just took for granted that I could travel to Bama and see he and my grandmother whenever I wanted to. The old cliche that you just think someone will be around forever.

The stud that he was!

I realize that the past few posts I have done have not been specifically about autism. But, I hope you will indulge me and let me share a few stories about Papa. They're not fantastical, but they are funny/special to me. 

It was rumored that my grandparents' house was haunted. My grandmother would often say that she would just say hello to the 'ghosteses' as she would call them. Whenever my parents would go out of town for any length of time, I would end up staying with my grandparents who lived right next door to us in this ginormous house. 

Their house was huge in my mind as an 8 and 9 year old. There were 3 bedrooms upstairs, but I would always prefer to sleep in the study which was next to my grandparents' bedroom. One time, my best friend, Katy, came to spend the night. We would scare ourselves thinking about the ghost stories and get ourselves so worked up about them. But, we secretly loved it. 

So, there we were getting ready for bed in the bathroom in the long, dark hallway. We were looking in the mirror brushing our hair and teeth and whispering to each other. 

All of a sudden, completely out of nowhere, Papa jumped out behind us to where we could see his reflection in the mirror. His hair was wiry, crazy, and going all over the place. He had on a white v-neck and white boxers, and his eyes were bulging out of his head.

HAAAAAAAAAAAAAAAAAAA!!!!!!

We screamed like we have never screamed before! Even after we knew it was him! It felt like a good 30 second scream.

His response was always the same after he teased one of us.

"GEEETCHEEEEEEE!!!!"

I think this was supposed to be the country version of "I got you", but it worked nonetheless. He got us. And good. 

He howled with laughter while I beat on his back out of frustration, but mixed with a ton of relief that the ghosts had not descended upon us.

                           ****************************************************

Papa grew up on a farm in the middle of the depression in the 1920's. My dad would often say he was 'depression scarred' because he would do things like leave paper towels out to dry. Or, he would fix EVERYTHING with this stuff called Shoe Goo. It didn't matter what the problem was, or if the problem really just needed to be thrown out, Shoe Goo was the magic touch. Yes, you could fix your shoes OR you could fix the seal on the window, or patch up an old lamp, or frying pan whose handle had broken off...didn't matter. It also didn't matter to him that it was urine yellow in color when it dried. 

My family is much more concerned with function than form.

One time on a beach trip, my grandmother, Gran, as we call her, bought me a pack of cinnamon sticky buns to eat for breakfast. As kids do, I left the package partially opened all  night on the kitchen counter while I slept. 

When I woke up the next day, a pack, gaggle or herd of ants (not sure of the term there) had made their way up along the bar and into the entire package of cinnamon rolls. They were crawling in ecstasy as they were over every inch of my now ruined breakfast. 

As I looked to my left, I noticed that Papa had a huge jar of honey that he had gotten from his cousin's farm. The ants, not to be outwitted, had made their way under the brass Ball jar top and into the honey. It looked like someone had taken a pepper shaker and poured bits of pepper all in the honey. You could tell these ants had their dying wish to drown in this ocean of golden, yellow delight. 

I felt so guilty for leaving the package opened all night and ruining Papa's favorite honey. 

"I'm sorry, Papa. I've ruined it."

"WHAT?!!  Nah! There's nothing wrong with this honey." 

And, I watched in horror as he spooned out tablespoons of honey and spread it all over his English muffin. He closed his eyes and ate it like it was something served on a silver platter. There was no way he was gonna let that whole jar of honey go to waste-noooooo sirrrr!!!!!  

                 ****************************************************************

I could tell you stories of how he kissed everyone he met- grown men included. I could tell you about his loud, but beautiful, tenor voice that he pridefully sang all the harmony parts of the hymns in church. 

I could tell you about all the times we would swim in his swimming pool in the backyard and play tag. 

I could tell you about the road trips he would take me and my two boy cousins, David and Daniel, on: to the beach, Tennessee, Mississippi, ski trips, and family reunions.

I could tell you that he would always wake me up in the mornings with the same farm boy song that his daddy used to sing to him about two cows called "White Foot and Light Foot":

                           Wake up, White Foot.
                           Wake up, Light Foot.
                           Come and follow Jesse to the milking pinnnnn.

To this day, I still don't really get that song, but I love that it was his routine. And, it was his little thing.

I could tell you about how he always, without fail, had Wrigley's spearmint gum in his mouth because he said it helped him clear his throat. I knew where his stash was in his office, and I would help myself to a pack or two every once in a while. (sorry, Papa)

And, I love the fact that I got to spend the most time with him in years because I was the oldest grandchild. 

I could also tell you about the time a few years ago he said something so hurtful to me in passing. It cut me deeply. And, a year later, as I was sitting beside him, he looked at me and said he was sorry for what he said. He knew it was wrong, and would I forgive him. 

That healed me. 

Sorry's were not thrown around much growing up. So, his sorry meant something profound. 

I could tell you all about the godliness of this man. A man that consistently pointed me to Jesus. A man that cried a little bit every time he said the blessing (and his blessings were always a little too long!). A man that tasted and grasped the Gospel. A man that asked everyone (much to my embarrassment) if they went to church, and if they did, did they tithe. You gotta love a man with conviction and heart. And he had both! 

Papa and his cute little Christmas vest!

I guess I just wanted him to know all of these things. I wanted him to know the impact he had on me as a little girl and who I am as a mother today. So....I guess this is me doing that now.

And, as I share these memories, my mood lifts. I get a smile on my face. It gives me encouragement to be a legend in my own sphere of life. To touch those around me in ways that are meaningful and life-giving. To bring joy to seemingly ordinary days. To always laugh. And always be grateful because there is so much abundance around us every day.

This was my Papa. And, I love him.