Dancing Barista

Wintry days are here, and we have a whopping 6-8 inches here in the mid-state of Tennessee. That may as well be 48 inches to us southerners who gasp and shriek with delight at this alien form of white powder that rains down upon us! Roads are closed, businesses shut down, so there is nothing left to do other than to....

HAVE AN IMPROMPTU DANCE PARTY IN THE KITCHEN WHILE DOING THE DISHES!!!

Well, this is what I tried to do when I realized that no one else was home. Kanye came on loudly and I was lip-syncing and white girl dancing so hard when I saw something out of the corner of my eye.

I looked out the window and saw the battle-worn face of Liam coming home from sledding and playing in the snow. I only had a quick 3-4 seconds before I could turn the speakers down so that he would not have a conniption fit at the volume in which "Touch the Sky" was blaring. I had a tough choice to make- continue my kitchen concert and risk his rage, or turn it down and pretend like I had been heating up his hot chocolate the whole time.

I decided to take a risk-I mean, hey! This is my house, dadgummit (who's mom from Bama used that word when she was mad?!) I pay the bills and feed everyone (most of the time), so I can have the volume any way I want it!!!!

This is what I looked like in my kitchen!

When he came in, he predictably rounded the corner with disapproving eyes and shook his head. Like he was the parent and he found me underage drinking in my closet.

"MOM, ...WHY? WHY, MOM??!!

Funtime over. Somehow my 'running man' with a huge grin on my face did not get the smirk I was looking for. I slowly went back to the speakers and turned them down, and eventually off.

I never know which mood I will get back. Sometimes I will get the playful side and get a few more fun moments out of it, but most of the time, this is the reality. Hard to know what's autism and what's teen annoyance.

So, I decided to take this rare day of "nothingness" and get into my creativity of writing. I'm always glad when I do, but it seems so hard to start. Story of my life.

I got some inspiration to write after a friend sent me a touching story about a man named Donald Grey Triplett. Donald was the first person ever to receive an autism diagnosis. The story details are unique and yet the same as those of us grappling with those first few years of autism. His parents did not know what was wrong with their child. After a doctor said there was nothing he could do, they made the difficult choice to institutionalize Donald because that was what you did in that day. Anyone that was seen as out of the ordinary wasted away in a sterile mental hospital. The doctor even told them to move on and forget about Donald- that somehow that was the best thing for him and his parents.

Donald Triplett-wasn't he precious?

But, the parents never forgot about Donald. They decided that they would not allow him to grow up as a patient, but a person with a story. A story that mattered. Their perseverance and hard work made him the man that he is today. He is remarkably still alive at 82 years old! He plays golf and lives independently in the house he grew up in.

But the most incredible part of the story is how his small-town community rallied around him and accepted him. In the town of Forest, Mississippi, in the 1940's and 50's, when difference and diversity was not something embraced or encouraged, this community decided to make him one of their own. They welcomed him in their schools, their restaurants, and businesses. He even made some of the girls swoon!!

Which brought me back to my own situation and how I have chosen to make Liam a part of his greater community. This past year we learned that Liam was not doing so great in school. The IEP that he had was not really working any more and we, wait, what am I saying, I had to make the difficult decision to place Liam on a special needs track. This track would knock him out of the traditional path that most students take. There is even a school close to our home that serves children with his diagnosis, and I have had many people ask me why I have chosen to keep him in the public system here.

And my decision is simple. It comes down to community. The way the kids rally around him at school events and the way his church youth group members high five him when he walks in the door is worth it. My prayer is that he will continue to have community even when it is not in the bubble of school. This will be the real test. Will people accept him the way he is? Will he be given opportunities to do meaningful work? Will an employer see the gifts he has to offer the world and take a chance on him?

These are answers I simply do not have. But, the tide is turning and more and more people are realizing the importance of including those with special needs in the work force.

And just when I was finishing this post, another sweet friend sent me a link to a young man hired by Starbucks as a barista. He has autism and a movement disorder, so the Starbucks employees have dubbed him the "dancing barista". They have taken something that most would maybe see as a disability and reframed it as something with positivity and light.

See his awesome video here.

I don't know you Donald and Sam, but I am grateful for you. Keep paving the way!

And, to the people in the world who go the extra mile for those with disabilities, you are the angels we need.

Thank you.

Summertime Rulez

Ahhhh Summer!!!!!

The time of year where we can let the bedtime routine go. The time of year when the sun is hot, the pool feels welcoming, and fresh fruits taste amazing! This is the time that most of look forward to all year!

But, for families of autism, summer can be the most stressful, nerve-wracking, patience-disturbing time of all.

Our kiddos with autism crave control and structure. It is in their DNA. This is why they love school so much. School is a bubble. It is a test tube of endless lists and tasks that are implemented by teachers that are trained to do such things. Home is a battleground of pesky siblings (who know the autistic's every button to push) and of over-tired parents who are just trying not to drown in their own problems of keeping it all together.

As one mom said to me in tears, "why can't I seem to get it together enough to have the good report that my son's teachers seem to have of him?" In other words, why do our children seem to behave better at school than they do with us at home?

I have a few theories about this:

-First of all, as stated earlier, school has all the resources needed to set these little people up for success. There are at least 2-3 more adults in the room than at home. (hello!! Wouldn't we all love at least 4 more sets of hands at home?) There are other children that are NOT related to them that can distract them from whatever is bothering them in the moment. (aaaaauuuuhhhhhh!! This shirt has a tag in it!!) Also, this is what these certifiably insane people have SIGNED UP to do in life. Yes! They have signed up to teach/corral/herd these children by CHOICE! So that means that they have had more training and (hopefully) more patience than you ever will. They can be almost perfect with scheduling because they have to in order to keep more than three children alive!

-Secondly, our children will always be more well-behaved with strangers. This is a good thing! We want our kids to act out with us because then we know they feel safe. We tend to "show our butts" when we feel like we can. We are our truest selves with those that we know will not abandon us.

-Thirdly, these teachers can do all of their schedules, ABA appropriate rigors, and rule-keeping because THEY GET TO GO HOME AT THE END OF THE DAY.


Let's just cut to the chase. Summer is hard. Breaks are hard. So here are a few things I have found to help make it through.


1. Every summer when Liam was younger I poured over websites of churches and camps to see who would be able to handle my little bundle of joy. Sometimes my searches came up short, but I eventually landed on a YMCA camp through Easter Seals. This would be more geared for elementary age children through high school, but well worth looking into to see if they have a program that would work for your child. We also did Vacation Bible Schools-several of them! It could be that a particular church has a ministry for special needs children. Or, maybe you could volunteer to go with your child and act as an aid for others. Obviously, if you're looking for a break, that is not the best option, but if you are looking for something to get you and your child out of the house, it could be ideal.

2. Schedule your down time!! This is my least favorite. By now, if you've kept up with this blog you know how much I hate schedules. But, for everyone's sanity, I would at least try to have a skeleton of a schedule for each day. Your schedule may have a large amount of digital activity on there (i.e. THANK YOU, JESUS, FOR IPADS!) This is okay. We're in summer mode and their brains are not going to rot if they watch several shows in a row. This is parenting bootcamp, let's not kill ourselves here.

How do they come out of the womb knowing how to  do technology?!

3. (in the same vein) Let go of Mommy/Daddy guilt. This may be your hardest task yet. Let go of trying to have it all together. You're exhausted, and so are they. If you need a nap, plug in the iPad and let that be their quiet time. Stop comparing yourself to their teachers and other parents on Facebook. Trust me, they're using the iPad too. That's how they have time to post on Facebook.

4. I realize that not all parents may have the luxury of taking a trip. Maybe a trip is the worst thing in the world for your family. Maybe it's just easier staying at home. BUT, every summer, we would plan a trip to the beach with my parents. I can say that I have been blessed with two people who, are not perfect, but love my children well and do pretty good with having them around. They have had to learn, like we all have, to roll with the punches and parent a little differently than maybe they did with me. This is a week that we always look forward to because it allows us to get away from our norm and rest. I encourage all of my readers to take the time to find rest--and water. Water is healing and  may be the one thing that helps calm your little one.

Nashville Public Library Story Time

5. Find something to do once a week that can become a summertime routine. One thing that we used to do each week was go to story time at our local library. Nashville has a beautiful library in the downtown area and has an award-winning children's outreach through their puppetry program. This is a free program and they have a beautiful outdoor area where you can picnic and kids can run around without people staring or judging you for their squeals of joy. I would encourage you to find something that you can do as a family once a week that helps both of you. It also teaches your little one to adapt to the outside world. They have to learn how to sit and behave at some point, and this could be a safe way to do it.

6. EAT LOTS OF ICE CREAM

7. Remember to laugh at yourselves.

8. Phone a friend.

9. Let go of household chores for maybe one day. (or 5)

10. Be kind to yourself.

Wake up. Repeat.

As "Iron (Bowl) Sharpens Iron"

***Many thanks to Kristen for reminding me why I do this blog! Thank you for writing and getting me back on the horse!!***

I have not fully accepted that winter is quickly making it's comeback. The weather is indeed frightful outside with a big ice storm on its way, so today is a perfect day to get under a blanket and write this blog. This southern girl does not do well in the cold. 

Since the last blog, I am happy to report that Liam has settled in nicely to middle school. I have made great sacrifices to stay in the county where we live because the school system here is amazing! All of my support network and family lie one county over, so it can be difficult when the stuff of life happens. But, it has been well worth it when I come to an IEP meeting and his teachers give me good reports and seem truly invested in his learning. He is independently walking to each class and has minimal support in the inclusion classrooms. He is only pulled out a few times during the day for individualized teaching- which is HUGE! We are putting him in different arenas of extracurricular activities to see which one "sticks". I can report that while being the water boy for the middle school football team over the summer and early fall was an honor, I think he likes knowing the stats of the game rather than the manual labor required to actually fill the bottles up and take them to the players. 

The Water Boy!

To my horror, players and coaches were many times desperately yelling for water while Liam was too busy staring into space and adding up the yardage gain in his head from the previous play. I had to stop going to the games because I would get more stressed out about his lack luster performance than he would! 

I don't believe I have fully explained Liam's obsession with football on this blog. He just so happens to be one of the biggest University of Alabama's fans. And, unless you are just completely unaware of anything sports related, Bama has been consistently on top for the past 5 years. And, unless you live under a rock- there was a small (really tiny) game played this past Saturday that rocked Bama's hopes for a 3rd National Championship in 4 years under the reign of head coach, Sir Nick Saban, or "Lord Saban" as he is referred to in our house. And, this game may have been our fiercest rival ever. And, the last play of the game before inevitable overtime, may just have been played and replayed countless times on every single network on every single channel in the entire nation. Our beloved team lost. Our championship dreams dashed by a "miracle" play that some are calling the greatest end to a football game in history. 

Lord Saban with his team!

We were in shock. 

To work so hard to get to this point in the season-only to lose in one moment was gut-wrenching! I act like it was me on the field playing the game, but this is SEC football! We live and die football down here. 

As my mind stared blankly at the screen, my family members all muttering sighs of disbelief, a familiar sound came from the bedroom next to us. Liam had wisely given himself time-outs through out the game if the score was too close for comfort. He would emerge from the bedroom, check the status, and quickly go back in and close the door if he knew his blood pressure couldn't handle it! But, the sound I heard was one of angry screams of rage, things being thrown, and walls being punched! 

I had been preparing for this day all along. It's pretty remarkable that Alabama has won as many games as they have. They have been the team to beat for several years and there was talk of a dynasty occurring. So, in the mind of a child with autism, winning becomes a routine. And, I know I have talked on this blog about the futile nature of trying to explain winning and losing to him. 

Then, to make matters worse, another family member raged at the fact that Liam was raging...

We were all grieving, and none of us knew what to do but to go to our default modes of coping.

When I finally made it in to Liam's room without having things thrown at me, he was lying down, breathing deeply, hands close to his face, and eyes closed. I scratched his back and we both sat in silence for a while.

When enough time had passed, he looked at me wide-eyed and said, "Mom, MY 'play of the game' was the 99 yard pass that AJ McCarron threw!"

AJ McCarron is Alabama's QB that threw an incredible 99 yard pass for a touchdown in the 

Few QB's have as many Championship rings as losses!

same game that Auburn won. It was indeed a great play and probably would have moved AJ's chances of winning a Heisman- if Bama had won the game. 

But, it was not the pass that stood out to me. It was Liam's ability to bring it back around to a memorable moment of joy in the game. To me, this was a giant leap for mankind!!! (okay, maybe just our family)

Liam was able to recall a good moment and let that be his comfort. He could have easily dwelt on the loss for days and days on end. But, instead, he focused on the positive- something that he has never been able to do very well (if ever) up until this point. And, something that is very difficult for him given his unwavering obsession with all things Alabama sports. 

The Auburn-Alabama game is called the Iron Bowl every year for historical, and some more obvious, reasons. With Iron-Bowl-like strength, Liam managed to kick the walls, throw a few items, and tear things up. But, miraculously, he used that same strength to dig deep and find a ray of light in the midst of heartache. 

The lesson here is that things are moving...things are changing...he is progressing...and the struggles we have dealt with for so long are finally moving more and more in to the past. And in the meantime, he teaches ME the stuff of life. He is teaching me to focus on what went right instead of what went wrong. 

Proverbs 27:17 "As iron sharpens iron, so one person sharpens another." 

He continues to "sharpen" me every day! I love this, and I love that little guy! 

Oh...and Roll Tide Roll!!

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....

Champions in the Ring

It is somewhat early this morning on a Saturday. With my oldest son in marching band, it feels like I have taken on a part time job. But, there are no complaints coming from this girlie-girl. I have spent most of the past decade waking up at the crack of dawn on Saturdays against my will. Liam is still peacefully asleep, and that is just fine with me. Once his feet hit the floor, I am on duty, so I treasure every 'non-waking' moment. :)

Big bro Walker carries a heavy load on and off the football field.

With Walker being in the marching band, it has been a different kind of busy. A nice busy. There are rehearsals, band camps, performances, and meetings. There are early mornings and late nights. But, as a parent with a child on the autistic spectrum, most of my school visits and activity have been IEP meetings, doctor's visits, and therapy appointments. This is the one memo that you do not get when you first get your diagnosis of autism. 

These psychologists know what they are doing when they give you the big 'A' on your child's chart. They don't blast you with all the information on the first visit. Because if they did this, you would hurl yourself off the nearest, tallest building. They don't tell you everything that you will encounter. They allow you to decode this for yourself, one day, week, month at a time, like a slow, painful death. (I kid, I kid)

I think this is the grace of not knowing the future. If we as parents knew what we would encounter, we could not handle it. We are just doing good to make it until the next day, much less month. 

Liam had the misfortune of having five or six different special ed teachers in less than five years. You might be tempted to say, so what? My kid has a different teacher every year! To that I say, talk to the hand! Because if the change and disruption of moving up a grade is not enough, the change in leadership for a child with autism can be devastating. 

This is the secret that we parents of spectrum kids know. You cannot do sudden change. Your kiddo will put you through the seven realms of hell if you do things to disrupt their cosmos. Autistic children depend on consistency like we do water. It brings them comfort and stability in a very unstable world. 

(To prove this point, generally every morning I watch the Today show. At precisely 7:27am, the local news comes on the TV with an update on news, traffic and weather. I know this because at 7:27am, their NBC news theme music comes on. Liam dramatically stops and drops whatever he is doing to stare at the TV and listen to that theme song. He will stare at it so intently and then have a smile of relief like, "whew, okay, I can move through the day now." I made the horrific mistake of instead having the ABC affiliate on the other morning. I shall never do it again.)

But, back to the lecture at hand, (Dr. Dre reference), change is no bueno for these little guys. And, unfortunately, we must learn the hard way. If I do something twice it quickly becomes 'routine' for Liam. So, I really have to be careful what I find myself doing. (like watching the Today show) [see also, "Hairspray is Hazardous", a few blog posts ago]

So, there we were having a new special ed teacher every single year of school. And, if learning is a bell shaped curve, figuring out Liam is like tackling the Liberty Bell. Or the biggest bell you can think of. 

I love walking in to these teachers on the first day and seeing them bright-eyed and bushy-tailed. Fresh out of grad school, they are ready to conquer the world of autism. It's like they are these young, champion boxers in the corner of the ring, bright red boxing gloves on, with a 'can-do' attitude and a perma-grin smile. 

By week 6, they are beat up, ego-bruised with a white flag, in the corner of the ring, shrugging their shoulders going, "he was much bigger than I thought", breathing heavy, "man, that left hook...woo!"

Now, no one got a literal left hook from Liam. But, he is smart and savvy. He is not to be toyed with. You must stay one to two moves ahead of him if you are going to survive. 

This is the point when Mrs. Vicki and Mrs. Kelley came in. They looked at the stats, the playbooks of all the former teachers and said, "don't worry, we got this!"

They rolled up their sleeves and made things happen. They started thinking not just one or two steps ahead, more like 5 or 6. They never told me this, but I think they would go home at night and think about my child. They never gave up. They saw his potential and took advantage of it. If Liam tried to flank them from the right, they were there ready to take on whatever he brought-never afraid to change tactics mid-stream if they needed. 

These are the people you want on your team. I feel an incredible amount of gratitude that I live in a school system that has people that give a darn. And, if you are reading this, and you don't have that support, I pray that you can find it in other arenas of your life. And, I believe, with all the new education and info on autism that more and more school systems are starting to 'get it'.

I often say Liam's smiles get him services at school. This is Liam wearing Walker's band shako. 

I know I stress this a lot, but support is paramount. These two women have been and continue to be creative in their approach with Liam. It takes smarts and know-how, but it also takes a necessary amount of intuition. 

If you do have a Vicki or Kelley in your life that is passionate about your child and the journey your child is on, I want you to drop whatever you are doing and thank them. This job has a high turnover rate because, quite frankly, it is hard as hell. It is thankless because many times they do not get to see the fruits of their labor until much, much later down the road. (if, at all!)

Worship them, kiss their feet, tell them how much you appreciate the fact that they spend 40 hours of their week with your child. (I will often say if I had the money, they would all get week long cruises to the Caribbean, but, alas, I do not.)

It will give them the much-needed encouragement to get back in that ring again- fresh-faced, gloves polished and tight, ready to tackle this diagnosis head on.