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.

First Chair

In the hustle and bustle of life, we forget to feel. Well, it's not exactly like that. We just forget that we have all of these emotions pulsing through our veins at any given point.

Yes, that's right. Those things you thought you were pushing down into your belly don't exactly go anywhere. They tend to just float right back up to the surface. Those pesky little things that were created to tell us the temperature of our emotional selves continue to bounce all around us. And, as my mentor said, "If you try to get over 'em, you end up under 'em."

And, alas, the more work I do on myself (by way of counseling others and my own therapy), the more I find this statement to be true.

I found myself out and about a few nights ago, celebrating my best friend's birthday. We had amazing wine, great food, and hilarious banter! It was a fancy restaurant and I was dressed up both inside and out. I had my "outfit" on and I had my witty Self on that night as well.

On the car ride home, I was ecstatic to get to see Liam and tell him how proud I was of him. He had made first chair that day in percussion. First chair is as big a deal as any in our household. This is because the phrase starts with the word "FIRST", and as I have commented on many a blog, this is the word that sends my little guy through the roof!! He both loves and disdains competition. It excites him and freaks him out at the same time. He wants to be first every week, but there's always someone a little bit better than him...until this week.

The idea of chairs in percussion is you must play a scale on marimba the fastest without missing any notes and playing it in time. It occurred to Liam's friend, Zach, (see the blog "Sleepovers") that all of the other players had played the piece at 135 bpm, so Liam should bump it up to 140! Liam reluctantly decided to follow his advice and speed through his scale at 140.

He was so nervous after he played, he ran to the practice room and turned off the lights, waiting to see what the results were!! The pressure was just too much!

The list was typed up and printed off...the band teacher slowly walked over to the wall and slapped the results up so everyone could see who got what.

And there it was...Liam, after almost 7 1/2 months of school, was first chair.

The coveted FIRST CHAIR-I picture a throne in my head. 

So, you can imagine my excitement for him! I couldn't wait to hear the play by play and get a high five. I couldn't wait to bask in the moment with him and see his face light up when he told me about it.

Admittedly, I did get home a bit late, but I knew he would not be fully asleep. So, I tiptoed up to his room to have our big moment. 

"Liam," I whispered, "I am so very proud of you getting FIRST CHAIR today!" **enthusiastic, but still tempered whisper**

Instead of rolling over to give me the high five my heart clearly wanted, he shot up so quickly in his bed, that he smacked his head into my forehead. It was most definitely going to leave a mark- on both of us.

"MOM, WHAT ARE YOU DOING- GET OOOOUUUUUTTTT!!!!" **enthusiastic teen rage in loudly audible voice**

"FINE!!!! I WAS JUST GOING TO SAY HOW PROUD OF YOU I WAS, BUT NOW I'M NOT! GOD, YOU RUIN EVERYTHING!!!" **enthusiastic teen rage coming out in a mommy's body**

Yep. Not my proudest moment. I was hurt- both physically and emotionally. I was angry. And I was lonely. 

In my counseling office, I am teaching my clients to use feeling words instead of the all-too-popular responses like, "meh!", "frustrated", "stressed", etc. These words do not hit the heart the way that anger, sadness, shame, and lonely do. They just don't. So often we use these words to hide the very things that we NEED to be feeling. So, the very things that I am teaching my clients have to be put in to practice in my own life. (oy veh!!)

It's much easier to say that the traffic was mildly irritating, but my actions spoke much more like rage when I honked and cussed in my vehicle. Or, when I try to shrug off something important in my life and call it a "blah" day, I'm more likely extremely sad. I'm in grief. 

My response to Liam was anger, but it came from a deeper place of hurt and longing for relationship with him. When I am honest with my feelings, it puts me in touch with my soul. It allows me to know ...well, ME! I can then begin to know the deepest places in my heart that need healing, that need restoration. If I am constantly using other words to describe myself, I am leaving myself on the operating table of life-bleeding and, sometimes, without a pulse. 

When anger creeps in (as it does a lot of the time), I can begin to see the roots of other emotions that are trying to drive the bus of my heart. When I own up to it (what is actually going on inside of me), my heart/soul/Self then drives the bus. Then, it is I who sits in the "first chair" of my own heart. And I can begin to help my emotions sit in the passenger seat, continuing to give me clues to who I was made to be.  

There will always be a tinge of loneliness, hurt, and anger as I live with a child who has very little capacity to see me. But, on those rare occasions when he does see me, I will relish it! I will know beyond a shadow of a doubt because there are no mixed words in autism. 

There is only truth.

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....

Shakespeare and Medicine

Hello fellow readers! I am currently procrastinating (of which I have earned a PhD in) and should be packing for my early morning trip to Indy. First trip there, and very excited to be going! 

A few business matters to attend to: I am seriously hoping to get my blogged 'suped up' (is that how you spell that?) and looking fabulous in the next month or so. If you are reading this and feel so inclined to lend your artistic talents to this endeavor, this girl would appreciate it. I haven't a clue as to how to do fantabulous things like html code, flash dance, cookies, or whatever else you need to make a web page look nice. (now I'm hungry) SOOOO...message or email me if you are interested.

Also, if you have feedback regarding how the site looks, the flow of it all, and what have you, please let me know. I want this to be an easy read, but want it to look 'offish' as well. 

Well, I think everyone can agree on one thing- that we can all breathe a deep sigh of relief that the election cycle is over. (at least, of course, until the Senate and House do their campaigns in a little less than a year and a half) One issue that I would like to see coming up in debates and campaigning is the issue of autism and how it is affecting so many of us. I love that Jon Stewart hosted the "Night of Too Many Stars" benefit because it is going directly to fund programs that help our children- things like occupational therapy, speech, ABA therapy, and others. These are the only proven "cures" for autism and they are just so expensive for the average family. I am also hoping that the insurance business will catch up with the astounding numbers of diagnoses and cover extra things like ABA that have so much research to back up their work. 

If you did not get to see this Youtube of Katy Perry singing with the little girl diagnosed with autism, bring your tissues and watch. It will melt your heart!!! 

But, for now, I am going to take a breather from anything political. I don't know about you, but I'm exhausted!!

But, as we are on the topic of insurance and such, let's dive right in to medication. Just the word sends shivers up your spine, doesn't it? The dreaded decision: to medicate or not medicate, that is the question. (I would have totally paid attention in Lit class if Shakespeare had started Hamlet with that little gem!)

But, seriously, I know many of you are staring that decision right in the face as we speak. And, it is a big deal. I do understand how hard it is. And, I will share my story.

When Liam started early intervention preschool here in Tennessee, he had just turned three years old. Nearly everyday reports would come home of him hitting other children or becoming extremely aggressive with his teachers. Nothing is more upsetting than this. Truly. As I pointed out in another blog, none of us want to be THAT parent and our kid to be THAT kid. But, so it is that with the frustration these little guys feel, there comes some serious backlash. 

Most children have that inner compass that will give them the "hey, maybe that reaction was a bit much!" Or, they just have a longer fuse. But, children with autism (and sometimes ADHD) were not born with a fuse. It doesn't even exist. So, it does not matter that your child is that sweet little blond girl with a pink dress and curls playing quietly to herself. 

WHAM! 

She's going to be hurt because she was in the vicinity of a nuclear explosion from my kid.

We did not get the official diagnosis for Liam until he was almost 5 years old. So around 4 1/2 was when we decided to see a neurologist in town that prescribed meds for him. I was a nervous wreck in that office. I did not want my child to be on the front of TIME magazine as the stoned out child with PROZAC NATION written across his face. And, it didn't help that this particular doctor handled our case with the bedside manner of a physician from the front lines of the Cold War. She saw 20 kids a day that were medicated so our decision, and the wringing of hands, was a time waster, and she had better things to do. But, according to everyone, she was the rock star of the doctors and well-respected, so we went with it. 

Funny, Liam was not as happy as this child when I was giving him medicine.

The next thing I know, we are measuring anti-depressants in medicine droppers and figuring out new and exciting ways to shove this down Liam's throat. I can remember making concoctions of juices (of which he became totally turned off), hiding medicine in foods, and even putting some of it in chocolate syrup. This road was not easy. Nothing seemed to work for him. 

We would try one and it would make him so ramped up that he would grind his teeth while he was talking. We would try another and it would make him so drowsy that it made me sad to watch him try to function. We tried so many things on her various 'shelves' and tiers of medicines. 

I will not lie, it felt very cruel. But on another level, his behavior was so erratic and unpredictable that he was not only going to hurt someone else, but himself as well. I hated making my child this little guinea pig, but I felt in my gut it was the right thing to do to keep our sanity. 

I cannot remember the sequence of events, but somehow we stumbled upon Vyvanse, which is the ADHD medicine a lot of children have had success with. Once we started this, we began to notice marked change in Liam for the better. He was calm, but not without a personality. His teachers were impressed and he started being able to function without so much impulsivity. I can remember crying tears of joy when I got a note home saying how great things were going at school. If you are anything like me, when you see the number to the school come up on caller ID, your stomach drops. Those calls were coming in less and less.

I won't go on and on. You get it. And, this is not an ad for Vyvanse. That was one tool of many that we have tried on this road to, well, I was going to say recovery, but I think the better phrase is, this road. 

I do not pretend to know all the various circumstances you have going on in your life, your marriage, your career, all of it. But, I do know that there is a lot of unnecessary shame and guilt that people feel when they do medicate their child. I know it. I felt it too. But, I can tell you this. Liam began being able to learn and socialize because he was able to control the uncontrollable. He began to be able to sit with his classmates in school and not be taken out of the room every time he got 'a little heated'. He began to ask for breaks instead of slapping someone across the face. 

The medication gave us a level playing field. It was NOT a cure-all or a miracle. But, it did give us some much-needed rest. And, let me tell you, a lot of you aren't getting much rest right now. 

I did not take my decision lightly. It was with a lot of questions, research, and a ton of prayer. I did not know what the outcome would be, but I had to trust the others who had been before me. 

Other families may disagree with me. I have been looked at like I am a traitor to the autism community because I do not do all the enzymes and diets and whatever else is out there. My situation is unique, and I have had to make tough choices amongst a ton of shaming looks and "suggestions". 

This guy has great taste! (and a great smile, I might add!)

Your situation is unique to you. But, I would ask you to not do something out of shame and guilt. Medicating your child does not add up to you being a bad or negligent parent. For us, it gave Liam a fighting chance to be all that he could be. And, one day, he may decide for himself that he wants to be off of it. 

Until that day, medicine is just a part of our daily routine- like brushing your teeth or making your bed. His comes in a bottle, and mine comes in a little glass of wine and dark chocolate.